What do you do when your neuropathy is bad?

[SickMomma_PDX]

I've got neuropathy in both hands (worse on left) and my left foot/leg.

On good days/hours/minutes, it's a mild tingling or even sometimes a throbbing/pulsating sensation.

When it's bad, I feel like I'm putting the affected limbs into an Iron Maiden. It *hurts*. It's more prickling than tingling, and it's crazy-making.

I don't know that this is caused by MS -- and in fact the general consensus here was that my brain MRI was unlikely to be MS (which I consider good news! thanks!) -- but I figure there's definitely people here who cope with a similar symptom.

So what do you do when you have that painful prickling sensation? Is there anything that makes it feel better? Anything that distracts you from it enough that it fades?

I'd be really grateful for any advice (and if I should be posting this in a different forum, just let me know!).

Thanks so much --

--SM

[saveone]

What about Lyrica?  My GP mentioned it but I opted for the increase in dosage of neurotin.  I have found some relief but it is still there.

[SickMomma_PDX]

Thanks for the feedback! I'm already on the maximum dose of Cymbalta (120 mg). I've never noticed any pain relief from it, but I've been on it long enough now that I don't know how bad I'd be if I weren't on it. :)

It definitely helps me with mood. I asked to go on an antidepressant about three months after I got sick with my mystery illness, when it became obvious that I wasn't going to be all better in the immediate future. Also, I was on some fairly high doses of steroids, which made me want to kick my cat and put my kid in a permanent time-out. Cymbalta definitely mellowed me out with the steroids, and also helped keep me from being too weepy. I do want to ask my doc about backing off my dose a bit because I fear it's contributing to my tachycardia.

I'm happy to report, though, that my paresthesia/neuropathy/whatever you call it has mellowed out to a more tolerable level. I'm hoping it stays that way!!

SZM: Thanks too for your suggestions! I've been trying to stick to the squeezing instead of rubbing/scratching, and I think it does help some. If nothing else, I'm not tearing up my skin as bad!! I have not had a cervical spine MRI yet. I mentioned it when I saw my neuro recently, and I think we'll be discussing it and other tests she wants to run when I see her again in May.

Julia: I'm sorry -- I don't have any good answers for you. I just don't know enough -- I'm a newbie here myself. I do suggest that you post your questions in a separate post if you haven't already so that folks here see it and can respond. Everyone here has been so helpful to me, I'm sure they'll try to help you too!!

Thanks everyone!!

Aviva

[Ufrustrated2]

hey SickMomma_pdx,


I take Cymbalta that helps with my discomfort and irritability associated with chronic pain. It helps to a degree. It lessens the frustration associated with all this if that makes any sense.

At night I take Gabapentin to help with lack of decent sleep and the tossing and turning due to "cannot ever seem to get comfortable". I'm now at waking up about every 3.5-4 hrs whereas prior i would somewhat sleep for about 2hrs, wake up, toss&turn, stare into nothing in the dark, sleep, etc. So it helps. I tried it for daytime but it made me too groggy.

i tossed the towel in a year ago and take a pain pill periodically to help, and it does. didn't realize what a miserable-feel-bad-kinda-guy i was until i felt a bit better. ;-) at 53, i don't recover as well from pain. maybe i never did.

I go to the gym when ever I am feeling ok. Like today, no can do, home bound. Feel bad all over, especially the tightness in the lower chest upper stomach. harder to breath. nothing helps this but time. it comes and goes, no rhyme or reason, like many other symptoms with this.

i keep my mind active and challenged on projects - again when i'm feeling up to it. i'm trying to work on a programming project as i write this, but my mind just isn't into it. quite fatigued today and frustrated physically. this thing has really kicked my butt over the years and days like this remind me of it's grip.

[JuliaKC]

hi SickMomma - my mom takes neurontin for her idiopathic small nerve peripheral neuropathy and it works great. However, her dose is becoming extremely high I think, though it does work.

My mom is in her 60's and I'm wondering what the progression of this condition will look like. I can't find many answers about this. She now takes thirteen 300 (I guess it's milligrams) of the neurontin a day, in addition to other drugs.  She started at just three 100 mg's a day a few years ago, so this seems to be a quick progression to me.  How fast does the condition progress and will she eventually lose function of her limbs, like be in a wheel chair?  I'd like to know what to expect, so I can prepare accordingly.  Thanks to anyone who can help provide some answers!

[szm1980]

The way I was initially diagnosed with MS was because I had similar pain and tingling you describe. It's since decreased in severity (at the time I could not move my arm and my hand to eye coordination was completely gone), but I still do not have feeling in my right hand and at least once a week I experience a bout of really intense pain like you describe.

