Undiagnosed Club Support Group

[Maya142]

I'm doing okay thanks, I finally had a GJ tube placed on February 27th, it's been a bit rocky with an infection in it so I've had weeks of iodine dressings and antibiotics and I'm still getting puss draining from it which is frustrating. But overall it's so much better than the NJ was!

sarahfh, we had two infections after her GJ tube was put in. Same situation as you. It took us a while to figure it out. Now when she thinks it's getting infected, we use an antibiotic cream and usually it goes away. It's also sometimes difficult to tell pus from discharge. You can have discharge that looks a lot like pus, but it isn't. It took us a while to figure out what was normal for her and what was suspicious. It helps too if you have other symptoms - redness around the stoma for example.

In terms of pain, my daughter took several months to heal fully but I think that's because she was on biologics. She required pain meds too. I am surprised you're having trouble weaning the Tramadol though - 50 mg twice a day isn't a high dose at all. But everyone is different.

Pain meds are weird though - my daughter has been on high doses of pain meds due to arthritis damage in her joints (she will be having her 3rd surgery in less than a year this summer :ybatty and active AS. But her Gastroparesis hasn't been bad at all this year! In fact, she is finally eating and not using her tube! Totally bizarre.

 

[Izzie]

Izzie this might seem a bit left field but have you considered a gastric emptying study to see if your stomach is emptying properly? Just asking as reflux is one of my worst gastroparesis symptoms especially without lansoprazole twice per day. It's literally my body going "well it won't go down so let's send it up". Just a thought

This is actually top of the list. If my scope shows the fundoplication is intact the gastric emptying test is next. You're all so smart here you figure out stuff way before my doctors do :hug:

Would explain why I feel full for literally a full day on one small meal in the morning. I still have an appetite to eat more later in the day, but feel very full all the time.

 

[MissLeopard83]

Hello again! I finally bit the bullet today and called my rheumatologist's office and told them I wanted to transfer my care to the other doctor who receives better reviews. I would like a second opinion about the fibromyalgia and osteoarthritis and, hopefully, get some more treatment options. I hope this doctor will be more open-minded, for one thing, and not so quick to shut my opinions down. I have stopped using the muscle relaxer since it's not helping and I hope this other doctor will not want to prescribe a new one. Please keep me in your thoughts and prayers! My appointment is Tuesday at 8:45am.

 

[Maya142]

I hope the second opinion is helpful. Are you still taking Plaquenil MissLeopard83? If you are, has it helped at all? How long have you been on it?

 

[MissLeopard83]

I hope the second opinion is helpful. Are you still taking Plaquenil MissLeopard83? If you are, has it helped at all? How long have you been on it?

I am still taking it and have been since mid-January. It's helping somewhat but it takes a while to fully get into your system - anywhere from 3 months to a year from what I've read.

 

[cmack]

I will pray, MissLeopard. I really hope things go well with the new doctor. I know what dismissive doctors are like... I just better not even go there.

 

[Maya142]

We were told 3 months...Good luck with the new rheumatologist. What have you tried for Fibromyalgia? Any meds besides muscle relaxants? Have you tried physical therapy?

 

[Anna's Bandit]

Hello again! I finally bit the bullet today and called my rheumatologist's office and told them I wanted to transfer my care to the other doctor who receives better reviews. I would like a second opinion about the fibromyalgia and osteoarthritis and, hopefully, get some more treatment options. I hope this doctor will be more open-minded, for one thing, and not so quick to shut my opinions down. I have stopped using the muscle relaxer since it's not helping and I hope this other doctor will not want to prescribe a new one. Please keep me in your thoughts and prayers! My appointment is Tuesday at 8:45am.

Good job on being assertive to get your needs met.
I had a situation where I had doubts about something and I got a second opinion. :hang:

 

[MissLeopard83]

We were told 3 months...Good luck with the new rheumatologist. What have you tried for Fibromyalgia? Any meds besides muscle relaxants? Have you tried physical therapy?

Nothing really because I haven't been prescribed anything other than muscle relaxants. I take ibuprofen when my pain gets pretty bad or, in the past, I've used some prescribed painkillers to stop the pain when it gets unbearable, but that's about it. I was just started on Effexor less than a week ago for chronic depression but I know it can help with pain, too (switching off of Celexa since it's causing weight gain). I've been getting out and being much more active, too, but I experience repercussions the day after. It is getting easier, though, since I don't want to be in the house so I push myself to do it.

I've also tried chiropractic care, a TENS unit, alternating hot/cold therapy (a heating pad helps temporarily but not much; it helps my osteoarthritis in my back, though). I just bought a gym membership so I can use their indoor swimming pool so I hope that helps.

 

[MissLeopard83]

Good job on being assertive to get your needs met.
I had a situation where I had doubts about something and I got a second opinion. :hang:

Thank you. I know some doctors are of the mind that they should be in control of the patient's care, but I'd rather be an active participant instead of passive since I know my body and how I'm feeling. It's very frustrating to have a doctor shut me down and not offer any alternatives or just repeat the same thing over and over when you've tried her suggestions but are still experiencing symptoms.

 

[MissLeopard83]

We were told 3 months...Good luck with the new rheumatologist. What have you tried for Fibromyalgia? Any meds besides muscle relaxants? Have you tried physical therapy?

I forgot to mention that, ever since starting the Plaquenil, my IBS symptoms have calmed down dramatically. I have boxes of Zofran saved up from when I thought I was going to lose my health insurance because it was the only thing that worked for my intense nausea (it's the only thing that works for my grandmother, too, strangely enough). I have not used it much at all and I don't know whether it's related or just coincidence but it's wonderful, nonetheless.

 

[ronroush7]

I forgot to mention that, ever since starting the Plaquenil, my IBS symptoms have calmed down dramatically. I have boxes of Zofran saved up from when I thought I was going to lose my health insurance because it was the only thing that worked for my intense nausea (it's the only thing that works for my grandmother, too, strangely enough). I have not used it much at all and I don't know whether it's related or just coincidence but it's wonderful, nonetheless.

MissLeopard, I am glad things have really calmed down for you.

 

[Maya142]

MissLeopard83, Effexor should help with Fibromyalgia pain, but of course it will take a while. Swimming is great for the joints, so I would definitely do that.
Remind me which of your joints hurt the most? Are you seeing swelling or redness? Do they feel warm?

 

[MissLeopard83]

MissLeopard83, Effexor should help with Fibromyalgia pain, but of course it will take a while. Swimming is great for the joints, so I would definitely do that.
Remind me which of your joints hurt the most? Are you seeing swelling or redness? Do they feel warm?

It varies from day to day but the worst pain is in my neck, back, hips, shoulders, and hands. I also get pretty bad heel pain where my feet burn - even if I rest them on my bed with my knees bent, they will start burning and hurting after a while. My hands get really sore sometimes. There was one time recently where my hands were hurting so much that they felt tight (I remember seeing that my knuckles were red and warm). My neck and back are the absolute worst, though. If I've been up and walking around, like shopping, and I come home to lay down, I get up and my back will hurt so much that I'm hunched over. It takes a while for the stiffness to go away. Advil only helps so much and I worry about taking too much of it.

I plan to tell all of this to the new rheumatologist and I hope she can make sense of it. I also plan to bring my x-rays so she can look at them. My guess is that she'll probably want to do an x-ray of my upper back since only my neck and lower back were done.

 

[Maya142]

Have you had MRIs at all? Honestly, it is hard to say what is fibromyalgia and if there is something else going on. I think if your last rheumatologist examined you and didn't find any inflamed joints, then it is likely fibromyalgia.

There are other meds for fibromyalgia you can try - Lyrica, Gabapentin, Savella. PT can help a lot. Swimming will help a lot. The best treatment for it is really exercise.

An x-ray would not tell you if you have inflammatory arthritis in your back necessarily. In SpA (spondyloarthritis), it often can take up to 8-10 years before you see x-ray damage. It can be faster - my daughter developed x-ray damage in 3-4 years. But generally it is slow and that's why an MRI would necessary to rule it out.

But that is only done if there is reason to suspect SpA - if you are HLA B27+, elevated ESR or CRP (though they aren't always elevated) and mostly importantly, that clinically, you show signs of inflammatory arthritis.

SpA is certainly something you can bring up and ask about, regarding your back, hip and neck pain. It also commonly affects the heels (though burning pain sounds more like fibro) and sometimes affects the hands and shoulders.

It is usually seronegative - so a positive RF, anti-CCP or ANA could suggest that something else is going on instead.

It's just always hard to tell when there is fibromyalgia (since symptoms can overlap) but an MRI of your lower back and hips (and maybe neck) would tell you if there is anything inflammatory going on.

 

[MissLeopard83]

Have you had MRIs at all? Honestly, it is hard to say what is fibromyalgia and if there is something else going on. I think if your last rheumatologist examined you and didn't find any inflamed joints, then it is likely fibromyalgia.

There are other meds for fibromyalgia you can try - Lyrica, Gabapentin, Savella. PT can help a lot. Swimming will help a lot. The best treatment for it is really exercise.

An x-ray would not tell you if you have inflammatory arthritis in your back necessarily. In SpA (spondyloarthritis), it often can take up to 8-10 years before you see x-ray damage. It can be faster - my daughter developed x-ray damage in 3-4 years. But generally it is slow and that's why an MRI would necessary to rule it out.

But that is only done if there is reason to suspect SpA - if you are HLA B27+, elevated ESR or CRP (though they aren't always elevated) and mostly importantly, that clinically, you show signs of inflammatory arthritis.

SpA is certainly something you can bring up and ask about, regarding your back, hip and neck pain. It also commonly affects the heels (though burning pain sounds more like fibro) and sometimes affects the hands and shoulders.

It is usually seronegative - so a positive RF, anti-CCP or ANA could suggest that something else is going on instead.

