Update - skin biopsy results and worsening of nerve pain
 

I've been flaring like mad ever since recovering from a bout of pneumonia a month ago. My sed rate went back up to 58 - not my highest but usually an accurate reflection of how things are with me.

My jaw, wrists and hands, knees, shins, ankles and feet all have intense toothache like pain - which I'm told by my GP must be my RA because it's in the area surrounding my joints so must be a type of rheumatic neuropathy. And yet I can move most of these joints without too much stiffness and have no swelling or boggy joints that are the hallmark of RA? The pain is severe and widespread but is almost entirely in the nerves surrounding my joints and this includes my jaw pain.

He also explained that my skin biopsies from my calves have come back normal so he says this shows that the neuropathic pain is not causing my nerves to die and is therefore not a true neuropathy - or not a progressive one at least.

I'm not entirely confident about the reasoning behind any of this I have to say - but started Imuran two days ago at the lowest dose and so far have had no unpleasant side effects.

Does any of this make sense to anyone here? I have tried Amitriptyline, Gaberpentin and Cymbalta but had adverse reactions to each of these so am now relying on max doses of Codeine, Paracetamol and Naproxen - which are causing chaos to my innards!

Are you seeing a specialist, from my understanding a gp would be equivalent to a pcp(primary doctor) in the states. nerves dont need to die to become neuropathy, if nerve destruction is present, such as (shingles), you would feel neuralgia and then complete numbness. paracetamol is a weak anti-inflammatory against something like yours.
i am curious what kind of pneumonia was it, bacterial, viral, or idiopathic?
is the sed rate, based on per hour?Most likely you have to see what imuran does with your symptoms, if it relieves it, ra is suspected, if not, then its not ra.

Did u only get a biopsy from ur calf? What if it's nld? Wouldn't they need to so ur thigh to say there is no neuropathy?

Also, what is the diff between neuralgia, neuronapathy and neuropathy? Can all three be picked up on an emg/ncv and skin biopsy?

I have been under a neurologist but my main specialist is a rheumatologist. He says he thinks I have a small fiber neuropathy as part of my RA. He never wanted to investigate it further - was content just to call it mild and expected my GPs to prescribe some of the anti depressants and anti convulsants and wait until the joint swelling and stiffness returned in a way he could identify as active disease. Then I would have been offered one of the biologic therapies having failed three DMARDs to date. So I was off methotrexate for two nine month periods and also had spells on steroids. My ESR continued to fluctuate according to how I was feeling and how long I am off disease modifying drugs for.

I pushed my GP to refer me to the neurologist who feels he has ruled out anything more dramatic than mild small fiber neuropathy. I had nerve conduction tests, MRI of brain and cervical spine, serum blood tests for many things including Lyme, a lumbar puncture which was partially contaminated but they felt they got enough to rule out MS at least. And now the skin biopsies have shown up clear. I agree these weren't really length dependant as I would have preferred but they were out of their depth with me although they can't admit this of course!

For the past two years most of the pain appears to have been in my nerves and tendons rather than in my joints. I was briefly treated for Raynauds which they thought could explain the "tingling" but developed Erythromelagia and severe swelling from Nifedipine so this was stopped.

My pneumonia was only in one lung and came out of influenza A so my GP thought. It didn't show up in a chest X-ray so I think the two lots of antibiotics sorted it out but I've been left quite hoarse for months and as soon as my cough and flu symptoms started to die down the neuropathic pain returned with a vengeance. My GP feels hoarseness and TMD are part of my RA. I also have vestibular issues no one can account for which are really disabling me a lot of the time. I feel they are not seeing something but they have been quite thorough and this is the NHS so what can I do?

The parasthesia is bilateral and stretches the length of my entire legs and also affects my hands and arms. The main sensation during the day is of an unpleasant wetness from the feet up with pricking of skin. By night the pain grips my feet, ankles and shins and it's like being tortured with electrode stockings.

I always expect to find a rash but in reality nothing is visible. I have completely lost my sense of taste and smell, have periodic sores and bleeding from my nose and suffer from dry eyes. I think this may well all be Sjogrens related but last time my antibodies were checked about 18 months ago they were equivocal - negative ANA, Ro and La. So it would have to all be seronegative.

