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my little penguin said:
I would definitely ask if there are different nsaid options
Ds tried multiple NSAIDs as well
Ended up tolerating Celebrex very well
Even had a good scope on it
No issues
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I thought about asking about Celebrex but when I researched it online, it said that it was contraindicated in people with allergies to sulfa drugs which, unfortunately, I have. I cannot use Bactrim or other sulfa drugs because my asthma gets really bad and I get a rash. I know there are others out there but she didn't bring them up.

I'm seriously looking at getting a second opinion because I don't see her again for another 2 months (at her request). I have found a new rheumatologist about 5 minutes away from my house which is MUCH better since it takes about 40-45 minutes to get to the one I've been seeing. I'm going to call tomorrow and see if I can get in to see her. Hopefully, she can provide more insight into pain control, even if it is OTC medications, so I can have more direction.
 
cmack said:
Hi MissLeopard,

First off, I'm glad the plaquenil is already helping. That is great to hear. :)

Regarding the discussion you had involving opiates. I had a talk with my GP on day one, I told him that I likely needed certain, (possible substances of abuse) to treat my pain. I gave him my word that I would prove it to him, over time, that I was being responsible. Things worked out well. First you have to get the chance to prove yourself, there is the tough part. I thought I would tell you how I approached it.


Regards,

Chris
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I'm glad that your doctor was not as quick to shut you down. I don't like the idea of using narcotics/opiates but I also don't like feeling so bad that I struggle to do daily activities. Fibromyalgia really sucks because it's always a toss-up as to how you are going to feel when you wake up in the morning. Hopefully, I can get in to see someone for a second opinion soon and find more options, whether or not it includes painkillers.
 
Just to give you guys an idea of what I looked at before discussing Tramadol with my doctor, these are articles that I read that gave me insight as to how it could help with fibromyalgia pain:

https://fibromyalgianewstoday.com/2...-improves-quality-life-chronic-pain-patients/

https://www.verywell.com/ultram-for-fibromyalgia-716075

http://www.fibromyalgiatreating.com/pain-medication/

http://www.amjmed.com/article/S0002-9343(03)00116-5/abstract

These are only a few of the articles I looked at but they all say the same thing - Tramadol has been proven effective for treating moderate-to-severe fibromyalgia pain (better than any other painkiller).
 
You need to look for studies on PubMed.

But a few caveats about Tramadol -
Has the same risk of serotonin syndrome - so it would not be prescribed if you are on two anti-depressants. My daughter was only on one anti-depressant and her pain management doctor and rheumatologist were hesitant to put her on Tramadol. They did, and she was fine, but the two anti-depressants might be why your doc hasn't mentioned it.

It has side effects - if Flexeril caused side effects at 2.5 mg (which is a BABY dose), so will Tramadol, I would guess. Expect nausea, sleepiness, feeling "fuzzy." I remember you having slow gastric emptying - Tramadol can worsen that.

The good news is over time you get used to them but the bad news is over time you get tolerant to opioids and need higher and higher doses. That is why doctors are now not using them for chronic conditions as much as possible.

I think another reason might be the opioid epidemic - doctors are now VERY hesitant to prescribe opioids, even mild ones like Tramadol. They want you to try everything else first.

Things you could try:
Switching anti-depressants - some anti-depressants work well for pain, including Fibromyalgia pain. Cymbalta is one.

Trying an anti-convulsant (might be allowed even with antidepressants - my daughter takes Gabapentin with an anti-depressant).

Trying injections into the joints that hurt - steroid injections. So for example, if you are having lower back pain, they may do facet joint or SI joint injections.

Trying another NSAID - I would also about the more gut friendly NSAIDs. Advil is NOT one of them. My daughter (who has a very sensitive stomach!) can tolerate 3 - Mobic, Celebrex and Relafen. She does need a PPI with them, but they work very well for rheumatic conditions.

I'm not anti-Tramadol at all, in fact I am pro-Tramadol for occasional use! I think it works well and for MOST it has few side effects. My older daughter takes it occasionally. I just think, unfortunately, with the opioid epidemic, you may have a hard time getting someone to prescribe it :(.

It is very frustrating to us too that patients who are responsible and really need pain relief are now suffering because it is getting harder and harder to get opioids. I have a daughter with very severe AS and significant joint damage and her quality of life would be a lot worse without them.

My younger daughter's rheumatologist told us at the first appt. that she NEVER prescribes opioids and you have to go to pain management for that. Often rheumatologists only take care of the disease - and they consider the pain that comes with it a pain management doctor's problem if it is not controlled by NSAIDs, DMARDs and biologics.

Another reason might be that you do not have a proper diagnosis yet, right? Currently they are just calling it a connective tissue disease which is vague. Your rheumatologist doesn't know what you have and until she does, she may be more hesitant to prescribe certain drugs. That is probably why she put you on Plaquenil - it works for some patients but it's a pretty mild drug. Probably the mildest DMARD she could have put you on.

The best treatment for fibromyalgia is actually exercise. There are plenty of studies that support that. I would try to get 30 minutes of aerobic exercise a day - it can make a huge difference. It doesn't have to be intense exercise - even walking counts.

Good luck!!
 
Medications: The U.S. Food and Drug Administration has approved three drugs for the treatment of fibromyalgia. They include two drugs that change some of the brain chemicals (serotonin and norepinephrine) that help control pain levels: duloxetine (Cymbalta) and milnacipran (Savella). Older drugs that affect these same brain chemicals also may be used to treat fibromyalgia. These include amitriptyline (Elavil) and cyclobenzaprine (Flexeril). Other antidepressant drugs can be helpful in some patients. Side effects vary by the drug. Ask your doctor about the risks and benefits of your medicine.

The other drug approved for fibromyalgia is pregabalin (Lyrica). Pregabalin and another drug, gabapentin (Neurontin), work by blocking the over activity of nerve cells involved in pain transmission. These medicines may cause dizziness, sleepiness, swelling and weight gain.

It is strongly recommended to avoid opioid narcotic medications for treating fibromyalgia. The reason for this is that research evidence shows these drugs are not of helpful to most people with fibromyalgia, and will cause greater pain sensitivity or make pain persist. Tramadol (Ultram) may be used to treat fibromyalgia pain if short-term use of an opioid narcotic is needed. Over-the-counter medicines such as acetaminophen (Tylenol) or nonsteroidal anti-inflammatory drugs (commonly called NSAIDs) like ibuprofen (Advil, Motrin) or naproxen (Aleve, Anaprox) are not effective for fibromyalgia pain. Yet, these drugs may be useful to treat the pain triggers of fibromyalgia. Thus, they are most useful in people who have other causes for pain such as arthritis in addition to fibromyalgia.

For sleep problems, some of the medicines that treat pain also improve sleep. These include cyclobenzaprine (Flexeril), amitriptyline (Elavil), gabapentin (Neurontin) or pregabalin (Lyrica). It is not recommended that patients with fibromyalgia take sleeping medicines like zolpidem (Ambien) or benzodiazepine medications.
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These are the new EULAR guidelines:
http://ard.bmj.com/content/76/2/318

Another article: http://www.mdpi.com/2227-9059/5/2/22/htm
 
Maya142 said:
You need to look for studies on PubMed.

