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Posted 9/1/2014 7:47 PM (GMT 0)
How do you all handle this? I got mono in December and every since then have been sick. Fibro fog, tremors, dizziness, widespread pain, concentration problems, memory problems, blurry vision, and now this burning mouth and skin... Ugh I just want to cry. I have had every test.. All blood work, MRIs, CatScans, even a spinal tap... Nothing shows up yet these symptoms are overwhelming. I got better for 3 months then boom muscle pain and burning mouth and skin started. They say it has to all be fibro related because nothing shows up on tests,, but I don't know how to convince myself it's just fibro and nothing bad will happen to me. I've never even heard of mouth and skin burning with fibro. How do you convince yourself? I know the tests are all negative but what if they are missing something? This is so overwhelming how do you cope?
Posted 9/1/2014 9:42 PM (GMT 0)
(((((((((Gentle hugs))))))))

The first year is rough for us until we find a balance. We need to move but still pace ourselves and not overdo ourselves. Eat healthy, rest when needed, and take our medicines if on them.

Stick around and get some great tips on pain management.
Posted 9/1/2014 10:40 PM (GMT 0)
Did you see my reply to your other post. I have severe burning mouth and skin. I tested my house and it was severely toxic with mold. Not mold you can see but it was behind walls and stuff creating a sick environment. I had to have my home remediated. It could take months to recover.

I have fibro and burning mouth and lyme. Burning mouth is not really a symptom of lyme or fibro. I really think it's a mold issue.

Doctors haven't been able to help me either, I've gone holistic too as well.
Posted 9/1/2014 10:42 PM (GMT 0)
steep learning curve, as CT said. The first year or so is learning what helps, what doesn't, how to not overdo, and especially learn the balancing beam of normal life.

We understand the frustration and the pain.
Posted 9/1/2014 10:55 PM (GMT 0)
The only thing is my kids (who have asthma) and my husband have no problems... Only me. I would think if it was mold we would all be having issues
Posted 9/1/2014 11:10 PM (GMT 0)
Some people are more sensitive than others. However, the burning sensation of the skin can be common to many people. Mouth-that could be some different things. TMJ tightens muscles and can affect the whole mouth. Also, some medications can cause dryness.
Posted 9/2/2014 2:06 AM (GMT 0)
It is hard to know so many varying symptoms can be this one disease..and it is easy to worry that other things are wrong. But it does sound like they have worked hard to rule other things out.

I know i am very sensitized to so many things, enviromental things that i am exposed to...ie..most plants in a confined space( indoors), cleaning chemicals, newspaper print, barometric pressure. Also have many sensitivities to medications...i know not everyone with fibro seem to have these super sensitivities but they definitely exaspcerbate my symptoms.

Having said that, can you relate anything to when this burning mouth and hot skin thing began ? Since our nerves are definitely involved , it could be nerve related. Some have itching, or bee sting feelings, so burning seems also possible?

Does anything relieve this symptom for you?
Posted 9/2/2014 2:08 AM (GMT 0)
The only thing I can relate is stress. I had been very stressed out before it started but other than that, nothing was different.
Posted 9/2/2014 2:11 AM (GMT 0)
Mandi,

Looking back i noticed the concentration problems, do you know if they have checked your vit d levels...although we have some of those issues with fibro...low d made mine incredibly worse, and as the d comes back up it is improving.
Posted 9/2/2014 3:18 AM (GMT 0)
Mandi Jayne,
I still firmly believe that anxiety is causing some of your symptoms. You are going to have to use some good o'l fashion self talk. When you find yourself going around in circles in your mind with worrying over the symptoms you have to jump out of that circle. Fibro can cause soooo many symptoms. You must trust your doctors. I was like you too in the very beginning 14 yrs ago. I was certain I had a brain tumor or something and they just were not seeing it. I did this to myself for a good couple of yrs, then symptoms started leaving and others would crop up. It was then that I had to tell myself daily sometimes hourly , It is just fibro, I will get better, I may not see it now but eventually I will. AND I DID!!!! I am soooo much better now then back then. You will be too. You will see.

Are you taking anything to help with the anxiety? Xanax helped me immensely in the beginning til I found a decent medication and then learnt cognitive coping skills. I still have my days every once in awhile but now I can talk myself thorough those times. It is gonna be a bumpy first year or so til you find what works for you, but again you will.

