Can you help please

Hi everyone,

Rheumy specialist says my symptoms are not caused by RA and that i do not have this.

He does not know what is causing my pain and swelling so says iv got fibro.

What concerns me now is the pain and swelling on my shoulders and upper back. It feels like there is fluid there and the pain and stiffness is constant. Mu strength in my arms is also decreased and affects my walking because strength has left me. The pain is worse when i am doing anything like washing my face,the pain is like a burning feeling all around my shoulders, collar bone and upper back,

Any ideas please

Thanks

Christine

32 Replies

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  • Hi Christine,

    I'm sorry to hear your Rheumy doesn't know what is going on with you but with fibromyalgia you don't accuallt get any swelling of any sort.

    If he says it isn't RA then there may be something other than fibromyalgia or you might have fibromyalgia with something else that causes the swelling, plus from what I have learnt about RA is that it doesn't effect large bones as in the shoulders.

    I hope everything is sorted very soon for you.

    Philip.

  • Thanks Phillip,

    He saw the swelling around my elbows and knees and said they were not on the joint itself. The shoulders have been a problem for a while but now constant. The pain is so back it makes me feel sick.

    I kept saying to him i dont have fibro mainly because excersie makes it better where mine does not. They are always changing the criteria for fibro, i guess to diagnose more people in the hope that we go away.

    i have a referral to a neurologist because of the weakness but not really thinking its the right place for me.

    Thanks for your help

    Christine

  • Thanks for your reply but Exercise doesn't make Fibro better if anything it makes things a lot worse because with Fibro you can't fight past the pain barrier and you would suffer so much more the next day or so, and the fatigue gets worse also, your in a terrible place with all the pains and discomfort you are suffering with. It can take a long time to be diagnosed with most things nowadays and I recomend you ask for second opinion.

    Philip.

  • I do need a second opinion..at the moment fed up with pointless referrals..my gp said rhuemy would only diagnose fibro and he did..

  • I had really bad pain in my shoulders before I was diagnosed with RA. It was awful. I was told this was polyarthritis as it would be severe in one joint for a few hours to a few days and then switch to the other side.

    I don't have Fibro but I guess it helped that my ESR and CRP were both very high in order to distinguish. After a while it all settled in my synovial joints and tendons in my hands and this was what got me diagnosed.

    If your bloods are negative for inflammation and you don't have swollen synovial joints then I believe they often do fall back on fibro as a diagnosis. Maybe this is fair enough where RA is concerned because it is usually quite specific after a while?

    But it also worth fighting your corner if you don't accept this diagnosis because there are other types of sero negative inflammatory arthritis. Perhaps you should ask to have ultrasound scans of your joints and muscles to confirm whether there is connective tissue inflammation or not? I think we know instinctively when a diagnosis is incorrect but many have to fight hard for diagnosis of Lupus and PsA. However Fibro is meant to be terribly painful and affects larger areas so worth checking out the Fibro HU community too?

  • Thanks for your help. I guess its another trip to the doctor.

  • Sometimes ra can affect the shoulders. I suffer with pain, stiffness and weakness in my upper arms, shoulders and elbows which is definitely down to my ra. When on the correct treatment it goes away. That said my bloods also have positive rf and raised esr. The first rheumatologist I saw said I didn't have ra but I knew he was wrong and had to fight for the correct diagnosis. I hope you can get to the bottom of this x

  • Thanks....I dont think my bloods have showed raised esr and im negative for rf.

    Pain in m shoulders not so baad today but when it comes its horrible pain and i feel like iv got flu for that time.

  • My friend had similar and was given a drug for epilepsy and it worked!

  • Thanks..iv never beeen offered those drugs.

  • The epilepsy drug is probably either Gaberpentin or Pregabalin and both are licenced as anti convulscents, but are used a lot for neuropathic symptoms too.

    As many people with Fibro also have small fiber neuropathy these drugs are often used for this condition I believe, as well as nerve damage from Shingles, trauma, MS and Lupus and RA - but they are quite powerful and some (me!) can't hack the side effects.

