seronegative v fibromyalgia

I have been in such pain for 6 years. Started with pain and swelling in hands and wrists I couldnt even pick up a piece of paper and if a piece of paper touched my hand would feel like literally it was being hit by a hammer.I would get lumps almost looked fluid filled on the back of the hand that was hurting or inside of wrist or the outside of wrist.This would travel overnight to the next joint.Then all aymptoms would go away for maybe 4 months then appear agin.Over the years it has changed the pain happens every day and stays in the same place for days.I dont get the round fluid like swelling, instead the whole finger or hand swells.When I get it in my shoulders it feels like my shoulder is being ripped out of the socket and cant use the arm at all until the pain goes. My current Rheumatologist seemed to think is seronegative arthritis and put me on lots of meds that didnt work.Finally put me on sulfasalazine and bingo relief.I dont have a good relationship with this rheumatologist and so went to another one who insists I have fibromyalgia and told me to immediately stop sulfasalazine. That was 6 days ago and i am now feeling uncomfortable.Does anybody else has the same symptoms and know for sure what they have for sure? Im scared that I now have no pain relief.The new rheumatologist said it may have been coinsidence that my pain got better on sulfa. I already have one autoimmune disease, graves. for which I have had a total thyroidectomy.I just dont seem to be able to get a good specialist

27 Replies

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  • Also get pain in groin,neck, back,and knees but not as bad as the shoulders, wrists,hands and elbows(inside of elbows and almost in armpits of shoulders) but no sign of joint damge

  • Hi dendroz I am seronegative and take Methotrexate. Your symptoms sound same as mine especially the fluid filled bumps on wrists. I was examined for fibro but this turned out to be negative. There are others on this site who have both RA and Fibro and I am sure they will reply soon. Hope you get your meds sorted soon. I personally don't believe in coincidences but each to their own. You will know what's best for you and if you feel you need to go back on sulpha then push for it. Take care and good luck X

  • Hi dendroz, I was initially diagnosed with seronegative spondyloathropies which changed to Ankylosing Spondylitis with Enthesitis, Ehthesitis is inflammation where the tendons and ligaments attach to the bone. I've taken all sorts of things over the years i.e. Sulfa/MTX/Leflunomide and I live on painkillers.

    I'd say if you felt benefit with the Sulpha ask to go back on it, a friend of mine was diagnosed with fibromyalgia and he's on MTX and Leflunomide. It sounds like you need to sit down and have a good long chat with this new doctor and don't let him dismiss you.

    Good luck

    Beth xx

  • I have ra and fibro, its hard trying to work out which pain is ra or fibro. I think you sound like you have a bit of both. Like the others say speak to rheumy about your condition. you need help now. sylvi.xx

  • Thankyou you all for you really speedy answers.

    The trouble is I did'nt actualy get to see the new rheumatologist just a locum.He has given me another appointment for 7 months time. Said there are no pain killers to deal with fibro and wants me to see a pain specialist and deal with the pain that way!!! fat chance. He said I had all 18 tender points, although I disagree with that and the ones that were tender he really really put lots of pressure on and I jumped out of my seat. I dont have signs of joint damage but some of my finger joints hurt all the time.I dont have a good GP and I dont feel I have a good specialist yet. This locum said he does not see the point in giving me dangerous drugs when they are not needed and that he has seen one death at his practice vecause of sulfasalazine. All other forms of painkillers have not worked for me in the past.Does anybody know how long it takes for sulfasalazine to get out of the system? I need to know if I do start having serious pain again if it is because the sulfa has worn off, then I will know its not coinsidence.I have tried phoning the hospital but as usual nobody phones back x

  • I have also had silicone breast implants,now removed.

    DID THE RA SYMPTOMS BEGIN GRADUALLY OR OVER NIGHT? FOR ME IT HAPPENED OVER NIGHT NO WARNING AND AFTER VERY SAD SITUATION OF HAVONG TO END A 7 MONTH PREGNANY DUE TO OUR BABY HAVING FATAL DISEASE. COULD THAT HAVE BOUGHT ON THIS PROBLEM,OR PERHAPS IMPLANTS?

  • oh thats so sad, I just read some info on this last night sent out to me by NRAS, apparently it is very unlikely that the pregnancy brings on RA however the hormone (I can't remember what it was called) thats is involved with breast milk may bring it on if it is in the early stages; so it may have just speeded things up..... the stress I'm sure would not have helped either, not sure about breast implants.

    I'm very surprised he stopped your sulphalazine if it was helping.