It's just always hard to tell when there is fibromyalgia (since symptoms can overlap) but an MRI of your lower back and hips (and maybe neck) would tell you if there is anything inflammatory going on.

I've not had any MRIs done except for brain scans to check for an acoustic neuroma or any neurological changes to be ruled out before being diagnosed with migraines. I have had a positive ANA this year and a pretty high CRP count. Since both my paternal grandmother and aunt have Rheumatoid Arthritis, I'm starting to think it is RA instead of SLE. I know Plaquenil can help RA, too.

 

[Maya142]

RA tends to affect the hands and feet...it does not affect the lower back usually, though it can affect the neck and shoulders. It can affects the wrists, the knees, the elbows...most joints except the SI joints/spine usually (except the cervical spine, which is often involved).

Have they checked RF and Anti-CCP? It's possible to have seronegative RA but I think about 80% of people with RA have the Rheumatoid factor (RF) and something like 60-70% have anti-CCP antibodies.

It is usually fairly easily diagnosable with blood work and physical exams (you would have swollen, warm and sometimes red joints). It is much more easily diagnosed than SpA - swelling/inflammation is much more obvious usually and it tends to affect joints that doctors can easily examine and detect inflammation in.

Occasionally imaging like x-rays of the hands are necessary. They also may do ultrasounds to see if there is active inflammation in your hands too.

Has your CRP been checked since the first time? One high CRP doesn't really mean much but if you have consistently a high CRP that suggests inflammation. I am sure the new rheumatologist will check. The good news is that RA is well-known and much more easily diagnosed than SLE or SpA/AS.

Keep in mind that it is very possible to have a concomitant fibromyalgia dx.

I would also ask about Celebrex for joint pain - it is much better for you than taking Advil.

Good luck!!!

 

[MissLeopard83]

RA tends to affect the hands and feet...it does not affect the lower back usually, though it can affect the neck and shoulders. It can affects the wrists, the knees, the elbows...most joints except the SI joints/spine usually (except the cervical spine, which is often involved).

Have they checked RF and Anti-CCP? It's possible to have seronegative RA but I think about 80% of people with RA have the Rheumatoid factor (RF) and something like 60-70% have anti-CCP antibodies.

It is usually fairly easily diagnosable with blood work and physical exams (you would have swollen, warm and sometimes red joints). It is much more easily diagnosed than SpA - swelling/inflammation is much more obvious usually and it tends to affect joints that doctors can easily examine and detect inflammation in.

Occasionally imaging like x-rays of the hands are necessary. They also may do ultrasounds to see if there is active inflammation in your hands too.

Has your CRP been checked since the first time? One high CRP doesn't really mean much but if you have consistently a high CRP that suggests inflammation. I am sure the new rheumatologist will check. The good news is that RA is well-known and much more easily diagnosed than SLE or SpA/AS.

Keep in mind that it is very possible to have a concomitant fibromyalgia dx.

I would also ask about Celebrex for joint pain - it is much better for you than taking Advil.

Good luck!!!

I know that I have osteoarthritis in my neck and lower back with fibromyalgia pain on top of it but the other joints like my hips and pelvis showed no discernible damage on x-ray. I only had neck, lower back, and pelvis done. The worst damage was in my neck as it showed prominent facet joint damage between C4 and C5 according to the radiologist.

It's been a while since my CRP was checked so that might be something to test. The ESR was normal and so was the RF and anti-CCP. I did read somewhere about sero-negative RA, so that is a possibility. When I told my grandmother about my symptoms, she said they sounded similar to her symptoms and had anyone talked to me about RA? Though I don't have a clear-cut diagnosis yet, I'm hoping that this new doctor will have some insight.

I am not sure if I take Celebrex since I am allergic to sulfa antibiotics but I was planning to ask about other NSAIDs like Diclofenac/Voltaren and can be very helpful for OA and RA. I would prefer to try something that doesn't cause GI bleeding risks or CV risks like Tramadol (as-needed) but I don't know how she feels about prescribing it. Since the other rheumy shut me down like I was drug-seeking, I am apprehensive about bringing it up. I don't even know if Tramadol is an option since I'm on two antidepressants - Wellbutrin and Effexor - for depression/anxiety AND an antipsychotic for mood swings.

One thing that has helped tremendously for my OA pain is lidocaine - either lotion or patches. I'm always grateful for any kind of relief.

 

[cmack]

Hi MissLeopard,

Thank goodness for lidocaine! I tried a prescription compounding lotion with ketamine in it on my sore back and shoulders, and it was great too! Because it is applied topically, there are no effects on cognitive function. I can't remember the exact ratio, but if you want more info I can ask my druggist for you.

 

[MissLeopard83]

Hi MissLeopard,

Thank goodness for lidocaine! I tried a prescription compounding lotion with ketamine in it on my sore back and shoulders, and it was great too! Because it is applied topically, there are no effects on cognitive function. I can't remember the exact ratio, but if you want more info I can ask my druggist for you.

I am so glad it works for me, too. Anytime I can use something that is topical that works, it's great. I actually found Aspercreme with Lidocaine when I had my first ovarian cyst surgery in October 2016 and the surgery left me with a huge blood bruise on my pelvic area that HURT so bad! My mom got it for me at the drugstore and it was amazing how much it helped!

 

[Maya142]

I am not sure if I take Celebrex since I am allergic to sulfa antibiotics but I was planning to ask about other NSAIDs like Diclofenac/Voltaren and can be very helpful for OA and RA. I would prefer to try something that doesn't cause GI bleeding risks or CV risks like Tramadol (as-needed) but I don't know how she feels about prescribing it. Since the other rheumy shut me down like I was drug-seeking, I am apprehensive about bringing it up. I don't even know if Tramadol is an option since I'm on two antidepressants - Wellbutrin and Effexor - for depression/anxiety AND an antipsychotic for mood swings.

My daughters both have sensitive stomachs and it took a LOT of trial and error to figure out which NSAIDs they could tolerate. Besides Celebrex (which you can't take), they had success with Relafen and Mobic. Both are much easier on the stomach than Advil, Naproxen (Aleve), Dolobid, Voltaren (caused horrible nausea), Arthrotec, Tolectin, Indocin etc. We tried a LOT of NSAIDs before we finally figured out what worked best for them.

They also both needed a PPI - they cannot tolerate NSAIDs at all without one. NSAIDs are actually considered better than pain medications if you have inflammatory arthritis (like RA) because they actually treat the inflammation vs. just masking the pain.

If you have osteoarthritis in your neck, there are some options for that. They can do various kinds of steroid injections and if those work, a radiofreqeuncy ablation may give you longer lasting pain relief.

As for pain medication, I would think carefully about bringing it up because of the hysteria around the opioid epidemic. Most rheumatologists will not prescribe pain medications anyway. They treat the disease - in RA, that would entail treating the inflammation. In Fibromyalgia, treatment would get over-active nerves to calm down. They tend not to prescribe opioids and if you need further pain management, then generally they refer you to a pain management specialist.

For Fibromyalgia, trigger point injections done by a pain management doctor might help - they helped my daughter a LOT.

In terms of actual pain meds, with two anti-depressants and an anti-psychotic, I don't know if they could even prescribe something like Tramadol. It definitely interacts with SNRIs - could cause serotonin syndrome. I am not sure about Wellbutrin or the antipsychotic.

Like you said earlier, Effexor is supposed to help with pain, so hopefully that will kick in soon.

For RA, Plaquenil is an option. Methotrexate is what is used most commonly. But I would wait and see, because while your symptoms may sound like RA, it's hard to tell without a doctor examining you. With rheumatic diseases it's hard to tell what is causing what because of overlapping symptoms.

Hang in there and good luck!

 

[MissLeopard83]

My daughters both have sensitive stomachs and it took a LOT of trial and error to figure out which NSAIDs they could tolerate. Besides Celebrex (which you can't take), they had success with Relafen and Mobic. Both are much easier on the stomach than Advil, Naproxen (Aleve), Dolobid, Voltaren (caused horrible nausea), Arthrotec, Tolectin, Indocin etc. We tried a LOT of NSAIDs before we finally figured out what worked best for them.

They also both needed a PPI - they cannot tolerate NSAIDs at all without one. NSAIDs are actually considered better than pain medications if you have inflammatory arthritis (like RA) because they actually treat the inflammation vs. just masking the pain.

If you have osteoarthritis in your neck, there are some options for that. They can do various kinds of steroid injections and if those work, a radiofreqeuncy ablation may give you longer lasting pain relief.

As for pain medication, I would think carefully about bringing it up because of the hysteria around the opioid epidemic. Most rheumatologists will not prescribe pain medications anyway. They treat the disease - in RA, that would entail treating the inflammation. In Fibromyalgia, treatment would get over-active nerves to calm down. They tend not to prescribe opioids and if you need further pain management, then generally they refer you to a pain management specialist.

For Fibromyalgia, trigger point injections done by a pain management doctor might help - they helped my daughter a LOT.

In terms of actual pain meds, with two anti-depressants and an anti-psychotic, I don't know if they could even prescribe something like Tramadol. It definitely interacts with SNRIs - could cause serotonin syndrome. I am not sure about Wellbutrin or the antipsychotic.

Like you said earlier, Effexor is supposed to help with pain, so hopefully that will kick in soon.

For RA, Plaquenil is an option. Methotrexate is what is used most commonly. But I would wait and see, because while your symptoms may sound like RA, it's hard to tell without a doctor examining you. With rheumatic diseases it's hard to tell what is causing what because of overlapping symptoms.

Hang in there and good luck!

Thank you for your guidance. I really want to stay away from painkillers if at all possible. I hope that the new doctor will explore options with me about the arthritis unlike the other doctor who didn't even try to treat it. I will do everything on my end that I can like exercise, stretching, OTC meds, etc.

