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Old 06-04-2006, 07:51 PM   #1
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Talking Can Someone Please Help Me??

I have been living with fibromyalgia for couple years and never had this symptom until now.. I constantly ache and burn all over my body... Do any of you fibros feel like your arms, back, legs..etc are on fire with this? I would love to hear your responses... I had bloodwork done and everything was normal except my ana. It has been positive the last 2 years...Please write back...

 
Old 06-04-2006, 11:14 PM   #2
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Re: Can Someone Please Help Me??

Hi Carol, my burning is in strange and usually isolated small areas. Lately is has been my left big toe and I keep looking at it b/c it feels like I have stepped in a pile of fireants! My calves, thighs, and upper back burns often also. I am taking Lyrica to help with that along with a muscle relaxer and pain reliever daily. If I did not do this, I would not be able to walk far without assistance, but do well if I take it. Don't know if this helped any, but maybe it helped you not feel alone in it!
~Mim

 
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Old 06-05-2006, 05:09 AM   #3
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Thanks Mimgregg for your reply. I guess fibromyaligia can make a person burn like that. I am like you, if I am not on pain medication I cannot make it thru the day. My back feels like it is on fire as I am typing. It is a scary feeling, I keep thinking that I may have MS. I am going to get a test done for that too. I am also going to try a higher dose of lyrica too. What do you take for your pain?

 
Old 06-05-2006, 10:28 AM   #4
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Re: Can Someone Please Help Me??

I had horrible burning, even on the soles of my feet and was hopping around. I couldn't stand for fabric or air conditioning to touch my skin. I took Neurontin 600mg every 5 hours ordered from my neuro and it always worked. I haven't had the burning, scraped feeling in about 6 months. So take care and keep the faith that this will pass. I hope you feel better soon.

 
Old 06-05-2006, 02:20 PM   #5
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Re: Can Someone Please Help Me??

Hi there, I take Lortab and Flexeril for pain and muscle spasms. We recently upped my Effexor by 1/3 more and it seems to be helping also. I also take a guafusenin (over the counter) once a day to help with the sinus that seems to be a part of all this. Add in the Lyric twice a day and I can function. I stopped xanax for panic attacks and now take Klonipin at night to help anxiety and rest better. Hope you get some relief! Take Care!
~MimGregg (in SC)

 
Old 06-05-2006, 04:50 PM   #6
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Re: Can Someone Please Help Me??

oh wow hon, YUP! burn big time, take lyrica also but lately have been having some bad side effects from the lyrica, lots of swelling in the ankles, wrists, face because of it, but thats the ONLY thing that will take the fibro pain and horrible burning away from me. does anyone else experience any swelling with lyrica? just my luck, to find something that works and the side effects are putting me on the sidelines because of it. i also take lortab plus soma (muscle relaxer) every day for the pain but that just takes the edge off of the fibro, doesnt touch it at all like the lyrica. also the lortab and soma do not address the burning issue.

 
Old 06-06-2006, 11:02 AM   #7
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Re: Can Someone Please Help Me??

I find magnesium malate is very effective for the burning. Studies show that many w/FM have elevated lactic acid in their tissues, and less ATP than normals do. Lactic acid increases, even in normals, causes burning. Both magnesium & malic acid are very helpful in promoting removal of LA & restoring ATP levels.

Supplements may not provide as dramatic change as quickly as Rx med, but they are generally inexpensive experiments to try, and there are usually few side effects/withdrawal issues.

Good luck.

 
Old 06-07-2006, 07:06 PM   #8
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Re: Can Someone Please Help Me??

Dear friends and Fibromates!

I've been living with this for now 23 years. Of course I lived as you all for a long time without a dignosis. No sense to tell a well knon story. Well, I live in Costa Rica, Central America and work in tourism (I own a small hotel). I've been so bad that once I went to visit Dr. Salas who is the director of the cronic pain national clinic and he told me a couple of secrets: First, use the smallest dose of pain medicine you can. For example: if today you are not so bad, just take an aspirine or Tylenol, Do not take a strong medicine as Tramadol, ecc. .

