Fibromyalgia Support Group

MercysDaughter, I think a huge part of the doctor's problems is arrogance combined with ignorance. Fibromyalgia seems so diffuse to them with all these symptoms--their time is too important (to them!) to actually read up on something as complicated as FMS, so instead they pooh-pooh our symptoms or refuse to believe that one patient can experience so many symptoms.

I don't know about you, but it took me weeks of research to get a glimmer of understanding as to what was going on in my body and I think I didn't understand a lot of what I read in medical journals & other research materials until I put it together with what I've read on MDJunction written by other fibromytes.

No one knows much about fibro unless they've experienced it close up, I think. I can tell my PCP is researching it and she seems to be behind me in understanding it, but she's getting there.

I'm coming out of a flare now. It was my worst and in my experience so far, each flare does seem to be a little worse than the one before. Or maybe a lot worse.

If it helps at all, my flares do settle down. I'm not in nearly as much pain as I used to be. Some symptoms seem to be permanent (walking on knives in the morning) but some seem to ebb and flow (limbs falling asleep).

Keep hoping you'll feel better. Don't give up.

Lisa - you have literally, down to the tee, described my past couple of years! I don't take the pain medicine you do. I took Vicodin for two years and my doctors were surprised that I had a sever reaction when my primary wouldn't refill it! On top of withdrawal, I thought the pain would kill me! Surprisingly, I changed over to Darvacet, a more mild pain killer, yet it seemed to cover most of my pain yet didn't make my mind loopy. You're right, family and friends don't understand. Unless you have experienced this first hand, it's a complete mystery.

I recently tried taking two of the mild muscle relaxers before bed and it has helped tremendously! I don't know if it will help anyone else, but I want to share anything that has helped me.

Take care Lisa and thanks for sharing. I'd love to print out your note and take it to all the doctors who think I'm a hypochondriac!

You always make me laugh out loud! Thank you!!!

Yes, I've had things fly out of my hands too. Thank goodness I have carpeting to soften the bounce! God bless my son, he just gives me a quick look (from the tv) and asks, "you okay?". All I have to do is say yes and it's back to tv land. He's gotten used to his mother's many weird quirks!

I feel as though my fibro is getting worse. Pain Pain and more pain, will it ever end? Hopefully one day I will find my right dosage of meds for it to be manageable. It does feel as though it gets worse though. Someone had put a post regarding some research as to stages of fibro. it was good reading, I was going to talk to my doc about it but forgot to put it on my list. Silly Cori!!! My little one always says silly mommy! Then I say Silly Kami then he says no you silly mommy! Back and forth we go I love it and it helps to deal with the fibro more.

I have been dealing with this now for atleast 8 years. I still have not found the medicine that makes me comfortable.

Oh come on Barbdubacki don't burst my bubble! Get back here Flex!!

I was just talking with my mom and discussing my latest flare with fibro (not super bad like some of my flares are). We both agreed that fibro might be a cousin to MS. I have the MS band of pain very frequently - circles the area right under the breasts and just throbs with pain. And like yesterday, I did some bouncing of the wall...literally, and I wasn't taking any of my pain meds. I just thought that was an interesting possibility.

I am having strange symptoms They haven't ever been as severe as this. My whole right side of my body hurts. I am having vertigo more than ever. I feel like I have some sort of nerve damage. My whole right side of my body feels as though I hit my funny bone or it has fallen asleep. I see flashes of lights, my right eye keeps, going blurry. Although, these symptoms have always been present it is now constant. The pain is much worse than my stiff muscle to the point that I don't even think about fibro. I am 21, so stroke does not seem appropriate. It started happening two weeks after my laproscopic cystectomy (endometriosis removal). It is an out patient surgery. After I felt wonderful (not even a fibro flare). Now I experience all of these horrible symptoms. I can't sleep, can't sit, lay down, on my side, and etc. It's horrible. I think I might have MS.

There are quite a bit of related conditions in fibromyalgia even to the point where you can have fibro but also have diseases in connection. Doctor and researches have not come up with why these diseases-conditions connect. However they tend to be prevelent to fibromyalgia. I would like to encourage you to research this yourself. It helps to find solutions when you know what is wrong.

I hope you find this helpful. Endometriosis is commonly linked with fibromyalgia and other conditions.

http://www.aphroditewomenshealth.com/news/ 20020830013352_health_news.shtml

The research team from the National Institute of Child Health and Human Development in Bethesda, the School of Public Health and Health Services at George Washington University in Washington DC and the Endometriosis Association in Milwaukee, carried out and analysed a survey of 3,680 members of the Endometriosis Association,3 90% of whom were of reproductive age. All the women had surgically diagnosed endometriosis.

They found that among these women:

20% had more than one other disease

up to 31% of those with co-existing diseases had also been diagnosed with either fibromyalgia or chronic fatigue syndrome and some of these additionally had other autoimmune or endocrine disease

chronic fatigue syndrome was more than a hundred times more common than in the female US population generally

hypothyroidism (under-active thyroid gland) was seven times more common

fibromyalgia was twice as common

the autoimmune inflammatory diseases - systemic lupus erythematosus, Sjögren's Syndrome and rheumatoid arthritis, and also multiple sclerosis, occurred more frequently

rates of allergic and atopic conditions such as asthma and eczema were higher e.g. 61% of the endometriosis sufferers had allergies compared to 18% of the US general population, and 12% had asthma compared to 5%. If a woman had endometriosis plus an endocrine disease the figure rose to 72% and it was 88% if she had endometriosis plus fibromyalgia or chronic fatigue syndrome.

Two-thirds of the survey subjects reported that relatives also had either diagnosed or suspected endometriosis, confirming research that suggested there was a familial tendency.

Here is a article and website:

WOW! to Mercysdaughter87...your info on the endometriosis stopped me in my tracks! My mother, myself and both my sisters had the endo. Me and my younger sister had to have hysterectomies. My mother and both my sisters have the hypothyroidism and my mother, my sister and myself suffer from depression. Also, both me and my sister are diagnosed with the Fibro. It's like you wrote my family's medical history. I want to say to everyone that I don't know how I could get the energy each day to remain positive and make the best of my time without having all of you here. I need understanding and I need affirmation and I need to be able to share and give back. No I'm not all loopy on meds today. I just want to welcome the new friends and send hugs to everyone. Peace to you all....TrishM