 

[Maya142]

Yes, I would just make sure to tell the new doc you are very sensitive to medications and muscle relaxants did not work. And be sure to tell her all the things you are doing - the stretching etc.

It may also take a while to diagnose you - it can take months in the rheumatology world. Some things are hard to diagnose - like connective tissue diseases or SLE.

RA should be faster because your joints will either be inflamed or not...it's fairly easy to tell with the hands. My daughter's rheumatologist can always tell if there is fluid in her knuckles just by examining them. She will point out two (for example) that are full of fluid and the others that are not. They all look the same to me!

Another thing you should not rule out is PsA. It can also affect all the joints you mentioned. It is seronegative and sometimes the joint disease shows up before the psoriasis.

 

[MissLeopard83]

Yes, I would just make sure to tell the new doc you are very sensitive to medications and muscle relaxants did not work. And be sure to tell her all the things you are doing - the stretching etc.

It may also take a while to diagnose you - it can take months in the rheumatology world. Some things are hard to diagnose - like connective tissue diseases or SLE.

RA should be faster because your joints will either be inflamed or not...it's fairly easy to tell with the hands. My daughter's rheumatologist can always tell if there is fluid in her knuckles just by examining them. She will point out two (for example) that are full of fluid and the others that are not. They all look the same to me!

Another thing you should not rule out is PsA. It can also affect all the joints you mentioned. It is seronegative and sometimes the joint disease shows up before the psoriasis.

I had not considered Psoriatic Arthritis - no one has mentioned it. Interesting symptoms, though. Tuesday can't come soon enough. Yes, it may take a while, but I'd be much happier knowing that I have more options available that were not addressed before.

 

[Maya142]

The heels are commonly affected in PsA, as the are the hands. It can also affect the lower back (SI joints/lumbar spine) like SpA.

Good luck and let us know what happens.

 

[sarahfh]

Maya;

Thankfully the most recent swabs have come back clear so looks like the antibiotics did their job. Which means the current discharge must be my normal? It's like sticky and slightly green and dries crusty. It reminds me of snot lol. But I do have a terrible cold so maybe it will change soon. But the tract itself now looks really good the raw red weepy bit has healed up and it's all neat around the edges which is good.

Yeah I'm surprised I've been having trouble coming off the Tramadol at such a small dose but I'm now making it up in 10ml of water and weaning down 1ml every couple of days which seems to be going okay! I'm on 7ml now which is around 35mg.

Wow that's incredible she is doing so well with her gastroparesis! That must be amazing for her! I hope all goes well with her surgery. I have a feeling either later this year or early next year I will have to have another endometriosis surgery as I'm getting a lot of symptoms again so I can understand that stress.

 

[sarahfh]

This is actually top of the list. If my scope shows the fundoplication is intact the gastric emptying test is next. You're all so smart here you figure out stuff way before my doctors do :hug:

Would explain why I feel full for literally a full day on one small meal in the morning. I still have an appetite to eat more later in the day, but feel very full all the time.

I'm glad you've already got a plan in pace to potentially check it out [emoji846]

Yes I started off like that just noticing I was feeling full quicker than usual and not having an appetite on a morning if I had a big meal the evening before or snacked late at night.

Also my experience of gastroparesis/delayed gastric emptying isn't everybody else's, a lot of people will just get a level of delay and stay there! So don't let that freak you out with the tube feeding and not eating stuff!

 

[MissLeopard83]

The heels are commonly affected in PsA, as the are the hands. It can also affect the lower back (SI joints/lumbar spine) like SpA.

Good luck and let us know what happens.

That's good to know.

 

[MissLeopard83]

Well, I had my appointment today and I think it went pretty good. The new rheumy is going to do more extensive blood work because my body is having mixed symptoms - some are fibromyalgia and some are osteoarthritis, but there is also swelling and redness now. My fingers, particularly, were painful upon physical exam. She did, however, confirm the diagnosis of fibromyalgia thru physical exam and said that the Effexor I'm on can help with that but there's nothing else she can do. As for the osteoarthritis, she didn't offer any potent NSAIDs and said, "Unfortunately, there is not much we can do for the pain. You will need to learn to accept it and make friends with it." Unfortunately, I disagree because there is other stuff out there, but she also said pain management may have other suggestions.

As for the bloodwork, she is testing for more specific antigens like HLA-B27 and inflammatory markers like CRP and ESR. She has also ordered x-rays of my hands and feet to see if inflammation shows up on them. Right now, according to her, I have 2 of 5 markers that she looks for in Rheumatoid Arthritis - family history and pain in extremities. If I show a third either thru bloodwork or x-rays or both, she said an option is prescribing methotrexate (she said I am not OK to take sulfasalazine since I am allergic to other sulfa drugs like Bactrim). If it is pretty bad, however, then we can talk about injectable drugs like Humira, Enbrel, Cimzia, etc. She really wants to have concrete evidence and explained the high risks that these drugs carry. She really wants to start with methotrexate since it's less risky and less expensive.

As for the fibromyalgia, I know there's not much to do about it so I'll do what I can but I really think that seeing a pain management specialist might be the best option. I see the new rheumy again in 3 weeks and, if the bloodwork does not show more evidence, then I will go specifically for osteoarthritis pain.

All in all, I'm glad I sought a second opinion but I'm kind of disappointed that no prescription NSAIDs were given as an option. She flat out said, without me saying anything, that she does not prescribe narcotics so I would definitely need to see pain management for that.

I did, however, find a big bottle of glucosamine, chondroitin, and vitamin D complex at Target on clearance (220 tablets for $18.54 and I take 2 daily) so I bought that and I hope that it helps. It's comparable to Osteo Bi-flex which I know is good for joint health, so I'm hoping it will help the pain and/or slow further destruction of my joints.

 

[Maya142]

Generally, MTX is prescribed first for RA. It works very well for the peripheral joints and doesn't come with too many risks. It is used even in toddlers with JIA. My girls had less side effects with injectable MTX, but some prefer the pills. We did the shot on a Friday/Saturday so if they had side effects, they could recover over the weekend.

I am very surprised she didn't offer an NSAID - did you ask for one? That would really help with the osteoarthritis pain and with any pain actually. If you do have RA, then it would help with that. It might help with the fibro pain too.

I'd just call her office or write her an email and ask if you could try a prescription NSAID. It's not like asking for a narcotic - it's not considered "bad" or "drug seeking." Just say OTC NSAIDs have been bothering your stomach and ask if there is another NSAID you could take that would be easier on your stomach. This is not an uncommon problem.

Pain management can do things like injections for your neck and PT can work on the muscles. It is likely that if you have neck pain, you're unconsciously tensing up your muscles which causes more pain. One of my daughters had that issue and she had trigger point injections in her trapezius muscles which REALLY helped. So I would pursue both things for your neck. I'd probably start with PT first since that is less invasive than doing any kind of injections.

As for your hands, I think once you have the x-rays done and blood work done, you should finally have some answers. It is true that you need concrete evidence of arthritis before you can go to a biologic - otherwise the risks outweigh the benefits (and insurance probably wouldn't approve it anyway without concrete evidence).

Good luck - I hope the x-rays give and blood work finally give you some answers.

 

[MissLeopard83]

Generally, MTX is prescribed first for RA. It works very well for the peripheral joints and doesn't come with too many risks. It is used even in toddlers with JIA. My girls had less side effects with injectable MTX, but some prefer the pills. We did the shot on a Friday/Saturday so if they had side effects, they could recover over the weekend.

I am very surprised she didn't offer an NSAID - did you ask for one? That would really help with the osteoarthritis pain and with any pain actually. If you do have RA, then it would help with that. It might help with the fibro pain too.

I'd just call her office or write her an email and ask if you could try a prescription NSAID. It's not like asking for a narcotic - it's not considered "bad" or "drug seeking." Just say OTC NSAIDs have been bothering your stomach and ask if there is another NSAID you could take that would be easier on your stomach. This is not an uncommon problem.

Pain management can do things like injections for your neck and PT can work on the muscles. It is likely that if you have neck pain, you're unconsciously tensing up your muscles which causes more pain. One of my daughters had that issue and she had trigger point injections in her trapezius muscles which REALLY helped. So I would pursue both things for your neck. I'd probably start with PT first since that is less invasive than doing any kind of injections.

As for your hands, I think once you have the x-rays done and blood work done, you should finally have some answers. It is true that you need concrete evidence of arthritis before you can go to a biologic - otherwise the risks outweigh the benefits (and insurance probably wouldn't approve it anyway without concrete evidence).

Good luck - I hope the x-rays give and blood work finally give you some answers.

It was very weird. When I noticed she was concluding the appointment without talking about prescription NSAIDs, I did bring up that I was curious if there was anything that I could take that was better for my osteoarthritis. I told her I was eating Advil like crazy and that's when she mentioned, again, that I should become more used to the pain and basically learn to live with it. She mentioned that she does not prescribe narcotics (I absolutely did NOT bring that up this visit) and there was not much else. It left me very confused and disappointed.

I'm beginning to wonder why the doctors in this practice aren't interested in prescribing stronger NSAIDs. I don't know if will do any good to bring in research from the internet and see what she says about Mobic or another NSAID. About the only thing I can do beyond asking her again is contact my primary doctor and see if she would prescribe anything but I don't know if she will since she referred me to rheumatology.

ETA: I just sent a message thru the portal since it's after hours and mentioned that I went online to read about osteoarthritis and saw that there were other NSAIDs mentioned that were better for OA and asked if I could try one to see if it helps me better than Advil. If she doesn't prescribe one, I'll contact my primary and see if she could help me.

 

[Maya142]

Mobic isn't really "stronger" - it's just different. It might be easier on your stomach. It is true that the anti-inflammatory doses rheumatologists give are different from the OTC ones (for example, when my girls were prescribed Naproxen, which is Aleve, their rheumatologist prescribed more than is recommended on the OTC bottle for their ages), but it's not like she's giving you some extra powerful drug.

