Fibromyalgia Community

Hello, Denise.....man, that sounds awful! I don't know anything about that particular symptom, but I did have really bad dry mouth and burning mouth and tongue. That was bad enough....I can't imagine suffering with what you have.

I did discover, however, that the dry mouth toothpaste, Biotene was helpful. Any other toothpaste really hurt my mouth. I, too, was bothered with most things that I ate. Mine ended up going pretty much away after about a year. I finally decided it was part of fibro, or was a result of hormones fluctuating. (I was going through menopause at the time).

If I were you, I'd "google" it and see what you can learn about it that way.

Good luck to you....I hope you find relief soon!
ELizabeth

hi nene

i just found this . . i hope it helps

Lichen PlanusA rare rash that shows up as lacy, white patches or red shiny bumps on the inside of the cheeks or tongue could be lichen planus. No one knows what causes it. Generally, mild lichen planus doesn't need any treatment. If it causes pain or ulcers, it can be treated with oral and topical medication. Oral lichen planus can be chronic and may increase the risk for oral cancer. Lichen planus can also affect skin, scalp, nails, and genitals.

Lovely... I feel like this fibro has turned me into a circus freak!
Hopefully it will stay in one location-in my mouth where no one can see it!

Hi,
I'm "new" to this Fibro thing.
I thought I had Lyme's disease this summer (as I well may have) but the symptoms persisted AND I developed oral lichen planus.
I haven't put the two together, but I found this post.
I know they're both autoimmune diseases (or syndromes).
I've just started Lyrica (religiously, 2xaday it makes me foggy and tired).
I also saw a periodontist for the mouth sores and am using topical steroids (better but not really going away).
He suggested I see a nutritionist.
UGH!!!
I was SO healthy in April and then Wham I got this in May and it hasn't gone away.
Thanks for being here (-;
Beth

Beth,
Sorry you are dealing with this. I refused the oral steroids & the ENT doc never suggested a topical form of steroid.

Just curious, what is the name & strength of the topical steroid you are using?I hope it will relieve some of the swelling.

I saw a nutritionist last september-I did the liver detox diet for 1 month & it did nothing for the lichen planus, although it magically helped with my migraines.

Thanks for posting here!
Denise

Hi Denise
That sounds awful! As if you need anything else to go along with this nightmare called fibromyalgia. I have had random rashes on my body for a long time. Have been checked for Lupus but thankfully negative. I hope you can find an end to this.
Beth in AL

I find the topic of rashes very interesting. I have developed a rash from the irritation of my clothing over the last year till now I can hardly wear anything that is stiff around my waist or trunk.
When I wear anything like jeans or cords that have the sturdy stitched waistbands, I break out with a raised red very itchy rash everywhere it rubs. This area will be very hot to touch. After I remove the offending clothing, it will take up to 2 or 3 hours for the rash to go away.
The real problem is that the rash doesn't just stay there, but spreads over my abdomen and up over my ribs. If I wear a bra that is stiff or tight, the same thing happens from that. An irritating label tag on clothing will set off the same reaction.
I'm getting to where I don't care how I look as long as what I am wearing is soft and flexible with nothing to irritate my skin. LOL

Lichen Planus - had this auto immune illness 2 years ago. Lips, hands, feet, legs. Itchy, red raised bumps and to top it off, scaly psoriasis on my elbows too which were really inflammed. Brought out by stress and age and most likely underlying fybro, which my own internist refused to diagnose me with. You need to see a top notch doc in Dermatology, which I did and after a year of very aggressive topical creams, steriod injections it finally dissapeared. My lip is scarred and bumpy and cracks all the time but that is all I have left of the offensive and irratating rash. Google this rash, pics and descriptions will help you understand. Please go to a Dermatologist. I was finally diagnosed with Fybro a month ago by a specialist. It took over 6 years to get it right. Hope this helps. and btw I am not taking any drugs for Fybro, I am tending to it holistically, not bad but helps and I would rather be FOG FREE and live life.

Hia.
You might want to try a prescription called IOWA. You should be able to get a prescription from your ENT Doc. It is a compounded liquid solution. It has tetracyline, benadryl, hydrocortisone and nystatin in it. You swish a little in your mouth and then spit it out. Like twice or three times a day. You have to keep it in the frigerator. My mother had been having mouthsores,redness, lots of discomfort. Her ENT did a biobsy, everything was ok. My mother was on a steriod cream for about two weeks until we got the results of the biobsy. The ENT also told her to take 500mg lysine tablets, twice a day to help. These are over the counter pills. The ENT and I was very impressed with how her mouth healed up in two weeks.
Hope this helps.
CJ

I have been dealing with Fibro for many years, however the past 3 years, I have been getting covered from head to toe with psoriasis. As my Fibro gets worse with age, the skin problems get worse also.
It really is the most disgusting thing I have had to endure. I finally went to a dermatologist I liked and we are very aggressively taking control of the problem. I've done the topical treatments to no releif, now i'm going with the biological route.
I truly believe the fibro and psoriasis are connected somehow. I've not had to deal with mouth sores but I do sympathize with y'all. i can't imagine!

