thank u for your response it means alot to know someone read my post and cares. please feel free to msg me any time im in need of a friend.

Hello , Thank your reply and yes it always nice to talk to someone who might understand what you are going through there have been times when my hands and feet feel like they are burning and there were also times when i couldnt take a hot bath  that seem to have got better since i have started some new medication called prescibed /Lyrica which i has helped me a lot  i found that some people dont understand my illness therefore you just have to get on with it and at times can be so painfull and the effects on your life can be a nightmare .i have had this two years now and try and control it as much as possable . what about you how do you deal with it

Yes and it's terrible.  What are you doing for this condition?

i to have fibromyalgia i at this moment feel like my whole body is on fire i have this feeling at least once amonth i am a 65 year old female i do not sleep well at all and dont seem to be able to find any thing that can help  carol

I have fibromyalgia and sometimes if feels like the top layer of skin is on fire when i touch it.  It will be in different places on different days. One time is was on my forehead around my eye it burned all day.  Worse when I touched it. The next day it was gone. Sometimes it might be my forearm.  But yes it does feel like fire, like I have a burn on that area.

I hope this helps.

thank you your feed back are your arms and legs swollen .mine have been for two years now, i hold down a full time job and sometimes feel i will not be able to contine due to all the different things that happen with fibromyalgia .My GP doesnt understand or know enough about this illness and has said this is something you have to live with ?

I just recently lost my job of 14 years and my hands would be swollen where I could never get my wedding ring off.  The mornings seem to be the worst.  My ankles will swell and fill with fluid. I also have meralgia peristhetica which is where the nerves that fun through the groin and down the leg are pinched.  My legs have had constant pain for the past 5 years. I am so tired of being in pain, and no one including my husband understand how a person who has these problems feel. Like when I dont have any energy and I look like a lazy person.  My husband does not believe in pain meds. Well, he doesnt know what pain is. Doctors dont know enough about fybro as they also dont know enough about mp.  I am glad I found this site because at least there are people who understand what we go through daily.

Hello, Don'T be down about losing your job it happens to all of us at some point in our life for whatever reason ,i am sure as time goes on and you keep chasing your doctor to help and support you there might be a time when you will return back to work has your doctor put you forward for a pain clinic my doctor has and they do help with all sorts take all the help you can get and the benefit's linked to it .

 At last i have someone who has had the same as me as they don't seem to understand or know why my arms and hands are so big sometimes my legs have a large lumps on on them where they are swollen and  others just think you are fat , some time ago my doctor put me on steroid's . at the start and i felt a new person with 24hours of taking them could walk the dog & stay up late do the garden and all sort but it didn't last once they lower the mg it didn't work the same  . i often feel that other see this illness as something they cant see and therefore you might be making more of it than you should well tell them they should live in your body for 24hours and see what it is like . i do try and control this illness and try hard not to let it get the better of me but i agreed at times it hard all i can say is that loved ones that look and can not  see the pain you go through in your head and body they need to stand back and look at the change in that person no one who is normal is going to put there life on hold and take the pain that this illness give . 

I was diagnosed with fibro in 2000, I have seen many doctors who don't understand or even "believe" that it is even a real condition.  However, I finally found some that do, so don't loose heart..try a rheumatologist, they seem to have a much better understanding that a reg. md.

Yes, I definitely have burning sensation.  Sometimes it's from the top of my head to my feet.  Other times it's a spot on my back etc.

Have you found any meds that help you?  So far I just take tramadol.  I'm leary of the other meds and putting up the side effects.

