Wednesday, October 01, 2014

Sunday, May 24, 2009 edith, Community Member, asks

Q: does fibromyalgia make your skin feel like is on fire

i have fibromyalgia and wanted to know if it causes your skin to feel like its on fire.

Answer This
Answers (16)
Mags, Community Member
5/25/09 9:25am

I too have fibromalgia and have never had this feeling ,hey who to say that this illness doesnt have all sorts of causes we dont know about , sorry you are in pain

 

Reply
edith, Community Member
5/25/09 10:51am

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.

Reply
Mags, Community Member
5/25/09 11:27am

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

Reply
julie28, Community Member
5/21/12 3:54pm

  For anyone who can't afford Lyrica, get Neurontin.  It's basically the same drug. Lyrica is expensive as hell, and Neurontin used to be, but the pharm. companies, as they often do, tweaked Neurontin, just a little, enough so it could be called a new drug, once Neurontin went generic. Common trick. But seriously, same drug. And if you order it online through a reputable Canadian pharmacy, even way cheaper. But never order from a "pharmacy" that emails you first, it's usually a scam.

Reply
Mags, Community Member
6/ 4/12 1:17pm

I am not aware of this drug /drugs , and as yet not seen these in the uk . i find it very hard for others to understand what fibromyalgla is as most people have never heald of the illness or thinks it all in your head .Smile  i have read a few books does anyone know of any good books out there about fibromyalgla .

Reply
julie28, Community Member
6/ 4/12 2:41pm

  No books, more internet research. Avoiding the guaranteed cures.

  With American healthcare being what it is, those of us without insurance often have to mail order our meds from Canada. Can you order meds from there? Could give you name of reputable place. It is the only recomended med for FM, and it helps lots.

 

Reply
JPS, Community Member
5/28/10 8:57am

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

Reply
carol anne sloan, Community Member
9/24/11 10:15pm

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

Reply
Netta, Community Member
3/12/12 9:13am

Hello I hope you dont mind me writing to you .I was interested in what you said about Fibromyalgia.I too suffer from this. Some days I am absoutely exausted and so sore I am scared anybody touches me. What I wanted to say was I feel a terrible guilt feeling because nobody sees what I am going through,they only have my word for it.What if they think it is all in my mind .I wondered if you ever felt this

Reply
Josie, Community Member
3/29/12 8:34pm

I know exactly what you are talking about.  When people ask how I'm doing, I tell them I have bad days and I have worse days.  Headaches don't go away, my skin feels like I washed it with acid, and I'm a hurtin' unit.  It seems like all I do is complain about how rotten I feel.  This isn't me.

Reply
Netta, Community Member
3/30/12 1:31am

Thank you for your reply. I am finding it very difficult to cope with .My husband and family do a lot for me to help I hate to see them doing things and I am just sitting. My life has completely changed because of this damnable FM

Reply
Rocky, Community Member
4/27/12 3:38pm
My husband was never very understanding. I was "damned if you do and damned if you don't.". Try to help out too much and he's mad. try to nap and he's mad. Really can't cope with people not understanding a need to accomplish and the subsequent intractable pain. if you saw yourself as a hard worker, than you tend to try to do too much, and then --- well you know. Reply
Netta, Community Member
4/27/12 4:02pm

Hello! Again, I am sorry your husband lacks understanding Fibromyalgia is hard enough to cope with without a little help, from family I am lucky that way. I do get very depressed sometimes and weepy and I dont know why .Maybe it is all part of this miserable illness . My pain hasnt been too bad just now ,but oh! dear I am so tired ,I feel utterly exhausted and I am doing nothing.I have just discovered a Fibromyalgia club that has started near me so I think I will go there and see if talking to people with the same symptoms will help Do you have any club near you. ? Hope you have more good days than bad  all the best  x

