posted
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 ]
Posts: 91 | From East TN | Registered: Mar 2007
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posted
"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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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.
Posts: 91 | From East TN | Registered: Mar 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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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
-------------------- Julie Posts: 61 | From Lake Villa IL | Registered: Aug 2007
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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
-------------------- 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
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.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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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
Hi Julie, just a question about Lyrica. Did it help with the pain right away or did it take time to feel the effect? I'm just considering if I should try it again. Thanks
-------------------- 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
After receiving an epidural steroid injection about 4 years ago, I began to wake up (3-4AM) with pain like burning pokers stabbed into the lower back and one or both knees. The pain would lessen somewhat as the day wore on but the next morning would restart the cycle.
Long story short, I narrowed the source to dairy products. Now I have to check labels obsessively. Any consumption of dairy causes the pain to return.
Everyone is different, but dairy was the source of my burning pain.
Posts: 175 | From Colorado | Registered: Feb 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
quote:Btw, is your pain worse in the evening? Or after eating? That's the case with me.
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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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
-------------------- Julie Posts: 61 | From Lake Villa IL | Registered: Aug 2007
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posted
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*)
Posts: 91 | From East TN | Registered: Mar 2007
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quote: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.
Definitely worth a try, Sarah! let us know how you're doing tomorrow!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Sarah,
I'm on 300mg / day now. I've got more symptoms being addressed with the Lyrica than the burning, but just to say that you're not alone at that dose.
I had EXCRUCIATING burning pain. It was familiar to hear you say, "just take off my arms!". I went to my ex-GP (who believed that my problems are psychosomatic), and told him,
"The burning / searing pain is so bad, it's like, 'Take off my skin and take out my eyes, I can't stand it.'"
This 24/7 burning pain subsided considerably with IM abx. Flagyl also gave me some immediate relief before I was on IM. We're all different.
The Lyrica is giving me some control of my life, in the sense that I have the opportunity to manage my symptoms through pacing myself, which is something I couldn't do before the Lyrica.
Neurontin never did much. I'm so pleased you're trying Lyrica. Living with this kind of pain isn't something any human being should have to experience for any prolonged time. You see my careful wording? I wouldn't wish this on my worst enemy.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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So sorry. So sorry. I had this pain for 3 months from my neck to my toes. A full-body, 24/7, hyper- rugburn or sunburn feeling. Torture is not too strong a word. I believe in another post I called it 'agony'. It's the pain that caused me to write all my good-bye letters. I didn't feel I could go on that way.
For two weeks during the worst, I could not bathe,shower, put on clothes, a sheet, anything. No pain reliever of any sort made the smallest dent in this pain.
That was pre-diagnosis for me. It improved a little on its own after about three months. When I took 400 mgs doxy, it did mostly resolve. Today (9 months since starting doxy) I still have one burning patch above my right knee - and every now and then, other little spots.
How long have you been taking abx, are you taking enough, should you try another type, I'm so sorry I'm not up to speed on your history.
But my firm impression is that palliative measures didn't/won't help; the root cause - which I 100% believe is the disease itself and probably not other ancillary issues - has got to be treated strongly enough.
Hope that doesn't sound too 'duh' - I know what I'm trying to say, hope it came out reasonably.
I do 100% know what you are going through. I wanted to kill myself, and I'm not kidding. Hang in there, try some other abx or more of the same if you can, my thoughts are with you.
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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