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!

Taz, the WLS helped because I don't have as much weight to carry around and cause more pain. Also, I can now exercise, whereas before, I couldn't. It hasn't really changed anything with my meds, except that I take half the dose of Flexeril now and I am about to start taking half the dose of trazadone. The trazadone helps with sleeping. It is a very old antidepressant that's really only used for sleep problems anymore.

I have a dear friend who has fibro and Cymbalta did nothing for her, either. For me, it was a God-send!

Take good care! :bored:

I was on trazadone for a bit and it did nothing for me. Part of the whole fibro problem is that every single person is a freakish entity... what works for one person is useless for another. At least if we had cancer there would be a general consensus of what drug to take. Fibro is a free for all and that's what makes it so hard to treat. Some days, I swear, my drugs are actually tic tacs painted a god awful orange colour for all the good they do.

I've tried Savella the last two days. It made me very irritable. I don't know if it helped the pain because I couldn't concentrate on anything. I have to agree, Onikenbai, fibro is a crap shoot. We moved a year ago and I'm still traveling the 300 miles to see my doctor.

When I have visited docs in the area, the first thing they want to do is pull the hydrocodone. I take two 10mg a day. Mostly to help me sleep at night. Sometimes I take them earlier in the day if I can't function. I've probably been on the dose for close to 10 years. We went through about every med possible and over time found what would work pretty well. I would like to go to a doc and be asked what I thought would work and what I want to do. The last doc wanted me to go to a rheumatologist. I went to one 12 years ago when I found out I had it. They didn't seem appropriate for fibro. Where does everyone go? I'm not having luck finding an internal med doc. Does anyone use a pain clinic? What a frustrating mess...and propabaly not uncommon. Anyway, thanks for letting me rant. Take care everyone.

Tina

The last doc wanted me to go to a rheumatologist. I went to one 12 years ago when I found out I had it. They didn't seem appropriate for fibro. Where does everyone go? I'm not having luck finding an internal med doc. Does anyone use a pain clinic? What a frustrating mess...and propabaly not uncommon. Anyway, thanks for letting me rant. Take care everyone.

Tina

Hey, Tina. Sorry you're having such problems. I go to a rheumatologist, as does my best friend who has fibro. Nowadays, I believe that's where most fibro patients end up. They seem to be the fibro specialists nowadays.

Good luck!

Hi

I have fibromyalgia. I take Naproxen, 500 mg as needed.,but makes me sleepy. Had Celebrex but didn't notice any differnce & its very costly. or Aleve works just as well.

thanks spideymom for the name of that site.

i am still trying to get things figured out, but that seems to be a forever thing, isnt it? went last week for some blood and work and am still waiting for the results.

how do you, if you do, know when your medicine is helping or you are just having a good day? i guess you dont really, huh? i have been feeling better since sunday. but its weird, i have more energy and am able to do more, but at the same time i feel tired. its strange.

thanks again to everyone for responding.

Hi everyone,

I was DX with Fibro- about 7 years ago. I suffered wide spread pain through out most of my body beginning 1991 while I was pregnant. I had good days and bad days, I used crutches when the pain in my legs was unbearable. There were periods that I hardly left the house I was in so much pain. Everything was a choir and I suffered.

When I finally saw a doctor who did not dismiss the pain with just some Ibuprohen I strated to get a little better.

I had lapband surgery 05/21/08 when I had to change my diet I noticved that I not only felt better but I sleeping better and had a lot less pain. As time went on it got better...

I'm not sure how I came to this ocnclusion, but I guess I ate something or read something. But the important point is I discovered I had aspartame poisioning. Every sweet non-sugar treat I ate had it as an ingrediate. I was using it in my coffee, chew it in my gum, crystal-lite, sweetners, chewable Vitamins...basically my body felt like it was drying. I looked up the FDA regs with regard to this product, they list about a couple hundred symptoms this stuff can give the general population.

I had 50 listed symptoms, to date I no longer suffer from what they called fibromyalgia.

I did have a bout of pain three months ago and the only new thing I added was grape juice...although its not listed as an ingrediate I found out that companies could use the law under trade secrets to not disclose what "natural flavors" are...

So I try my best to use as many locally grown fruits and veggies as possible. I stay away from sweets and I read ingrediants! Oh, back in 91 the new thing I added was diet coke...was never the same again but never thought it could cause such pain through out...

Good luck everyone!

Hi everyone. I have enjoyed reading your experiences. Lana24,artificial sweeteners have always made me feel bad. It's kind of hard to convince people that I cant eat or drink anything with artificial sweeteners. Especially since I am expected to avoid sugar since getting my lapband.

I tried Savella for a few days. First I was agitated, then it was putting me to sleep, then I was getting to the point that I couldn't think properly. I had the shakes the day I stopped taking it. It should not have been addictive after only a few days.?? The only thing I could come up with was it was working with my Lyrica. I would be very interested to hear anyone elses experience.

Want_so_bad, you will definitely know when a med is working because you (hopefully) will not hurt so bad. I hope you will have good luck with it.

For now, I have an appt set up with a rheumatologist. Hopefully I've chosen wisely. I'm not sure the last internist I went to even believes fibro really exists. Oh well. I may try another internist. It will be my third.

Hi Taz,

I hate to say this but I am not so sure it exist either. This is not to discount the pain and suffering I just think there meybe a reasonable explanation for it all. Sweeteners are in over 6,000 american products, if we all had a few sysmptoms that no one could explain then there you go..someone named it fibromyalgia! What if it was all preventable, what if this was done to us? And on purpose no less.