But a few caveats about Tramadol -
Has the same risk of serotonin syndrome - so it would not be prescribed if you are on two anti-depressants. My daughter was only on one anti-depressant and her pain management doctor and rheumatologist were hesitant to put her on Tramadol. They did, and she was fine, but the two anti-depressants might be why your doc hasn't mentioned it.

It has side effects - if Flexeril caused side effects at 2.5 mg (which is a BABY dose), so will Tramadol, I would guess. Expect nausea, sleepiness, feeling "fuzzy." I remember you having slow gastric emptying - Tramadol can worsen that.

The good news is over time you get used to them but the bad news is over time you get tolerant to opioids and need higher and higher doses. That is why doctors are now not using them for chronic conditions as much as possible.

I think another reason might be the opioid epidemic - doctors are now VERY hesitant to prescribe opioids, even mild ones like Tramadol. They want you to try everything else first.

Things you could try:
Switching anti-depressants - some anti-depressants work well for pain, including Fibromyalgia pain. Cymbalta is one.

Trying an anti-convulsant (might be allowed even with antidepressants - my daughter takes Gabapentin with an anti-depressant).

Trying injections into the joints that hurt - steroid injections. So for example, if you are having lower back pain, they may do facet joint or SI joint injections.

Trying another NSAID - I would also about the more gut friendly NSAIDs. Advil is NOT one of them. My daughter (who has a very sensitive stomach!) can tolerate 3 - Mobic, Celebrex and Relafen. She does need a PPI with them, but they work very well for rheumatic conditions.

I'm not anti-Tramadol at all, in fact I am pro-Tramadol for occasional use! I think it works well and for MOST it has few side effects. My older daughter takes it occasionally. I just think, unfortunately, with the opioid epidemic, you may have a hard time getting someone to prescribe it :(.

It is very frustrating to us too that patients who are responsible and really need pain relief are now suffering because it is getting harder and harder to get opioids. I have a daughter with very severe AS and significant joint damage and her quality of life would be a lot worse without them.

My younger daughter's rheumatologist told us at the first appt. that she NEVER prescribes opioids and you have to go to pain management for that. Often rheumatologists only take care of the disease - and they consider the pain that comes with it a pain management doctor's problem if it is not controlled by NSAIDs, DMARDs and biologics.

Another reason might be that you do not have a proper diagnosis yet, right? Currently they are just calling it a connective tissue disease which is vague. Your rheumatologist doesn't know what you have and until she does, she may be more hesitant to prescribe certain drugs. That is probably why she put you on Plaquenil - it works for some patients but it's a pretty mild drug. Probably the mildest DMARD she could have put you on.

The best treatment for fibromyalgia is actually exercise. There are plenty of studies that support that. I would try to get 30 minutes of aerobic exercise a day - it can make a huge difference. It doesn't have to be intense exercise - even walking counts.

Good luck!!
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I actually don't have gastroparesis - it was one of the things I was tested for but it came back normal. I have tried Cymbalta before a LONG time ago when it first came out for depression and I can't take it due to it causing extreme mood swings. I would lash out for no reason at all. I don't know about other antidepressants for pain control.

If there are other options that are milder than Tramadol, I'm all for giving them a try first, but I don't understand why my rheumatologist wants to keep me on the muscle relaxer when it is not for long-term use. I'm taking Norflex 100mg twice a day (I usually take it with the Plaquenil). It does work better for me than Flexeril without the extra tiredness. I will be calling the other rheumatologist I found tomorrow and see if I can get into see her. I would prefer someone closer anyway, so I hope she's good.

Yes, you are correct that I don't have a diagnosis of lupus yet. All my chart says is "autoimmune connective tissue disease" and that's what the Plaquenil is supposed to help.
 
There are others too - Effexor is one. Fetzima is similar to Savella which is actually approved for Fibromyalgia. Fetzima is an antidepressant.

Savella isn't an anti-depressant so it might be one to try. I don't know if it interacts with your other meds though.

Generally, the SNRIs are used for pain as well as depression. SSRIs did not do as well in trials for chronic pain.

I don't necessarily think other options are "milder" just that in this current climate, getting even Tramadol might be difficult. It is a mild opioid - it's given to kids with arthritis.

All muscle relaxants are meant to be used for a short time. However, my girls have been on Flexeril for years and it still works for them. One is on 5 mg and the other on 10 mg. They haven't had any issues stopping it - no withdrawal symptoms that you would get with opioids. They just stop.

The other issue with opioids is that they can actually cause more pain if used for a long time. This is called opioid induced hyperalgesia. They actually change your brain and nervous system and make you more sensitive to pain. They are not recommended for people with fibromyalgia for that reason - people with fibromyalagia have nerves that are more sensitive to pain anyway.

But if you use them only occasionally, then that should not be an issue. It's really long-term use that is the big problem.

The other things that could help - Voltaren gel, Lidocaine patches, a TENS unit, acupuncture and massage. My daughter has tried all of the above. Acupuncture did not help her, but everything else did, especially massage.

A second opinion is a good idea. You also could consider seeing a pain management doctor. Both my girls see one. If you do see one, remember to ask about serotonin syndrome because of your antidepressants. It can be very serious and is often forgotten by doctors.
 
Maya142 said:
There are others too - Effexor is one. Fetzima is similar to Savella which is actually approved for Fibromyalgia. Fetzima is an antidepressant.

Savella isn't an anti-depressant so it might be one to try. I don't know if it interacts with your other meds though.

Generally, the SNRIs are used for pain as well as depression. SSRIs did not do as well in trials for chronic pain.

I don't necessarily think other options are "milder" just that in this current climate, getting even Tramadol might be difficult. It is a mild opioid - it's given to kids with arthritis.

All muscle relaxants are meant to be used for a short time. However, my girls have been on Flexeril for years and it still works for them. One is on 5 mg and the other on 10 mg. They haven't had any issues stopping it - no withdrawal symptoms that you would get with opioids. They just stop.

The other issue with opioids is that they can actually cause more pain if used for a long time. This is called opioid induced hyperalgesia. They actually change your brain and nervous system and make you more sensitive to pain. They are not recommended for people with fibromyalgia for that reason - people with fibromyalagia have nerves that are more sensitive to pain anyway.

But if you use them only occasionally, then that should not be an issue. It's really long-term use that is the big problem.

The other things that could help - Voltaren gel, Lidocaine patches, a TENS unit, acupuncture and massage. My daughter has tried all of the above. Acupuncture did not help her, but everything else did, especially massage.

A second opinion is a good idea. You also could consider seeing a pain management doctor. Both my girls see one. If you do see one, remember to ask about serotonin syndrome because of your antidepressants. It can be very serious and is often forgotten by doctors.
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I have tried so many antidepressants, including Effexor, for my psychiatric issues and Effexor was one of the worst. I had weird vision changes and mood swings. I have not tried Savella, though, or Neurontin. My mom uses Neurontin for her neuropathy and it makes her very tired but doesn't really help with pain.

