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Crohn's Disease Forum

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Izzie, you seriously can’t catch a break! I poop way too much, and you don’t poop enough, so maybe we can combine ourselves and have normal bowel movements?! I wish it worked that way. I really hope things start improving for you!

MissLeopard, we have a memory foam mattress in our guest room, and when I first slept on it, my back hurt. But once I started sleeping on it more regularly (once I got sick because it’s closer to the bathroom), I started to love it. My husband said he has always liked it better than our bed. And my guests have said they like it too. So I’m guessing you’ll love it, but just in case you don’t love it right away, give it a few weeks. Oh, and my cats love it too!

So my test for Lyme disease actually came back positive. My doctor said that I have active Lyme disease. My test showed two different strains, and my doctor said that when those two strains are present, those people are usually extra sensitive to medications and treatment and everything. That’s definitely true for me. I’ve been saying for years that I’m super sensitive to everything, especially medications, but I think most people just thought I was being a baby or something. Anyway, my doctor doesn’t feel adequate enough to treat Lyme, so now I have to find a new doctor who treats it regularly or is an official Lyme literate doctor. How many doctors will it take to get me feeling better? The jury’s still out.....

I hope everyone is doing as well as possible.
 
akgirl, I'm glad you've at least gotten some answers! I know Lyme can be tricky so hopefully now that you know you can get proper treatment. Definitely sympathize with needing too many darn doctors and still feeling like it's not enough...

I've started looking around for another specialist in case I need further treatment for the reflux. I'm not comfortable going back to the hospital where I had surgery - in part because they're just understaffed and underfunded and even if you have good staff present there aren't enough of them which feels very unsafe. And also because my surgeon and I have very different "styles" He's very old fashioned, he makes the decisions and doesn't discuss them with me and I'm supposed to just go along with it. I prefer a more modern approach where there's a dialogue, and that's not what he does. He's not a BAD surgeon, but to me it's a breach of trust when you don't get the full story or full explanation, and you feel that your doctor is arrogant and dismissive towards you when you have questions...

I understand that he's busy, and surgeons often have an odd demeanor, but it's just not a style of doctoring that I'm comfortable with moving forward. I also think that whole location is just tied up in post-traumatic stress and anxiety for me at this point after that horrid hospital stay.
 
akgirl:

I had Lyme in my peripheral nervous system about 15 years ago. Because of the location they had to put a PICC line in and I gave myself IV antibiotics every day for a month. Do you know how advanced your Lyme is? They can tell just by how many IGM and IGG bands show up as positive for Lyme. Has your doctor put you on antibiotics? You should at least start doxycycline immediately and take it for a month. I’m confused about why your regular doctor won’t treat you. Since not many doctors qualify as “lyme literate” you might just want to consult infectious diseases at your nearest big hospital. Mine was treated by my neurologist and my regular GP. I really hope you can start treatment right away.

Izzie:

Definitely avoid that hospital and surgeon. There’s no need to add to the horrible stress and anxiety from your surgery and hospitalization. But I’m sorry that means you’ll have to look for a new doctor.

Miss Leopard:

Glad you are feeling so much better!
 
Jabee said:
Izzie:

Definitely avoid that hospital and surgeon. There’s no need to add to the horrible stress and anxiety from your surgery and hospitalization. But I’m sorry that means you’ll have to look for a new doctor.
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I have to go back for the immediate aftercare and follow up after the surgery, which feels appropriate. I will be dealing with a nurse at that appointment.

I'm moving soon anyway, about a 4 hour drive from where I live now, so staying with this doctor is not feasible for more than one reason.
 
Jabee, I think what I have is considered chronic Lyme. I have no idea when I contracted it, but it’s likely I’ve had it for many, many years. So no one seems to be in a rush to treat me.....
A couple years ago, a doctor I was seeing actually suggested that I might have Lyme, but she never tested me for it. She turned out to be an idiot, so I stopped seeing her. But it’s kind of annoying that it’s taken this long for someone to test me for it. I’ve been sick for four years! I didn’t do the typical western blot blood test, because I don’t think that’s as accurate when it comes to a long-term chronic infection? I did a urine test, where I had to exercise beforehand to try to get the little Lyme guys out of my muscles and into my pee. That’s my understanding anyway haha. I know Lyme is complicated, and I basically know nothing, so I guess we’ll see what happens. I did call a doctor’s office here who specializes in Lyme treatment. I asked if they were taking new patients, and at first the lady said no, but then after hearing that I had the positive test, she said they would be willing to take me on as a patient, but that it wouldn’t be until next year. But next year will be here before we know it so that’s okay.

Izzie, I went through some tough stuff at one of the hospitals here, but it was emotional trauma, not the physical trauma you went through. I saw my mom go through some really horrible and scary things there, and that’s also where she passed. Whenever I go back to that hospital, as soon as I walk in and smell it (weird!), I almost burst into tears. Soooo the point of my story is that I’m sure you do have some kind of PTSD from your experience there. Watch out for the smell!! Ha. Hopefully you can find an awesome doctor in the new town you’ll be moving to! :)
 
I would get a second opinion on the chronic Lyme. My daughter had a negative western blot test and we chose to get a second opinion from a Lyme literate doctor, despite her sister having juvenile arthritis and my husband having AS (so a strong family history of arthritis). The Lyme literate doc made us do some other test, which the CDC does not recognize, and that showed that she had Lyme.

Her pediatric rheumatologist made it clear she did not believe it was Lyme (she had already tested for it) but said it was ok to do the course of antibiotics if we really wanted to. But she wanted us to get a second opinion.

We treated her with Doxycycline and Plaquenil, she got worse, not better. Her arthritis got worse, because we didn't have her on any proper arthritis medications. And she was miserable from the abx - nauseous and had stomach pain and diarrhea.

We then saw a second and third opinion infectious disease specialists both of whom said she did not have Lyme in their opinion, talked about the negative effects of IV antibiotics (which the Lyme literate MD wanted to put her on next) and said even if she did have Lyme, it would have been treated by Doxycycline.

She was treated for her arthritis after that and we decided not to risk IV antibiotics since there wasn't much evidence that they helped at that time. She got MUCH better once we put her on a biologic for her arthritis.

She continued to have GI symptoms for years and was eventually diagnosed with Crohn's. Much later I found out that Doxycycline can trigger Crohn's in those who are susceptible. Now I really regret finding that Lyme literate MD and wish I had done more research at the time.

Obviously, every case is different but be careful :ghug:.
 
Today has been rough, so far. I woke up with pretty bad nausea and cramping again, which led to diarrhea. I took 8mg of Zofran which stopped the nausea and diarrhea, thankfully. I've learned I cannot take the Donnatal at work because I get too groggy. Also, I was running late today and ended up walking pretty fast to the time clock. I noticed that my sacral region is pretty sore and I'm not sure why. It's a deep seated pain. I also had tendonitis issues in my left arm yesterday that are continuing today. Thankfully, I get my new mattress today, so I hope that will help. I wish I could go home. :(

ETA: I went to lunch and started eating and my jaw on the left side wouldn't open all the way. My TMJ is acting up. Not sure why that's happening but I think this last chiropractor visit hurt more than it helped - the after effects are worse this time. I think I'm going to have to lay off getting adjustments until I figure out what's wrong. :(
 
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Maya, thanks for the warning! There definitely is some controversy when it comes to chronic Lyme. I’ve heard really bad things about Doxycycline. Side effects seem to be pretty common, and I’ve heard it can even cause C. Diff. I’m honestly afraid of antibiotics, so I feel like that would be my last resort. My doctor said that since we know which strains of Lyme I have, if we did go the antibiotic route (which we don’t have to, there are other options), there would be two specific ones for the specific strains I have. And I kind of don’t think Doxycycline was one.....but I could be wrong. She also said that antibiotics don’t cure chronic Lyme. I think a lot of doctors don’t understand the difference between regular Lyme where you just got bit and chronic Lyme. But what do I know? Honestly, not much! I’ll for sure be doing tons of research before I decide what I’m going to do. I’m hoping someone will figure out how to do a Freaky Friday switch so I can just get put into someone else’s body, and someone else can get stuck with this defective thing. ;)

MissLeopard, it sounds like you’re having such a rough day! I’m so sorry. It’s just one thing after another. All that would suck if you were at home in bed, but the fact that you have to be at work makes it a thousand times worse. Hopefully some of your symptoms will start calming down soon.
 
I would just get several opinions, and not just one from a Lyme Literate MD. There are a LOT of different opinions regarding Lyme and Chronic Lyme and I honestly wish we had done more research before jumping to antibiotics, particularly since my daughter had a normal western blot test. I'm now very glad we didn't do long-term IV antibiotics like that doctor was recommending.

There is some good stuff on Medscape about it.

Long-term antibiotics and other treatments for chronic Lyme disease, also called post–Lyme disease syndrome, led to septic shock, Clostridium difficile colitis, osteodiscitis, abscess, and death, according to a review of five cases reported to the Centers for Disease Control and Prevention in recent years.
"Clinicians, public health practitioners, and patients should be aware that treatments for chronic Lyme disease lack proof of effectiveness and can result in serious complications," write Natalie S. Marzec, MD, a resident in preventive medicine at the University of Colorado in Aurora, and colleagues in an article published in the June 16 issue of the Morbidity and Mortality Weekly Report.
"The term 'chronic Lyme disease' is used by some health care providers as a diagnosis for various constitutional, musculoskeletal, and neuropsychiatric symptoms," the authors write.
Although there is insufficient evidence to support the use of prolonged antibiotics, immunoglobulin therapy, or other treatments in these patients, the treatments are prescribed by some clinicians and sometimes lead to serious harm, Dr Marzec and colleagues note.
For example, a recent study reported by Medscape Medical News provides further evidence that long-term antibiotic treatment is not an effective therapy for chronic Lyme disease, despite the fact that some guidelines recommend it.
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https://www.cdc.gov/mmwr/volumes/66/wr/mm6623a3.htm
 
akgirl said:
MissLeopard, it sounds like you’re having such a rough day! I’m so sorry. It’s just one thing after another. All that would suck if you were at home in bed, but the fact that you have to be at work makes it a thousand times worse. Hopefully some of your symptoms will start calming down soon.
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It got even worse after I posted - I'm a staffing coordinator and a nurse called out and I was unable to find a replacement. I was already feeling horrible and just wanted to go home and then had to deal with the stress of finding a nurse. I tell you, I was so tired - physically, mentally, and emotionally - by the time I left, I nearly cried while driving. My depression and anxiety are doing very well (I saw my psychiatrist yesterday and I'm doing fabulous) but my physical symptoms are really causing problems. :sign0085:

In other news, I am seeing my new primary doctor tomorrow! Please pray it goes well. I have to arrive 30 minutes before the appointment time and I have a lot to discuss with her. I hate that I have to change doctors but my primary is just not easy to get a hold of anymore and that doesn't look like it will change anytime soon...
 