Reply
Rocky, Community Member
4/27/12 8:26pm
We're in the midst of divorce court, and he's bringing in neighbors to testify against me. I am not doing the support group thing right now, tho I did go to breast implant support groups in the 90’s. Writing back to tell you about some tests I had done. I also struggle with depression. My new psychiatrist implied that my doctor wasn't running all the relevent Thyroid tests. Thyroid can play a large roll in depression. Google thyroid mood depression. She sent off some adrenal tests and neurotransmitter tests. I have tried to learn what these things mean, and they can really influence mood, and self worth, or a shortage of a certain neurotransmitter can give you suicidal behaviors. The adrenal tests explain why I'm wide awake at night, and not all day. If you are ever interested, maybe we could e-mail. Otherwise, Dr.(Borgen?) On Youtube has lectures on adrenals. Don't know how to share addresses privately, tho. Otherwise, on another day I could post it here, and lots could be interested. Was shocked to find I'm only making 20-40% of estrogen, 2-4% of testosterone, and 6+% testosterone. 9 of 12 neurotransmitters were low. The adrenals make an enzyme that I need to convert thyroid hormone T3 to T4, so with them run down, I needed to find a better endocrinologist. Don't know your age, but I read 20 or 25% of women who are perimenopausal or menopausal can have thyroid problems. See stuff online relating thyroid to fibro, don't know validity. The solutions are never cheap, but I saw a thing about how they have decided thyroid deficiencies should be addressed early, and because they didn't understand T3 /reverse T3 they let me go untreated for years. I wish I had researched to find "the best". Reply
Rocky, Community Member
4/27/12 8:34pm
I meant 2-4% of progesterone. Reply
Rocky, Community Member
4/27/12 9:05pm
I also mean conversion of T-4 to T-3 requires a certain enzyme ( not T3 to T4). I'll learn this stuff eventually. In the meantime, I guess I have to check my work each time. That sweet "fibro-fog". Reply
Netta, Community Member
4/27/12 9:34pm

Hi! It would be nice to e-mail but like you I am not sure how to send my address to you.I dont know  anything about testosterone or estrogen ,but I have had a thyroid test among others .I also have  Spinal Stenosis which doesnt help. Oh! its no fun growing old is it? I am 71 but feel 101 some days !! Where do you live .I am from Scotland.

Reply
Rocky, Community Member
4/27/12 10:48pm
Wow we are far apart on this spinning ball. I'm in Texas. Weird to think we are writing across such a vast distance. i'm 54. i have something called scheuermann's, also a spinal problem. The spine doesn't grow right, and ends up a bit of a hunchback, which makes the whole thing hurt. My feet are also factory defects, and an exboyfried messed my my jaw In '87. I lived in an apartment complex that was sprayed with a pesticide called chlordane, that's not supposed to be sprayed, so lots of problems from that. its a little unbelievable all these bad things can happen to one person, but it's not like it's my fault. maybe the breast implants were my fault-- got a little too insecure I guess, but then they didn't exactly give me a chance at informed consent on those. Wonder if trauma brings on fibro? I was just telling another person here about how when I took a medicine called methotrexate, it took my psyche back to some childhood sexual abuse, and the doctor said a lot of people with fibro have trauma like that. You have your back pain, which is body trauma. My ex-father in law would talk about someone and say "she enjoys her ill health." And I just wanted to talk some sense into him. People don't enjoy it! Just read this forum. I'm trying to picture what it might be like where you are. City? Big? Country? What goes on in your household? Just you and the husband at home? and lots of TV? That's most of modern life on earth. I actually feel TV is the greatest blessing to someone like me. I got an IPad, and I am enjoying it, too. I think I'll never get much in the way of computer skills under my belt because of my memory problems, but maybe they are going to make them as easy as a TV. Anyone know if it's against forum rules to chat it up? Reply
lyndalou, Community Member
6/ 5/12 7:23am

SmileHi!

    You are not alone with people not understanding this kind of pain. Forgive their ignorance...the only way a person can truly understand this kind of pain is through self- experience. Many people think if I have a "good day" that I am finally trying and on a "bad day" that I am giving up. I've stopped worrying about what people think. It is what I think and know that matters. The pain we have makes people feel uncomfortable and they don't know what to do or say so they form these common opinions in their heads that are wrong.

    Our pain doesn't respond to "no pain, no gain" as in normal exercise. I can ride a recumbant exercise bike very slowly for 5 minutes a time and if that is all I can do then that is all I can do. If there is a day when I can't shower, dress and get up, I don't. I am kind to myself because I am the one suffering.

    You need understanding and comfort if you can't get it from your friends and family. That is why we have sites like this that are here to support, help and experience each other's stories.