All I know is I was diagnosed and prayed for a quick death because life in that situation was not livable.

Now here I am healthy, no more co-pays, no more dizziness, mental fog, anxiety, stomache pain, fevers, pain and the like. If I had not done the research I would still be suffering. Please people read your labels, taking meds that you may not need will make it worse. I've been there!

Hi, Lana24. I think there are many different things which docs can't figure out so it gets lumped with fibro. I know I was tested for quite a few things (lupus, lime disease, arthritis, and at the end reducing my Lipitor which did help). Most people with fibro can look back to a trama that triggered it. Mine was when I pulled a muscle in my back. It is my understanding that the brain is misinterpreting signals as pain even thoe there is no disease. The great thing is thankfully there is no disease tearing your body apart. The funny thing is it can be one leg one time, a shoulder another time and maybe both arms another time. The bad thing is it hurts like hell and is hard to treat. Over time I'm sure something will be developed to treat it. The sooner the better as far as I'm concerned. :smile:

Taz, glad to hear that you found a rhuematologist. I hope that you find that s/he is very helpful. I know mine is! She is so up on the latest developments and treatments for fibro, it is great. Most internists don't have time to become that involved in any one disease, which is why they are often not as knowledgeable about FM.

Want so bad, you will know that your medicine is working vs. just having a good day when you start to have multiple good days in a row. When your good days outnumber your bad days, that is awesome!

Lana24, that is very interesting about the artificial sweeteners. I definitely had a problem one time with too much nutrasweet. I went for years without touching it, but then starting drinking Diet Coke in 1998 and became addicted to it! I just quit that right before my banding this year. :smile: I do believe you that sweetner poisoning exists, because I've been a victim -- landed in the hospital with a severe kidney infection after a crash diet of nothing but "zero calorie" foods -- but I still think that FM exists, too. There are children who are diagnosed with FM. My best friend who has FM has a son who has it also. My rhuematologist told me that researchers believe there is a genetic link now.

One day I think the mystery will be figured out, but it's going to take a long time because FM symptoms mimic so many other things! That's why it takes so long to get diagnosed, as we all probably know.

Hang in there, my friends, I think we've got a good support group going here. And I know that my weight loss has definitely helped my fibro pain. Anyone else agree?

I hope y'all don't mind me jumping on this thread. I live in the Houston area. We started having cool fronts about three weeks ago. That is when my problems started. I ache like I have the flu, and I have pain in my abdomen where I have had surgeries. I also started having IBS which I haven't had in years. Could this be Fibromyalgia? I do have Hoshimoto's thyroditis. I am going to the endocrinologist on the 22nd for a thyroid check. Is there a blood test for this? I do get relief at night if I take Tylenol and a xanax, but I am miserable in the mornings and evenings. Now, this isn't everyday. Just when the weather changes. Thanks for starting this thread.

Hi Taz,

I hate to say this but I am not so sure it exist either. This is not to discount the pain and suffering I just think there meybe a reasonable explanation for it all. Sweeteners are in over 6,000 american products, if we all had a few sysmptoms that no one could explain then there you go..someone named it fibromyalgia!

Actual physiological differences have been documented in people with fibro. If you do a brain scan and apply a small amount of pressure to the fibro body, the pain centres light up like a christmas tree on the scan, much more than a good dose of pain should do to a regular body. So it does exist as a brain amplification of a seemingly small signal. They just can't figure out why. Whether it is caused by an illness, a chemical in our food or an environmental factor, that is still to be determined. I personally got sick years before the great shift to artificial sweeteners so I wouldn't blame them entirely. Plus my great grandmother had a confirmed diagnosis (under the old name polymyalgia rhumatica) more than 50 years ago, which would go against the "chemicals of modern day are evil" theory. There may be a perfectly reasonable explanation, but I don't think it's going to be a simple one.

well my good day run came to an end last night. i just wanted to cry. not because of the pain, but because it had returned. does that make sense? i was awake most the night. i swear i had menstral cramps if that were possible! bad ones too. but it isnt possible as i had a hysterecotomy almost a year ago now.

this is so frustrating! i know you all feel like this too, i am sorry, i just have to vent. i was feeling good yesterday. went outside to work with the horses. felt great to be outside and working, even getting worked over by a spirited yearling. i drove to pick up my daughter and just in that time i couldnt stand up straight. or pick her up! i had to have my son carry her into the house. i hate it!

and i get cranky and irritable as hell. does anyone else? when i am hurting i am snappy and just basically bitchy. i try not to be. i try really hard to notice when i am being that way. but its alot. i think my kids think i am going crazy. i think my husband thinks the same thing. hell, sometimes i feel that way!

most days i can make it through basically fine, but evening comes and its killer. anyone else like this? any suggestions for this?

thanks for letting me ramble all over the place.

Hi, want_so_bad. I can identify with most things you mentioned. Bad moods? If you could ask my family they would definitely agree. :thumbup: These days if I say something snappy my dh will ask if I'm hurting. He's just asking if he should get out of the line of fire. "Yes. Good idea."

I do feel bad when the sun is going down. I guess it's a change in the barametric pressure. I can also tell if a storm is within two days. We laugh that there is always a front somewhere in the world and I can feel most of them.

I'm glad to hear your messages. I like a place I can vent too. I personally find fibro overwhelming at times as it is for most who have fibro. It's good to hear what other people are going through and how they deal with it. Take care.

Tina