I'm actually hoping to get off one of my antidepressants because I don't think it's working. I've only been on it for a few months and my doctor has upped the dose to the maximum and I'm still having symptoms. I think I would rather try a mood stabilizer like Lamictal, which we have discussed, so hopefully, that will open up more options for pain control. Lamictal is sometimes used for pain control, so that might be a good add-on therapy. So many user reviews have said it has helped them with mood swings, so I hope I can receive benefit from it. I have to wait until my psychiatrist returns, though, from a family emergency. I was supposed to see her yesterday but the appointment was cancelled.

As for the other things you have mentioned, I have tried Biofreeze and Aspercreme with little to no results. The one thing that did help was Aspercreme Lidocaine Cream. The first time I used it was on a nasty hematoma I had from my first abdominal surgery. It decreased the pain significantly, so that was wonderful. I've used a TENS unit at the chiropractor I saw for a while and it didn't really help either. I have not tried acupuncture or massage, though.

I just tried to call the rheumatology office to get an appointment set up for a second opinion but no one is answering the phone so I left a message.
 
Lamoctil is not without its issues and many side-effects,
Some are serious
My daughter takes lamoctil for epilepsy, side effects being abdominal pain (some has been severe) back pain, insomnia, tremor, changes in appetite (hungry all the time). Mood swings (amuses me as it’s used for mood disorder)
Acne, rashes (some can be life threatening) these are the effects she has had.

Here is Cochrane review for lamoctil in pain management

http://www.cochrane.org/CD006044/SY...drug-chronic-neuropathic-pain-or-fibromyalgia

As for tramadol... it’s very addictive. The more you use, the less effective it becomes

I’ve lived with chronic pain (arthritis) for 24 years, and you do learn to live with it, I’ve never used any hardcore pain relief because I don’t like the side effects and I’ve always been aware of the issue with drug tolerance developing so it becomes useless

I do think pain management courses and clinic would be really helpful

I hope you find some relief soon
 
Lidocaine patches might help you them. A physician has to prescribe them (even your PCP could - it doesn't have to be your rheumatologist). My girls use them on joints that hurt. Voltaren gel is another option - it's an NSAID but since it's topical, it won't upset your gut.

I have heard Lamictal being used for pain, but anti-convulsants do tend to come with a lot of side effects. My daughter tried Trileptal, which is similar.

My kiddo uses Gabapentin for both sleep and pain. It definitely helps her sleep. Not sure on the pain part though. She takes it at night so it actually helps that it makes her sleepy.

It may be worth trying physical therapy since exercise is the number 1 recommendation for fibromyalgia and according to studies, works better than any medication. A physical therapist can recommend a TENS unit and get you a good one. He or she can also work on massage.

Often with chronic illnesses, we tend to do less when we're in pain. Then you get deconditioned, which causes more pain. That is why regular exercise is crucial as well as staying active as possible. A PT can help with that - help get you started.

My daughter even did an intensive pain rehab program which had 4-5 hours of PT/exercise a day! It REALLY helped her - more than any of the pain meds have. And she has tried a LOT of them.
 
Maya142 said:
Lidocaine patches might help you them. A physician has to prescribe them (even your PCP could - it doesn't have to be your rheumatologist). My girls use them on joints that hurt. Voltaren gel is another option - it's an NSAID but since it's topical, it won't upset your gut.

I have heard Lamictal being used for pain, but anti-convulsants do tend to come with a lot of side effects. My daughter tried Trileptal, which is similar.

My kiddo uses Gabapentin for both sleep and pain. It definitely helps her sleep. Not sure on the pain part though. She takes it at night so it actually helps that it makes her sleepy.

It may be worth trying physical therapy since exercise is the number 1 recommendation for fibromyalgia and according to studies, works better than any medication. A physical therapist can recommend a TENS unit and get you a good one. He or she can also work on massage.

Often with chronic illnesses, we tend to do less when we're in pain. Then you get deconditioned, which causes more pain. That is why regular exercise is crucial as well as staying active as possible. A PT can help with that - help get you started.

My daughter even did an intensive pain rehab program which had 4-5 hours of PT/exercise a day! It REALLY helped her - more than any of the pain meds have. And she has tried a LOT of them.
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Lidocaine patches are actually available OTC in the USA now. Aspercreme and Icy Hot both have them and I think Salonpas even makes a version now. :)

I did not hear back from the 2nd rheumatology office today so I'll try again tomorrow. I may look into pain management and/or physical therapy. I think I have to get a referral for PT, though, for my insurance. I had it once before for balance retraining therapy. I might also look into going back to the chiropractor again. I'm just kind of iffy about the chiropractor because it hurt for several days afterward. He has a massage therapist in his office, so I could ask about that, too. I know there are acupuncturists around here, too. A lot to think about. :)
 
Womble said:
Lamoctil is not without its issues and many side-effects,
Some are serious
My daughter takes lamoctil for epilepsy, side effects being abdominal pain (some has been severe) back pain, insomnia, tremor, changes in appetite (hungry all the time). Mood swings (amuses me as it’s used for mood disorder)
Acne, rashes (some can be life threatening) these are the effects she has had.

Here is Cochrane review for lamoctil in pain management

http://www.cochrane.org/CD006044/SY...drug-chronic-neuropathic-pain-or-fibromyalgia

As for tramadol... it’s very addictive. The more you use, the less effective it becomes

I’ve lived with chronic pain (arthritis) for 24 years, and you do learn to live with it, I’ve never used any hardcore pain relief because I don’t like the side effects and I’ve always been aware of the issue with drug tolerance developing so it becomes useless

I do think pain management courses and clinic would be really helpful

I hope you find some relief soon
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My intention was not to use Lamictal for pain control - I have a mental health condition and my psychiatrist and I have discussed the usage of mood stabilizers if my current treatment is not working. Unfortunately, I think it might be necessary because I'm still showing symptoms. I do not wish to discuss what I have, but I know Lamictal is often used for treating it as are other mood stabilizers. The condition is pretty difficult to treat, though, so mood stabilizers may not work or have limited results. Lamictal can help with pain control, but it's not often prescribed for that usage. Gabapentin is much more common, from what I've heard.

I've never been to a pain management specialist so I don't know if I need a referral for my insurance to approve it. I'll have to check my benefits book.
 
MissLeopard83 said:
My intention was not to use Lamictal for pain control - I have a mental health condition and my psychiatrist and I have discussed the usage of mood stabilizers if my current treatment is not working. Unfortunately, I think it might be necessary because I'm still showing symptoms. I do not wish to discuss what I have, but I know Lamictal is often used for treating it as are other mood stabilizers. The condition is pretty difficult to treat, though, so mood stabilizers may not work or have limited results. Lamictal can help with pain control, but it's not often prescribed for that usage. Gabapentin is much more common, from what I've heard.