    But if Fibro is what they believe is causing your problems Christine then it may well be worth trying these epilepsy drugs. Have you tried Amitriptyline yet I wonder? I use this and it has really helped me in the past.

  • Thanks...yes iv had amytriptyline, i was ok on it for a while then it started to burn my esophagus.

    I will ask my doctor about epilepsy drugs, anything is worth a try.

  • Hiya Christine. Do you think it could be osteoarthritis? The pain in my experience can be very similar, in fact I thought mine was my RD having a go but it appears it's my OA progressing. Has your Rheumy questioned stiffness, not only upon rising but whenever you've been still for any length of time, particularly in the evening?

  • I told him i was very stiff..my legs in the morning or when im sitting, he didnt really comment. OA is possible as i have cervical spondylitis and lumber. I have always had some stiffness and pain in neck and shoulder area but this is burning awful pain and i feel unwell at the same time. I had thought it could be that my cervical spine had got worse and the fluid feeling was caused by further damage to the bones. I had an mri about 18months ago that showed some nerve damage and stenosis.

    Thanks

    Christine

  • Odd he didn't even pass comment?! I also have cervical & lumbar spondylosis so I'm erring toward it possibly being the cervical spondylosis causing referred pain. I was experiencing similar problems, lower back (& into hips), neck, shoulders & upper arms even at times as low down as the elbows. I couldn't lift my arms higher than horizontal without searing pain & I was stiffening up even though I was attempting gentle exercise. I was also having almost continual cervicogenic headaches, very wearing, as that plus all the other issues was seriously impeding my sleep, down to a couple of hours a night then so weary I was going to bed to rest in the afternoon & sleeping an hour or so. My Rheumy requested my GP do a full pain meds review & we went through all the options, tramadol, gabapentin, pregabalin etc all of which I refused & BuTrans patches were her next option. Amitriptyline was her suggestion for the cervicogenic headaches in an effort to relax the neck muscles. I see her for my 3rd monthly review on Monday to most likely up the dose of both as they're helping but I'm not quite there yet.

    Hope this helps, if you want to discuss any more I'm more than happy to share, if it helps!

  • Yes it really does help. Iv got a neurologist appt in Nov because of the weakness but i feel that wont help. The weakness it as its worst when im using my arms and like you mentioned raising them is almost impossible without the pain..its then i get the weakness.

    Thanks

    Christine

  • Oh good. I have weakness in my hands, very poor grip & lots of broken crockery has been binned! It's possible that the Neurologist may pick up whatever is causing the probs., particularly if he examines/concentrates on your spine. Hope so anyway, it's no fun is it?

    In the meantime maybe see your GP & ask if he can prescribe some appropriate pain relief. I would think it's affecting your daily life & you need something to tide you over until your Neurology appointment.

    I know it's not until next month but do let us know how you get on won't you?

    Take care.

  • Yes will be in touch after appointment and thanks for your time.

    Christine

  • No probs, anytime.

  • There is another disease which can cause a lot of your upper body symptoms which a rheumatologist needs to investigate which is poly myalgia rheumatica PMR it is treated with steroids.

    High ESR & CRP are inflammatory markers and would be unlikely to be indicative of fibro.

    Best wishes hope you soon get it sorted.

  • Yes iv heard of that....i go on thyroid uk as i have Hashimotos and a member ws talking about that conidtion..its also autoimmune so maybe there is a connection.

    Thanks

    Christine

  • Hello

    Sorry to hear of your frustration, proper diagnosis can be a long road.

    RA does in fact affect your shoulders, my RA started in my hands then feet, then moved to my wrists then my shoulders. It can affect any joint in your body. its affects different people in different patterns.

    Originally when I woke up one day and could not move my shoulder, could not lift my arm more than 1/2 way I was misdiagnosed with a rotary cuff injury by my family doctor. At physio they noticed right away I did not present at all as a rotary cuff injury , they seem thousands. They thought I had inflammation due to bursitis or frozen shoulder. Again a misdiagnosis. My rheumy was able to determine my shoulder stiffness and pain was due to my RA. An ultrasound confirmed this.

    Everyone with RA has different joints affected, in different patterns and intervals, it's a very individualized disease.

