burning foot pain

    • Anonymous
      February 18, 2008 at 11:40 pm

      Hi All: I have been gone for a while and am glad to see so many new people-well, not glad exactly, since you come here only because of our joint diseases-and wish to say welcome to all the new people. I am entering my third year post GBS, suffer chronic pain and damaged nerves resulting in my being in a wheelchair still and of course residual fatigue. I have written before about pain in the feet but am facing increased pain with neuropathy. For the past few weeks, about two or three hours a day, I suffer such intense burning in my feet that I can hardly stand (no pun) it. My neuropathy has gotten much worse and truly the pain is tortuous. I have an ointment I put on but am wondering about getting a lidocane patch which is supposed to be effective. I wonder if anyone has tried this patch and, especially for people two or more years out, if you ever experienced such an increase in neuropathy. I cannot tell why the pain is so much worse-it comes only when I am sitting in my wheelchair-as I rest a lot and of course do not walk much.
      Thanks for any suggestions. Hello to the old timers who may be lurking about and to all newcomers. While I have not posted much lately I find it very hard to deal with all my residuals alone and still read posts often and still consider the forum a home to come back too. Jeff

    • Anonymous
      February 19, 2008 at 8:49 am

      jeff, burning foot pain for me too for years along with hot, red feet. never really solved it. went away w time [well down a lot]. how much neurontin do you take? can you rest in bed rather than in sittting? or at least trying to lean over hard to the left or right? lido is suposedly no good for gbsers, although some have taken it w/o effect. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 19, 2008 at 10:40 am

      Hi Gene: I spend a great deal of time in bed now which is why this is so discouraging. Thanks for the info, though. Jeff

    • Anonymous
      February 19, 2008 at 12:31 pm

      Jeff ~ have you tried rubbing your feet with Vicks and putting on a pair of socks? The menthol in it will bring better circulation to your feet which means more healing oxygen in that area. You mentioned that for 2 or 3 hrs./day the pain is very intense. Is it always about the same time of day? Perhaps an hour or so before then you could take more neurontin?

      I am truly sorry to hear of how difficult it is for you right now 🙁 As Gene mentioned ~ time. It’s been that way for me too. Please know that healing thoughts are with you.

    • Anonymous
      February 19, 2008 at 12:59 pm

      Jeff, are you on Neurontin/Gabapentin? I had really bad burning in my hands, felt like I dipped them in acid. The Neurontin really helped.

    • Anonymous
      February 19, 2008 at 2:21 pm


      I too am battling at the moment with my feet and hands – however I dont think it is nearly to the point where yours is at the moment. The had ‘cooled’ off for a couple of months – it wasnt constant, more breakthrough. As of 5 days ago it has pretty much been constant, burning and cramping. I had such a bad expeirence on 150mg Lyrica, but even though it had side effects, it still broke the awful pain and it was wonderful for a couple of weeks. I have 26 tablets left and am wondering if I should break the capsules apart and try half the dose to see if it will help get the edge off without the very bad side effects. As to the Lidocane patch, I’m trying to remember who uses them ….. I will try and go back and see if I can find it.

      I have been thinking of doing the Vicks thing that Judy said, and I think I am going to try and get a heating pad to put on my feet and see if it relieves some pain.

    • Anonymous
      February 19, 2008 at 5:06 pm

      Thanks all: I am on neurontin-2700 mgs. My pain doc just called and told me to increase the dosage 300 mgs a week until I get relief-not to exceed 4900 mgs a day. So I will try that. It is a good idea to take the neurontin right before the time it gets really bad-usually every afternoon for some reason. I will do that and I will try the vicks as well. I don’t like taking so much neurontin but will do what it takes. Thanks all. Jeff

    • Anonymous
      February 20, 2008 at 4:26 am

      Sorry, I don’t have any remedies for your burning feet but I do know what you are going through. I am having the burning on my face now as well as my feet and hands. My face feels like I have a fever – but of course I don’t – it feels exactly how my feet and hands feel. Mine has been worse since I have been doing more physically (trying to catch up on house work etc, over the past couple of weeks – which by the way, I never catch up on!!) – so it’s time to rest up for me!
      I’d be interested to know if you find a remedy.
      I hope you find some relief soon!
      Best wishes
      Kazza (CIDP)

    • Anonymous
      February 20, 2008 at 8:49 am


      you have a good doc who will raise your neurontin. you can go as hi as 5600 mg/day & it doesn’t have to be spaced out evenly eg. you could take 1000 or more at before your worse times of pain. also you can up it by more than 300/week, but then cut back to the min needed to forestall the pain. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      February 28, 2008 at 6:05 pm

