Calling for help for a friend.

[xiane]

My friend medraxellion has a problem.
Her mother was recently diagnosed with Fibromyalgia [as well as some other issues] - and they don't know where to turn for info or help. I mentioned that I have several friends who either live with Fibro or have loved ones who do, and got her approval to post a call for recommendations. Can anyone give her some help? I suspect that besides links and recommendations, hearing some stories about people living with this would also be really helpful.

Thank you, everyone.

Comments

[o0olellyo0o.livejournal.com]

http://www.fibroandfatigue.com/


this site has been infinitely helpful.
their denver center has changed my life for the better.
they're the ones who found a lot of the underlying issues of my pain and are addressing them instead of just patching over symptoms with pain pills.

[xiane.livejournal.com]

I didn't know you were dealing with this, Miss Lelly.
Thanks for this; knowing that they've been personally helpful is a big recommendation.

[o0olellyo0o.livejournal.com]

yea, i try not to talk about it too much.
i don't like the whole "ohhh pity me" crap.
yea, it sucks. a lot. but it could be a lot worse.
i'm alive & i have my hearing and sight, so i'm not going to cry myself a river.
i also dont like having people treat me differently.

[medraxellion.livejournal.com]

Thank you very much for the site reccomendation. I'm going to have my mother look at it when she has the time also.

[o0olellyo0o.livejournal.com]

i can't say enough good things about that place. =)

[krasota.livejournal.com]

The major resource is Dr. Devin Starlanyl: http://www.sover.net/~devstar/

Her books are great. Her website is useful.

I'm sure you'll get recommendations for the spoon theory, but it rubs me the wrong way. I prefer the Open Letter (for some reason, the original sites are down. drat).

If her mother didn't go through extensive testing to rule everything else out, she needs to get that done. And I mean *everything*. Too many doctors say, "hrm. You hurt. Let me press here and here. Fibro!" without testing for RA, MS, nutritional deficiencies, lupus, thyroid problems, celiac disease, diabetes, hypermobility, porphyria, etc.

And fibro is still just a wastebasket diagnosis. At the very least, yearly panels for liver, thyroid, autoimmune, and endocrine thingies need to be done.

[xiane.livejournal.com]

I knew you'd have some useful info. Thank you!

[o0olellyo0o.livejournal.com]

yea, the fibro & fatigue center did a tooon of tests on me. everything they could think of, i swear they took like 15 vials.
they found lyme disease.

[krasota.livejournal.com]

The infectious diseases specialist alone took 27 small vials and 5-9 large vials when I was first ill. The rheumatologist and endocrinologist each took 5-15. The neuro only took one, but he also ordered all sorts of oh-so-fun nerve tests. I get two-five vials drawn every couple months now that my doctors want to chart my Iron and B12.

I still have fibro, but my CFIDS is in remission after nearly two years of a gluten-free diet and a couple months of IV iron. Things are looking up! Celiac disease is much better than the MS and lupus the docs were convinced I had. ;)

I always test negative for Lyme and always have, but it's another important thing to test for. I'm allergic to doxy, so it's probably good that I don't turn up with rickettsial infections. My doctor does order a blot for Lyme every year because I persist in getting exposed to ticks. ;)

I'm glad that they figured out you have Lyme! Treatable disorders are much better than syndromes that can just be alleviated without real help.

[o0olellyo0o.livejournal.com]

that's awesome your cfids in remission.


smart doctors doing all those tests, for years doctors just told me i was "depressed" these are the drawbacks of being young & not looking completely normal i suppose.


they discovered i've also got some hormone & thyroid issues, but that runs in my family.


i am SO TIRED of pills, injections & IVs (IV antibiotics for the lyme, & one just with vitamins and stuff..) dear LORD.

but....i'm not going to look a gift horse in the mouth, these people are actually making a positive difference in my life.

[medraxellion.livejournal.com]

First off, I'd like to personally say thank you for your help. It's greatly appreciated.

I'm not quite sure if my mother went through the "extensive testing" or not. She's been complaining of pains for years and we all thought it was because of her car accidents she had a while back. But then things got a lot worse. She has this sleeping disorder I forget what it's called, but she can't get into a proper REM cycle due to her breathing. They put her on a machine but it still doesn't help much. Then she has constant migraines, but she's had those for even longer than the pain. Over the years the doctors have put her on different pain medications, thinking it was just back problems, neck problems, etc. But they have never helped.
She DOES have diabetes though, so a lot can be attributed to that. But the doctor that told her she had fibro today is a specialist, I forget what kind, but he's been trying to help her with her sleeping disorder and he's put her through surgery due to allergies before.

