posted
Is there anyone that has these sensations all day and all night with no reprieve? What does it mean? All my doctor says it is neu ropathy but it is persistent and sometimes the burning is so bad it feels like acid is dissolving my muscles. Also I sometimes get a burst of severe burning which can last up to an hour before getting better and along with it a heart arrythmia. The doctor seems puzzled and merely says it sounds neurological but this doesn't make it easier. I appreciate your input.
Posts: 425 | From NY, United States | Registered: Mar 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I get this and I have been for years.
The biaxin herx made it worse. Going off anti-biotics now makes it worse.
Sugar makes it worse,, lack of sleep,, depression. Excersise. The list goes on and on.
For me it feels like there are bugs churning away in my feet and legs,, they tingle and burn and hurt.
Sometimes it feels like the skin on the bottom of my feet was cut off and then left hanging. Its SEVERE SEVERE pain.
Muscle relaxers helped a little bit. But now I have a tolerence to the skelaxin and the flexeril.
He wont give me anything stronger for fear of addiction.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
What has your doctor prescribed for this? I take 2100mg Neurontin per day plus 25mg amitriptyline. If you go to www.angelfire.com/ct/lymejourney, the first few pages of this website -- which is my story -- tell about my neuropathic pain. Actually this pain (and sensations) is what broke the camel's back. This is why I had to stop working, finally. I didn't have access to the internet at the time and wasn't even certain what I had, so you're already ahead. But this is extremely hard to deal with and the meds don't entirely eradicate it, however, the Neurontin saved my life and sanity such as it is.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Yes, I have this too. It's what sent me to 4 neurologists, none of which diagnosed my lyme disease.
I am hoping that with treatment, it will subside. Anyone know if that is true?
Mine is bad at times, especially the burning nerve pain under my scalp, but I don't take medication for it. I can live with it. But, I do hope it will go away.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Oh my,
This sounds so severe. I'm so sorry you're having such and awful time with it.
I've had only minor forms of your problems. The rx s have helped tremendously. I do go up and down but have been getting better.
Today I have headaches, arms burning and scalp sensations that are uncomfortable.
Feel better soon AKM,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Yep, I definately have the bug biting , stinging feeling. I have been off abx for a coupe of weeks and it is increasing. Never stopped completely evenin ABX. It makes me miserable/desponent when it lasts for long periods.
I hope it goes away for all of us eventually,
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Like Heather, I've also had minor forms of what you're describing.
Just tonight, I felt certain something was crawling up my legs. Kept looking, brushing. The sensation persisted. Nothing there; nothing ever is.
I hope you're able to find some relief!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I used to have them and presently I don't.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Laurie:
I beleive your Doc is correct about it being neurological (nerve) pain. That's why Neurontin works - it's given to people who have nerve pain from shingles. Although I don't think the mechanism is known on HOW it releives pain.
IMO, The crawley, biting- burning weird sensations are a mild form of the terrible bone crushing pain that's debilitating The pain you're talking about is off the chart.
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