Well, I have good news and bad news. I'll start with the good news first:

My appointment with the primary doctor went very well! I really like her - she listens, answers questions, and seems very knowledgeable. She wants to help me with my neck pain. I told her that I was getting pinched nerves and that the chiropractor visits only helped for a day or two and then I hurt even worse than before. Something that came to my mind is that, while he did range of motion and pressure tests, he never did an x-ray before he manipulated my neck - I mentioned this to her and a red flag went up. She put in a requisition for a cervical x-ray with side views. She thinks that I may have either osteoarthritis or degenerative disk disease. I was reading yesterday about cervical ankylosing spondylitis and wonder if that might be the cause. I also read about something called Barre-Lieou syndrome which matches all of my symptoms perfectly, but it's difficult to get a diagnosis - most doctors know it as cervicocranial syndrome and perform prolotherapy injections of dextrose to correct the disorder. I may need to see a pain management doctor if the rheumatologist is not familiar with the disorder. CCS is very similar in its presentation to whiplash injuries - but without the whiplash occurring.

So, anyways, I'm getting my neck x-rayed next week before my appointment with the rheumatologist (I got the whole day off) on Thursday and, hopefully, I will have more answers. In the meantime, the doctor prescribed me Flexaril (muscle relaxer) to hopefully allow the muscles in my neck to relax so they don't cause more pain and discomfort.

For the not-so-good news, I had a very rough day at work today which is making me rethink staying there another year. I've been there 2 years and I am going back to school next month to become a nurse, but I have to complete 3 prerequisites before I can apply to nursing school (a full-time program so I cannot work full-time). I was hoping that things would work out where I wouldn't feel like I need to leave, but the stress that I undergo on a regular basis is just not good. I don't get any support from the nursing director and I feel like they expect me to just pull a nurse or CNA out of thin air when I've exhausted all my options. I've decided to start looking at job openings again. I want to stay within the health care admin field and get either the same or higher pay than I'm getting now. Hopefully, I'll find something soon so I can give my 2 week notice. :(
 
My girls take Flexeril too, at night before bed. They both started at the pediatric dose (5 mg). It can make you feel pretty groggy and exhausted the day after, so it might be best to try it on a weekend to see how you react.

They both have Ankylosing Spondylitis. When you see the rheumatologist, they will probably run a specific gene test - HLA B27. You can be HLA B27- and still have AS but MOST people with AS do have that particular gene (both my girls and husband have it).

Axial spondyloarthritis (SpA) is much more common than AS, and precedes AS. To have AS you need a certain amount of radiographic damage to the SI joints (visible on x-ray). That damage takes 7-10 years to occur, which is why being diagnosed with AS takes a long time.

Common symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (so for example, sitting through a movie might make it worse, but a walk would make it better) and warm, red or swollen joints. Generally, the SI joints are involved first but sometimes in women the neck is involved first instead. In women, peripheral joints (joints other than the spine) are also more often involved. Really any joint can be involved, but commonly hips, ankles, heels and knees are involved, besides the SI joints and spine.

Tests would be blood work (for HLA B27, CRP, ESR), x-rays and if those are normal, then an MRI. An MRI would show inflammation, not just damage, so is needed in the earlier stages of the disease.

Degenerative disc disease and osteoarthritis are MUCH more common than AS or SpA. But just in case, I wouldn't go back to a chiropractor till you've seen a rheumatologist. They are not recommended for people with SpA.
 
Maya142 said:
My girls take Flexeril too, at night before bed. They both started at the pediatric dose (5 mg). It can make you feel pretty groggy and exhausted the day after, so it might be best to try it on a weekend to see how you react.

They both have Ankylosing Spondylitis. When you see the rheumatologist, they will probably run a specific gene test - HLA B27. You can be HLA B27- and still have AS but MOST people with AS do have that particular gene (both my girls and husband have it).

Axial spondyloarthritis (SpA) is much more common than AS, and precedes AS. To have AS you need a certain amount of radiographic damage to the SI joints (visible on x-ray). That damage takes 7-10 years to occur, which is why being diagnosed with AS takes a long time.

Common symptoms of SpA are morning stiffness, pain that gets worse with rest and better with movement (so for example, sitting through a movie might make it worse, but a walk would make it better) and warm, red or swollen joints. Generally, the SI joints are involved first but sometimes in women the neck is involved first instead. In women, peripheral joints (joints other than the spine) are also more often involved. Really any joint can be involved, but commonly hips, ankles, heels and knees are involved, besides the SI joints and spine.

Tests would be blood work (for HLA B27, CRP, ESR), x-rays and if those are normal, then an MRI. An MRI would show inflammation, not just damage, so is needed in the earlier stages of the disease.

Degenerative disc disease and osteoarthritis are MUCH more common than AS or SpA. But just in case, I wouldn't go back to a chiropractor till you've seen a rheumatologist. They are not recommended for people with SpA.
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I appreciate the helpful information. I will not be returning to the chiropractor anytime soon, if at all. I just don't think it's worth it to get 1-2 days of neck release to feel terrible after. My sacrum was also hurting earlier this week, as well as my lower back and hips, so I want to make sure I'm doing the right thing. My grandmother and aunt both have rheumatoid arthritis and my dad has a bad back with disk issues, so I'm sure - since I take after his side of the family - that something is going on there. My CRP was up the last time it was tested (though I don't remember the exact number) but it's been a while, so I'm interested to see where it's at. My new PCP said that rheumatologists in their medical group do extensive blood work and testing for all sorts of inflammatory disorders so she didn't even order it since I'll be getting a full workup next week. :)

The Flexeril is pretty strong. I only took half (2.5mg) earlier this evening to see how I'd react and, about an hour later, I fell asleep.
 
2.5 mg is a TINY dose, so you must be very sensitive to medications. Also check with your pharmacist if it can be cut - as far as I remember, it is not scored.

My daughters were prescribed 5 mg as 13-15 year olds. My younger one weighed 85 lbs or so, soaking wet.

It did help with sleep, because inflammation can cause muscle spasms.

Both my girls take 10 mg now, which is the adult dose. You do get used to it over time, though they are both pretty groggy during in the morning.

My older daughter works full-time though and has been taking Flexeril every night to help her sleep and get her through a particularly bad flare. She is about a 102 lbs.

RA is a totally separate disease from AS - totally different genes. The joints involved are different - usually hands and feet. If it is RA, you would usually see swelling and red and warm joints. In SpA, you may or may not see swelling/redness/warmth, depending on which joints are involved.

In RA, the SI joints are not usually involved. In fact, the spine is not usually involved except the cervical spine.

Good luck with your rheumatology appt. I hope they do some testing to figure out what is going on.
 
So things are not going so great for me. Last night I had a classic "reflux attack" with intense heartburn, regurgitation and severe chest pains. This is not normal at this stage, and should not be possible after a successful surgery. I have no choice but to go in again, probably to be admitted. It looks like the surgery has failed. Either it was made too loose to start with (maybe because an inexperienced resident performed it...), it's come loose, or I have an underlying issue that's undiagnosed.

Not sure what will happen, have almost lost all hope.

Hopefully something good will come of this hospital stay.
 
Maya142 said:
2.5 mg is a TINY dose, so you must be very sensitive to medications. Also check with your pharmacist if it can be cut - as far as I remember, it is not scored.

My daughters were prescribed 5 mg as 13-15 year olds. My younger one weighed 85 lbs or so, soaking wet.

It did help with sleep, because inflammation can cause muscle spasms.

Both my girls take 10 mg now, which is the adult dose. You do get used to it over time, though they are both pretty groggy during in the morning.

My older daughter works full-time though and has been taking Flexeril every night to help her sleep and get her through a particularly bad flare. She is about a 102 lbs.

RA is a totally separate disease from AS - totally different genes. The joints involved are different - usually hands and feet. If it is RA, you would usually see swelling and red and warm joints. In SpA, you may or may not see swelling/redness/warmth, depending on which joints are involved.

In RA, the SI joints are not usually involved. In fact, the spine is not usually involved except the cervical spine.

Good luck with your rheumatology appt. I hope they do some testing to figure out what is going on.
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Yes, I am HIGHLY sensitive to medications. I had two surgeries for ovarian cysts and benign endometrial hyperplasia. I was told the only way to help prevent further surgeries was to either get a total hysterectomy (I'm only 34) or go on hormones thru ABC. I do not handle most birth control methods well - I've tried MANY different kinds. The one I'm currently on seems to be well tolerated - Yaz (the generic form) - which I'm very thankful for. I told my new PCP that I'm sensitive to medications, that's why she recommended starting with the lowest dose first to see how I do. :)

I don't have any swelling or redness, so I doubt it's RA. I'm thinking it's probably plain osteoarthritis or AS - or a totally different animal. I'm just grateful to have a doctor who cares and I'm looking forward to the doctor's appointment next week so I can get some answers. My hip is very sore this morning. :(
 
Izzie, I’m so sorry you’ve had a setback. Are you already at the hospital? Did they tell you what happens now that things are bad again? I really hope you are treated better this time. Also hope they figure out what to do to give you some relief.
 
Jabee said:
Izzie, I’m so sorry you’ve had a setback. Are you already at the hospital? Did they tell you what happens now that things are bad again? I really hope you are treated better this time. Also hope they figure out what to do to give you some relief.
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Was in the ER for 9 hours, the surgeon came in for 2 minutes. Said the surgery has probably come undone, and it's like it was never done in the first place. I'm back on square one, it's like it was never performed. Didn't confirm with testing or anything, but he was convinced anyway. Didn't get any pain relief or help at all, wanted to increase my PPI dosage and just sent me home.

I am wrecked.

I can't go through another surgery.

The surgeon was rude and I'm not convinced he is right, but something is wrong. The only thing I got out of it was blood work that showed I don't have an infection and okay blood count.
 
I'm in constant pain and literally no one will help me. I've tried the ER, I've tried my surgeon's office, I've tried every medical professional I have access to and no one will help me. I'm a complete wreck, I've never been closer to feeling like I can't go on.

If I had actually helpful medical professionals around it wouldn't be so hopeless, but I have no hope, and no energy left. I don't know what I can do at this point. I'm not sure I will make it through this.
 
Someone has to help you Izzie.......start with your family doctor and if not helpful go back to the ER....or try a different hospital.
You certainly need help ....also a gastroenterologist might be a good move.
Just don’t give up..they cannot ignore you.
Feel better soon
 
MissLeopard83 said:
It got even worse after I posted - I'm a staffing coordinator and a nurse called out and I was unable to find a replacement. I was already feeling horrible and just wanted to go home and then had to deal with the stress of finding a nurse. I tell you, I was so tired - physically, mentally, and emotionally - by the time I left, I nearly cried while driving. My depression and anxiety are doing very well (I saw my psychiatrist yesterday and I'm doing fabulous) but my physical symptoms are really causing problems. :sign0085:

In other news, I am seeing my new primary doctor tomorrow! Please pray it goes well. I have to arrive 30 minutes before the appointment time and I have a lot to discuss with her. I hate that I have to change doctors but my primary is just not easy to get a hold of anymore and that doesn't look like it will change anytime soon...
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Sorry you had a rough day. Praying for your appointment.
 
Izzie, I’m literally about to cry for you. I cannot image how hopeless you must be feeling. You went through SO much torture with that surgery. Why won’t the doctors help you?! Why don’t they care?! I really don’t get it, but I’m so so sorry that you’re going through this. If you need to talk, or even just vent, I’m here. I’m honestly so mad for you.
When will you be moving? Hopefully there will be more helpful and caring doctors in the town that you’re moving to. Maybe it’ll even have a hospital with doctors who listen to you and don’t let potentially incompetent residents perform major surgery without even notifying you.....

