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WomanInBath posted:
I am so happy to find you all.
All of the forums I had found previously were so out of date! No one had posted in 6 months or so, I see a lot of people here daily, it's so wonderful.
My name is Meg and I live in Michigan.
I have been researching this disease since I was diagnosed (about 4 years ago) just to prove to my Dr's that I did NOT have it.
Obviously, I have accepted it but I am still searching for any and all Information.
One Doctor I would like to recommend that you all take a look into is Dr Clauw at University of Michigan. This is not a shill because he does not accept patients!! He puts all of his efforts into research and does a free monthly report to anyone who wants to go listen. I went to hear him and he said things I had NEVER heard before, such as....

Fibromyalgia is heredity. They have found a common gene but are not sure why some get it and others don't.. Most FM sufferers begin symptoms after a trauma. Be it emotional, physical or mental.

Couch Potatoes don't get FM. For some reason us with the gene know that we feel better when we are active so we used to be very active, busy people.

FM IS in your head!! But not the way you think...The brain processes pain many times greater than a normal person.

There are many more things that I cant remember right now but you can check out his name on a web search. He has had the most helpful information that I can find and is the top researcher in the field.
Coming from me.... this is the best I can do for you.
I have been to so many Dr's it's disgusting. None of them listen to me, all of them want my money, when I was out of insurance temporarily--They all dropped me like a hot potato! Would not even speak to me, so much for that silly oath that they took. I could go on for pages about what I think of Dr's, but I wont because it's all negative and I try not to go there. ( I said "Try.")
My FM, fatigue symptoms began after 9 months of an undiagnosed gall bladder infection. The last 2 months of that I was in the Hospital every week just to get fluids because I couldn't keep anything down. Finally, they quit giving me pain meds and sending me home after I refused to leave and insisted that they admit me!! I was rushed to surgery 4 hours later and never really recovered.
To all that have just been diagnosed--Don't listen to those that say it's just going to get worse. I am so much better that I was. I take pain meds and have a pain patch. I also take thyroid med and take Omega 3 supplements, Probiotics, Xanex, Vit. B-multi, and just started Welbutrin. I don't eat much meat, dairy, sugar, bread or processed food which seems to help me...these things increase my fatigue so I try to avoid altogether, but I need chocolate sometimes.
If I could give one piece of advise it would be...DO NOT LET THEM START YOU ON PREDNISONE or other steroid. I was on it for 2 years and then they said O.K., get off it. Sounds simple right?? It took me one full year to get off it, the pain was excruciating. I went from 40 mgs to 0 at .25 mgs at a time. Terrible times.
I hope I havent' run on too much and that you all aren't snoring now, for someone with chronic fatigue...this may have been to much, Sorry!

I really just want to say thank you to all of you for just being out there. I'm thrilled to have found you and I hope that I might be able to help one of you along the way. I have already been helped by some of the things I've read in the short time since finding this site.
I'm so Grateful.
Thank you.
Love, Love, Love.
Meg.
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ncbaseballmom94 responded:
Hi I woulld love to hear more! I am new here as well
Reading your post really hit home with me. How could I go from being so over active to this
Thanks for giving me something more to reserarch
Welcome
Lori
 
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Dollbug responded:
Hello Meg....and welcome.....MiMi in NC.....I just wanted to tell you that this is indeed a very fast paced exchange....you can find someone here most all of the time.....on week-ends...it is not as busy as during the week....but you are so right about other places....it takes so much time to wait on replies, suggestions....or concerns....from other people....

We are indeed a unique group of supporters....and we are all in the same boat....so we know what each other face each and every day with the wrath of the dragon, aka FM....

I would like to encourage you to be sure and review the "member toolbox" and nutrition and vitamins which can be found under the Resources to the right of this page....some very good information for new members....the "sharing your toolbox" which is under the Member toolbox....is a post about some very good "tools and tips" that some of our own members have tried and found to help them cope better with FM......

I do hope that you have already gotten your Vitamin D level checked....if not....please ask your doctor to check it for you....so very important....I do not think you mentioned taking a Vitamin D supplement....but this is really important....

I have to go now....but I will continue when I get back...

Take care...


MiMi
 
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Dollbug replied to Dollbug's response:
Hello again Meg.....MiMi in NC....I wanted to tell you that I am one of those people who also thinks people can learn how to cope better with FM....as with everything else though...it is a trial and error process.....what helps one may or may not help another....we are all different....

I have learned how to "control" my pain by taking vitamins and supplements....but I have issues with the chronic fatigue....but I also continue to try things for it also....I take magnesium and malate, Omegas, Super B Complex. Vitamin D supplement. and Calcium plus others....but these are the ones that help me the most....

I also use a heating pad, hot showers with lavender bath salts right before going to sleep....and I also use Stopain Spray...
and I also try to pace, pace and pace....on things that I need to do...this is not always easy though....

There are all kinds of things though that people can try that will help us cope better.....

I hope that you will post often, ask questions, make comments or suggestions.....

Take care and good luck...


MiMi
 
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WomanInBath replied to Dollbug's response:
Hi Mimi,
Thank you for your tips.
I'll also be posting some of mine with hopes that someone else may benefit from all of my trial and errors.
Love and gratitude, Meg.
 
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kathy6768 responded:
Hi Meg, I am new to fibro, and am I happy I stuck to my guns with my doctor and refused the sturoid based new perscription medications on the market after reading your letter. I did not know anything except I did not want to gain weight and I assumed there were other choices out there. Thank you for all the good info. I read every word and did not sleep!!! Kathy


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