   God bless you and I hope we are all healed someday and if not I pray for the strength and understanding to get through this constant torment.Cry

Reply
JJ1954, Community Member
2/22/13 6:35pm

I have fibromyalgia and my skin feels like it's on fire, sometimes it's almost unbearable. The feeling comes & goes, maybe once in a couple of months, it starts off like a itching & tingling and the turns into all out PAIN!! I look normal, so people think I'm faking to get attention and sympathy, so now I keep it to myself and suffer in silence. It usually strikes my arms and thigh area. It turns red and I can't let anything touch my skin, it's miserable. I have learned to live with the aching joints and tender spots, I'm pretty used to that, but this burning is hard to deal with. I have found that taking a pain killer aka nsaid helps, also cold compresses takes the burning out, I've tried itching creams, lotions, a haevy layer of vasoline helps, as it forms a protective layer over the skin. Today I am at work and my arm is burning so bad I can't function, so out of desperation I put some baby teething medication on it, and it's was very helpful. the pain didn't go away, but it hurt less. keeps the skin

Reply
Butterfly, Community Member
8/21/12 1:22am
I just stumbled across your post and would like to say what a relief it is to know there is someone else out there who feels what I feel. This is the part I hesitate at, because it sounds as though I am being so negative but here goes.......Somedays my skin is so sore I struggle to sit down, and even clothes hurt and yes I probably look silly when people go to hug me or touch my arm or leg etc and I flinch out of fear of the imprint of pain it leaves on my skin. And most people look at you like you are a bit nutty when they reach out to you only to have you jump a mile. I feel guilty when my husband who is so wonderfully loving and affectionate touches his leg on mine at night simply because we share the same bed space sand I nearly go through the roof in pain but I don't say anything as I know the pain imprint will fade soon, but I never want to waste a single moment with my beautiful hubby...18yrs is no where near long enough!!! :-) He knows of course, that my skin burns, like when you are badly sunburnt and someone rubs your skin! I swear it hurts on the inside too. I also get migraines 2-3 times a week. Have had 3 sinus surgeries that were all unsuccessful and 4 years ago had an accident and ended up with CRPS (feel free to google that one) But, most importantly, my husband and I laugh. ALOT!!! I swear it's better than any medicine EVER!! He jokes and says he married a lemon! Anyway, I didn't mean to ramble on all about myself! My friends know me as such a positive humorous person, I don't like to bring them down with all the finer details of my pain. I wish you all well :-) and much laughter! Surround yourself with it! :-) Reply
Netta, Community Member
8/22/12 2:58am

Hello! again , thank you so much for your reply..You sound so much like myself .I try to be positive about it all , but some days it is so hard .I have other medical issues as well and it just seems one thing after another, but hey! I am here telling the tale , and there are others worse off than me.My husband is a saint and helps me so much .We will be married 48 years in September, so you have a long way to go  LoL If you ever fancy a chat I`ll send you my email .I am Scottish by the way .Where are you from ?.I am off to the doctors soon for yet another blood test bye! for now and take care .

Reply
Rocky, Community Member
4/27/12 3:41pm
I also have skin pain. don't want anything touching that area, and yet I'm a little fascinated by figuring out the margins of the pain, does it hurt when I touch it in this direction? How about this one? It's weird how it comes for no reason, hangs aound, hangs around, and pooff, it leaves one day. Reply
strader40, Community Member
5/27/09 3:22am

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.

Reply
Mags, Community Member
5/27/09 4:38pm

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 ?

Reply
strader40, Community Member
5/28/09 3:26am

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.

 

 

 

Reply
Mags, Community Member
5/30/09 4:34am

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 . 

Reply
tinkk, Community Member
5/ 2/10 4:18am

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.

Reply
julie28, Community Member
5/21/12 3:30pm

Find another GP. Rheumatologists handle fibro. ButI saw this one on tv saying he told his patients to tough it out, football players are in pain a lot (for a lot of money and with expensive drs) and that at least it's not terminal. I was so angry! How many of us sometimes with it was terminal, and how many give up and end it. So you also have to be careful your rheumatologist isn't a jerk.  Fortunately I got lucky on my first try, mine was actually renowned in the field and always helpful. In bad shape now that I've had to move and still haven't found a good pain doc.

  Oh, and yes, I've just started getting burning skin. Or may have had it for awhile and just noticed.  It is our job to try to block out these things, I sometimes have new symptoms for months before I really notice.