MissLeopard, I’m so glad that your new doctor is so helpful! I know how exhausting it is having to explain everything to a new doctor. And then you never know how they’re going to react.....will they even believe you? But this doctor sounds like a great one! Can you have her visit my town and be my doctor too? Keep us updated on your upcoming appointment. I feel like more answers are on the horizon for you!
 
That sounds awful, Izzie! Do you have any friends who are medical professionals? I wish I could be of more help. Do you have anyone who can come with you to your next doctor’s appointment or to the ER and advocate for you? It’s really helpful to have someone who is feeling well speak up for you when you are too sick to do it yourself. Let’s be real: by the time we find ourselves at the ER we are too sick to explain, argue, defend, or even ask for anything. I’ve had a couple of really great ER doctors who took over my care when I’ve been in an awful flare and can’t eat or drink. But I’ve also had some who just couldn’t wait to get rid of me. Please try to find someone to go to with you to your doctor so you can get a reference to a surgeon who is actually interested in you.
 
My mother was with me in the ER and demanded many things but it's like talking to a wall. The treatment is horrendous. It's like they think you're some hysterical woman "complaining about a little heartburn". I feel like my chest is caving in the pain is so bad. Asked for pain medication before I left but they told me there's nothing they'll give me. I was crying and they stared at me, said "you'll just have to take your meds" (the PPIs I had explained moments before don't do anything for the symptoms or the pain) and then left.

I'm not sure moving is even an option anymore. I'm too weak and in too much pain. I can't eat at all, yesterday I had one small piece of bread and it was too painful so I couldn't eat anything else. When this was mentioned to the ER doc, he said I didn't look dehydrated and since I was coherent it wasn't an emergency.

I've lost so much weight and continue to lose lots every week. I feel that I am just wasting away. There aren't really any private healthcare options here since reflux is sort of a specialized field and I'm clearly such a complex patient. I'm sort of forced to try to deal with my surgeon now. The ER doc said too, no other doctor will really touch me since I'm so recently operated on.

My mother and I are desperate and have tried everything with no results. Today I called the surgical ward where I was hospitalized to see if they will admit me again, if there's some other surgeon there who can deal with it until my surgeon comes back hopefully next week. I did meet a few other surgeons there for rounds and they were pretty good at face value. Talked to a good nurse, and she was going to see what the doctors there said. Usually they do not admit patients that way, but she was sympathetic and would try.

I am not a fan of that place or my surgeon but honestly where we were yesterday was worse and I am desperate. At least my surgeon understands the disease. I don't believe any treatment I've received there is wrong or inappropriate, even though I've not been pleased with how exactly things have gone down. Every test I've had and treatment I've received has been the gold standard tests and treatments available, even though they haven't always worked.

Here's hoping... I'm just completely desperate at this point and cannot even see a future for myself beyond this pain.

ETA: A surgeon who saw me briefly post-op was available when I called and is ordering an emergency CT scan for me today. He was sympathetic and concerned. Hopefully this gets the ball rolling.
 
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akgirl said:
MissLeopard, I’m so glad that your new doctor is so helpful! I know how exhausting it is having to explain everything to a new doctor. And then you never know how they’re going to react.....will they even believe you? But this doctor sounds like a great one! Can you have her visit my town and be my doctor too? Keep us updated on your upcoming appointment. I feel like more answers are on the horizon for you!
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I felt so relieved when I left and felt attended to. I felt like all the time and effort I spent researching doctors covered by my insurance paid off. I won't have to see her more often than every 6 months (unless I get sick) but it's so important to have a PCP coordinating your care. I have so many specialists - endocrinology, gastroenterology, gynecology, allergy/immunology (though, I'm no longer going for allergy shots), psychiatry, and, soon, rheumatology - that I'm getting regular care. I might also see either an orthopedist and/or pain management specialist for my chronic pain since my hips and neck are just so sore all the time. The Flexeril is helping, but I can only take it when I'm home since it knocks me out. :)
 
Missleopard83
There is Spondyloarthritis which is not AS
But still arthritis of the joints
Ds has the juvenile version

http://www.spondylitis.org/Types-of-Spondylitis

There are versions associated with Crohns
And undifferentiated spondyloarthritis

Good luck

Izzie can you try your pcp (general doc )?
Do they have an after hours to call?
A surgery nurse ?
 
That is what I was trying to explain - MLP did it better ;). Axial spondyloarthritis is much more common. AS is a specific type of SpA and is only diagnosed when there is a certain amount of damage to the SI joints. Damage can take 7-10 years to develop, though of course, it can happen faster (took 3-4 years for my younger daughter who has severe AS). Some people with SpA progress to AS and others do not.

SpA is much more common in women than AS is. It is still arthritis - can involve any joint but the SI joints and hips are commonly involved.

Red flags for inflammatory arthritis would be morning stiffness. Stiffness and pain that gets worse with rest and better with activity. If peripheral joints (joints other than the spine - such as fingers, knees, ankles etc.) are involved, you would usually see some swelling and warm joints. Onset of the pain is before age 45 in most cases - in the early to mid 20s is most common.

However, most of the time, lower back pain is NOT inflammatory. It is often osteoarthritis or degenerative disc disease in adults. But you would need an MRI to be sure.
 
Maya142 said:
That is what I was trying to explain - MLP did it better ;). Axial spondyloarthritis is much more common. AS is a specific type of SpA and is only diagnosed when there is a certain amount of damage to the SI joints. Damage can take 7-10 years to develop, though of course, it can happen faster (took 3-4 years for my younger daughter who has severe AS). Some people with SpA progress to AS and others do not.

SpA is much more common in women than AS is. It is still arthritis - can involve any joint but the SI joints and hips are commonly involved.

Red flags for inflammatory arthritis would be morning stiffness. Stiffness and pain that gets worse with rest and better with activity. If peripheral joints (joints other than the spine - such as fingers, knees, ankles etc.) are involved, you would usually see some swelling and warm joints. Onset of the pain is before age 45 in most cases - in the early to mid 20s is most common.

However, most of the time, lower back pain is NOT inflammatory. It is often osteoarthritis or degenerative disc disease in adults. But you would need an MRI to be sure.
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I have so much to learn about the different types of arthritis and inflammation. I am trying to pay more attention to my symptoms and, yesterday, I noticed that I woke up with hip pain and it was pretty bad but it got better if I moved around. I came home and it got worse again. So, I'll have to remember to tell that to the rheumatologist next week. Still no warm joints but my right hip was painful to the touch yesterday. I took some Advil this morning (Tylenol does NOTHING) and rubbed Biofreeze on it which helped some, but it's still sore.

I got pretty annoyed with my mom a little while ago. I've had a stressful week at work (I work full-time) and wanted to just relax today so I can recharge and, when I told her my hip was bothering me, her response was, "You have too many ailments. I think you need to lose some weight and exercise more." When I replied that my hip hurts too much, she's like, "If I can do it with my chronic pain, you can do it." I got so frustrated with the lack of support, I literally closed my bedroom door and said, "I'm not listening to this..." It is so rude! She does not work and stays home QUITE A BIT but I don't tell her she needs to get out more or exercise more - that's her choice, not mine. Why is it that she feels the need to tell me how to manage my pain and discomfort? I'm definitely not OK with that. UGH! My depression and anxiety are doing so well but my physical body is not cooperating with me - that's why I'm seeing a doctor to see what can be done so I can get back to exercising! :(
 
When you say your hip hurts, is it on the outside? Is that where it hurts to touch?
 
Maya142 said:
When you say your hip hurts, is it on the outside? Is that where it hurts to touch?
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It was sore inside and outside, but there was like pain around the hip, too, because of sitting all day which caused more inflammation. I've already been diagnosed with greater trochanter bursitis but the pain is becoming more severe and is different, if that makes any sense. Before, it would just hurt due to changes in weather or during my time of the month. Now that I'm on continuous hormones for my ovarian cysts, I'm no longer getting menstrual periods, so I'm pretty sure this is not bursitis only. :(
 
That does sound like bursitis pain, especially if it is sore to touch. It may not be joint pain - there are a lot of ligaments and tendons in that area that can also cause pain.

Fibromyalgia may be something else to talk to the rheumatologist about, particularly if you have IBS (IBS and Fibromyalgia are a common combination).

Pain around the hip could be SI joint related or could be muscular.

True hip pain - pain coming from the hip joint - is felt in the groin. However, psoas tendonitis can also cause pain in the groin.

I hope the rheumatologist can give you some answers. You will probably need imaging to tell if this is some type of inflammatory arthritis or osteoarthritis/degenerative disc disease because the treatments are very different.

I would log your pain for the next week - what makes it worse, what makes it better. Are there specific times of the day when you are feeling better/worse. If you have stiffness how long does it last - that kind of stuff.

Exercise is actually one of the best treatments for chronic pain. I know it's REALLY hard when you are hurting, but gentle exercise helps. Things that are low impact are best - biking or swimming. Even when my daughters are flaring, their rheumatologists encourage them to exercise.

Weight loss can actually also make a big difference to joint pain - again, it is really hard to do when you're hurting. But the rheumatologist can probably start you on a prescription NSAID which should help with some of the pain until you figure out what is going on. Then if you feel better, it should be a lot easier to exercise.
 
Maya142 said:
That does sound like bursitis pain, especially if it is sore to touch. It may not be joint pain - there are a lot of ligaments and tendons in that area that can also cause pain.

Fibromyalgia may be something else to talk to the rheumatologist about, particularly if you have IBS (IBS and Fibromyalgia are a common combination).

Pain around the hip could be SI joint related or could be muscular.

True hip pain - pain coming from the hip joint - is felt in the groin. However, psoas tendonitis can also cause pain in the groin.

I hope the rheumatologist can give you some answers. You will probably need imaging to tell if this is some type of inflammatory arthritis or osteoarthritis/degenerative disc disease because the treatments are very different.

I would log your pain for the next week - what makes it worse, what makes it better. Are there specific times of the day when you are feeling better/worse. If you have stiffness how long does it last - that kind of stuff.

Exercise is actually one of the best treatments for chronic pain. I know it's REALLY hard when you are hurting, but gentle exercise helps. Things that are low impact are best - biking or swimming. Even when my daughters are flaring, their rheumatologists encourage them to exercise.

Weight loss can actually also make a big difference to joint pain - again, it is really hard to do when you're hurting. But the rheumatologist can probably start you on a prescription NSAID which should help with some of the pain until you figure out what is going on. Then if you feel better, it should be a lot easier to exercise.
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I was diagnosed with fibromyalgia by my former PCP - 2 PCPs ago - but my insurance does not cover her, so I can no longer see her. I try to do some stretches since my muscles can get pretty tense and, when I do hip/leg stretches, it hurts quite a bit in my hamstring area. Most of the pain is on the inner part of the hip, but it sometimes radiates to the outer thigh and buttock area. I've learned that pain from laying on the hip is a symptom of bursitis, so I know what that is caused by. I read that injections into the bursa can help when NSAIDs are not enough, so I'm not sure if that's an option, but I'm going to discuss it with the new doctor.

