posted
Can you please describe your neuropathy. I feel like mine is so unlike anyone else's because when I describe it to the doctors they look at me like I am crazy.
It feels like my nerves are firing every second of the day on my scalp,in my neck and in my spine. There is always activity. Sometimes it burns and is tolerable- other times it feel deep within tissue and feel like needles being pushed in. Other times it feels like lightning bolts.
I have tried Neurontin-no good for me-too many side effects. Elavil at small doses doesn't work and also tried chiropractic-thought I would die the next day from the pain.
I am also taking methyB-12 shots but haven't noticed a difference.
I just started physical therapy for the fifth time and doubt this will help-therapiost said she would try but she really doesn't understand this.
I also just bought an infrared heat lamp-250 watts- almost set my hair on fire when putting it on my neck.
Please let me know if these symptoms are familiar to you. This is a horrible symptom to deal with. Thanks.
Posts: 425 | From NY, United States | Registered: Mar 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
My neuropathy symptoms are ususally burning, stinging, and tingling sensations that usually increasing while I am sleeping.
If I am having a really bad case I will take a xanax for it to settle down, otherwise I just keep pounding at this disease hoping that it will decrease.
Posts: 1603 | From ny | Registered: Aug 2006
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daise
Unregistered
posted
Yes, neuropathy and neuro symptoms. I had this rather badly when I got Bell's palsy. Now, compared to others here, mine is minor. No tingling. Numbness at ball of foot. Muscle pain/numbness. And other annoying neuro stuff.
My right arm doesn't swing naturally, although I've been "practicing" using it, trying to retrain my brain. I walk across the bottom of a warm pool, sort of run in slow motion, pushing off with the balls of my feet and swinging the opposite arm.
I'm getting perky neuro activity--the arm is swinging a bit now, from the walk/running, and I assume B12 shots plus antibiotics.
Plus I do dance/stretching in the warm water. Before pool sessions I do machine weightlifting--overall, that's really helped--wow!
Have you had Lyme treatment? Are you herxing and so it's worse?
I had severe burning herx's that felt like they were coming from the center of my upper arm--on 300 mg, once per day, of doxy.
posted
You may already know this, or it may not help, but Omega 3 supplements have done wonders for nerve problems for myself and others I've suggested it to.
It was not for lyme, but it may work for neuropathies as well. At the time, it was used for SSRI withdrawal. If you're familiar with this and a phenomenon called the "zaps", I can tell you the Omega 3 wiped this out in just a couple days.
It's incredible for repairing nerves and maintaining proper nerve function. You have to take pretty high dosages and get the right supplement for it to make a noticable difference, but I've seen evidence firsthand. I'm not a doctor, so please do your own research, but it might help.
posted
I don't know what cranial neuropathy is but if the nerves burn and fire constantly in your scalp that may be it.
I am taking B-12 injections but haven't noticed a difference and will look into Omega 3 oils for help.
Any other ideas would be appreciated. Right now I am on no treatment so it is not a herx.
Posts: 425 | From NY, United States | Registered: Mar 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi,
I'm on Lyrica (Pregabalin), which is second generation Neurontin for nerve pain, as well as seizure-like events. It's made quite a difference in my life; Neurontin never did much.
Perhaps ask your doctor about trying Lyrica?
If you use the search function on these boards for Lyrica, you'll see quite a bit of discussion.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
My neuropathy is hellish, it has totally destroyed me. Burning, stinging, itching, eletric feeling in the whole body.. you name it. And nothing has helped so far.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
Pins and needles, numbness, tingling, burning sensation like my foot or hand was dipped in hot wax, feeling like the limb has a rubber band around it, all the blood flow cut off, falling asleep, chills, and more. All kinds of fun :-)
Topomax and Elavil together were the best for me but nothing could stop it completely when it was really bad. I had symptoms for over 5 years and it was driving me insane. Lyme and Babs treatment really helped.
I have had many days with normal feet and hands and now only have fairly minor symptoms sporadically rather than constantly.
It does get better.
I also would get wet willy sensations in my ears, ewww.
This disease is so strange.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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