so today my doctor told me i have fibromyalgia. i know a little about it, but am researching, researching, researching. reading on the various websites just makes me wanna cry. its like everything fits. i am not crazy!

does anyone else have fibromyalgia? any suggestions for reading? or for things that help?

she (the doctor) put me on a new medication just approved for it in january, savella. anyone else on this medication?

any feedback is greatly appreciated. thanks!

Hello, I do not have fibromyalgia but I was recently, in May, diagnosed with MS. I was the same way, I knew nothing about the disease and researched it like mad and cried and learned that I had been suffering from it a lot longer than I had known. What made it even tougher for me was my husband leaving me only months earlier, which caused stress and lead to my episodes. I feel like I have to face it on my own. Actually the main reason I have decided to get the band is because I was diagnosed and I think it will help with the episodes in the future. Good luck to you and I am sorry for your diagnosis. You have to stay as positive as possible and find support in your friends and family. Best wishes to you :blushing:

Hi. I've had fibromyalgia for about 12 years. I've never tried Savella but I've tried quite a few other meds. Elavil really helped. It worked great in the beginning but I built a resistence to it over time. Lyrica helps some but it really messes with my memory. I use Zonaflex (muscle relaxer) to help me sleep. I take hydrocodone at night also to help me sleep. Therapeutic massage and accupuncture help. Accupuncture is a surprise since I'm afraid of needles, but they are small and don't really hurt much. Exercise helps by relaxing the body which also can help you sleep at night. Anyway, these are some things that I find helpful. Good luck.

Tina

Edited September 10, 200916 yr by taz

:smile:I have had Fibro for almost 10 yrs.There are varying degrees of it.I do know losing weight,exercising & GOD have helped me through alot.Plus my Dr. put me on Lyrica(3 a day)which has also helped.I had my lap band done Oct.2008,so far I have lost 62 lbs. with 28 to go.It's a real struggle trying to lose the rest.I googled Fibromyalgia,I like immmunesystem.com the best.GOD bless

I've had fibro for a whopping 23 years... since I was 11. It is a vicious circle... the more inactive you are, the worse it gets. This does not mean you should go out and do the ironman, but you should try to do something each day, even if it's go grocery shopping. There will be those days though, when you get out of bed and promptly fall to the floor and have to crawl around the house. Try not to get too frustrated because stress only makes it worse. And for the love of all that is holy, do NOT buckle to the pressure to troop through something even though you are exhausted, in pain and know that you're going to pay for it for the next two days.

Gentle stretching really does help keep you moving. I recommend yoga, but keep in mind that the average yoga video may be hard to keep up with as I find the poses move too quickly. Pre-natal yoga videos are about the right speed for me (aka yoga for hippos).

The doctors all say that fibro is not progressive, but they aren't the ones who have it. Yes, it's technically not progressive as in it's not going to get worse and worse until you die from it, but you may find over time that new symptoms show up. My IBS didn't manifest itself until I was in my 20s, nor did some of my sensitivities. Just when you think you have things under control, something new pops up.

I sometimes think that I got the better deal by getting sick while I was still young. I hear stories of all these people that were humming along merrily with their lives and BANG! they hit the fibro wall and it completely screwed up their lives. I've at least had the chance to build my life around this. I was pretty angry during my teen years that I lost my spot on the soccer team to fibro, and that my violin playing years came to an end much earlier than expected when I kept dropping the bow, but how much more screwed would I be if I had gone to university for music like I'd planned and then lost my ability to play? I had the chance to make education and career decisions around the dumb disease.

This book is probably the best of the lot out there:

Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd Edition: Amazon.ca: D. Starlanyl, M. E. Copeland: books

You may also want to check out the chat room at Fibrohugs. There's enough people on there to tell you something about anything related to fibro.

I have never been formally diagnosed with it, but I have all the symptoms. Massage seems to help me more than anything. Exercise helps too. I have a lot of fatigue. I have never tried any medications for it, but I used to work in a doctor's office and we had a lot of patients that were on lyrica for it.

I have also found that gentle stretching helps. The stretching I used to do when I used to jog many many years ago is fairly short (about five or six) and gentle. One that is easily done is to bend over from the waist and let gravity stretch you out. After a minute or two I am already feeling better.

