My neurological symptoms started almost a year ago, and at first I only experienced burning feet at night that was more of an annoyance than anything. I was losing sleep a couple times a month, but my work schedule allows much flexibility so my way of life was not gravely impacted. However, the past two months have been a nightmare. On Jan. 25 I started again experiencing the burning feet but it did not go away, lingering all day and night for three days. On the third day of this "flare up" I laid down in the bed due to the impeding fatigue and a painful spasms or lightening shock ran through my right arm and my arms have not been the same since. They immediately felt odd and numb.*

Since they have become weak and my hands very clumsy. I am dropping things and legs feel like jello at times. Symptoms vary from day to day but for the past eight weeks I have experienced a combo of lightheadedness, heavy limbs, legs have become weak with exertion, strong heartbeat, muscle fatigue,muscle twitches all over (randomly), some neck and facial muscle fatigue (especially after talking a lot). Within the past couple weeks my hands have started to burn as well.*These are just those tgat have stuck, some symptoms have come and gone and new slight thingspop every other day. This week I have experienced more back back in addition to burning and tingling has become more prominent in lower legs. Physical exertion seems to trigger symptoms along with computer work making my arms give out and go numb in hands.

I have been to my primary doctor 6 times. Tested for many things and ruled out a lot.. Had a brain MRI that was clear, so no MS. B12 okay (450), high alpha gobulins, cortisol spike (looking more into this in 24 hour urine analysis- JUST RECEIVED WORD THAT THIS TEST IS NORMAL), high Mch in total blood count. Other than that all is normal, no lyme (so I think, but I know this is controversial), no rhum art, lupus. I was put on Lyrica, low dose and slowly increased. Didn't see much of improvement for a while. Upped the dose, it helped the burning feet but I felt immense brain fog. I couldn't focus and was not myself. Lowered the dose as of now because I do not want to become immune and dependent on the med until I KNOW what is wrong! I am not one to be highly medicated or cover up symptoms without knowing the cause. I am being referred to a neurologist, but who knows when that appointment will come through. Hoping to get a call sometime this week. Any ideas, suggestions, thoughts, words of encouragement would be great appreciated*

Hi Emily,

Your symptoms sound a lot like mine although I would have to add in a weird crawling icy sensation in my legs all through the days. I've suffered from this nerve related stuff for at least four years. About a year into it all my menopause was well underway and then my joint pain started up acutely. After this I was eventually diagnosed with Rheumatoid Arthritis and the nerve symptoms came and went alongside my rheumatic ones. However I am equivocal for autoantibodies. I did take three DMARDs over three years including injectable Methotrexate - and like yourself I'm terribly averse to drugs and also very intollerant. I came off them all eventually for this reason and the RA symptoms have never returned.

But the neuropathic symptoms, similar to those you describe, have gone from strength to strength over the last year and I have had many investigations - so far none have revealed anything. It is classed as a mild idiopathic small fiber neuropathy to date.

I take it diabetes has been ruled out and that you have no other worrying symptoms such as rashes?

My rheumatologist has agreed that in my case it probably is part of my multi-system autoimmune disease because I have a high ESR and other inflammatory markers and my rheumatoid factor fluctuates but was raised above normal when my symptoms started. I also have Hashimoto's Hypothyroidism of many years now.

One of the many things I've learned from this forum is that the amount of nerve pain does not necessarily equate to nerve damage - in fact numbness tends to represent a more advanced type of neuropathy than pain. I always think it's like when a tooth is dying and the pain is awful - but once it's died then the pain goes and root canal treatment can be done without any local anaesthetic. Push this up to a grand scale and to me this is how it feels. I have just had a skin biopsy taken from each leg and am hoping something shows up but have been warned it probably won't - and even if it does it won't actually show the cause.

I agree about symptomatic treatments such as Gaberpentin - which I tried too but was like a drunk and angry so only made it up to a medium dose before having to stop. I also tried (and loved) Amitiritpyline for 3 years until finally it stopped working and started causing severe heart palpitations so I stopped and had a giant flare up afterwards. Also I've taken Cymbalta for four months and had to come off this too for the same reasons you outline - I don't want to take anything until I know what's causing this problem. I don't mind so much with RA/Lupus drugs because they are addressing my autoimmune process at source but symptom treatments and me just don't work. I find magnesium spray helps somewhat and also take AdCal D3 and B12 sublingually although mine isn't very low. I have recently passed from extreme burning pain in feet and legs to very little pain but lots of cold numbness. A new phaze is born!

