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20 Replies
Tina - September 12

Do any of you have this problem??


Tina - August 14

Name: Tina | Date: August 13, 2006, 3:14 am
Answer: Hello to all.I need to know how any of you can work or do anything having Fibromyalgia.I guess everyones pain is different?.I have pain 24/7 it burns,aches and it feels like i have the worst flue of my life.Also my skin feels like a very, very bad sunburn.My skin is very sensitive to touch and if the airconditioner is on to much it causes sheer pain.And when i'm outdoors and the wind comes my way it hurts my skin and i feel like i'm going to pass out from the pain.Does anyone out here have the same pain as i do?.please let me know.P.S. I feel like an 80 year old who cannot walk anymore.Thanks...Tina.


AK Flyfisher - August 15

My face will still or burn a little on one side only and goes away. Are you taking any meds such as Elavil for sleep? I know it helps a little for pain. Are you diabetic, have you been checked for shingles? I hope you find some relief soon, good luck. Are you seeing a doctor now?


Tina - August 15

Hi:AK Flyfisher hank you for your reply.I take ativan for sleep.It helps me get 4 hours srtaight without the hangover feeling.I have never been checked for shingles or diabetic.I have had lots of X-RAYS,MRI,CT SCANS.I am seeing alot of doctors now.I have fibromyalgia 18/18 trigger points.I was involved in an accident and thats when all of this pain started.Thanks again for your kindness.


TERESA - August 15

Tina I wrote to you in the second part of my note to Karen titled "Suicide" on Aug 13 @ 6:59 PM. Please read it. I would like to hear your response.


R.S.Hagen - September 6

Hi Tina, You just described me to a tee. I am at present under a lot of stress, Have a teen ager undergoing tests for 2 autoimmune diseases, nonstop appointments in and out of town, I too had a recent accident, this was my second, my symptoms came on like a tital wave, had a little pain in my elbow and the burning started and spread all over my body, sometimes I walk like a bodybuilder, you know cant drop your arms against yourside, but not for the same reasons, I have started taking Neurontin..Gabapentin, it is for post shingles/ diabetic neuropothy, also for seizures. It takes a while to adjust to it, and my Dr always starts me on very low doses because my body is so sensitive to meds. It is helping some, I sleep better without the hangover, and my shoulder pain is less stressful. I walked around with my shoulders up by my ears and couldn't drop them for the life of me. I know that Fibro is blamed for a lot of things, but CMP/Myofacial Pain and is notorious for referred pain and burning nerves. You might want to investigate it. Try to get away from your stress, I cant at the moment but you might be able to, and quick caffeine and sugars, and other chemically made foods. Up you intake of antioxidents and BVitamins 50-100mgs/day, this is good for your stress, you might want to try St. John's Wort too, if you haven't in the past. it is a natural antidepressant that can help with stress induced pain.


Anne Hillebrand - September 6

Try this. Use a warm washcloth to wipe off your skin. It that makes it stop, then you are too acidy all over. Cut out acid foods and soft drinks, etc. My own perspiration was so acidy, it was burning my skin all over.


TERESA - September 6

Anne, what kind of freaky medicine are you into? Giving people advice like cut off your taste buds, check the pH of your spit, wipe the acid off your skin, etc, etc!!! YOU are way way, out there girl. I've been to your site & it's just as out there as you are!!! I think you need to be careful about the advice you are giving, you thread awfully close to practicing medicine, & besides it's just goofy!


