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Burning Sensations HELP!!

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Posted 8/29/2014 2:57 AM (GMT 0)
confused Im at a loss.

Let me give you a brief background. In December of 2013 I woke up one day feeling "off" weeks later I was so exhausted and had widespread body pain. Finally they tested me and I came back positive for Mono. In Febuary I finally tested negative however I was still having widespread body pain plus several other symptoms (brain fog, dizziness, hand tremors.. ect) They put me in the hospital and ran EVERY blood test they could, MRIs, CatScans, I even had a spinal tap. NOTHING came back. Finally they told me I had Fibromyalgia. We already thought it was Fibro based on the symptoms but we wanted to be 100% sure it was nothing else before we diagnosed fibro.

I got better for about 3 months. The pain was gone and the other symptoms weren't too bad.

THEN eyes eyes eyes eyes

3 weeks ago I woke up with my mouth burning/tingling. I thought it was weird but didn't worry too much. in the last week my mouth constantly burns/tingles, my mouth is dry, and periodically my skin burns like a bad sun burn. I went back to the doctor who ran all the auto immune tests again as well as did another MRI... NOTHING! NOTHING NOTHING NOTHING!!!!!!

They are saying this is a Fibro symptom. Something about my nerves over reacting and I don't need to worry, it won't hurt me. Has anyone with Fibromyalgia death with this? Im praying thats all it is, but I haven't heard of this with Fibro. I am also having muscle aches again with it.

Thank you for all the advice HUGS!
Posted 8/29/2014 3:32 AM (GMT 0)
Mandi Jane,
Welcome. sorry you are here, but you have landed in a great place for advice. I have burning skin. feels like sunburn. sometimes clothes or the bed sheets touching my skin drive me through the roof. I personally do not have the burning mouth symptom, but have read of others whom do have it from time to time.

Fibro is crazy, symptoms here for a day a week or months on end and then poof it is gone and something else whacky and crazy takes it's place. For instance as I am typing this to you now, my left arm has a muscle twitch that is so bad, I believe there is an alien trying to get out. LOL You will get use to all of this and the symptoms will wax and wane. Good days and bad days, never pain free days, but you will learn to manage it.

No one has ever died from the symptoms of fibro. Nothing to worry about there. I can tell by your post that you have some anxiety going on as well. Fibro loves anxiety, these two feed on each other. anxiety will also cause your skin to burn. So what types of things have you tried so far for the fibro? Has your DR. given you anything for pain or anxiety? To really get a handle on this you will have to take a multi disciplinary approach, possibly using prescription meds, supplements, exercise, meditation or massage or stretching or combinations of these. The first year is a lot of trial and error til you find out what helps you, and you will. I have had this for 14 years and work 50hrs a week and stay very active. Going to the beach next week and can hardly wait to boogie board!!!!

Please read the first thread fibro 101 full of crazy good information there. So in closing , what you are feeling is normal, you are normal, just having a little difficult time at the moment. whom wouldn't it is very scary not knowing what is going on. Trust your DRS. seems like they did a great job of ruling out everything else it could have been. Others will be along soon to help ya out as well.

Take care and keep posting. We really do care!!!!

....Michael
Posted 8/29/2014 4:26 AM (GMT 0)
Hi,
Rather than the sunburned feeling... Lot of us feel like we are stung by bees...however we feel it...its seems to be our nerves setting it off...i use a topical pain reliever for the bee sting feeling, but take small doses of tramadol and an anti-inflammatory.

Take care
Posted 8/29/2014 6:25 AM (GMT 0)
Micheal,

I am having that twitching in the calf muscle...thought it was from the low d , just not sure...
Posted 8/29/2014 6:33 AM (GMT 0)
Welcome to the forum! You landed on a great place for support and to learn how to managed your fibro. If you haven't got some books on fibro yet, please get on line or order some. This will really help you understand fibro better. I know it relieved a lot of my anxiety about all the crazy fibro symptoms can cause. You will probably be able to save yourself lots of money by educating yourself.

I know my skin can be senstive at times. I use to have problems with senstive mouth and thrush issues caused by fibro. It took awhile to get that under controlled.

