WLS with Fibromyalgia and Arthritis of Unknown Origin

[theantichick 2,204]

The "arthritis of unknown origin" is a common bucket to toss those of us without specific blood markers in until another symptom or test points the way.

I went through years of my doc telling me that it was depression, putting me on anti-depressants, and eventually an anti-psychotic (sounds worse than it is... they've found that some of the atypical anti-psychotics help with untractable depression when added to an anti-d) and eventually she just put down "arthralgia" which is the $15 medical term for joint pain. I insisted on getting referred out to a rheumatologist after steroids took my pain level down from a 6-7 to a 1.

Rheumatologist couldn't find any specific blood markers, and eventually after finally seeing some joint swelling after 3 months off of steroids (ouch) diagnosed me with non-serologic RA. Prescription NSAIDs failed, methotrexate failed, and I had partial success with sulfasalazine. Then I sent my daughter in to my rheumy, and she has been diagnosed with non-radiologic SpA (spondylarthropies) because the rheumy right now can't differentiate between psoriatic arthritis and ankylosing spondylitis (kiddo's dad has AS, she has the gene for both PsA and AS) so she's about to start the medication train to try and get her some relief. After seeing my daughter, rheumy looked more closely at my nails and found pitting (pitting is a sign of PsA, kiddo has it but she also has alopecia which can cause pitting) and then went back to my original worst pain which is these knots in my feet. She had originally said it wasn't related, but now with the pitting decided I have PsA, even though I've never had the skin symptoms.

So she says I need to move straight to biologics, and that's when I asked about VSG. She was very excited about it for me, because apparently some of the hormones that directly affect PsA are altered by the removal of most of the stomach. And, fat cells secrete lots of estrogen which is part of the inflammatory factor. So we're putting off biologics while I get the surgery, and will start as soon as I'm recovered.

[gowalking 10,790]

@@theantichick

Thanks for that info. I know I'm playing a dangerous 'game' between the NSAIDS and steroids. Without them, though...the pain impacts me so badly. I'm not so worried about right now, but what about ten or 20 years from now? That's what scares me.

[theantichick 2,204]

Yeah, the long term effects of steroids are serious. NSAIDs don't have a lot of long term issues, except a slightly higher tendency to ulcers for some, and at high enough dosages kidney issues. But I know when I was hurting bad, and got relief from steroids, I didn't care about the long-term effects. I wanted to quit hurting so I could work (I was an ER nurse at the time) and move without hurting. It's a long slog getting a diagnosis and moving on to drugs that can help and prevent joint damage. Keep at the docs until they give you an answer.

[Jilly69 13]

Hi Jen: Are you seeing a Rheumatologist? If not you might want to consult one to help with a diagnosis. I went to doctors or 14 years, most of them told me that my symptoms were all in my head. It wasn't till I sat down one day and wrote down everything I though was a symptom and when I was done I had 2 sides of a piece of paper. I went and saw a new Rhematologist and gave him the paper with the symptoms, he spent an hour and a half with me going over everything and then sent me for a million x-rays and tons of blood work and some other tests. He had told me he thought I had reactive arthritis. I went home and looked it up and thought hum, that doesn't sound too bad. When he got my results he told me I have Ankylosing Spondylitis! I said what the HELL is that I can't even pronounce that. It is also a form of arthritis and is an autoimmune disease with no known cure. I also have a secondary diagnosis of rheumatoid arthritis , along with Fibromyalgia. He is constantly testing me though for Lupus, that's what they thought I might have in the beginning, but it is hard to diagnos. Don't give up on a diagnosis, only you know your body and you need to keep pressing the doctors for a diagnosis, not just arthritis of unknown origin. I am pre-op right now, but will be getting sleeved in July. My doctors say it should help with some of the issues I have. Also when you have one autoimmune disease, it is possible to have more than one of them. I hope you get a clear diagnosis in the near future it will help put your mind at ease when you have a name to what is causing you so much troiuble. Sorry for the long post....Jill

Hi Jill. I'm at that 'arthritis of unknown origin' point. Have been for a few years now. The rheumatologist has tested me over and over and keeps an eye on my inflammatory markers. I take anti-inflammatory meds and methotrexate with folic acid. What are you prescribed now that you have a definitive diagnosis? I'm really curious to know as this chronic illness and the pain that goes along with it is draining at times...especially now that I'm in a flare and back on steroids.

