Really down and confused by the 'cycle' of my neuropathy (which is NEVER numbness), rather a burning sensation.
This burning affects my feet the worst and runs up to my knees - hands are less severe as are arms.
What I do NOT Understand??? I get relief from MOVEMENT - I CANNOT be still, sedentary - at least in a sitting position. While sitting, feels like my feet/calves are in a acid bath - I know others can relate to this feeling!
But WHY do I get INSTANT relief once I get up and walk? I also get INSTANT relief by applying cool water to affected areas. Also different than others, my feet/legs don't burn while lying in bed, yet my upper body is awful in bed.
NO doctors have an answer for this - they don't think I have mechanical/spinal pinch problems.
2 neurologists do NOT think I have MS.
My LLMD is very kind-hearted and attentive, but I sometimes wonder if I have the right dx? Was clinically dx'd with Lyme and Bart - Far more likely I would have Bart which I hear can cause neuropathy.
Have had NO Bart testing...My Igenex Lyme test was negative yet had a WHOPPING 12 bands as either IND/+, 7 of which where Lyme specific, but not enough +'s for a overall positive.
I hate to complain about all of this, just wondering why this is happening?
I am undergoing IV Rocephin (3rd week) + Flagyl. I really do NOT feel ANY better/worse other than a bad flu last weekend at which point neuropathy WAS worse.
I get a moderate relief from Gabapentin (Neurontin), but biggest relief continues to be movement/cool water/air.
Only connection to movement I've made is maybe I have vasculitis from Lyme/Bart and this is relieved when I resperate/breathe well?
Thanks for ANY help/experience/advice. Just wondering why my neuropathy presents so differently than everything I've read, be it Lyme, MS, etc.
Please Take Care Everybody Posts: 247 | From The Country | Registered: Oct 2007
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bettyg
Unregistered
posted
no knowledge, but up we go.
since not many are on, try SEARCH found at top center.
type in neuropathy an feet MEDICAL text....2nd search; show subject only any date
leave membership no. blank; click send
read all posts/replies;
if nothing found, use BACK key and show subject only; click SEND again. hopefully something will show up
nothing... type feet pain and do same as you did above ok! good luck!
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posted
Flagyl and Tindamax made my neuropathy worse. After I quit the abx the neuropathy lessened.
I also got relief from Lrica, I think it is the second generation from the Neurontin you are now taking.
As to why it's better when you move? From my own experience my numbness, buzzing and {{{vibrations}}} would be lessened when I had no pressure on my back nerves.
So it was real hard trying to sit back, sleep, & drive.
It's a neuro thing.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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posted
I also have horrible burning and tingling in my left leg and foot. And I also get relief from moving. My dh is always telling me to sit still and stay in one place - he doesn't get it that it hurts!
As far as cold giving relief, it is because nerves like heat and are much more active in warm temps. I once had nerve conduction studies done where they used a heated operating room blanket on my legs during the tests - my nerves went crazy! So, it makes sense to me that cold helps. I never really noticed that in myself, but I don't think it helps. For example, it doesn't lessen when I walk outside in the winter.
I have gotten relief during treatment, but am currently off abx and it is always the first symptom to come back - and in fact is what sent me on the long search for a dx so many years ago.
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
From everything I have read and was told neuropathy is more of a Lyme symptoms then a Bart one. There are literally hundreds of scientific papers on Lyme neuropathy, yet very few on bart. In general when you look up infectious causes for neuropathy Lyme is always mentioned, Bart almost never.
After 1.5 year of full-time Lyme/Bart abx I am ready to start exploring other options. I will be asking my LLMD to stop the abx and see what happens as I don't believe it is doing anything for my neuro pain - but it sure as hell is wrecking my stomach.
I also had the flu last week and am still recovering, it made my neuro pain so bad again that all of this is very depressing. if I knew this was permanent damage to the nerves I'd just move along and live with it - but it feels very much alive and evolving.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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posted
Has anybody gotten evaluated for EM - erythromelalgia? It's in the neuropathy family.
