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Old 05-27-2004, 05:01 PM   #1
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struble HB User
Wondering

I have pain in my skin, that travels around my body in large patches. It's usually in the areas from the waist down, and sometimes on the back of my arms. It is painful without touching it, but if these patches are touched, it's aggrevated more. The patches can come and go without warning, and can move around. Additionally, I have several extremely painful points also, such as my lower back, shins the arch of my foot & heels. I can tolerate broad pressure (like a flat hand), but if I'm pressed with a fingertip or even a piece of clothing, it's excrutiating. Quite often I have difficulty walking because the pain on the backs of my heels is too severe. My doctor originally referred me to a neurologist and he did all these blood tests and they all came out normal, then they did an MRI and he found 2 cysts in my brain one was rather large at 4cm. He said my symptoms had nothing to do with the cysts and he had ruled everything out in his area of medicine and he just has no idea what it was. could this be fm????

 
Old 05-28-2004, 06:54 AM   #2
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Re: Wondering

Your condition does sound very mysterious and must have doctor baffled. Since neurologist does not have a clue I have no idea what type of doctor you would go to for evaluation of this condition. I guess you would have to go back to your primary care physician and hope that he/she had some idea of where to refer you to for additional input. I cannot imagine the anxiety you must be going through from MRI scan results. What is neurologist's idea on how to handle this? Good luck with everything. Keep us posted. (TT)

 
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Old 05-28-2004, 07:23 AM   #3
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Re: Wondering

WOW.. this is the first time I've heard anyone else describe the same pain in the skin that I have!!

I've had this off and on for the past 3 or so years - since I first got "sick" - docs still don't know for sure what's wrong with me yet.. possible Fibro, MS, Lupus, or even Lyme disease.. a fun waiting game lol

For me, it's almost like a sunburn type of pain, except there is NO redness or irritation where it hurts.. it's just painful to even have my clothes touching it. God forbid someone else touches it, it'll send me to the ground. Mine is mostly on my upper back and the top of my forehead.

I wonder if there's a name for this?? My docs think I'm insane when I mention it!

Keep close tabs on those cysts ok? I'll be praying for you

 
Old 05-28-2004, 07:46 AM   #4
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Re: Wondering

And another WOW...I too experience this pain. Quite frustrating if you need to leave the house and you just want to be naked. I have found that elevating my legs for a few days helps with the pain in my feet. I have FM but I was diagnosed with lupus at 17 and used to think it was from the "lupus rash". However over time I've learned that the lupus rash and this skin pain are two different things. And so far many people seem to be describing the same thing.

I don't know of a treatment either as I've asked every doctor about it. The only thing that seems to help is rest and pain medication. Chilled baths or showers help too. I suspect that it is caused by deep tissue inflammation. Kind of like your body is swelling from the inside out.

Maybe with enough people talking about it they will come up with something.

Feel Better - Andy

 
Old 05-28-2004, 08:01 AM   #5
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Re: Wondering

Taurus, does yours hurt to have just the slightest breeze touch it? There are nights that I'll have to sleep with no shirt or bra on and sleep on my stomach because the pain is so bad on my upper back. But of course my hubby has to have the fan on. OMG just the air from the fan hurts when it goes across my back.

Yes QUITE frustrating!

 
Old 05-28-2004, 08:19 AM   #6
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struble HB User
Re: Wondering

I am so happy to know that i am not crazy!!!!!!!!!!!!!!!!!!!!!!!!!!! If I am .. there are at least two of you that are crazy with me! Yes, I am very confused. The Neurologist said "I dont know what it is, and I dont know what to suggest" Isnt that nice?? After my first MRI , he said that the cysts were the cause of the pain. Now after the second MRI with contrast and dye, he said my cysts were congenital and I dont have to worry about them. He also said they have nothing to do with the pain after the second MRI.

My gp prescribed Amitriptilyne when she initially saw me. It actually works for the pain. I asked the neurologist why it works and he said no one knows. I have been thinking about all this and I am wondering, the drug I was prescribed was prescribed for nerve pain, but its other uses are as an antidepressant and a sleep aid. I wonder, if I have fm , and the meds are helping me to sleep better, so there arent as many flare ups???
My feet still hurt terribly when i get out of bed, my heels feel bruised and my arch has a stabbing pain, but all the other symptoms seem less???

any feedback>??

 
Old 05-28-2004, 08:21 AM   #7
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Re: Wondering

Yes indeed, there are times when I wish I could float weightless in a bubble with nothing touching me. It's quite a challenge these days trying to find a comfortable position with my pregnant belly in the way.

When my Grandmother was still alive she would wet down cloths in the summertime and drape them over my skin to take the fire out. I was still a teenager then and she was doing whatever she could think of to help me.

Maybe we should just all join a nudist colony..LOL.

-Andy

 
Old 05-28-2004, 08:27 AM   #8
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Re: Wondering

Struble, I do know, from what I have read many many times, if you are sleep deprived, it can DEFINATELY cause a worsening of symptoms. I was also put on Elavil for over a year - 100mg at night - but I could just no longer tolerate it. I had ZERO sex drive and I'm a newlywed, so we can't have all that lol plus it made me kind of groggy during the day as well.

It did help with the pain though. I still had alot of flares (of course I haven't been firmly diagnosed yet - still grasping at straws), but they weren't anywhere near as bad. Most of my pain is alot worse at night so it made me sleep through it. My legs get really restless at night. I've been off the Elavil since December or January, can't remember for sure.

