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View Full Version : So apparently it's 'just fibromyalgia'



Fenika
02-26-2009, 09:26 PM
but maybe with a side of dysautonomia to really mess me up.

Well, at least I have a diagnosis, such that it is. The meds have gotten the abdominal pain under control, which is nice. I even ate some 'normal people food' and only got a little backlash, relatively. Now if I could just sleep 8 hours. And cure fibromyalgia.

And um, I gotta decide if I'm going back to school. Urgh.

So, we got a fibromyalgia support group around here?

That's all for now
Cheers

Wayne K
02-26-2009, 09:35 PM
I don't know the whole story, but I've always found doing something when I'm going through something painful is a good distraction. If you're able, I would suggest going to school.

rhymegirl
02-26-2009, 09:41 PM
Sorry you've been sick. I've had something, too, and still don't know what it is.

For a distraction, gaze at Wayne's avatar as much as possible. :)

Fenika
02-26-2009, 09:51 PM
Oh, RG's advice is so much easier than Wayne's.

*stares*

;)

Wayne K
02-26-2009, 09:51 PM
I'll fight you for him!

Fenika
02-26-2009, 09:54 PM
You would hit a poor sick girl? Meanie :tongue

Stew21
02-26-2009, 09:58 PM
My mother has a very good friend with Fibromyalgia. They have really come a long way in treating the pain, but it takes a while to tweak the meds to the right dose, but she really has improved a great deal and her quality of life has gone up a great deal recently.

stormie
02-26-2009, 10:10 PM
*Raises hand* Me! Unfortunately. It was so bad when I first had it (I was about 35) that my hands turned into claws and I couldn't even walk. It might have come from a spider bite (I remember cleaning near the ceilings of my house and immediately getting a huge oval rash. Not lymes disease rash). Or something from the pool at our beach where ocean water is piped in but rarely cleaned.

What worked--Elavil. The dr. now has it up it to 25 mg. per day. I can now sleep through the night; my legs and arms aren't painful as much anymore. I have to take it at night or I'll be sleepy during the day.

rhymegirl
02-26-2009, 10:11 PM
I'll fight you for him!

You're a man lover???

Wayne K
02-26-2009, 10:43 PM
You're a man lover???
I'm married but I'm not opposed to beauty, male or female.

Wayne K
02-26-2009, 10:45 PM
You would hit a poor sick girl? Meanie :tongue
You'll get better and then we'll play a round of Jeopardy for him.

Namatu
02-26-2009, 11:02 PM
What worked--Elavil.I was on Elavil for awhile, and then Flexeril. Mine is a fibromyalgia-like pain, but I know generally what brings it on and how to reset things. (That may not make a lot of sense, but I won't highjack your thread with a long explanation!)

You might want to check out some gentle yoga. Most yoga studios heat the rooms, and I found heat always made me feel better. Yoga breathing can help you cope with the pain. It promotes deeper breathing, using greater lung capacity. A common response to pain is shorter breaths, part of the fight or flight response, but it's obviously not a good idea to maintain shorter breaths with fibromyalgia pain. Yoga also often eased my pain, for that hour of class, sometimes for some time afterward. It may take you a bit to figure out where you're at and how much is too much though so I would recommend going slowly, and letting the instructor know you have a condition and want to begin with modifications where possible (every pose can be modified in numerous ways).

Acupuncture might be helpful.

:Hug2:

Beach Bunny
02-26-2009, 11:09 PM
:Hug2: Now you know what the problem is you do what you can to solve it. :Hug2:

Here's a link to WebMD: http://www.webmd.com/fibromyalgia/guide/fibromyalgia-overview-facts

I like RG's idea to stare at Wayne's avi. It helps release endorphins. :)

illiterwrite
02-26-2009, 11:11 PM
Poor you. :(

My mom had it. She says it disappeared after menopause, which I guess can happen to a lucky few.

GeorgeK
02-26-2009, 11:22 PM
So, we got a fibromyalgia support group around here?

That's all for now
Cheers

I've got neuropathy pain (neuralgia) and muscle wasting from both large and small fiber disease. They don't know why. It is vaguely similar to fibromyalgia, lymes neuropathy, ALS and a couple others but not classic for any of them. Lyrica was a godsend, at least until I became allergic to it. Toradol was ok, but my kidneys don't like it. Ultram was better than nothing, but my liver doesn't like it. Narcotics were worse than worthless, lot's of side effects without benefit. I truly wish you well. I also recommend a hot tub.