    Don't give up hope. I goty fingers crossed for you that the reason for your shoulder issues is found and you are on the road to treatment.

  • Thanks..

    Iv looked at bursitis and it does sound possible although i have nothing to prove this.

    Yesterday i had a good day and today the pains back with avengence.

    I think from your advice and others on here i really do need an ultra sound to find out if the pains due to inflamation or something else.

    Do you know why they sometimes do an ultra sound instead on an mri, i had an mri on cervical spine about 18 months ago which showed some nerve damage and stenosis, however i was not in the kind of pain.

    Thanks

    Christine

  • I was in exactly the same situation recently. I had been diagnosed with Crohns/ pan colitis, and psoriasis, and inflammatory arthritis, and been treated for them for 15 years. Then along came new rheumy (still in training) and decided to put me on full strength MTX and sulfasalazine. The MTX caused severe flare in the colitis. so I had to stop it, and the sulfasalazine nearly killed me. Fair dues, we didn't know I was also porphyric but he wouldn't stop the medications. When I stopped all , and refused injectable MTX, he then said I had fibro, not arthritis, and terminated all further OP treatment. Since fibro has been shown to actually have a physical basis it has become over-diagnosed IMHO. Treatment should be through the pain clinic and neurologist, but is often called "untreatable" and the patient dumped.

    After a 2 year hiatus, I requested a second opinion, and the rheumy's boss got involved, and discovered.........I have inflammatory arthritis, on the basis that a kenalog injection had immediate and irrefutable results - I got out my wheel chair and walked for the first time in 3 years.

    Bottom line is if you feel your current diagnosis isn't right, and your rheumy ignores what for you are significant symptoms, just keep pressing for a second opinion. TBH I had to go private to get the initial diagnosis of crohns / pan colitis after years of severe illness, and if I had to I would do the same again, and it may not be as expensive as you might think. It hurts me to say that as I am a massive supporter of the NHS. We just have to be realistic about certain medics abilities, and what the options are if you hit a brick wall.

  • I was in exactly the same situation recently. I had been diagnosed with Crohns/ pan colitis, and psoriasis, and inflammatory arthritis, and been treated for them for 15 years. Then along came new rheumy (still in training) and decided to put me on full strength MTX and sulfasalazine. The MTX caused severe flare in the colitis. so I had to stop it, and the sulfasalazine nearly killed me. Fair dues, we didn't know I was also porphyric but he wouldn't stop the medications. When I stopped all , and refused injectable MTX, he then said I had fibro, not arthritis, and terminated all further OP treatment. Since fibro has been shown to actually have a physical basis it has become over-diagnosed IMHO. Treatment should be through the pain clinic and neurologist, but is often called "untreatable" and the patient dumped.

    After a 2 year hiatus, I requested a second opinion, and the rheumy's boss got involved, and discovered.........I have inflammatory arthritis, on the basis that a kenalog injection had immediate and irrefutable results - I got out my wheel chair and walked for the first time in 3 years.

    Bottom line is if you feel your current diagnosis isn't right, and your rheumy ignores what for you are significant symptoms, just keep pressing for a second opinion. TBH I had to go private to get the initial diagnosis of crohns / pan colitis after years of severe illness, and if I had to I would do the same again, and it may not be as expensive as you might think. It hurts me to say that as I am a massive supporter of the NHS. We just have to be realistic about certain medics abilities, and what the options are if you hit a brick wall.

  • Thank you for that......I also have crohns disease, first started when i ws 23 im now 56...i had a bowel resection and was not put on medication. Iv had many good years regarding the crohns but developed Hashimotos and severe pain in my joints. Maybe there is a connection here...

    Can i ask you what area the rheumy you saw is based?

    Thanks Christine

  • I'm in the West of Wales.

    I would suspect that your joint problems are inflammatory & related to your bowel problem having been there myself, but of course, I'm not your doctor! I have swollen joints all over - including hands & feet, but also the major joints, swellings on lower spine, spondy type problems too. I've had steroid injections in both elbows & wrists. The joint pain can wander, is asymmetrical (ie left ankle, right knee, etc) which is so characteristic of this type of inflammatory bowel disease that the consultant used me for teaching! So the "alternative" diagnosis was obviously rubbish, but it's so difficult when you're in pain and unwell to always be able to manage the consultation.