Reply
julie28, Community Member
5/21/12 3:32pm

That was supposed to be for Mags.

Reply
lyndalou, Community Member
6/ 5/12 7:27am

Where are you? I know of a great pain specialist near Buffalo, NY!

Reply
Deana, Community Member
6/ 7/10 7:43pm

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

Reply
Marlo, Community Member
7/11/10 9:04am

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. 

Reply
MiseryLovesCompany, Community Member
7/ 1/09 1:09pm

YES IT DOES, it can feel like your clothes are burning your skin.

If you have fibro, I'm surprised you don't already know the symptoms

Reply
Mags, Community Member
8/ 2/09 10:29am
Not all of us have the same symptons as fibromyalgia can attack in all sorts of ways pending on the person health and how bad they have it. I have sollwen arms and legs but others dont and i have issues with my teeth however others dont, pending on you and how bad you have fibromyalgia as symptons change Reply
MiseryLovesCompany, Community Member
8/ 2/09 12:23pm

It's too late now, but I apologize for the short answer. What Ididn't really realize untill the following post is that symptoms of fibromyalgia change. Mine have remained a constant over the past 18 yrs.

The things that are now changing is the severity of pain and protruding discs c-1 through c-7 along with pinched nerves in the neck and R hip that goes out quit a bit during the day.

I don't know which type of Dr. to go see.

testing for neuropathy came back off the charts along with pain level. Dr. thought I may have lupus but don't have all the symptoms.

Oh well....dr's = $$ and when on limited income thats just not something you jump up and decide to do.

thanks for listening and again,

I'm sorry for the short answer/

Misery

Reply
Mags, Community Member
8/23/09 1:25pm

hello and thanks for your response ,there are so many things this illnesses can display that i am sure we dont have them all i have had so many confused messages from doctor's that all i can say to you is to kick back as much as you can and try and find out what is going on with you , no ones knows how you are feeling in side your head but you and therefore that bit i do understand very much that all normal things to others are not to people like you and me

in the UK the cost of going to a Doctor is free but they still watch all costs of the drugs they give you health should not be about money but about getting better .keep trying Undecided

Reply
geegee, Community Member
4/11/10 5:21pm

I have had fibromyalgia for years.  Where the pain is chronic my skin feels like I have a sunburn when touched.  Please tell me me more about your teeth symptoms as I have just started having problem with mine.

Reply
Mags, Community Member
4/17/10 11:10am

Hi There ,

 

I Have had some issues with my teeth ,and had to  have three out however i now have a good looking replaments which i got  through the NHS i am happy they look so nice, my doctor has told me this could be due to all the tablets i am taking that affect the teeth ? there are so many symptoms to this illness who know's what it might be. My teeth have alway's been strong and them out of the blue they started to break up and i was having issues with my month feeling funny .My main problem is sleeping i wake up about four to five times a night and know this is not good for someone who has fibromyalgia as you need deep sleep to heal is this one of your symptoms ? i find the pain at night is a lot stronger than in the day and once i stop moving - find it hard to move and get up from a chair ,do you

 

Mag's

 

Reply
carol, Community Member
9/14/09 2:53pm

Yes it can I have had this for many years(FMS) The severe sun burn feel of my skin seems to come and go. When I think it is gone it returns but I do have relief between times.  I have several friends with FMS ( meet them in a support group). I am the only one who has the burning skin pain.Undecided

Reply
Kat, Community Member
9/26/10 5:27pm

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

Reply
carol, Community Member
9/26/10 5:57pm

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.Wink

Reply
Kat, Community Member
9/26/10 6:40pm

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 !

Reply
safeinmyheart1, Community Member
3/28/11 2:25pm

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

Reply
JPS, Community Member
5/28/10 8:54am

Yes to the extent that I cannot go outside when it is really warm.  I had a lovely garden and due to this illness is just weeds.  Any suggestions?

Reply
safeinmyheart1, Community Member
3/28/11 2:36pm

Your post got the tears flowing... ME, TOO.  :(  I am thinking of my baby crape myrtles, roses, weeds/grass, etc, knowing that I will not be able to maintain any of it. This will be my second or third year of not being able to garden. Anything I try to do, I pay a steep price for later. I'm sure you understand what I mean!