I have the same problem but in my private part... it is painful....I don't know what to do

Oh my gosh An_143...when you wrote...*I would rather be FOG FREE and live life*...I said right out loud...*me too* and started to cry. I have severe Fibro...and Pulmonary Fibrosis...osteo arthritis...just had another MRI last week because I've been almost completely bed-ridden since this past Christmas. I was diagnosed with the Fibro...22 years ago. The prescriptions prescribed all had horrible side effects manifest and I couldn't use them. and the new ones are worse on me. I have always been holistic in my approach to health and wellness until my choices ran dry. Because medical cannabis is not legal in my state of SC...I am now on morphine twice a day and...I wouldn't have to be if mmj was put back into the US Pharmacy as the number 1 choice for safe pain management and the fact that when it is used in a non-smoke delivery method...it has healing and regenerative properties for the patient. Even my own doctor told me off the record...that mmj should be the first choice for someone like me...but it is such a political issue...I may succumb to my condition before it will be legal to prescribe it. It's the only safe alternative to all the Rx's offered to us at off the chart prices My doctor told me...if I was able to get it myself...and make a butter extract of it...and use it on a piece of toast or stir it into my tea...3 to 4 times a day as needed...my quality of life would improve all around. Well...I asked one of my adult sons about it and he said...*easy to get mom* and he did. I googled how to make cannibutter...and I did. I just had to see for myself. It was especially shocking to my son because I got on board the *Just Say No* campaign like a devotee...and gave my kids a very hard time about cannabis. Well...they weren't using it as a medicine...or if they were...getting drunk on top of it...completely negated any health benefit they may have gotten. It's different when looked upon as a medicine instead of a recreation substance. I had enough of the butter to last a month. It was the best month I've had pain wise since 1972...and my disposition was wonderfully cheery My family was amazed. me too. Now I know what those bumps were in my mouth. gosh. Thank God they're not there anymore. The morphine does not come close to giving me the relief and mobility that the experimental cannabis did. I am frightened at the thought of going to jail. No one can take care of my birds like I do. So I will wait until the law changes but I wish I didn't have to. Anyone reading this...if medical cannabis(mmj) is legal in your state...ask your doctor for a written recommendation and go to your local dispensary and get some. oh my sweet Jesus...God provided it for our proper use and...well....it's a sad story isn't it?

I read these comments all the time but this is my first post. I have been thinking I am crazy and causing my rash. I do get mouth ulcers for no reason (no strep or anything) and a rash all over my skin. The ulcers just started occurring within the past couple of months. I've brought the irritation and discomfort up with my dr. and he said I just had dry skin... I feel relieved to have found that I am NOT the only one suffering. I am not on any medications for this to be a side affect at this time but have taken them all. I am 23 and was diagnosed in '08 with fibro, carpal tunnel syndrome, and arthritis.
I am doing hollistic care now instead of medications and receiving more benefits and better results than I have had with any nerve pain meds, narcotics, muscle relaxers, you name it. They've had me on it all.
My therapy is called brain-based therapy that I have with a chiropractor. It feels amazing to be lifted out of that fog and feel free of all side affects that the meds caused. Glad you have decided to go this route. I think in the end it'll be healthier and a lot more safe with our bodies and how it manages our pain disorders and handles stress. -S

Hi grandmotherbird! I actually commented on the post you commented on as well. I am only 23 going to be 24 March 7th but I've suffered since a child not knowing what was wrong with me and thinking it was just in my head.
I've been diagnosed with several painful disorders or syndromes and have found that the hollistic approach is showing better results than any narcotic. It is however a slow process since our bodies are 'too sensitive pain' to do anything too aggressive. I actually in my lowest of lows just wanting to do anything for a little relief thought about this and how it might even help me adapt to all the changes I've had to make this past year and even my PTSD I suffer from an even that occured when I was a child.
I have to say before I found the hollistic approach of brain-based therapy I had lost hope. I wasn't able to do holidays or birthdays and I had lost all of my friends b/c they didn't understand and being in intense severe pain just makes it hard to see the light!!
Anyway, did it help with your stress and how you adapted to life in general and you say it does help with the mobility??? I cannot stand the fog either or the side effects and the problems I now have due to the stupid meds. I am desperate for relief from just one of my symptoms that doesn't involve the highest mg of xanax or narcotic... my stomach doesn't even allow it anymore.