Uncarved
02-26-2009, 11:44 PM
*Raises hand* Me! Unfortunately. It was so bad when I first had it (I was about 35) that my hands turned into claws and I couldn't even walk. It might have come from a spider bite (I remember cleaning near the ceilings of my house and immediately getting a huge oval rash. Not lymes disease rash). Or something from the pool at our beach where ocean water is piped in but rarely cleaned.

What worked--Elavil. The dr. now has it up it to 25 mg. per day. I can now sleep through the night; my legs and arms aren't painful as much anymore. I have to take it at night or I'll be sleepy during the day.

I concur, I've been diagnosed with Fibro and they left me with my Elavil 25 mg at night prescript I've been taking for my Interstitial cystitis. I've took it for years and found its my one magic bullet

Fenika
02-26-2009, 11:45 PM
You'll get better and then we'll play a round of Jeopardy for him.

Deal. And you're going down ;)


*Raises hand* Me! Unfortunately. It was so bad when I first had it (I was about 35) that my hands turned into claws and I couldn't even walk. <snip>

Owie. Glad you are doing better. They switched me to a less drowsy drug today to see how that goes. And my chiropractor told me to read more--no problem there ;)


<snip>

You might want to check out some gentle yoga. Most yoga studios heat the rooms, and I found heat always made me feel better. Yoga breathing can help you cope with the pain. It promotes deeper breathing, using greater lung capacity. A common response to pain is shorter breaths, part of the fight or flight response, but it's obviously not a good idea to maintain shorter breaths with fibromyalgia pain. Yoga also often eased my pain, for that hour of class, sometimes for some time afterward. It may take you a bit to figure out where you're at and how much is too much though so I would recommend going slowly, and letting the instructor know you have a condition and want to begin with modifications where possible (every pose can be modified in numerous ways).

Acupuncture might be helpful.

:Hug2:

I've started on (and overdid) the yoga (again, used to do it regularly). Am thinking about acupuncture, and have noticed the breathing thing (months ago I would clamp my jaw and stop breathing subconsciously due to the pain!!!)


I've got neuropathy pain (neuralgia) and muscle wasting from both large and small fiber disease. They don't know why. It is vaguely similar to fibromyalgia, lymes neuropathy, ALS and a couple others but not classic for any of them. Lyrica was a godsend, at least until I became allergic to it. Toradol was ok, but my kidneys don't like it. Ultram was better than nothing, but my liver doesn't like it. Narcotics were worse than worthless, lot's of side effects without benefit. I truly wish you well. I also recommend a hot tub.

I'd love a hot tub.

Thank you to everyone else who responded. There seem to be a lot of us affected. Maybe a support group thread in Conquering Challenges is in order.

Wayne K
02-26-2009, 11:49 PM
I do Hatha yoga. It's less strainful and very low impact. I don't go to classes anymore, but I do it at home when I have ten seconds alone. The cat thinks I'm doing cat stretches and jumps on me.

Fenika
02-26-2009, 11:53 PM
Any Hatha DVDs you'd recommend?

And I could use a cat too, but the pet birds don't need the health risk.

Namatu
02-26-2009, 11:57 PM
I've started on (and overdid) the yoga (again, used to do it regularly). Am thinking about acupuncture, and have noticed the breathing thing (months ago I would clamp my jaw and stop breathing subconsciously due to the pain!!!)I see a Muscle Activiation Techniques (MAT) specialist. I have absolutely no idea if it would help for fibromyalgia. It looks for imbalances in the body (muscle, structure) and rebalances, and I'm given isometric exercises to reinforce the adjustments. Over the past few years with MAT, I went from constant pain to feeling mostly "normal" 90 percent of the time. Specialists are listed here: http://www.muscleactivation.com.


I'd love a hot tub.In lieu of hot tub, try hot bath or shower. That hot water tank can never hold enough for me!

