I haven’t posted for a while. I am not diagnosed and am being referred for a 2nd opinion to Southampton, which is in June. I have several symptoms, my first was ON in March of last year, followed by TN in September of last year (although my old neuro didn’t accept that I had TN!!). I have constant buzzing/pins & needles in both feet, lower legs amongst other things! I have loads of lesions on my brain and have been diagnosed with CIS (as I say, the neuro didn’t accept that the pains in my face were related to a relapse or to MS).
In December, I woke up one morning and my feet were so sore. This has got steadily worse and now I have painful feet if I sit down for a long time and then get up. The pain is on my heel, around the sides of my feet and in the bones of my toes. Its really hard to describe! When I get up to the loo during the night/early morning, I can’t walk properly on my feet. I am unsteady and have to take it really slowly. It is the same when I eventually get up. It takes me ages to get down the stairs too.
Does anyone else get this? I have put on a bit of weight since I got ON, but nothing horrendous. Could do with losing about a stone I guess. I told my MS nurse in December, when I first got it and she just told me to up my pregabalin. I have increased it to 150mg at night and 100mg during the day, but am reluctant to take more during the day as I am increasingly feeling lightheaded/dizzy.
Are you the same Ness I used to talk to? I get confused, you know!
I’m not sure if what I have to say will be very helpful, as I too have chronically painful feet, which my neuro thinks is unrelated (even though I’m diagnosed!)
So a bit like the reaction you got, about your face!
I’m absolutely positive the foot pain must be to do with MS, as it makes no sense to me that I’m getting all these pains caused by NOTHING all the time! But you can’t tell him…
Honestly, the foot pain is my worst thing. I sometimes wonder what’s the point even talking to the neuro, if he’s going to keep insisting it’s unrelated.
This isn’t helping much, is it?
Perhaps it at least helps to know I share your frustration about the dismissed symptoms.
Ok I agree that people need to be careful and not blame everything on MS as it could be something else causing it.
Maybe I’m being daft or something but MS affects the nerves and nerves are everywhere in the body including the feet!
I also have exactly the same as you described above x
I had a severe deep ‘nervy’ feeling pain on the outer side of my left foot below my ankle when this episode started 2 months ago - I also had the same kind of pain in the ball of my foot intermittently that made it really difficult to walk. It lasted a couple of weeks then eased off.
Then the pain started along the length of my outer lower leg - again the same deep ‘nervy’ type pain - more recently this pain is also running down along the outside of my thigh. It’s a horrible pain - you just don’t know where to put your leg.
Basically it seems to be following a particular nerve path. I get similar pains in other places too but they tend to come in short sharp shocks x
I’m also about 1 1/2 stone overweight but there is no way that you could blame these horrible symptoms on that - I think you’d have to be 20 stone overweight to cause anything aywhere near it!!
Wish I could help further with advice on how to make it better - but just wanted you know you are not alone on this one
I’ve also read loads of other people with MS who have problems with painful feet - thay can’t all be wrong too!!
Maybe these neuros should be forced to join this forum as part of their training!!!
My feet burn if i have been on them all day long,even sitting i can feel them burn.They go bright red,so my circulation and pulses are ok,I persume its the nerve thing,Only thing that cools them down is standing on a cold floor or bucket of water,bit hard at work.
Thanks for your reply and support - isn’t this site wonderful for support? I so agree with you regarding neuros being forced to join this forum as part of their training ! They so easily dismiss everything! I am pleased I am not alone. I too get stabbing pains - short, sharp shocks throughout my body, but particularly in my fingers and this is when I’m not using them!!
I am really not hopeful in getting a dx (of anything) come my appointment in June. I think it will just be more bl**dy tests and sent away again for another 6 months/1 year. It’s just doing my head in. Marriage on the rocks, can’t work and don’t know what is wrong with me. Oh well, just got to put up and shut up I guess.
Thanks again and I hope you don’t suffer too much.
No, you are not alone with sore feet! I too have stiff ankles and sore feet…so bad that I feel like I’m around 85-90 with a chronic walking problem. When I get up from a chair or out of bed…I can hardly walk. During the day it eases off a little…although I still can’t walk very fast and def. can’t run!
I feel that since I’ve had all these ‘strange’ feelings/sensations…that I have aged considerably.
I am not diagnosed yet…and am still awaiting my results of MRI and nerve conduction tests. I had them beg. of March…and there seems to be a problem with who I’m meant to be getting the results from!
I just got my next neuro app. I first saw him in Feb. now I have to wait until mid Nov…this is so ridiculous.
Hi Ness I was referred to the MS specialist in Southampton by a Neuro at Winchester. Whereabouts do you live? I live near Eastleigh. Hope you get on ok in June and that you get treatment for your poor,sore feet. Teresa xx
Thank you Wendy. It is obvious that I’m not alone! The pain eases during the day for me too and I certainly feel like an old girl! I see my GP tomorrow and will discuss with him, but not sure he can do anything but suggest increasing my pregabalin dose.
I hope your MRI and conduction tests come through soon. There is definately something wrong with the amount of time we have to wait to see a neuro. I know sometimes they like to “wait and see”, but when people are experiencing so many different symptoms and in pain, there should be an easier way to access medical, specialist help.
My feet are my biggest problem I have quite a few but I NEVER get any relief from the pain in my feet, I have had this for 3 years been on every drug you could imagine pregabilin, amytriptilene etc nothing has helped me I only hope you are more fortunate. My feet buzz, pain, pins & needles its hard to describe but at times I sit and think I could have a vibrating mobile phone attach to soles of both my feet. I anyone has used a tens machine it is also like that very intense and find I cannot even concentrate or even read a book for the damn buzzing.