I do hope that I can tolerate the Imuran and that it works. For a while the neuropathy was thought to be a result of my two years on Methotrexate or Plaquenil but as it got worse after stopping these we stopped thinking this was the case. The fact my sed rate fluctuation corresponds so clearly with my neuropathic pain suggests to me and to my doctors that the neuropathy is part of the inflammatory process for me.

Does all this make sense more now? I don't really feel I belong to the world of arthritis much anymore but it seems they think I do. :confused:

Psoriatic arthritis typically attacks the tendons near the joints, and therefore is a bit more difficult to identify.

You might want to discuss this diagnosis with the doctor. Some people develop this BEFORE skin psoriasis develops.

http://www.webmd.com/arthritis/psori...ritis-symptoms

Thanks Mrs D. I have long wondered if I may have PsA rather than, or as well as RA but my rheumatologist has never mentioned this idea - he sticks to RA because of the hallmark early synovial swelling. I do have a long history of eczema and alopecia but have never had any psoriasis - not have I a family history of this autoimmune skin disease.

However I recently learned that a first cousin was diagnosed with either RA or PsA a few years ago - probably PsA minus the psoriasis - on the basis of allergies to hay and many other things. Her back is very badly affected by sciatica and her hands are getting steadily worse she says. She also has vestibular issueslike me plus severe fatigue. I have a friend who has PsA and suffers from neuropathy, dizziness, tinnitus and severe arthritis but she does also have psoriasis. I agree that it would explain a lot about my symptoms though. Mat

Just curious...did you get the actual results of your skin biopsy? If not, you should, just to see what (if any) notations were made in regards to morphology/condition of the fibers. Also to see what percentile the density is at and whether it is borderline. Doctors are quick to just report a 'normal' finding when in fact that details of results can be more telling.

They believe I now have psoriatic arthritis...with a SED rate of 100 and migratory swollen joints (fingers and now knees) and achilles tendon problems. I also have confirmed bone marrow swelling in the sacro-iliiac joints of the hips which is supposed to be another indicator. But it's a process to get a confirmed Dx of Psoriatic Arthritis without the psoriasis (although I did have a rash with the last swelling, but they didn't assess it). But I can say that most of my joints hurt and my neuropathy pain has been worse in the last 6-9 months since the joint swellings started.

Gosh ESR of 100 is high!! We are the other way round because my poly arthritis started four years ago and lasted about nine months until it settled firmly in my hands and wrists and I was diagnosed with RA as the type of swelling is quite specific apparently. The thing about PsA is that it tends to respond less well to conventional DMARDs - so the criteria for Biologic drugs is easier to meet with PsA than with RA here in the UK - although these criteria are still pretty strict because of the expense for the NHS of Biologic drugs.

I may or may not be brave enough to ask my GP for print offs of my skin biopsy results. If we do move away I will definitely ask so I have these results in hard copy for the next GP practice and rheumatology team and for myself of course. I've given up expecting anything to show up now. I see a surgeon about my GI troubles a week today and I'm sure I will have endoscopies and scans and still come out none the wiser. This should be a good thing of course but for me and many others uncertainty/ symptoms without diagnosis is much harder to deal with than certainty no matter how bad. I have to know what kind of lemons (if lemons or perhaps grapefruit?!) I have in order to make the lemonade! :wink:

We have some common theads. I have wet warm sensations in my legs and feet (and all over my body). My feet will sometimes burn when exposed to temperature extremes. I had a negative skin punch (ankle/ & thigh) in my leg as well. I however have loss of temperature sensation in my arms.

It is very frustrating to have such significant burning symptoms and have a normal skin punch biopsy.

Mat52
Hi - sorry I can't offer much help on sorting out your diagnosis but some of your symptoms are familiar and thought I'd pass on what has worked for me.
Periodic sores - so long as they are not ulcerated - I use Vitamin A ointment or cream (the cream is easier to use in cold weather) I found out this was what the nurses in hospital were using to treat bed sores. Should be available OTC at your chemist - very cheap. If they say they don't have it ask them to look in the baby section.
Nose bleeds - if they are small and due to vasculitis - I was prescribed 'Foban' (Fusidic Acid) - use sparingly (too much goes back down your throat and tastes yuk! - I apply it with a cotton bud) Also works on dermatitis.

All the best for getting your diagnosis sorted.