posted
Off and on throughout my illness, my skin hurts to the touch, a blanket, the shower, and touch to my skin hurts. If anyone has had this symptom please let me know? I have babs and Lyme. Positive readings.
Posts: 200 | From Massachusetts | Registered: Apr 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry you have to deal with this. My brother has this very badly. It is neuropathy for him.
Neuropathy seems fairly common with chronic lyme disease. I used to have other symptoms of neuropathy but that particular symptom was not a problem for me.
My neuropathy was almost gone after the first year of treatment. Hopefully yours will go away too.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
yes, i have this very bad. i cannot have another give me any sort of back rub or "pat'. i have the same as you, and am doing unwell ritht now.
i wish i had better info but the person abouve mentioned that it had to do with nerves and i know that every afternoon i lay down and my nerves are shooting off like fireworks which causes a seizure. hopefully you can find something to help with the nerves. i know for me that less stress and some music can help, but mostly i just lay in pain and cry. stupid i know, but thats all i have. i make sure that my kids cant see my weakness so they dont become so aftraid. i am on mepron for the first time in 3 years to try to help but i feel worse. maybe someone can offer some better advice i just wanted you to know that you are not alone. take care,
-------------------- well i know a disease that these doctors can't treat, you contract on the day you accept all you see... Posts: 97 | From nor cal | Registered: Oct 2006
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posted
Mrs. Scampi, A friend of mine has the same symptoms you mentioned and was given the dx of parvo on top of lyme. Hang in there,
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey MrsS...
You are not alone. There were years where the ONLY thing on me that didn't hurt to even LOOK AT were the bottoms of my feet. I couldn't even sit down without the chair hurting me. VERY painful.
I constantly backed away from anyone who looked like they might reach out and touch me for any reason.
If I bumped into something it was like AHHHHHHHHHH!!!!!!
The pain was all over. A sheet touching me.. a shirt .. socks and FORGET shoes... a barrette in my hair... pocket stitching on my pants... anything that touched me brought me to tears.
Even trying to sleep on a sheet that had a slight wrinkle in it made me have to get up in pain to adjust it. It was BAD!!!
I am still having problems with it. I rarely wear clothes that fit because if they weigh on me it hurts. Forget a sweater or coat! Within a few minutes I am in pain from the weight of them touching me.
And when was it the worst? Actually it was REALLY the worst when I was herxing from Rocephin. So I have to assume... and remember back in the old days we didn't know what a herx was.. we just thought we were going to die....
But I will assume it is the Lyme causing it? But I had undiagnosed babs too.. so I can't say.
The good news is.. it IS better. Not wonderful.. I went too long I think... but it is better.
Now my big problem is finding a job that doesn't make me wear clothes.
And if I did.... I gotta find out how much I'd have to pay them to let me run around naked!
So far I can't afford to work anywhere. Maybe I could try the blind school where I worked years ago?
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry both of you!
If you haven't already, please get checked for diabetes. It is notorious for causing the horrible level of neuropathy that you both describe.
I can't be sure but I think mine was caused by bartonella and possibly lyme. Inflammation can also cause a lot of overall body pain.
TC wrote: Even trying to sleep on a sheet that had a slight wrinkle in it made me have to get up in pain to adjust it. It was BAD!!!
I can relate. My sister and I used to joke about our condition making us like the princess and the pea. Stacks of mattresses and featherbeds and still a tiny pea at the bottom of the stack feels like a big hard rock. LOL
Edited to add: If you aren't already, you should consider taking B12 and the active form of folic acid. This could be very helpful. I don't know how much it would help but it does help some people with neuropathy.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Before my daughter was diagnosed w/ Lyme, she was diagnosed w/ RSD (Reflex Sympathetic Dystrophy)...the pain you are describing sounds VERY similar to my daughter's RSD pain. Based on our experience, I believe that RSD can be a manifestation of Lyme disease.
Posts: 371 | From CT | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey T...
You said... "If you aren't already, you should consider taking B12 and the active form of folic acid. This could be very helpful. I don't know how much it would help but it does help some people with neuropathy."
Thank you for the suggestions... and for your experiences.
And yes do I know that Princess and the Pea story all too well! JUST like that!
I am .. no I was trying the B-12 injections... but can't get it now.. $$.. so it is causing me to be worse with this stuff. I do believe it was helping.
Now can you tell me what the active form of folic acid is? Does it go in your ear... do you drink it.. shampoo with it... or what?
OBVIOULY I have no clue.. but am willing to learn.
Thanks!
Hey JK... Sorry your daughter had this pain. It is horrible.
And I believe you are right about it being part of the Lyme. Heaven knows I never had that till I got Lyme.. and I don't know others who did either.
posted
Thank you all for responding to my question, i honestly thought that I was losing it and that it was all in my head. I'm so sorry to hear that you guys have this wierd pain to but happy at the same time to know that I am not alone. Much love to you all. Never give up Always stay strong... Yours truly, Mrs Scampi's daughter Kay
Posts: 200 | From Massachusetts | Registered: Apr 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Yes I do have this periodically. It feels like my skin is sore. Very odd feeling. I use to think it might be viral, don't ask me why. That was before I found out I had LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
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