I live in Spokane, WA and I would love to hear from anyone from my neck of the woods. It would be nice to share info regarding doctors and treatment. I have been unable to find any local support groups. I am so happy that I found this website, it is comforting to read the posts and feel the connection. It is so hard to share any fibro info with family, I know they care, but they really don't want to hear about my doctor visits or some new medication I'm trying.
I live about eight inches away from Spokane, WA...that is, according to MapQuest.com. Of course, if I get in the car and start driving, it would take me 39 hours to get there from Washington...DC. After all, it is more than 2,550 miles away.
The good news is that I and everyone else on this site are as close as your computer. You will get much sympathy from people here regarding families who just don't get it. The reality is that you have an invisible disability. Trust me, you would get more if your arm was in a sling or you had a black eye. But your pain is backwards - from the inside out. It is tough to explain because we do not know what causes it, there is no universal treatment that works for everyone and there is no cure. The best thing I have found is to tell them you have a Central Nervous System Disorder. If they ask, you can make them look a little foolish by saying "my central nervous system does not work properly - think about that."
In terms of suport groups, one thing you might want to try is to call local hospitals. Many have educational centers that hold seminars and host support groups. In the past, I've made the suggestion that a local hospital start a support group for people with chronic pain. The good news is that they do the marketing in their in-house newsletter and the one that gets mailed to patients.
Another resource in finding support groups is http://www.fmpartnership.org/resources.asp. You can enter your information and they will get back to you if they are aware of any support groups in your area. One thing, this site used to be very, very active but I have not had much interaction with them as of late. The bottom line, it can't hurt.
CantDance, welcome to the wonderful world of fibromyalgia and all that goes with it. I can't dance either (I am laughing at how unbelievably uncoordinated I was). If you have any questions or need anything, please feel free to let us know.
Marc
Hi CantDance. I live just east of Portland, about 20 miles. Really pretty close, but not close enough. The one thing I can offer is that there is a Fibromyalgia clinic at Oregon Health Sciences University in Portland. Some people travel far and wide to go there. I spoke to people visiting from out of state to be seen there. I've been there twice and it's where I got my "real" fm diagnosis. I chose to go to other doctors that I've found for my regular care.
Have you found a rheumatologist yet? Probably your first priority? One thing I've found by reading the posts from others is that we all seem to have a different pattern of finding what we need. Not by choice. Mostly by frantically trying to find whatever provider we need at the time. Sometimes we end up not getting answers from the first one and go on to another. Hopefully, others will reply and recommend more to you.
I have found this website to be very helpful in searching. ucomparehealthcare.com/drs
http://www.ucomparehealthcare.com/drs/report2.html?L=49456265230000...
Also here is the link to OHSU website.
http://www.ohsu.edu/xd/health/services/clinics/Fibromyalgia.cfm
I'm going to send you a friend request. Maybe we can share some more information.
Hugs and prayers,
L-Kitty
Thank you for the warm welcome. My name should read : Cantdance-NeverCould, but that name is to long. I like your sense of humor. I'll look into the local hospitals (we only have 4 within 10 mi radius) for the group info. I;ve been watching the paper, but so far, i've only seen childbirth type groups advertised.
Hello L-Kitty,
My real name is Dawn and my screen name is true, I really can't dance, never could. Thank you for the welcome and FM info. You are right about Portland not being that far from Spokane. My grandson, mother and I vacationed in the Mt Hood area last August. It is so pretty there. We went to the Zoo and toured the Timberline Lodge, had a great time.
I have a rheumatologist and was really lucky that my primary doctor referred me. I've read some horror stories from patients that got the run around and still don't have a specialist to manage their care. The problem that I have is, there are to many drug addicts in this country trying to score drugs, that doctors don't want to prescribe pain meds for people like us. Doctors are forced (new laws) to send us to a pain management specialist where they want to teach us how to meditate and breath thru the pain. Makes me angry, I'm not a drug seeker, but if you ask your doctor for anything other than Tramadol, then they look at you like you just might be one. I find that massage helps. I was going to water aerobics at the YMCA, but the water temp was always to cold for my FM and it aggravated my symptoms. I'm going to try gentle beginners Tai Chi on dvd and see how I like it. I like to listen to contemporary christian radio (104.9 Positive Life Radio) to keep my mind/body/soul at peace.
What do you do to cope?