Prednisone today
 

i will be starting prednisone today. It is a taper back pack to see if I can get some symptoms under control. I asked for it and my pcp said " sure! You've been so sick for a year I think it's worth a try!" I don't see my THIRD neuro doc till the 14th. My first 2 told me I had anxiety! Finally I got one to do punch biopsy and results were positive for SFN. They offered me nothing for it. My left arm is weak and shakes. My left leg won't go when I walk so my gait is slow and unsteady. It shakes too. I have a feeling inside me like someone is shaking my insides and terrible pressure in my upper abs at times. My feet are quite numb most of the time yet very cold. It's been extremely debilitating. It started after a car accident a little over a year ago. I lost 50 pounds.....I'm freezing all the time. I have IC (interstitial cystitis) which contributed to the weight loss. I cannot eat processed foods or preservatives. I'm a total insomniac. Haven't been able to fall asleep in a year. My life has come to a complet halt. I have no strength left. Sooooo, wish me luck. I think I've got nothing to lose. Thanks for listening

Kate... You've been through so much. Yes, best of luck and a touch from God that you have some success. When I initially started with my neuro problems I was freezing all the time too. Also unable to ever fall asleep, lost 60 pounds in four months and have horrible pelvic pain on top of everything. Did you develop the IC along with your neuropathy or before it? I'm wondering why you can't eat processed foods and how it impacts you. Maybe that's part of why/what I'm going through and don't know it. Take care

Oh, one other thing.... Have they suggested a central mechanism for your pain and symptoms also, like fibromyalgia?

So sorry for your situation.
Yes, anxiety, anxiety. Wish the docs could come up with more than that. Especially an apology when you get a positive skin biopsy.
Hope the steroids help.

My ic was diagnosed in July of 2014 and the car accident was August 30 2014....my wrist repair surgery from the accident was September 4 2014 and ten days after that wham I quit taking pain meds is when the neuropathy just blew up. It started in my groin really. Like a seizing up of the muscles.i really have trouble walking. My left leg just won't go!!!! I was told in January that I had pelvic prolapse. Had cystocele and rectocele surgery in February 2015. Helped with heavy feeling in my privates. But still can't walk right. My left arm is bad and won't swing when I do walk. I've been to tons of physical therapy and have had dry needling for weeks and weeks. I had another surgery July 7 2015 for pelvic congestion. They put 4 coil and 2 stents in my varicose veins in my pelvis!!!!!!! I'm scheduled for another surgery November 11 to remove varicose veins in my left leg! I cannot take anymore. I am constantly under pressure on my left side and upper abs. Nothing helps. The reason I cannot eat processed foods is that it will bother my bladder. I have to keep my urine low acid. Sorry this is so long. I took 6 4mg tabs of prednisone this am ........ No change in symptoms. Thx! Pray for me. My hub and son are gone a lot so I'm alone. Used to be so active. Not now!

Positive thoughts your way Kate.

Oh darn.....what's a central mechanism? I do not have pain...just incredibly uncomfortable pressure in my upper core (and sometimes in pelvis). Right now my left hip is seizing. I just took some gabapentin. I am only on 600mg day and I also take 60mg of Cymbalta. And of course I take lunesta at night. Twice the recommended dose:confused: !!!!!!!!!

Rehab trained massage therapist and Chiro
 

Car wreck here also. I am sorry that you have to face so much at once. My attourney knew the misery that I was in and recommended the above mentioned hubby and wife team. You need some help to get you to doing better if you can find it. I have a newfound respect for Chiros after my experience. I don't know about dry-needling (Acupuncture?) but that masseuse chased the pain around and it helped. Good Luck, Ken in Texas.

Dry needling is not like acupuncture. It is VERY painful. I am considering a chiropractor but have always thought they were quacks because I had a neighbor who was one and he was a whack-a-dooooo! 'Guess I shouldn't judge a whole profession by one person. We have a great lawyer! Hah! Thx Ken. Like I said......I am not in pain.....except where my wrist was broken. I am uncomfortable ALL the time.

You've been through so much. I hope you get some relief. I see a chiropractor and do get some relief from it. Just like doctors there are bad ones and good ones and some that are just in the middle.

Hi Kate :)
 

Debi,

I too have severe SFN. I have tried all the typical pain meds there are and they have been no help at all. I am not taking anything for pain right now. Just spending a lot of time in bed. Since I have tried everything except prednisone and was thinking of asking my doctor to try try it. But after reading all the problems prednisone can cause, I really have second thoughts about trying this.

You said that you have taken it twice a year and it helps. It seems that you are saying that this is just a temporary fix to get through a week. Do you mean that the rest of the year you just suck it up a suffer? This isn't a long term fix?? To me being pain free for 2 weeks a year isn't worth even trying. Or do I misunderstand you?

Anyone else with SFN use predinisone long term? Are the side effects really as bad as I read?

Sorry....my brain isn't working correctly these days :)

I'm on BuTrans pain patch, 20 mcg/hr that I replace with a new patch every 7 days. I am also oxycodone 10-325 - 3 a day as needed for pain.

Prednisone is not a drug I would want to be on full time. Too many side effects that are pretty serious in themselves. It's my understanding if you can stay under 10 mgs a day it's not as damaging. I only know that from working with a lady that had lupus and she was on 10 mg maintenance dosage.....said she had to take higher doses when she flared. And yes...as far as I know it is as bad as you've read about.

I was in bed or on the couch prior to going to a pain mgmt. dr and being placed on BuTrans and oxycodone....before that I was only on hydrocodone and that just wasn't enough for pain relief.

I was unable to drive but can drive short distances now. I could not shop at the grocery store....I still don't go to a big store but can manage a small grocery store or a small dollar store. I could not walk far or stand for any length of time. I still have to be careful with both of those but it is better.

I still cannot overdo and if I do I'm in the bed for days trying to recover. Weather, especially this damp, misty weather, really increases my pain.

Hope this info helps you and let me know if I can answer any other questions for you.

Debi from Georgia