Hi gowalking: In regards to what I am prescribed now that I have a diagnosis, I have been on several things. I started out with methotrexate and he wanted me to take prednisone too but I told him no because of all the side effects especially weight gain with that. I only took methotrexate for a couple of months I didn't see any difference on that other than my hair breaking off. Next he had me try Emberel, that made my pain a 100 times worse and he wanted me to keep taking it for 6 months. After the 2nd month I had to stop, the pain from that was too intense. Then he had me try Humira, luckinly they gave it to me in his office the first time because within about 30 seconds after they gave it to me I started pouring down sweat, got extremely nauseous and my scalp was on fire. I was literally drenched within seconds, it was actually quite scary! No more bioligics for me n though he wanted me to try remicade to, but I said no after trying the other 2. He them had me try sulfazine, that killed my stomach and I couldn't kep taking that either. So now I am on arava, generic is leflunomide which is to help keep inflammation down. I also take hydrocodone, flexeril and some other pain meds as needed. I hate taking medicine and told my doctors I want to manage my health conditions with the least amount of meds a possible. I have been through some severe flares and I have to just tough through them as best I can. I try my best to keep my stress level down which is hard to do. if my doctor brings up any medicine that one of the first side effects is weight gain, I tell him don't even bother talking to me about it, that it cant be good for my joints to gain weight. In the beginning when he was changing so mch medicine I did gain like 30 pounds, I was so mad. I have also lost 2 inches in height in 3 years already, used to be 5' 10, now 5'8, not too happy about that either. Anytime some new symptom comes up I try to talk to him about it at the next apt, because I still think there are other things brewing. My problem is I don't know of anyone in my family that has anything like this, so I have no one to talk to about it, because they don't really understand the anything I go through on a daily basis. I think the worst thing for me is the fatigue that it causes. I work a lot and the fatigue really gets in the way. its nice to know that there are others out there that have similar things and we can all learn a little form each other....Jill

[gowalking 10,790]

Oh Jill...sounds awful. Like he was thinking you were an experiment and let's see what else we can throw at her. I'm sure the methotrexate isn't doing anything for me. I have an appointment with the rheumatologist next week and I think I'm going to tell him I want off. I was doing very well on 60 mgs. of Cymbalta but the side effect of loss of libido was unacceptable to me. We tried Lyrica but I got nervous over the weight gain side effect so I stayed on it a short time and went off. So here I am again, on steroids. My family sort of understands especially with my mom going through very similar issues. Of course, I understand exactly what she's going through. Thanks for sharing. Liz.

[JenniferVSG2011 16]

I am sorry that it has taken so long for me to update everyone. One month ago I was finally diagnosed with SLE (lupus), and also have the fibromyalgia cross over.

I have continued to gain weight. I am now up to a 25 lb weight gain, not matter how much I cut carbs, and raise my Protein intake. I am extremely depressed not just because of the weight gain, but also because of the diagnosis. It is really imperative that I lose weight. I have begun trying to be more active, but no change on the scale.

I am now considering revision surgery from the gastric sleeve to RNY. I don't know what else to do at this point. I know that it can cause many complications. I am not sure if there is any other procedure that might help, but am trying to contact my original surgeon, as well as some of the best surgeons in my area.

Looking for any advice that you ladies might have. I really would appreciate your feedback.

