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Savi6262 - December 27

Hi Im new to Fibro. I was diagnosed a few months ago. Can someone tell me if what I'm feeling is normal for Fibro?

It was really hard for me to fall asleep last night and when I did I had a nightmare like I was burning. When I woke up like at 12:00am my whole body was burning kind of like if I had put bengay all over my body, a cold burning sensation. The left side of my chest was also having stabing pains that went into my back. My heart was also beating rapidly like it usually does. I only slept for about an hour. I don’t know what to do anymore. I can’t take any medication because it makes me sicker. I want to stop complaining all the time and have a better attitude about this but I just can’t. I feel like this is something other than Fibro.


Fantod - December 27

Savi6262 - Welcome to the board! I'm sorry that you are having such a difficult time right now. I'm going to give you an overview of Fibromyalgia (FMS) so that you will have a better grasp of your situation.

Fibromyalgia (FMS) is a disorder of the central nervous system that causes widespread chronic pain. It is correctly referred to as a syndrome. FMS is recognised by the Centers for Disease Contol, the National Arthitis Foundation and the World Health Organization. There is no cure but it can be managed with certain classes of prescribed medication. OTC remedies like Tylenol/Aleve do not work for the type of pain associated with FMS. You would only be destroying your stomach and liver.

Inability to sleep is a common FMS complaint. FMS interupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain which rapidly becomes a vicious circle. Managing sleep issues associated with FMS is a crucial part of treatment.

The burning sensation that you describe is probably nerve pain. This is another common problem among people with FMS. Gabapentin is typically the drug of choice for this issue.

I can't really answer your stabbing pain issues. It could be Costochondritis which is another FMS "perk." Take a look at the blue boxes on the lefthand side of this page under "associated conditions." There is a lot of good information there. Have you ever had a cardiac work up? That may be something that you should consider no matter your age.

There are now three prescribed medications used to treat FMS. There are ads on TV all of the time for Lyrica. Cymbalta addresses both the pain and depression that usually accompanies FMS. The newest medication is Savella. It has been used in Europe for decades. It was approved for use in the USA in March 2009.

You say that you can not use any medication as it makes you sicker. Many people with FMS also have multiple chemical sensitivies. A compound pharmacy might be able to reformulate medication into a doseage that you can tolerate. There are compound pharmacies everywhere.

Have you considered seeing a homeopathic doctor to see what they might recommend to help you? I use a mix of convential and holistic medicine to control my symptoms. Melatonin and/or Calms Forte help with sleep. Malic Acid is good for muscle twitching and cramps. Curamin is a very effective pain killer. You can find these items in any decent health food store. Make sure that you understand how to use these remedies and any risks associated with them.

Did you know that people with FMS also react to food additives and certain types of food? If you use anything with a sweetner (including Splenda) get rid of it. Use something like Truvia or Sun Crystals which are made with the nontoxic Stevia plant. Deep fried foods, lunchmeat and red wine (nitrates) may also trigger higher levels of pain.

I'm assuming that you were diagnosed by rheumotolgist. This is the doctor best suited to treat FMS. If you want a second opinion, go online to the National Fibromyalgia Association website and see a list of fibro-friendly doctors in your state. Or, you can call your local hospital and ask for the physician referral service. See if they can match you up with a rheumy and/or a pain specialist (I have both) with an interest in FMS.

If you have additional questions or concerns, please do not hesitate to ask. We have a very nice group of people on this board who are very supportive. Take care.


Savi6262 - December 29

Thank you for your reply.

I am 32 years old and was diagnosed by a rhemotologist back in May 2010. It has been really hard for me. Mostly because I'm unable to take medication. I have tried Lyrica and Savella but both make me more dizzy and off balance than I already am. I have some pain but mostly I can handle the pain kinda feels like I have the flu with achy pain and I also have costochronitis alot about every few months. My main complaint is that Im dizzy and off balance all the time which started after I had the swine flu back in May 2009. After taking Tamiflu I got a lot sicker than I was from the swinefu. The medication made my legs very weak and I've been dizzy and off balance since then. My Dr. sent me for an MRI brain scan which they foung a Pineal cyst, which my Dr. stated that I was probably born with it and that its nothing to worry about. After that he referred me to a Rhemotologist.

I work part time and thats pretty much all I can handle. Even with working part time I miss many days. I can not go anywhere where I have to walk for a long time. I know I would feel better if I got some exercise but am way to off balance for that. I have an 8 year old daughter and a fiance that both love me very much and I wish I could do more things with them but I can't.

I'm scheduled to see a Neurologist soon but I'm just really afraid that I will never have a normal life again I feel like there is nothing thats going to help me.


axxie - December 29

Welcome to the board Savi6262, Fibro isn't what I call fun. By the sound of it, your having a rough time of it, have you considered being checked for inner ear infection.

The way I see it, the burning you experienced is probably from a low pressure, this sometimes happen, when you have what we call a problem with the balance disorder.

I would go see your primary physician and ask him to send you to see a otolaryngologist is a physician/surgeon who specializes in diseases and disorders of the ear, nose, throat, head, and neck, sometimes with expertise in balance disorders.

I had the same as you a few years back, when I first contacted fibro, now I'm doing much better.

Have you have had problems with circulatory problems, have you had a stroke, or have you had an autoimmune prlbem, could be structural, or systemic like having multiple scleroris or parkinson's disease.

I for one found out that what I had was what they call imbalance caused by being on board a ship which we call mal de debarquement, it's a rare disorder of imbalance I even suffer from this condition experiencing seasickness even when I'm not on a ship.


rbonita - December 29

Dear Savi6262, It sounds like my nights... I have fibro since I was 11 ( 17 years ago ) and I stil have nightmares. I used to have a dificulty falling asleep but then my acupuncturist gave me Melatonin... it works like magic but I do tend to have some crazy dreams when I take it but I do sleep for the entire night.
Something else that helped me was changing my mattress. I bought the Natural Form and it does work - it is VERY pricey thou! Try also getting into a routine we, people with FM, really need that!!!!

Good luck!


Fantod - December 29

You should also consider seeing an ENT to have them explore your balance problems. Take care.



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