This is topic UPDATED - Burning pain continues... in forum Medical Questions at LymeNet Flash.


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Posted by SarahL (Member # 11452) on :
 
The last post got too long for me to manage (ie read or remember what I had read a minute ago). Plus, the burning pain isn't ending or changing or lessening or going away.

These are the things I tried per doc/nurse/your suggestions:
Stopping abx for a week (no help at all)
Major detoxing regimine w/ lemon juice, detox tea, baths, etc. (no help at all)
Menthol gel (OMG, MASSIVE, HORRID PAIN - I WAS CRYING AND WASHING IT OFF AS FAST AS I COULD)
Aspricream (no help at all)
Changing abx (Zith - upsets my stomach and hasn't helped) for 4 days now

I go to see Dr. C on the 29th and I'm hoping he'll send me to a Neuro. My old neuro won't see me now that I'm a LD patient. Niiiiice. I can't get an appointment with a new Neuro w/out a referral for some god forsaken reason.

And for those of you who said this is Neuropathy, well, I've been told I had neuropathy for 7 years now, and it never, ever felt like this. It was tingling or numbness, but this is definitely NOT the annoying-but-dealable neuropathy I've always had. This is torture. Maybe what I had wasn't neuropathy, maybe there are different levels - I don't know.

It's mostly still in my arms from shoulder to fingers, but now I'm getting it on the backs of my legs, a twinge on my stomach, the back of my neck, etc.

I am literally at the end of my rope, and for Lyme patients, well, you guys know that's just rock bottom of rock bottom.

Is there a technical reason why Darvocet doesn't work on it? Anything I should tell Dr. C in particular? I mean, "I feel like I'm on fire and going mad from the neverending sensation/pain and nothing helps" sounds so irrational to me.

Thanks guys-
Sarah

[ 11. October 2007, 11:33 PM: Message edited by: SarahL ]
 

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Posted by Lymetoo (Member # 743) on :
 
"I feel like I'm on fire and going mad from the neverending sensation/pain and nothing helps" sounds so irrational to me."

That is VERY rational and the best thing to say! He needs to know exactly how horrible it is for you.

What do you feel that a neuro could do for you??

Did Dr C give you neurontin or Lyrica to try??

I think the only way "out" is "through" as some former board member used to say. In other words, continuing treatment is the only way out......I THINK and in MY OPINION....Darned if I know ANYTHING for SURE!


 

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Posted by SarahL (Member # 11452) on :
 
Dr. C's nurses aren't helping - I mean, I guess they're probably following protocol or whatever, but I'm getting NO HELP! First they said it was likely a herx, so I stopped meds and that didn't help. Then they said, okay, it's a new sx and try the next abx. I'm on that, it's making me sick as a dog and not helping my head pounding (which oddly enough I can live with feeling like my head will explode at any second) or this burning under my skin.

I'm to the point where I'm saying, "please just cut my arms off" to my husband, and scratching and slapping my arms just for a second's worth of *different* sensation. I feel like a nutcase, moreso than ever before with this disease, and that's saying something.

I'm wondering if I should be checked for MS, since no one's ever done that. Also, since Dr. C hasn't offered neurotin or *anything else,* I wonder if I"m better off going to a local neuro. Hell, I don't know. At this point, screaming or crying are my two best options. Or a double arm amputation.

I just want it to stop!!!!

Thanks, hon.
 

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Posted by lymeHerx001 (Member # 6215) on :
 
I would feel like someone cut open my feet and then put salt in the wounds and then put on tight socks and said GET TO WORK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
 

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Posted by Lymetoo (Member # 743) on :
 
Sarah....FAX him everything you need to say....tomorrow.

I think you'll get a better response.
 

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Posted by Julie4848 (Member # 13065) on :
 
Hi:

Lyrica has helped me a lot with the burning, I take two a day 25mg so far so good....At first it makes you very dizzy (3 days) then your body gets used to it...I LOVE IT...

Julie
 

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Posted by BartonFink (Member # 10818) on :
 
Hi Sarah

What you wrote sounds sooooo familiar to me. I have suffered from this symptom for a year now (though it has been somewhat better every now and then but I still have it every day). I have it on the same locations as well: arms, backs of my legs, neck etc. Whats different with your case is that menthol gel does give me a short relief.