Anyway, the weather outside is changing again because we have another cold front moving thru and my body aches all over (I hope it's just from the weather and not me getting sick; I had a flu shot in November). I'm probably going to take a shower soon because that always makes me feel better - feeling clean and the warm water help quite a bit. :)
 
Well, I took a shower and did some hygiene things like clip my nails, putting lotion on, fixing my hair (it's still wet though, so I have to wait for it to dry), putting on clean clothes, etc. I feel much better. The warm water definitely helped - sometimes, I just like to stand underneath it and let it hit the sore spots. I used to hate heating pads, but now I love them. I even used the heated seats in my car this week to help my hips which felt really good. Now, I'm going to watch some TV, eat dinner, and probably go to sleep later. :)
 
Stretching is definitely good but aerobic exercise is also necessary for chronic pain. My daughters both are told to do half an hour of exercise a day. For the younger one, that is biking or walking. For the older one, usually going on the elliptical. When they are really flaring, they take it easier, but they still try to do it.

They also both try to swim once or twice a week.

Body aching all over sounds a lot more like fibromyalgia than inflammatory arthritis. But it could also easily be both or neither. I'm glad you will be seeing a rheumatologist soon.

An injection for bursitis is usually very easy and done in the office. My daughter had one and didn't find it pain. They inject a steroid. It helped her a LOT.
 
Had a CT scan today that showed no abnormalities. They do however clearly see acid irritation at the back of my throat. So I am still refluxing. The cause has yet to be determined. The likely explanation is probably that they made the wrap too loose.

Will be in contact with my surgeon on Monday. Meanwhile, suffering with pain and feeling the psychological toll this is starting to take.
 
I am so fatigued today. It actually started yesterday - I got this overwhelming wave of fatigue at church yesterday and thought I was going to fall asleep. I even thought about going out to the car to lay down, that's how tired I was. I had a good night's sleep - or so I thought - the night before so I'm not sure what caused it. I also had a headache and had to take Advil during church. I almost canceled plans to go see the Nutcracker last night, but I forced myself to go (I'm glad I did!). I'm definitely paying for it now. I could not get out of bed this morning without a struggle and now I'm sitting at work trying not to fall asleep at my desk. :(
 
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Izzie said:
Had a CT scan today that showed no abnormalities. They do however clearly see acid irritation at the back of my throat. So I am still refluxing. The cause has yet to be determined. The likely explanation is probably that they made the wrap too loose.

Will be in contact with my surgeon on Monday. Meanwhile, suffering with pain and feeling the psychological toll this is starting to take.
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Hope they can get you feeling better soon.
 
Izzie said:
Had a CT scan today that showed no abnormalities. They do however clearly see acid irritation at the back of my throat. So I am still refluxing. The cause has yet to be determined. The likely explanation is probably that they made the wrap too loose.

Will be in contact with my surgeon on Monday. Meanwhile, suffering with pain and feeling the psychological toll this is starting to take.
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I have really struggled to read your posts because I am so angry for you. I have closed out the windows several times because I cannot imagine anyone going thru what you are going thru right now. I still haven't read the whole thing but I wanted to tell you that you are in my prayers and I really hope you are able to get the help you need. I am so sorry that you have to face this - you are not alone though. :drink:
 
MissLeopard83 said:
I have really struggled to read your posts because I am so angry for you. I have closed out the windows several times because I cannot imagine anyone going thru what you are going thru right now. I still haven't read the whole thing but I wanted to tell you that you are in my prayers and I really hope you are able to get the help you need. I am so sorry that you have to face this - you are not alone though. :drink:
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I agree. You are not alone.
 
Hi Izzie:

Have you heard from your surgeon? I cannot imagine how unbelievably upsetting your situation is. Have they never been able to figure out why your reflux is so bad and why PPIs don’t help? I feel awful for you and wish I could actually do something. My reflux is—fortunately—well-controlled on dexilant twice a day, but when it isn’t controlled life is miserable. Hope you get some good news soon.
 
Saw my actual surgeon today, and he was rushed but actually not super dismissive. He is seriously doubting the fact that I still have acid reflux (as am I...) but he placed a pH probe so I'm having a 24 pH monitoring as we speak. Incredibly uncomfortable, more so than last time, but then again I did just have surgery. Strangely enough I've not had a single symptom since the darn probe was placed. Starting to think I'm actually going insane. But it makes you all phlegmy and I swallow a lot from the irritation so I guess that helps ease the usual burn. He thinks that food is gathering in the esophagus and not going down and I'm sort of... refluxing from within the esophagus which is irritating.

He wanted to do a scope but I need to be put under for scopes (sedation doesn't work on me, apparently I get aggressive) and there's just no way now before the holidays. If this shows acidic reflux he will do a scope after NY though. Or if my symptoms persist.

Now that he's actually super listening to me he's starting to think I maybe never really had reflux?? Or, of course I did, but that it was not the cause of my absolute worst symptoms. He says that if Gaviscon or similar drugs don't help even a little, the issue can't be reflux. To which I responded well then I guess I never had just reflux because that was always the case during my worst flares.

He agrees that the pain is in my esophagus and that's where the problem is, but he doesn't believe it is reflux. He's being quite humble about it though and saying he's not sure and you can never be certain so we're doing the necessary testing to be sure. Also got some liquid Oxycodone that's supposed to work locally as well for when my throat burns so much I basically just cry... Also gave me something for cramping/spasms in case that's what it is.

So it was a good meeting, he was helpful. He was upset with the other doctors and nurses who have given me conflicting advice and especially the doctor who said the surgery had likely failed. The CT clearly showed it has not and my surgeon called him ignorant and unprofessional :p

He wants me to ease off the PPIs. Which scares the heck out of me as I feel they are the only thing that helps. But as I've had mucous membrane reactions from other PPIs (blisters and extreme dryness from Omeprazole and Nexium) he feels that maybe the pain is in part a reaction to the meds.

tl;dr - First helpful appointment I've had since everything started going to hell. My surgeon is very good, he's just distracted and you really do have to make him hear you. When he does, I feel he makes the right choices.
 
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Izzie said:
Saw my actual surgeon today, and he was rushed but actually not super dismissive. He is seriously doubting the fact that I still have acid reflux (as am I...) but he placed a pH probe so I'm having a 24 pH monitoring as we speak. Incredibly uncomfortable, more so than last time, but then again I did just have surgery. Strangely enough I've not had a single symptom since the darn probe was placed. Starting to think I'm actually going insane. But it makes you all phlegmy and I swallow a lot from the irritation so I guess that helps ease the usual burn. He thinks that food is gathering in the esophagus and not going down and I'm sort of... refluxing from within the esophagus which is irritating.

He wanted to do a scope but I need to be put under for scopes (sedation doesn't work on me, apparently I get aggressive) and there's just no way now before the holidays. If this shows acidic reflux he will do a scope after NY though. Or if my symptoms persist.

Now that he's actually super listening to me he's starting to think I maybe never really had reflux?? Or, of course I did, but that it was not the cause of my absolute worst symptoms. He says that if Gaviscon or similar drugs don't help even a little, the issue can't be reflux. To which I responded well then I guess I never had just reflux because that was always the case during my worst flares.

He agrees that the pain is in my esophagus and that's where the problem is, but he doesn't believe it is reflux. He's being quite humble about it though and saying he's not sure and you can never be certain so we're doing the necessary testing to be sure. Also got some liquid Oxycodone that's supposed to work locally as well for when my throat burns so much I basically just cry... Also gave me something for cramping/spasms in case that's what it is.

So it was a good meeting, he was helpful. He was upset with the other doctors and nurses who have given me conflicting advice and especially the doctor who said the surgery had likely failed. The CT clearly showed it has not and my surgeon called him ignorant and unprofessional :p

He wants me to ease off the PPIs. Which scares the heck out of me as I feel they are the only thing that helps. But as I've had mucous membrane reactions from other PPIs (blisters and extreme dryness from Omeprazole and Nexium) he feels that maybe the pain is in part a reaction to the meds.

tl;dr - First helpful appointment I've had since everything started going to hell. My surgeon is very good, he's just distracted and you really do have to make him hear you. When he does, I feel he makes the right choices.
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If the pain is coming from your esophagus and is not acid reflux, I wonder if he is thinking esophageal hernia (aka hiatal hernia)? If that's the case, most get relief from PPIs or H2 blockers, but some require surgery to fix. I think a scope is the best way to determine if it's more structurally related. Have you ever had ketamine for sedation instead of commonly used sedatives like Versed or Propofol? A girl who keeps a daily vlog on YouTube cannot handle common sedatives either because she gets VERY aggressive/combative. However, anesthesiologists have given her ketamine instead and, while she gets loopy, she has none of the bad side effects like the other sedatives.

https://www.jwatch.org/na43505/2017/02/23/ketamine-first-line-agent-sedation-agitated-patients
 
MissLeopard - I just did have surgery for a 5 cm hiatus hernia 4 weeks ago which is why everyone's so confused as to what the heck is going on. PPIs have been largely ineffective. I think what he's thinking now is I have an unrelated esophagus issue that may be the reason why PPIs were not effective prior to surgery, and why I'm still having symptoms now.
 
Izzie said:
MissLeopard - I just did have surgery for a 5 cm hiatus hernia 4 weeks ago which is why everyone's so confused as to what the heck is going on. PPIs have been largely ineffective. I think what he's thinking now is I have an unrelated esophagus issue that may be the reason why PPIs were not effective prior to surgery, and why I'm still having symptoms now.
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Sorry, I must have missed that part. Did he ever mention the possibility of esophageal diverticulum? It's basically where a pouch forms in your esophagus and food can get trapped in there with no way to get out. It can lead to regurgitation, the feeling of acid in the back of your throat, and the food can grow bacteria leading to infection. If a scope is done, they should be able to see it as that is the best way to diagnose the disorder. It could explain why the PPIs aren't working since it's further up in the esophagus.
 
MissLeopard83 said:
Sorry, I must have missed that part. Did he ever mention the possibility of esophageal diverticulum? It's basically where a pouch forms in your esophagus and food can get trapped in there with no way to get out. It can lead to regurgitation, the feeling of acid in the back of your throat, and the food can grow bacteria leading to infection. If a scope is done, they should be able to see it as that is the best way to diagnose the disorder. It could explain why the PPIs aren't working since it's further up in the esophagus.
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I think my surgeon is suspecting soooomething sort of similar to this. He thinks food etc. is gathering right above the wrap site. I'm not sure he thinks there's been any anatomy change like diverticulum but even just the surgery and the swelling could cause food/pills/liquids to stay in the esophagus for too long. That's sort of the theory we're hoping for because he thinks with time and as swelling goes down it could fade away on its own. What I find frustrating and suspicious is the fact that things come and go in "flares" the exact same way as it did pre-op. I don't see why it would behave the exact same way if the cause is suddenly different. One day, I can eat sort of whatever and not have a huge issue. I had hot chocolate the other week and stuff and was fine. And then this sort of flare starts - very suddenly - where out of the blue I feel like I have the worst heartburn I've ever experienced, my throat turns red, and suddenly I can barely eat anything. And every morning when I wake up during flares it feels like I've been bathing my throat in acid - like I have the nastiest case of strep - and then as soon as I eat, the burning comes back and stays until... well until the next morning when I "just" have the sore throat again before breakfast...