My symptoms:
After standing or walking for more than a few minutes, my knees get BRIGHT red, very painful and begin burning. At times, you can feel the heat through my clothing from several inches away. My knees swell up, and if I don't get off my feet, the swelling and burning goes down to my feet. At times, it looks like I have elephantiasis. I often run fevers, and they tend to get the burning started. I sometimes get burning in the joints of my hands, and my hip joints are extremely tender (not sure exactly what causes that - always assumed it was just arthritis.)
In addition to Lyme, I have been diagnosed with fibromyalgia. Since January of this year, I have had 10 angioedema episodes - only the first was life-threatening because my airway began to close. Also, during the first episode, in addition to the swelling of my face, it was also bright red and burning, and even after the swelling went down, my face peeled at least five times, with oozing, crusty scabs - real attractive. Now I wonder if the angioedema was accompanied by EM.
Please, someone tell me that I'm not the only one.
Will let you know if diagnosed with yet another weird condition.
Posts: 19 | From Georgia | Registered: Aug 2003
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Have you had any tests done that show damage to the nerves? Do you know whether it's the large or small nerves (or both)?
Sometimes movement and sensation can mask the discomfort from the neuropathy so maybe this is what is happening...
Neuropathy is the most dreaded symptom I have had to deal with so I can relate to how frustrating and upsetting this can be!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I had tingling and burning in both feet and hands before my treatment started. Now 2 months in, it is hardly there at all. LLMD says it is part of the Lyme and it is neurological.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
oh yeah, exactly what I had, even my eyelashes burned, bet you didn't get that!!! ,anyways, it is probably bart. I had straight burning for 5 months. no s%%%t, 5 months, and 11 ducks, emg to check nerves, 2 llmds (wanted money more than to treat me), and so, I was so` desperate, I went out of town to see one of the best llmds. He gave me levaquin right away, without any bart tests. now, it is 90% gone. I have been in treatment for 9 months. I am now back on levaquin, and will do flayl next week. I got the bart streak last week, finally, and my bart test I took last month was NEGative. So, get a good LLMD, no matter how far you must travel, get a good llmd, you will feel better and will heal!!
Posts: 455 | From Maryland | Registered: Jul 2007
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Haven't checked this forum in a while, ironic my thread was bumped as I am in the WORST episode of the neuropathy - it is awful
At the present it's affecting about 70% of my body - feet to mid-thigh, full arms and chest plus sections of back along spine.
My gabapentin is suddenly doing NOTHING to help it and I cannot sleep.
Movement still gives some relief, but pretty bad.
This started in earnest about 4 weeks into Lyme therapy - not so certain the IV Roc is doing it rather than the oral meds (Flagyl and Azithromycin) Really got bad immediately after starting zith!
What should I do? Is this possibly a herx? If not for the insomnia and nerve pain, I would be normal, not really sick.
My Lyme Dx was clinical, but bart suspsected yet NO bart treatment for at least a few more weeks, LLMD's orders.
Thanks for any feedback, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
My arms will burn at times but not pain...just like a bad sunburn.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Alv
Unregistered
posted
Ok my burning started only when I got BLO -as we are all trying to figure it out.
Most people have just it and looks like they have LYME but you can have it without LYME.
You need to do a FRY lab and see. Do yousee any patterns like blue/red purple very small lines in your legs.
....I bet you do...chekc them out very carefuly as you might be foled as veins..they are not.
My daughter has it.Mucsle testing , western Bloot and Biofeedbacl machine showed no lyme.
Ao you might look into it.Check your body careful for any red dots or any slight red lines that are very very fine.
While you are in Azithromax than add HH CAPSULES and you do not need your doctors percription or perm ission .You wiull be glad you started...Try to increae and see that is going to help.
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