Help for pain!!!!
 

I haven't been officially diagnosed with sfn yet.And won't know until after June 15.I am having that uncomfortable burning pain all over lately.What otc medicines or creams work for some of you?Should I call my neuro to ask her for something to treat my symptoms?I can't just easily make an appointment with her because it is far away and I have transportation issues.Please help.I take hot showers for temporary relief and yes I know heat is bad for nerves but it's the only thing that takes the pain away for a moment.Our ER is ignorant and tells me everything is anxiety and so does my regular doctor which I will be getting a new doctor in June.Please any ideas would be appreciated.I feel like death!!

Hopefully you wont get diagnosed with snf and your issues are temporary.

I am afraid if there was anything over the counter that worked, most of us would be using it and buying stock in the company. There isn't much prescription stuff that works either. I think most people take neurontin, lyrica, cymbalta or opiates....and those don't really take away pain.

Most of us have tried just about everything.

For all the pain that neuropathy causes, it gets very little public attention....

Oh no, that answer sounds bad.I can not believe they haven't found something that takes away nerve pain completely.I can handle the dull everyday pain I usually have.I've just become accustomed to it.I feel like ripping my skin off when it feels like it's on fire from the inside with intense pain.Those medicines you mentioned can sometimes do more harm than good.I'm deathly afraid of trying them however if it helps this all over burning I'm up for some neurontin!!!I pray I don't have sfn either but all signs point to it.I feel such empathy for those who actually have it, words can't even express how sad that makes me, feeling what you go through and knowing it's only going to get worse or at best stop where it is if you're lucky.I'm not diagnosed yet and I may not be,hopefully.But I feel what you feel as in symptoms and that is no way for people to be expected to live in that sort of uncomfortableness and pain.Yes lets hope this past year has just been something temporary or something entirely different causing neuropathy symptoms.The other day I thought I would be happy having a diagnosis of sfn until I really thought about it and got scared.Nerve damage symptoms fine, actual nerve damage bad!!!!June 15 can not come soon enough.Thanks for your honest answer cyclelops.

not so fast...another perspective
 

Hi ANS,

Over the course of my life so far, I've had scleroderma pain; sciata pain; birthing pain; cervical disk pain; lower back pain; toe pain, and constant Parkinson's pain not properly diagnosed until last year, not to mention spiritual pain and general angst, which, since I have time to notice it, means my life isn't as bad as you may be inferring right about now. To ease it I have logged more than 5,000 hours of yoga, swimming, massage, physical therapy, speech and swallowing therapy, meditation and Tibetan chanting. Almost all of my doctors were unable to find or explain a cause; some of them clearly thought it was psychogenic. Then I got wise. Just like general neurologist was unable to spot early onset Parkinsons in me that is clear as a bell to every neurologist with a movement disorder specialty, I had to go to a PAIN MANAGEMENT SPECIALIST to begin to grasp the causes, mechanisms and treatments of my pain. The field is too new and too rapidly developing for general docs to stay current. Bottom line: some of those meds work really really well for many folks; there are more options; and, the only way you'll get through it is if you do your own research and work with a pain management doctor (along with whatever specialist convinces you of a diagnosis). If you already have a PM doctor and still are experiencing unrelenting pain, tell him or her that your treatment plan is insufficient and tweak it together. Or find a better doc. BTW, seeing a pain management doc was the smartest decision I ever made. I still have pain but it is much reduced. I also find it dissipates when I am creating. Do not give up! Good luck on the 15th.

I feel for you!
 

I felt the need to post to let you know how much I sympathize with you! I have intense burning-type pain all over my body. I'm taking neurontin, but the low dose isn't doing much, if anything at all, and higher doses give me severe migraine headaches. I recently visited a pain specialist hoping for any information about how to minimize this terrible pain. I'm limited in my medication options because I cannot swallow pills and most of these medications don't come in liquid. I'm trying tylenol with a low dose of codeine now. I'm deathly afraid of becoming addicted, but am completely helpless under this monster of pain and need some type of relief! I truly feel for you and for all those who are unfortunately experiencing pain. It's not a way to live. Really hoping you all are able to get help with your pain.
Miriam

Sunshine.....it won't hurt to try the lyrica or neurontin.

As another poster said, they don't have pain when involved in some creative endeavor....I too have found that helps...however, the next day, I can bearly move and pay for my creative endeavors. But, at least you are distracted for a while.

It is a matter of finding balance between activity and rest, between tolerable pain and intolerable pain.

Anxiety is the WORST. I avoid toxic people and toxic situations like the plague. I remind myself that for millenia, people have coped with neuropathy.

And, like the other poster....I use a well placed hydrocodone (vicodin).

I am sure their are a million alternative treatments you can try too.

We all come to this forum hoping we can find an etiology, then a cure, or at least a decent way to manage this, and the fact is, many find no etiology, no cure and treatment is hit and miss, with a great deal of personal experimentation.

Finally, after 5 months...
 

I gave in to taking 'gabapentin'. I was started on small doses, had some kind of heavy sleep that I badly needed, because my BURN was the absolute worse when I went to bed at night. Many, many nights I had to get up and walk around for a couple of hours in order to tolerate the agonizing pain. I would finally get 'the freeze factor' starting on my legs, and would go back to bed for a couple hours of rest.

My mother had put the 'fear of GOD' in me when I was a girl, and I have never trusted the fact that so many meds turn out with horrible results. However, when the agony was dominating me, trying to cooperate with my Dr. seemed to be the WISE thing to do. I am getting a little help & hope.

I have been diagnosed with "S F N Poly Neuropathy".

Best wishes for pain relief soon.

Best of luck for June 15th, try to get a pain management doc as has been sugested here, I have just had one consultation with mine and have high hopes.I am having lidocaine infusion in a few weeks and cant wait.
Arlene:)

I'm new to the forum but will post this reply for what it's worth.

I have suffered from a Peripheral neuropathy for years and use to have that burning feeling on the tops of my feet, especially in hot weather and more especially after taking a walk. My regular physician told me to use Zostrix Cream (over the counter medication). He said it would take several days to start working but should, in my case, relieve the burning sensation and it did. I know apply enough to the tops of my feet once a day to cover (not too much) and for the past 10+ years I've been pretty much pain free from burning feet. Other than that I get pains in my feet and lower legs (that irritating feeling one gets) that sometimes keeps me from being able to get to sleep at night. I guess my doc knew I wasn't the type of person to take advantage of a medication and so prescribed Percocet. I take 1/2 to 1 tablet, only when needed, about 1/2 to 1 hour before bedtime and am able to get to sleep without any problems. I realize this medication isn't for everyone as it’s a narcotic but in my case it certainly helps and I'm very careful to use this drug in moderation.

I do hope your doctor can prescribe something that may give you some relief; I do know how one can suffer from nerve pain, no fun at all!

Best of luck!

Hello Arlene
 

Good Luck with the infusion! PLEASE keep us updated on your results!
I am very interested in knowing if this helps with bodywide pain conditions. And if so, is it very longlasting relief??

Caring
Rae
:hug: