Burning all over: statins, campylobacter, MS or what

[OldAlly]

I know there are a lot of reports of `burning pains' on this website. Here is my story.
It started 9 months ago. I felt a strange prickling sensation in my right arm, shoulder and neck. The next day it had gone. Then it came back and began to spread to other parts of my body. It has been around most of the time since then and has visited just about all parts of me. Sometimes it feels more like burning (particularly in my feet, where it is intense). Sometimes it is accompanied by very sharp pin-***** pains. When it is in my face it feels a little like after the dentist has used an anaesthetic. It tends to subside overnight and return next day (with an onset in a matter of a few minutes).  Other symptoms include stiffness in my wrists; occasional cramps in fingers and toes; and a vague sense that my arms are a little out of sync with what I want them to do.
I saw a neurologist six months ago who told me that he thought there was nothing sinister afoot. I am waiting for nerve conduction tests. I had one test for Lyme disease which came back negative (should I trust it?). I've I stopped taking statins (which I've been on for 4 years) having read some of the side effects. The only other relevant history is that I had a bout of reactive arthritis 2 years ago after a campylobacter infection; my knees were large for a couple of weeks, but then I seemed to get back to normal.
I'd be interested to know if any of this  seems familiar to anyone.

[ileneh]

I'm having similar symptoms. The intense pain started in my heels and i was immediately misdiagnosed with "plantar faciitis". After a years worth of non-responsive treatment, my dr. finally decided something else was going on, since then, the pain has moved up my legs and into my hips and lower back, the burning is excruciating. I've had all the tests, nerve conduction, blood tests, MRI's and nothing seems to show any kind of cause. The pain is worst in the areas that take the most "body weight", ie, feet and buttocks. I'm on 3200mgs of Gabapentin(nuerontin) with no adverse side effects and it helps a little. I've been going to Stanford Univ. for the past year and they now have me on Mexiletine which helps significantly but hte side-effects are tough. I will be 52 next month and can't imagine having to continue the rest of my life with this pain...so I know how you feel.

[Carol in PA]

OldAlly,
The pain you describe sounds like neuropathy.
Here is a page with some info:
Neuropathy, Signs and Symptoms
http://www.neurologychannel.com/neuropathy/symptoms.shtml

They were right to test you for Lyme Disease, as Lyme can cause neuropathy.
However, I bet they used the ELISA test, which misses at least half of known Lyme cases.
Even the Western Blot tests for Lyme only check for a couple strains, and there are several hundred strains.  

This means it's possible you have an infection with Lyme bacteria, and they just haven't found it yet.
This happens more often than you would believe, and it will take some effort on your part to investigate the possibility.

Read the info and symptoms at the Canadian Lyme Foundation.
Ask questions about getting the right tests done at the discussion group,  LymeNet.org.

Wishing you the best,
Carol

[Lily51]

I have a confirmed diagnosis of Lyme disease and experience almost all of the symptoms you describe.  It took almost 10 years to get an accurate diagnosis.   The first test I took came back negative so the Dr. dismissed Lyme Disease even though I had been bitten by a tick years earlier and had just returned from living in Philadelphia for a year.  I kept getting progressively worse and finally sought help from other doctors who also dismissed Lyme based on the initial test.

Finally, I located a doctor that specializes in Lyme Disease. He recognized the symtoms right away and ordered tests from a lab that specializes in Lyme disease.  Needless to say - I was positive.  I am now on antibiotic therapy and have just started nuerontin for the neurological problems.  I am happy to say that I am beginning to respond to treatment and now have almost as many good days as bad.  

If you suspect Lyme Disease DEMAND the appropriate tests.  According to my doctor, Lyme Disease is very difficult to diagnose in blood tests and there are only a handful of labs in the U.S. that specialize in testing for Lyme.   Post back if you need a list of the labs and I will get them for you.  GOOD LUCK!!

[HJane]

Here are some other things that can cause neuropathy:
1. Monoclonal gammopathy
2. Lupus
3. CREST syndrome
4. obstructive sleep apnea
5. hypothyroidism
6. celiac disease
7. diabetes
8. Lyme disease (try one of the other tests for it, just as a confirmation)
9. syphilis

You should take this list to a rheumatologist and ask to be checked for all of them.

[patsy10]

Maybe the campylobacter and swollen knees was really lyme....I have all your symptoms and more.  My arms and legs feel like they are not connected to my body or the signals just aren't getting there.  I had 3 bullseye rashes back in 1992.  Had all this stuff back then, got better after taking antibiotics, only to have it all come back again after a surgery. I have never tested positive for lyme but have all the symptoms, the rash and I improve on antibiotics.