My MSAA Community
3,217 members5,888 posts

Nerve pain everywhere

Hi I don't know if anyone remembers my last post ("New to the site, new symptoms"), but I had an MRI pending on my T-Spine and today I got news that it was normal. They're suspecting its rheumatic, and I can't get in to see a rheumatologist til October so I was wondering if anyone had a clue what it could be or even advice for nerve pain.

I have nerve pain literally EVERYWHERE. In my arms, hands & fingers, legs, chest, both eyes, and feet. Recently my legs started to feel like they were falling asleep and it made walking an effort. its almost like my legs feel weightless when it happens. Also my muscles twitch everywhere, mostly my legs. It kinda feels like something crawling around in my legs. warm sensations as well.

i don't know what the hell is going on with me.. any ideas???

23 Replies
oldestnewest

Have you had a spinal tap with an MS panel run? I had 3 of them before they were able to diagnose me. Good luck!

Reply

When I was diagnosed in 2011 I did!

1 like
Reply

I have nerve pain that feels as if someone plugged my finger into an electrical socket that shoots down my left arm and leg. Lyrica really helps, but it makes me loopy.

2 likes
Reply

I meant to ask my neurologist about Lyrica but forgot. I never had pain until about 2-2 1/2 years ago. It's absolutely my worst symptom now. I have blamed it on 1. Getting a baclofen pump (long story but I am working on getting the damned thing OUT!) and 2. Greatly reduced physical activity (that in itself, easily becomes a self-fulfilling prophecy, kind of a cruel joke. You hurt, so you do less, which worsens your condition, which worsens your pain, rinse and repeat...). The pain that I experience is in my back. It makes everything more difficult. I tried gabapentin (aka neurontin) for years but recently stopped after discussing with my neurologist: I don't believe that it helped at all. How difficult was it to get your doctor to let you try it? If it makes me sleepy, I fear it's not the best idea.

1 like
Reply

Actually, I started taking Lyrica 2 yrs before my MS dx. I suffered from horrific chronic hemiplegic migraine. I was still working at the time and the migraines were so bad I was on the strongest opioids they make, such as Fentanyl, through patches and lollipops. The dr also had to hospitalize me with Demerol drips for days at a time. I used to work with these things, pressing my fist into my right eye while working with only my left. I missed a lot of work because of these things. Finally, after yet another hospitalization, the dr went down a list of all the meds we had tried and the only one left was Lyrica. I started on it and didn't have another migraine for 11 mos.---then I got diagnosed with MS and he suggested it for the nerve pain and it works just fine. I am very sensitive to medication, however, and my normal dose is 50 mg in the a.m. and 100 mg before bed. The 50 mg doesn't affect me, but over that amount makes me loopy and tired, and sometimes nauseous as well. So it may not be compatible with a work schedule.

2 likes
Reply

Ouch :( see, I've tried both gabapentin and lyrica but they put me out cold and I have to be able to get to work at 7:30 every morning. I was wondering how anyone else felt on it. I'm going to try lyrica one more time

1 like
Reply

I just started the 50MG in AM and 50MG in PM, of the Lyrica, but the first dose did not make me sleepy or loopy. I take the next one tonight. I can go up to 2 in AM and 2 in PM, if need be, we will see.

Reply

Is it possible you have Lyme's Disease?

Reply

I was diagnosed with MS by an MRI and spinal tap and I recently asked if maybe that's not what I have but my neuro said he ruled everything else out when I originally got tested. I did have a new lesion on my brain but he's telling me nothing explains these new symptoms

1 like
Reply

Have you tried Neurontin?

Reply

I might have, is it the same as Gabapentin and/or lyrica? Because those two put me to sleep pretty good and that's not gonna work at work lol :(

2 likes
Reply

Gabapentin is the generic version, yes. That sucks. THC capsules work good to but increases appetite and can make you sleepy pending on how you react some people it gives energy others and makes sleepy. But it has no bad harmful side effects and can be given by prescription.

2 likes
Reply

Oh also pain clinic maybe able to help a lot of them recommend nerve block which is once every 1 to 3 months and I've heard nothing but positive reviews from people who have had it done

1 like
Reply

I really want to try the capsules. I had my card when I was 18 but didn't take it seriously for my symptoms. Now I think I actually need it. I'm going to definitely look into a pain clinic, I appreciate all of your suggestions! :)

2 likes
Reply

You are welcome

Reply

Those actually worked for me as well but they were very temporary....barely lasted days. I also tried Botox but that didn't do squat.

2 likes
Reply

Botox is supposed to work for spasticity in the muscle for what my physiatrist told me. He said you have to inject it directly into the spastic muscle. I have way to much axitity when it comes to needles to actually try it.

Reply

My dad had the nerve block done for his back. The second shot paralyzed his bladder, it almost ruptured before he realized that he hadn't urinated in days and had a lot of pressure. Had to go to the ER.

Reply

I don't have pain, but I attended a MS Self-Help Group last month and they had a pain specialist give a presentation. Have you tried seeing one? They might be able to help.

1 like
Reply

No I haven't! Thank you, I'm actually thinking about it. I've been on tramadol for 5 years and I'm sick of it

1 like
Reply

That never did anything for me. I give it to my dog for her arthritis pain and it does seem to help her, though. Go figure!

3 likes
Reply

Glad its helping SOMEONE haha

2 likes
Reply

LOL

Reply

You may also like...