Namatu
02-27-2009, 12:03 AM
Any Hatha DVDs you'd recommend?This is a yoga CD. http://www.amazon.com/Drops-Nectar-Shiva-Rea/dp/1591790522/ref=sr_1_8?ie=UTF8&s=music&qid=1235678409&sr=1-8
I have not yet bought/tried it, but I have another of Shiva Rea's CDs and it's great. This one I keep wanting to try, and the title sounds appropriate. Hm, maybe I should buy it and try it for you...

Neurotic
02-27-2009, 12:07 AM
Sorry about what it is, Brat, but at least you've finally got your for-sure diagnosis. :Hug2:

Wayne K
02-27-2009, 12:09 AM
I forget the author, but I remember it was a 28 day yoga book with very good illustrations. Hittleman actually. He has CDs and dvds too. Google him.

Namatu
02-27-2009, 12:16 AM
The reviews for this video say it's good for fibro: http://www.amazon.com/Yoga-for-Healing/dp/B000FBP0CW/ref=sr_1_1?ie=UTF8&s=dvd&qid=1235678688&sr=8-1

rhymegirl
02-27-2009, 12:26 AM
I'm married but I'm not opposed to beauty, male or female.

Fair enough. But which one of the following appeals to you MORE:

This one
http://i77.photobucket.com/albums/j80/rhymegirl/russcrowe.jpg

Or this one
http://i77.photobucket.com/albums/j80/rhymegirl/kzj.jpg

Wayne K
02-27-2009, 12:39 AM
Can she cook?

jennontheisland
02-27-2009, 12:41 AM
I'm glad you've finally got a name for it Baha.

rhymegirl
02-27-2009, 12:44 AM
Can she cook?

Well, that's Catherine Zeta Jones. She probably has people who cook for her.

Wayne K
02-27-2009, 12:48 AM
Well, that's Catherine Zeta Jones. She probably has people who cook for her.
Her mother cooked up a nice dish huh?

LaurieD
02-27-2009, 12:58 AM
I use a pretty easy yoga DVD - Yoga for Beginners - available at Target (store and online) for about $15. I have a different autoimmune disease but it helps enormously - stress and physical inactivity can make any autoimmune disease symptoms worse

stormie
02-27-2009, 01:29 AM
They switched me to a less drowsy drug today to see how that goes. And my chiropractor told me to read more--no problem there ;)
I had to back up on this one. Your chiropractor told you to read more? Did he mean read up on fibro or just read? And what would just reading do to help? (Please forgive me. I'm having a dumb brown-haired moment and most likely am not thinking clearly. Or can I blame the fibro?!)

Old Hack
02-27-2009, 01:43 AM
I take imipramine for my fibromyalgia (10-20mg each night, an hour or so before bedtime): it helps with my RSI and Reynauds a little, too, and has a nice little side effect that I lose weight whenever I take it. But it does dull things a little, and I find it difficult to write interesting fiction while I'm on it: so I don't take it all the time, and go back to it only when I really need to.

It's important to keep excersising at a light level: you don't want to wear yourself out but moving keeps the pain level lower if you can manage it. Walking's good for me (the Reynaud's rules out swimming), but you'll find your own way.

thethinker42
02-27-2009, 02:09 AM
So, we got a fibromyalgia support group around here?

That's all for now
Cheers

Yikes...what fun. I *had* fibromyalgia for over a decade. MISERABLE. Then I started seeing an acupuncturist for something else, and my symptoms went away. I haven't had any problems for the last 2 years or so. If you can afford it, I *highly* recommend talking to an acupuncturist...they take a very different approach to treating fibro, and I found it to be quite effective.

Good luck.

Ambrosia
02-27-2009, 02:11 AM
but maybe with a side of dysautonomia to really mess me up.

Well, at least I have a diagnosis, such that it is. The meds have gotten the abdominal pain under control, which is nice. I even ate some 'normal people food' and only got a little backlash, relatively. Now if I could just sleep 8 hours. And cure fibromyalgia.

And um, I gotta decide if I'm going back to school. Urgh.

So, we got a fibromyalgia support group around here?

That's all for now
Cheers
There is no such thing as 'just' fibromyalgia. It is a horribly painful condition that people who do not have it can not comprehend. I am sorry to hear you have it. I have had CFIDS & Fibro since the 1980's. It is not a fun way to live.