When I "flare" my throat and sort of beginning of the esophagus turns BRIGHT RED (has been seen on laryngoscopy) and the burning doesn't go away for days, sometimes weeks. Reflux meds don't work and sometimes have been suspected as a cause for it, even, since I've had some reactions to them before. It comes on so suddenly that I've sometimes thought it seems like an allergy of some kind. No idea to what it would be, however. It does act like sudden bouts of inflammation, sort of, but I don't think Crohn's or similar would ever start in the esophagus and not really migrate elsewhere over the course of several years?

Everything is kind of a blur and we're not sure what it is, but over the holidays not much of anything can be done so I'm just trying to wait it out at this point. I feel like this flare has already settled a little bit so hopefully things will stay calm at least for the coming weeks until after NYE. I think he's probably going to want to do an endoscopy with biopsies if this keeps up.

To him, the post-operative issues should start to fade away at about 2-3 months post op so if I'm still having these problems after that I will need to be evaluated further for other problems.
 
Izzie:

I forget exactly what sort of tests you’ve had done (I suspect all of them!), but have you been checked for EOE? And endoscopies have found no gastritis? Or evidence of gastritis? You just had a CTE so that is fairly comprehensive. Have you had an upper GI series? I’m trying to brainstorm possible directions your care could take.
 
Jabee said:
Izzie:

I forget exactly what sort of tests you’ve had done (I suspect all of them!), but have you been checked for EOE? And endoscopies have found no gastritis? Or evidence of gastritis? You just had a CTE so that is fairly comprehensive. Have you had an upper GI series? I’m trying to brainstorm possible directions your care could take.
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Have NOT been tested for EOE. My surgeon was so certain after my endoscopy (without biopsies) that what he was seeing was acid damage that he was irritated with me for continuing to ask about it. Now, I think he's not so sure anymore. I did have reflux, absolutely, but if I don't now I probably have something else and then EOE will be back on the list.

I'm going to insist on biopsies next time. As far as I know no gastritis, and my pain is very much in the upper chest/throat area as opposed to what I would associate with stomach pain which would be a tiny bit lower. I've had barium swallow, small bowel CT, x-ray of the esophagus to look for diverticula, 3 upper scopes, 1 colonoscopy, stomach CT, manometry, 2 pH studies and 3 laryngoscopies. Basically the works.

But this particularly unbearable intense burning only started this year after I was put on Nexium which I later turned out to not tolerate (developed blisters in the mouth and throat, as well as had EXTREME dryness in the throat, mouth and eyes) and has persisted now as I've been on pantoprazole. Only in "flares" though. I've not had any testing other than this past week's pH study and CT since I've had that particular burning. Oh and a laryngoscopy this past summer when the burning was at its worst which showed redness. The dr could only see the very opening of the esophagus but commented that it looked extremely red.

Honestly my first year of reflux disease I only had heartburn very very rarely. My primary symptoms were regurgitation, left sided rib pain, and completely insane belching (we're talking several hundred times per hour). Then gradually started having more heartburn and chest pain and then this year it's been just the absolute worst with such intense heartburn it feels like my throat and chest are going to burn right through. The flares come on suddenly without any discernible trigger (though often I can point to a thing or two that are "bad" that I ate that day), and then lasts for days and sometimes weeks no matter what medications I take or what I eat or don't eat. If I hardly eat at all I feel like it fades faster.

At first I thought it was just an effect of Nexium since I clearly didn't tolerate that medication well, but I've had about 3 flares the past 4 months and I've only been on pantoprazole for that time.
 
I hope things improve Izzie. I feel for you, these diseases are terrible at best. Hang in there, it sounds like something good must be finally about to come up. It can only go this bad for so long... I think it's time for a change of fortune.
 
Being able to brainstorm out loud here with you guys' input and support has meant the absolute world to me ever since I first got sick 3 years ago. I too am hoping for better times ahead!
 
Been flaring like crazy again today and apparently my surgeon is out for the holidays...

pH monitoring showed no acid. As in NONE. I didn't have a lot of symptoms for the duration but still if I had had acid reflux still it would've showed when I was laying down flat all night at least. So, this is something else. It's probably always been something else.

I'm starting to suspect a wheat/gluten allergy. Or a reaction to some other common allergen. Wheat and dairy are prominent in my diet and if I somehow have a reaction to either of them it makes sense why I never get any better.

Also suspect a reaction to the PPIs since I've had issues with mucus membranes before on them. I mean it doesn't really make sense since I've been on PPIs all along and this still comes and goes? But it's worth a shot to taper off if I'm not even having reflux anymore. They're clearly not doing any good.

Not sure what the heck to do. Access to doctors is a HUGE problem especially this time of year but honestly ER doctors and GPs don't understand what's going on with me so either of those is nothing but a waste of time. I have tomorrow to try to get a hold of someone at my surgeon's clinic again but if I can't then... I'm not sure how I'll survive until 2018 with this darn pain. They gave me liquid Oxycodone which I tried last night but somehow it just made it even worse. It's like some sort of... nerve pain/burning thing, normal pain medication does not take at all.
 
Izzie—

What else (aside from oxycodone) is in the liquid oxycodone? If it made things worse, maybe it’s a reaction to something in it. The same could be true of PPIs. I have celiac disease but didn’t go on PPIs until they found inflammation in my duodenum from what later turned out to be crohn’s. I’m also wondering if you could have bile reflux. Regular PPIs don’t help that at all. Below is some information about bile reflux from the Mayo Clinic.

https://www.mayoclinic.org/diseases-conditions/bile-reflux/symptoms-causes/syc-20370115
 
Today was an interesting day, to say the least. I had the day off and started with a cervical spine x-ray series at 8:30am. I asked for a copy of the images and got them on disc. I won't get the radiologist's report until after Christmas, most likely, but I looked at my images on my computer and imagine my surprise when I saw something I've never seen before! I have two extra ribs in my lower neck! They are called cervical ribs and only 1 in 200 people have them. I remember my chiropractor mentioning something about it the first time I saw him and now I know what he was talking about! This could very well be causing most of my neck pain so it was very interesting! Reading online, I saw that a small percentage of people with cervical ribs can get something known as thoracic outlet syndrome which is where the extra ribs compress nerves leading to numbness, weakness, and tingling in the arms and they can cause your neck to be more forward so it causes extra strain (I constantly find my neck more forward - I thought it was just due to poor posture). I'm not sure if there is anything structurally wrong with my neck since it's difficult to tell but I'm hopeful the radiologist will be able to provide answers.

Also, I met with my first rheumatologist today and she was very nice, but VERY softspoken. She's Indian and very smart, too. She did a thorough medical history and physical exam and noticed I have very tender areas in my lower spine when she placed pressure on them so she ordered x-rays of both my lower back and pelvis which I will be getting done the day after Christmas before going to work. She also ordered a plethora of blood work! I'll be getting that completed either tomorrow or Saturday - I kind of wonder if I'll have any blood left afterward, LOL! Just kidding! She also mentioned that I am somewhat hypermobile in my joints - especially in my hips and ankles. She doesn't have much experience dealing with hypermobility, but my intuition was right! I am going to be looking online to see where to go for more input - perhaps an orthopedist would know more? If anyone has any ideas, let me know!

The job interview, however, did not go well at all. It is definitely not my fault - it was poor planning on the company's fault since they did not communicate with the recruiter what they were looking for, so I'm going to continue the search. At least I still have my job for the time being while I keep looking!
 
Jabee said:
Izzie—

What else (aside from oxycodone) is in the liquid oxycodone? If it made things worse, maybe it’s a reaction to something in it. The same could be true of PPIs. I have celiac disease but didn’t go on PPIs until they found inflammation in my duodenum from what later turned out to be crohn’s. I’m also wondering if you could have bile reflux. Regular PPIs don’t help that at all. Below is some information about bile reflux from the Mayo Clinic.

https://www.mayoclinic.org/diseases-conditions/bile-reflux/symptoms-causes/syc-20370115
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It was full of various acids and tasted like very sour lemon so I think probably the acid was an irritant and that's what made the burning worse. If what I have is "only" left-over inflammation and irritation drinking something that's like a pure acid is not going to help :p

As for bile reflux, it's a possibility that's been suggested, but shouldn't surgery keep that from coming up too? I have had pH monitoring with impedance that only suggested acid reflux, and the pH monitor I had now (without impedance) showed no reflux. I've definitely had a reaction to something in PPIs. It's only been some brands and I've had extreme dry mouth, sore throat and blistering. So easing off the drugs while scary is probably a good idea to try for me at this point.

I'm giving up over the holidays :shifty: No one's really available, my surgeon has his theories and doesn't think I'm about to die or anything but that this will resolve itself (if it's inflammation or food gathering above the wrap and irritating or whatever else "normal") or we'll do a scope to check in january. So, I don't really have anywhere left to turn at this point. At least the drugs I got yesterday helped a little bit so maybe I can keep taking them when it gets really bad. The stress of seeking care and trying to make people listen has really gotten to me too and I just need a break from it. I've also noticed that any doctor other than my surgeon is kind of useless. They have their own (wrong) theories and don't help me anyway so everything just becomes extremely stressful and a waste of time if I go to the ER or something. The instinct when something hurts is to have someone fix it but I've tried to do that for a week now without results so I guess I just have to try to be where I am for a while and deal with it.

I've told my family: if I pass out or something - call an ambulance, but if not I think I'm mostly going to pretend like everything's sort of fine for a few weeks even though they're not.

Think I'm going to try to back off to a diet of mostly soft foods and liquids. If irritation is the culprit eating rough things probably hurts on the way down and starts of more of an inflammation response.

Thanks for your ideas and input, Jabee. I will definitely ask about bile reflux as a possibility at my next appointment.
 
I really wish you didn’t have to suffer so much before someone finally figures out what is happening. I once had a neurologist who told me I had chronic migraines because I was “doing too much for my children”—when they were all under 10. He was on his second marriage at that time and had probably never had a headache in his life. I switched to the neurologist who treated my Lyme disease. She gets migraines herself and I am getting fewer headaches because she understands and brainstorms with me. That's what my old GI was like. My new one can’t see me until next July so if I flare again (which I already am) I’ll have to suffer or go to the ER. I think they should check for EOE during your next scope. Have you tried carafate or sucralfate for the reflux/whatever it is? I’ll continue to think and I’ll try to get creative with my ideas. I hope you improve rather than continue this way.
 
It is possible that I'm just having a particularly rough healing period. I don't believe it, because it's behaving the same way it always has? But there is a chance that it will just fade away with healing. Here's hoping...
 
Missleopard
hypermobility is a common and benign condition90% of the time
It just means you have more flexibility
But if you don’t exercise enough the joints flop
You need to have string muscles around the extra stretchy tendons
It can be part of elthers danlos Syndrome
But again still benign for a large percentage
Runs in family’s

My kids and I are all hyoermobile
Only Ds has Crohns and arthritis as well

Hyper mobility is not a factor in spondyloarthritis
 
She also mentioned that I am somewhat hypermobile in my joints - especially in my hips and ankles. She doesn't have much experience dealing with hypermobility, but my intuition was right! I am going to be looking online to see where to go for more input - perhaps an orthopedist would know more? If anyone has any ideas, let me know!
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Yes, my girls and I are hypermobile too. It is easy to manage as long as you make sure your muscles are strong. Exercising regularly will help. Some people need physical therapy. It can be painful in the beginning but it is really important to exercise.

