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Anyone with Fybromyalgia? Anyone with Fybromyalgia?

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  #1  
Unread 08-14-2004, 12:26 AM
Anyone with Fybromyalgia?

Wondering how you are dealing with the pain, how your family/coworkers deal with it as well. Do they understand? What meds are you taking for the pain?

I have tried all the pricey meds and have found that cutting back in my work hours has helped along with taking Tylenol Arthritis. Talked to the RPH at work andshe said that it must have something in it I am responding to that the other meds didn't. I remember before I had my hours cut at work, how terribly sick I was, unable to do anything except sleep to avoid the pain. I feel like I am among the living again though at this point. As for how long, I have no idea. I will enjoy it for as long as I am able.

DH does pretty well with the pain I have. The flares are terrible though. Pain like I have never known. My coworkers? Now they are good about it but they weren't in the beginning. Since I cut my hours per Dr.'s orders, it is more of a reality to them. I think they thought I was faking it at first. My parents are good about it as well, but only after I emailed them info about it. They just were unable to grasp my plight. Seems like when I descibe the feelings of the aches like the ones a person has during the flu, people understand pretty well, as I can imagine their mind floating back to the last time they had the flu.

I would be interested in hearing from others about your experiences.
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  #2  
Unread 08-14-2004, 08:43 AM
Anyone with Fybromyalgia?

I hope you don't mind if I ask, but what is fibromylgia? My neighbor had it (she moved back to England) and used to tell me that I had it too.

Her DR told her to take glycosamine (hope I spelled that right) and she said that it helped. She also went swimming every morning and said that also helped.

I really think that I have it. I just over do it in the garden.

Would you mind explaining what it is?

Thanks, Punky
  #3  
Unread 08-14-2004, 08:47 AM
oops!

I mean I really DON'T think I have it.
Punky
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  #4  
Unread 08-14-2004, 03:34 PM
Anyone with Fybromyalgia?

Hi (((Chris)))! I've moved your thread over here to the Road Less Traveled forum, where there are some members with first hand experience with fibromyalgia.

There are also some great links to helpful information about fibromyalgia (also called FMS) over in our Resource Links directory, in the Road Less Traveled-Autoimmune Disorders section:

https://www.hystersisters.com/vb2/lin...=browse&cid=31

I hope this helps!
s,
-Linda
  #5  
Unread 08-16-2004, 09:48 AM
Anyone with Fybromyalgia?

Dear LadyFirewalker (cool name!)
I have FMS and Rheumatoid too! lucky me.
For about 12 years now.

I had an rx for Darvocet from Rdr., but last visit i told him it just wasn't working. he gave me the "Large economy size" bottle, for which i was grateful. My GP just gave me an Rx for Lortab, which i have yet to take. I know all the principles of taking opioids for pain management, but I still "save" my strong pain pills for a really bad day. i know that's crazy.

i have a vibrating massage mat (Homedics brand) that when i am really destroyed, i lay on that, full body masssage turned on high, and put on relaxing music and take a pain pill.

Going down to the fitness center to use the hot tub really feels good, too.

I use a cylinder pillow at the end of the bed under the sheets to keep the covers off my feet. it hurts to have the pressure of the blankets.

There is also a supplemnt called Fibralgia. Supposedly research indicates that malic acid and magnesium reduces the pain some, but i am not consisten in taking it. You can read about it on the internet.

I sure do understand!!!!

Fluffy (ouchy) Lemur
  #6  
Unread 08-16-2004, 12:14 PM
Flare

This is my first post re: my fibro -- it seems that I have so many things wrong with me that I hate to mention this one. I have recently had a "flare" after my TAH, etc. I am diabetic (having trouble controlling bg's after my surgery about 12 weeks ago), high blood pressure (had a stroke 2 yrs. ago), high cholesterol (quit taking Lipitor because of evidence of muscle damage), hyperthyroid (on propylthiouricil (sp?), dental problems, eye problems (5 recent eye surgeries), and now I'm on hormones. I think that's enough for this old girl.

A couple of weeks ago I mentioned my fibro pain again to my gyno, and he advised me to go to a dr. specializing in acupuncture and massage. I haven't followed through yet since I'm dealing with other more pressing issues.