I've never been to a pain management specialist so I don't know if I need a referral for my insurance to approve it. I'll have to check my benefits book.
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I forgot about your insurance with your job.
I understand you don’t want to discuss your condition, but I think I’ve got a pretty good idea.
I don’t know the success of lamoctil for the other conditions it treats other than epilepsy, but I do hope you find a medication that helps. Also when you’re in a job you really like and feel valued that may also make a world of difference for you.

Yeah gabapentin is often used here for pain.
 
Womble said:
I forgot about your insurance with your job.
I understand you don’t want to discuss your condition, but I think I’ve got a pretty good idea.
I don’t know the success of lamoctil for the other conditions it treats other than epilepsy, but I do hope you find a medication that helps. Also when you’re in a job you really like and feel valued that may also make a world of difference for you.

Yeah gabapentin is often used here for pain.
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I was able to continue with COBRA for at least a month because I have some very important doctors' appointments that I need to keep. It's very expensive, though, but worth it because I've already met my OOP maximum so everything is no-cost. :)

Thanks for the well wishes on the job search. It can be intimidating, but I know I'll find something worthwhile. I'm also preparing to return to school in the summer.
 
MissLeopard83 said:
I was able to continue with COBRA for at least a month because I have some very important doctors' appointments that I need to keep. It's very expensive, though, but worth it because I've already met my OOP maximum so everything is no-cost. :)

Thanks for the well wishes on the job search. It can be intimidating, but I know I'll find something worthwhile. I'm also preparing to return to school in the summer.
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Good wishes all around, MissLeopard
 
Lidocaine patches are actually available OTC in the USA now. Aspercreme and Icy Hot both have them and I think Salonpas even makes a version now.
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Thanks for the tip!! It seems like the OTC ones are 4% and also contain menthol. Ours are 5% and are just Lidocaine. So they are pretty similar.

The nice part is that insurance pays if you have a script. My older daughter uses them daily on her back and my younger daughter is starting to use them more often for her ankles, so it helps that they are covered by insurance. But good to know that they are also OTC in case we ever run out.

Good luck with Lamictal - it is prescribed for pain but mostly after you have failed the common meds - Gabapentin, Lyrica, Elavil, Nortriptyline, Cymbalta, Savella etc. My daughter tried Trileptal but it made her too "fuzzy" and VERY confused so she had to stop it. It did help her with sleep though.
 
Maya142 said:
Thanks for the tip!! It seems like the OTC ones are 4% and also contain menthol. Ours are 5% and are just Lidocaine. So they are pretty similar.

The nice part is that insurance pays if you have a script. My older daughter uses them daily on her back and my younger daughter is starting to use them more often for her ankles, so it helps that they are covered by insurance. But good to know that they are also OTC in case we ever run out.

Good luck with Lamictal - it is prescribed for pain but mostly after you have failed the common meds - Gabapentin, Lyrica, Elavil, Nortriptyline, Cymbalta, Savella etc. My daughter tried Trileptal but it made her too "fuzzy" and VERY confused so she had to stop it. It did help her with sleep though.
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You're welcome. If you want to stay away from menthol (I don't like it either), Aspercreme's version does not contain it as it is odor-free.

I had the same "fuzzy" feeling with Topamax that my neurologist prescribed for suspected vestibular migraines. Turns out, I don't have them anyway - I have cervical vertigo instead. I hate that fuzzy feeling so I hope it doesn't happen with Lamictal or any other medication I try. I already struggle thru brain fog thanks to fibromyalgia.
 
MissLeopard - since you’ve already reached your OOP max, you might as well get as many appointments as you can right now! I’d definitely get a second opinion. I can tell when a doctor has started to give up on me or doesn’t really care anymore. So that’s when I usually start looking for a new one. It’s frustrating that your doctor didn’t really give you many options; it sounds like she mostly just told you what she won’t give you. Now might also be a good time to try acupuncture and massage, if your insurance will cover it. This is a little more unconventional, but have you tried CBD oil? I’ve heard it works well for pain. And it’s something that you should be able to get even if marijuana isn’t legal in your state (it’s legal in mine now). I actually bought some CBD oil from a specialty pet store, which sounds totally weird hahaha. It didn’t end up really helping me, but pain is not my issue. Plus, they say it has no side effects (I didn’t have any, and I react to everything). I don’t know too much about fibromyalgia, so I’m sorry I can’t be of much help. I hope you can get a second opinion soon! I swear you could go to 10 doctors and get 10 completely different treatment plans. So you never know who might be the one to help you.
 
akgirl said:
MissLeopard - since you’ve already reached your OOP max, you might as well get as many appointments as you can right now! I’d definitely get a second opinion. I can tell when a doctor has started to give up on me or doesn’t really care anymore. So that’s when I usually start looking for a new one. It’s frustrating that your doctor didn’t really give you many options; it sounds like she mostly just told you what she won’t give you. Now might also be a good time to try acupuncture and massage, if your insurance will cover it. This is a little more unconventional, but have you tried CBD oil? I’ve heard it works well for pain. And it’s something that you should be able to get even if marijuana isn’t legal in your state (it’s legal in mine now). I actually bought some CBD oil from a specialty pet store, which sounds totally weird hahaha. It didn’t end up really helping me, but pain is not my issue. Plus, they say it has no side effects (I didn’t have any, and I react to everything). I don’t know too much about fibromyalgia, so I’m sorry I can’t be of much help. I hope you can get a second opinion soon! I swear you could go to 10 doctors and get 10 completely different treatment plans. So you never know who might be the one to help you.
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I bought some CBD oil from a health food store near me but it's so foul tasting that I've barely used it. I don't like coconut oil and it contains fractionated coconut oil and has a very bitter taste. I think I need to get some flavored stuff instead. :(

I still haven't heard from the 2nd rheumatology clinic so I'm not sure what's going on. I'm going to try calling one last time tomorrow.
 
I had the same "fuzzy" feeling with Topamax that my neurologist prescribed for suspected vestibular migraines. Turns out, I don't have them anyway - I have cervical vertigo instead. I hate that fuzzy feeling so I hope it doesn't happen with Lamictal or any other medication I try. I already struggle thru brain fog thanks to fibromyalgia.
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Fuzzy is how both my daughters describe Tramadol. They also say it makes them sleepy. Gabapentin causes "fuzziness" too. It seems like most of the meds we have tried that help with pain (and between the two girls, we have really tried most) do :(. They both hate it too.

If medical marijuana is legal in your state, my daughter's rheumatologist said it is likely to work better than CBD oil. Though she was talking about topical CBD oil, not the kind you ingest.
 
Hi everyone!

Just skimmed through the discussion on pain management and oh boy, it's a tricky one isn't it? The ones that work usually give you side effects and sometimes NOTHING works and you don't know what to do with yourself... Hope you figure something out.

Me, I'm home with the flu. Coughing hard and with a recently operated-on diaphragm that is... ouch.

Have a decent amount of good news for a change though; dryness has improved (could be because I'm full of flu mucous, who knows, but it's nice for now) AND I'm signing the contract for my BRAND NEW CONDO on Monday! :D So darn excited. Hopefully I'll be able to move in mid-April.
 
