[WVKayaker]

Hello, I'm new to the forum. I'm trying to find info on peripheral neuropathy and possible causes.
Background: I'm a 37 yo female that has been active an in good health up until the fall of 2013. I started having hip pain in Sept 2013 after a trip to the beach and attributed it to tendonitis from the long car drive. The hip pain lingered. In early October I went on a cruise and when I got back I started to have a lot of problems:
Extreme fatigue - lasted for about 3 weeks - so tired I could barely function at all
Headaches - I had trouble with migraines in the past but hadnt had any since 2012 and suddenly I was having a lot. Also having a lot of tension headaches.

Neuropathy - It started in the toes of my right foot as a tingling/numbness. Spread to both feet, then both hands. Worse at night. By november it had spread up both arms and legs and sometimes my face. By late December it wasnt much tingling - it had changed to a burning pain in hands and feet that was accompanied by shooting pains at times that would go up legs and arms. Also, randomly I get the feeling that part of my body has been plunged into freezing water. Early on I would get strange feelings like someone was pressing their finger on a part of my face/lip/nose. Havent gotten that int he last month.

Joint pain - Hip started in Sept. After the neuropathy I started to get pain in my rt knee, then ankles, then it moved to hands and other knee. At this point I have pain in all my joints but it is transient - it may hurt in my knee and hip and hands in the morning, elbows and wrist this afternoon. THe joint have not swollen or gotten red.

Eye twitching - Left eye started twitching in Oct. Twitches more than 50% of my waking hours. Right eye has started in addition to left in early Jan and they both twitch at the same time now.

In November I went to my family doctor she said that my symptoms were consistent with peripheral neuropahty and she wanted to find the reason, if any. She ran a battery of lab tests to check for vitamin deficiencies, thyroid, diabetes, etc. She said she was trying to eliminate the "easy to fix" problems. All tests came back normal. She also tested my urine for protein and ran tests for Lupus, lyme disease, RA, etc. All of those were normal. Based on the symptoms she referred me to a Rheumatologist. I waited 2 months to get in to see him and was pretty underwhelmed. He said he had no idea what was wrong with me and my symptoms dont make any sense. He said if he were to guess he would say my joints pain was due to hypermobile joints and his only real concern is my neuropathy. He said that he hasnt had much luck with Neurology consults int he past so he was just going to send me for a nerve conduction test and put me on Cymbalta for the neuropathy and follow up in a month to see how the Cymbalta was working for me. He ordered no labs/tests except for the EMG test.

I'm tired of being in pain and I'm concerned that there is a problem that needs addressed. I love my family doctor but was very underwhelmed with the Rheumatologist. He didnt ask any family history and didnt really ask that many questions about my symptoms. Should I go back to the GP for a referral to a neurologist or just wait the month to see what the EMG shows?

Thanks!

[Synnove]

Hi WVKayaker
Your story is similar to mine, the difference is that I have gone throught a long list of doctors and tests.

I am not a doctor, but to me it sounds like you ought to get a rheumatologist to. All thees joint pains. I have learned from my doctors, personal experience and research that very oten it happens that many of the bloodtests shows up negative, sometimes false negative. Somtimes the tests needs to be repeated over and over. Theese conditions like neuropathy and rheumatoid arthritis and other autoimmune disorders flares and have remission. There are a lot of autoimmune disorders that has your symptoms. Neuropathy can be caused by arthritis and so many other autoimmune disorders.
My symptoms started with first small burning pain in legs for months, then I got all kinds of symptoms, vasculitis included. The jointpain that I will describe as migratory pain, because I had 2 extreme episodes of flares that moves from one joint to another all over.At the same time I had burning pain that ,just like you, went all over, face and scalp included. I had 2 episodes at first treated with Medrol Dose Pack, steroid. Then the rheumatologist started me on immunosuppresive meds, and sometimes with flare ups, I have some Prednisone.
So, all this time, 1 1/2 year now, my rheumatologist has tried to find different causes for my terrible neuropathy.
It sounds like you have Small Fiber Neuropathy. That is was causes the burning pain in your cutanous tissue.
You should have a real good neurologist to refer to. See if you can find one at the nearest teaching hospital where you live.
Get one that specializes in Neuropathy.
There is medication that can help the pain, but it is important to to try to find the cause, so the underlying condition can be treated.

