I'm just starting off on this wonderful rollercoaster that is diagnostic medicine. At this point, my Rheumatologist suspects either RA or Fibromyalgia. Unfortunately (?), my symptoms aren't huge enough to make a certain diagnosis and so far my bloods are all normal with the exception of a higher than normal red cell folate.
I was just wondering whether anyone else had symptoms that include:
- Joint stiffness but no swelling
- Some tender points fitting fibro but no other fibro symptoms
- Loss of soft touch in feet
- Loss of proprioception in feet
- Loss of Vibration sense in feet
- Sporadic foot bursitis
Anyway, either way, I'll be sure to check in here often, seems like a nice group of people.
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RobV
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Check out "enthesitis" - its common with spondyloarthritis, which is sero-negative (i.e no positive blood tests) and the other main form of inflammatory arthritis, and has sore points very close to fibro points in a lot of areas. There is a difference in the "feeling" of those sore points though - with enthesitis its a definite patch right where tendon joins on bone, whereas with fibro its much more general, and will be sore to lighter touch, with a more "aching all over" feeling with fibro. Bursitis is often confused with enthesitis. The neuro symptoms are more like pressure on spinal nerves than anything directly due to joints, but that can also happen with spondyloarthritis (spinal arthritis). The NHS doesn't seem particularly good at diagnosing spondyloarthritis unless it gets to the absolutely obvious point where there is enough damage in sacroiliac joints to call it ankylosing spondylitis, or obvious enough skin rash to call it Psoriatic arthritis - but there are other more subtle forms of spondyloarthritis, as well as early AS or PsA that do seem to be mis-diagnosed as fibro far too often.
Welcome but sorry you have had to join us, it is frustrating when you dont get a definate diagnosis isnt it, I am in a similar situation. Went to see Rheumy yesterday expecting to get a diagnosis of RA as raised RF and many symptoms of RA but other bloods whci would have fitted with that diagnosis were normal so came out with a diagnosis of undifferentiated inflammatory arthritis. Whilst it is good to know may not be RA it still does not give the answers you want does it.
When do you see the rheumy again and how are they treating you.
Hope you get answers soon and some relief from your symptoms
The people on here are very knowledgeable and welcoming and I am sure you will get more info from some of them.
Well, I see him again in six weeks - at the moment he's got me on medication for Fibro (no idea what, small blue pills - make me drowsy and give me dry mouth). Great guy, listens to everything and is quite efficient with the examinations. Good sense of humour as well which helps.
I'm going for a chest X-ray to rule out TB and then a bunch of other bloods (including the Anti-CCP) so that should shed some light. Of course, the Anti-CCP is only positive in 45% of RA patients so there are a lot of false negatives out there.
@earthwitch - thanks for that linkup, I'll read up about it
It's great to have a place like this - means I don't have to bother my family or friends about it too much
Small blue pills might be amtripilyn I take them as was originally diagnosed with just CPD as bloods didn’t show up RA but I had high CCP levels - I have since now been diagnosed with RA and have been on predisolone metho pen( after tablets ) sulphazine and hydroxy has all be very painful but am now on benapli injections as well which has really helped and it seems inflammation levels swelling etc have really gone down So I am now having to reducing steroid as well and am down to 3mg plus on naxproxen along with the other other meds..
I have a burning stomach I always feel sick ( on folic acid and ranitidine) and I keep getting headaches feeling dizzy burning sensations mostly in tummy but can be other places I am restless and boy does my neck and shoulders back lower back hurt all the time , fed up with it ... and I ache and tired I can’t concentrate and struggle some days weeks with this fuzzy head feeling and not remembering but this isn’t all the time it can vary although biological have really helped me ... but still don’t sleep all that well any suggestions as to whether I may have something ontop of RA ?? Rheumo keep saying and have done since word go that the neck pain and into shoulders is not RA related ( I have had lung X-rays they are now fine as before I had pleural effusion ) had draining etc I’ve had a dexta scan this was fine and it seems liver kidney are alright as I have bloods done every month for the metho
Diagnosed with ra in april, couldnt tollerate mtx so went on leflunomide with steroid injections inbetween to keep me going. Last few months been horrendous now rheumy thinks i cud have fibromygelia as well. Leflunomide not working so had another steroid yesterday which has worked in some joints so we know its ra now need different meds. Still got muscle aches and sore spots but rheumy says ra needs sorting first as it damages bones!