Izzie said:
Hi everyone!

Just skimmed through the discussion on pain management and oh boy, it's a tricky one isn't it? The ones that work usually give you side effects and sometimes NOTHING works and you don't know what to do with yourself... Hope you figure something out.

Me, I'm home with the flu. Coughing hard and with a recently operated-on diaphragm that is... ouch.

Have a decent amount of good news for a change though; dryness has improved (could be because I'm full of flu mucous, who knows, but it's nice for now) AND I'm signing the contract for my BRAND NEW CONDO on Monday! :D So darn excited. Hopefully I'll be able to move in mid-April.
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Congratulations on the dryness improving and on getting a condo. Take real good care of yourself. Hope you are better soon.
 
I hope everyone is doing okay, it's very quiet in here! I hope you all are behaving! (well not really..... because, I don't really like to behave :tongue: ) I have been working like crazy to push through my disability status. I'm finally getting somewhere, but there is still so far to go... oh well! I guess it's one step at a time. I just saw the doctor with papers Monday, now this coming Monday, more filling out papers with the doc. Soon we will probably be on a first name basis. I'll soon be an expert on the province of BC disability applications, that's for sure. LOL My best to all.:)
 
Hi everyone! Just checking in. I've been hanging out with my mom the last few days and I'm feeling much better - health-wise. I realized that one of my meds that had been increased in the last month was making me feel sedated and tired all the time so I talked to my doctor and she lowered the dose again (the higher dose wasn't helping, anyway; I felt no difference). Now, my energy is doing much better. My mom and I went to the zoo on Thursday and I wore my FitBit and did almost 8k steps! I was so proud of myself. I slept really good that night, too, from all the exercise and being out in the cool, fresh air.

Yesterday (Friday), we went shopping at TJ Maxx and had some fun. My legs and back were bothering me a little, though, because I stupidly wore my Minnetonka moccasins (which I love but they don't have enough support for walking over an hour). Still, we had fun together which made me feel good.

I'm having issues, however, with my insurance thru COBRA. The third-party administrator had an error on the website so my first payment didn't go thru and it showed me as "TERMINATED." As a result, my health insurance was made inactive and is taking forever to fix! I spent a long time on the phone yesterday trying to get answers about when it would be reactivated now that it shows "PAID" and didn't get much in the way of answers. I have a doctor's appointment next week that I've been waiting 3 months for (long waiting list) and I'm worried I may have to cancel it. I really need this appointment because I'm going back to school and I need to have documentation from a specialist for disability services since my old paperwork is over 4 years old. I'm hoping they will allow me to receive the testing and then bill my insurance when it is finally fixed, but I plan to call them Monday to hash out the details. Any prayers for a quick fix would be appreciated. My anxiety has been kicking my butt lately and I'm tired of worrying (so exhausting!).

Hope everyone is doing well!
 
MissLeopard83 said:
Hi everyone! Just checking in. I've been hanging out with my mom the last few days and I'm feeling much better - health-wise. I realized that one of my meds that had been increased in the last month was making me feel sedated and tired all the time so I talked to my doctor and she lowered the dose again (the higher dose wasn't helping, anyway; I felt no difference). Now, my energy is doing much better. My mom and I went to the zoo on Thursday and I wore my FitBit and did almost 8k steps! I was so proud of myself. I slept really good that night, too, from all the exercise and being out in the cool, fresh air.

Yesterday (Friday), we went shopping at TJ Maxx and had some fun. My legs and back were bothering me a little, though, because I stupidly wore my Minnetonka moccasins (which I love but they don't have enough support for walking over an hour). Still, we had fun together which made me feel good.

I'm having issues, however, with my insurance thru COBRA. The third-party administrator had an error on the website so my first payment didn't go thru and it showed me as "TERMINATED." As a result, my health insurance was made inactive and is taking forever to fix! I spent a long time on the phone yesterday trying to get answers about when it would be reactivated now that it shows "PAID" and didn't get much in the way of answers. I have a doctor's appointment next week that I've been waiting 3 months for (long waiting list) and I'm worried I may have to cancel it. I really need this appointment because I'm going back to school and I need to have documentation from a specialist for disability services since my old paperwork is over 4 years old. I'm hoping they will allow me to receive the testing and then bill my insurance when it is finally fixed, but I plan to call them Monday to hash out the details. Any prayers for a quick fix would be appreciated. My anxiety has been kicking my butt lately and I'm tired of worrying (so exhausting!).

Hope everyone is doing well!
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Prayers for you.
 
Hi everyone! Checking in, hope everyone's okay. Not jealous of those of you dealing with disability and insurance - it can be so tricky.

My physical state rapidly declined again after I had the flu and all my dryness symptoms came back with a vengeance. Very frustrated and upset. My GP is chalking it all up to stress when really the only thing stressing me out in life right now is that no one will help me out with my physical symptoms... He's not a good doctor and I'm going to try to find a new one.

Tomorrow I'm having my post-surgery EGD, under anaesthesia. After a number of failed scopes with sedation only they've opted to just put me under right away this time to not waste my time or their resources on things that don't work 75% of the time anyway. A little nervous to be put under again, it's never fun, but it's necessary so I'm just pushing through. Might be having a BRAVO pH study if they do see reflux damage at all tomorrow, if they do they will place the capsule to see how bad the remaining reflux is. I'm hoping not, I'm not keen on any more discomfort than I'm already dealing with.

The dryness is so intensely uncomfortable and disturbing and I don't really have any doctor helping me with it at all right now. I am seeing an optician on Tuesday since the dry eyes have started impacting my vision. Hopefully I will get some "proof" there that something is indeed wrong. A week from tomorrow I have an appointment with an ENT to check my salivary gland function. A week from that an eye specialist who commonly deals with patients who have Sjogren's - so he'll be able to refer me to a rheumatologist if he thinks my symptoms are consistent with that. So a lot is happening within a few weeks of now but I am very frustrated with the slow pace and also honestly sometimes with the quality of the care I am receiving (or not receiving as the case has often been...)

Have started considering seeking a second opinion at one of the major medical centers in the US. From the research I've done I'd be able to get all necessary testing done at some places there within a few weeks' time whereas where I am now I'm waiting approximately 3 months between doctor's appointments that are usually 5 minutes long and where the doctors are dismissive, rude, and ineffective.

I feel I am too young to waste months (years, really) of my life on dealing with ineffectual health care when it's possible that the problem could be treated or even completely resolved if someone with real skill took the time to really investigate what is going on...
 
Izzie said:
Hi everyone! Checking in, hope everyone's okay. Not jealous of those of you dealing with disability and insurance - it can be so tricky.

My physical state rapidly declined again after I had the flu and all my dryness symptoms came back with a vengeance. Very frustrated and upset. My GP is chalking it all up to stress when really the only thing stressing me out in life right now is that no one will help me out with my physical symptoms... He's not a good doctor and I'm going to try to find a new one.

