Hi all, For some time now I have had problems with my feet and it seems to be getting worse. It is not too bad during the day but by evening it is driving me nuts. I don’t really know how to describe it but it feels as if I have ants crawling all over them, a burning sensation and they are so sensitive so much so that I prefer not to wear shoes in the evening. I can’t even wear slippers it is so uncomfortable. I don’t know if it is the hotter weather but it is not even that hot here. Is this the ms and any ideas? I have got a foot spa but can’t bear to put my feet in it. Mags xx
Oh yes Mags it’s MS and a problem which I have as well. 20 years ago I remember joking with a couple for friends that I had ‘sensitive soles’ as the soles of my feet felt so raw and shoes and slippers were hard to wear. Little did I know! The only thing that helps a bit is Amitriptyline. Actually I don’t know whether they lessen the burning, itching, crawling, buzzing sensations… or just zone me out a bit so I don’t care as much. Wish I could offer better advice… but I haven’t found anything else that helps. When a physio came to see me I had bare feet and said I prefer it, and she said many of her MS patients say the same… so we’re certainly not alone there. As with everything MS, I find my feet are worse when I’m very tired (hence they usually feel worse in the evenings) so once again REST improves them. Also I find keeping my feet up seems to feel better… so I use a recliner chair or lie on the bed. I couldn’t stand a foot spa and someone gave me a shower mat that had sort of bubbles on it to massage your feet… OMG it was agony!!! Like walking on hot coals! Hope it at least helps to know it IS MS and you’re not on your own. Pat xx
Hi Pat, Oh well, I did think it was ms so I am not surprised. It does get better with rest and it is worse the days I am working and the hot weather. I just thought there might be a miracle cure out there. Ok, I will just carry on with the bare feet and if anyone says anything I’ll just say “it’s the hippy in me coming out”. Mags xx
The way I could describe my feet at the end of the day is burning feet and it’s irrespective of how much I’ve been on my feet though it seems worse in hot weather. The only relief I get is by resting them, lying flat and usually watching TV. The higher the feet the better. In very hot weather I tried putting them in cold water, some relief but not a lot.
Hi Mags, Definitely MS ! I get burny, itchy, crawly feet too…sometimes legs, arms and back too. If it is really bad I take an extra gabapentin but to be honest I’m not actually sure it helps! One thing, along the same lines, that I get from time to time and it really sends me crawling up the wall is itching under my toe nails…silly little thing and yet its like torture! Nina x
Hi Mags. I get that, but on my thighs. They feel like they’ve been scalded, I can’t bear anything on them yet they have a really deep itch, don’t know how else to describe it. Drives me wild, nothing I can do eases it except medication. I take Gabapentin and Amitriptyline for it. It is nerve pain associated with ms. Mine is worse when I’m cold but we’re all different. Hope you get some relief.
Yes, definitely an ms thing, mine burn and are so sore evenings, I sit with my feet up, which helps a bit, but sorry I don’t have any manic remedy for it.
I do take amitriptyline at night, but the burning keeps me awake, but if I take more Ami I am like a zombie.
Yep, I have that, from the thighs down. It’s a sensation which is impossible to describe properly. Electrical tingling, crawling ants etc all come close but you know while you’re saying this sort of thing to a doctor that it doesn’t really describe it. I always assume that the neuros are used to the kind of language that patients use, and recognise it for what it is. I used to liken it to the feeling you get when you’ve had pins and needles and it starts to wear off. It always feels as though it will ease off in a few seconds, but of course it doesn’t. Sometimes I get added random jabs with a needle. Sharp enough to make me exclaim out loud. Then of course, the spasms. I’m sure my gabapentin does help. I often find myself becoming aware that my legs are bad, and then realise it’s gabapentin time. I can’t go bare footed though, because my feet are too sensitive to the bed clothes, or the carpet, or a cold bare floor, and they hate being knocked. I have to wear bedsocks in bed, even in this weather, to prevent them being upset by the duvet, or even by each other! Luckily Ruth makes me lovely bedsocks!