It is bizarre...it sounds like she is a good rheumatologist. Everything else you have said sounds very normal for the rheumatology world (and believe me, between my two daughters and husband, we have seen about 20 rheumatologists, both adult and pediatric). But NSAIDs are usually first line. Maybe she assumed you wanted to stay on Advil?

If it was my kiddo, I would write an email saying Advil is bothering my stomach and you were wondering if you could try another NSAID. That's as simple as it should be...it's not like you're asking to try something like an anti-TNF which requires concrete proof of inflammatory arthritis...an NSAID is justified for OA, for Fibromyalgia and even just for joint pain. And it is DEFINITELY usually a first line drug in suspected RA/SpA/JIA etc.

The commonly prescribed NSAIDs for kids are Mobic, Naproxen, Celebrex, Voltaren. Relafen is probably prescribed less but worked very well for both my girls.

Honestly, your PCP could prescribe one, but it would be odd since that is now your rheumatologist's domain. I think the best way to deal with this is to just ask her. She must have just misunderstood and maybe she thought you were saying you could not tolerate NSAIDs and didn't want one and wanted something else (which may be why she brought up narcotics). That's all I can think of.

 

[Maya142]

I just saw what you added. In response to that, I want to say that you should probably get your x-rays done as soon as you can, as well as your blood work. Just because the doses of NSAIDs used for RA may differ from those used for OA (generally they would be higher). So it would be good for her to know if you have it.

 

[MissLeopard83]

I just saw what you added. In response to that, I want to say that you should probably get your x-rays done as soon as you can, as well as your blood work. Just because the doses of NSAIDs used for RA may differ from those used for OA (generally they would be higher). So it would be good for her to know if you have it.

I think you're right about her thinking that I wanted something other than an NSAID when I mentioned it. I told her that I was eating Advil and was wondering if there was something better to take and I think maybe it was too open ended and made her think narcotics straight away. Honestly, though, she's the doctor and if she knows that there is something other than narcotics that would be safer, why not present that as an option?

Honestly, I'm just very frustrated. I know it's my responsibility to do all I can as far as healthy diet, exercise, and getting enough sleep and to be my own advocate, but I wonder why these two doctors seem to think that is enough? Yes, I know it can help, but it's not going to take the pain away completely - both of them even said that. I think it would be beneficial to at least try something that would improve my quality of life beyond what I have now.

It doesn't help that I'm getting push-back from my own mother. She seems to think that I just want a pill to take everything away but I said it's unreasonable to think that it will. I am willing to do the work but what is wrong with a little help along the way?

 

[Maya142]

You have to remember that these doctors are very rushed. They are trying to deal with getting everything into the computer as well as fit in as many patients as possible, as well as dealing with insurance companies who make their lives hell when they are appealing for biologics etc.

My daughter is extremely complicated - she has AS, Crohn's, Gastroparesis and many other conditions. She is on 20 medications and sees about 16 specialists. One of the things we do is that we go in with a typed update of how she is doing in each area - in her case, that means how her GI stuff is, how her AS symptoms are (both inflammatory and damage), chronic pain symptoms, endocrinology symptoms and so on. We include medication changes and basically just cover what has happened in the last 3 months in a 2-3 bullet points under each category (GI, rheumatology, pain management, endocrinology, hip orthopedic surgeon, oral and maxillofacial surgeon, PT and so on).

We also provide her with a list of medications. They are in the system of course, but it's simpler for her to have a typed list to refer to since M has so many.

Lastly, we give her a typed list of questions and concerns we want addressed. We make them as specific as possible. For example, one of yours could be "Can I try a different NSAID to see if it is easier on my stomach?" One of hers a couple months ago was "Can I try a different DMARD to see if it helps my hands and feet?" or "Can I have SI joint injections since it has been 4 months since the last set?"

We make it as specific as possible and try not to ask more than 3-4 things. M's appointments always take more than an hour and we feel bad for taking up the doctor's time, but she is extra complex.

When things are bad, we see the doctor more frequently - like every 2 months. When things are good, we see her every 3-4 months.

I would try writing down your questions VERY clearly in advance so things are not left open to interpretation. And don't get stuck on expecting one answer - if you ask for another NSAID because Advil is bothering your stomach, and she suggests taking Zantac with it first, then try that. If that doesn't work, then move on. You won't always get the answer you expect but if your question is specific enough, you should get a good answer.

And ignore your mother. All the conditions you have cause pain. If you have RA, that can cause significant damage and impact your organs. You absolutely have to treat it.

There are some people who just don't get it. I would try to educate her on the diagnoses you have currently and if that does not work, just move on and every time she says something, just say "I am doing what the doctor ordered." It is very hard to argue with that.

 

[MissLeopard83]

You have to remember that these doctors are very rushed. They are trying to deal with getting everything into the computer as well as fit in as many patients as possible, as well as dealing with insurance companies who make their lives hell when they are appealing for biologics etc.

My daughter is extremely complicated - she has AS, Crohn's, Gastroparesis and many other conditions. She is on 20 medications and sees about 16 specialists. One of the things we do is that we go in with a typed update of how she is doing in each area - in her case, that means how her GI stuff is, how her AS symptoms are (both inflammatory and damage), chronic pain symptoms, endocrinology symptoms and so on. We include medication changes and basically just cover what has happened in the last 3 months in a 2-3 bullet points under each category (GI, rheumatology, pain management, endocrinology, hip orthopedic surgeon, oral and maxillofacial surgeon, PT and so on).

We also provide her with a list of medications. They are in the system of course, but it's simpler for her to have a typed list to refer to since M has so many.

Lastly, we give her a typed list of questions and concerns we want addressed. We make them as specific as possible. For example, one of yours could be "Can I try a different NSAID to see if it is easier on my stomach?" One of hers a couple months ago was "Can I try a different DMARD to see if it helps my hands and feet?" or "Can I have SI joint injections since it has been 4 months since the last set?"

We make it as specific as possible and try not to ask more than 3-4 things. M's appointments always take more than an hour and we feel bad for taking up the doctor's time, but she is extra complex.

When things are bad, we see the doctor more frequently - like every 2 months. When things are good, we see her every 3-4 months.

I would try writing down your questions VERY clearly in advance so things are not left open to interpretation. And don't get stuck on expecting one answer - if you ask for another NSAID because Advil is bothering your stomach, and she suggests taking Zantac with it first, then try that. If that doesn't work, then move on. You won't always get the answer you expect but if your question is specific enough, you should get a good answer.

And ignore your mother. All the conditions you have cause pain. If you have RA, that can cause significant damage and impact your organs. You absolutely have to treat it.

There are some people who just don't get it. I would try to educate her on the diagnoses you have currently and if that does not work, just move on and every time she says something, just say "I am doing what the doctor ordered." It is very hard to argue with that.

I absolutely appreciate your help. Everything you said makes sense and I will definitely try your suggestions. I never thought about bringing in a list of questions for the doctor - I will try that and see what happens. If I don't hear back about the portal message I sent within a day or two, I'll call the office and ask again. I am also going to call the imaging center and get an appointment there to get the x-rays done. I was planning to call today but by the time I got home, I was so sore and tired that I had to rest.

Anyway, I'm supposed to see my grandmother this week and that always cheers me up so I'm looking forward to that. I'm also moving in the right direction regarding jobs because I'm getting callbacks for interviews! Yay!

 

[MissLeopard83]

I got some really good news today. I emailed the rheumy last night and she replied today and said that she called Mobic in to the pharmacy. I picked it up on my way home from my grandmother's house and it's 7.5mg to be taken twice daily as needed. She redeemed herself in my book and I'm very grateful she took it into consideration. She said if the Mobic (aka Meloxicam) doesn't work or has side effects for me that the next step is Voltaren (aka Diclofenac).

 

[Maya142]

That's wonderful - that is the usual dose (it can be taken once daily but we have found it's really needed twice daily). Make sure to take it after food so it does not bother your stomach. Good luck!

 

[MissLeopard83]

That's wonderful - that is the usual dose (it can be taken once daily but we have found it's really needed twice daily). Make sure to take it after food so it does not bother your stomach. Good luck!

I was honestly quite shocked and didn't think she'd do anything, at least until we got the lab results and x-rays back.

 

[cmack]

I was honestly quite shocked and didn't think she'd do anything, at least until we got the lab results and x-rays back.

That's great that you are getting somewhere with your new choice in doctors, MissLeopard. I hope you get some pain relief.

Maya, wow! You truly care about your family, that's plain to see. Your knowledge of these conditions is absolutely incredible, you must be a great mom to have. :thumright:

 

[akgirl]

MissLeopard - It sounds like you’re moving in the right direction! I’m so glad your new rheumatologist was responsive and you get to try the new prescription. I agree that some people just don’t get it. And it can be SO frustrating! I hope you get an appointment for your X-rays soon, so maybe you can get some more answers. And yay for getting called for interviews! I swear sometimes that’s the hardest part of getting a new job - just getting them to give you a dang interview. Keep us posted!

Maya - Can you come be my mom and come to appointments with me?! You seem so great and knowledgeable and like such a great advocate. Maybe you should become a doctor.....

I hope everyone is doing as well as possible! I’m so glad that it’s finally spring. Most of the snow around me has melted - yay! I know there are a ton of places having crazy and cold weather right now. I used to hate living in such a cold place, but maybe it’s not actually as bad as I thought.....it’s warmer here than in a lot of other places right now.

 

[akgirl]

Cmack - We basically just said the same things at the same time. I just rambled a bit more. Haha!

 

[cmack]

Were you reading my mind or something? ROTFL

 

[akgirl]

Or were you reading mine?!