I did have one neurologist put me on Tegretol at one time for occipital neuralgia, but it also made the skin pain on my forehead go away completely. But he wouldn't give me any more for some reason after that one episode. I have no clue why though!! It's an anti-seizure drug, but it's also given to people for occipital and trigeminal neuralgia.

I need to mention it to my new doc the next time I have some skin pain.. maybe she'll give it to me. Hrmmmmmmm.

 
Old 05-28-2004, 11:17 AM   #9
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Re: Wondering

Taurus : I didnt realize you are pregnant...congratulations!!! I have a one year old, and when I was pregnant I was in pain all the time indeed. Whenever I got up i would have to walk on the sides of my feet for a bit as my arch and heels would always hurt so bad. I never had heated skin until just recently. I had that feeling that nothing could touch my skin and also it was hot to the touch. I remember on Easter I had no shoes on and I walked on the grass and the blades of grass hurt my skin so bad that I had to get off the grass as fast as i got on it. all these things i have been telling my gp and she has no clue. the neurologist was just a plain big headed jerk.

Dee: no wonder i havent been in the mood for my husband lately!!!!!!! hah its the elavil. Yes, and I have a job where I have to walk around 7 miles a day at least on a concrete floor selling furniture. I have yet to find a pair of shoes that i am not limping in by the end of the day. does fm also affect your joints?? I still dont know if i have it i dont know what i have..the neurologist excused me and said he didnt know.......aaaaahhhhhhhhhhhhhh

 
Old 05-28-2004, 11:30 AM   #10
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Re: Wondering

Struble, as far as it affecting the joints, I'm not REALLY sure. I have pain practically everywhere, including my joints. I've read that some people with a definate dx of Fibro do have pain in them. From what I understand, Fibro can make ANY part of your body hurt.

Oh and my neurologist.. LOL he was an ***, seriously. The only thing he did for me was put me on the Tegretol for the occipital neuralgia. He also said I was depressed.

Ya know, I find it funny sometimes. Whenever doctors can't figure out what's wrong with you, you just absolutely MUST be depressed.

I swear to God.. we could win the lotto for 10 million dollars, never have to work again for the rest of our lives, be the most beautiful person in the world with the world's greatest body, be the smartest person in the world.. have whatever the heck we DO HAVE, but yet they'd still tell us we were depressed.

I DON'T GET IT!!!!!!!!! The ONLY darn thing that upsets me is my health and these quack doctors.. oh and the insurance companies too, I hate them just as much!!!

 
Old 05-28-2004, 01:15 PM   #11
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Re: Wondering

yeah.
i have a one year old who had acid rflux and colic for the first 3 months of his life and we tried to get insurance from blue cross paying out of pocket and they DENIED him because of the fact that he HAD acid reflux for 3 months. I am curious to see what would happen if i quit my job and lost that insurance if i had to re-sign up on my own , would any insurance take me with a visit to the neurologist and two mris on my records

 
Old 05-28-2004, 06:16 PM   #12
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Re: Wondering

Hello All! Struble, you can add me to your crazy list as well. When I had a cat several yrs. ago he would walk on me every morning to wake me for work. I could have cried from the pressure anywhere he touched with his paws. We all understand that pressure pain, I think. I've had FMS for 16 yrs. now; along with all of the other great illnesses that go along with it. I feel your pain! Please do not give up until you find a doc that will dx you properly and who will help you with some relief.

I've had a chiro. for 16 yrs. off and on and if it weren't for him knowing about the disease (his wife has FMS, also), my working days would have been over long ago. We've been told (his wife and I) that the toxins from the meds. that we take get into the whole system and that is what causes the lumps, bumps and ropey feeling when we do touch our muscles. Do any of you have these lumps and ropey muscles that I'm referring to?? That is why it hurts soooo darn much when we go for massage or chiro. treatment. But, if I didn't go, I wouldn't be walking now. I'm convinced of that!! Due to $$$ situation, there have been months that I couldn't afford chiro. treatment and would be in severe pain. As soon as I could get in to see him, there was relief that nothing else would replace.

Sorry for going on so long, but just wanna share my experience. If it can help one person, that will make my day!!

Have a good holiday weekend, Everyone.
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Old 05-28-2004, 08:19 PM   #13
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Re: Wondering

i have two specific knots on the bottom of my back that hurt all the time....i have dreams of them hurting...

 
Old 05-30-2004, 08:57 AM   #14
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Re: Wondering

Well the massage hurts like heck, but when they get in there and break up those knots I come home and drink a ton of water and rest or do light yoga and stretches so my body can sweat and dump out the toxins that cause the knots in the first place.

Have even run a very high fever and face just was beet red and radiated heat, but I was cold at the same time. By morning the fever was gone and in a day or two I can honestly say that my health was back to as normal as it gets for me with much less pain, no headache or flu-like symptoms.

Sounds awful doesn't it, but it works for me at about 3-4 month intervals. This is my way of getting a little better, but it may not work this way for another single person.
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Old 05-30-2004, 09:18 AM   #15
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Re: Wondering

This is interesting ladies, I have this burning also and asked my neurologist and he said that he didn't know. He also said I had arthritis in my neck, well hello, very bad car accident. I haven't been diagnosed with FM but I'm almost positive I have it. I hardly ever go to the doctors and the last three months I'm going. I believe FM is related to trauma, which I've had numerous times and also thyroid, which I also had in the eighties. I have this burning sensation too, my back, my stomach and my chest. I know I'm also perimenopause, but there is something else going on here.

Andrea

 
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