  • Hi,

    Sorry for being such a pain and asking you all these questions.

    When you had your diagnosis of inflamatory athritus is that the same as RA or something different. I never realised there were quite so many forms.

    Thanks

    Christine

  • It is very confusing, as there are many types of arthritis - over 100 I think. RA is an inflammatory disease, but there are inflammatory arthrides (with a "D") that are just like RA. PsA (psoriatic arthritis) is a definite type of inflammatory arthritis, which can be very like RA, and may well be closer to the type that people with IBD (Crohns / colitis) get. Using the term "RA" may be useful when dealing with non-medical people, as there is some hazy understanding that it's not the same as osteoarthritis, even if it's not the actual diagnosis.

    I still say the bottom line is, most of these can be treated using the same drugs, although in the published studies some of the new biologics are better than others if there is another inflammatory disease present. The gateway to those drugs is the DMARD route, though, and the barrier is their cost. The other problem is if the rheumatologist and the gastroenterologist both try & wait for the other to treat the underlying inflammation - it can be a real impasse.

    Don't worry about asking questions - these forums are the few places us "rare" types find answers. (Sometimes!)

  • You have been so helpful and it appears alot clearer to me now.

    My crohns has been pretty stable apart from a few weeks ago when i had alot of pain and sickness and it felt just like when i had a bowel obstruction...but this time it eased off. I had bloods done and no inflamation markers showed up. However when i am having joint pain i do feel like i am getting flu but never actually do.

    I wonder if its possible to have high inflamatory markers only at the time of pain when feeling unwell.

    My doctor agrees that osteo does not cause flu- like symptoms so it done seem like something else is going on.

    Chatting on here has helped gain knowledge of how others got diagnosed and how in the end we know ourselves when something is not quite right despite having tests.

    Thanks

    Christine

  • Sometimes it can be a process of peeling back the layers like an onion, if you've got lots of different symptoms which don't seem connected. Chronic Fatigue (CFS) is often found with many of the inflammatory illnesses, including forms of arthritis, IBD, psoriasis, among many. Like 'flu, it can be quite incapacitating, but doesn't get better after a week. Then again, some flus can leave you weak for a long time. The thing to remember, if you have one or more chronic conditions, you can still get ill with something else, so don't make all your symptoms "fit" your primary diagnosis!

    One final point, is that if you're having long term problems, keep a diary of these problems, daily, so you have accurate information, dates, onset, duration. It may seem a bit odd if you are trying to be positive, trying to be "better" and get on with things, but it really will help establish patterns to help with diagnosis.

  • I was in exactly the same situation recently. I had been diagnosed with Crohns/ pan colitis, and psoriasis, and inflammatory arthritis, and been treated for them for 15 years. Then along came new rheumy (still in training) and decided to put me on full strength MTX and sulfasalazine. The MTX caused severe flare in the colitis. so I had to stop it, and the sulfasalazine nearly killed me. Fair dues, we didn't know I was also porphyric but he wouldn't stop the medications. When I stopped all , and refused injectable MTX, he then said I had fibro, not arthritis, and terminated all further OP treatment. Since fibro has been shown to actually have a physical basis it has become over-diagnosed IMHO. Treatment should be through the pain clinic and neurologist, but is often called "untreatable" and the patient dumped.

    After a 2 year hiatus, I requested a second opinion, and the rheumy's boss got involved, and discovered.........I have inflammatory arthritis, on the basis that a kenalog injection had immediate and irrefutable results - I got out my wheel chair and walked for the first time in 3 years.

    Bottom line is if you feel your current diagnosis isn't right, and your rheumy ignores what for you are significant symptoms, just keep pressing for a second opinion. TBH I had to go private to get the initial diagnosis of crohns / pan colitis after years of severe illness, and if I had to I would do the same again, and it may not be as expensive as you might think. It hurts me to say that as I am a massive supporter of the NHS. We just have to be realistic about certain medics abilities, and what the options are if you hit a brick wall.

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