Any suggestions to relieve the burning sensations?

[Auriel]

How did you get Ms misdiagnosis @Moose ? (I thought they used a brain ct or mri) been trying to get them to give me an ms test for a while but they just hit my knees with a tiny hammer then tell me there's no need for one , it's like pulling teeth sometime's trying to get gp's to send you to tests for things, (it is in my case) nice to see you posting (not seen you for a bit)
️🌤

 

[JamieMarc]

@Sueb24
I agree with your doctor and that it does sound like neuropathy. Have you had any nerve conductivity testing done for that?

I take gabapentin for my own neuropathy which is primarily in my right arm and my feet. I take 300 mg three times a day and it does help a great deal with my arm, but not as much with my feet.

 

[Badger]

I've had burning pain on the soles of my feet for years, it can feel like I've walked on something abrasive. Soft diabetic friendly wool socks help with comfortable shoes. It took ages to find the right ones. They do still flare depending on the weather and what I've been doing.

Pregabalin helps calm down the burning neuralgia in the back of my forearms. It's still an issue and can flare but the meds helped.

@Sueb24 hopefully you can get some relief in time with medication.

 

[Moose]

Well - I lost use of the right side of my body back in the 90’s for several months. Was sent to neurologist- who did nerve conduction tests- apparently something was wrong- was going to do a nerve biopsy and asked me if I wanted a second opinion. I said yes (regret that). The second neuro did a spinal tap and MRI. He told me he was sorry to tell me it looks like MS because I had extra antibodies in my tap results. He told me he couldn’t take me on as a patient because he was going to retire at the end of summer and sail the seven seas. So next thing I know I’m getting passed on from neuro to neuro to neuro in that neurologist associates. Finally after 20 years I went out of their neurological circle of doctors and voila. The guy at UVA did all the same tests and confirmed it was a misdiagnosis and then went to Duke Neurology where they diagnosed fibromyalgia after testing and looking at my medical history since the 90’s. About 14 years ago I was diagnosed with Hashimoto’s thyroid disease. So that’s my weird story and it’s been a strange journey. I’m 60 and have found the last 5 years to be the worst. I’ve had to do extreme lifestyle change but it can always be worse. I do what I can while I can and on my good days feel blessed. The migraines take me down at least 9 days per month and the body pains are progressing but I’m going to enjoy what I have left on earth here!
Man that felt like I wrote my first novel

 

[Sueb24]

Thank you Badger. The burning is still there but possibly not as bad as it was. I won’t take pregabalin again after it caused me to put on so much weight last time.

 

[Sueb24]

Maybe you are the next J.K.Rowling-in-waiting Moose! Sounds like a lot of hocus pocus before the neurologists have finally admitted they don’t really know and you get the abracadabra classic ‘let’s call it fibromyalgia’. Gawd! Isn’t it just soooo frustrating?

I do admire your ethos though. Do what you can whilst you can otherwise what’s the point in any of it….

 

[KathleenTP]

For over a year I have had a very deep and burning sensation when I get up to urinate (which is way too often). Bi-lateral from toes to knees and fingers to elbows. I just quit gabapentin because it did not seem to help any. After the pain subsides I have a short lived hotflash (get hot and sweaty and not menopause - I am 73). The whole episode usually lasts about 10-15 minutes. It is not every time I go to the bathroom. Last night 7 toilet trips and five episodes.

I have spoken to so many different doctors about this with little satisfaction. Thankful for any suggestions.

 

[Sueb24]

Gosh, that sounds very similar to me. Toes to knees, back of thighs through buttocks and occasionally in elbows and hands. Does the burning intensify as you wake up? Mine does.

Have you had any nerve conduction tests or any diagnosis of small fibre neuropathy? I’ve been told if you have neural tension it may be that something is restricting the sliding of the sciatic nerve or putting pressure on it which could be causing all the burning/tingling sensations in the lower limbs. (It can happen elsewhere if there is pressure on a nerve).

As for how to treat it, the main suggestions seem to be physio and exercise which isn’t easy as we get older. Or, of course, antidepressants which are known to help nerve pain but they have probably been tried already. Not much help but I know how you feel @KathleenTP

 

[Jmeade3]

My feet do that all the time at night and I got these feet ice packs from Amazon. It sooths it so it doesn't spread. For me at least.

 

[Jmeade3]

I found ice pack socks on Amazon. If I put them on when my feet start to hurt or burn, it stops it from spreading to my legs and is really soothing.

 

[marmicros]

Hi, this isn't very helpful, but, yes, I do often experience tremors when I awake, sometimes they stop as I start moving about, and sometimes they don't. I haven't bothered to speak to my doctor because he seems dismissive. I'm currently trying to find a fibro doctor near where I live.