 

My thoughts are with you... I wish I had a solution... I hope knowing that you're not alone in this helps.  :)

 

Blessings,

 

Amy Beth

Reply
shehurts, Community Member
7/13/10 9:31pm

Yes, I had these episodes long before full blown fibromyalgia.  Now I continue to have them sporadically.  Usually areas on my arms...invisible patches of what feels like a sunburn.  I found that topical anesthetics work best....like Ora-gel, for mouth pain...it has lidocaine in it and can be purchased over the counter.  Look for anything with lidocaine...at the highest level you can find among the products for the best price.  If you still have trouble, ask your doctor for a prescription for something....(good luck here though, even my Rheumatologist hadn't heard of we fibromites having this!)  Its called allodynia I believe.

Reply
kcm_ann, Community Member
12/25/10 12:03pm

Hi I got on here this morning trying to get some info on whats going on with my body! I could not sleep last night. I've had restless nights for about a month now. And then between my shoulders there was the worst pain that lasted for a few hours and I got up for 30-45 mins and layed back down and I have had the worst fire feeling pain on the inside of my body all night. Worst with touch. Once you get positioned it will ease off a bit but move and wow! But it was in chest, my sides, & my back. This was horable. Be a statue and your good but move or touch and it's on. Hoping for answers, ideas, and will be looking for a doctor!

Reply
Hurting too, Community Member
2/ 8/11 1:38pm

Yes, fibro will make your skin feel like u burned it yesterday like on the stove or something, very strange feeling. I was diagnosed with Fibro&Lupus Oct09.  It changes your life. Somedays are good. Some are worse .& Some are absolutely horrifying. The episodes will leave yout totally exhausted(after doing nothing). In major pain, to the point where u cannot even stand to be touched or get dressed. The fibro affects my muscles & skin and the Lupus affects my joints. I highly recommend a Rheumotologist & a Pain Management Dr, both. The rheumotologist can get u diagnosed & get you on a drug therapy to slow down the disease. Pain management will be essential therapy so u can continue to function on a daily basis.  You will never feel like you did before u got the disease/diseases, but at least they can help u cope.  I am taking savella for the fibro. & arava for the lupus. Steroids & pain meds are prescribed PNR(but I always have them on hand for when I need them) I am also on wellbutrin-an anti-depressent-because the Dr.(both specialists agree) that this drug type will help with an "overall daily" feel better type thing. (other option for fibro is lyrica-i have never taken myself but I heard it works well, but causes weight gain in some people-which I didnt need) (other options for connective tissue diseases are plaquenil-an anti-malaria drug- wasnt working for me, & methotrexate-chemo drug which I had a reaction to) Of course there are may others as well. I wish you all luck & please remember early diagnosis & treatment is key to slowing down the progression & also feeling better, so make an appt at least with ur Family Dr. to do some basic bloodwork,etc..that is where I started. Hope this helps.

Reply
Rocky, Community Member
4/27/12 9:58pm
I was curious when I read the methotrexate did not work for you. I am chemically sensitive, and when I really needed a way to cool my symptoms of swelling, bruising, pain (elevated ANA connective tissue antibodies, always have inflamation) I tried methotrexate. It was like it went into all the emotional places of my psyche. I thought it was so weird that I was suddenly unable to think of anything positive. All negative things came to the fore front of my mind. I was really crying at my family doctor's office, talking about past sexual abuse in childhood, etc. It was the most bizaar experience, tho I had had negative reactions to meds with crying jags, nothing so strong. I can't take most things on a list of unsafe drugs for people with something called porphyria. Curious if your reactions to methotrexate were physical or psychological or both. That could be really personal, so I understand if you prefer a cone of silence. Reply
Anna, Community Member
9/ 9/11 8:23pm

Yes.

Reply
Diane, Community Member
9/16/11 5:27am

Yes, I have terrible burning itching on my upper arms shoulders and back.  It feels like millions of red ants are crawling under my skin.  I am unable to wear clothes and may have to stop working if I cant find some type of relief.

 

I hear many people complain about the same thing, but never hear of anything that helps.  Ice packs and lotions are a joke.

 

If anyone knows of something that works please let me know.  I cannot sleep or work.  I am going crazy.