    In my opinion, it's no wonder you have Fybro because of the emotional turmoil you must have gone through, hope your talking to someone about all this and not bottling it up as this will make you fybro worse.

    take care x

  • Prolactin

  • I also have RA and Fibro and Like Silyvi I couldnt tell you which symptoms were which!

    But as for there being no pain killers for fibro this isnt true!

    I take Gabapentin and Silyvi takes Pregabalin (if I remeber right)

    these are medications that act on the nerve pain fibro causes.

    We also both take Amiltriptyline which helps with the disturbed sleep from fibro and muscle spasms.

    I also take Zopiclone which is to aid sleep as with the fibro I really struggle to sleep through the pain.

    I also take Citalopram which is a antidepresent which helps with the feelings you get from the fibro.

    I do take many other medications also for my RA and hieatus hernia etc, but the above meds are the ones I was told are prescribed for the fibro.

    I take slow release MST Morphine for my main pain relief and have been able to get on with life much better since Ive been on this, my pain is controled better although still not fully.

    So sorry you are being messed about like this, most rheumatology departments are supposed to offer a phone line you can ring and speak to the nurse, ask your GP if he can find this out for you or just phone the department yourself, dont give in, if you see Sylvi's previous blogs because she kept on phoning them thats the only reason they listened to her and finally diagnosed her proper, dont let them fob you off hun, you deserve to know whats going on with you!!

    Take care

    Julie x

  • Hi Julie,

    Thanks for your detailed answer.

    I know I am a pain but if sulfasalazine works does it mean I do have arthritis? if I am correct this medication wont help with fibro, will it?

    I have some amitriptyline in my cupboard that I was given last year but did'nt use. I take it that if I use this and have arthritis that that wont work but will work if I have fibro?

    Denise x

  • Hi there,

    So sorry you're struggling to get listened to & get help. If you don't like your doc you can ask to see another one, or if your practice only has one then change practices if possible. You need to get some help with managing pain while people work out exactly what you've got. A lot of people here have had a long slow journey to get a diagnosis, and onto proper long term treatment - but it can take a lot of nagging to get there so don't give up. And yes, quite a lot of us can point to one or more stressful things that we think may have played a role in triggering our illness. But do try to put that to one side & focus on getting treatment. Good luck. Polly

  • I have both RA and Fibro, the sulphasalazine will only work on the RA ,the drugs detailed by Julie aka Ra -Fibro work on the fibro side of things x

  • Thankyou all so much for the info.This is a great site with lovely people.

    Im going to try the amitriptyline and see what happens.If there is no improvement then im convinced the first Rheumatologist had it right( maybe I should have stayed with him) but I amgoing to pester the secretary of the new Rheummy until I get an earlier app or some kind of answer as to what I should do

    Denise xxx

  • Hi Denise - you need to differentiate between Arthritis - which is generally what people call Osteoarthritis, the wear and tear ageing arthritis and inflammatory arthritis which is an autoimmune condition and includes several different conditions including Ankylosing Spondylitis and Lupus as well as RA.

    If the Sulpha was working for you then it seems a shame that you were advised to come off it. You should have been having 2 weekly blood tests while you were on it and that is an effective way of spotting if anything potentially dangerous is occouring? I was put on Sulpha by my GP because he said that he thought I had RA and it was the least toxic of the DMARD drugs but I had to come off it because i had an allergy to it - but the rheumy wasn't pleased that I had been put on it as he said it was too early so maybe would have had to come off it anyhow. My rheumy delayed diagnosing me initially for the same reasons as your locum - the drugs are very toxic and prescribing them needs weighing up with the risk of the disease progressing if it is RA or one of the other autoimmune conditions. I can't say if your inflamed joints sound more like fibro or RA or a different condition but a good rheumatologist should know the difference and I have read somewhere that fibro tends to affect the larger joints more than the fingers etc and that the location of pain is usually different? Also that fibro isn't usually inflammatory but I could be wrong here?

    My advice would be to find a good GP initially as they can then refer you to a good rheumatologist. I take Amitriptyline and it works well for chronic pain and helps sleep but ibuprofen also works well for me.

    Good luck! Tilda x

  • Hi Tilda,

    I have been told its not osteo.I presume because I already have one autoimmune disease that RA and some of the others go hand in hand. I did manage to get the Rheumatologists secretary on the phone this morning and she says she will speak to the doc and get back to me. It may be that he will say to go back to the sulfa. For me it meant that I was leading a normal life, even cycling to work every day, something that I have'nt been able to do for a long time. I was on the sulfa for 9 months and only having a flare maybe once evry 6 weeks or so and nowhere near as painful as they were without the meds.