Thanks so much,

Jennifer

[gowalking 10,790]

Hi Jennifer. I really have no advice as I've not been through your experience but I can say as a fellow weight loss patient, I would so talk to my surgeon to get his/her input on why you are putting the weight back on. I would also speak to your primary care doctor and let him or her know about your depression. It sounds situational to me and having had situational depression, I can attest that anti-depressants short term helped me quite alot. They're not happy pills, they just help you to focus better on your life and what you need to do rather than get stuck in the depression.

Please keep us posted on what you do. Not only do I care, I find that any vet can enlighten me in one way or another as to what might happen to me in the future. I find that invaluable as I go through my maintenance phase....which I expect to last my whole life.

Liz

[Uniqbtrfly 27]

I too have fibro amd the meds they gave me contributed to my weight gain and itol my rheumy i refuse to take them. She gives me nembutone 500 mg 2x day and my primary doc gives me tramadol 50 mg 2xa day.....it works for me and i do hate the flares! I also have positive ANA. I suffered with manic depression for many years and took many different antidepressants to finally arrive at prozac which i took a long time...it quit working so i was on nothing. 2 yrs post sleeve i was diagnosed with bipolar type 2...i think there are 4 types. It is mostly inherited. It took me a yr of therapy and different mood levelers and antidepressants to find my cocktail that works for me and also to embrace it. I also have anxiety and insomnia...which goes along with it all. I am now back on the prozac, which is working along with depokote. I take the smallest dose of valium at bedtime for sleep and anxiety....that is what works for me. Now I only have to see my psych doc every 3 months for refills and follow ups. There is no cure and i do have some bad days when my mind gets stuck. But i no longer fight it cause that only makes it worse....i know as long as i take my meds it does not last very long. I hope you find what works for you. All the regular docs i went to in the past never mentioned i might need a mood leveler to go with my antidepressant. It took seeing a psychiatrist for my proper diagnoses. After hearing my history and family background...he hit the nail on the head. I am so grateful now. I look at it almost as a gift because it answered many questions about my self and my past. So if I had not had my sleeve and had not lost the weight at that time that I had...I don't think I would have the emotional healing that I have today. Awareness is key and you know your own body....and the stigma of mental illness is way outdated. It is by far nothing to be ashamed of....not saying anyone here is....I just will be glad when it is accepted like any disease that can actually e seen....as to look at me you would not know I am disabled.

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Edited August 14, 2016 by Uniqbtrfly

[Butterflywarrior 241]

These posts are so for me. I'm 39, about to get sleeved next month and my biggest worry are my mystery autoimmune diseases and fibromyalgia. I have sooo many health issues and on about 18 meds. I am in major pain all the time since my single digits and I need morphine daily to make me just comfortable enough to manage my days. I'm very worried about the exercise components even though I am a swimmer which is good. I, also allergic to the sweetener as per tame. The dietitian is going to be doing the food class with me one on one bc of that and the diabetes. I have been looking for others like myself and really happy I found this post

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[LisaMergs 2,854]

These posts are so for me. I'm 39, about to get sleeved next month and my biggest worry are my mystery autoimmune diseases and fibromyalgia. I have sooo many health issues and on about 18 meds. I am in major pain all the time since my single digits and I need morphine daily to make me just comfortable enough to manage my days. I'm very worried about the exercise components even though I am a swimmer which is good. I, also allergic to the sweetener as per tame. The dietitian is going to be doing the food class with me one on one bc of that and the diabetes. I have been looking for others like myself and really happy I found this post

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I am an autoimmune nightmare. Literally. Started with APA and then Rheumatoid, then Sjogrens. You name it. Though SLE was in the cards but got lucky there.

There was some anecdotal findings about people with severe RA having had bypass who went into remission. That's all I needed to hear. Sign me up. In 9 years time, I didn't have a day without pain, fatigue, depression, you name it. Couldn't walk to the bathroom without pain let alone to the corner.