I used to call it vibrations. That’s what it feels like to me. I’ve got it all the time in my legs & sometimes creeps up to torso and arms. If I wake up with it all over I know I’m in for a bad day. Once, with a friend, I was in a posh deli and they had a big chest freezer on a wooden floor. Close to the freezer you could feel the vibration from the motor through the floor. I said to my friend this is exactly what I mean but the vibrations in legs. Kev I can’t stand bedding tucked in as it’s tight over my feet and I hate it. First thing I do in a hotel room is untuck the bedding!!! Pat xx
Me too. At 6’ 3" I often used to have to do that anyway, but now it is essential.
My feet are agony today in this weather.
Hope you get it sorted Mags.
I tend to get itchy feet, with ocassional numbness. But always on my left, which is my impaired side.
Hmmm this is one I suffer on a mild level hope it dont get worse now I have read tthis. MY Thighs get it worse than my feet but it soon passes or it did until now.
Hope you all keep cool. X Don
I suffered with a really sore hip for a long time. Convincing myself it was the beginning of a pressure sore as it’s the side that I sleep on but I couldn’t see anything there, neither could my partner or my carers. Following a nurse’s advice I placed a piece of sheepskin under the offending area as I slept and it helped a little. But then a GP prescribed me Amitryptiline for pain in my foot and the hip was better!
Trouble is the foot is still bad though! lol
i have posted for a long time due to my last neuro appointment back in march were I was told my mri was clear and so we’re evoked protental test and that I didn’t have ms. However my symptoms still remain and the worst being tingling, pins and needles, numbness and twitching in my left foot. This is driving me mad! I also get tingling and numbness in shoulders,around my mouth and occasionally in my pinky fingers. I was prescribed amatripoline for nerve pain and basically told to get on with it. I feel left not knowing what is causing these symptoms, it’s all well and good treating the syptoms but no one seems to be bothered to find the cause if all this. It’s been a year now and it’s not improving if anything getting worse. I’m currently having physio for muscle fatigue as walking esp stairs, hanging out washing,cleaning teeth ect is a struggling my arms and legs just burn or turn to jelly. My question to you all is, do you think I should push to have a second opinion? Could I still have ms with the clear tests?
Hi Julie, nothing worse than having symptoms and no diagnosis!
It is very difficult to dx MS with a clear MRI. As you know there’s no single test for MS but they put together symptoms, lesions showing on MRI and if they are still not sure, they do a lumbar puncture.
Lumbar puncture might be the way to go. After all it is known that lesions sometimes do not show up on an MRI… esp if the scanner is not one of the newest.
I would go back to GP if I were you and ask if you can see another neuro for 2nd opinion and suggest to that neuro that and LP might be a good idea. Or, if you can afford it, you could go private and see a neuro that way.
Another possibility is going for an ME dx. I say this because I was inititally dx with ME (which has symptoms very much like MS) and it was an ME specialist who sent me for a brain MRI that led to a dx of MS.
Just because lesions weren’t showing in March doesn’t mean they won’t be showing now or in the future.
So there are a couple of options to think about.
Also, some neuro’s will give a dx of ‘possible MS’ or ‘probable MS’ when all symptoms of MS are present but no lesions are showing and there is a clear LP. So seeing another neuro who might be more sympathetic is certainly worth a go.
Hope this helps you Julie. Wish you all the best. Being in limbo is a nightmare.
Pat has explained things for you, but yes I would be asking for a second opinion, especially if things are worse.
It is dreadful when you have symptoms but no explanation, fingers crossed for you.
Julie I’m with Pat and Pam. My lesions were small and only in my brain so I didn’t get a dx until they did an LP where they found bands and I had ms. Not what anyone wishes for but limbo is torture. The LP really isn’t the huge trauma some make it out to be, I’d have that again before another MRI as I find those awful, I need sedating.
Good luck, let us know how you get on please.
Hi Julie just found your post and I have similar symptoms to yours and they found 2 lesions on my brain ! But I didn’t meet the Mc Donald criteria and they have diagnosed fascialtion syndrome so frustrating so fee your pain! I have been bed bound for 4 days now due to numbness in legs and tingling , buzzing and twitching and my big toe does a river dance every now and again! I’m asking for second opinion and a lumbar puncture as I feel so I’ll! Not worked since May and also get vertigo and a squeezing sensation round my waist with muscle spasms which you can visibly see! I have been recording all the weird stuff and showed neurologist and he said just spasms and normal ! How are you now ?