    Its funny you say that usually fibro affects the larger joints as I also read that of seronegative arthritis also affects the larger joints. Mine is mainly the wrists and fingers and shoulders which are the smaller joints.Its all very confusing. I suppose its difficult when the blood shows nothing. When I first went to see the Rheumy they said I had symptoms of RA and Lupus, but the specific tests for these diseases all came back neg. My GP said my RF was very high, but Rheummy said neg. I get back and neck ache every day and so had an MRI. That came back as not qualifying as inflammatory.I get a lot of pain on and off around the right kidney area and have attended A&E on a few occasions, had CT scan showed nothing. I do feel like in going insane. Im not happy I have something wrong but would like to put a name to it!!!!

    Denise x

  • Yes I think you are right about the autoimmune diseases going together because I have another one too and that certainly convinced my GP I had RA. I only had a low positive for rheumatoid factor and a negative anti-ccp, but I had raised inflammatory markers - so my rheumy said on the strength of symptoms (mainly visible in hands) and what I had told him and what he had found (plus photos of swollen joints) I had sero-negative RA. I asked him how it was sero negative if I had a positive RF and he said "good point - but it's important not to get too hung up on labels but keep an open mind to changes.. but for now I think this is RA". And I'd already tried sulpha so methotrexate was the next in line - which I'm no on.

    I understand completely where you are at and how you feel about not having a name. I think I would trust the rheumy who put you on the Sulpha as it obviously worked for you. As someone else has said I'm not too convinced by coincidences in this context. For instance I've just found some nodules on my hand that weren't there when I started the MTX 3 weeks ago and also my hair has started moulting by the gallon load and gone all wiry and dry - coincidence?!

    Sounds to me as though it probably is sero-negative RA but it is all very confusing and I don't think you'll help yourself if you switch around and get different opinions unless you do it very methodically?

    It is great to have a diagnosis when you get one finally but then comes the "do i really have it though or did i just convince the rheumy i had it because I was desperate for certainty .. blah blah". But the physio took one look at my hands yesterday and told me rather seriously that it could be nothing else my hands were "classic" and gave me a look that said "come out of denial woman!" Good luck with your doctors and getting a diagnosis. I've never had any MRI scans - just one x-ray of my hands (normal) so they should go by symptoms and what they can see, feel and hear as even bloods "don't give the whole picture" according to my rheumy - and he's quite a cautious chap too! TTx

  • Hi Tilda,

    What do your hands look like? im not sure I see a difference in mine!!

    I have had a very small round lump come up on the palm of my hand and it seems to be on the tendon.

    I did receive a call back from my new Rheumy's secretary and was told that the consultant has told me to go back on sulfa if that is helping.They are sending me out 2 blood test froms and said to have 3monthly tests. Im concerned now that because I have been off the sulfa for 1 week if I have side effects now.

    I am convinced that I dont have fibro but am also in two minds about taking the sulfa because of what the locum told me about a patient who died because of it. This is just a nightmare.

    Denise x

  • Oh dear what strange advice you seem to be getting Denise - where do you live I wonder - is it in the UK? When I was on Sulpha i had to have 2 weekly bloodtests same as MTX so am a bit baffled that you don't seem to have them that often. The idea is that all these DMARDs can cause liver and kidney damage and affect your white blood cell count so it's important to have these regular checks because otherwise these drugs can be dangerous. But if you are having these checks every few weeks then it should be quite safe because they are monitoring you so I'm surprised anyone died as the GP or rheumy nurse should have picked up on this long before it became a problem?

    My RA certainly took a while to reveal itself visibly but for the past few months 2 of my middle finger joints have been swollen and blue/ purple looking and are quite painful and very stiff. My right forefinger is twice as thick as my left and bulges in the middle and same the other way round for my left little finger which currently looks very weird and sort of pregnant. All my other fingers take turns to go pregnant and are all a bit stiff so I can't clench either of my hands fully but the worst fingers stick out and some days don't bend at all but other days go to 45 degrees but never close completely now. My knuckles are all a bit swollen but the one under the forefinger is very raised and puffy and painful to touch. The physio is working on it twice a week just now and says it's tendonitis - the tendons leading up to the knuckles that's causing this inflammation. My wrists hurt more than my fingers or my knuckles but they don't show at all and nor do my elbows much. But my hands are quite noticeably puffy now and the veins are all raised too. Hope that helps. They did hurt a lot for about 6 months before it really showed at all though. And I'm an artist and use them all the time so I don't think this kind of repetitive activity helps much but I'm not going to stop doing what I love for RA!

    Poor you being given all this strange contradictory info - it must be really hellish - I know just how you feel because the stage when I thought no one believed me was by far the worst.