Good luck getting to the bottom of it all - I'm afraid I haven't got there yet but I never give up hope that I will.
Warm regards, Mat

I have had sock and glove neuropathy of unknown origin since Dec of 2014. The symptoms began in mid Sept. I, too, have been tested and tested, including nerve and muscle biopsies. I take gabapentin (2400 to 3600 mg) per day and 60 mg of cymbalta. Gabapentin alone did not help me. Coupled with the cymbalta...it really helped. Everyone is different with meds. The acute phase of my neuropathy was very painful. I had an episode of pain approx 3 times a week until this week. I am doing beginner yoga and I feel so much better. I may be on the road to recovery. Good Luck and God Speed!!

I Mat,

It is so nice to meet you. I have always liked to be in control and have a "life plan", but boy has this illness thrown a curve ball in my plans!! So many emotions come and go and that can be difficult to manage, especially on top of the physical pain and crazy symptoms. I have seen how bad rhum can be. My grandmother suffers from that as well, so I pray you stay strong. I see so many people on here that never find answers and that really scares me. Especially hearing some say it could be the dreaded diagnosis of "fibro", but if that is what it is then I guess I will deal with that. I think now I am content in whatever happens, or maybe I am just waiting for the ceiling to drop. Maybe I am becoming emotionally "numb" as well. LOL. I have to make light of the situation and find humor to get me through. Just like when I was around my maternal grandmother today, which is 80, and she was getting around better than me at 26!!
Diabetes has been ruled out and no rashes. I always get red blotches after baths or showers, but that is nothing out of the ordinary for my sensitive skin. I did find that I was contact allergic to coconut oil or products containing coconut, so after stopping using them my skin has gotten much better. I really like your analogy of the tooth ache and the differences in pain vs. nerve damage. Makes sense. I have also become more educated on the perceived vs. clinical muscle weakness. Thinking mine may just be perceived? Anyways...I am happy to share stories and hope to talk with you soon.
Emily

Hi,

It is so nice to meet you. Sounds like you are pretty new to all this too. Glad to hear that you are starting to feel some better!! I am wanting to get involved in yoga as well. Prior to the madness in my body, I was very physically fit. I am a wildlife biologist so in the summer I am hiking rough terrain for five hours per day. No problem, slight back pain some days but overall I feel the most healthy in the summers. Lately, the neuropathy has had me DOWN. I have to have my mother help me get groceries or I will not make it out of the store. I don't drive long distances because my arms tire or my hands go numb. I was once a independent 26 year old starting a career. I have been confined to my home doing computer work for the past two months due to this illness. Such a lifestyle change!!! I am now getting depressed knowing that my body is not going to allow me to do the job I love. No way, no how at this point. And yes, I am very stubborn when it comes to taking medication. The 200 mg of Lyrica I am taking now impacts my mood, intellect, and overall self. At 300 mg per day I was zombie like and couldn't focus to save my life. I just don't know how to juggle the good and bad of medication. I am going to try to start some yoga this week and see how my body responds though. I guess I have been scared to exert my muscles lately due to the feedback my body gives me at night after a long day:cramps, more numbness, back and neck pain. It just isn't worth the fatigue and pain, but I think incorporating some low impact exercise is going to at least work wonders for my mind! Thanks for sharing your experience with me. I look forward to hearing back from you.
Emily

Hi Emily,

Sorry you find yourself here. You're in good company, and many of us are idiopathic just like you (so far).

One thing you might want to look into while you're waiting to see the neuro is Alpha Lipoic Acid, or the more bio-available version R- Lipoic Acid. Some people think it's helped their neuropathy symptoms, and I guess I'm one of them. Nothing else has made a dent as far as I can tell, but I'm pretty sure my nerve pain dialed back a notch when I started on it last summer. You can read about it here:

http://umm.edu/health/medical/altmed...phalipoic-acid

The best thing you can do for yourself right now is anything you can to keep your anxiety levels down. I know that's really difficult because I was right there with you a year ago, but try. Anxiety will make your symptoms ten times worse. If you're good at meditating, do it a lot. Try a warm soak in an epsom salt bath too. Some people with PN can't tolerate a hot bath, but it feels great to me.

And here's something else you can try:

http://www.amazon.com/Morton-Epsom-L...om+salt+lotion

This is the R-LA I take:

http://www.amazon.com/Doctors-Best-S.../dp/B000I4C19G

If nothing else, trying this stuff will make you feel like you're doing something.

And BTW, I'm right there with you on not wanting to medicate to just deal with symptoms. I was on a gabapentin for a few months, but have gone off it now.

Janie