Tina - September 7

Hi:TERESA Thanks for your reply.I'm sorry that i took so long to get back to you.I have not been out here for a while.About the Suicide post,i cannot find it.I'm sorry.Thanks.Tina


Tina - September 7

Hi:R.S.Hagen Thanks for your reply.Well,you do have some of the same symptoms that i have for sure.I'm sorry that your suffering so much.I have severe fibromyalgia,CMP and i my Doctors are going to look into the possibility of Central pain Syndrome.CPS is the most severe extreme pain any human could ever have.You cannot put it into words.When you try to explain it to doctors they think youve gone mad.It sometimes feels like someone has poured battery acid all over your body then threw you into a bin filled with ice cold sharp ice picks.Your body burns hot/cold.I know it sounds extreme,but it is for real.You can have fibromyalgia and many other illness as well.Having fibro is my base pain.I hope you will find some help to cope with your on going terrible pain.I wish you all the luck and all the best of good health.Thanks...Tina


Tina - September 7

Name: TERESA | Date: August 13, 2006, 6:59 pm
Answer: Karen I would still like to hear from you. I asked you several questions yesterday that if you would answer, we here at this site, may be able to help you better.I hope all is well with you today (one day at a time that's the way we must do it) & I hope you reply soon! To Tina your skin condition sounds worrible! Are there any rashes or sores with it? It amost sounds like shingles. That is how I first began this worrible journey. I also know what it feels lie to be OLD before your time or have people say "what's wrong, your walking like an old lady"or "your always sick". It makes me mad that I can't do all the things I use to do. But I still do what I can & on good day I sometime over do it . I must learn to regulate better. Thanks for listen!


Tina - September 7

Hi:TERESA Hey i have found your message.Ive just learned to copy and paste on the computer and its great.Ive made a copy for this post.Thank you so much for the information that you gave me.well i dont think that i have shingles but my Mother had that 4 years ago.You asked me if i have a rash some people when they see my skin they think that its a rash but it acne caused by my overload of body acid.Does this shingles pain you have hurt every day?or does it come and go?.How long have you been ill for?.For me its been 4 years.I'm 42 years old and when i first got sick i looked 10 years younger.Now i look much older and feel like im 80 or 90 years old.I wish i had a friend like you that could relate to and understand its a whole new life for those of us in constant pain.Thanks again.I hope to hear from you soon.Tina


Tina - September 7

TERESA:::I wonder what happened to that women named karen.She never replied to any of the messages that people had sent to her.I hope she did not do what she was thinking of doing if you know what i mean.Tina


TERESA - September 7

Tina good to here from you! Most people don't bother to reply, you don't even know if your suggestions helped or not. I often wonder what happened with Karen too! I also have lupus & I get a rash from the sun. I had shingles on the right side of my face & rt lower rib area, then constant pain on my rt side. My face pain comes & goes. I than began to experenancing rashes on my face & side. My reg doc sent me to a rheumatologist. FINALY. This was over a two yr period, though I believe I've had lupus for over ten yrs now.


Missy - September 9

Most people out here dont have that type of pain that you have.Fibro can hurt real bad but it will not cause that extreme pain that you have.


Chris - September 9

Hi Tina, I have to categorically disagree with Missy. FM can certainly cause thisi type of burning, stinging pain typical of nerve pain. It is unfortunately on of the many symptoms. check out the comprehensive list of symptoms posted on the main page, it's on it.


Debra - September 11

Hi:Tina I'm sorry to hear that your suffering.You and i have all of the same symptoms to a tee.I have been reading alot about central pain syndrome and you could have CPS and fibromyalgia at the same time.It makes your pain 10 times worse then just having fibro alone.You should read about it on the internet.It is very hard for doctors to find because other illnesses have the same symptoms.I'm hopeing to see a neuro surgeon about this problem.If they can find a treatment for CPS then people that have fibro will be very happy,because CPS is the worst pain any human could ever feel.Studies show that anyone that has any type of chronic pain syndromes would greatly benefit from a treatment for CPS.So lets all keep the faith that they will find a way to help all of us out here that suffer any kind of pain.Untill then try to keep a possitive mind.I know that it seems impossible right now but you need to keep your mind strong.Gets lots of rest if you can,eat healthy and dont forget to take care of yourself first.I know thats hard to do believe me,because i'm a giver not a taker.TAKE CARE OF YOU.....Always Debra.



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