 

[MissLeopard83]

MissLeopard - It sounds like you’re moving in the right direction! I’m so glad your new rheumatologist was responsive and you get to try the new prescription. I agree that some people just don’t get it. And it can be SO frustrating! I hope you get an appointment for your X-rays soon, so maybe you can get some more answers. And yay for getting called for interviews! I swear sometimes that’s the hardest part of getting a new job - just getting them to give you a dang interview. Keep us posted!

Maya - Can you come be my mom and come to appointments with me?! You seem so great and knowledgeable and like such a great advocate. Maybe you should become a doctor.....

I hope everyone is doing as well as possible! I’m so glad that it’s finally spring. Most of the snow around me has melted - yay! I know there are a ton of places having crazy and cold weather right now. I used to hate living in such a cold place, but maybe it’s not actually as bad as I thought.....it’s warmer here than in a lot of other places right now.

My x-rays are scheduled tomorrow at 2pm. I have my lab work scheduled on Saturday at 10:45am.

 

[Maya142]

Funnily enough, this is a system my daughter came up with as a teenager. I can't even take credit for it . But I have taught her to research her diseases so that she is well-informed and to think about what the main issues are before the appointment. We talk about them the night before the appt. and on the drive there. I still accompany her to almost all appointments, mostly because she is so complex that I feel like a second set of ears helps and it ALWAYS helps to have someone else to help you advocate for yourself.

Plus the only issues I know a LOT about are rheumatic ones...my husband and both daughters have inflammatory arthritis (AS). I have picked up a lot over the years because I've had to. My girls are pretty good, but my husband is a nightmare patient. Even getting him to see a doctor, despite having very severe AS, has been really difficult!!

Good luck tomorrow MissLeopard83. Hopefully you will finally have some answers soon.

I hope the rest of you are all hanging in there.

 

[MissLeopard83]

I'm noticing improvement with the meloxicam (Mobic). My neck doesn't sound nearly as "crunchy" or make that weird grinding sound. It kept doing it because I have prominent facet joint arthritis in my neck between C4 and C5. I read online that it can take about 2 weeks to fully get in your system for maximum benefit, but it's good to know that it's showing some improvement already. I really hope it works out because I also saw a study that showed Mobic has much less gastrointestinal symptoms than Diclofenac.

https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/485487

As for the lab work and x-rays, I have not been able to get them done yet. I've had things come up both days that they were scheduled. I have time, though, as the new rheumy said to do it in 3 weeks before I see her again. I've made another appointment for the lab work and may just do a walk-in for the x-rays as the imaging center usually doesn't have very many patients during the weekday if you go mid-day.

 

[dormere]

Hi this is my first day on your site. So please excuse the repeat as I did the introduction before I saw this group. I was hospitalized last Nov with internal bleeding. After 6 days of colonoscopies etc and scans that showed nothing I did the pill camera. Although it got stuck in a diverticulitis it showed bleeding ulcers and thickening of the bowel. So they did emergency surgery to remove that affected area. They looked for crohns etc. But it came back not enough markers. Was hospitalized again and again with severe pain and inflammation . Each time they repeated colonoscopies etc,scans,MRI and blood work. Was told after I had fistula which come with crohns. So they were 99 percent sure I had crohns after all. More visits more tests and they find I don't have enough markers for crohns or anything else but have to higher markers for everything. So sent to the surgeon who operated he thinks maybe scar tissue or the bowel settling down as it takes 6 months for the stitches to dissolve.. he ordered the MRI to compare to the last one. They have been wonderful, have never stopped looking for answers and have assured me that they will come up with answers eventually. It's just that I don't present with a simple problem that is easy to diagnose. I take Pentasa but the pain has returned on a regular basis. I seem to be full of trapped gas after eating and swell up. As they did biopsies at the last colonoscopy and found more ulcers, my worry is will the bleeding ulcers come back. They are working very hard as I lost 6 litres of blood and they can't release me because of the life threatening situation with my ulcers without a treatment plan and diagnoses.

 

[cmack]

Welcome dormere,

It sounds like you are in the hospital, that's the best place to get a diagnosis. I hope you are on the mend soon. Come here any time. Good luck to you.


Best Regards

Chris

 

[redcat414]

Hi everyone. I'm new to the forum as of today and just looking for any support, guidance, understanding.

I've been suffering with crazy GI symptoms for over ten years. I've seen lots of doctors and GI's over the years.

I finally have, what I THINK, might be a GI that is understanding and trying to help me. I've had several colonoscopies, endos, etc over the years and only during my last one did anyone find anything. I had inflammation in my ileum. I have diarrhea, abdominal spasms (I'm on Bentyl), abdominal pain, bloating, running to the bathroom constantly. These happen at least 3 days a week, every week.
After my doc found the imflammation he put me on Pred for several weeks to see how I responded. While I still had SOME GI symptoms, I felt remarkably better (other than the awful Pred side effects). He is hesitant to make a crohns diagnosis because, according to him, I should be sicker. Which I do understand that comment, I have a dear friend with crohns who almost lost her life because of it. But I AM sick. I've lost 2 good jobs in the past 8 years because of my absences. I just started a new job that I love and I am so scared to repeat this pattern.

My pillcam results came back all clear. My bloodwork however always has high inflammation markers. SOMETHING is going on. I get horrible lower back pain and just this week I'm wondering if it is connected. I also have a strange small rash, or inf lammed area on my arm. It's drying up now but did look like it had pus earlier in the week. I've never seen anything like it.

I go back to see him Tuesday with my mother-in-law, who is a former nurse as support. My last visit with him was VERY upsetting. He didnt seem to know my results as he said "since we didn't find anything on your colonoscopy" which is not true. He wanted to check my blood again and said if things were still high, he'd put me on Uceris. I dont want to be sick or want to be on medication but something is wrong! and has been for a long time. It's just been an endlessly frustrating and depressing road. I've lost jobs, missed so many events with my friends and family. I'm hoping he can help me next week. I just want some answers! Thanks for reading this all.

 

[ronroush7]

Welcome, redcat. I would keep fighting until you can get a diagnosis. I wonder if you should see a rheumatologist for the back pain. I hope you get answers soon.

 

[cmack]

Hi everyone. I'm new to the forum as of today and just looking for any support, guidance, understanding.

I've been suffering with crazy GI symptoms for over ten years. I've seen lots of doctors and GI's over the years.

I finally have, what I THINK, might be a GI that is understanding and trying to help me. I've had several colonoscopies, endos, etc over the years and only during my last one did anyone find anything. I had inflammation in my ileum. I have diarrhea, abdominal spasms (I'm on Bentyl), abdominal pain, bloating, running to the bathroom constantly. These happen at least 3 days a week, every week.
After my doc found the imflammation he put me on Pred for several weeks to see how I responded. While I still had SOME GI symptoms, I felt remarkably better (other than the awful Pred side effects). He is hesitant to make a crohns diagnosis because, according to him, I should be sicker. Which I do understand that comment, I have a dear friend with crohns who almost lost her life because of it. But I AM sick. I've lost 2 good jobs in the past 8 years because of my absences. I just started a new job that I love and I am so scared to repeat this pattern.

My pillcam results came back all clear. My bloodwork however always has high inflammation markers. SOMETHING is going on. I get horrible lower back pain and just this week I'm wondering if it is connected. I also have a strange small rash, or inf lammed area on my arm. It's drying up now but did look like it had pus earlier in the week. I've never seen anything like it.

I go back to see him Tuesday with my mother-in-law, who is a former nurse as support. My last visit with him was VERY upsetting. He didnt seem to know my results as he said "since we didn't find anything on your colonoscopy" which is not true. He wanted to check my blood again and said if things were still high, he'd put me on Uceris. I dont want to be sick or want to be on medication but something is wrong! and has been for a long time. It's just been an endlessly frustrating and depressing road. I've lost jobs, missed so many events with my friends and family. I'm hoping he can help me next week. I just want some answers! Thanks for reading this all.

Welcome, I hope you get answers next week. Come here any time, we are here for support.

 

[happy]

Welcome to the forum redcat.
There are several skin lesions that can be associated with inflammatory bowel diseases. What you are describing could be Pyoderma Gangrenosum. Here is a link to the Mayo Clinic with info about it:
https://www.mayoclinic.org/diseases-conditions/pyoderma-gangrenosum/symptoms-causes/syc-20350386
Most photos of the condition show really advanced cases. It can start out looking like this: https://www.researchgate.net/figure/Pustular-pyoderma-gangrenosum_fig2_6928017

Don't go looking on the internet for photos--it will be really graphic and severe. Mine happened during a time of remission of intestinal symptoms and fortunately cleared without treatment and did not scar.

Good luck with the doctor.

 

[MissLeopard83]

Hi everyone! Just wanted to give an update. I had continued to take Mobic for my osteoarthritis pain until yesterday but I don't think it's working. I ended up switching back to ibuprofen so I'm going to have to ask my rheumatologist to see if I need to try a stronger NSAID.

I had BAD fibromyalgia pain the last 2 days because I switched BC pills due to side effects of my last one and my body doesn't handle it very well. I felt like I had the flu because everything just HURT so bad. It happened when I got off the patch, too, and lasted 2 days. It got so bad last night that I ended up taking a leftover painkiller and ended up sleeping 12 hours and now I feel so much better, which I'm thankful for.

 

[ronroush7]

Glad you are feeling better, MissLeopard

 

[Izzie]

Hey everyone, it's been a while since I've been on.

Heading in for my post-operative EGD tomorrow. They're putting me under for this one since we've not had any luck with sedation the past few times. A little nervous but also want to know how it looks. If my esophagus and stomach are all clear, this will be my LAST appointment with my surgeon :O Very exciting, and a little scary too.

redcat - Welcome to the forums, and I hope you will find some answers soon!

 

[cmack]

It's good to hear from you Izzie, I wish you the best tomorrow. I'm so glad for you that this is the last appointment with the surgeon.