Izzie, if you haven't tried Carafate, I'd ask for that. My daughter had horrible reflux but PPIs just did not help at all - even at high doses. Eventually we switched to Carafate and it worked like magic. Her symptoms were severe stomach pain which sometimes radiated to her back, heartburn, nausea, sore throat etc. Carafate too a little while to help, but it helped a LOT. She has Gastroparesis, reflux (both bile and acid reflux) and delayed gastric emptying are a VERY common combination.
 
Maya142, I didn’t know that reflux and delayed gastric emptying can go hand in hand. It makes sense, of course. But during scopes they can only see the hiatal hernias (of course). I never would have thought of that for Izzie.
 
Maya142 said:
Yes, my girls and I are hypermobile too. It is easy to manage as long as you make sure your muscles are strong. Exercising regularly will help. Some people need physical therapy. It can be painful in the beginning but it is really important to exercise.
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I forgot to mention that the rheumatologist is ordering both a lower spine x-ray and pelvis x-ray. She was checking various pressure points and I was extremely tender in my sacral area - especially my tailbone. It surprised me as to how tender I am. I'm getting the x-rays done the day after Christmas before I go into work at the same place I had the neck x-rays done 2 days ago. I have a follow-up appointment scheduled with the rheumatologist in 3 weeks to go over the lab work and x-rays and she will make a care plan. She already gave me some helpful tips and advice on diet and sleep hygiene, so I'm hoping that will help. :)
 
Maya142, I didn’t know that reflux and delayed gastric emptying can go hand in hand. It makes sense, of course. But during scopes they can only see the hiatal hernias (of course). I never would have thought of that for Izzie.
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Yes, my kiddo has BAD reflux. Bile reflux was the worst - bile is so corrosive. She has a G tube, so we could actually see bile leak out from the stoma!! At that point, we were giving her Carafate 3x per day and that helped a lot.

MissLeopard83, do you know what the x-rays are meant for? Just wanted to add that if they are for SpA, generally damage on x-ray does not show up till much later in the disease course. It can take 7-10 years for damage to appear on x-ray, though of course it can happen faster (took 3-4 years for my younger daughter).

But anyway, because x-rays only show damage, they are not so useful in the early stages of the disease. MRIs show active inflammation, so are more useful. Generally, most doctors will make you do an x-ray first and then an MRI (because often insurance companies won't cover MRIs unless you have done x-rays).
 
Maya142 said:
Yes, my kiddo has BAD reflux. Bile reflux was the worst - bile is so corrosive. She has a G tube, so we could actually see bile leak out from the stoma!! At that point, we were giving her Carafate 3x per day and that helped a lot.

MissLeopard83, do you know what the x-rays are meant for? Just wanted to add that if they are for SpA, generally damage on x-ray does not show up till much later in the disease course. It can take 7-10 years for damage to appear on x-ray, though of course it can happen faster (took 3-4 years for my younger daughter).

But anyway, because x-rays only show damage, they are not so useful in the early stages of the disease. MRIs show active inflammation, so are more useful. Generally, most doctors will make you do an x-ray first and then an MRI (because often insurance companies won't cover MRIs unless you have done x-rays).
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We discussed so much that I don't remember exactly what she was looking for - I think she was probably ruling out any arthritis. I am still waiting for the patient summary to be uploaded to the portal. She sent it thru the day of our appointment but it takes a while to show up - about 2-3 business days from my experience with this particular group. I've never had an MRI done of my pelvis or lower back so I might mention this to her at our next appointment in 3 weeks.

The good news is that she is checking all the inflammation markers in my blood work - including C-Reactive protein, ANA (2 different tests), and sedimentation rate. I just need to get to the lab to get it done. :)
 
X-rays can’t rule out arthritis
That is what Maya142 was trying to say
You can have spondyloarthritis (a specific type of arthritis) which doesn’t show up on X-rays at first even if you active arthritis there
It will only show up mri


Good luck
 
my little penguin said:
X-rays can’t rule out arthritis
That is what Maya142 was trying to say
You can have spondyloarthritis (a specific type of arthritis) which doesn’t show up on X-rays at first even if you active arthritis there
It will only show up mri


Good luck
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I really don't remember what it was for - the x-ray requisition orders just state "low back pain at multiple sites" but the lab orders state, in addition, "chronic neck pain" and "diffuse pain." I knew this visit would be somewhat complex and I'm starting to wish that I had made some of my own notes while I was there to remember most of what she said. This is the first time visiting a rheumatologist so I didn't know what all to expect, but I will be more prepared next time I see her.
 
Yes, sorry that is exactly what I was trying to say. That in the early stages of SpA, nothing will show up on x-ray. That's why an MRI is necessary to fully rule out SpA.

It sounds like the rheumatologist is just covering all bases by doing x-rays - it doesn't necessarily sound like she suspects SpA (it actually sounds like she suspects fibromyalgia) but given your lower back pain, it is worth ruling out.
 
Maya142 said:
Yes, sorry that is exactly what I was trying to say. That in the early stages of SpA, nothing will show up on x-ray. That's why an MRI is necessary to fully rule out SpA.

It sounds like the rheumatologist is just covering all bases by doing x-rays - it doesn't necessarily sound like she suspects SpA (it actually sounds like she suspects fibromyalgia) but given your lower back pain, it is worth ruling out.
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I'm suspecting fibromyalgia and/or chronic fatigue syndrome, too (CFS, more so). I was already given a preliminary diagnosis back in 2011 by my former PCP but she didn't do any further testing to rule out other problems. Now that the symptoms have gotten worse, I thought it would be a good idea to go to someone who knows more about fibromyalgia.

The problem, I'm finding, is that more doctors are willing to treat FM than CFS. There are a LOT of overlapping symptoms - CFS and FM can be comorbid disorders in a certain percentage of patients. When she did the physical exam, I only had tender pressure points in my lower back/pelvic area and upper arm/shoulder areas (consistent with bursitis that my chiropractor diagnosed me with). There are supposed to be a wide range of sore pressure points in FM but they aren't apparent in CFS. Both of them cause fatigue and chronic, diffuse pain. There is no actual diagnostic test for either disorder so it's a diagnosis of exclusion in both cases.

I definitely don't want to have some autoimmune disorder in addition to Celiac disease but my chiropractor recommended I see one because of my recurrent symptoms and because I have a family history of autoimmune disorders (rheumatoid arthritis). When I mentioned it to the PCP, she thought it was a good idea too to cover all my bases. :)
 
MissLeopard83 said:
I'm suspecting fibromyalgia and/or chronic fatigue syndrome, too (CFS, more so). I was already given a preliminary diagnosis back in 2011 by my former PCP but she didn't do any further testing to rule out other problems. Now that the symptoms have gotten worse, I thought it would be a good idea to go to someone who knows more about fibromyalgia.

The problem, I'm finding, is that more doctors are willing to treat FM than CFS. There are a LOT of overlapping symptoms - CFS and FM can be comorbid disorders in a certain percentage of patients. When she did the physical exam, I only had tender pressure points in my lower back/pelvic area and upper arm/shoulder areas (consistent with bursitis that my chiropractor diagnosed me with). There are supposed to be a wide range of sore pressure points in FM but they aren't apparent in CFS. Both of them cause fatigue and chronic, diffuse pain. There is no actual diagnostic test for either disorder so it's a diagnosis of exclusion in both cases.

I definitely don't want to have some autoimmune disorder in addition to Celiac disease but my chiropractor recommended I see one because of my recurrent symptoms and because I have a family history of autoimmune disorders (rheumatoid arthritis). When I mentioned it to the PCP, she thought it was a good idea too to cover all my bases. :)
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Agree
 
Has anyone experienced myofascial release? I just found a physical therapy center that performs it and they said it could benefit fibromyalgia, bursitis, and chronic fatigue syndrome - to name a few. I'm going to ask the rheumatologist when I see her in 3 weeks since my insurance covers the rehab center. At this point, I'd like to stay away from narcotics and I'm trying to limit my Advil usage so I'm hoping this might help.

https://www.spine-health.com/treatment/physical-therapy/myofascial-release-therapy
 
Yes, my daughter's physical therapist does it for her often. It helps her with muscle pain a lot. She does not have fibromyalgia, but does have a pain syndrome (amplified pain or hypersensitive nerves due to long-term inflammation in her joints because of her severe AS).

It helps a LOT but you need to make sure you have a good physical therapist. Her physical therapist usually does myofascial release at the beginning of the session and massages her back (inflammation can cause muscle spasms and due the AS she has also lost a lot of spinal mobility which has led to more muscle issue) and then they focus on strengthening exercises.

Aerobic exercise such as walking, swimming or biking is also recommended and helps her a lot.

I believe the tender point criteria aren't really being used as much anymore for fibromyalgia. As you said, it is a diagnosis of exclusion, so your rheumatologist has to rule out various types of inflammatory arthritis, which is probably why the x-rays (especially since you have a family history). But fibromyalgia does cause diffuse muscle pain (and joint pain), difficulty sleeping and is often associated with IBS and other functional disorders.
 
Happy holidays everyone!

Christmas celebration with my family really put into perspective just how much this surgery has changed things for me. I've realized I've most likely had a problem with overeating for most of my life. Now, my body tells me very clearly when its had enough, and I can't really get the same kind of uncomfortably stuffed anymore that I recall always feeling during the holidays. I feel full much faster, which makes sense considering my stomach is 1/3 smaller now compared to before.

I was upset at first when I noticed I had to stop eating a few bites in but looking around now I'm starting to see through the "tradition" of eating yourself sick in celebration, and am pretty happy with my new built-in brake system :p

Instead of taking the post-dinner comatose "nap" with everyone groaning over having eaten too much, I went for a walk. Feels like a much healthier approach moving forward...
 
Izzie said:
Happy holidays everyone!

Christmas celebration with my family really put into perspective just how much this surgery has changed things for me. I've realized I've most likely had a problem with overeating for most of my life. Now, my body tells me very clearly when its had enough, and I can't really get the same kind of uncomfortably stuffed anymore that I recall always feeling during the holidays. I feel full much faster, which makes sense considering my stomach is 1/3 smaller now compared to before.