So, when you really need it, it will work better for you. Second: Do some excercise. I know it hurts and some times to swim is difficult just thinking about changing your clothes. But it works. And third: keep going, do not leave hope apart.

I've been reading recently about a Calcium supplement called Ezorb. Has some one tried it?

Regards

 
Old 06-08-2006, 06:46 AM   #9
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Re: Can Someone Please Help Me??

hey ya'all,
first let me welcome our new face. hi angie! your doc sounds like mine. i exercise every day. it is never cold where you live is it? oh, you lucky girl!
okay on to the burning. how your experieces takes me back in time. i had forgotten the burning. has it really been that long since it happened? so it would seem. how can i forget something that really scared me? amazing. i was put on quinine initally for burning and twitching. i took that for a couple of years. it worked. then my body said no more and went allergic. since then i have taken neurontin 1200mg at bedtime. it is enough and i am able to not take them during the day even tho i can.
each of us is so unique in our journey with fibromyalgia. talk with your doctor. i was tested for ms and do not have it. when i had a stroke in march a brain mri was done. no presence of ms. i was delighted to get that bit of news. no evidence of any abnormality or damage other than the dead area from the stroke. guess my brain healed from the 60's and all that experimentation, giggle.
peace,
blulelakelady

 
Old 06-09-2006, 06:46 AM   #10
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Re: Can Someone Please Help Me??

Hi, Im new to the board. Sooo-glad to find others who understand what Im going through. I didnt know what had been going wrong with my body for the past 6 to 8 years, until the burning started in Jan. 2006. I was in so much pain for two weeks before I finally gave in and went to a local doctor. Been to several over the years with the tired run down feeling and pain in the legs, ect. Most Dr. think its all in your head, and on and off buspar, paxel, you name it. Hate to take meds if I dont have to, but finally this Dr. said he thought it was Fibro---,okay, blood test to check everything., Thyroid low, but we will watch that., I have no insurance, so he puts me on a new drug, Lyrica,. Cost like the dickens, but it did finally put the fire out. Didnt do much for the fatigue. I sleep full nights for the first time in years. But after a couple of months I got so confussed I could hardly funtion. I know you have fog brain as I call it with this fibro-but I really felt like I was lossing my mind. So I go back to Dr. He says, not medicine, here take this Cymbalta, I took it for two months or so, and no improvement. So I decided to gradually get off both and start over. Im trying the magnesium now, it has helped with the pain, and Im fixing to add the malic acid. So glad I found this sight. God Bless all with this condition. Hope to talk to you all more soon.

 
Old 06-09-2006, 11:16 AM   #11
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Re: Can Someone Please Help Me??

Thelma,

It's really criminal that you've been put through this expensive psych drug route! It happens all too often. Most docs get their continuing education from drug reps, who get their commission from the newest most expensive meds.

Please, please, please -- tend to your somewhat low thyroid. Optimizing thyroid function can make a world of difference.

For the pain of fibro -- we know that the majority of fibro sufferers (80% in one study) have elevated substance P in their blood. Substance P is like a magnifier or a megaphone for pain. SP amplifies pain signals. In normal people, SP is inhibited by thyroid hormone.

Fibro sufferers need more than the standard TSH screening test for thyroid that 99% of docs offer. We need to check the free thyroid hormones -- the free T3, free T4, as well as for thyroid antibodies. When the free thyroid hormone levels move into the upper third of the normal range (through thyroid hormone supplements), things improve GREATLY. Many fibro sufferers also find they do better on a combination of T3 + T4 meds, rather than the T4-only meds (Synthroid, Levoxyl) that are universally offered. T3 is esp. great for fibro fog.

The problem with leaving suboptimal thyroid problems untreated is that this puts your adrenal gland "on duty" for 24 hrs a day in compensation for the low thyroid. Over time, your adrenal gland becomes pooped out & then problems really start to multiply.

If you don't have med insurance, it's impt to start with a doc who will run these tests & prescribe based on hormone levels & symptoms. The tests are not free, but they are a much better value, and cheaper than most of the drugs you've named off. Thyroid hormone meds & even adrenal meds are among the least expensive meds on the market.