Reply
marymurban, Community Member
12/19/11 8:11pm

I have been diagnosed as having fibromyalgia. But not all of my doctors agree. Last night I felt like my whole body was on fire from 10:30 pm til 6:30 am. I put a cold wahcloth on my head but it didn't help. I have been reducing some of my medications like levothyroxine and lithium the past 6 weeks. Today I went hot to cold and back. I take one Lyrica at 8 pm. I went to my family doctor today to take some lab work and check on sugar, lithium, levothyroxine levels along wih other tests. I am praying that I can sleep tonite because all I did last night was lay there and beg for God's help. I am bi-polar and have had bad anxiety attacks  previously. I am coping the best that I can and haven't had a panic attack. I just want some quality sleep.

Reply
Mel Pain, Community Member
4/27/12 7:06pm

Hey, sorry for your problems. I have unknowingly had FM for over 45years. Docs always said it was "Growing Pains." But Edith, the only time my skin felt like it was on fire was when I was pregnant. Are you perhaps pre-menopausal? THAT will get the body cookin'. Best wishes to you.

 

Reply
julie28, Community Member
5/21/12 3:57pm

While I'm here, I recently moved from Seattle to Spokane. Lost my rheumatologist of 20 years and there are no rheumatologist on this side that take Medicaid. I've been told a couple times I should go back to Seattle to see my old dr., which of course I can't afford.

Anyone in the area have a good pain guy who takes Provider One?

Reply
trixierose, Community Member
5/27/12 1:54pm

I have it also since 91 or 92, it started after a car accident.  I jammed my shoulder went to a chiropractor cause the doctor kept ignoring me about it.  but I started hurting every where.  some times I feel like my skin is on fire, can't stand for some one to touch me, like touching the nerve endings.  I take neurontin but not all the time cause it knocks me out but I have nerve pain from my back, arthritis, neuropathy and some times it's hard to know what is causing the pain.  last couple weeks I've been drinking that Nopalea and it seems to help, I'm to the point I'll try any thing.   I've not had to take my pain pills since I've been drinking it, otherwise  I'm on tramadol.  If the doctors haven't  they need to check and make sure it's not something else.  I wish you well and pray the Lord helps us find a cure for it. 

 

Reply
Jeannie, Community Member
6/ 2/12 8:47pm

I am sitting here reading everyones comments, replys, thoughts and discussions and have tears in my eyes.  Sooooo many of these things are what have been and are currently going on with my body.  Over the years but I felt as if I was going nuts and would not say anything so others would not think I was going nuts.  I first noticed pain under my skin as if I had bruises but none were there.  My husband would be like "that cannot hurt" when he would touch me but yet it did.  I want to sleep 24/7, I feel as if I can barely get up and get going.  If I could I would stay in bed all day.  My joints hurt constantly.......I can never get rid of the pain.  Some days one joint will hurt worse than others then the next day it will be another.  Lately areas on my skin feel as if they are on fire while other places are just numb and tingling.  I cannot believe that I am not crazy......I cannot believe that maybe I am not meant to feel this way. I am 52 years old but feel so much older some times.  After reading all of this...........I am going to the doctor....again!  I have been in the past and it seems that most do not want to acknowledge the situation............or even work with me!  However.....I WILL BE GOING!  A smile has come over my face as I am writing this because I feel so much better now!  :):)

Reply
lyndalou, Community Member
6/ 5/12 7:11am

I always suspected that I had fibromyalgia but just carried on with my life the best I could. I was in a car accident and I developed severe chronic pain all over my body. I've tried several medications through a pain specialist. Now I take a medication called Suboxone. It is usually prescribed to help lessen the side effects of withdrawing from narcotic medication but it is also used off label as a pain medication. It helps to control the burning, aching and horrid all over body pain. It is expensive but insurance does cover it. Only a few doctors are certified to prescribe it in their office so you have to find out. It is worth the effort! You won't get 100% relief but it works better than any narcotic med I've ever tried!

Reply
Rocky, Community Member
6/ 5/12 12:49pm
Re: suboxone: go into any drug treatment fully informed please. I would suggest doing a search of the internet. Also see: suboxone - addiction - withdrawal Reply
Carol, Community Member
7/28/12 5:05pm

I could be mistaken but it sounds like you could have a sensory disorder. 

Reply
claimjumper57, Community Member
8/22/12 11:57am

oh,sure it does,its internal yeast infection,and it puts out toxins,and makes youre system acidic,

Reply
Answer This

Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.

By edith, Community Member— Last Modified: 01/01/14, First Published: 05/24/09