many on this forum mention pins and needles in hands and feet, burning feet, lack of hand or finger sensitivity in touch, but what do experts think causes this? The inflammation of the disease we have? or the Preds? or high blood sugar ( even if blood tests do not show diabetes)?
chemistry of neuropathy in feet and hands - PMRGCAuk
chemistry of neuropathy in feet and hands
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Bennijax
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I had tingling in the ankles before I was diagnosed and before any Prednisone. Probably PMR related, but I don't know how.
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everydayhealth.com/neuropat...
is an article listing 10 different causes of neuropathy. It includes autoimmune disorders - which can have an effect in more than one way. They can directly attack the nerve cells and cause damage or they can cause vasculitis which affects the blood supply to the nerves and they are damaged as a result of that, Unfortunately, once nerves are damaged they don't recover well.
They mention chemotherapy - but longer term use of several drugs otherwise can result in neuropathy, pred doesn't in general although there is a rare form of neuropathy where steroids makes it worse, they don't cause it though. Leflunomide can lead to neuropathy developing.
Low B12 levels are a common cause - always worth getting that checked. And diabetes so keeping a close eye in the Hba1c when on pred is advisable.
Thank you for this, it was very interesting. I have motor neuropathy but not a lack of sensitivity and have been tested for Charcot Marie Tooth syndrome as my sister has this - and we both have PMR. Unfortunately the consultant told me that the results of the CMT test might take a year! There is no apparent treatment but it would be good to know. Burning feet and legs are also symptoms which come and go.
Genetic testing always takes ages ... So frustrating.
In the meantime are they managing you as if it is CMT?
It took 2 years to get to the point of having the CMT blood test as apparently it can only be ordered by a tertiary consultant, and the management consisted of referrals for orthotics and neuro-physio neither of which have materialised yet. It was complicated by a history of spinal stenosis (I had L4/L5 laminectomy and decompression) and of course the PMR, which after 6 years is now down to 1mg a day.
FYI - my GP will not have it that PMR is an autoimmune disorder!
🤦🏻♀️
cannot see your emoji? x
picture of disbelieve!
I know - she says it is vascular and now that EM and raynauds are too, which they are of course but also are AI possibly?? Its difficult to say the least - she is very good in many ways and so I try to ignore that bit x
But who says it says it can’t be a mixture of both ?
Thats what I meant
Wouldn't be mine!!!!! Who is a GP to diagree with the majority of specialists in the field - and yes, I know some of them agree with him. What does S/HE think it is then?
However, it is either autoinflammatory (which is very rare) or autoimmune which is less rare - or it could even be a mix and to be honest, to me that seems not unlikely.
autoimmuneinstitute.org/aut...
and if you like lots of long words
Hi Bennijax
I have a condition called Erythromelalgia which causes burning feet, hands and sometimes other body areas.
It was not well known when I was diagnosed over 40 years ago so that may have changed by now. There aren’t any blood test etc for this but it might be worth talking to your doctor to check it out.
It’s very distressing as your feet feel as if they are on fire and get very red.
This doesn’t address all the other issues you have but may be an aside.
Just a thought.
I have Erythromelalgia too, and in one foot more than the other, one hand on same side as affected foot worse than t'other one. Bothers most during the night, when it's quite unbearable. Only came on about 9 months into treatment for GCA & PMR. Received a blank stare from GP, but I'm used to those by now. Have had Type 1 Diabetes 41 years.
so strange that no one has mentioned that to me !!! I’ve had burning feet .. and knees at night for months now. Rheumy thought connected to nerve in lower back and suggested a Gabapentin before bed. She said back xray was not unexpected at my age! 84. Think it has helped a bit. Still had to wrap feet in cold wet scarf last night though!no cure. ! And not concerned at this very cold right foot… at times in day . Bit dismissive actually!!
The eyes and voice of my gp tend to 'glaze' over when I try to tell him the sympotoms, and I think they know this area is both subjective (how does one prove what one is experincing when there are no direct tests), and very difficult to cure anyhow.
I think mine was worse at high doses of Pred. It's still there at a lower dose but not nearly as bad. Hate having illnesses on top of illnesses that have no cure - I seem to be heading for the full set. Good to know we're not alone though & can rant a bit on here.😉
I didn't have the sensations I have now when at 8mg; I had to go up to 15 over Christmas and have found it very challenging to taper down since then, although now at 11.5. I was wondering if others had more of these sort of sensations at higher than usual doses so thanks for your reply.
I had to increase myself from 7 mgs to 13 mgs to deal with a flare twelve days ago. Now trying to drop back down - second day at 11 mgs and still having some pain but hoping to try a further drop in a week. My left foot was extra hot & red a couple of nights ago - just hope it doesn't stay that way for long. 😟
I hadn't heard of this - my bottoms of my feet feel like they are burning, - I run very cold water over them - but they don't actuall become hot to touch, or red. Odd.
My feet became red on the soles and toes with a hot sensation at night or after walking a bit in snug shoes. This happened after PAD diagnosis, impaired blood flow.
There is an association called TEA which is the Erythromelalgia Association, if you type the Erythromelalgia association into your browser, you will find a lot of information. I was a member for over 30 years but have not kept up for a while. Most Doctors have no idea what this is. I was lucky that I had a doctor who had been in a department that dealt with this. I hate to say I have only found that putting my feet, hands into a bowl of cold water helps. My face, thighs knees burn. I could go on and on as to what this is but don’t feel this is the forum for it. P lease check out the tea website.
I have tingly hands and feet and this has been put down to peripheral neurpathy as a side effect of taking Leflunomide about a year ago, but I think I've had it before then. My blood sugars are also high-ish around 50 but it's not likely to be diabetic neuropathy. I remember when I temporarily came off steroids about 5 years ago I had very tingly hands but tests for things like carpel tunnel were negative. So for me it does seem that PMR affects my feet and hands, my puffy feet are definately responsive to steroids
note my diagnosis is Stills Disease which for me manifests as rheumatic Disease and is considered an autoimmune disorder of which I have two other associated conditions as many of us do.. Yes I have all the symptoms you mention and attribute them to my chronic condition. Bizarrely I find the stamping hard as if in a tantrum and flinging my arms around gives me relief or perhaps distraction. A recent untreated severe muscle rupture in my lower leg which went untreated due to lockdown now feels like it has snakes writhing around inside and sometimes is so sore I can’t even touch it so that’s put a stop to the stamping and hopping is out of the question due to hip pain 😆 these things are send to try us!
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