Best wishes.

 
Old 06-09-2006, 11:35 AM   #12
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Thelma, it sounds like we are in the same situation. I went to a neuroligist today and he seems to think the burning is due to a reaction from either the lyrica or cymbalita the doctors had put me on too. So now I am going to try and see if I cannot take something else and see if the burning pain goes away. I also have low thyroid and I am beginning to think it is related to this thyroid deal. I have not been normal since I had my thyroid removed last year. Even though my levels seem to become in normal range I am still aching,burning, etc... It is very important to have your levels checked. I am having mine checked every 3 mths. The neuroligist didnot seem to think fibromyalgia would cause the burning, but here we go again, with doctors that basically think fibromyalgia is in our heads. If they could just once experience the pain, their opinions would change... Please advice me of what I can take that would help me sleep at night in place of the lyrica and for pain....

 
Old 06-11-2006, 01:01 PM   #13
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Re: Can Someone Please Help Me??

CarolinNC and all,

Yes, do have your thyroid checked first . I went to an endo bdfore going to my rhheumy. She brought my hyopthyroid down to a 1 something from a 5 plus that was supposedly "under normal range". Sometimes this will take care of alot of the problem. Be sure that you have more than your TSH level checked. USUALLY, a good endo will know what to do ( maybe not all). Unfortunatly she helped me me with my thyroid and my osteoporosis but I still had enough pain and burning esp in my head and neck to warrant going to a rheumy who knows about CFS/FM/CMP. BTW, get and save all your recent labs so you can show it to any new doc. When you call a rheumy please ask first before you make an appointment if they even deal with FM/CMP patients. If you don't you will waste time and money. I think you said you were already dxed but don't forget to get a good thryoid check , probably by an endocrinologist.

I have had terrible symptoms for over 20 years but in those days they knew very little except that I was dxed at that time with Ebstein Barr Virus Syndrome which was thought to be at least one of the causes of what is now known as CFS/FM etc. I got a quick dx from her luckily as I had my recent thyroid and arthritis labs with me and I had a good history (I almost dxed myself) I had it long enough to do alot of investigating (-: !! Most of the docs didn't help much and all this time my thyroid was supposedly normal.

As was already said, sometimes after taking care of your thyroid problems that may help you alot, but may not take away ALL the symptoms like with myself. I was an RN years ago so I knew something about medicine but it was so frustrating not getting dx for so long even though I was pretty sure what I had.

I still have the burning but not quite as bad in my head, neck and shoulders but not quite as bad since the doc tried me on generic Flexeril (10mg) at night and when that did little good she also tried me on 0.5. mg of generic Klonopin at bed time (together). I go to see her this week again. It seems to be a little better and have been sleeping somewhat better so she may want to stay with that for awhile

I do agree to take the smallest dosage of whatever you can get away with, if it will help you some. So we will see. May even try the malic acid/mag combo that I understand may help . I figured I would try it after trying the regular meds. Then I would know what was working or giving me problems , etc. Sorry if I repeated some of this - my fibrofog !

Blessings and keep us posted,

Granniluvs8

 
Old 06-22-2006, 04:33 AM   #14
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Re: Can Someone Please Help Me??

For sleep i take Flexeril 10 mg and lamictal 200 mg. I was on xanax, but am tapering off because i have been on it for 10 years and it is effecting my memory. Now i wake up at 4 every morning.

 
Old 06-24-2006, 07:07 AM   #15
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Re: Can Someone Please Help Me??

Quote:
Originally Posted by CarolinNC
I have been living with fibromyalgia for couple years and never had this symptom until now.. I constantly ache and burn all over my body... Do any of you fibros feel like your arms, back, legs..etc are on fire with this? I would love to hear your responses... I had bloodwork done and everything was normal except my ana. It has been positive the last 2 years...Please write back...
hi im the same been like that since i was 13 years old and just about a month ago been told i had fibro i feel releved that i now no why my body burns in places but everyone ive spoke to says the same

 
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