    Take care. Tilda x

  • Hi Tilda,

    I live in the uk.

    I did start off with 2 weekly blood tests, then monthly and now 3 monthly.I have been on sulfa for 9 months.

    Prior to this I had 5 years of pain without any help from a rheumatologist, the only reason I went was because the pain was getting to be a daily occurance. I am curious that I dont seem to have anything that you can see on my hands.Surely by now they would start to show something. Im also concerned that my dry eyes have also turned into dry mouth and very dry nose. I am going to see a physio next week, who has been told I have fibro and so is going to treat me for that!!

    I have not started the sulfa again yet as im worried about the lack of blood tests.I may just get some blood forms from my GP and go from there.

  • Hi there,

    It does take quite a while for these drugs to leave your body completely so if you've only stopped for a short while the sulphastuff is probably still there, so shouldn'tbe too hard for your body to readapt to it. And it is hugely rare to have such extreme reactions, and you've already shown that you're not allergic to the drug so I don't think you should worry about something that's not likely when you've got so much else to deal with.

    I think sometimes you have to go on your gut instincts and if the sulpha feels right for you you should make the docs explain why you shouldn't stay on it if it works. That's (one of) the rubbish things about this disease that it's so variable -but it's your body so keep on asking for proper explanations. Hope you get better answers soon. Polly

  • Hi helixhelix,

    I suppose im more worried abot having kidney and liver problems. The locum scared me with what he said. Im told by other sufferers that I should be having 2 weekly blood tests, but now im having 3 monthly tests.That indeed is a long time for problems to arise

    Denise x

  • could you explain to GP how worried you are and ask to go to at least 4 or 6 weeks? I'm on Sulpha and on a 4+ weeks cycle which feels ok to me. Polly

  • Yes I suppose I could. I did speak to my Rheumy's secretary monday and she said she would send 2 blood test forms out, which I still have'nt received. I suppose I could go get some more from my own GP. I think 2 blood tests in 6 six months is just not enough.

    Denise x

  • i take sulfasalazine amongst others. ive been having monthly blood tests for the last yr but my rheumatologist has changed it to every 3 months. i was told it was to do with a change in the guidelines?? my gp on the other hand says if i dont have monthly bloodtests he wont issue my prescription.

  • Push for tests and I would also tell your GP that you are not confident in the locum's decision.

    Fibro does not cause repetitive localised symptoms (although many people with Fibro also have myofascial pain which CAN cause this).

    Fibro does not cause inflammation.

    Fibro would not respond to sulfasalazine.

    There are many medications and treatments known to help Fibro.

    So overall, I would say that that rheumatologist's knowledge was out-of-date. Check the FibroAction website fibroaction.org/Pages/About... and also the NHS Choices website - the latter can be especially helpful when taking info to GPs as they cannot legitimately ignore the NHS's own information.

    You may well have Fibro on top of a seronegative arthritis. But leaving an AI condition untreated can cause you damage.

  • It sounds like we are having very similar battles. I was diagnosed with seronegative RA 3 years ago. I was put onto methotrexate tablets and they were starting to give me some relief after 10 weeks. unfortunately I just could not stop vomiting so they changed me to sulfasalazine. This did not help me at all so after 12 weeks they changed to lefudamide. Again no help so they were discussing methotrexate injections instead. At this point my Liver function test started to become a problem and they took me off all meds. this was 2 years ago and I have lived on morphine and Opiates ever since. I have had many tests and scans and it has proved I have higher markers but no damage or disease in the liver, so I can start the meds again. unfortunately at this time we had to move house and relocate as my husband changed jobs. I have now moved area and have had to transfer rheumatologists. My new one has all the information from my previous clinics but was determined to do all the test again. this has taken 6 months. in this time I have started to juice detox and juice 2 days a week to naturally reduce my inflammation, and it has really helped me. However this has reduced my inflammation markers in the blood tests and so he is now questioning the RA and say he feels it is all fibromyalgia. They have added Gabapentin to my medication and whilst it has given me some general relief, pain has intensified in most joints and muscles. All I want is the Methotrexate injections as this is the only thing that has ever given me relief. My physio and GP think it is classic RA based on pain and style of movement, by I cannot get past the rheumatologist to get the treatment. I understand how you feel regarding the sulfasalazine. I was told previously I had RA and Fibromyalgia and I also have another couple of autoimmune diseases which complicate things. Why is it that after years of struggling consultants do not listen to how we feel in our bodies, as we are the experts in this area. I feel your frustration and hope you get some assistance soon.

  • I would say, Rheumatology is a wretched profession except very few decent ones. This original post confirms my belief. They live in dark ages.

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