As michael said, the best approach to fibro is a multidisciplinary approach. I have taken classes on how to reduce my anxiety. I rather control it naturally. I do the following to managed my fibro. Exercise, eat healthy, limit stress, rest when I can, see a psych Dr., take magnesium, remron, subutex for pain, calcium and muscle relaxer.

I hope you continue to be on the forum. You can learn so much here. It will probably save you lots of money too. I know this forum really turned my life around. I finally have learned to managed my fibro. It doesn't mean I don't hurt still, but I can live an enjoyable life.
Posted 8/29/2014 3:43 PM (GMT 0)
Thanks everyone! I'm trying to get use to Fibro. If anxiety is not a friend of fibro then I'm in trouble lol!! I have had severe anxiety for 10 years and I'm on medication for it. I think my main problem is I can't find anyone who has had both mouth and skin burning at the same time. I guess at some point I'll realize fibro can do whatever it wants whenever it wants and I just have to get use to that... Maybe after a couple of flares and seeing that it does go away and I'm okay I'll stop freaking out lol.
Posted 8/29/2014 6:30 PM (GMT 0)
Hi Mandi Jayne and Welcome.

I have Fibro but I do also have Osteoarthritis and Neuralgia. I had a bad fall in the beginning of the year. I hurt my elbow badly and my forearm. I have been left with burning pain. I suspect that I have injured nerves. My Doctor said to keep it moving and I have done that. The pain in my neck and head is solid stiffness. My jaw feels swollen and tight. It is not really a burning pain though. Not the same as my arm.

Stress is truly not good for Fibro or for anyone. It is hard to have to accept that you have something that cannot be cured. You can, however, work with your Doctors to find ways to manage to live better. Meds, you just have to try to see if it helps. We all have similarities but we also have individual problems.

You still can mention new problems to your Doctors so that they can decide is there is something else causing them.

Take care.

Loring

Osteoarthritis in multiple joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 8/30/2014 4:50 PM (GMT 0)
Me!!!! I had severe burning in my mouth so bad with a sunburned skin feeling everywhere else. The burning was so severe it drove me to the ER twice in like 2 weeks and I wanted to die. It was the most painful thing I could imagine. I got cancer ruled out and doctors were stumped. I was diagnosed with fibromyalgia, burning mouth and glossalpharyngeal neuralgia.

But..I just had my house tested and it was full of toxic mold. So I kinda think all my symptoms are related to mold exposure.

My burning has reduced since my house was remediated but my mouth still isn't feeling normal. Do you have silver fillings? Mine are coming out
Posted 8/30/2014 5:05 PM (GMT 0)
Other stuff:

I had to spend oodles of money to even get a decrease in this burning..
Change your car air filter
Air purifier in my bedroom
Hepa vac, with hepa seal to get mold out if rugs
House remediation
New bed and bedding

I also had an extremely dry, burning nose.

Right now I only take vit d, c, b12 and homeopathic tissue salts (mag phos) and probiotics.

But I'm getting my mercury out safely with a biological dentist and will do a heavy metal detox after...
Posted 8/31/2014 1:22 AM (GMT 0)
Hi, Mandi, and welcome! You have gotten excellent responses as usual but something caught my eye. You mentioned your mouth is dry. Were you checked for Sjogren's disease? We have several member that have both Sjogren's and fibro. With Sjogren's you will have try mouth and eyes. We have a Sjogren's forum so you might want to check with them about your mouth.

I have had that burning sensation and it's not fun. I had it last week and there was a little rash close by. I had tried cortisone cream for the rash and nothing happened plus it was the burning that was driving me crazy. My daughter suggested Neosporin with the numbing action so I rubbed a little on the rash. The rash remained but the burning went away! I only did this for a couple of days and the burning is totally gone.

I know you can't smear Neosporin all over your body but if you have a spot that is really bad, it can't hurt to try this. It makes absolutely no sense to me but neither does this illness.

As Michael suggested, be sure to read Fibro 101. There are really good links about fibro and you will learn a lot ther. A good starting link for you would be A Thorough Explanation of fibromyalgia. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Do t hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
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