Remember we are here for you, so keep posting. I know it is scary but you are going to be ok.

Gentle Hugs
Michael
Posted 9/2/2014 4:28 AM (GMT 0)
Micheal,

Can you give us an idea about the coping skills you learned..i know a rheumy who refers for that but he does not take any insurance.

Lj
Posted 9/2/2014 6:32 AM (GMT 0)
Mandi, have you read books on fibro? This really helped me understand about fibro. I learned symptoms of fibro too. This reduced my anxiety so much and I even saved lots of money too. I realized my symptoms were fibro related so I knew I didn't need to go see all these specialist.

Most all fibro symptoms can be managed on your own. This forum can really help you learn how to managed them better. I would write down each symptom making the worse first. Then I would work on a treatment for that symptom. Then I would go down to the next symptom. It was in no time I got my treatment plan for my fibro. It worked well for me.

I really do believe if you educate yourself on fibro your anxiety about fibro will decrease. I remember being the same way many years ago. Once I read books on fibro and involved myself in the forum my anxity reduced. I know yours can too.
Posted 9/2/2014 1:19 PM (GMT 0)
Mandi, as I suggested before, do get checked for Sjogren's. This illness causes dry mouth and when your mouth is dry, it seems that it would burn, too. Our Sjogren's forum can answer this question.

You can overcome fibro but the first step is to accept this illness. It doesn't sound like you have. You have been given so many tests to rule out other things and that's what they have to do to give a diagnosis of fibro. There is no good test for fibro.

Since all the testing has been done, you now need to accept the diagnosis. Fibro is a weird illness and has a variety of crazy symptoms but you will get used to it...if you allow yourself. And as Michael suggested, I also think anxiety is playing into this. Anxiety is nothing more than fear but this fear can cause even more symptoms. Plus the stress you are putting yourself under will cause even more pain. So start doing deep breathing exercises. Take a deep breath and blow it slowly out of your mouth like you are blowing through a straw. If you hyperventilate, cup your hands over your nose and mouth and breath that way for about a minute and you will feel better.

Yes, fibro is a crummy illness but it isn't a terminal illness. Plus, once you accept this and settle down, you can find things that will help you control the pain and fatigue. You can do things for yourself like gentle stretching and gentle daily exercise, meditation (praying for some), pacing yourself, and even things like gentle massage will help. Supplements like vitamin D3 and magnesium malate have helped quite a few here. You can make a list of the blessing you have and the negative things you have and you will see you have far more positive things in your life. Now don't forget things like hearing, eyesight, family, friends, etc. We tend to take these blessings for granted. Also, in Fibro 101 there is a good link about how to maintain a positive attitude when you have chronic pain. That should help you too.

The bottom line is not to dwell on illness. Don't do a body check to see how you are feeling. Instead, make some plans with friends and go and enjoy life! You will be surprised that when you are focusing in other things that fibro fades somewhat in the background. When you find what helps you control your pain, you can live a full and enjoyable life in spite of this illness. I have. I've traveled a lot, done things like parasailing and snorkeling, and raised three wonderful children. None of this happened until I accepted this illness and started to control fibro....not fibro controlling me! And if I can do it, so can you. I know you will be successful because you want this badly. So start doing some of the things I suggested. Others will come on with suggestions of what they did to help them. That's what is great about this forum. I hope you start feeling better soon and...RELAX!

Sherrine
Posted 9/2/2014 1:59 PM (GMT 0)
My sjogrens came back negative but that doesn't reallyean much it can come back negative and you still have it. Your correct at some point I have to accept this. I had just accepted the brain fog, dizziness, concentration problems.. And then the burning started and that really set me back. They are going to try lyrica to see if it helps the burning sensation. It's a pretty awful feeling to feel like your mouth and tongue and skin burns. I am trying to come to grips that though this may not be a typical symptom it must just be my symptom with fibro.. Otherwise something would have shown in the test. If I could come to grips with this I think I'd finally be relaxed. Thank you for such great advice. This isn't the easiest thing I have ever went through
Posted 9/2/2014 3:15 PM (GMT 0)
I do have a brain tumor too. Crazy thing is, it's not the cause of my symptoms at all. I have a family, only I am very ill. I've been very ill for about 9 months now. My fibro doc basically told me there was nothing he could do to help with burning mouth. My lyme doc couldn't help me. The traditional doctors around me are phenomenal and no one could help.

