Relapse?

[grgo]

I  was diagnosed in 2008 with R.R. MS
My worst symptoms are the pain in my feet! Crazy Pain!!  BURNING PAIN! I have never had one day of relief since 2008. Now my legs are now numb to my waist. Walking is getting worse, my head is foggy 24/7 . I have No energy ever and my memory lol!
I have never really met anyone with MS and am glad I found this Forum.
I don't get it when people say they are having a relapse as I always feel terrible and never get a day without relief.

My Question.
Does anyone else suffer from this burning in the feet? If so is there a drug that might help me?

My GP recomened Lyrica but when I read up on it I got scared and never filled my prescription! This cost me tens of thousands of dollars as my insurance company denied my disability claim based on this after reading my Dr report!
Anyway I would love to hear from someone with MS rather then a prisription pusher! Please help!

[duck1000]

I was given Acthar as an option to help the pain in my feet, and it worked.
Ask your doctor about it!  Gina

[grgo]

WOW Thanks everyone!
So glad I found this Forum!  Just to hear from others helps!  I would love to reply to so many posts only NO energy to do so! I apreciate everyones time and effort to do so!
Some really nice people on the forum! Thanks Everyone!!!!

[kwarendorf]

I have intermittent burning sensation under my toes on both feet. In another thread I described it as the burning you get with athlete's foot. But I'm pretty sure I don't have athlete's foot :-)

It's not so bad as to make me want to mess with narcotics etc., but it can be pretty annoying.

[rendean]

Bump please. Anytime your post slides to the 2nd or 3rd page and you have not receive any answers that help, you can just post "bump" in the comment section and it will be moved to the top of the first page, at least for awhile.

Ren

[Khiba]

I too have had the burning numb feet since 2008! After trying a lot of different meds and combos of med, I came back to Gabapentin. It seems to work well enough for the nerve pain, and keeps me fairly sane.

I am also numb to the waist, having a lesion at T3-T4. The numbness has altered my gait so that my muscles hurt and my lower back screams daily. I have been on a fentanyl patch 25mcg every other day, and that did help with overall pain but its now not enough. I take half a tramadol in the late afternoon so I can stay on my feet long enough to prepare dinner and sleep fairly well.

This pain thing is rather discouraging. I get depressed about not being able to walk very well but I still do my weight workouts and pilates training to keep what mobility I have left.

I find that Acupuncture helps the pain a lot! But since insurance doesn't cover it, I only get the rare treatment but sure enjoy the results.

grgo, I hope you find a solution for your pain. With all the meds out there, some combination is going to help. Remember you are not alone with this problem.

Cheers,
Jessica

[Sammoen]

Hi my feet are tingle and burn all the time and are also very discoloured and cold. I haven't worn a pair of socks for over 10 years now, or a shoe for that matter, I wear sandals all the time.  I can't wait to wear a pair of socks and runners again :)

[teenyturner]

Hi,  isn't it wrong the way insurance companies etc can turn down claims because they think you are being non compliant with treatment.

I think we should all have a right to agree or disagree with certain parts of our treatment and not be blackmailed into treatment we don't want just to satisfy insurance companies.

Now for the burning feet.  ME TOO. Only mine has been just a year and a half.  My doctor won't prescribe anything for it because he says it could cause mind alteration and increase my risk of falling.  Personally, I'd be happy to take that risk but if he says no, what can you do?

I read on here that people have MS sides!!! I have symmetrical problems up to the level of T3 with some sparing over parts of my back.  

Grog,  I notice that you talk about to level of your waist,  is yours symmetrical too?  I wonder why there are differences, what causes unilateral and what causes both sides.

Regards

[doublevision1]

I have what I would now describe as mild burning pain on the bottom of both feet; and also the sensation of walking on a beach of sand, marbles, and shards of broken glass.  This has come and gone in intensity since 2008.  However what has been non-stop since 2008 for me is burning and constricted sensation in my left hand up my arm to my elbow, and numbness of left hand fingers.  I've become incredibly clumsy and weak esp on my left side.

After trying several meds I've come full circle back to gabapentin and amitriptyline.  I'm on the highest dose permitted of gabapentin, which seems like an awful lot for marginal relief, but I'll take any relief I can get, esp as I have no side effects from this med.  I've also tried Cesament and Sativex which are synthetic cannabinoids approved in Canada for MS pain.  They worked somewhat but I couldn't tolerate the side effects esp the feeling of intoxication.

I sometimes notice a bit of relief when I take Tylenol 3 for other pain (headache, dental issues).  However codeine is not a great option for long term chronic pain.

Apaprently Wellbutrin and Effexor are also used off label to treat neuropathic pain, though I haven't tried either myself.

Montel Williams has the kind of severe burning pain in his feet that you and others describe.  He swears by cannabis, the natural kind.

Given the severity of pain you are experiencing, consider the options available to you for some relief, especially since unremitting, relentless pain has its own ''side effects', including insomnia and depression.

[essdipity]

Burning pain is so common in MS. Right now I'm having it on the tops of my feet and all the way up my shins. Sometimes it's more tingling than burning, sometimes it's almost numb. All variations on a theme, to my mind. My right side, which is my 'MS side,' is considerably worse than the left.

Lyrica or Neurontin are about the only meds out there that help with this sort of thing, and not always, at that. There's no reason to be afraid of these--remember that every possible side effect has to be listed, and many are incredibly rare. Also, every conceivable thing that happened during clinical trials must be listed. Therefore if you were taking Lyrica or Neurontin and fell and broke your arm, it would seem as if fractures could be a side effect, when of course that's silly. And you can always discontinue these drugs if you feel they are causing negative effects.

There are so many things in life, including many aspects of MS, for which there are no remedies, that I just can't see not trying what IS available. If something makes unbearable pain slightly bearable, that's for me.

ess

[lovemy6monkeys]

Burning feet was my first real sensory problem, and it started off bad and was pretty painful, but only for a few weeks not years! Have you tried neurontin (gabapentin)? That helps for nerve pain. Besides my Copaxone, it is the only other medicine I take daily for my MS, and I take a pretty low dose (just between 400 and 800 mg once a day before bed, depending on my soreness level)

((hugs)) I hope you get some relief soon!
~Jess

[Sumanadevii]

I feel like a burn victim when I wake.  It doesn't seem to matter which side of my body I sleep on.  It burns when I wake.  I have found nothing but narcotics help.  I take a small amount in the morning and keep another for  the middle of the night.  Because of the burning if I wake (I usually do after three hours or so) I am up until I get it under control again.

[grgo]

WOW that was fast! Thanks!!

Ya but my feet have been burning for 3 years! Prob permenant damage?

I had the CCSVI procedure  as my left jugular was closed! Even if it had nothing to do with MS I did not think it was a good idea to leave it blocked!
Still NO relief with my MS symptoms! AND my vein is open I have had it re-tested!

[sllowe]

Hi there!

I've had the burning before, and the past 2 weeks bottom of my right foot! Ugh, it's annoying!

Funny - I didn't fill my script for lyrica either (was given to me inthe past for burning on my back). Took months to go away, but it did.

What's the matter w/us to not try something that may work is beyond me, lol

Glad you found us :) You'll find we are mixed here, MSers, those seeking an answer to their issues, and differential dx'ers.

If you find the person w/the voodoo doll with the flame to our feet - blow it out, and ditch the doll, lol
Please check in on the "who is diagnosed" thread when you have time.
-Shell