 

[Izzie]

It's good to hear from you Izzie, I wish you the best tomorrow. I'm so glad for you that this is the last appointment with the surgeon.

Thank you! Everything went well and looked good. Waiting for biopsy results to come back in 4-6 weeks. They did fully put me under, intubation and all, though - which I wasn't too keen on. But the anesthesiologist insisted it was what they felt was safest considering my history, so I agreed. Woke up nice and easy, no nausea. Overall a decent experience

 

[Anna's Bandit]

4-6 weeks is a long time ?

Hope you feel better soon.

 

[cmack]

4-6 weeks is a long time ?

Hope you feel better soon.

It really is a long time if you are the one waiting for results, I know that for sure! It actually sounds rather typical, even here with Canada's relatively decent health care. In my experience it's usually at least a week for results, depending on the lab. If you owe the hospital any money they will send you an invoice nearly immediately, so they can do things fast if they need to. ;^) They also go faster if they are pushed by the doctor in charge or if you are admitted for emergency reasons. I once had biopsy results while in hospital within 3 days or less, pretty sure it was less. Morphine definitely gets the brain frazzled when trying to recollect those times, maybe that's a blessing.

 

[Anna's Bandit]

This time things went really fast as far as getting all my tests completed and scheduling my GI visits.

My GI is very busy and appointments are hard to come by but I got in 2 weeks after I called his office. My GI is really busy and he has several offices and he performs colonoscopies/endoscopies and he also does hospital calls. I was happy to see him with in 2 weeks because I didn't want to wait a month.

As far as all my tests I was very proactive in getting things done in a timely manner. I got my stool sample into the lab right away. I did my blood draw as soon as I could. And I scheduled my CT scan as soon as I was able to get an appointment. And my colonoscopy /endoscopy was performed a lot earlier than originally scheduled because myself and my doctor's office thought my sister was going to stay in town a few extra days to drive me to my procedure. I ended up using a care giver service instead of my sister but I still kept my early April appointment instead of having to wait until May.

I was even supposed to have an appointment with their Family Nurse Practitioner at my GI's office in May as a follow up to my colonoscopy / endoscopy and I said no way and I said I wanted to see the GI not their Family Nurse Practitioner. So instead of waiting until May to see the Family Nurse Practitioner I actually saw my GI in April.

I had to have a chest X-ray and another blood draw after my recent GI visit so that he could check me for TB and hepatitis before he prescribed the Humira.

My GI even helped set me up with a Humira Nurse Ambassador to start the process. I need my Health Insurance Companies approval and I need help from a foundation for the free Humira.

I did not have to do all these things alone I had help from my GI and the Humira Nurse Ambassador. This made me feel really good because I have done so many other things all by myself and I was grateful for the help.

The Humira Nurse Ambassador came to my apartment and she explained everything about Humira and she explained about a foundation to help me with the cost and I filled out paperwork.

My GI's office staff actually faxed my paperwork over to the Humira people. My doctor's office staff is amazing.

So my first visit was March 2nd and now my last visit is May 11th. Everything got done in 2 months and that is almost unheard of.

And then there is this forum. I joined back in February 2018 and I have been reading post after post after post and learning so much. I learned so much that when I went to see my GI after my colonoscopy/endoscopy I already knew that he was going to say that I had Crohn's Disease. I had seen the preliminary colonoscopy /endoscopy test results and as soon as I saw terminal ileum and inflammation and stricture I knew it was Crohn's.

Well, darn, it is 10:05pm and I wrote a "novel" again.

Take Care.

 

[Anna's Bandit]

PS: I did not even know Care Giver services existed until my doctors office referred me to a Care Giver service. It's amazing that from now on I have a service to call to take me to procedures.

 

[Izzie]

Lynda - So glad you're having a good experience with your healthcare team!

4-6 weeks is a pretty long time, but they're "just" biopsies for eosinophilic esophagitis which while not a fun condition doesn't scare me as much as things like cancer etc. which have already been ruled out.


I will say though that I've not had a good few days since the scope. I feel like someone ran me over with a truck. Also developed an awful cough after the procedure which as it turns out was probably due to a minor aspiration since they gave me liquid meds right before putting me under - while I was laying down. I have severe esophageal dysmotility and cannot swallow while laying down ever. So that was dumb of me not to stop them from doing. Oh well. Have been taking calls and doing what I can from bed today Since my esophagus looked perfectly fine even though I had been eating/dinking reflux triggers for many weeks prior - I am now allowed to drink coffee again. Trying not to overdo it of course but a nice cup of coffee every now and again is such a treat. Very happy.

Now I suppose the next chapter of my health journey is about to start. I've had other, in comparison more minor issues that have also followed me the past few years, and now that the big issue is dealt with it's time to deal with those. My mucous membrane dryness issues are being followed up by an oral surgeon; I will have a lip biopsy to check for Sjogren's syndrome. I have 2 out of 3 necessary markers for diagnosis, but need a last one to make sure. I'm not at all sure that I do have Sjogren's, I still think it might be a strange lingering effect of PPI medications, but we'll see.

Also having some further tests regarding my chronic constipation in the near future.

Never ending story, huh?

I'm grateful to have come this far, though. Hope everyone else is doing well!

 

[ronroush7]

Wishing you the best, Lizzie.

 

[sarahfh]

Izzie I'm glad the endoscopy seemed okay I hope the biopsies are all clear for you too!
With the constipation it might be worth asking about a colonic transit study, as well as maybe broaching the gastric emptying study for you upper GI symptoms. If you have poor motility in one part of your digestive system there is a high chance of it being elsewhere too. At the beginning I had diarrhoea which my dietician now thinks was malabsorption jut now I have constipation as my colon has slowed as well as my stomach.

I'm really frustrated, I've got another infection in my GJ stoma and it hurts so bad, I'm taking my full four tramadol a day and still can't stand up straight! Just waiting on swabs coming back for a targeted antibiotic and using iodine dressings to try and help too. It was just over a month since my last one so that's really annoyed me, I'm just hoping this isn't how it will be the whole time I have the tube!

 

[cmack]

I hope the pain eases for you soon soon, Sarah. That sounds really sore, take good care and do complain to the doctors office about pain if you need to.

 

[MissLeopard83]

Hi everyone! I've been having allergy symptoms more than usual lately and they are related to the allergy test I had last year at the allergist's office. I found out last year that I am allergic to maple/box elder among some of the results. Last week, I drank a new beverage that contained guarana in it and broke out in splotches all over my face and started to itch like crazy. Did you know that guarana is related to the maple family? I sure didn't! It turns out that I need to stay away from the soapberry family (aka Sapindaceae). That includes lychee, ackee, and horse chestnuts. Luckily, I aborted the allergic reaction with Allegra and Pepcid (two different antihistamines that work on different receptors). I suspect the reason that I am allergic is that many plants in the family are laticiferous - meaning they secrete latex. I am allergic to latex. Kind of neat, right?!? Now I know what to stay away from.

Anyway, I started bleeding from my rectum lately and it is mostly red blood which likely means my internal hemorrhoids are flaring or I have fissures. I have seen maroon blood on two different occasions, however, and that worries me because I am taking an NSAID for my osteoarthritis. I wanted to make an appointment with my GI but she is booked up for the next few weeks. I found another GI in the group who is MUCH closer to home (the other is closer to where I used to work until a few months ago) and plan to call her for a consultation. I doubt it's anything serious, but I like to be on the safe side.

Lastly, I got accepted to a program to receive my Master's in Social Work and start on May 29th! I am so excited! I can't wait to go back to school!

 

[Anna's Bandit]

MissLeopard :

Congrats on your acceptance

 

[cmack]

Great news about school, MissLeopard! Right on!

Wow, I had no idea about the latex secretion of plants. I always thought it was only trees that made latex.

Thanks for the update, I hope you feel better soon heath wise.

 

[Izzie]

Hi everyone,

I'm in a weird flare again. Burning pain all up my stomach and esophagus... And now I KNOW this is not reflux. Very confusing.

I'm actually starting to consider giving the FODMAP diet a real try. It's been recommended to me a few times by doctors along the way but my focus was always on my reflux disease and it wasn't really doable with my issues swallowing and reliance on nutrition supplementation for a while before my surgery... I do still get bloating and pain and weird GI issues in "flares" though. I don't know, is the FODMAP approach the best one? Has anyone here done it?

I've been kind of overwhelmed by dietary "tips" from people lately. Tried the autoimmune paleo thing which did give me more energy but I feel like meats trigger my burning pain a little bit sometimes. And then people who believe in that kind of dietary approach tell me my autoimmune issue is going to get worse if I eat so much as a lentil And then other people are nagging me to go vegan or I'll never be healthy. And blah blah blah. Quite stressful to be honest. I do believe diet is important to healthy but it's so hard to navigate all the different approaches and separate the dogma from the science...

 

[ronroush7]

Hi everyone,

I'm in a weird flare again. Burning pain all up my stomach and esophagus... And now I KNOW this is not reflux. Very confusing.

I'm actually starting to consider giving the FODMAP diet a real try. It's been recommended to me a few times by doctors along the way but my focus was always on my reflux disease and it wasn't really doable with my issues swallowing and reliance on nutrition supplementation for a while before my surgery... I do still get bloating and pain and weird GI issues in "flares" though. I don't know, is the FODMAP approach the best one? Has anyone here done it?

I've been kind of overwhelmed by dietary "tips" from people lately. Tried the autoimmune paleo thing which did give me more energy but I feel like meats trigger my burning pain a little bit sometimes. And then people who believe in that kind of dietary approach tell me my autoimmune issue is going to get worse if I eat so much as a lentil And then other people are nagging me to go vegan or I'll never be healthy. And blah blah blah. Quite stressful to be honest. I do believe diet is important to healthy but it's so hard to navigate all the different approaches and separate the dogma from the science...

