Being tortured by Peripheral Neuropathy

Mat48

I don't know if this is due to RA because I currently have no swollen joints and no fracture-type pain. Just very, very sore with a fierce, burning and aching in my peripheries - which keeps me awake most of the night and leaves me feeling severely depressed by day - probably because I'm so exhausted.

I have been taken off Methotrexate - this week will mark the fifth missed dose of the drug. I was expecting to have some very nasty pain in my wrists and hands by now as I've experienced in the past, but actually I'm almost wanting the pain to distract me from this other thing - like this is the build up to a nasty cold that never actually materialises - I just want to get it over and done with - this painful burning really worse than anything as I spend my nights getting up to move around and moving feet and hands to try and cool them down.

I've tried Pernicious Anaemia, Restless Leg Syndrome and Sjogrens societies and forums but none of it quite matches my own situation and that in turn makes me feel more isolated.

Basically I feel as though I've been injected in both hands and feet with acid and it's eating my peripheries and spilling into my arms and legs. When I google this I always get diabetes as the main possible cause but I've been tested recently and it seems I don't have diabetes. I have also been tested for B12, had GP do nerve conduction tests on my legs and feet (found a lack of sensation but nothing affecting my central nervous system). I feel as if I'm going into horrible meltdown now. The only way I get a night's sleep is with Zopiclone and I don't want to get too dependent on this addictive sleeping tablet.

RA wise my feet are increasingly tender - especially my achilles tendons and the joints at base of my toes - and knees. shoulders and elbows and wrists all ache and tingle badly now, especially at night, but none are swollen and the stiffness I experience is just the usual I have had since RA started - no worse than normal.

I see my GP again tomorrow morning. I feel completely at my wit's end with this but don't know what to tell him or what he can do to help me?

stickywicket

Sorry, Mat. It sounds nasty but is nothing I've ever experienced. I hope the GP can help.

villier

Oh Mat my sympathies to you, I know exactly what you are going through, I have a very rare neuropathy which I am still undergoing tests to find out what has caused it. There are a lot of underlying causes that can cause neuropathies some drugs can be the culprits as well, a lot are also idiopathic. I take it you have been referred to a neurologist?

This may or may not help I soak my hands and feet in Epsom salts dissolved in luke warm water it helps dampen down the burning a bit, everyone's different but it is very cheap to buy maybe worth a try.

I get IVIg treatment for mine as over the years have been tried on all the neuropathic drugs but they didn't work and of course things have also got worse over time. Mat I hope you can get some meds for this soon that help, I get the burning throbbing pain also electric shooting pains over my body as well debilitating is not the word for it, keep us informed how you go, sending some ((((())))) hope you get sorted soon...........Marie x

Mat48

Thanks Villier - I don't know whether its consoling to know that anyone else is going through this hell as well. I really wouldn't wish it in anybody else just so I can be kept company! Is yours attended by any type of inflammatory arthritis or OA perhaps?

I will try the Epsom salts tonight and hope my GP might refer me to a neurologist at last when i see him tomorrow, but I'm scared he will dismiss my issues as just anxiety and don't think my rheumy will consider it to be RA related either as no joint pain or visible swelling this time. I will ask for my ESR to be taken too. Just hope I don't break down and become a blubbing wreck because he's really not the sympathetic type and all this depression just is not me either. I can see why they use sleep deprivation as a form of torture now. I've never been a good sleeper but currently surviving on 4 or less hours a night. X

stickywicket

Mat48 wrote:

don't think my rheumy will consider it to be RA related either as no joint pain or visible swelling this time.

It might not be RA related at all, Mat. We do tend to assume that things are, but this could be something entirely unrelated. Not a nice thought to think you have something else going on also but better that than barking up the wrong RA tree.

trepolpen

hi Mat , looks like it can be caused by RA & problems that goes with RA , look it up on wiki

find TENS machine helps lots with it , just seems to make the pain a lot more bearable , they can refer you to a pain clinic & sometimes they will supply them , I would talk to your GP & maybe your Rheummy nurse & ask them

villier

Mat I have OA not related, my ESR is always sky high but the Rheumy is blaming it on the IVIg, I have been getting tested for Sjogrens my Neuro is positive that's what is causing mine but the Rheumy is sitting on the fence I go back in December for more tests.

My nerves are damaged at the roots at the dorsal root ganlia which means they cannot regenerate, some nerves can regenerate it depends where they are damaged and what is damaging them.

I don't have any swellings or the like in any of my joints yours may not be related to RA either. Here's hoping your GP will refer you to see a neurologist and may give you amitrip to take meantime that may at east help you sleep.

Mat48

I'm not thinking this is RA related SW. It doesn't feel like RA as I've experienced it to date anyhow. On the other hand when my DAS was high and I had swollen knuckles and a high ESR everyone (doctors) assumed that the neuropathy that came and went was RA related to I just assumed they were right.