The following link is to a site that sells supplements and other things to help patients who have CFIDS or/and Fibromyalgia. I don't buy much from them due to finances but the articles they have on the site from leading researchers and drs in this field are outstanding. I highly recommend the site for its articles and information. http://www.prohealth.com/

I haven't found anything drug-wise that helps me with the pain, other than motrin to dull it when it gets really bad. Something heavier duty might work for a bit, but my dr insists in the long run it would be bad for my body and would cause other problems. I just accept the pain and go on. I have tried aquatherapy and it is awesome. The warm water of the pool really helps. Unfortunately I haven't been able to go for a few months. But I highly recommend it. It makes a huge difference in pain levels.

Namatu
02-27-2009, 03:03 AM
There is no such thing as 'just' fibromyalgia. It is a horribly painful condition that people who do not have it can not comprehend.QFT.


I just accept the pain and go on.It's both impressive and scary that the mind and body allow this. We possess greater strength than we can imagine.

Fenika
02-27-2009, 04:01 AM
Thanks folks.

I've gotten into a lot of arguments with my mom over this invisible pain. She keeps insisting I suck it up and go to school/work. I'll spare you further details.



In lieu of hot tub, try hot bath or shower. That hot water tank can never hold enough for me!

I take hot showers, even in the summer when I'm dripping in sweat. Good stuff.


This is a yoga CD. http://www.amazon.com/Drops-Nectar-Shiva-Rea/dp/1591790522/ref=sr_1_8?ie=UTF8&s=music&qid=1235678409&sr=1-8
I have not yet bought/tried it, but I have another of Shiva Rea's CDs and it's great. This one I keep wanting to try, and the title sounds appropriate. Hm, maybe I should buy it and try it for you...

Noted, and let me know if you do :D


I had to back up on this one. Your chiropractor told you to read more? Did he mean read up on fibro or just read? And what would just reading do to help? (Please forgive me. I'm having a dumb brown-haired moment and most likely am not thinking clearly. Or can I blame the fibro?!)

Okay, let me try to explain this without botching it up. Fibromyalgia is a neuro issue causing muscle and GI and other issues. There's problems in the right half of the brain (the emotional half, so to speak). So it's good to exercise that part of the brain and work on the synapses between the brain hemis. So, reading non'picture' books (no people's mag for ex) is one of my tasks. Along with doing math while driving (hello license plates and addresses), and listening to music in the right ear only. (speaking of, *grabs earphones*). I have a sheet on this if you want more info.

Cheers

stormie
02-27-2009, 04:11 AM
Okay, let me try to explain this without botching it up. Fibromyalgia is a neuro issue causing muscle and GI and other issues. There's problems in the right half of the brain (the emotional half, so to speak). So it's good to exercise that part of the brain and work on the synapses between the brain hemis. So, reading non'picture' books (no people's mag for ex) is one of my tasks. Along with doing math while driving (hello license plates and addresses), and listening to music in the right ear only. (speaking of, *grabs earphones*). I have a sheet on this if you want more info.

Cheers
Oh, good! Reading books--no problem there. I read every day for at least an hour. I only read mags when in a doctor's office. Forget math. Drives me nuts. Listening to music in the right ear only--yep, I can do that. Good plan.

TheIT
02-27-2009, 04:22 AM
Glad to hear you finally have a diagnosis, Bahamutchild, and good luck on finding an effective treatment.

Question: right ear only? I might be wrong, but I thought senses like vision were processed in the opposite hemisphere. Is hearing different?

Ambrosia
02-27-2009, 05:05 AM
Thanks folks.

I've gotten into a lot of arguments with my mom over this invisible pain. She keeps insisting I suck it up and go to school/work. I'll spare you further details.Many people who have fibro go onto disability because they can not hold down a job. It depends on the severity. Whatever the severity, you will need to learn to modify your life according to how you are doing on that day. Have your mom read about it. It won't help her understand your pain, but may help keep her off your back about what you can not control. This isn't a case of just tough it through and you will feel better in the morning. Pushing yourself too hard will cause more pain that lasts and lasts. Learn to pace yourself. Heck, if you can afford it go for the accupuncture. I have heard others say it really works.