Thanks,

Deana

Hi:  I was diagnosed with fibromyalgia (then called by another name that my brain has since dumped -- fibromitis maybe?) back in the mid 80's when I was in my mid 30's.  I lucked out and happened upon a great doctor (rheumotologist).  You all know the horror of "not knowing" what the heck is wrong with you before learning of this nasty problem so I won't go there, but having had fibro'm'gia for so long, I've had many different problems from skin feeling on fire, clothing hurting, feeling like someone beat me, temperature/light/sound sensitivity, headaches, sleep disturbances, joint pain, lethargy, stiffness, etc.  I just tried a new bra with no hooks no wires, but very stretchy that you step into  because every bra I've ever tried hurts me so much.  These new ones were WORSE.  The pressure ot the stretch fabric although not painful while I wore it caused wide spread pain the next day everywhere that the bra touched - breasts, sides, shoulders, ribs, chest.  I had to slather myself with biofreeze from my chest down to my waste, back, front and sides to get some relief.  I feel as if I'd been traped in some instrument of torture instead of just trying a new bra.  I am disappointed, but not surprised.  I am one of the lucky ones who has low grade pain most of the time (seems to relate to barometric pressure, temperature and humidity fluctuations and changes), but only have sporatic and infrequent (thank goodness) bouts of debilitating pain.  I try to treat and then igore it most of the time.  I am sorry for those of you who have had people tell you that it is in your head.  It is not.  Don't let them get you down.  If a doctor doesn't believe you or work with you to find something that helps, move on and find another physician.  And that weird set of symptoms that plague you are real, too.  They can change and rearrange themselves over time and wear you out.  Hang in there. 

Gosh I would love to find a support group in NJ here at the shore where I live. Today I am feeling on a 1-10 scale of pain about a 14 ~ Major burning all over my body , mostly forearms and legs . I have had fibro for about 6 years now and sometimes I will go weeks feeling awesome , then all of a sudden BAM , its back to this major pain syndrome. All day I have wondered the house trying to get comfortable to no avaial. I am wearing a loose baggy dress but just the feeling of light linen touching my skin is so irritating. Sigh ....a support group would be so nice , however I doubt very much I could sit through it ~ Best to all ! Kat

We no longer have a support group it broke up several years ago. It was a good thing you find out about how different each person is. We all had FMS, but not all had the same symptoms. Yesterday was a very bad day for me and it seems to come with a weather front coming through after the rain comes in I seem to get a lot of relief.  My favorite clothing is long silky night gowns that don't touch me anywhere. I am widowed so I can wear whatever I want. So when I come in I change into loose clothes that don't bind or touch anything whenever I need to. Please keep in touch and let me know how you are getting along.

Thanks for your response Carol.....I too am alone so I wear lots of baggy clothing ...lol ..probably WHY I am alone ,smile,  but to be honest the thought of someone touching my skin is not pleasant. Too much information , LOL ? Just the truth from this girl. I am a nurse , so I guess I have always found it easy to talk about my body.

Anyway , several years ago I found a clothing line that was atractive , loose and baggy , sort of bohemian and I love it ...Flax by Jeanne Engelhart. Have you heard of it ? Its linen and lose and expensive , BUT , I can vintage peices on ebay and its really all that I wear.  It was a Godsend to find these things because I was virtually a prisoner of my home because clothing hurt so badly.  I wear it all ...the only bummer is ironing it ! I can't even tell you how much ironing I do , but this weekend I didn't mind becasue it hurt to sit or lie down. I am so tired I am dozing in my chair here , sleep is just so illusive to me at night. Do you have that problem too ? I do sleep but I wake up feeling tired. When my husband left because of my illness , I began sleeping in a recliner (way to much to tell) , but to keep it short , I didn't want to sleep in my bed so I slept in that chair , finally I moved the chair up to my room so that at least I would feel like I was 'going to bed'.  Probably doesn't help with the sleep ?

Best wishes to you for a painfree tomorrow !

Kat - thank you for your post. I sent away for a catalog for Flax.

I have given up on meds at this point... all have so many side effects. I don't sleep much at night... it hurts to sit, too tired to stand... the burning has spread to all areas of my body at this point... and I have new symptoms that I won't even list. I have become so sick that I feel as though I spend most of my time "outside of myself" to escape the pain (if that makes any sense).

My thoughts are with you and with all who post here. Hoping you find some peace today.  :)

I am located in New Jersey and would enjoy corresponding with anyone who would like to make a new friend. 

Blessings,

Amy Beth

safeinmyheart1@aol.com