I was upset at first when I noticed I had to stop eating a few bites in but looking around now I'm starting to see through the "tradition" of eating yourself sick in celebration, and am pretty happy with my new built-in brake system :p

Instead of taking the post-dinner comatose "nap" with everyone groaning over having eaten too much, I went for a walk. Feels like a much healthier approach moving forward...
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I'm glad you are finding the positive in your circumstances. Hope this Christmas continues to lift your spirits. :)
 
I hope everyone had a better Christmas than I did. Wow, I'm so glad it's over! I usually love this holiday but it seems like everything came crashing down tonight at my grandparents' house - my grandfather has late-stage Alzheimer's and is bedbound and my grandmother is completely demented, herself, and delusional. I felt like I had 5 anxiety attacks over there in a span of less than 3 hours and will NOT be subjecting myself to that again. I didn't even want to go in the first place but my mom guilt-tripped me into it because she made dinner. I just need to separate myself from it completely before I lose my mind. She really needs to be in a 24-hour care facility. It's super sad but also scary at the same time how bad she is. She started getting physical with me when I got in the middle of her and my mom because she was about to hit my mom. She has NEVER hit me before and it's so hard to remember that it's the disease not her. :(

Anyway, I woke up with bad body aches all over but forced myself to attend Church and then came home, opened presents with my family, and laid down for a nap where I noticed I had a pretty bad sinus headache from all the Christmas trees and wreaths at Church in addition to the incense. My head was pounding! I finally took some Advil AND Tylenol after a while and got it under control, but I would have missed dinner if I could since I still wasn't feeling well. I'm supposed to go back to work tomorrow but I may use my FMLA for a mental health day or try and leave early. I am so anxious right now that I'm trying to watch TV to get my mind off of tonight's horror show but it's so difficult to know that my grandparents aren't who they used to be at all. :(
 
I had my pelvic and lower back x-ray series done today and also received the report from the neck x-ray series I had on Thursday. This is what the report states:

FINDINGS: No evidence of cervical spine fracture or subluxation. No significant degenerative disc disease changes. Left-sided facet joint sclerosis and hypertrophy at C4-5. Prevertebral soft tissues appear normal.

IMPRESSION: No evidence of cervical spine fracture or subluxation. Prominent localized facet joint arthropathy at C4-5 on the left.

So, I have arthritis in my neck. I will be contacting my primary doctor's office later today to make sure they received the report and also ask what I need to do. I received the disc for the series I got today and looked at it and I definitely see some inflammation and arthritis in my back and pelvis, including what looks like inflammation of my sacroiliac joint. I'm wondering if physical therapy might be a good idea or if the doctor will recommend injections. Very interesting to see, for sure.
 
Inflammation cannot really be seen on an x-ray. What you can see on an x-ray is damage - erosions, sclerosis etc. To see active inflammation, you really need an MRI.

I would wait till you get results from the pelvic x-rays and then talk to your rheumatologist. If the SI joints show changes that are typical for AS, then your treatment will be very different from osteoarthritis treatment.

Did you get your blood work results back yet? Did they test for HLA B27 by any chance? Or any of the RA blood work - RF or anti-CCP? What about ESR and CRP?
 
Maya142 said:
Inflammation cannot really be seen on an x-ray. What you can see on an x-ray is damage - erosions, sclerosis etc. To see active inflammation, you really need an MRI.

I would wait till you get results from the pelvic x-rays and then talk to your rheumatologist. If the SI joints show changes that are typical for AS, then your treatment will be very different from osteoarthritis treatment.

Did you get your blood work results back yet? Did they test for HLA B27 by any chance? Or any of the RA blood work - RF or anti-CCP? What about ESR and CRP?
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I actually have not had the blood work done yet. My rheumatologist requested labs for RF, CRP, anti-CCP, ESR, and ANA (3 different tests). She did not request HLA-B27 but I'm going to request that at my next appointment because I've read it's important for certain diagnostic criteria - including AS.

ETA: I have to fast for 2 of the tests in the bloodwork so I'm planning to have it done this coming Saturday. :)
 
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The heating pad is my best friend tonight. Laying on that hard table for the x-rays this morning caused some soreness in my pelvic area so I'm laying on a heating pad and took some delayed-release Tylenol (I bought some Tylenol for arthritis which is a higher dose but you only take 2 every 8 hours so it lasts longer). Hoping I'm able to get some sleep tonight. I may bring my heating pad to work with me tomorrow if it doesn't get better by morning.
 
It seems like several of us here deal with chronic pain, so I thought I'd mention something strange I've always had that popped up again now when I was at my parents' house.

When I've gotten cold or sat in a draft, I get terrible pain in my limbs that radiates between joints and almost feels like pain in the bones. I've had this pain since I was a small child, but back then everyone called it growing pains. My parents' house is quite drafty, and I've had terrible trouble with pain in the past few days. The pain goes away with a Tylenol, but it's quite irritating since I can't sit in an office or a car with A/C on without pain, no matter how hot it is. I can't even wear shorts in the summer because the slightest cool breeze will leave me in pain for the rest of that day or until I use a heating pad for hours or take Tylenol...

Have any of you experienced anything like this? I've been to my GP with it in the past but they just blame my hypermobile joints and don't treat it further. My current home is an apartment in a new building that is not drafty at ALL and I've had much less pain since I moved here, but when I spend a day outside or at someone else's house it pops right back up. It seems to be worse in flares but overall hasn't really gotten better or worse since I was little.

What made me think of it was this evening I got home from being outside, and had some pain earlier in the day but nothing too bad. And then I picked up a bottle of perfume and sprayed it on my arm. As the bottle had been in my bag it was quite cold and I immediately felt the same pain in my arm when the cold hit. Really, immediately. And then it stuck around until I took a Tylenol. I found that odd and wondered if someone else has experienced such strange sensitivity to cold.
 
Izzie, it could “just” be extreme sensitivity to cold. Have you had your thyroid checked? I think hypothyroidism can cause people to become extremely sensitive to the cold. If your fingers or toes were turning blue (or white or red) then I’d suggest Raynaud syndrome but it doesn’t sound like that. Are you anemic? People with anemia are often more sensitive to the cold. My Mom doesn’t seem to be in pain with it, but she has always been cold, even during the summertime. Sorry not to be of more help.

How is the pain and/or reflux? Any better?
 
Jabee said:
Izzie, it could “just” be extreme sensitivity to cold. Have you had your thyroid checked? I think hypothyroidism can cause people to become extremely sensitive to the cold. If your fingers or toes were turning blue (or white or red) then I’d suggest Raynaud syndrome but it doesn’t sound like that. Are you anemic? People with anemia are often more sensitive to the cold. My Mom doesn’t seem to be in pain with it, but she has always been cold, even during the summertime. Sorry not to be of more help.

How is the pain and/or reflux? Any better?
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It's calmed down but I still have burning. It doesn't seem to be reflux though, since it doesn't seem to be triggered by "reflux triggers". Eating triggers it, but not from acid, I don't think. Could be my motility issue causing problems...
 
Has anyone tried tart cherry for joint pain (specifically osteoarthritis)? If so, did it work?

I was doing research to explore my options before going to the rheumatologist again on 1/12 and really want to stay away from narcotics as much as possible - they help but I definitely don't want to become addicted and I don't like the GI side effects (if you know what I mean). Anyway, I read quite a bit on Celebrex and may discuss that with her but I also read on HealthLine that tart cherry can help quite a few forms of arthritis. I went on Amazon and was looking at the various supplements and spotted one that is 2500mg and so many people said it was very helpful for arthritis pain. I'm all for natural stuff that doesn't interact with my other medications. :)
 
We have tried Tumeric and fish oil for my daughters, for inflammatory arthritis. We did not notice any difference.

Generally narcotics are not used for osteoarthritis except in very severe cases. They would use Celebrex and Tylenol first and try procedures like a steroid injection into the affected joint (in your case, I think it was facet joints). Radiofrequency ablation is another procedure that can be used if the steroid shots are successful.

Physical therapy should also help with pain.
 
I got the all clear from a nurse to remove all dressings from my incision today! Yes! I've had tape on me for 5 weeks straight I'm over it. It looks super ugly, though. The staple marks are totally going to scar and are here to stay. I was hoping that this wouldn't really bother me but it actually does really bother me. It looks brutal and ugly and red and just... yeah. I don't like it. If it fades to white with time I'll tolerate it probably but right now I really hate it.
 
Maya142 said:
We have tried Tumeric and fish oil for my daughters, for inflammatory arthritis. We did not notice any difference.

Generally narcotics are not used for osteoarthritis except in very severe cases. They would use Celebrex and Tylenol first and try procedures like a steroid injection into the affected joint (in your case, I think it was facet joints). Radiofrequency ablation is another procedure that can be used if the steroid shots are successful.

Physical therapy should also help with pain.
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Tylenol Arthritis seems to be helping more than regular Tylenol because it is time-released and higher dose. I did buy some tart cherry juice (real juice, not sugar filled stuff) at Target to try - I figured it couldn't hurt. I knew turmeric didn't work because I tried it a couple months ago and noticed absolutely no difference whatsoever. The facet joints are one area that is affected that we know of but I will get the results of the lower back and pelvic x-rays soon (hopefully, tomorrow) to know if there is any confirmed damage there by the radiologist report. :)
 
Izzie said:
I got the all clear from a nurse to remove all dressings from my incision today! Yes! I've had tape on me for 5 weeks straight I'm over it. It looks super ugly, though. The staple marks are totally going to scar and are here to stay. I was hoping that this wouldn't really bother me but it actually does really bother me. It looks brutal and ugly and red and just... yeah. I don't like it. If it fades to white with time I'll tolerate it probably but right now I really hate it.
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I could not wait for my stitches to dissolve, either, so I totally understand! It's like you want to yell, "FREEDOM!" LOL! It will take time for the scars to heal. Once they are completely closed up, you might want to ask your doctor if you can use something like Mederma or Bio-Oil (not sure if they have it in Sweden) which helps scars heal. Applying lotion can sometimes help. I have some stretch marks on my belly due to my PCOS (it's a common symptom of the disorder) and they started out ugly and red/purple but now the old ones are a very light white color. It'll probably take some getting used to, but give yourself time to heal. :)
 
MissLeopard83 said:
Tylenol Arthritis seems to be helping more than regular Tylenol because it is time-released and higher dose. I did buy some tart cherry juice (real juice, not sugar filled stuff) at Target to try - I figured it couldn't hurt. I knew turmeric didn't work because I tried it a couple months ago and noticed absolutely no difference whatsoever. The facet joints are one area that is affected that we know of but I will get the results of the lower back and pelvic x-rays soon (hopefully, tomorrow) to know if there is any confirmed damage there by the radiologist report. :)
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Injections might really help for facet joint arthritis. If you do have any arthritis in your lumbar spine, then of course it will depend on whether your rheumatologist thinks it is inflammatory or degenerative. If it's osteoarthritis then a series of injections might help.

If it's inflammatory, then obviously you need to treat the disease.

Fwiw, based on the cervical spine x-ray results you posted, it doesn't sound like there are any signs of AS. You would see different damage if there were. But of course, the pelvic x-rays will tell you more and really an MRI would be best to rule out SpA altogether.
 
Maya142 said:
Injections might really help for facet joint arthritis. If you do have any arthritis in your lumbar spine, then of course it will depend on whether your rheumatologist thinks it is inflammatory or degenerative. If it's osteoarthritis then a series of injections might help.

If it's inflammatory, then obviously you need to treat the disease.

Fwiw, based on the cervical spine x-ray results you posted, it doesn't sound like there are any signs of AS. You would see different damage if there were. But of course, the pelvic x-rays will tell you more and really an MRI would be best to rule out SpA altogether.
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Yeah, it sounds like plain osteoarthritis to me, too. Of course, since RA runs in my family, I will get the lab work just to be sure, but I'm hoping for non-autoimmune arthritis. I know OA is degenerative, but my research has shown that it progresses slower so I hope that with diet, exercise, physical therapy, and medical treatments, I'll be able to live mostly pain-free. It sucks being 34 and having to deal with chronic pain, but some days are better than others (like today, for instance) and so I live for those days.

