posted
Last August, I was diagnosed with small fiber and large fiber neuropathy. I was just retested and it's not only gotten a lot worse, autonomic nervous system neuropathy is suspected because they found that I have almost no motility in my digestive system (I lost almost 100 lbs in a few months - no reason found - but they did find the motility issue). I thought that once the nerves die, that's it. The level of neuropathy you have when it stops is what you will live with.
I am scared to death because I am losing functioning in my left leg and arm and in my hands, my mouth, the muscles that you use to laugh and cough (I can barely do either). I have the same pain that you've mentioned here, the stabbing the burning. And the numbness. But another thing that scares me is the problem with bones that you mentioned. I've already had C7 replaced but in the last 3-4 months, my toes have started to move under my feet - they've moved 1/2 inch (left foot), 3/8 inch (right foot). I can't turn my head without hearing lots of loud cracks. My lower back, my neck, degenerative disk disease. And I just found my LLMD. Only one appointment so far and he gave me a LOW dose of Doxy to take for one month at which time he will test me (he uses Igenex). But I'm scared - I want to start this aggressively. I understand what he is doing and maybe it's because of the limitations of insurance...but geez...anyway...
Thanks for all this good information. I've taken notes.
Posts: 18 | From MI | Registered: Mar 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Sometimes I feel so alienated in my suffering, then I read a thread like this one. :-(
So sorry.
My neuropathy had almost gone away, then I started having adverse reactions to every antibiotic out there, and it includes burning feet.
When I quit the antibiotics, burning goes away, but lyme symptoms with no limitations come charging back in.
What's a girl to do?
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
Cymbalta worked great for me until the allergic reaction showed up (I was fine for the first five months, then bam!). But I would definitely recommend it to help with both pain and depression. I think that muscle relaxants help sometimes. I take large amounts of Neurontin and that helps with the adrenaline pain (when I get startled, it's the prickly pain that attacks my body for several minutes afterward...and I startle easily!). I also recommend finding a pain management doc - someone who believes in treating chronic pain properly. They are as hard to find as LLMDs, I think, but they're out there. Unfortunately, most of the pain clinics push cortisone injections, which is a huge no-no.
Posts: 18 | From MI | Registered: Mar 2007
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posted
I have had Lyme for 20+ years. Went untreated for years, then when I was 21, treated just with 30 days of antibiotics.
After birth of my third child (c-sec) my symptoms came back with a vengence and now are worse and can not find a doctor.
I also have had a spinal fusion of T9-L5, about 18 inches of my spine. I continually have the burning pain. It is so unbelievably bad, that I now have had to hire someone to come and help me clean my house and take care of my kids a few days of the week (and we don't make all that much money).
I used to be supermom, now I'm a super DUD! I feel absolutely useless. And the burning pain in so horrible. Since I already had an injury (meaning the surgery) Lyme attacks the weakest parts of your body and since you had surgery before too, my guess is that it's attacking it also and causing you a whole bunch of pain.
I hope to hear more from you to see how the meds are working. Nothing has worked for me (neither diet or meds), but I haven't been on antibiotics to see if they would work.
Posts: 94 | From Greenville, Tx | Registered: Apr 2007
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You described something called "adrenaline pain"...when you get startled the prickly sensation lasts for a few minutes? Is that everwhere on your body and does it matter whether or not clothing is covering that part of your body?
Thanks!
David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
Hey Kayru, You sound exactly like me. Five yrs and the burning all over my body remains.
I cannot connect any dots of food, meds only activiity. If I am not herxing, what causes burning is standing on my feet, wearing clothes or anyhting touching my skin.
I do know cold increases the burning.
I was tested and Babs was pos/Bart neg, which means nothing.
Warm baths with epson salts ease the pain.
I also use a foot detoxer which sometimes eases the pain for a few minutes.
I have not worn real shoes sor 5 yrs.
I am thinking about tying Lyrica.
I take 20mg of Elavil at night for pain and sleep. It is not affective for depression at this low dose.
This is the MOST frustating, painful expereince for all of us.
Pain robs your soul and causes us to life thru dark glasses.
I still believe we will get beat Bb and all of it's friends.
Have any of you tried homeopathic, rife, Herbs, Rife?
I know this sounds silly, but I do get confused at what is exactly causing the burning.
Is it toxins, results of the Bb, or what?
If we knew what actually is causing the nerve pain, we may be able to figure out how to stop it.
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Things to try:
try to get a book called "nutrients for neuropathy"
google "nutrients diabetic neuropathy"
google "nutrients repair myelin sheath"
these will include many forms of b's, etc, and abundance of omegas.
Myco Medicinals has a nerve regeneration formula, Mental Clarity.
None of these are quick fixes, let alone guaranteed fixes.
But we must try.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I stand behind this post. Sugar and carbs are evil for me. THat is untill I have some better answers. Here I am a year later and all the same symptoms. I have not improved at all this year. Its just more of the same.
quote:Originally posted by lymeHerx001: After years of treatment my feet still burn after I eat.
I dont know exactlly what it is.
Today I had some chicken fingers almonds and broccoli for lunch with a cappacino,
no sugar.