Now I find myself wondering if anything at all is RA related or if I'm just going horribly nuts/ having some sort of mental breakdown? Which comes first - the chicken or the egg is what I'm asking myself and the GP I suppose. Surely the methotrexate would have left my system enough to see RA return and neuropathy fade after almost 5 weeks? I guess what I'm saying is that its taken me two and a half years to come to terms with the idea that I have RA - and now I'm more terrified of this turning out to be something else entirely? Better the devil I know really - this feels way more insidious and sinister. X

Mat48

"I don't have any swellings or the like in any of my joints yours may not be related to RA either. Here's hoping your GP will refer you to see a neurologist and may give you amitrip to take meantime that may at east help you sleep."

I have been taking Amitriptyline on and off for a few years Villier - I've decided to stop taking it because its no longer sedating me enough to help with insomnia and I think it might be causing these very black waves that keep on coming so thought I had better stop until I see my GP and explain this to him tomorrow. I know Amitriptyline is used as an anti-depressant still occasionally but at 20mg i'm it could be actually causing the black moods so it says on the sheet?

I didn't think that you could get a high ESR without some form of inflammation so I'm a bit baffled for you? Have you been tested for Pernicous Anaemia and a form of Vasculitis called GPA (Wegener's Granul.. Something?) I wonder? This is rare but might explain some Sjogrens like features such as dry eyes and sore ears and nose sores and bleeds (I seemed to get these a lot more since RA/ Methotrexate.)

My rheumy asked GP to re check my ANA and previously positive rheumatoid factor 3 weeks ago - guess I will find out if they've changed tomorrow. GP said this was to check autoantibodies that might be crossing over with existing connective tissue disease/ RA. He suspects there will be nothing very new about the results though but think rheumy must be considering Sjogrens for me too.

villier

When my Doc prescribed amytrip it did absolutely nothing for me, maybe is it that, that is giving you the black moods or it could be the neuropathy dragging you down you were probably right in stopping them.

According to my Rheumy she sees a lot of patients that are getting IVIg with high ESR she doesn't seem to be bothered about it. I have had every test done under the sun you name it I have had it done, my ANA came back weakly positive, I also had a lip biopsy done which came back borderline positive and the schirmer test I got done only one eye was dry, I have to get another one done before I see her again in Dec.

Apparently Sjogrens can go hand in hand with RA and also with the neuropathic condition I have, it sounds as if your Rheumy could be testing for Sjogrens, good luck for tomorrow and let us know how you get on.

stickywicket

Mat48 wrote:

Surely the methotrexate would have left my system enough to see RA return and neuropathy fade after almost 5 weeks?

As with so many things I guess the answer is 'It aint necessarily so' :roll: I've given up the meth for longer than that pre-op and I was surprised how well I did without it. I think the longest was 12 weeks. It was biting at the end though

dreamdaisy

When we start these meds we are told that it could take between 2 - 12 weeks before we see any effect and the same applies in reverse. DD

Mat48

Thanks both. Something is seriously biting now but it doesn't feel like RA it feels like severe flu without the flu? Sorry making no sense at all - by GP said to give it a few weeks and its been 5 - but then he's only a GP no expert on Methotrexate. I trust you guys any day over him re these drugs! X

frogmorton

Hi Mat

I was wondering where you were only the other day, but I am sorry to see you back feeling so rough

You sound to be having an awful time at the moment and I wish I had the answer, but I don't so I will just offer my sympathy and support.

I have read your thread from beginning to end; others' posts together with your symptoms make very interesting reading :? . I do hope that you get some help very soon and everyone else too.

love and ((()))

Toni xxx

Mat48

Thanks Toni. Yes it is awful just now I admit. I have what feels like a headache across my whole body today - joints and muscles. But still no sign of visible swollen joints or any real impact on my range of motion as I have had with previous RA flares - just a hideous migraine in head and the rest Of me.

I am not sure what IVIg is? Will just look it up. Waiting for paracetamol to kick in. X

Mat48

Just looked up IVIg - have never heard of it before? Does it have to be administered in a hospital or can a GP surgery administer it?

Boomer13

Hi Mat;

Sorry you are experiencing such torture with this just now. I haven't been on here much lately because of my own flare of neuropathy these days.

It's really troubling when you don't understand what is causing it, yes? I agree with you, I would much rather descend into a miserable bout of joint pain. Mine too involves a migraine-type experience too but I have more muscle problems and less of the burning you describe.

Perhaps gabapentin, lyrica (pregabalin) or one of the other drugs for neuropathic pain might work for you? I have had my gabapentin dose upped and with a muscle relaxant added on, it's a least making my wait for additional testing a little more bearable at the moment.