You might ask your doctor about protonix for the swallowing issue m

 

[MissLeopard83]

Hi everyone! I thought I'd check in and I hope everyone had a good week. Can't believe it's Memorial Day weekend already!

I've been having some rough days lately. Earlier this month, I noticed I was getting painful cracks in the corners of my mouth and nothing seemed to stop them - I used lip balm and cold sore treatment. They would bleed and crust over. I remembered that Plaquenil can cause skin issues, so I decided to see if discontinuing it would stop it. My rheumy told me to stop taking it if a rash occurred. It didn't seem to make a difference and my joint pain became unbearable. It is apparent that Plaquenil is working because the pain lessened after being back on it within a few days.

The pain is pretty bad lately in my neck, back, and buttock areas. Tonight, my left buttock is really sore and I am currently laying on my stomach because sitting on it hurts too much. We haven't gotten the lab test results back yet so I hope to know something soon.

On a more positive note, I start my graduate studies on Tuesday towards a Master of Social Work degree! The classes have been opened online today and I've been looking around to become oriented. I am so excited! I still haven't found a job so I'm glad to be doing something meaningful while I continue to search!

 

[ronroush7]

Wish you the best, MissLeopard.

 

[cmack]

It's great to hear from you, MissLeopard. I'm happy that you still get to work towards your educational goals even though your health isn't perfect. Good luck to you, I hope you rock your Masters Degree! I think you would make a great social worker, you are very kind.

 

[Anna's Bandit]

I haven’t posted in a while, but I have been reading everyone’s posts. I have nothing new to report, but I need to complain really fast, and you guys are my favorite people to complain to.

I feel like I’m never going to get better. Like I’m 99.9% sure I’m going to be sick forever, and I’m never going to be able to live the life I want. My digestive issues are still my number one complaint. But my second most troubling problem is this dang anxiety!! I never had anxiety like this until about a year ago. Doctors love when I tell them I have anxiety, because then they can just blame all my problems on it. But I don’t care what anyone says; I know my anxiety is related to whatever is wrong with me. And not even just related.....whatever is going on with me is causing my anxiety. I can’t drive more than a few blocks. The other day I drove a few blocks away and had to go to this scary stop light (who even knew stop lights could be scary?!), and when I told my husband and my dad, they both told me they were really proud of me. I never thought I’d see the day when driving a few blocks would make people proud of me. And for the record, before all this, I used to think driving was relaxing!!! And don’t even get me started on me trying to go to the store. I just went to the store with my dad. I was there for about two minutes before I started freaking out. I got dizzy and it felt hard to breathe, and I started panicking. I wasn’t sure if I was going to make it out of there! I did though, and now I’m sitting in the car, typing this, feeling sorry for myself.

Anyway, thanks for letting me vent. I hope you guys are having a better day than I am!

I know this is an old, old post. But this same thing happened to me. A few years ago I was driving alone all over the state of Arizona site-seeing. Did that for years. Even drove to other States by myself and was very confident. Now I like to stay within a five mile radius from my apartment when driving, except when my doctors offices are farther away than that.

 

[cmack]

Sounds familiar, Lynda. I can relate too. Darn diseases! I feel for you bud.

 

[Anna's Bandit]

You have to remember that these doctors are very rushed. They are trying to deal with getting everything into the computer as well as fit in as many patients as possible, as well as dealing with insurance companies who make their lives hell when they are appealing for biologics etc.

My daughter is extremely complicated - she has AS, Crohn's, Gastroparesis and many other conditions. She is on 20 medications and sees about 16 specialists. One of the things we do is that we go in with a typed update of how she is doing in each area - in her case, that means how her GI stuff is, how her AS symptoms are (both inflammatory and damage), chronic pain symptoms, endocrinology symptoms and so on. We include medication changes and basically just cover what has happened in the last 3 months in a 2-3 bullet points under each category (GI, rheumatology, pain management, endocrinology, hip orthopedic surgeon, oral and maxillofacial surgeon, PT and so on).

We also provide her with a list of medications. They are in the system of course, but it's simpler for her to have a typed list to refer to since M has so many.

Lastly, we give her a typed list of questions and concerns we want addressed. We make them as specific as possible. For example, one of yours could be "Can I try a different NSAID to see if it is easier on my stomach?" One of hers a couple months ago was "Can I try a different DMARD to see if it helps my hands and feet?" or "Can I have SI joint injections since it has been 4 months since the last set?"

We make it as specific as possible and try not to ask more than 3-4 things. M's appointments always take more than an hour and we feel bad for taking up the doctor's time, but she is extra complex.

When things are bad, we see the doctor more frequently - like every 2 months. When things are good, we see her every 3-4 months.

I would try writing down your questions VERY clearly in advance so things are not left open to interpretation. And don't get stuck on expecting one answer - if you ask for another NSAID because Advil is bothering your stomach, and she suggests taking Zantac with it first, then try that. If that doesn't work, then move on. You won't always get the answer you expect but if your question is specific enough, you should get a good answer.

And ignore your mother. All the conditions you have cause pain. If you have RA, that can cause significant damage and impact your organs. You absolutely have to treat it.

There are some people who just don't get it. I would try to educate her on the diagnoses you have currently and if that does not work, just move on and every time she says something, just say "I am doing what the doctor ordered." It is very hard to argue with that.

I know this is an old post, but thank you for sharing. I thought I was nuts when I decided to start keeping my "Colon History" in a file on my computer. And I keep it updated. I print it out to give to doctors. I also have a list printed out for "Surgeries" and "Health Conditions" and "Medications." And it is a very good idea to organize my thoughts the night before my appointment(s). I also try to keep it simple during my appointment(s) and not ask unnecessary questions and ramble on. All my doctors are rush, rush, rush.

 

[MissLeopard83]

I forgot to mention earlier that I made an appointment to get approved for medical marijuana in my state. It's on this Wednesday and I'm very hopeful! I have several different conditions it can be used for but I'm hoping it will help most with my fibromyalgia and osteoarthritis so I can stay away from narcotics. I've heard very good things about it helping with fibromyalgia pain - even better than the 3 prescriptions approved by the FDA to treat the pain.

Hope everyone had a nice long weekend!

 

[Izzie]

Hello everyone!

Can tell it's been a bit quiet in here, I'm hoping because you're all busy feeling good and enjoying your summer

 

[cmack]

My best to everyone. Good to see you Izzie.

 

[Anna's Bandit]

:bigwave: Hello Izzie

 

[Izzie]

Hello friends!
A little health update from me. All of my reflux symptoms came back full-force at once two weeks ago. Just like that, all of them. I'm as sick as I was before my reflux surgery all of a sudden.

My suspicious dry mouth issue which had been starting to slowly slowly get better - came back within two days when my doctor tried to put me back on Zantac. I really do not tolerate any reflux medication. Have to stop taking them because I'm not up for another several months of my mouth so dry I can't swallow or speak, which is what happened last time... Kind of at a loss, waiting on some tests. I have heartburn as soon as I eat for hours and hours. Even spit blood the other day, probably from the acid burning my throat. And my mouth and eyes are so horribly dried out, I'm hoping it'll resolve itself since I was only back on the meds for a couple of days.

I basically can't eat at all. Got some supplement drinks from my dietician the other day. They trigger heartburn and pain as well, but not as bad as solid food...

Been having really awful pain in the splenic flexure area as well as stabbing pains in my back. Also, as soon as I've eaten.

Had some bloodwork and turns out I'm severely anemic (again). Iron infusion in a few weeks. Can't help but wonder if I've ripped an internal stitch or something that caused a bleed. My iron levels and hemoglobin have been stable prior to this sudden return of symptoms.

Feeling quite sorry for myself. My family is no help. They're burned out when it comes to my being sick, so they honestly don't even care anymore. They say they do, but mostly they roll their eyes at me and tell me I really should go on antidepressants (as if that helps physical illness...)

Trying to land an appointment with a new general surgeon as I'm not too happy with mine, but it might take months. And with this return of symptoms I'm not sure how I'll get on. Weight is dropping off at a rapid rate. I'd managed to gain back most of the weight I lost after surgery but now things are declining quite fast...

I hope you're all enjoying your summer, would love to hear how you're all getting on.

 

[cmack]

Hey Izzie,

I'm sorry to hear about the reflux and all the side effects of the zantac. You should be careful, If you think you have a bleed you could call the doctors office and ask what to do. I would get myself checked if it were me. My family doesn't really "get it" when it comes to what I deal with either, I can relate to your frustrations there.

I'm pretty good, thanks for asking. I'm a little too busy, but I suppose it keeps things interesting. Summer has been a little slow coming on here and there is still some chilly weather too. It's good to hear from you, Izzie. Keep in touch and let us know how you are progressing. You have my support.

 

[Izzie]

Hey Izzie,

I'm sorry to hear about the reflux and all the side effects of the zantac. You should be careful, If you think you have a bleed you could call the doctors office and ask what to do. I would get myself checked if it were me. My family doesn't really "get it" either when it comes to what I deal with either, I can relate to your frustrations there.

I'm pretty good, thanks for asking. I'm a little too busy, but I suppose it keeps things interesting. Summer has been a little slow coming on here and there is still some chilly weather too. It's good to hear from you, Izzie keep in touch and let us know how you are progressing. You have my support.

Summer came on over night here, we've had a record heat wave. Nice for some, I guess, but when you're stuck inside wanting to sleep it's annoying I'm keeping an eye on things and am in near-constant contact with various doctors so hopefully it'll be fine. I'm so grateful I live in a major city these days, with actual hospitals. I grew up in a small town with no ER, nothing but a sorry excuse for a clinic with horrible opening hours, so having 24 hour access when you need it is such a gift!