Okay, let me try to explain this without botching it up. Fibromyalgia is a neuro issue causing muscle and GI and other issues. There's problems in the right half of the brain (the emotional half, so to speak). So it's good to exercise that part of the brain and work on the synapses between the brain hemis. So, reading non'picture' books (no people's mag for ex) is one of my tasks. Along with doing math while driving (hello license plates and addresses), and listening to music in the right ear only. (speaking of, *grabs earphones*). I have a sheet on this if you want more info.

Cheers
No one knows what causes Fibromyalgia, or exactly all the components at work. Yes, please read all you can on the condition. It sounds like your chiropractor has latched onto one theory to the exclusion of all other possibilites. It also doesn't sound right from what I know from experience. Study what you can find out there from reputable sources. Knowledge is your best friend with this disease.

Good luck.

Fenika
02-27-2009, 05:13 AM
Oh, good! Reading books--no problem there. I read every day for at least an hour. I only read mags when in a doctor's office. Forget math. Drives me nuts. Listening to music in the right ear only--yep, I can do that. Good plan.

My reading is too sporadic. I need a program like you've got :) And it can be basic math- memorize as many digits as you can and add them up. Don't have to ofc, but if you are weak here it's a good plan :)


Glad to hear you finally have a diagnosis, Bahamutchild, and good luck on finding an effective treatment.

Question: right ear only? I might be wrong, but I thought senses like vision were processed in the opposite hemisphere. Is hearing different?

Hearing crosses into both sides of the brain. I tried to look up if it was equal or not, but couldn't find it. Vision also is on both sides, but unequally (a majority of the info crosses over). Feel is both sides, motor control crosses.



It sounds like your chiropractor has latched onto one theory to the exclusion of all other possibilites.

Nah, that's just forum chat bias. She also told me about the current research on sleep, growth hormone, and so on. She's on top of her game, so I heart her. Doesn't mean the theory is right or wrong, but it certainly gives me something to do and work towards.

Cheers again folks

Susie
02-27-2009, 05:19 AM
So hope you feel better soon. ((((((HUGS)))))) and prayers to you.

Namatu
02-27-2009, 06:03 AM
I've gotten into a lot of arguments with my mom over this invisible pain. She keeps insisting I suck it up and go to school/work. I'll spare you further details.Maybe give her a copy of the Spoon Theory. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Fenika
02-27-2009, 07:22 AM
Strategizing a war the link says. So true.

Lyra Jean
02-27-2009, 09:45 AM
Here's a hot tub:
http://www.cedartubs.com/Hot%20Tub%20003.jpg

and Russell Crowe
http://www.moviedownfree.com/picz/col_russell_crowe_filmography.jpg

I hope you get a plan of attack soon.

thethinker42
02-27-2009, 09:53 AM
Hot tub? Russell Crowe??

Hmm, I feel my fibromyalgia symptoms returning. *runs to doctor for Crowe-tub prescription*

Cassiopeia
02-27-2009, 09:58 AM
Stress can trigger fibromyalgia. Make sure if you go back to school to take it easy.

Fenika
02-27-2009, 04:53 PM
*sits in hot tub and requests massage exchange with Russell*

Ahh.

And there's no such thing as taking it easy in clinics, urgh. I think I'm going to have to be treated as if I can do nothing physical if I'm to survive. Otherwise I'll be doing more and more until they break me. *sigh*

backslashbaby
02-27-2009, 05:15 PM
(((hugs)))

I have a nerve disease/chronic pain condition (for years now), but I don't look sick. You know how that goes, looks like!

Quickly get over any guilt about what you can't (or shouldn't do) is my best advice. Just say Screw 'Em. It's bad enough that you can't do what you want to, without all the inevitable BS from folks!

It took years of struggling with the guilt before I finally said screw them, so please don't you linger about it ;) You know you're not weak or lazy.

(I know folks may mean well and all that. But there's a fair amount of Screw Them that is therapeutic, I think!)

Wayne K
02-27-2009, 05:53 PM
http://www.moviedownfree.com/picz/col_russell_crowe_filmography.jpg

.
Why can't he be the guy who gets drunk and hits on me?

Fenika
02-27-2009, 06:36 PM
Thanks backslash

And I have no answers for you Wayne. But you might lose the ring next time you enter a gay bar :D

euclid
02-27-2009, 06:44 PM
I could use a cat too, but the pet birds don't need the health risk.

Especially that nasty parrot with the burnt out cage.