      I just got these new messages when the forum came back. Thanks Kazza for your support-it means a lot. And Gene, that information is priceless to me and the kind of thing docs somehow don’t tell you. I will follow your advice and take more at the bad times of day (always in the early afternoon) and also go up and go back down until I find the right dosage. That really is very helpful. Thanks, Jeff

    • Anonymous
      March 5, 2008 at 11:06 pm

      My onset for gbs was 9/2006 and have the burning pain (neuropathic) pain in my feet as well. It seems to be more prevalent in the evenings when I sit down and I have noticed that it increases when my feet are not elevated. In other words try keeping your feet up when sitting. Physiologically I suspect that circulation is exacerbating the burning. Dr. Gareth Parry is a pretty respected neurologist with gbs experience. He has written several articles on gbs with respect to fatigue and collateral sprouting which he believes causes the pain in the feet. Check them out and I wish you luck.

    • Anonymous
      March 6, 2008 at 9:27 am

      [FONT=”Comic Sans MS”][SIZE=”3″][B]
      Jeff, this is an excerpt from the Spring 2000 Newsletter:[/B][/SIZE][/FONT]

      Residual Effects Following Guillain-Barré
      Gareth J. Parry Consultant Neurologist Auckland Hospital
      Professor of Neurology University of Minnesota


      A second under-appreciated symptom that may persist for many years is pain. Certainly severe disabling pain is very rare. However a number of my patients complain of persistent discomfort in their feet. The discomfort may take the form of annoying parenthesize (tingling) or there may be a vague aching discomfort. The symptoms have the same characteristics as typical neuropathic pain in that they tend to be worse in the evening or at night and are particularly annoying following days during which the patients have been up on their feet a lot. The discomfort is not particularly responsive to analgesics but usually does respond to drugs such as gabapentin or amitriptyline, drugs typically used in the treatment of neuropathic pain. However, these medications have to be taken on a daily basis to be effective and one problem with deciding whether to treat this residual symptom is that the discomfort is usually rather mild. Thus, patients may be daily irritated by their symptom but be reluctant to take a drug every day for a symptom that significantly bothers them only once or twice a month. I have seen no mention in the medical literature of this phenomenon. It is possible that I see a highly selected group of patients in my practice who had initially been more severely affected and that the prevalence of this annoying residual symptom is much higher in my patients than in the usual population of recovered GBS patients. I would be most interested to learn whether the group of patients reported by Merkies and colleagues also suffered from minor persistent discomfort.[/SIZE]

      [FONT=”Comic Sans MS”][SIZE=”2″]There are more of his papers in the archives, I find them very helpful, I wish you the best,

    • Anonymous
      March 6, 2008 at 6:49 pm

      Thanks again for the responses. I have raised my dose of neurontin to 3600mg and that has helped a great deal. I have read Dr. Perry’s book and found it immensly helpful. Aside from the burning I have constant dull aching pain in my legs as well as that sharp stabbing nerve pain also in my legs. Only oxycontin has helped me with that pain and it is now under control as well. The constant pain is the residual most difficult to deal with but at least, with neurontin and oxycontin, I do have a handle on it. Being off my feet in the wheelchair also helps a great deal as my legs don’t get so fatigued. After 5 minutes of walking I feel like I have run a mile my legs get so tired and that is when the pain gets out of control. I have also noticed that sitting up for more than a few hours brings on uncontrollable pain in my thighs. All these symptoms seem to arise form the axonal damage I suffered in my paralysis. Anyway, thanks for the info and the encouragement. I wish you all the best as well. Jeff

    • Anonymous
      March 18, 2008 at 11:39 pm

      The feet are the worst. On top of the constant discomfort I have the effects of Diab T1 that make things worse. When my blood sugar drops to 50 and the feet burn intensifies I know I’m about to fall down and not get up:o

    • Anonymous
      March 19, 2008 at 1:13 am

      I use a hot pack.
      Seems to help most of the time.
      When things are bad nothing really takes away all the pain…

      Rhonda from Canada

    • Anonymous
      March 19, 2008 at 12:18 pm

      I have similar problems with my feet and I am post GBS 25 years. I had little residuals that affected my abilities to function until about 4 years ago when they began to increase. Today I have severe tingling and stabbing pain in my feet especially when i am tired or have been on my feet all day. Most of you have a burning sensation but I have the opposite. My feet feel as if they are frozen, as if I have been outside for a long time and the cold has set in. When you touch my feet though, they are hot to the touch. Does anyone else have this symptom? I have been tested for Diabetes, lupus, etc, and nothing comes back postive. I had an EMG and NCV four months ago and do have peripheral neuropathy which is being attributed to the GBS.

      I had thought I was done with GBS but I guess we are never done….