Fibromyalgia Community
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Avatar universal

newly diagnosed with fibromyalgia

I've had numerous symptoms for past four years. Fatigue, jointproblems that are not rheumatoid or lupus. Started after mono. Having balance problems and dizziness. Will start lyrics but have trouble with swallowing. My doc says I just have to learn to live with it. I've seen numerous doctors including neurologist,cardiologist,chiropractic,infectious,  until rheumatoogist diagnosed me. Does dribose help? Has there been success with FM institute treatment?  The closest one to me is in Dallas. Where do I start trying to figure this out? I'm tired and frustrated.
5 Responses
483733 tn?1326798446
Welcome to our world, sorry you had to visit.  I have had the dizziness and balance problems and took the medication SERC until it subsided.  I have had good luck with Lyrica although It seems to have stopped working for me now.  D-Ribose does help.  I highly recommend it.  A lot of people have had success (and you'll never get your doctor admit it) by going on an elimination diet and then adding back foods slowly.  Each of us seems to be sensitive to different foods but often it is dairy, gluten, sugar and caffiene.  Research like crazy and share with us here and you will get lots of advice, again, some things work for some and other things for others.
Avatar universal
Thank you for the information.  What does SERC stand for? Does it matter how much dribose you take?
Avatar universal

I also have Fibromyalgia since 2005.  Struggling to support myself financially since I can't do office work any longer.  To sore on the arms. In the meantime I tried D-Ribose but be careful if you have low blood sugar as I do. D Ribose was helping until I got bad headaches. So again, I thought I found something and am too sensitive to its benefits.

If you know of anything else that can help let me know.
1477025 tn?1377468141
Hi loops5,  I'm sorry to hear you are now one of us.  I was an RN when I had a car accident which started my FMS and that was 30 years ago.  They called it fibrositis back then.  I now also have CFS and CMP.  So, in my long experience with this, I wanted to throw out a few things you may not have heard.  There is sometimes a co-existing condition with FMS called Chronic Myofascia Pain (CMP).  Fascia is a sort of connecting tissue that holds everything in your body in place.  It also covers our muscles and is called myofascia.  It's the sticky white thin film that you see covering a chicken breast, between the skin and the muscle.  In the disease of CMP, the myofascia undergos changes and it can actually stick your skin to your muscles (which is why sometimes we don't want to be touched) and creates many other problems.  The muscles themselves can develop rock-hard lumps which are hyperirritable areas of our muscles.  These are called trigger points and need some type of treatment to rid of them.  These points can even "refer" pain to other places of body.  And if we didn't have enough to deal with, the trigger points that refer pain can absolutely baffle both you and your doctor.  Once I was having terrible left knee pain; it would keep me up at night and I had difficulty walking.  My dr. x-ray'd it and we found nothing.  Later, I discovered it was a trigger point in my upper thigh referring pain to the knee joint.  I treated the trigger point and the knee pain went away.  
You didn't state your age, (I'm 54), but your balance problem may be from weakened muscle groups from trigger points.  Trigger points can also develop in your throat and give you difficulty swallowing, (I also have trouble singing).  Sometimes I go through phases where taking a pill can be really difficult.  About 15 years ago, I developed a dizziness that lasted for 3 months.  I was absolutely miserable and the doctors finally concluded it was something in my middle ear that I would have to learn to adapt to.  A few years later, I learned that yeast overgrowth in my system would bring back the dizziness.  I mean the kind in which the room goes spinning.  I take acidophilus now and haven't had a recurrence of the dizziness.  I'm wondering if you've had any other yeast infections lately?  May be a clue.
The best direction I can send you is to a book that has answered my questions when I couldn't find answers anywhere else.  It is:  Fibromyalgia & Chronic Myofascia Pain, A Survival Manual, Second Edition (the green one), by Devin Starlanyl and Mary Ellen Copeland.  It's a good place to start.  Devin Starlanyl is an MD and has these conditions herself.  She maps out locations of trigger points in the body, and goes into great detail on just about everything you might ask.  You can usually find it on eBay or Amazon.
Also, TrudieC is right about the diet.  30 years into this, I have come to realize my poor eating habits have been foolish.  I'm now on a no sugar, no yeast, no wheat, no mold, and no artificial sweeteners diet.  It's tough, but I do feel much better.  Learn what you can about FMS and proper diet.
Well sweetie, good luck.  I hope this has helped some, try not to be overwhelmed about all there is to learn.  It's a very complicated syndrome and it takes time to find what works for you.  My only word of caution is, take the drugs if they are helping, but don't rely on them.  Often side effects will interfere (some are intolerable) or they may quit working for you.  I wish you all the best, please contact me if you would ever like to chat with someone who understands.
Avatar universal
I have a 9 year old daugther which was diagnosis with fibromyalgia on April 17, 2011. Its been so hard seeing her with muscle spasm on her calf and at times on her lower back. The doctor say is a emotional syndrome that something is bothering her. But I ask her and she say no. I am stay home mom a dedicate my time to my girls. I feel helpless! She's receiving physical therapy twice a week and still her pain is to much. The only meds they have given her is motrin and naprozen which does not help at all.

Also in May she started to feel dizzy and started to have faint spell and was admitted in the hospital.[diagnosis with pseudo seizures] She is now doing better with the faint spell but the new one is a ball she say she feel on her lower back and muscle spasm.

All her labs come out normal
I just want to help her and don"t know how.
Thank U
Paula :{
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