Tomorrow I'm having my post-surgery EGD, under anaesthesia. After a number of failed scopes with sedation only they've opted to just put me under right away this time to not waste my time or their resources on things that don't work 75% of the time anyway. A little nervous to be put under again, it's never fun, but it's necessary so I'm just pushing through. Might be having a BRAVO pH study if they do see reflux damage at all tomorrow, if they do they will place the capsule to see how bad the remaining reflux is. I'm hoping not, I'm not keen on any more discomfort than I'm already dealing with.

The dryness is so intensely uncomfortable and disturbing and I don't really have any doctor helping me with it at all right now. I am seeing an optician on Tuesday since the dry eyes have started impacting my vision. Hopefully I will get some "proof" there that something is indeed wrong. A week from tomorrow I have an appointment with an ENT to check my salivary gland function. A week from that an eye specialist who commonly deals with patients who have Sjogren's - so he'll be able to refer me to a rheumatologist if he thinks my symptoms are consistent with that. So a lot is happening within a few weeks of now but I am very frustrated with the slow pace and also honestly sometimes with the quality of the care I am receiving (or not receiving as the case has often been...)

Have started considering seeking a second opinion at one of the major medical centers in the US. From the research I've done I'd be able to get all necessary testing done at some places there within a few weeks' time whereas where I am now I'm waiting approximately 3 months between doctor's appointments that are usually 5 minutes long and where the doctors are dismissive, rude, and ineffective.

I feel I am too young to waste months (years, really) of my life on dealing with ineffectual health care when it's possible that the problem could be treated or even completely resolved if someone with real skill took the time to really investigate what is going on...
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I hope you can start to feel better soon.
 
Hey Izzie,

I'm glad you are switching doctors and going to a better facility. Life is too short, we need to make moves, or nobody else will! Good for you, I know what it's like dealing with the wrong medical team... not cool! I really hope this is what is meant to happen and you will soon be enjoying life more, you deserve better.


Cheers,

Chris
 
cmack said:
Hey Izzie,

I'm glad you are switching doctors and going to a better facility. Life is too short, we need to make moves, or nobody else will! Good for you, I know what it's like dealing with the wrong medical team... not cool! I really hope this is what is meant to happen and you will soon be enjoying life more, you deserve better.


Cheers,

Chris
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Thank you! I agree that it's about time, I've been unhappy with the state of things for a while now but I'm generally an agreeable person and don't like to make a fuss over myself, so I've put off making complaints or switching providers... Big mistake :p It seems very unnecessary that what is hopefully a very treatable condition is being ignored for months and months, causing unnecessary suffering and driving me freaking crazy :lol2:

I swear, I'm actually a sane person normally :ylol: Just being driven to madness by ineffective health care systems and uninterested physicians who'd rather twiddle their thumbs than do their jobs.
 
Hi Izzie:

Just wondering how the scope went. I was so hopeful after you reported that the dryness was better. I’m sorry it returned and so badly. I found the following article when I was thinking about what’s going on with you and thought it might help.

http://info.sjogrens.org/conquering-sjogrens/bid/353580/Sjogren-s-Vs-Sicca-Syndrome

From a quick read it seems that it can take years to get Sjogren’s diagnosed (sounds like a lot of these autoimmune diseases). I’m also sorry you have to find a new GP. I had to switch five years ago or so (my GP moved) and I don’t have as good a relationship with my new one. It can be frustrating. I’m hoping the scope went fine and that you’re not too tired from the anesthesia.
 
Scope was cancelled because for some reason I ended up in the ER; had the dryness of course but on top of it developed an allergic reaction to something (no idea what) and they had to treat me for potential anaphylaxis, got lots of cortisone and stayed for observation for a few hours. So no scope, and I was told that it will take 2-3 months for a new appointment.

Dryness is record horrible. I had some slight hope that the cortisone for the allergy would knock it out because that happened once before with this but that has not happened yet at least. I can no longer blink right because my eyelids stick to my eyeballs they're so dry. I do blink kind of, but not normally and it often sticks and hurts and burns. Have an appointment with an optician for "tear analysis" tomorrow, will see what results that yields.

Have been up tonight with weird tachycardia of unknown cause. Was given loads of cortisone so maybe it's that. Still have esophageal pain daily so I'm really really bummed that the scope had to be cancelled and that rescheduling will take so long.

Thank you for the link, Jabee, you've always been such a great resource and giver of good advice, I really appreciate that!

Sjogren's confuses me as I don't necessarily think I have any symptoms of it despite dryness, so that article is enlightening.

The going is tough, as they say, but I'm trying to push through. Your support and even completely unrelated conversation on here really does help a ton and I appreciate every one of you.
 
Update: Optician saw severe dryness and already visible damage to my eyes. The white part had scar tissue, and there was some mild corneal damage in one eye as well. She said I am at a risk for vision loss and this is NOT normal and she believes I must have an illness for this to become so severe in such a short period of time.

I'm very upset by this but also feel validated. She printed out her evaluation for me to bring to my GP as "proof" that this is not stress and I'm not making anything up.

I can't imagine losing my vision... She did give me ointments and drops and everything to try to help halt the damage. But if you don't get at the cause, it's not going to end well.
 
Izzie said:
Update: Optician saw severe dryness and already visible damage to my eyes. The white part had scar tissue, and there was some mild corneal damage in one eye as well. She said I am at a risk for vision loss and this is NOT normal and she believes I must have an illness for this to become so severe in such a short period of time.

I'm very upset by this but also feel validated. She printed out her evaluation for me to bring to my GP as "proof" that this is not stress and I'm not making anything up.

I can't imagine losing my vision... She did give me ointments and drops and everything to try to help halt the damage. But if you don't get at the cause, it's not going to end well.
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Sending prayers your way.
 
Good grief, Izzie. It’s a sad day when you have to offer proof you are sick to your own doctor, GP or specialist alike. I am so sorry your eyes have already been damaged by this severe dryness. Will your GP be willing to prescribe for Sjogren’s just to see if an immunosuppressant will help? I believe Plaquenil and methotrexate are used for Sjogren’s. You clearly need treatment to help prevent the dryness, not just ease the symptoms. Do you have an appointment to see your GP, or an endocrinologist, or an immunologist? I hope your eyes at least begin to feel better. I have double vision and at times vision issues stemming from chronic migraines, but no real physical damage. What you have is very distressing. Please try to take it easy.
 
Jabee said:
Good grief, Izzie. It’s a sad day when you have to offer proof you are sick to your own doctor, GP or specialist alike. I am so sorry your eyes have already been damaged by this severe dryness. Will your GP be willing to prescribe for Sjogren’s just to see if an immunosuppressant will help? I believe Plaquenil and methotrexate are used for Sjogren’s. You clearly need treatment to help prevent the dryness, not just ease the symptoms. Do you have an appointment to see your GP, or an endocrinologist, or an immunologist? I hope your eyes at least begin to feel better. I have double vision and at times vision issues stemming from chronic migraines, but no real physical damage. What you have is very distressing. Please try to take it easy.
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I have three appointments coming up. ENT in a week, phone call with the GP the day after, and then an opthalmologist another week after that. I think any of them should be able to refer me to a rheumatologist. I doubt my GP will prescribe anything, he's a horrible person :p And I'm still looking to make a switch honestly it's just since I'm moving soon anyway I want to try to wait until then, it's only about 3 weeks from now. If the ENT sees abnormal dryness as well then I will have a lot of reasons why my GP should refer me so I'm hoping he'll see reason. If not, I think I'll demand a second opinion from one of the other doctors at his office before I move...