Well, I had the bypass in March. Six months ago. Guess what? I will not say I'm in "remission" ( the Rword!) BUT I also have literally been pain free/symptom free since that day. I have NO clue why, and frankly, I don't care. All I know is that these have been the best 6months in forever. I'll take it.

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These posts are so for me. I'm 39, about to get sleeved next month and my biggest worry are my mystery autoimmune diseases and fibromyalgia. I have sooo many health issues and on about 18 meds. I am in major pain all the time since my single digits and I need morphine daily to make me just comfortable enough to manage my days. I'm very worried about the exercise components even though I am a swimmer which is good. I, also allergic to the sweetener as per tame. The dietitian is going to be doing the food class with me one on one bc of that and the diabetes. I have been looking for others like myself and really happy I found this post

Sent from my SAMSUNG-SM-T807A using the BariatricPal App

I am an autoimmune nightmare. Literally. Started with APA and then Rheumatoid, then Sjogrens. You name it. Thought SLE was in the cards but got lucky there.

There were anecdotal findings about people with severe RA having had bypass who went into remission. That's all I needed to hear. Sign me up. In 9 years time, I didn't have a day without pain, fatigue, depression, you name it. Couldn't walk to the bathroom without pain let alone to the corner.

Well, I had the bypass in March. Six months ago. Guess what? I will not say I'm in "remission" ( the Rword!) BUT I also have literally been pain free/symptom free since that day. I have NO clue why, and frankly, I don't care. All I know is that these have been the best 6months in forever. I'll take it.

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[Butterflywarrior 241]

@@LisaMergs ty so much and how cool. I sure hope that happens to me!!

[ocgirl15 667]

I have autoimmune thyroid issues (hashimotos) and psoriasis. I am 9 months out psoriasis is very mild now. Just a little patch on my scalp... I don't like putting stuff my scalp so that is without medication. It use to cover all 4 limbs and was considered severe. I only use a topical foam 2-3 times a week now and use to take Ortezla orally... It made sick as a dog. My fibromyalgia is almost nonexistent and I am off cymbalta (And many more Rx's as well). I don't think autoimmune can be cured but WLS has made it 95% better. But why? Was it weightloss alone? Low carb/ low sugar diet? No NSAIDs. And old Rx was making it worse? I don't know. I do know I am 99% gluten free. My NUT allows whole grain In appropriate quantities in maintenance but I have chosen not to bring them back. I gut tells me it is the gluten. I really think there is something to diet and autoimmune connection. I don't think I would have realized that without WLS. And maybe giving up dairy or soy would work for

someone else. Dairy is my main Protein source and I am clear while eating. I lost weight on medifast which high soy and had the worst psoriasis flare of my life so I know it is more than just weight loss.

Edited September 21, 2016 by ocgirl15

[LisaMergs 2,854]

I have autoimmune thyroid issues (hashimotos) and psoriasis. I am 9 months out psoriasis is very mild now. Just a little patch on my scalp... I don't like putting stuff my scalp so that is without medication. It use to cover all 4 limbs and was considered severe. I only use a topical foam 2-3 times a week now and use to take Ortezla orally... It made sick as a dog. My fibromyalgia is almost nonexistent and I am off cymbalta (And many more Rx's as well). I don't think autoimmune can be cured but WLS has made it 95% better. But why? Was it weightloss alone? Low carb/ low sugar diet? No NSAIDs. And old Rx was making it worse? I don't know. I do know I am 99% gluten free. My NUT allows whole grain In appropriate quantities in maintenance but I have chosen not to bring them back. I gut tells me it is the gluten. I really think there is something to diet and autoimmune connection. I don't think I would have realized that without WLS. And maybe giving up dairy or soy would work for

someone else. Dairy is my main Protein source and I am clear while eating. I lost weight on medifast which high soy and had the worst psoriasis flare of my life so I know it is more than just weight loss.

