having flare up-all sensory - Multiple Sclerosis Message Board

Tasia W · 04-19-2008, 01:05 PM

Hi Everyone!
i am having a flare up right now and I have been experiencing it since early January. Actually think that it is starting to subside. I have been having frequent and extreme stabbing pains in my right thigh, all my fingers and all my toes (especially the big ones) Burning and stabbing pain in my neck that taravels down my spine,then leaves a tingling sensation. I think one of the worse fellings was the stabbing pain on the tip of my tongue. It felt like I stuck my tongue into a jar full of needles (ouch). The nerve pain seems to be happening all over my body and will sometimes stop me in my tracks. I am extremely fatigued and seem to be catching every little bug this year (not like me)
Actually didn't realize that I was having a flare up until I saw my neuro in April. She perscribed me Gabapenten for the pain. Scared to have perscription filled out due to possible side effects. Would appreciate any comments from anyone on this med or a med like it.
Also will be having another MRI and will be visiting ms clinic in a local town. My neuro gave me the choice of two ms clinics one is one hour away the second is 5 hours away. naturally I chose the one closest. She informed me that the clinic in Vancouver (the one I did not choose) is more progressive and now I am thinking that maybe I should go there instead. She said the one that I chose seems to be more reluctant when starting patients on ms meds. I have not gone yet and am still waiting to hear. I am wandering if I should have chosen the one in Vancouver. I can still change my mind.I am not on any ms drugs right now and up till now have made the choice not to start any. I am realizing now that I probably should cause I sure do not enjoy the way that I am feeling right now.
I have not posted in quite a long time here...for me it has been work work work and family obligations and not much time for anything else...when I can I sleep. I just wanted to reconnect with you wonderful group of people because I value and appreciate the support!!
Tasia

MSJayhawk · 04-19-2008, 01:31 PM

If your pain is emanating from your nerves (nerve pain), meds may or may not work. I was given a pain killerand told to stop if it did not help after 3 days. Nowadays, I have found either heat pad or ice compress on the painful zones to work for me. WHen I had extreme pain in my hip and thigh, I used a heat pad and over stimulated the area of pain. The nerves shutdown until the area cooled. I kept the heat going for nearly a month before the damage healed. My neurologist also suggested cortisol injections on the pain area, but she cannot do it on my most painful spot- my head- because the pain is below the bone without an opening nearby.

As to clinics, if your nearby clinic is pro-active and will work with you, stay close to home. I drive 2 hours to my clinic every 6 months. 2 hours, for me, is a long drive, but well worth it when I compare it to the closer alternatives which did nothing for me. 5 hours to Vancouver could be a beneficial trip, but you need to make that decision from your perspective.

MSNik · 04-19-2008, 08:56 PM

Hey Tasia, just alittle more info on Gabapenten....this is the generic drug name for Neurontin....it is a nerve pain drug, but it is actually an anti-seziure drug...its also the first drug they always try for nerve related pain. It might work for you..it didnt, for me. I got no relief at all from it and it made me a zombie...it really does make you sleepy..I dont know what dose they gave you, but they usually start very low and work up to full strength...low can be 100 mgs a day, once or twice a day...I know of people taking 400 mgs 3 times a day! For them, it helps....
The one thing you need to know about this drug is if you start it and dont stay on it, dont stop it cold turkey..it can induce seizues...talk to your doctor about the best way to wean yourself off of it if you decide not to stay on it...but if you are having pain, it might be worth a try. Its not addictive, and it really is widely used...its just a hit or miss thing whether it will help you or not...FYI, Lyrica is another one they prescribe for the same thing- its more expensive, no generic to date- and again, dont stop it cold turkey..

Hope this gives you more insight...
Nikki

Nenu · 04-20-2008, 03:21 AM

Mouth pain has to be the worst thing I've encountered with MS. Mine has not stopped yet, it's improved, but I'm dealing with it daily.

Anything from mild burning up to shooting pain in my face/gums. I originally thought I may have gum disease or an infection. Turns out it's neither. Usually the right side of the mouth (top row of my gums) and in my cheek, but occasionally I get similar pain on the left side of my mouth/face.

I've had burning mouth so bad before, that it was nearly impossible to sleep. It was aggravated further by stress (before diagnosis). Not fun at all! Drinking/eating seems to calm it, even brushing my teeth, but I can't do that all day long

.

Pain killers do nothing to help it either. I just have to deal with it as best as I can and try to forget about it.

MSJayhawk · 04-20-2008, 11:16 AM

Major ditto's to what MSNik said about stopping cold turkey. Many nerve pain drugs are designed to deaden the nerve receptors or the nerve connections. If your pain is due to sheath damage which is not located at the pain receptor or nerve connection, then there is a higher probability for the pain meds not to work.