I got a lot of treatment stuff from the optician. Ointments and heat masks and gel drops and all maner of concoctions. I hope they at least help halt the rapid pace at which I am getting damage, and hopefully will help the discomfort with continued use for a while.

She also told me actually that the three main causes she sees for issues as severe as mine is Sjogren's, going on new medication, or STOPPING a medication - which I have recently done. It was when I started messing with my dosage of PPIs after surgery that this started. And before, this has happened twice when I've changed brands or gone on a new PPI. Of course, those times it actually went away after a week or two at most and now it's been two MONTHS. So who knows. I at least have some hope that it might just go away.
 
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
 
My best to you Izzie. I'm glad at least that someone finally noticed what was going on. I really hope the drops prevent further damage in the short term, I'm praying for a good outcome for you.
 
Maya142 said:
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
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I've had joint pain since I was a child, and I still do, but it hasn't gotten worse (or better). No swelling or stiffness really. I also have NO fatigue or any issues like that which seems strange if I have autoimmune disease but I guess it's possible. I've been trying to get a hold of Biotene here but I can't seem to find it. The stuff I've found here has been pretty useless. Maybe I could make an international order :D

That's a good idea with the dentist, thanks! I'll make sure to go see my dentist when I can.
 
I saw my psychiatrist on Monday after my insurance was finally reinstated on Friday (she had a cancellation, YAY!). We talked about my worsening mood swings and she agreed to let me try a mood stabilizer as we had discussed in the past. I've agreed to try low dose Seroquel (regular strength, not XR) since Lamictal is contraindicated in people with autoimmune disorders due to risks of agranulocytosis and/or aseptic meningitis. The only thing is that my pharmacy flagged it since there is a potential interaction with the antidepressant I'm on but my doctor and I agree the benefits outweight the risks and I'm waiting for the medication to be pushed thru so I can start it. Hopefully, it will be filled today (Wednesday). My insomnia has been particularly bad lately and she said taking the Seroquel at night will probably help me sleep.
 
MissLeopard - I hope the medication works for you! Not being able to sleep really worsens any issue you have; physical and mental alike.

As for what's new for me, well... I yelled at my GP :p And he actually listened, so that was good. Eye doctor on Monday, dentist is going to test my saliva, having new bloodwork etc.

This dryness stuff is strange though. My dry mouth has definitely gotten better since I went off the PPIs but then it plateaued at this level where it's... okay, but definitely not normal. My eyes have gone downhill consistently for the past few weeks until yesterday when they suddenly felt normal. Today they're bad again. Everyone has a different theory. GP and surgeon think Sjogren's (or just stress, which it clearly is not...), ENT thinks it's still a lingering medication reaction, or allergies which he tested for.

A medical mystery, that's me :p

We're having lovely sunny (but cold) weather here the past few days. I'm taking advantage of it and visiting family in the middle of the week, as you can do when you're on sick leave.
 
Sorry I haven't been around much but I have been reading to keep up with how everyone is doing :)

MissLeopard I hope the new medication helps and you're able to get some sleep soon, sleep deprivation really does make everything so much harder doesn't it.

Izzie I'm glad you're finally getting listened to by the various medical professionals but I'm sorry it's come to that with your eyes. I hope they can figure it out before the damage causes vision loss. Well done for standing up to your GP, I know how hard that is!
 
I'm so sorry there are so many others here that are still undiagnosed. I just found this part of the forum and will make sure to check in once in awhile.

My short story:

I've been dealing with severe stomach cramping, frequent diarrhea, 3-5 bm's a day that are soft and sticky when not diarrhea, mouth sores and a perianal fistula. I've had most of these symptoms most of my life. When I was 20 I had a colonoscopy and nothing was found. I am now 32 and had another colonoscopy about a month after my fistula surgery and again nothing was found. I am now waiting on results from blood tests and breath tests.

There is a family history of Crohn's as well as diverticulitis and one of my great-aunts has also been struggling to get a diagnosis for her digestive issues as well (they told her she had Crohn's for about a year but are now saying it's not Crohn's).

I hope everyone is able to get answers soon!!
 
I haven’t written (or read) in a while.....I broke my phone so I was a little disconnected from the world. But now it’s mostly working again, and I was able to catch up.

Izzie - What in the world is going on with you? It makes me so mad that your doctor has said that your symptoms are from stress. That literally doesn’t make any sense at all. I’ve never heard of anyone having those types of symptoms because of stress. But as most of us know, doctors typically use that as a cop out when they don’t want to admit that they don’t know what’s going on. I’m glad that it sounds like some people actually see that there’s something going on with you, so hopefully that means they’ll figure it out soon. It really sucks that your scope had to be rescheduled. You’d think they’d figure out a way to squeeze you in sooner. But at least you can look forward to moving into your condo soon! We need to create our own Facebook group so you can post pictures of it. :) Well if you don’t suck at technology like I do, then you could probably figure out how to post pictures on here. You’d think as a “millennial” I’d be better at technology. But I had a broken phone for weeks, and it’d still be broken if it weren’t for my husband. Keep us posted on how your appointments go.

I don’t really have much to report on me. I’ve been extra dizzy and lightheaded lately. Like every time I stand up I end up needing to hold onto something to steady myself. I’m guessing it’s from the meds I’m taking. My doctor did mention that I needed to make sure to replenish my electrolytes. So I’m trying to do that more now, and we’ll see if it helps. I don’t know about you guys, but I’m so ready for Spring! I planted some seeds (inside) a couple weeks ago, and it’s been so sunny lately. Now if the snow would just hurry up and melt....
 
Maya142 said:
Izzie, I would ask for a rheumatology referral right away.

Do you have any joint symptoms - pain, swelling, stiffness?

It does sound like it could be Sjogrens. I know they definitely use Plaquenil and MTX for it, like Jabee said and when it's severe, Rituxan (which is an infusion).

I am sure you've tried this, but for dry mouth we have a mouthwash called Biotene in the US that is OTC. My daughter has been on medications that cause dry mouth for years and has been using that.

You also need to be followed by a dentist, because you get more cavities with dryness.
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My sister has Rheumatoid Arthritis, Sjogrens, Lupus.....and bad teeth. Biotene is useful.
 