I also have to say that my fibro continues to get a bit worse. Maybe we are also hit with many more stresses as we age with parents aging and our children's own stresses. (The sandwich generation. :mad2: I have had generally good results from meds and have found a very good accupuncterist.

Edited September 15, 200916 yr by taz
not finished

One that is easily done is to bend over from the waist and let gravity stretch you out. After a minute or two I am already feeling better.

I also have to say that my fibro continues to get a bit worse. Maybe we are also hit with many more stresses as we age...

You get a better stretch if you bend over with relatively straight legs for a minute and then bend your knees a bit while still bent over to get maximum extension. Be prepared for crunching sounds (or at least my back does).

I don't know if it gets worse because of stress, although stress certainly doesn't help it any. I like to quote Indiana Jones "It ain't the age, it's the mileage".

thank you so much for all the replys! i have been having a hard time with all of this. it was nice to read your responses. i have been reading up on fibro, just trying to get a better understanding. i have been hurting more then ever before the past week or so, but yesterday was better. and today seems to be so far too.

i had been taking cymbalta for depression but was changed to pristiq (sp?). the doctor thinks that because i was on cymbalta i had my fibro more or less under control. and now that i am not taking it i am having a flare up. like i said, i have never hurt like this before. my husband is having a hard time with it. he has never been very understanding with my aches and pains. and that isnt changing now. he is a "buck up and deal with it" kinda guy. its very frustrating. i push myself to do things so he doesnt get mad/upset with me. but then i pay for it and hurt so bad and he just gets more frustrated. i wish there were a way i could get him to understand what this is like.

i have to remember to DO something, even when i am hurting this bad. i havent pushed myself to do much of anything beside the normal day stuff...take care of kids and go to work. when i get home i just want to collapse on the couch. but then it hurts even worse to get up! but you all know that, lol. i am going to start to at least do some stretching every night. i did go out with the horses last night. didnt ride, but i did halter the 2 yearlings and then the baby. rubbed them down and walked them some. it felt good to be outside with them.

i am just having a hard time staying positive. all along through my aches and pains all these years i always thought, one of these trips to the doctor, they will figure out whats wrong and fix it and i wont hurt anymore. and now i know that it isnt going to happen. just really sucks, ya know? i am tired of feeling like this. thanks for letting me vent/be a waa baby.

You might want to try Elavil. When I first started it I could tell when it would take effect. It was wonderful. As time went on I built up a resistence to it but it still helps. It might help to just take it when you are having a lot of problems and possibly avoiding a resistence. I'm afraid I'm a bit of a wimp. I do appreciate the times when all you feel like doing is rolling on the floor and moaning. For some people hot baths and showers help.

Edited September 16, 200916 yr by taz
spelled word wrong

I have fibro dx nov 2006/7? MS also dx April 2000. i recently was banded on 9/9/09 and have lost 12 lbs a total now of 32 and notice am feeling better. Massage feels wonderful. Positive attitude will help get u thru. Good luck to all.

i wish there were a way i could get him to understand what this is like.

Tie him in a bag and beat him with a bat.... then let him out and tell him to clean the house. :tt1:

Tie him in a bag and beat him with a bat.... then let him out and tell him to clean the house. :bored:

omg, i laughed so hard at that! how perfect.

Want so bad, I was diagnosed four years ago. I am on Cymbalta, Lyrica, trazadone, Flexeril, and Vitamin D on a daily basis. I take Vicodin for break-through pain. I agree with the pp's that this is a progressive disease. I have gotten worse since my dx in 2005. However, I have gotten better since losing weight!!! :bored:

My favorite place for info is the National Fibromyalgia Association (National Fibromyalgia Association: Welcome to the national fibromyalgia association). They have some really great advice and if you get on their email list, they will send you all the latest news about medical trials, breakthroughs, etc. Here is a link to a bunch of articles about fibro and relationships. There are some really good ones on here about how fibro affects a marriage. You might want to print some out and have your dh read them.

National Fibromyalgia Association: Fibromyalgia and Relationships

Good luck!!! :smile2:

SpideyMom, how did losing weight help? Was it the meds are more helpful or maybe not having to carry the weight around? I didn't find the Cymbalta helpful and I have never tried Trazadone. The rest I also take along with Elavil. It's one strange disorder. :bored: