O/T Fibromyalgia

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Sarah

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Location
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I know this is WAY off topic, but in thecyberworld you all are the only folks I trust (andlove! )I've just been diagnosed with fibromyalgia andI've beenlooking for a forumonline about it. It's not the end of theworld, but I would like to learn as much as I can about it, not justfrom organizations, but from people. When I google it a bunch of sitescome up, butsomehave pop-upsor theposters are justadvertising"treatments". So I waswondering if any of you have it, or know of a site that has a forum forrhumetology type disorders.
 
Thank you both SO much. I didn't know about the google thing, I'll definately steer clear. I'm going to check out the sights.

JessicaRabbit, are you a Physical Therapist? Thanks for the offer. I may take you up on it.
 
You poor dear. Such a beautiful, younglady and I can't believe you've got this going on. I hopeyou're able to get some relief.

I only have my support and concern to offer you, Sarah. I hope you'll be able to stay ahead of the pain.



-Carolyn
 
Sarah, I've hadFibro for years. There are a great many differing opinions out there onit. I'd say if JessicaRabbit treats patients on a daily basis that putsyou years ahead of people like me that have been fighting mainstreamdoctors that didn't even believe that it existed a few years ago! Itcan be an exhausting, life changing health condition. Take advantage ofher expertise! (I'm in a flare right now and might just PMgoodol' Jessica myself!)
 
Thank you all so much. I'm going to check out the links now. You're the sweetest group of people.

RaspberrySwirl, I've read about how misunderstood it used to be. Myregular doctor just said it's fibromyalgia and dismissed it. So I wentto a rheumatologist (sp?) and he put me on some muscle relaxors forbedtime. Not much seems to help. I've been missing work because of it.It's such a downer. My heart goes out to you being in a flare. I'veread that acupuncture really helps, but insurance doesn't usually coverit. I think I'll probably pm JessicaRabbit too. I hope you feel better& stay off your feet.


 
Hi Sarah!

I'm an FMSer too! If you're anything like me you're probably glad toknow what it is and that you're NOT going to die!! There were timeswhen I had my doubts ;)

The number one thing that has helped me has been yoga. I was doing itevery night before I went to bed and did it for about 6-8 months andwas pain free the entire time. I still was sensitive to touch but I candeal with that. Unfortunately I didn't stick with it like I should, andI was just starting up again and got quite sick, I've been havingstomach problems.

I've never received any medical help, just as I was first startingtreatment I got pregnant and was REALLY scared off by the Dr so I neverwent back, then I was thinking aboutgoing back, but gotpregnant again. My daughter is 3 now, so I have no good excuse.

Thanks for posting, I'll have to check out those links that others found.

Hang in there!



Megan
 
all that i-know-bigger-words-than-you mumbo jumbois confusing me...can someone plz explain to me in lamens terms whatfibromyalgia is? the only thing i got from the article is that itsarthritis...which i doubt.....
 
DreamGal042,

Definition


Fibromyalgia is a common condition characterized by widespread pain injoints, muscles, tendons, and other soft tissues. Some other problemscommonly linked with fibromyalgia include fatigue, morning stiffness,sleep problems, headaches, numbness in hands and feet, depression, andanxiety. Fibromyalgia can develop on its own, or secondary to othermusculoskeletal conditions, such as rheumatoid arthritis, or systemiclupus.

Hope the definition helped.....lol i kno the big words are confusing.

Cassandra
 
Well, many joint problems are alike, i have severe Joint Hypermobility!!!

My ligerments control my joints more than my muscles and this causes severe pain sometimes.

But there is an upside, i can bend my limbs in weird ways!!!
 
I joined thehttp://www.healingwell.com/community/?f=24forum.They seem friendly. FM can feel pretty lonely & talking withothers might help if you other FM ladies are interested. Thank youagain Carolyn for finding it. I searched, but just couldn't findanything suitable.

Megan, I've thought about trying yoga. It's weird, because when you'rein the midst of a flare exercise hurts so bad. Too much walking prettymuch put me up for 2 days. I have a few yoga videos here, so maybe Ishould do a little bit at a time. I'd love to be pain free for a while.I'm glad you mentioned your pregnancies, because I was wondering how anFM person feels during pregnancy. I'm getting married in April, sobabies have been on my mind a little. Does it make the FM worse?

 
I know what you mean, intense walking and exercise, hurts with joint complaints.