Hi everyone! Hope everyone had a pleasant Easter. It was a regular day for me yesterday, unfortunately, as both my mom and I were laid up feeling ill. My pain is worsening. Saturday night, I had swollen, sore fingers on my left hand. The knuckles were very sore and I don't know if it's autoimmune related or fibro-related. I didn't do anything to injure them. I have an appointment with my rheumy tomorrow but I'm not optimistic - she seems like she wants to stuff me with muscle relaxers instead of trying anything else and they don't work very well. I found another rheumy right down the street from me that I may see for a 2nd opinion since I never did hear back from the other one I found. We'll see how tomorrow goes.

Also, the Seroquel is working very well but I need to switch antidepressants. I am on Celexa and it's not helping but it's making me gain a TON of weight. I've gained 20 lbs which is a known side effect of Celexa. Seroquel hasn't increased my appetite, thankfully. I'm planning to ask my psychiatrist to switch me to Pristiq or Effexor since we've discussed this and they do not cause weight gain and may actually help with chronic pain (my mom is on Effexor for pain and said it has really helped her).

Also, I'm looking into getting a gym membership so I can take water aerobics since that is really good on the joints. I want to get back into swimming, too. :)
 
MissLeopard83 said:
I saw my psychiatrist on Monday after my insurance was finally reinstated on Friday (she had a cancellation, YAY!). We talked about my worsening mood swings and she agreed to let me try a mood stabilizer as we had discussed in the past. I've agreed to try low dose Seroquel (regular strength, not XR) since Lamictal is contraindicated in people with autoimmune disorders due to risks of agranulocytosis and/or aseptic meningitis. The only thing is that my pharmacy flagged it since there is a potential interaction with the antidepressant I'm on but my doctor and I agree the benefits outweight the risks and I'm waiting for the medication to be pushed thru so I can start it. Hopefully, it will be filled today (Wednesday). My insomnia has been particularly bad lately and she said taking the Seroquel at night will probably help me sleep.
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I take Seroquel every evening. I have taken it for years. My current dose is not super high but I still do not sleep well. If I take a larger dose then I get brain fog the next day and wouldn't even drive in the mornings. I don't want to be in a brain fog all the time, I want to be coherent.

You mentioned Lamictal, which I have been taking a long time too. Thank you for sharing your information about it, no one ever said anything to me about Lamictal and autoimmune disorders.

Wishing you well.

Lynda
 
Lynda Lynda said:
I take Seroquel every evening. I have taken it for years. My current dose is not super high but I still do not sleep well. If I take a larger dose then I get brain fog the next day and wouldn't even drive in the mornings. I don't want to be in a brain fog all the time, I want to be coherent.

You mentioned Lamictal, which I have been taking a long time too. Thank you for sharing your information about it, no one ever said anything to me about Lamictal and autoimmune disorders.

Wishing you well.

Lynda
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I noticed the Seroquel isn't particularly helpful when it comes to the insomnia as far as getting to sleep earlier. I noticed, however, that the quality of sleep is better because I'm sleeping deeper and not tossing and turning like usual. A side effect of that, though, is that I wind up waking up in pain because I've been laying on the same side too long. It's not too bad, though, and usually calms down after a while.

Yeah, I was surprised about the Lamictal, too. She said it wouldn't cause weight gain like the Seroquel could but she did not want to start me on it before consulting with my rheumatologist. Apparently, the potential for low WBC is pretty high which can be harmful for AI disorders.
 
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
 
Izzie said:
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
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I hope you can get a scope soon and get some answers
 
Izzie said:
Hi everyone! Hope you're all well.

Nothing much has happened on my end. Still waiting for a scope, still waiting for some doctor to give a crap. Had a saliva test that was very abnormal, that's about it. Still dry everywhere, comes and goes in a weird way unrelated to anything else. Oh and my reflux is back. "Fun"... It's back full force, like I never even had surgery to begin with. I don't have stabbing chest pain or uncontrollable belching like I used to but other than that I feel exactly the same. Constant, unbearable burning in the chest and throat. Can't tolerate many foods at all.

At least I got the keys to my new place. Doing some painting this week and hopefully I'll be able to move in in another week or so. I love it, it's so sunny and bright! My current place is a depressing bat cave in comparison :p
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Have you been tested for hypochlorhydria (aka low stomach acid)? The odd thing about reflux is that most people are under the impression that their stomach is producing too much acid, when really, the stomach is not producing enough. If you have Sjogren's syndrome, that could cause low stomach acid, as well. Just a thought. You could try taking betaine HCL as a supplement and see if that helps resolve your symptoms.
 
Hello fellow undiagnosed's :) must admit I just had to come on here for a bit of a whinge, I apologise in advance. I've had a gradual re-introduction of symptoms, and now getting bad stomach pain on and off this last week. It's frustrating because I believe I would have been on an oral mesalazine for maintenance after my initial suppositories, which worked very well, but due to the disruptive weather I had to cancel my appointment last month, which got moved all the way back to July, after ringing to say my symptoms are returning it's been moved forward again and I'm waiting till next week now.

I've skipped lunch in the hope it might ease up the pain and I'm just trying to drink plenty of water, no caffiene, no carbonated drinks (which I don't anyway to be honest, just gluten-free beer some evenings). The pains had been coming and going previously but today I seem to be in constant stomach pain, wish I could fast forward time and see the GI already!
 
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 :)
 
sarahfh, how are you doing? Did they place a GJ or a J tube yet? I have been meaning to message you!
 
Maya142 said:
sarahfh, how are you doing? Did they place a GJ or a J tube yet? I have been meaning to message you!
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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!
Recovery hasn't been too bad either, I was in hospital one night then home taking it easy. I did have to take tramadol regularly and I'm just starting to wean off that now there is no pain from the infection. I tried to stop as only been on it at a small dose (50mg twice a day) but I went into withdrawal already so I have to wean instead. That's pretty frustrating I didn't expect within a few weeks my body would become dependant on it!
Not managing as much liquid orally but suspect that's related to the tramadol slowing things down further so hoping that will come back a bit over the coming weeks.
But otherwise all is going well! How are you and the girls?
 
sarahfh said:
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 :)
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This is true. I waited out a terrible heartburn/ reflux situation the other evening. Finally had a major bowel movement and the heartburn / reflux toned down.
 
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!
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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.
 
sarahfh said:
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 :)
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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.
 
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.
 
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?
 
Maya142 said:
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?
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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. :)
 
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. ;)
 
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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?
 
MissLeopard83 said:
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.
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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:
 
Maya142 said:
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?
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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. :)
 
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Lynda Lynda said:
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:
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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. :(
 
Maya142 said:
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?
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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. :)
 
MissLeopard83 said:
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. :)
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MissLeopard, I am glad things have really calmed down for you.
 
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?
 
Maya142 said:
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?
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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.
 
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.
 
Maya142 said:
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.
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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.
 
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!!!
 
Maya142 said:
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!!!
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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. :)
 
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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.
 
cmack said:
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.
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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! :)
 
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.
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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!
 
Maya142 said:
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!
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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. :)
 
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.
 
Maya142 said:
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.
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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. :)
 
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.
 
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.
 
Izzie said:
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.
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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!
 
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.
 
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.
 
Maya142 said:
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.
Click to expand...

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.
 
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.
 

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