I'm working on changing my diet so I'm eating less inflammatory foods (I'm looking into the Mediterranean diet since it has so many helpful benefits; my GI also recommended the South Beach protocol but the Mediterranean diet sounds more sustainable instead of yo-yo-ing up and down). My first endeavor is getting off of soda. So far, it's going well! :)
 
RA tends not to affect the lower back and SI joints...it's very rarely found there. So I wouldn't really worry about that. SpA is what affects the lumbar spine and SI joints and it sounds like you have no family history of SpA. RA and SpA are entirely different diseases, although both are types of inflammatory arthritis.

Osteoarthritis is painful but easier to deal with my husband has found. Like you said, things like physical therapy and diet and weight loss can make a really big difference. A pain management specialist could also help if all that does not - they are usually the ones who do injections into the facet joints.

There is some new research that suggests that certain antidepressants like Cymbalta or anticonvulsants like Lyrica may help with osteoarthritis pain. They are both approved for fibromyalgia pain too.

My daughter takes Gabapentin to help with chronic pain.
 
Ugh, another day of burning and lump in throat feeling.

I've noticed that my family and loved ones no longer really have any empathy towards me and seem to be thinking I'm exaggerating or that it's "all in my head". To them, I've had surgery and should be all better. If I mention having a bad day or symptoms at all, I get eye rolls in response. It makes me a bit sad.

Trying to be patient as I am still healing. Had coffee today which according to my surgeon I'm allowed to have but it does NOT work - I get heartburn immediately - so that's a no-go. I think caffeine in general is a huge trigger for me that I should avoid permanently.

What are your New Years plans?

I'm planning on just staying home by myself in my apartment and just taking it easy. I'm in no mood for more holiday parties. I'm going to really enjoy the time to myself.
 
Izzie, I think it’s really hard for those who have never experienced severe chronic pain to understand its effects. I’ve had daily migraines for almost 20 years, beginning with the birth of my third child and when my older two were 20 months and 3 1/2 years old. My husband never understood what that was like (one of the reasons we are separated even though we remain good friends). He just couldn’t see why I went to bed early or slept when the kids were napping. I think he thought they felt like a regular headache: uncomfortable and annoying. But chronic pain is way more than annoying.

Most people have heartburn that gets better with food or simple medication. They have no idea how it could hurt you—and depress you—so much. I write this not to excuse them, just to tell you I understand and that your family may never understand unless they experience what you are going through.

As for my New Year’s plans, I’ll probably cook something special and have a quiet night.
 
Jabee said:
Izzie, I think it’s really hard for those who have never experienced severe chronic pain to understand its effects. I’ve had daily migraines for almost 20 years, beginning with the birth of my third child and when my older two were 20 months and 3 1/2 years old. My husband never understood what that was like (one of the reasons we are separated even though we remain good friends). He just couldn’t see why I went to bed early or slept when the kids were napping. I think he thought they felt like a regular headache: uncomfortable and annoying. But chronic pain is way more than annoying.

Most people have heartburn that gets better with food or simple medication. They have no idea how it could hurt you—and depress you—so much. I write this not to excuse them, just to tell you I understand and that your family may never understand unless they experience what you are going through.

As for my New Year’s plans, I’ll probably cook something special and have a quiet night.
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This is true. It's a fine line because you don't want your pain to consume your entire life and outlook, but sometimes when it's bad that's exactly what it does. I'm still trying to find balance with the mental aspect of chronic disease. Thinking about it too much and comparing your "new normal" with what it was like to be pain-free and healthy is really disheartening and doesn't make anything better I've found. But it's hard not to go down that road. Takes active work. Still something I need to work on.

Sometimes, I'll not even have pain that's that bad, just a twinge, but I'll get stuck in the depressive loop of "normal people don't have to feel this discomfort all the time. Even if it's decent for me healthy people still feel much better than I do now. What if I'm never going to feel good like a normal healthy person ever again." And then you've gone and made yourself clinically depressed :eek:
 
Izzie said:
This is true. It's a fine line because you don't want your pain to consume your entire life and outlook, but sometimes when it's bad that's exactly what it does. I'm still trying to find balance with the mental aspect of chronic disease. Thinking about it too much and comparing your "new normal" with what it was like to be pain-free and healthy is really disheartening and doesn't make anything better I've found. But it's hard not to go down that road. Takes active work. Still something I need to work on.

Sometimes, I'll not even have pain that's that bad, just a twinge, but I'll get stuck in the depressive loop of "normal people don't have to feel this discomfort all the time. Even if it's decent for me healthy people still feel much better than I do now. What if I'm never going to feel good like a normal healthy person ever again." And then you've gone and made yourself clinically depressed :eek:
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Never give up on finding health.
 
Maya142 said:
RA tends not to affect the lower back and SI joints...it's very rarely found there. So I wouldn't really worry about that. SpA is what affects the lumbar spine and SI joints and it sounds like you have no family history of SpA. RA and SpA are entirely different diseases, although both are types of inflammatory arthritis.

Osteoarthritis is painful but easier to deal with my husband has found. Like you said, things like physical therapy and diet and weight loss can make a really big difference. A pain management specialist could also help if all that does not - they are usually the ones who do injections into the facet joints.

There is some new research that suggests that certain antidepressants like Cymbalta or anticonvulsants like Lyrica may help with osteoarthritis pain. They are both approved for fibromyalgia pain too.

My daughter takes Gabapentin to help with chronic pain.
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I got the results of my lower back and pelvis x-rays. This is the radiologist's report on the pelvis:

FINDINGS: Intact bony pelvis. Bone mineralization appears normal. No evidence of fracture or dislocation involving the right or left hip. No significant degenerative changes.

IMPRESSION: No evidence of fracture or dislocation.

For the lower back:

FINDINGS: Diminished lumbar spine lordotic curvature. Vertebral body heights maintained. No evidence of fracture or subluxation. Pedicles intact. No bone destruction. Bifid L5 spinous process. Mild degenerative disc disease changes at L3-4, L4-5. Facet joint degenerative changes at L4-5, L5-S1 No spondylolysis. No spondylolisthesis.

IMPRESSION:

Mild degenerative disc changes at L3-4, L4-5.
Facet joint degenerative changes at L4-5, L5-S1.

Not sure what all of it means, but I guess I have facet joint issues. I got a lot of reading to do. This explains a LOT.
 
Finding this post was such a godsend today! I have been really feeling like I am loosing my mind! All of my blood work seems to come back ok or my doctor sends me to be referred and they tell me it's going to be months to get in to see a doctor. I have always had issues with using the bathroom namely up until recently I couldn't go on my own and had to take miralax ect to go. Now I'm having the opposite problem and every time I eat I either vomit or get diarrhea. I am 32 and seemingly healthy if you just look at me, however, if you know me you know there are days when I feel like my body is surrounded by quick sand and everything feels like a struggle! I have finally got a dr who is trying to help but lately my results seem ok. I did just get back a positive ana panel and found out that my pain in my hand is from a negative olnar variance. So I am getting somewhere but it's just hard sometimes to keep positive. Just before the holidays I spent a day at the er only to go home with some pain and nausea meds and told my doctor should set up a scope and scan. I never realized that you had to request so much be done at an er or dr office. But from the advice of others now I know some of what I need to be asking for and hopefully will find something out soon. I have always had trouble loosing weight [I'm normal for my height according to my bmi] but lately my weight is on a nice decline averaging about 10lbs a month since Sept of this year.
 
FINDINGS: Intact bony pelvis. Bone mineralization appears normal. No evidence of fracture or dislocation involving the right or left hip. No significant degenerative changes.

IMPRESSION: No evidence of fracture or dislocation.

For the lower back:

FINDINGS: Diminished lumbar spine lordotic curvature. Vertebral body heights maintained. No evidence of fracture or subluxation. Pedicles intact. No bone destruction. Bifid L5 spinous process. Mild degenerative disc disease changes at L3-4, L4-5. Facet joint degenerative changes at L4-5, L5-S1 No spondylolysis. No spondylolisthesis.

IMPRESSION:

Mild degenerative disc changes at L3-4, L4-5.
Facet joint degenerative changes at L4-5, L5-S1.

Not sure what all of it means, but I guess I have facet joint issues. I got a lot of reading to do. This explains a LOT.
Click to expand...

It means you have mild facet joint arthritis in your lumbar spine. Not too bad. No signs of AS. You can't really rule out SpA without an MRI, but if your rheumatologist feels like your symptoms and clinical exam do not point to SpA, then I would believe her.

It looks like mild osteoarthritis in your lumbar spine. Very common. Lower back pain is one of the most common complaints doctors hear. There is a lot of debate about the best way to treat it.

Some doctors use injections - steroid injections directly into the facet joints. There is also radiofrequency ablation, which burns the nerves in that area. That is only done after steroid shots have been successful (if they are successful).

The less invasive treatments that I would try first are PT and NSAIDs. Ice and heat for your back.
 
Maya142 said:
It means you have mild facet joint arthritis in your lumbar spine. Not too bad. No signs of AS. You can't really rule out SpA without an MRI, but if your rheumatologist feels like your symptoms and clinical exam do not point to SpA, then I would believe her.

It looks like mild osteoarthritis in your lumbar spine. Very common. Lower back pain is one of the most common complaints doctors hear. There is a lot of debate about the best way to treat it.

Some doctors use injections - steroid injections directly into the facet joints. There is also radiofrequency ablation, which burns the nerves in that area. That is only done after steroid shots have been successful (if they are successful).

The less invasive treatments that I would try first are PT and NSAIDs. Ice and heat for your back.
Click to expand...

Of course, I'm going to talk to my rheumy to see what she thinks, but I have been looking at doctors who specialize in osteoarthritis of the spine. I found a really great doctor who is covered by my HMO and he receives excellent ratings. The ironic thing is I was just looking at my rheumy's profile again thru the medical group and she is the only rheumy in the group that specializes in osteoarthritis, so I'm hoping she will give some good advice.

Also, I'm wondering if I have the same OA thing going on in my thoracic spine as that is the only portion that hasn't been x-rayed. I don't want so much radiation, though, so I don't know if I should get that done. I know MRIs can pick up changes without creating so much radiation, so that's a possibility. Anyway, I still need to get to the lab but it's difficult to get there. They don't have convenient hours to work around my job schedule. :(
 
There is no radiation at with MRIs. But they are much more expensive and some insurance companies will require x-rays first.

I don't know how much more an MRI would tell you - it sounds like there is a reason for your pain that the x-rays have already identified. I would only do an MRI if it would change the treatment plan and I think at this stage, it is very unlikely to.
 
Maya142 said:
There is no radiation at with MRIs. But they are much more expensive and some insurance companies will require x-rays first.

I don't know how much more an MRI would tell you - it sounds like there is a reason for your pain that the x-rays have already identified. I would only do an MRI if it would change the treatment plan and I think at this stage, it is very unlikely to.
Click to expand...

I'm not very familiar with protocol so I'll defer to my doctor(s). But, I do appreciate input as some of you have more experience dealing with arthritis and similar conditions than I do. I'm not happy I have OA, but it could be worse, so I'm focusing on that. :)
 

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