Here's a link to the company that did your skin biopsy (I'm pretty sure you said Therapath did it). Read the last paragraph about Prednisone and acute onset (which is what happened to you).

https://www.therapath.com/tests/skin...ber-neuropathy

It's about as logical as it can get...if the cause is inflammation, then steroids will likely help. Have you had a CRP or ESR lab done to check for inflammation?

I can't help but question this Dr. -- He is willing to inject a nerve blocking agent into your head.....but he is not willing to run a coarse of steroids for you?? Side effects from steroids are mostly from long term use. As a GP he should be quite experienced in prednisone use. Most GP doctors do not refer their patients to a specialist for prednisone.
Yes, for your neurological symptoms, you need a specialist, and it would be best if the neurologist would try something to help you, but since this isn't happening your GP should step in. Maybe you could find some information to show him that would help him with the dosing info.
I am 5'9" weigh 144, when I tried prednisone, my neurologist prescribed 60 mg for 3 months.

Hey, All... really, such good advice from you all to Canagirl and anybody else who experiences the misery of body-wide neuropathy. I have a few comments I just had to reiterate. The first is, one can't "cause" central pain syndrome. You positively can't do anything, even unwittingly, to cause this. I have gone to a well-recognized pain management doctor and seen a zillion specialists. The central nervous system responds to an insult, maybe prolonged peripheral nerve damage with associated pain, illness, stroke, or in my case a virus, that launches us into an errant pain cycle/response. So, any guilt or anger directed towards yourself is ill-placed. Sure, be angry that this dreadful condition has befallen you, but blaming yourself is wasted energy.
Second, fight as hard as you possibly know how to not let this steal away every bit of the life you have and who you are. It's been through pure personal steel and the grace of God that I have retained my employment and continued to be a single mother to two young children. It's amazing what you CAN do when you have no option, when you're desperately needed by those around you, and when you muster the determination to keep on living, despite the days when it's damn hard to get out of bed.
I remember when it all started with me, the panic and fear. The burning and paresthesia and muscle spasms spread through me like wild fire until, yes, it is absolutely everywhere, including my face, mouth, gums, teeth, throat, inner ears and nose. So, I really get it. I appreciate the other poster's comment that she thought she was having a stroke. I feel that way every once in a while still because of the intense paresthesia in my face, and my only consolation is I wake up every day still here... no stroke. Scary as hell, though! Even though the pain is still intolerable, at least I'm familiar with it. I'm on 1800 to 2100 mg. of gabapentin, and so far it's been the only med I've been able to tolerate, even though it definitely has it's side effects. I'm currently working through some other pain med options, but no luck yet. The balance that I need to strike between medication side effects and maintaining an active life is hard.
I kept hoping for the day this would go away, but I realize that isn't likely after many years now. Hope still creeps in every once in awhile, but at some point I realized that waiting to get better was getting in the way of coping with reality and living life, albeit a dramatically different life. Maybe you could just set small personal goals every day, especially goals associated with your child and husband, that could restore routine and even make you smile once in a while. Beyond the grief and fear and panic of what's happened to you (to several of us here), there can be moments of happiness.
And finally, my pain management doctor did make reference to this "burning out" possibility, too. He said that sometimes, with time, maybe significant time, the brain actually can rewire around whatever "misfiring" is occurring... sort of a self-lobotomy. Definitely not a sophisticated summary of what he really said, but hopefully you get the point. I can only hope.

After reading the discussion involving steroids it seems foolish not to try them
short term. It seems you can discover a lot via a positive gain or hopefully not, but even a negative reaction.

I hope that the increase in Gabapentin helps Canagirl. I can't relate on the bodywide front, but the relentless symptoms front, well over three years in, massive adjustments, some ebb and flow, flares like now.

Stress is a proven escalator for me. Takes a bad day and makes it putrid. Extrapolate as you will. There are some meditation threads in the chronic pain section I believe. I have tried working on mindfulness, with results varying.

Somedays I have what it takes to cope and others I don't.

Try the logical approach using literature from the company that tested you buopsy as enbloc suggested. It sounds, er sound.

Wishing you a respite,

Jon

Thanks everyone. I will keep pushing and I will show my neuro the info en bloc presented ( thanks for that. Although it's funny my neuro didn't know that considering it's the lab she uses). Can muscle inflammation ( from an injury in ur back) Be the pure cause of pn symptoms? If the steroids take away the inflammation could u be " cured" or much improved if the steroids knock out the inflammation for good?

My gp told me to stetch my neck and back with one simple excercise. I did that all day today and now in twitching and vibrating all up down my spinal cord and vibrating into my arms and legs ( new and different feeling than normal). Makes me think a lot of this is muscle inflammation

Each person responds differently to the steroids, so it is hard to tell. In an old cidp board I was on, there were people who improved dramatically on just a few weeks of them. Then others, myself included, they did nothing for.

They really only work IF the neuropathy is due to inflammation. And as we all know, there is MANY causes of neuropathy, so this may/may not help you...but I think it is definitely worth a trial.

But you are correct if the source of the problem is inflammation in the back, the steroids can reduce that inflammation and greatly improve your situation and pain level. But again, it comes down to inflammation and whether that is the true source.

Have you had a CRP or ESR lab test? These are markers for inflammation.

Keep in mind that steroids have some possible side-effects even for short term use. They MAY cause insomnia, weight gain, stomach upset, increases in blood sugar. And once your take them for more then 7 days, you MUST taper VERY slowly to get off.

Must you have CRP/ ESR levels out of whack to have inflammation?
Also, what ever is causing the inflammation is the culprit, so how can the steroids "put it away".
I know it can in some cases. My husband had horrible shoulder pain that would come and go for a year. He finally went to the dr, they prescribed the medrol dose pack and with in a week he was better and it never returned. This is why he thinks steroids are the answer to everything. I just think with a systemic think that is going after certain proteins or organs, I can't see how it can help.
Having said all of this though, I have just been rejected by my neuro to try steroids again. He still wants to wait. UGH!
I just don't know. I know that I could probably find a GP that would put me on in heartbeat, but I'm afraid because I had all of the symptoms you mentioned after 2-3 days and it was awful.

Hi canagirl. i would caution you against over stretching. The same thing happened to me when I started stretching the back of my legs to relieve pain. At first it helped and so I did it more and then it triggered my symptoms. It's the same with exercise. Some is good, too much is bad. Moderation for me is really key with this disease. I have always been a 150% sort of girl and really have had to hold myself back and slow down. :hug:

NO...CRP & ESR are just markers and sometimes reflect accurate levels of inflammation but they are by no means always right. It is quite possible to have inflammation without these markers reflecting it. But if it does show elevated levels, then her doctor would have more reason to try the steroids AND to continue to look for the culprit.