burning feet, then hands now skin!! - Neuropathy Message Board

sitlos1971 · 01-24-2009, 10:56 PM

Does this sound familiar to anyone:
Last March started with burning, aching feet after exercise (running). Then it started spread to my hands. Intermittent burning, numbness, aching pain. Eventually couldn't walk or stand for very long without aching pain. I get pins and needles MUCH more quickly than I should (if I sit on my knees). Pain has now spread to my skin. Lower and upper back, back of arms, back of legs and buttocks feels like a really bad sunburn. Was intermittent but now is fairly constant. Usually if pain is bad in one area, then it is less painful in other areas?? But not always. I'm 37. My Dad has the exact same symptoms - his started when he was 47 (he's had it for 14 years and STILL has no answers). I've had an EMG, MRI and tons of blood tests. All normal.
Not sure what to do now?? The more forums I look at the more I see other people with similar symptoms or other symptoms who've all gone to countless doctors who are mystified.
Can anyone at least suggest the right type of doctor to go to next? I've posted here before but have not gotten any answers. So if you can offer any suggestions, please do. I want to be able to be a good husband to my wife, a good father to my kids and be able to continue working full time to support them.
Thanks for any advice or next steps you can offer.

anwise67 · 01-25-2009, 06:34 AM

Hi. You really need some answers so I'm going to try to help. My SFN started the same way yours did. After exercise(walking two miles) my feet would burn and in appearance were red and swollen. The EMG/NCV, blood test, etc. will not show up SFN. You need to get all of your test results and get ready to go to a doctor that can help you. Look up the company Therapath Laboratories(HQ in New York) and get their phone number. I talked with a lady named Elizabeth. If you call them then they can fax you a list of physicians who perform the skin biopsy in your area. You have to tell them that is what you want!! Be prepared to travel. I take a 5 hour trip one-way to see the neurologist that did my skin biopsy. These doctors will recognize your symptoms and if it is not SFN you need to know that as well. In your earlier post you said that you wanted to do this without medicines b/c of how pain pills had affected your father. There are more options out there now for you and for him. I was where you are, not wanting to take meds, but with this illness that is just not possible. I hope this helps. allie

2morrow · 01-26-2009, 02:37 PM

sitlos - I have been following the sfn threads because I too have widespread neuropathy - I'm 48 and this all started last June (08) - I was physically fit - no pre-existing health conditions, no drugs - just hit by a wall of stress that led to strange CNS sensations and episodes of acute pain. So perhaps the onset is unlike others on this site but the aftermath is very similar. I've lost 20pds, nervous system has shorted out - feel like I can't stand up or walk somedays. I have yet to receive a Dx - it may be a complication of shingles... but it has definitely been exacerbated by Neurontin (Gabapentin) and by an appalling attitude of indifference and apathy from the medical system here in this province. I am essentially self-diagnosing and self medicating, and I am drawn to this sfn community because of the similarities in symptoms and the struggle for Dx and treatments. But more than that - this group has articulated the issues so succinctly. Everyday I am presented with new and disturbing sensations - I try to journal it - to retain my sanity but trying to explain it and survive it - a nightmare.

sitlos1971 · 01-27-2009, 12:00 PM

Hi 2morrow -
It seems were in a similar boat. I agree, one of the hardest things about it is feeling so alone and many doctors don't want to deal with you - or even explore. It seems strange that they wouldn't WANT to figure things out beyond their own knowledge, not just hope you fit into a neat and tidy diagnosis that they can then throw some medications at. VERY frustrating. So like you, I am trying to self diagnos and do this myself.
I will pass along anything I find helpful - are you living in BC?
I've found another site that might be helpful: [url]http://www.rsdcanada.org/parc/[/url]
check it out - not everything coincides with my symptoms but maybe you may find something to add to your "aresenal".
I take hope in KNOWING that I can figure this out and so can you! Being persistent will pay off and even if there is no "cure" I am confident that we will be diagnosed and can understand how to "live" with this - truly LIVE, not just survive. May you find peace in your body - even if just for today.

Aussie100 · 01-27-2009, 02:20 PM

The best type of doctor to see next to give you the best chance of finding the cause is a neuro that specializes in neuropathy, who ever sent you for an emg or nerve conduction test for typical small fibre symptoms sounds pretty useless, the first test should have been a skin punch biopsy if available or quanitive sensory testing if not, i had the same trouble when i first got small fibre symptoms most i seen didn't have a clue, it was very dissapointing to say the least.

good luck
Aussie