40 minutes later the burning pains started along with weakness and tiredness.
Why still this burning and weakness after eating?
Posts: 2905 | From New England | Registered: Sep 2004
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posted
wow, i am amazied at all the repsonses here. thank you so much everyone for all the input. we need to keep this thread, or another like it going now and then for updates. they are slow researching lyme, but some of us may benefit from the advances being made studying diabetic nueropathy.
i just went from 30mg of cymbalta to 60mg. i am using it for depression and hopefully nerve pain. i will let you all know. i had problems with rapid weight gain on lyrica and swelling in my wrists and ankels, more than usual. so strange how different combos work for some, but i have not given up on lyrica and would put up with a 10 lb weight gain to get rid of some of this horrific nerve pain, but hoping the cymbalta will help. i also take wellbutrin. depression is one of my worst symptoms along with the nerve problems
when i can afford it i am also going to hav some spinal injuections, i went to a new pain clinic and they are not lyme knowledgeable but very pain knowledgeable. we will inject one side which will effect the nerves in my lower legs and feet. ife we get a good response, we will do the other side. this will be a couple months down the road if the meds aren't helping much,
i so appreciate all the repsonses and sharing of this terrible symptom. some of you wound so miserable and i feel for you and hope together we can at least keep the topic going and help each other with all ideas from diet to meds and anything inbetween.
coming here makes me feel sad, i feel like i am not alone, and that helps, yet i hate for so many to be suffering this same thing with so little relief.
i never dreamed so many would keep posting, thanks to each and everyone of you for your help and advice.
anyone else feel they can tolerate pain just about everywhere else better than lower legs and feet? i mean when the soles of your feet are so sore you want to cry just to step on them, there is no way aorund it. for me, once it is triggered, nothing seems to help but getting off of them but it is no cure. my hands hurt a lot too, but they don't have to carry me around. i don't even remember the last time i wore attractive shoes...it's all about comfort.
anyone weraing crocs? i heard they were awesome. i know someone with terrible nueropathy from aids. he wears nothing but crocs, even in the winter. he swears by them. they have a website. crocs.com. every little thing helps and since this thread is so long there sure is a need for all we can do for each other whether it is a comfortable pair of shoes or the next promising treatment.
you are in my thoughts and i know if you live with this pain you are fighters, and sometimes feel alone. feel free to email me anytime.
peace, kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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posted
This is a great thread. I'm learning so much. I suspect lyme with resultant neuropathy, but am waiting to see a LLMD next week. I am praying for a diagnosis so that I can finally start treating whatever the hell is wrong with me.
David, I think I know the feeling that you're talking about. I call it my "invisible ski mask." Sometimes, it covers my entire body, but usually just my face or feet. It isn't exactly painful, but it is nonetheless awful and maddening. I feel like someone is poking me with tiny needles in all my pores, and then the feeling subsdies and is replaced with intolerable itchiness. I spend the rest of the night rubbing a scratchy blanket on my face and howling like some kind of a nut.
I guess this leads me to another question, can extreme itchiness be a sign of neuropathy? For me, it travels all over my body, usually following stabbing pains in my wrists, feet, and toes. Frequently, I have trouble walking due to the burning sensation in the balls of my feet.
I have only dealt with this for only 3 months and I already feel like I'm at the end of my rope. I even begin to fathom how people have suffered through this for years or even decades.
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
i experience the pin pricking sensations all over my body at different times. i try to explain that symptom this way...it feels as if i am standing in a rose bush. if you have ever been pricked by a rose thorn, it hurts and also gives you chills, at least that is how it feels to me. there is no pattern i can figure out for this, but the burning pain in my limbs is definitely made worse when standing and being active.
the type of pain we are all talking of on this thread is so bizarre and hard to explain to doctors. i use words like it feels as if there is a blow torch in my lower legs and the soles of my feet feel like i am forced to stand on burning hot pavement or sand barefoot. it is just like torture at times. my feet will actually turn bright red, so do my hands. sometimes at night i have to stick them out of the covers.
do any of you get a combo of this type of burning pain but also a heavy aching feeling and weakness in your ankles? it is like so many different feelings going on at once, but the relentless burning on the soles has to be the worst.
i just went to 60mg of cymbalta. it is just my 2nd week. i have not noticed the change i was hoping for but it is still too early. my new psychiatrist was just at a convention where they discussed the doses of cymbalta actually being safe to go as high as 120 and even 240 for bad nueropathy. of course this is done slow over time and only in severe cases, but i liked that he was up on the use of it for both depression and pain.
some have complained of weight gain, but i have lost weight on it. i would say my only side effect so far is loss of appetite and slight nausea at times but not enough to stop taking it. i am willing to give it time and slowly increase if necessary. i have read some horrible threads on depression sites about this drug but i believe the people who do well on it are not the ones who come back and post.
thanks again to everyone for their comments and suggestions on this thread. i have learned a lot.
peace,
kathy
Posts: 97 | From Simpsonville KY USA | Registered: Jul 2002
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Regarding worsening symptoms after eating: I think I recall someone saying this could be due to neurotoxins in the bile getting re-circulated. Maybe try cholestyramine...
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