I find that 9 out of 10 times if I change my location to a place that is cooler in temperature, or take off a layer, I gets better. I also drink a lot of water throughout the day and this seems to help as well. Finally, instead of rubbing I've taken to squeezing my arm or having somebody else rub it for me (that way they will be gentler than I would be with myself), which I find seems to distract the nerves going haywire from their revolt. As a last resort I have neurontin, but I haven't taken it yet because I figure I've got enough crazy stuff floating around in my blood stream.

You mention not having signs of MS in your brain MRI but have you had a MRI of your cervical spine? I ask because my neurologist has pointed out a lesion on my spinal cord that corresponds with the area where the nerves that control the arms are located.

Anyhow, I hope this helps. Best of luck to you -- really.

[SickMomma_PDX]

Hi everyone,

Thanks for the helpful suggestions!

My internist has mentioned neurontin, But I haven't tried it yet. I guess I'll see if the neuro thinks it would be helpful when I see her on Monday.

I'm not sure if my stuff is that bad, or if I'm just a wimp. :)

Ren: I wish I could keep to rubbing. One of my problems is that I scratch -- especially when I'm not paying attention to what I'm doing. My hands look awful, with scabs from where I scratched hard enough and broke skin. :(

Quix: I haven't had EMG/NCS. I'm assuming that will be something the neurologist orders. (My internist hasn't wanted to order tests she thought the neuro would want to do her own of.) I wish I could hibernate for six months!! Best suggestion ever. :)

I'll have to look for tight fitting gloves/socks. Ice helps, as does very cold water, but only as long as I'm applying it. As soon as I stop, the prickling returns. Argh!

I'm sorry so many of us have to deal with this though!!

Thanks!

--SM

(Quix: I didn't realize you lived around here too! Small world! :)

[JeanieMarie]

I took Gab. for years.  After awhile, it lost it's effect and I moved onto Lyrica.  HATED IT!    My body does not handle narcotics very well, as they make me itch even with small doses.  My advise is what my doctor resently told me.  "If you do not use it, you will loose it."  Try to go for a walk, even if it is a short distance.  I also use 5 and 8 lbs. weights for a little toning.  I feel absolutely awful today and need to take my own advise to get out of this office for awhile.  Stay active.  Hope tomorrow is a better day.

[trueblue06]

Sorry,

Just re read my post. I started it and was interrupted and I've messed up the answer.

I meant Udkas, re the Neurontin, not yourself.

Oh dear I'm having a real battle ever since hospital.

Geez,

TB

[trueblue06]

Hi there,

I know just how you feel. It really is the most awful thing to deal with 24/7.

As sickmomma said, Gabapentin ( Neurontin ) seems to be the drug of choice.

I have been on this drug since February and I am getting quite good pain relief.

I also take  Endep  which is used for depression generally but does have the ability to reduce neuropathic pain. ( Amitryptilene )

This seems to help with my facial pain, probably because it knocks me out and I sleep well. It is still there in the morning.

Other than those things, there seems to be some good suggestions from the others which I haven't tried personally but may try in the future.

I hope that you can get some relief, it really is the most horrible pain.

TB

[rendean]

I have MS and neuropathic pain that presents in several forms. Pins and needles and tingling are the most common but at times I also have an achy feeling.

Quix mentioned most of the non-drug remedies. I do take meds for the pain but  it seems we haven't found the perfect combination yet. To ease the symptoms , I usually rub the affected area or apply warmth. The rubbing usually makes it bearable but it has become such a habit that others automatically know the tingling has returned because I  start rubbing the area.

A friend has diabetic neuropathy and she wears the tight fitting gloves and uses cold to control her symptoms.

Hope you find some relief. I do know how miserable it can be

Ren

[Udkas]

Hi,
I can relate to how you feel but your paresthesias sound much worse than mine.  I take Gabapentin and I find it takes the edge off my symptoms.  I only get mild tingling in my feet or hands but I do get a constant prickly feeling in my stomach from my naval down and around my butt..:-) it drives me insane but Gabapentin helps, infact at the moment I tried going off the Gabapentin  (Neurontin) but as soon as I do my pins and needles or prickly feeling comes back.

I too don't have MS but it works for me.

Good luck with it all.
Cheers,
Udkas.

[Quixotic1]

I don't have that kind of paresthesia, but I wanted to stop in and say "hi" and hope that the members that suffer so with them will answer you.

Things I've heard mentioned included warmth, cold, rubbing in IcyHot, tight-fitting gloves or socks, hitting yourself over the head with a 2x4, and hibernating for 6 months.  Are you on any meds for this?  Have you had an EMG/NCS?

Anyone else??

Stay tuned, Quix (from a fellow PDXer)