pain so bad, keeps me up at night

[sunshine008]

hi everyone!

So, the burning pain has gotten so bad it keeps me up at night and I can't sleep which makes work so difficult the next day.

It used to be tolerable, yet now it's impossible. its' worse when i lay down. around the back into the front, the legs, face, arms entire body. ofcourse feels like someone is pouring lemon on an open wound.

i've noticed it's worse when i go to the gym. i used to work out all the time, it always helped my ms. Yet lately it's like poison to me.

I've tried all the suggested meds and none work. so i'm going to go back to tumeric to see if that'll do it. i just started copaxone yet had bad reaction so dr pulled it for a week.

anyone else have this problem? especially worsening when you try to go to the gym?

i can survive the days because my minds redirected because i'm so busy at work, so i shut the burning off yet at night wow!

any ideas on what to try? does anyone else notice the worsening when trying to go to the gym?

hope everybody's well!

[J-Bo]

Hi sunshine

I have intense burning in my feet, and it gets really bad at night. This is probably a long shot, but the only thing that has ever helped is Ambien CR. It's not just helpful while I'm sleeping--it takes away my pain before I go to sleep. There are obviously problems with this, but at least I get an hour or two of awake time without pain.

I'm the only person I know of who has this effect from Ambien, but hey, it only takes one time to know if it works, unlike all the other drugs that take weeks or even months to work.

I really hope you find relief because it's a horrible thing to live with.

[Diamond57]

Me too!

I get such burning and the feeling of bee stings plucking at my skin. Nerontin helps sometimes and then other nights not. I take an ativan to calm myself and I take so many other pills for other stuff. I'm tired of taking pills. I have to be more faithful to my excersising because that does help. But when I'm so wiped I can barely do anything.

I hope you find relief soon.

My best,
Susie Q

[MSW1963]

sunshine008, I've had burning-cold pain in my arms for a very long time, and mine is always worse at night, after daytime exercise, or if arms are too warm under bed covers, even if my arms get too warm during the day in a long sleeve shirt, jacket or coat.

I've even had it happen when menthol tooth paste got on my hands in the morning, and hours later in winter weather, the cold air with the earlier exposure to menthol on my hands will cause an 'episode'.

I can't bike ride any more because body weight on my arms while holding the handle bars induces pain in both arms, and sometimes paralysis in my rt arm. I tried hand held weights with the same result.

In the last 2yrs, it's only improved in that the pain isn't immediate or while exercising as it was in the past, but instead after laying down sleeping for a few hours.

Even when I skip a day of exercise, the pain comes a night or 2 later. I've even noticed there are days when lifting my arms over my head while putting dishes away causes very mild sx's.

I've read about 'phantom pain syndrome' in MS and it seems to be the only explanation for my burning-cold arm pain and paralysis.

My MS doc attributes my arm sx's to a spinal cord lesion. He dx'ed spinal cord lesion based on results of my clinical exam, although none have been detected on my spinal MRIs. I also have MS Hug that I and my doc believe is related to my arm sx's.

My sx presentation is pretty unique and I wasn't sure there was anyone with similar experiences.

Have you talked with your doc about sx's, and do you have spinal cord lesions on MRIs, I think c-spine lesions are responsible for MS hug and arm sx.

[MSW1963]

Forgot to mention that my MS doc explained the reason for the night pain and in my case the delay I sometimes experience (pain the 2nd night after skipping exercise for 1 day), is that the lesion becomes 'agitated' during exercise, even if without sx, but laying flat at night allows spinal fluids to give the spinal cord lesion some 'extra rub', or to quote him, a spinal fluid 'back wash' effect over the spinal cord lesion.

[grammy2many]

cold or heat

When my feet or legs get that burning/restless feeling, I can usually get relief from either a cold from the fridge "Bed Buddy" or one that has been microwaved for a few minutes. Usually the pain is helped by cold while the achey/restless symptom is usually calmed by the warm. Hope it will help for you.

[sunshine008]

hi

That makes sense, I"ve always had this as a symptom yet lately it's been worsening and as i said with the gym forget it, so the weight's piling on and there's nothing i can do...

i think i'm going to join a yoga class and tai chai and try that instead. my neuro said it's due to the lesions and black holes i have connections can't be made anymore? thought it kinda sorta made sense lol.... does any of it make sense?? absolutely NOT!!

I went and bought ginger root and tumeric today and popped them right away. going to take more before bed. see if that helps and going to stop playing rocky at the gym since that just isnt' who i am anymore.

kinda stinks, i really liked the gym i think more for my mental state of mind..

[MSW1963]

Correction...

'Phanyon Limb Pain Syndrome in MS' not 'phantom pain syndrome' in MS.

[grace4et]

give lyrica a try. it really helps calm down nerve pain which causes those burning, stinging sensations.

[sunshine008]

thanks,

i tried lyrica no good either. i'm really hard to medicate the drs have told me lol.

i've heard great stuff about tumeric, used to take it and added in ginger root. so here's hoping!!

[Diamond57]

Hi Sunshine008

I also have restless leg syndrome with all the burning and stinging. You might want to give neurontin a try. As I said for the most part it helps. The higher the dose I get a little bit loopey. I take the higher dose at bedtime. I certainly can't drive when I take it sometimes during the day.

I really feel for you.......
Susie Q

[Poppy7402]

A combination of meds

After quite a bit of experimentation I found that a combination of Doxepin and Carbamazepine are really good for the burning pain. My left hand used to be like I'd put it in a frying pan and my forearm burned like sunburn but with the combination of the two meds I hardly ever have it now. Occasionally I still get a bit of burning in my right leg but otherwise it's all good.

[DianeD]

Severe itching is like pain

I have severe, deep down itching in one foot. My neuro says it may as well be pain as the two are almost inseparable. I can't use the lyrica or Neurontin; they make me loopy, unable to stay on my feet or even talk.

I've had this about 4 yrs. One time, for some unknown reason it just went away....but about the time I got used to feeling good and even sleeping normally...,tada...back it came.

At times I want to scream or cry, but I don't. I know it won't change anything.

My only suggestion is to try heat or cold. I've tried a gazillion (so it seems) lotions, ointments, gels, miracle cures etc., to no avail.

I sympathize with all who suffer either itch or pain. Good luck.

Diane

[tortis]

Hi, before I was diagnosed my neurologist put me on nortriptyline which is very similar to elavil, they are a real old class of drugs but they work very well for many people for those exact problems and they also help sleeping. Whats nice is you can start with a very small dose and get burning relief and increase the dose as you need it. Often the old drugs that worked are forgotten about.
PEACE

Tortis

[riverlady5783]

Burning pain

I have the same burning pain in my legs and feet and have tried Tegretol and Neurontin before. They helped at first, but I had to keep increasing the dose. And then I was a zombie in the morning. Now I'm taking a combination of Lyrica and Nortriptyline at night. The combination was helping until summer hit with hot weather. We have AC running 24/7, but then the dog wants to go out and I open the door and get hit by a blast of heat

I'm waiting for fall weather so I can go outside in short sleeves and get chilled!

Lisa