My left foot has been hurting for days. Stiff ankle, toe spasms & tension under soles of feet. Aching, pulling & sore. Less so with my walking boots on though.
I, too, get problems with my feet, and am also still firmly in Limboland.
My heels and the soles of my feet burn and hurt if I am stood for any length of time…this gets so bad that I can’t put my heels to the ground. My feet buzz and tingle on and off all the time (love the analogy of the vibrating mobile…that’s exactly what it’s like), and in the morning or if I’ve been sitting for any length of time my feet feel ‘stiff’ and painful.
I also had a phase of a really weird nerve-type pain on the inside of my left ankle on and off all the time which used to take my breath away as it was so intense, and also went through about 2 weeks of feeling as if I was walking on broken glass on the sole of my right foot just under my toes. This feeling has gone now, but the same part of my foot feels very tender when I walk now.
I will make sure I mention all this to the Neuro when I seem him, and see what he says.
I also get the horrendous facial pain (one side only), and will make sure I mention that, too.
Good luck to everyone still waiting for answers…thank goodness for this forum!
I also get terriable pain around my heel and feels like it is my bone, it throbs like made, it comes with stiffness too. I had my hand on the dining table at tea yesterday and I thought why is the table buzzing and realised it was me and my hand that was buzzing. The sensations we get are always as ever difficult to explain.
I get this burning pain in the bone in my toes, but it comes and goes. But I mainly get that sort of pain in my knees which is why I have to take my time doing things as the pain, tingling and weird “dizzy” feeling in my legs really affects my balance for some reason!
Oh I think I will join this delightful club… I have pains in my right heel. It feels like my leg is made out of a branch of a tree and I am walking on the snapped off end…that’s the only way I can describe it… Yvette x
I have very painful feet too! The left is not too bad at all really, but my right one gets very very sore. Pins & needles, buzzing, hard to describe … all around the sole, under my toes, on the ball of my foot… sometimes really bad stabbing, as if I’m being crucified / spiked through my foot. I used to get it in my right hand too, but that hasnt happened for quite a while.
My foot / hand pain was one of the main reasons that my GP refered me to neurologists, who then ordered brain MRI, which showed several spots of demyelination: neuro then said I definitely have ms or ms-like condition, and has refered me to ms specialist to determine / confirm diagnosis.
BUT… he also said he does not believe my foot / leg pain is related to my ms / mslike condition.
I think maybe he might be wrong on that one!
But maybe he is right? Maybe I have MS and also another / separate ‘issue’ causing tingling / pain in foot and leg? (I have considered sciatica) … it is difficult sometimes to know what symptoms are ms and what are caused by other things!
It is very confusing! But yes, neuros opinion aside… I also get the foot pain you describe… it is not nice at all x
He might well be wrong- I’m being referred to the neuro for the exact same reason! I have tingling/pins and needles in my hands and feet not to mention other neurological symptoms, but my GP said it was because of that she was referring me.
Not to mention after having stable eye sight (currently wear a mixture of glases and contacts) for many years that the last time I had my eyes checked I went in four months early (usually I’d be late) and said that my eye sight did a rapid deteriation (sp?). I literally went from being able to read a large print poster 10m away from my computer at work to having to really squint to read. Thank god I’m not a driver because I couldn’t read massive road signs for roundabouts either at the safety distance of 20m. Found out they went down by about .75, which is considerable seeing as I rarely would have my glasses changed that much every 2 years.
But then, who knows. Could be a series of things linked to MS to cause the symptoms. But I’d kinda ignore him and wait for the specialist MS appointment. Kinda like I’m hoping my GP is just being over cautious referring me to a neuro instead of the possibility of MS or some other neuro condition. xxx
He might well be wrong- I’m being referred to the neuro for the exact same reason! I have tingling/pins and needles in my hands and feet not to mention other neurological symptoms, but my GP said it was because of that she was referring me.
Not to mention after having stable eye sight (currently wear a mixture of glases and contacts) for many years that the last time I had my eyes checked I went in four months early (usually I’d be late) and said that my eye sight did a rapid deteriation (sp?). I literally went from being able to read a large print poster 10m away from my computer at work to having to really squint to read. Thank god I’m not a driver because I couldn’t read massive road signs for roundabouts either at the safety distance of 20m. Found out they went down by about .75, which is considerable seeing as I rarely would have my glasses changed that much every 2 years.
But then, who knows. Could be a series of things linked to MS to cause the symptoms. But I’d kinda ignore him and wait for the specialist MS appointment. Kinda like I’m hoping my GP is just being over cautious referring me to a neuro instead of the possibility of MS or some other neuro condition. xxx
For about 3 years, my heels burned and ached and it was thought it was caused by pressure pains, when my feet touched the bed at night, or day if I was having a duvet day. They were tight when sitting in my wheelie.
The district nurses tried their best by getting me 3 types of pressure care mattresses, 3 types of heel protectors, 2 types of barrier cream. Some worked for a time, but not for long.
Now about 6 weeks ago, they said they didnt think it was pressure pain and suggested it might be nerve pain.
Well I think they were right. I saw a new (no.15!) who put me on pregablin for it. I have been on it 3 weeks now and it is easing the pain. I began on 75mg a day and am now on 100mg and will increase it to 150mg next week.
I also suffer badly from foot drop/flop! I will be asking podiatry if they can help with braces.