That's just the thing- it was anecdotal findings. A bunch of surgeons and rheumatologists noticed that individuals with autoimmune diseases were showing fewer and fewer signs and symptoms of their diseases. Believe me, there will be more research into this.

As I stated- I don't care what the modality of change was/is- I'll take it!!!

I haven't had but a handful of pretzels over the last couple of months. So really, no gluten here either.

As for Cymbalta- I was given that for an off-label symptom of the RA- peripheral neuropathy. I'm weaning off now. No need!!!

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[jenjenp 63]

Hi all. I have. An autoimmune disease called polymialgia rheumatica. Took a long time to diagnose because the average age of first diagnosis is 70. And I was 46. I had actually lost 96 pounds on my own and was in the best shape of my life. But steroids for years has put me back up over 200. So I had the sleeve done 6 weeks ago. I am tapering off prednisone. May take a year. And my rheumatologist wants me to take methotrexate. I forget who mentioned taking that I know it's a chemi drug. Any bad side effects and did it work for you?

Also the original poster mentioned eyesight problems. One of the side effects of polymialgia rheumatica is giant cell something and it can blind you. Pmr. Mimics other diseases and is hard to diagnose. Needless to say my weight loss after surgery has been slow. I don't eat. Much. My rheumatologist says that the steroids make your body hold onto the weight.

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[LisaMergs 2,854]

Hi all. I have. An autoimmune disease called polymialgia rheumatica. Took a long time to diagnose because the average age of first diagnosis is 70. And I was 46. I had actually lost 96 pounds on my own and was in the best shape of my life. But steroids for years has put me back up over 200. So I had the sleeve done 6 weeks ago. I am tapering off prednisone. May take a year. And my rheumatologist wants me to take methotrexate. I forget who mentioned taking that I know it's a chemi drug. Any bad side effects and did it work for you?

Also the original poster mentioned eyesight problems. One of the side effects of polymialgia rheumatica is giant cell something and it can blind you. Pmr. Mimics other diseases and is hard to diagnose. Needless to say my weight loss after surgery has been slow. I don't eat. Much. My rheumatologist says that the steroids make your body hold onto the weight.

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I consider myself an expert when it comes to autoimmune rheumatic diseases.

First- let's talk your prednisone:

See an endocrinologist. Pronto. I was taking 60 mg of pred a day for years. There was no weaning off, because any time I got down to 20-25mg, I literally could not function. In any capacity. Enter the endocrinologist. Because the prednisone does just as much (if not more!) damage than good, my adrenal function was gone, I had prednisone induced glaucoma as well as prednisone induced diabetes. I needed off the meds ASAP. She prescribed me ORAL hydrocortisone. It mimics- and tricks- your body into believing it is prednisone, and is MUCH easier to wean off of than the prednisone. It took a total of 2.5 months vs over a year or longer if it were the prednisone. Do this. Again, ASAP. Ask for it.

Second- methotrexate, either by pill or injection: pills made me sick, puking, typical chemo side effects. The shots did not, and they actually work much more effectively than the pills, so if given a choice, it is a once a week teeny tiny needle. Side effects- don't bother paying attention to them. The benefits far outweigh any possible adverse effects. You will need regular blood work to monitor your liver enzymes. Again, I have been on a very high dosage, so mine were often screwy.

Third: I can't imagine any surgeon doing WLS or ANY elective surgery while you are on either of these meds. I had to "wash out" before I could have my surgery, meaning get all traces of the meds out of my blood system and stored reserves. Both drugs make you more susceptible to infection and the prednisone especially makes healing hard. And keeps weight on. Again- seeing an endocrinologist will get you off the pred by using oral hydrocortisone pills.

Usually PMR goes away after a year or so. I wonder if you don't have true rheumatoid arthritis? The tests- a sed rate and C-reactive Protein screen are used for PMR as well as other autoimmune arthritis diagnosis. Just a thought.

So- don't worry about side effects of the methotrexate and get off the pred!!!

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