I was given some exercises by the hospital but they wern't fun or working so this is what i did:

Get a set of 1/2kg - 1.5kg Dumbells, work on you upper body.

Exercise mat, helps you upper and lower muscles and joints.

Treadmill: 10mins walk at a time helps me!!

You want to do this as with joint probs, if you sit back coz of the pain, your muscles get weaker.
 
I was actually diagnosed with fibro about 12years ago, but have actually suffered from it for closer to 34years. It was suggested that it was "just all in my head",and I "might as well get used to it".I've swallowed enough pain medication to choke a horse thru theyears. At the present time, I only take Ibuprofin, as this issupposed to help the inflammation. One thing that my doctor,now,told me was that I needed to stay active.....nomatter how much it hurt. And, as far as I am concerned, thatis very true. I went thru a stage where I just sat onmy butt because I hurt so darn bad. And I only gotworse. So, I stay very active, no matter how bad Ihurt. I've been told that the old saying, "use it or lose it"is very true with fibro. It's true with me.

- Dolores
 
Don't excerxcise beyond it hurtiing! It can make things worse.

Set an abount of sit ups, time walking etc......and build it up over time!!
 
Sarah wrote:
Megan, I've thought about trying yoga. It's weird, because when you'rein the midst of a flare exercise hurts so bad. Too much walking prettymuch put me up for 2 days. I have a few yoga videos here, so maybe Ishould do a little bit at a time. I'd love to be pain free for a while.I'm glad you mentioned your pregnancies, because I was wondering how anFM person feels during pregnancy. I'm getting married in April, sobabies have been on my mind a little. Does it make the FM worse?
Click to expand...


The thing I did when I was doing yoga was start once a week, that firstweek you'll feel miserable, so plan a day or two off and rent somemovies! After the first time aftermath you can easily do it 2-3 times aweek, and a week later you can do it every night. The only reason I didit everynight was because I would really feel it on the days I didn'tdo it. You'll be surprised how, even during a flare up, it feels goodto do the stretching.

As for pregnancy, I think I lost all the FMS symptoms and got prenancysymptoms instead. Being pregnant is painful, from stretching tendons tosciatic nerve, but for once you feel normal that you're hurting and thepains aren't as bad as a bad flare up. I actually felt much betterbeing pregnant than not being pregnant, labor wasn't any worse than ifI hadn't had FMS in my opinion. The only thing that happend was thatI'd get numbness in my hip, and we could never tell if it was FMS orthe baby putting pressure on a nerve. I've read that with FMS sometimesyou get twitches in your skin, and it's weird because ever since I hadmy son (he's 5 and a half) I've had a twitching in my abdomen thatfeels like the first kicks of a baby. I call it phantom baby ;) LOL mystomach actually physically twitches, althought it's not unusual, I gettwitching in lots of areas periodically.

Megan


 
My experience andresearch with Fibro has led me to believe that the most difficult thingabout it is the fact that it effects people so differently. In my case,I have Lupus and assume that the Fibro was a "side effect" so to speak,of the Lupus. But because I have Lupus, things that might work forothers in regard to treatment of their Fibro don't always work for me.Or don't work without much altering! Exercise being a good example.Typically water exercise is an excellent choice for suffers of Fibro. Imust severely limit my sun exposure. (even with sunscreen) Most indoorpools still have skylights which allow some sort of natural light tocome through. That natural light makes me sick. Actually my intolerancefor fluorescent lighting has gotten so bad now that I can't even gointo most office buildings or shopping centers for much longer than 20minutes. So, in my case trying to find a place with no natural lightand no fluorescent light begins to limit my options. My point being, (I do have a point) a lot of people have different circumstances thatmake treatment options that work well for one person just not an optionfor others.

Bunny_Mad, I too am Hyper-Mobile in all my joints. My Rheumatologistmeasures them each time and just shakes his head.Two of mydaughters who have Juvenile Rheumatoid Arthritisare also hispatients and are both Hyper-mobile also. It serves the cheerleaderwell!:)

Sarah, I actually feltmy best during my pregnancies, go figure!

Dolores,it sounds like you and I have something in commonwith the pain medication. If not for divine intervention, I believe Icould have becomea junkie. I tookanything I couldget my hands on to try to stop the pain. And it still didn't. Itjustmade me sleep for a little while...
 
My mom has that, she lost the use of her arms :( She had to quit work and now she's on disability...
 
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