You also should have the neurologist do a punch biopsy to check for and/ proove the case of Small Fiber Neuropathy.
My rheumatologist just told me now thar she think that the rheumatoid arthritis can have been the cause of the neuropathy, together with the vasculitis
I wish you all the best

[Synnove]

I read your post over again, and now I see that you did see a rheumatologist.
Perhaps, if you did not like this doctor, there might be another good one in your era?
And I would insist with the PCP that you have a neurologist on the case working with you. If your regular doctor does not agree, then perhaps you should find another primary care doctor.
There are many good smart people on this board that will give you some links to good references on neuropathy.

[zookester]

Originally Posted by WVKayaker

Hello, I'm new to the forum. I'm trying to find info on peripheral neuropathy and possible causes.
Background: I'm a 37 yo female that has been active an in good health up until the fall of 2013. I started having hip pain in Sept 2013 after a trip to the beach and attributed it to tendonitis from the long car drive. The hip pain lingered. In early October I went on a cruise and when I got back I started to have a lot of problems:
Extreme fatigue - lasted for about 3 weeks - so tired I could barely function at all
Headaches - I had trouble with migraines in the past but hadnt had any since 2012 and suddenly I was having a lot. Also having a lot of tension headaches.

Neuropathy - It started in the toes of my right foot as a tingling/numbness. Spread to both feet, then both hands. Worse at night. By november it had spread up both arms and legs and sometimes my face. By late December it wasnt much tingling - it had changed to a burning pain in hands and feet that was accompanied by shooting pains at times that would go up legs and arms. Also, randomly I get the feeling that part of my body has been plunged into freezing water. Early on I would get strange feelings like someone was pressing their finger on a part of my face/lip/nose. Havent gotten that int he last month.

Joint pain - Hip started in Sept. After the neuropathy I started to get pain in my rt knee, then ankles, then it moved to hands and other knee. At this point I have pain in all my joints but it is transient - it may hurt in my knee and hip and hands in the morning, elbows and wrist this afternoon. THe joint have not swollen or gotten red.

Eye twitching - Left eye started twitching in Oct. Twitches more than 50% of my waking hours. Right eye has started in addition to left in early Jan and they both twitch at the same time now.

In November I went to my family doctor she said that my symptoms were consistent with peripheral neuropahty and she wanted to find the reason, if any. She ran a battery of lab tests to check for vitamin deficiencies, thyroid, diabetes, etc. She said she was trying to eliminate the "easy to fix" problems. All tests came back normal. She also tested my urine for protein and ran tests for Lupus, lyme disease, RA, etc. All of those were normal. Based on the symptoms she referred me to a Rheumatologist. I waited 2 months to get in to see him and was pretty underwhelmed. He said he had no idea what was wrong with me and my symptoms dont make any sense. He said if he were to guess he would say my joints pain was due to hypermobile joints and his only real concern is my neuropathy. He said that he hasnt had much luck with Neurology consults int he past so he was just going to send me for a nerve conduction test and put me on Cymbalta for the neuropathy and follow up in a month to see how the Cymbalta was working for me. He ordered no labs/tests except for the EMG test.

I'm tired of being in pain and I'm concerned that there is a problem that needs addressed. I love my family doctor but was very underwhelmed with the Rheumatologist. He didnt ask any family history and didnt really ask that many questions about my symptoms. Should I go back to the GP for a referral to a neurologist or just wait the month to see what the EMG shows?

Thanks!

I am so sorry, you story is heartbreaking for sure. Have you been checked for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)? or MS? If you have a PPO health insurance plan I would self refer to even a couple Neurologists and Rhuematologists several opinions or "eyes" can't hurt and it sounds like you haven't had the best care so far. I really hope you get some answers soon. In the mean time try looking at your eating habits and see about eliminating inflammatory foods that might trigger some of your symptoms. Also, B12 (liquid) drops taste good and can't hurt but likely will boost your energy levels at the very least.

Take care