I have also wondered if this really is *real* neuropathy or what. Tingling or numbness is walk in the park compared to this torture. I have often thought like "please somebody cut my arms (or legs ) off."

That Lyrica might be worth a shot, I think it gave me some relief. But it made me feel drunk and dizzy too. I also tried Tramadol and that seemed to help (I cant take it now because of drug interactions). I think Klonopin might be helping too.

It is so unbelievable that the docs are so clueless with this kind of pain. My doc said that it is caused by neurotoxins... well, isnt there anything that could remove those neurotoxins then? *sigh*

Btw, is your pain worse in the evening? Or after eating? That's the case with me.

Anyway, I hope you find some help because this symptom is just too much. Before I had it my life was somehow livable, now its not.

BF
 

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Posted by jennyflyer (Member # 12792) on :
 
Hi Sarah. A few months ago, before we determined it was Lyme, my PD sent me to a neurologist, convinced I had MS. At the time I had been experiencing the tingling and burning for a few months.

So, went to the neuro, very nice man, very supportive. He did a EMG and determined there was no neuropathy.

He did agree that perhaps it was Lyme and I should try to find a specialist. Which shocked me.

But if it would put your mind at ease, then you should see a neuro.
 

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Posted by BartonFink (Member # 10818) on :
 

quote:

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Originally posted by Julie4848:
Hi:

Lyrica has helped me a lot with the burning, I take two a day 25mg so far so good....At first it makes you very dizzy (3 days) then your body gets used to it...I LOVE IT...

Julie

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quote:

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Btw, is your pain worse in the evening? Or after eating? That's the case with me.

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This sounds like it *could* be blood sugar related. My father and brother both had great relief from their neuropathy after they got their blood sugars under control. Have either of you been tested for diabetes? Hypoglycemia? Even if those tests come out OK, a trial of low carb diet, no sugar etc., might produce some relief. No guarantee's but worth a try.

Terry
 

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Posted by Skyler (Member # 11549) on :
 
Hi Sarah,

I am dealing with the exact same thing. Its so bad I can't stand it.

My doctor thought it was from 'serum sickness' and took me off meds for one month. I am still in pain and about to go back on meds.

Hang in there. Try relaxing or watching a funny movie. I have no other recomendations for I have not found any relief myself.

I hope you start feeling better babe!
 

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Posted by Julie4848 (Member # 13065) on :
 
Hi:

They Lyrica started to work within two days. The numbness and tingling went away within 24 hours and the burning the next day. I do have very mild buring, but not bad like before. I also take a low dose 25mg twice a day. I take it with food...

Try it,it just might help you
Julie
 

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Posted by SarahL (Member # 11452) on :
 
So I've just taken my first Lyrica, but it's a lot more than the others on here take, 100mg twice daily. I'm about an hour into my first dose and the only things I feel are extremely weird blurry/halo-y/cloudy vision and zinging pain down my fingers. It seems intensified somehow lol.

Anyway, they said it could take up to a week to work, and I'm just incredibly grateful to have some hope of someday not feeling this anymore. I was cataloging my old sx and new sx today and if it wasn't for this one massive thought-consuming sensation, I'd be doing pretty darned good.

I have a little more energy, hardly any pain in my hips and knees now (which I never dreamed I'd be able to say), almost no chest pain (just under collar bone it used to feel like steel rods were driven through me), very few headaches that aren't sinus-related, very few days I can't type b/c of swollen fingers, only about 3 or 4 days a month with Bell's Palsy now, sleeping *much* better, etc. etc. etc.

Maybe someone should start a GOOD NEWS, TX HAS HELPED ME THIS MUCH SO FAR thread!

Anyway, a little hope goes a long way with this disease, and I've just taken a 100mg dose of it! Now I'm off to watch Dirty Jobs (Mike Rowe's comedy is heaven-sent, I'm convinced) and sleep!

Thanks for the advice everyone - here's to Lyrica and all its possibilities! (*crosses fingers*)
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by TerryK:
Have either of you been tested for diabetes? Hypoglycemia? Even if those tests come out OK, a trial of low carb diet, no sugar etc., might produce some relief. No guarantee's but worth a try.

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