[o0olellyo0o.livejournal.com]

sleep apnea & car wrecks are pretty big triggers.

sleep is essential for getting better - if she isn't getting restfull sleep, her body can't heal itself.

sleep apnea is a scary thing, i mean, i take hardcore sleeping pills to help get restful sleep, but with your mom -- that could be scary because who knows if she'd stop breathing and not wake up because she's so knocked out.
that's scary. i feel for you.


have them check her hormone levels too -- those being out of wack can make one's body go crazy.

[medraxellion.livejournal.com]

My mom takes sleeping pills also actually and it worries me. But unfortunately, she can be stubborn about things like her sleep. Actually, she's just plain stubborn.

I think they've actually checked her hormone levels recently, but I don't remember what she told me. They weren't too worrisome though or else I'd remember.

I can't even imagine what it'd be like to be without sleep. I think that's why she gets sick a lot also.

[o0olellyo0o.livejournal.com]

I wish I knew what to say...
Sleep apnea makes this very hard to address. I feel for you.

& you are correct in your assumption her lack of sleep is affecting her immune system.

[medraxellion.livejournal.com]

Thanks. My mom is supposed to see a doctor sometime next week so hopefully they'll also have something good to say. In the meantime I'm trying to find out how to help my mom. Thanks for your help.

[o0olellyo0o.livejournal.com]

there are a lot of support groups. for fibro patients & ones for family of fibro.
i've never been to one, but my mother went to a family of one for awhile. she said the companionship really helped her deal.

you might want to check that out. google it for your area.

there is a fibro community here on lj, fibromyalgia but i don't like it much, its not very constructive, it's mostly just whining and pity me posts.
:\

[medraxellion.livejournal.com]

We're in the middle of a change in location so I'll probably end up checking into support groups when we've moved. As for the community.... My mom doesn't have an lj and if she did, she has a low tolerance for pity me posts. But I'll probably keep an eye on it in case it has something good.

[o0olellyo0o.livejournal.com]

that open letter kicks ass btw.

[praesentia.livejournal.com]

contact my friend teresa, she was recently diagnosed with fibro. i'm sure she could point you in a helpful direction. her lj is: rnbwconnection7

[jukebox-heroine.livejournal.com]

My friend Sharon was recently diagnosed as well. It took a while. Most doctors told her she was nuts and there was nothing wrong with her, even though she could see the nerves bunch.
She's currently in physical therapy (including Botox and cortisone shots) as well as taking Neurontin. I give her all the advice I can about Neurontin, as I've taken it for epilepsy. A lot of the same drugs are prescribed for both fibro and seizures. If they give her any, I'm happy to advise on those...

[lostmoth.livejournal.com]

I have fibromyalgia, and was diagnosed about 6 years ago. I've been through tons of meds and have finally found a few that help- ambien for sleep, wellbutrin for depression, and provigil for those really tough days when I can barely function. I work hard to get a decent amount of rest and deal with my chronic pain by either distraction (hence the mad crafting) or meds- anti-inflammatory meds like relafen or a pain med called ultram. I avoid narcs as much as I can... it's not good to get dependent on them, as I will always have pain.

With the kids, it's tough... but I think that they have come to understand that mommy paints with them, cuddles and reads to them, and that daddy is the active go to the park parent. I do what I can to keep them busy but I try very hard to not push myself and overdo it. A day of too much can set me back for a week.

I also try to exercise, as that seems to help some. Massage (not deep tissue) is very helpful as well. It's a tough way to live but it's what I've got, so I make the best of it. I think to myself, at least I can walk, I can function, and I do have a full and interesting life. Give any meds plenty of time to work and don't expect to see large changes- small ones and slowly. There was a time when I could barely function- now I'm super busy and doing really well. Honestly, sleep is my biggest enemy- if you can find a way to consistently get 8+ solid hours a night it will help a lot. Generally I get 6-7 and they are interrupted, and the ambien helps that quite a bit.

I hope that this is helpful.

[wanderyng1.livejournal.com]

das_uber is quite a sharp internal medicine doctor. In case he misses this post, I'll hit him up for some information and get back to you. He might know of some other resources in addition to what everyone else has posted.

Its Meghan (Kirks Meghan)

[(Anonymous)]

My dad has Fibromyalgia but I don't know that I can be of much help. I know they told my dad to watch his weight and try to eat as healthy as possible. They also told him to stretch everyday as he can handle. Hes honestly not doing to well with it b/c he doesn't take care of himself so I don't know how much help I can be. I know I got my dad the Fibromyalgia "book for dummies" and it had a ton of helpful suggestions to make daily life a little easier. Best wishes to her and her mother- hopefully she'll find the support she needs.