Hope you can find the time to enjoy some good weather when it comes! :hug:

 

[Jabee]

Hi Izzie. I’m so sorry to hear things have gotten really awful again. I’ve been doing some reading about your symptoms and I came across the following article (I hope the link works):

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1834-7819.2010.01196.x

I’ll check it after I post this and then see if I can correct it if there are problems. I really wish I could offer you more and better advice, but the most I can come up with is keep working with your doctors and pushing them to work with you. I’m so sorry things are difficult for you with your family; after having chronic near daily migraines for 20 years I have found that people lack even a basic understanding of what that means, and it you are not very visibly sick they often assume you’re just using an excuse.

Try to take it one day at a time. I wish your doctors could do something to help. Please take care.

Augusta

 

[Izzie]

Hi Izzie. I’m so sorry to hear things have gotten really awful again. I’ve been doing some reading about your symptoms and I came across the following article (I hope the link works):

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1834-7819.2010.01196.x

I’ll check it after I post this and then see if I can correct it if there are problems. I really wish I could offer you more and better advice, but the most I can come up with is keep working with your doctors and pushing them to work with you. I’m so sorry things are difficult for you with your family; after having chronic near daily migraines for 20 years I have found that people lack even a basic understanding of what that means, and it you are not very visibly sick they often assume you’re just using an excuse.

Try to take it one day at a time. I wish your doctors could do something to help. Please take care.

Augusta

It's like your reply was a prophecy, literally the day after you replied to me I met my new (temporary, sadly) GI for the first time and he was AMAZING. Absolutely amazing doctor. I'm very pleased. Managed to sum up the full picture of my strange health problems in one 30 minute appointment, and came up with a comprehensive follow-up plan for pretty much every possible scenario. Just like that! It's amazing what a difference it makes to have a knowledgable doctor who is a good listener and trusts your words.

I was put on some sort of immunosuppressant eyedrops to combat my insane dry eye, they've referred me for lip biopsy as a final test for Sjogren's, I'm going to have a more advanced pH study done to check for recurring reflux, they're doing an iron infusion and a full lower GI workup next week (! so fast!!), was put back on motility medication and they're considering putting me on some kind of med for nerve pain AND I got to see a dietician right away after my appointment and she prescribed supplement shakes since I'm losing a lot of weight. THIS is what I've been waiting for. I could kiss that damn doctor :ylol:

 

[Jabee]

Izzie:

I’m so glad you’ve finally gotten to see a doctor who actually wants to DO something instead of pawn you off. That plan sounds really sensible. Something is clearly wrong; they just need to figure it out with you. Please let us know how the tests go and whether the shakes and other medications are helping.

Augusta

 

[MissLeopard83]

Hi everyone!

I hope all of you have been doing well. I have been very busy with my studies for my MSW and I am thoroughly enjoying it. One of my classes ends tomorrow and the other continues for another 4 weeks.

Also, I'm very busy this upcoming week. My hormones have always been out of whack due to my Polycystic Ovaries and my former endocrinologist ran out of options since I was on a lot of different medications and they interacted with stuff she wanted to put me on (thankfully, I managed to get off one antidepressant, Wellbutrin, which helped decrease my anxiety and insomnia, and I am now on just Effexor XR and a mood stabilizer). I am seeing a new reproductive endocrinologist who specializes in PCOS and they have a nutritionist on-site so I'm hoping that this will work out. I was put on a "mini pill" since I cannot use estrogen as it affects my moods and causes other undesirable side effects.

I am still trying to get the right treatment for my fibromyalgia and arthritis issues. I am hoping to see a pain management specialist to look into injects for my neck since I have facet joint sclerosis in C4 and C5. I'm hoping he will also refer me for physical therapy since they have one within their office.

 

[cmack]

It's good to hear from you, Miss Leopard. I'm so happy that you are enjoying your studies. That's good about getting off the Wellbutrin too. I hope you get great grades and your medical issues improve. It sounds like you have a lot going on at the moment. Be sure to include a few well deserved breaks. Cheers!

 

[MissLeopard83]

It's good to hear from you, Miss Leopard. I'm so happy that you are enjoying your studies. That's good about getting off the Wellbutrin too. I hope you get great grades and your medical issues improve. It sounds like you have a lot going on at the moment. Be sure to include a few well deserved breaks. Cheers!

Thanks. I just got the results back from some of the blood work I had done the other day and it looks like I'm still anemic which would explain why I'm still fatigued. I'm still waiting for the results for the CRP and others to check for inflammation and antibodies. I also asked my rheumy for a script for another NSAID like Diclofenac/Voltaren or something else since the Mobic/meloxicam doesn't work any better than Advil now.

 

[Izzie]

MissLeopard; anemia is a pain, currently dealing with it myself. Hope you get some help with it ASAP!

Random q: Has anyone else her had trouble with ulcers in the mouth and throat? Not sure what this is yet, I've had it on and off for about a year. Thought to be medication-related stomatitis the first few months but it just keeps coming and going. Might be reflux-related though I doubt it. Is it in any way possible to have Crohn's present in your mouth and throat? My continuing stomach troubles is making my doctors consider IBD again even though I was evaluated for it a few years ago with negative results across the board. They did never check my small intestine however.

 

[cmack]

Yes, unfortunately crohn's can show up anywhere between the mouth and the anus. I have heard of others with the mouth sores likely from crohn's. I hope they improves soon, there could be other causes as well... such as those you mentioned. Gargling with warm salty water may ease the discomfort a little. Hoping you feel better.:rosette2:

 

[MissLeopard83]

Well, some more results came back from the bloodwork and they were all normal (YAY!) and I just had the hand and foot x-rays done. I always get a disc for my records and, to be honest, I don't see anything abnormal (another YAY!). My pain, though, is most likely from the fibromyalgia or another source. The HLA-B27 antigen test is still in processing, so that can't be ruled out. I need to make another appointment with the doctor. Everything has been really crazy the last 3 months. My mental health, until the last month, has been really bad but my psychiatrist and I finally got it sorted and I'm getting therapy again. The stress level has gone way down, which is wonderful, and I LOVE my classes for my MSW! Things finally seem to be sorting out.

Also, I asked my doctor about using another NSAID since the Mobic was too weak. Her PA called in Celebrex without noting that I have a sulfa allergy (duh!) and the doctor called in Nambutone (Relefen) today. Hopefully, it works. We had talked about Diclofenac/Voltaren but I guess she wants me to try other stuff first since Voltaren is pretty strong from what I've read.

 

[MissLeopard83]

Well, the HLA-B27 antigen test came back and was negative (YAY!).

 

[Maya142]

My daughter did great on Nabumetone. It was much easier on her stomach than her Voltaren. I know Fibromyalgia is a frustrating diagnosis because there is no single treatment (although most of the studies I have seen suggest physical therapy works best). But it is good that no permanent damage is being done to your joints or connective tissue due to an autoimmune/inflammatory process.
Good luck!

 

[MissLeopard83]

My daughter did great on Nabumetone. It was much easier on her stomach than her Voltaren. I know Fibromyalgia is a frustrating diagnosis because there is no single treatment (although most of the studies I have seen suggest physical therapy works best). But it is good that no permanent damage is being done to your joints or connective tissue due to an autoimmune/inflammatory process.
Good luck!

Hi Maya!

I was hoping you'd respond as I wanted to thank you for all your advice. While I wish I didn't have fibromyalgia, it definitely could be a lot worse. I will be seeing the doctor again on the 17th at 2:30pm so we should have all of the results by then. There are still a few blood tests in processing (mostly antibody tests) and I am still awaiting the official read of the x-rays by the radiologist which should be done in the next business day or two. While I know RA can be seronegative, I'm hoping I don't have it, but we shall see what the doctor says. I'm still unsure what is causing my hands to swell and redden since I'm not eating a lot of salt. One thing that makes me wonder is I was put on a new medication - an ACE inhibitor - and it says that it can increase inflammation due to bradykinens in the blood but I would have thought it would have shown up on the CRP. Anyway, I'll keep you guys updated.

 

[Izzie]

I'm having such an unlucky week, after scheduling issues with my iron infusion, on the day we finally got an appointment to work - the nurse decided I was still too sick (low-grade fever) to have it done. Anemia is really kicking my behind right now.

And my throat is sore 24/7 which really grinds my gears. Oh well. Another GI appointment Monday, hopefully to schedule some further tests. Must say I've been super pleased with my GI clinic recently. So helpful and quick and professional!

 

[MissLeopard83]

Unfortunately, the nabumetone is doing nothing for my arthritis pain. I've taken it three times now and I can only take it every 12 hours. It's like I've taken nothing because the pain doesn't change at all. Looks like I'll be talking to the rheumy about other NSAIDs. I've read reviews online for people who have used Feldene (piroxicam) and Voltaren/Zorvolex/Arthrotec (all forms of diclofenac; the last contains something to protect the stomach); and they get much better results when they are used for osteoarthritis and/or rheumatoid arthritis pain.

 

[Maya142]

It's very individual - it REALLY depends on the person. My husband is on Mobic, one daughter is on Celebrex and one daughter is on Nabumetone.

She tried Arthrotec and it was a bust, but it may work for you. It's worth a try. It really took a long time to find the right one for her. It's just trial and error unfortunately.

 

[MissLeopard83]

It's very individual - it REALLY depends on the person. My husband is on Mobic, one daughter is on Celebrex and one daughter is on Nabumetone.

She tried Arthrotec and it was a bust, but it may work for you. It's worth a try. It really took a long time to find the right one for her. It's just trial and error unfortunately.

Yep, I was really hopeful it would work for me, but it was like taking sugar tablets. I gave it 2 other tries but it was hopeless. I hate the idea of taking a stronger NSAID because of worries about GI problems or kidney problems, but I really want to be more active and get rid of this pain. I'm doing gentle exercises so as not to risk injury or further damage. I used to love doing Zumba but it's too high impact for me right now. Hopefully, I'll be able to do it again in the near future.

I'll let you know what the doctor says on Tuesday. I'm anxious to see her since I haven't seen her in a while.