Your mono tanked your immune system and opened the floodgates for whatever toxins you are being exposed to or have been exposed to, to take over.

My burning mouth started 4 months ago out of nowhere. If you can afford it, then have your home checked for mold. Especially if your kids have asthma. I had shockingly high levels of mold, for the past decade. My burning is better since remediation but not gone. I have severe burning skin, just like you.

If you have silver fillings consider mercury toxicity too.

I believe in fibro, I have it. I don't believe in no recovery. I believe that it can't be cured because they give everyone the same medicine that may not work and doesnt address the root cause which can be different from person to person. I think it's immune system dysfunction all caused by different things. But that's just me.
Posted 9/2/2014 3:18 PM (GMT 0)
Mandi, I'm glad you got Sogrens ruled out. I did find this about Burning Mouth Syndrome. It sounds like this could be your problem and you can get relief! Do see a dentist with great review and education. Check on healthgrades.com. Here is the link about Burning Mouth Syndrome.

http://www.sciencedaily.com/releases/2013/10/131023100957.htm

Sherrine
Posted 9/2/2014 4:41 PM (GMT 0)
I thought burning mouth too but you skin doesn't burn with burning mouth
Posted 9/2/2014 4:43 PM (GMT 0)
Just because symptoms occur together does not mean the same condition is causing them both. Skin 'burning' is quite normal for fibro.
Posted 9/2/2014 5:29 PM (GMT 0)
I went to the ENT 7 times, the ER twice, had my throat scoped like 3 times and had a CT scan and went to my dentist..all for burning mouth. My fibro doc said that burning mouth is different than fibro but who really knows. This is a mystery to everyone. I don't think anyone has the right answers yet. You might get prescribed magic mouthwash. It didn't help me but you can try.
50% malox and 50% benedryl. mix and swish in your mouth - don't swallow!
Posted 9/2/2014 6:56 PM (GMT 0)
Burning Mouth Syndrome is a separate problem....not from fibro. I have very bad back pain. Part is from fibro but another part is fri. A spine disease I have...two separate problems.

Yes, we can have the burnong skin sensation with fibro.

Sherrine
Posted 9/2/2014 10:27 PM (GMT 0)
AHHH!!! I never thought about having 2 separate issues at once. Thank You! Thats actually good advice. Here is my ? I know Fibro can cause burning in the muscles but mine isn't in the muscles it is literally on the skin like a sun burn.. can it do that? All this started after my fibro symptoms flared back up (muscle pain, fibro fog dizziness) it would make sense that maybe i developed burning mouth with fibro.
Posted 9/2/2014 10:31 PM (GMT 0)
Skin 'burning' is quite normal for fibro.
Posted 9/2/2014 10:53 PM (GMT 0)
Well that makes sense. I just wish there were FOR SURE tests out there. To be honest I worry about Lymes. I have tested negative 2 times for Lymes but I guess Fibro and Lymes have a lot of the same symptoms and I have had so many people tell me a lot of people test negative when they really have it and the dr.s tell them Fibro.

Its so hard to just say "I have this" when there are no for sure tests. At some point I will just have to trust my doctors. I mentioned it to my doctor again today and she said "I truly do not believe you have Lymes" She is a good doctor and I want so badly to believe her and accept Fibro.

The fibro and burning mouth does make a lot of sense. I really hope the Lyrica they put me on will help.
Posted 9/3/2014 12:09 AM (GMT 0)
if you were to have Lyme you would get worse and worse. I. Not talking flares. I'm talking about getting worse and never bouncing back. Fibro is not considered a progressive illness. Fibro waxes and wanes.

Sherrine
Posted 9/3/2014 12:28 AM (GMT 0)
AHHH!! I don't know much about Lymes.. That makes sense. I am on day 1 of the lyrics and i already feel like the burning is less.. I am guessing that wouldn't help lymes much. People give you so many opinions and for someone new to this it gets overwhelming. Thank you all so much you have been so helpful!
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