Hi - I've had what I consider peripheral neuropathy for a year and a half now. I read some recent posts that some people feel resolution of symptoms during exercise. Some people seem to have the pain all the time, and especially bad at night.
I'm the exact opposite. If I don't use my arms at all, I have no nerve pain. The moment I pick anything up, grab something or even change the channel on the remote, I get immediate burning in my arms and wrists.
It's like the nerves are always inflamed, but then if I move them, they flare up.
Does anyone else experience this? Thanks
Posted by MBB3 (Member # 13459) on :
Hi Carol:
What is your diagnosis and treatment?
Yes, I have awful nerve pain (burning), my worst sx! It has gotten far WORSE since I've began Lyme treatment. In particular oral Tindamax and even moreso Azithromycin has made it worse!
Yes, I DO get relief 'while' moving. However, 'after' moving, I can be in worse burning pain (soles/calves). Same goes for hands/arms, they CANNOT be stationary against anything warm, they will become excrutiating, but if they are in constant motion doing light work, almost painless.
Anyone else? MBB3
Posted by Stoli (Member # 11175) on :
CDC positive from LabCorp (CDC negative from Igenex). Presumptive Bartonella.
Did 6 months 500 mg 2X day ceftin/tindamax. Followed by doxy and 3 months 500 mg. Levaquin. Currently on 8th week of IV Rocephin.
Symptoms started as "pins and needles" but turned to burning after starting treatment.
Posted by MBB3 (Member # 13459) on :
Hi Carol:
We DO have some parallels! I have a Lyme/Bart dx. Both of mine are clinical, but pretty likely I have one or both...risk factors/equivocal Igenex test with MANY bands, but just not the right combo for positive!
How long do believe you've been infected with Lyme and/or Bart? When did your nerve sensations begin as 'pins and needles'? Before dx I presume?
I am starting 7th week of IV Rocephin tomorrow. My nerve pain is ALSO a burning-type, not fun Mine's been bad since Fall 2006 (when I first sought help/dx, which didn't come until 2 months ago.
In recent weeks, it's been affecting from soles to above knees, chest, back, hands. Seems causal to the oral abx's.
Interesting to see you take a similar tindamax dose. Have you used Azithromycin? This is the one that made the burning worse.
Take care and better health soon, MBB3
Posted by Stoli (Member # 11175) on :
I really have no idea how long ago I was infected. I do know my symptoms emerged 2 months after a miscarriage. Pins and needles began Dec. 06, began treatment by the end of the year. So no real delay between symptoms and diagnosis and beginning treatment. Although it did take me 6 months to get to a LLMD after the initial 30 days of doxy.
I've never tried Zith. I switched to IV as I was having so many GI related issues, but unfortunately the IV hasn't really helped with those issues. My IV ends this week.
I'm so disappointed that I don't feel it helped. It is making me utterly exhausted.
Good luck to you!
Posted by Stoli (Member # 11175) on :
No one else?
Posted by Carol in PA (Member # 5338) on :
Dr. Teitelbaum has many helpful suggestions. Carol
Posted by davidx (Member # 8326) on :
Hi Carol-
I have small fiber neuropathy. Clothing can feel very uncomfortable and painful (different places on my body).
Have you had an EMG (large nerve fibers) done or a skin biopsy done (small nerve fibers) to look for any abnormalities?
-David
Posted by sutherngrl (Member # 16270) on :
I have burning and stabbing pains, but I also have some constant pains. They stabbing pains are the ones that migrate. I have noticed this getting worse. I have been taking zithromax. Is this known to make the pain worse?
Posted by DolphinLady (Member # 6275) on :
Near infrared light heals nerves. There are many machines out there. I got very lucky and found a used professional unit (Bales Scientific Photonic Stimulator, no longer avail - company was sold etc). With it I've resolved all neuropathies.
Posted by dg0207 (Member # 15623) on :
I also get these burning/stabbing and sometimes "bee sting" like pains from time to time.
They were one of my first symptoms prior to all of the muscle and joint pain. At first I thought it was a virus like shingles before to my lyme diagnosis.
I currently have had them for the past few days and take neurontin when I need relief although I hate to take it like any drug.
I am considering doing a fast/elimination diet to see if I am loaded with too many toxins and/or my GI system may have become sensitive from all of the oral abx's and supplements.
I know I get candida issues from time to time. Not sure if it related.
Anyone w/ add'l info please continue commenting on this post.
![[Frown]](frown.gif)
Mine's been bad since Fall 2006 (when I first sought help/dx, which didn't come until 2 months ago.