The numbness and tingling in the legs and soles of the feet also hands has been with me the whole trip years before diagnosis and may well have been a very early warning sign of PMR. Having eliminated nerve and sensory stimuli and established my reactions are good the only option is fluid retention which does feel right. The fluid swelling my legs now was not so evident in the early days and may have just been in hands and feet. It felt sponge like and numbing . It’s worse now being in the legs but when it drains and reduces the effect is less and I wonder, if I manage to clear it will the numbness also go? Won’t know till then, but it could be a very early warning symptom for PMR to look for in some people. Anyone else think this might be so?
Early Warning Symptom Perhaps?: The numbness and... - PMRGCAuk
Early Warning Symptom Perhaps?
I think RS3PE syndrome may well be a sign in advance - but not sure if it is associated with neuropathic signs and symptoms. The literature insists it is a rare occurrence - but I suspect it isn't half as rare as they think, just not recognised.
But it responds to low to moderate dose steroids - so if that is what you have, it should be well controlled at the doses you have been on.
I too have occasional numbness in my legs, that feels like fluid retention, although there’s not much to see. I tend to put it down to fatigue but I’m sure that’s not a very good explanation! The truth is I have no idea why it happens……I have had nerve and sensory testing and nothing was found 🤷♀️
The retention make the joints feel stiff, hence stiffness, and as it increaes during the day the leags feel heavier and harder to move easily. Elevating them and especially a hot bath with them elevated drains the fluid substantially to near normal and overnight sleepthey are nearly back to normal by morning, ready to start all over again. As the flare is gradually getting under control the legs feel better each morning. there is a real correlation between inflammation and the fluid. In the very early days there was no visible swelling like now but there still may have been enough to cause the numb, tingling feeling I put down to a nerve disorder. Clearly not so from the tests so only fluid retention lymph system is the main suspect.
Pretty much the same as me cycli - although I didn’t really put the stiffness/numbness down to inflammation at first - but now I think of it, it does correlate.
Unfortunately I’m too stiff to use a bath (it’s showers all the way for me) so a nice warm soak is out of the question. I’ve had that for years though - osteoarthritis of hips and shoulders 🤷♀️
think the stiffness is definitely down to fluid retention. The more you can drain the easier the legs move. Fluid around joints is a protective device to stop damage, but when there isn't damage it is just an impediment that if we could clear then the legs would respond better.
What about putting your feet up at intervals during the day? I pounce on anything that improves things. I hope it passes soon, great that it’s improving. Understanding a symptom is half way to alleviating it. My feet burn in bed at night - acidic food, drink and especially wine all had to go. Much, much better.
Hi SJ 😊
I have a footstool that goes with our sofa and use it every time I sit down (which is often!). When I’m away or at a friend's house I really miss it…
‘Put your feet up’ is excellent advice, for me anyway 😊x
the elevation actually needs to be above the torso so lying lengthwise on a sofa amd raising the feet on the arm works well. This helps the heart when it pumps and the lymph system in clearing the fluid. Takes about an hour with gentle rotation of ankles and lower legs. My mobility exercise no1 does this nicely.
I do elevate during the day. It helps. I am trying to keep the legs as near to their best state as that gives me a measure of how bad they can get if that makes sense. If I can retain their proper shape there's hope.
I get numbness and tingling but only in my right leg. It started a few month before diagnosis. However I've been told it's due to spondylitis in my spine and possibly nerve damage in my hip. Walking brings it on and it keeps me awake at night.
Do you have any fluid retention Broseley? That's thekey to mine I think. I'm certain there are many reasons for this numbness but in my case I am becoming convinced it is tied to fluid in the lymph. Could be wrong but it would explain a lot.
Just a side note, too much Zinc can cause extremity numbness. If you take supplements as I do look for the total Zinc content in all of them. I have on occasion been caught by not looking at the minerals in supplements closely enough.
thank you. Will check, but this was before any madications at all and continues. I'm still betting it is an early indicator for some who have PMR or GCA but struggle on with it while it gradually takes hold why we try and manage the symptoms, thinking them caused by something else.
Hello cycli,
I realise this is a year down the line since this post was in action but, because I became interested in your recent post entitled 'Have a laugh. Premonition?' I decided to check out your profile and then the questions you've raised. Boy! have you been through it...quite unbelievable that you survived, frankly (referring particularly to your accident). You are something else, as they say🤗
The reason I'm contacting you on this particular post is that I'm wondering how you have been faring with what you describe above. Just to quickly explain: I had no tingling in feet, legs or hands before I was diagnosed with PMR in March last year. Admittedly I have had a slightly strange feeling in my feet for some years, which I put down to peripheral neuropathy but that's all.
After a few months of Pred, I noticed that my socks left an indentation on my legs when I took them off at night and there is no doubt that there is fluid retention in my legs and knees. I have had pain at the back of my knees for some time now too, since being on Pred, plus when I tried to reduce to 7mg, my clinician suggested I up it to 10mg because the tingling in my hands plus pain in my wrists was becoming a real problem.
Sorry, that was meant to be a quick explanation🤔! SO, all that said, have you been able to reduce the fluid in your legs or, at least, find out what's going on? As I say, I would be interested to hear your progress.
Tempus fugi (t)
Hello to you tempusfugi. No problem. You too seem to have your share of woes. I was lucky, but it was that which likely catalysed my present condition. Final straw so to speak.
Currently I have a much improved fluid retention status, but it is still present Numbness is still present and balance badly affected. Bursitis isn't helping. Like I have said in other posts I believe that the retention is because the lymph system cannot adequately remove it either because the heart is weaker, or the blood cannot transfer it properly, or because the exercise and activity is no longer at a level to help it function properly. In short that is one of the questions my project will seek to answer. Certainly pred. has influenced this through myopathy alongside balance which is also a side effect. I don't have theanswer but am still looking and questioning. Hopefully we will find some answers if my guesses are in the right area.
Good afternoon cycli,
Most grateful for your response. I am glad to hear that you have a much improved fluid retention status, albeit still there. Sorry to hear though that numbness persists and I am interested to see your point about balance because recently my balance seems to be a bit all over the place (like me)! This is something relatively new in my PMR journey so I shall have to see how it goes, I guess. Bursitis is extremely painful, I believe.
Your other observations are interesting, too, so I will watch out for future posts from you on how your project is progressing. Thanks again.
PS and thank heavens for this forum✌️
echo your comment. Inspirational to be able to share our experiences and thoughts on here. Having met and become friends with Jinasc one of this groups founders I can only express my gratitude to them for setting up the charity.
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