Suppose then i can get fibro sorted with painkillers.
if you also join fibroaction you will be able to access a lot of info on fm.
sandra.
Hello and a warm welcome. The thing I would say is that you are very lucky to be seeing your rheumy again so soon. I too was seen by my consultant first and he said "inconclusive" and I wasn't diagnosed until four months later, by which time I was really showing all the classic symptoms of RA. That was over a year ago and I've only seen him once since so it's really good to be seen and have be tested thoroughly so that you aren't put on DMARDs unless you clearly do have inflammatory arthritis of some sort. The trouble with being seen so infrequently is that it makes it harder to trust diagnosis and to feel confident in your consultant so that's why I say you are lucky in this regard.
Having now joined this site (a great move!), my advice to you is to get yourself informed about the various forms of arthritis and about Fibro too. And also learn about drugs before you are prescribed them so you know what to expect and what to request if asked. The blue pills you are taking for instance, are called Amitriptyline and they used to be used as an anti-depressent in much higher doses but are now used for neuropathy (nerve pain) and contain quite a strong sedative and are also used help stop kids from bed wetting. They are non-adictive and some people with RA take them too are more commonly used to treat conditions such as fibro. I take one a night often because they help me sleep although I don't suffer from fibro - just RA. A good start would be to research the disease modifying drugs too so that if you are offered one or several you have an idea of what kind of side effects they might cause and how each one works and what kind of monitoring you may receive. Good luck and stay on here and find out more. Tilda xx
Hi welcome small blue pills are almost certainly 10mg amitripyline which are used for neuropathic pain and also aid sleep hence cause drowsiness ( take them no later than 930pm if you want to feel wide awake next day
Alison
Was looking at your symptons.. none of us on here are Doctors or Rheumatologists so we cant officially medically advise ,I am actually a qualified registered professional(pharmacy)
We offer general advice often from our own experiences and it is brilliant support network and some lovely people on her from a variety of backgrounds we do have quite a few nurses, our backgrounds are immense we have artists, teachers, engineers, security people, hair and beauty specialists, mothers, fathers , retired people, students, overseas members too, it is an all encompassing site.
The symptons could be caused by diabetes? or a neurological problem also? but Hopefully your medical professionals will get a diagnosis and start more pro active treatment.
I'm beginning to wonder if the diagnosis of fibro is a dumping ground for patients whith rheumatic aches & pains and stiffness but no swelling and whose blood results don't show inflammation or positive rheumatoid factor etc. I am most definitely not saying that fibro isn't real, it certainly is but I think a lot of people with Something Else may get falsely diagnosed with fibro too.
I agree that it is a very good idea to continue learning about the possible conditions you may have and the drugs too. That way, if things swing the 'fibro' way but you don't agree you will be equipped to challenge the diagnosis.
Yes, definitely. Fibro as a diagnosis is given out far too freely. If inflammatory arthritis is suspected and there isn't blood test confirmation or obviously swollen joints (that would point to RA) then they really should be considering spondyloarthritis as the next thing. However that doesn't seem to happen much at all. Spondy is sero-negative in all ways - none of the RF, ANA, etc tests come up positive, and in many cases you don't even get raised ESR or CRP. What does point to inflammation in spondy is that either steroids or NSAIDs (at full strength) give good response - NSAIDs should show noticeable change within 24-48 hours of taking, and pain then returns within 24-48 hours of stopping. If you are in the "sero-negative" camp or your rheumatologist is trying to tell you its just fibro, make sure you ask about other forms of sero-negative arthritis including spondyloarthritis and get them to examine you specificcally for that (which will also require examining down your spine at some of the enthesitis points in other joint areas).
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