Hope you have luck getting some relief.
(((())))anna

Mat48

Oh Anna I'm so sorry your plight continues. I hoped you would come onto this thread and say that yours has gone or settled down a lot. I'm in such pain just now I find all I can do is lie in bed in a state of burning fizz and horrible neuralgia everywhere. Husband is resting prior to a nightshift and son has just come home from school. No one up to get his tea or chat but I can't move for pain right now. I think I will just have to tell my GP exactly how I'm feeling and hope he sends me for tests and puts me on something effective. Maybe its a backlash from coming off the methotrexate and now the Amitriptyline - also from a long drive to and from university down in Stirling where I've just deposited my middle son. It was six hours behind a steering wheel after a 2 hour boat journey each way. Not great while all this neuropathy and insomnia and lack of DMARD is happening but had no choice but to take him down myself. Its all just a bit too much really. Will let you know what GP says tomorrow.

Take care X

Boomer13

That sounds bloody awful, Mat.

Mine started to flare ~12 days ago. It's been pretty well controlled for so long, I'd forgotten how absolutely bloody horrendously @#*&#!$% awful it is! Nuf said.

Take care,
xxanna

PS I'm back to the doctor tomorrow too. At the moment I have no idea what I'm going to say as I feel like a blithering idiot. Pocket duties for both of us? A.

Mat48

Definitely pocket duties Anna! I'm not even letting myself take an ibuprofen tonight because last time my full blood count came back saying my ESR was only at 28 and on that basis the rheumy said no active RA presently - but three weeks earlier it was twice as high. I took ibuprofen max dose all week in run up to this yearly apt for guess what? Yes that's right peripheral neuropathy and a bloody lousy headache! Not making same mistake twice. Hoping that this all turns out to be RA of a more systemic nature rather than something neuro or never to be identified. Tell me how you get on in your own"blithering state" for your apt tomorrow too please. Xx

villier

Hi Mat, I get IVIg administered on a hospital ward every three weeks, if it turns out you have a neuropathy problem as Anna said they would start you off on Gabapentin or Pregabalin to see what one helps control the pain, there are quite a lot of meds they can try you on unfortunately none worked for me IVIg is more or less a last resort for me it helps keep the pain bearable at rest.

You would have to undergo quite a few tests to see what nerves are affected ie small or large fibre also whether it was non length dependent or length dependent, here's hoping it has been the meds that has caused it and the nerves can be repaired. If you have any questions to ask PM me and I will be more than happy to try and answer them..........Marie x

Mat48

I'm very grateful to you both, Marie and Anna. I never thought that I'd be on an arthritis forum finding I am sharing such a bizarre set of symptoms with two other people, but its such a relief to not be completely alone with this oddness too.

My GP did a basic nerve conduction test and found some sensory loss in my legs. He then told me I must not take MTX anymore in case it caused long term nerve damage but insisted there was nothing wrong with my central nervous system at least. Sorry if I've already said all this here on this thread. I'm using little iPhone so can't scroll back easily.

He said it wouldn't be something I would have a CT or MRI for because nothing would show up. He just felt it must be the methotrexate - and looking back I think he must be right. The rheumy isn't convinced but Perhaps he just doesn't want to accept that a gold standard RA drug could cause this problem even though it is listed as a possible side effect?

On the NHS chemo drug and peripheral neuropathy page I found it did say that for about 50% of chemo patients who get this side effect, peripheral neuropathy goes away - but for the remaining people it can sometimes cause permanent or more lasting damage to the peripheral nervous system. I know I wasn't on MTX at a high dose compared to cancer patients but if it can cause this reaction in some patients then I guess 18 months of it might put me in the same category as them. So I hope its active RA because this drug was good at controlling my RA and I hate the idea that by taking it I've inadvertently poisoned my body to such an extent , but failing that I hope its MTX that's the cause. All the tests and therapies such as IVIg sound even more grim to me. Poor you Marie. Mat xx

villier

Mat only too pleased you have someone to talk to that understands the weird sensations that are happening in your body, I am eight years down the line with this and it is a part of me now, just like everyone on hear with RA, PsA etc.

I would put money on it that it is the MTX that is the culprit for the neuropathy, the literature that I have read in the past unfortunately states that damaged nerves that can regenerate do so, but slowly i'm afraid, I can only hope that whatever meds you are given will help keep the pain at bay.

Good luck for tomorrow hope you get something sorted out, please let me know how you get on..............Marie xx

Mat48

I will thanks Marie.

Starburst

Hi Mat,

Sorry you're struggling so much. You say you haven't seen a neurologist but have you definitely been diagnosed with Peripheral Neuropathy? If so, have you tried any medication like amitrip or gabepetin and even if not, is that at option for you?

I hope you can get some answers soon.

Mat48

Thanks Starburst i've tried amitrip for the past few years and am off it just now because I've been getting such black moods lately that I thought it might be the cause. Don't think it is though - think exhaustion is the cause and possibly a slow return of RA too. But will see what GP says tomorrow. The GPs seem to think it's classic peripheral neuropathy and are fairly sure that Methotrexate is the cause - having ruled some other obvious stuff out. But may know more tomorrow re other secondary autoimmunities like Sjogrens. Mat x