Sorry to hear you're not well. What are the symptoms of Fibro-whatnot? NO, don't tell me. I'm a total hypochondriac. Any list of symptoms and I catch the disease right away!

PS Didn't someone say Kurt Russell is very sick?

euclid
02-27-2009, 06:50 PM
Sorry, I think I got my Russells mixed up.

That's Russell Crowe, right, not Kurt Russell. But which one of them is ill?

It's been one of those weeks.

brad_b
02-27-2009, 08:47 PM
I can relate to fibromyalgia. About 8 years ago or so, I started having weird symptoms like going into shock at the intake of the least bit of sugar. I won't go into all the details but it was weird and scary. My doctor finally, after rounds of tests and her telling me she couldn't find anything wrong, came up with Chronic Fatigue Syndrome... another one of those 'invisible' ailments. I was bed-ridden for 6 months and life was the pits.

My mom finally talked me into seeing her chiropractor, he took X-rays, and linked the onset of the CFS to an accident I had several years earlier. I was rear-ended at a stop light and the whiplash had finally started pinching nerves in my neck; his adjustments started me back on the road to recovery. It was a slow process but finally the symptoms have all but disappeared and I'm back to as normal (or abnormal) as I was before the CFS showed up.

Diet helped some and exercise also helped to overcome the sleeplessness that comes with CFS. I guess what I'm trying to say is fibromyalgia and CFS are related. The doctors still can't explain it fully, other than there might be some kind of virus or something in all of us that kicks in after a trauma. In my case and after a lot of research, it seems the immune system kicks on and doesn't shut down thus sapping energy. That might explain why I rarely ever get sick but I'm almost back to 100%. Hang in there and do what you can, keep healthy in diet and exercise, and help your body repair itself. I'm praying that soon you'll notice the symptoms going away as happened in my case.

Wayne K
02-27-2009, 09:10 PM
Thanks backslash

And I have no answers for you Wayne. But you might lose the ring next time you enter a gay bar :D
I only go to Irish bars, but there's only one difference between gay bars and Irish bars. In gay bars the homosexuals get drunk, and in Irish bars the drunks get homosexual.:Hug2:

Fenika
02-27-2009, 09:51 PM
Cheers Euclid. I hear reading these types of threads causes firebirdmalariosis, in which a firebird shows up at your home and demands residence. Be careful.

That sounds rough, Brad, but I'm glad you are doing better. Who else would storm the castles for us? :)

Wayne: :ROFL: Cheers

Fenika
02-27-2009, 10:02 PM
Hm. It's 1pm. Maybe I should call the vet school and have a chat.

Also- My Algia Support Thread (http://absolutewrite.com/forums/showthread.php?t=133144) (heh, get it?)

GeorgeK
02-27-2009, 10:15 PM
Irish bars

When I was a kid, we had this Irish folk singer come to our school and someone asked him what they do for fun in Ireland. He said, "We like to sit around in pubs and drink and talk about what we would do if we didn't sit around in pubs and drink."

Oh Yeah Bahamutchild, try to avoid aspartame. Some people seem to metabolize it into a pain neurotransmitter. Sucralose doesn't get metabolized the same way, so it seems to be ok.

Eating hot peppers help me a littlefor about a half hour, but topical capsaicin doesn't.

eyeblink
02-27-2009, 10:32 PM
Sorry to hear that, Baha. Nothing I can suggest as my knowledge of this subject is zilch. but <hugs> and <good vibes> all the same.

Fenika
02-28-2009, 04:57 AM
Urgh, I learned about aspartame real fast after just one cup of tea. I don't touch fake sugar. Ever. *shudders* But thanks for the explanation. Good to know :)

Cheers Eye.

I'm still hurting in the shoulders but not enough to keep me from doing some gentle yoga this evening.

kristin724
02-28-2009, 09:56 AM
I hear you! I have Lyme Disease. Not fun at all, and now I'm getting tested for MS. Also not fun. All the flu stylings and chronic fatigue and arthritis and pains comes along with those. I'm good for the moment, after waking up at 5 *pm*!

Fenika
02-28-2009, 09:44 PM
I hope you don't have MS Kristin. I wish I could sleep in that late :)

Personally, I think they need to do more research on all this stuff. Immediately.