Anyway, thanks for the idea about Tylenol Arthritis. I may give it a try. I've also tried about all pain medications. The pain was so bad over the weekend that I dug into my emergency stash of Percocet and took one just in order to function. I don't have many left, and I serioiusly doubt that my dr. will give me more.

Any more ideas about pain management will be appreciated.
thanks for reading!

On the bright side, it is an absolutely beautiful day here in Indiana!
BeeCharmer
  #7  
Unread 08-16-2004, 12:41 PM
Anyone with Fybromyalgia?

Lady!

I, too, am a FMS sufferer. I was diagnosed by a Rhuemy about 2 years ago, but think it had been going on for quite some time beforehand. He referred me to a Physiatrist and I will finally have my first appointment with her (long story on the 2 year lapse) on September 7th.

As far as pain meds are concerned, that has been quite an ordeal as has my search for a GP that thouroughly understands this monster. My best luck has been staying on steady dose of the muscle relaxer called Soma. But, I do have flares and breakthrough pain that nothing seems to touch. Right now I've had some major female/hormone issues that has really sent my body into chaos.

My family does their best to understand and I think they are getting to where they know there are just some days and some things I simply can't do. My co-workers don't get it. It isn't visible so, it must not be real. I just have to deal with them the best way I know how.

It is frustrating, that much is for sure. It is nice to have the ladies here that understand. Feel free to e-mail or pm me if you'd like to talk more.

s!
  #8  
Unread 08-16-2004, 12:53 PM
Anyone with Fybromyalgia?

If you go to the Arthritis Foundation website <admin. note: here is the link from our Resources directory: https://www.hystersisters.com/vb2/lin...n=jump&lid=506 >

they have alot of articles about this. also you can find lots of stuff on Fibromyalgia on Webmd etc etc

It's very individual as to what works. i have even heard of someone who invented a Fibromyalgia diet, that supposedly reduces the inflammation by eliminating whatever toxin is causing the flares. I like food too much to do that!

The standard approach for FMS is ensure good restorative sleep, gentle exercise, rest enough but not too much. It's hard to find the right combination of things that works, because everyone is different. It's good if you can find a dr experienced working with it and sympathetic to the ordeal of living with FMS.

Fluffy Lemur
  #9  
Unread 08-17-2004, 04:56 PM
Anyone with Fybromyalgia?

I have been dealing with, to this date, undiagnosed "arthritic pain" for the past 2 years. More and more, it's starting to sound like I may be dealing with FMS

While, currently, the flares are under control, there was a time when even while taking Mobicox I was still having unbearable breakthrough pain!!! At that time, my doctor prescribed Celebrex and it was like a miracle: not only did it do away with the breakthrough pain, it also did away with the awful zombie feeling I had with the other meds. Lately, Tylenol Arthritis has been extremely helpful... much more so than ASA or Ibuprofen based OTC meds.

One thing I've noticed is that, when I'm not in the middle of a flair, gentle exercises do help, a lot. If I walk, bike or do my PACE work-out I am more likely to avoid a flare-up, even in damp weather. The worst "activity" in sitting: after a while, it will do a number on my knees and hips and might, eventually, result in what I call "mini flares". Those would be times when the pain gets really bad, but where I can, successfully, manage the pain within a few hours.
  #10  
Unread 08-17-2004, 05:18 PM
Anyone with Fybromyalgia?

Wow........I'm sorry but at least I am in good company with this and with those who certainly understand. It seems as though if your insides aren't hanging out, no one understands as the pain is not noticable really. Some people have to "see" the pain before they believe you are hurting. My dad told me it was all in my head which was very demoralizing to me. I used to think FMS was a mental thing until I started talking to people and learning about it. I am also more understanding to those who hurt, even more than I was in the past.

One thing I started to do was keep an online journal. I can cry, scream and cuss and no one will read it except for me.

I had a flare on Sunday and was in tears when I called in to work. I felt like I had been beat up and all I did was sleep all day. I am presently trying to discover what sets off my flares and I think one thing is the work I do. I do alot of heavy lifting and I need to take it as easy as I can with that. I also went to a wedding on Saurday which made everything worse. The wedding was by the river and it was very cool that day. I sat chilled to the bone and really paid for it on Sunday. FMS gets to be a game of sorts and not a very fun one.

Any more war stories on this subject???
Please share, you never know what you have to offer might help the rest of us.
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