Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
I started watching The DR's on the FOX network recently, when it occured to me, that NO show, such as this or any other talk show, ever addresses FM. Yesterday I wrote a letter to The DR's asking them if they would consider addressing this issue, as SO MANY of us suffer every single day of OUR lives with excruciating pain, and all the other symptoms that go along with FM. I will be interested to see if I even get a reply..via email...or (and I hate to say this)...but the GUTS to address this issue on their show.
I thought many times that I was alone in this FM nightmare, until joining this group. I can not tell you how this group has helped me every single day. The support of you all has made it easier to cope. BIG BIG HUGS to all of you!!..and many thanks!!!
Sincerely,
Lori
I thought many times that I was alone in this FM nightmare, until joining this group. I can not tell you how this group has helped me every single day. The support of you all has made it easier to cope. BIG BIG HUGS to all of you!!..and many thanks!!!
Sincerely,
Lori
Seems they dont want to talk about something there is no cure and they have no answers.
I too watched the Drs and thought about emailing them. Might try also,
Thanks for trying.
Hugs...Deb
Thanks again,
Lori
Lori
We all get so much support here amongst ourselves it makes me feel like we all are family...and who wouldnt want to support and care for their family?!?..
Thanks to you ALL!!
Lori
Here's the letter I just wrote to The Doctor's Show:
Hello,
I am writing to see if you could address and do a show on an awful, painstaking illness called Fibromyalgia Syndrome and living with chronic pain. 1 in 30 people (teens and men included) are afflicted with Fibromyalgia. I've suffered for 23 years and am an advocate for Fibromyalgia awareness.
We live in chronic pain 24/7 and fatigue so bad we can barely move but we try our best to work (I work part time), live and exist. We are not lazy. It doesn't kill us but it does rob us of our past, active lives. Most of us are not depressed but living in pain hurts and sometimes makes us sad. We are not drug seekers but some of us may be dependent on medications for relief from their pain. I can't take any medication/pain killers, as I am chemical intolerant. This includes medications, scented products, too strong of aromas, etc. and I break out in hives and rashes. I also am overly sensitive to light, sounds and noise.
No, pain and fatigue are not the only symptoms...there's hives, eye problems, heart palpitations, chronic bladder and yeast infections, dizziness, brain fog, allergies, TMJ, headaches, vertigo, insomnia, IBS, depression, weight gain or loss, sensitivities, anxiety, night sweats, cold extremities to name a few. Some of us have overlapping illnesses such as nerve and myofascial pain, Lupus, Chronic Fatigue Syndrome, Thyroid Disorders, undiagnosed Lyme Disease or Rheumatic Fever, Gastro Disorders, vitamin and mineral deficiencies, Cancer or other illnesses that make it even harder to get a proper diagnosis and working solutions.
The Lyrica commercials do not do this illness justice as we do not have just a little "discomfort" or tenderness. In fact this commercial has hurt our cause tremendously as most people think that we should be able to just pop a pill and all our troubles will be gone. Most do not find relief as they too are chemical intolerant or the side effects outweigh the small relief they get. From a Lyrica newsletter: Some of the most common side effects of LYRICA are dizziness, sleepiness, weight gain, muscle pain, blurred vision, dry mouth, feeling "high", swelling of hands and feet, and trouble concentrating and more.
I try and lower my fibro and myofascial pain levels by seeing a Reflexologist, learning new exercises, using heated vehicle seats and cushions, sleeping on a pillow top bed, resting when needed, take numerous supplements and vitamins as well as a nightly massage by my hubby. It's a daily struggle but what is the alternative?
Please help us by doing a show and getting the truth out there. Thank you.
There's different sections but here's where I wrote in to:
http://www.thedoctorstv.com/main/tell_us_form/153
I have a relatively young doctor who is Fibro aware. We discussed Lyrica and he told me he doesn't prescribe that as a treatment because it isn't, Bless his soul!! He's straight forward and told me there is no cure for Fibro, I told him I knew that and we discussed various options. I'm taking a handful of supplements each day and doing better. I became pro active in my own care, did research and found a regiment that is working for me. It was hit and miss for a while and is expensive but well worth the effort and money. I'm actually getting my life back. I took a list of the supplements in to my doctor on my last visit, he asked me who put me on those and I told him "I did!". He then asked me how I learned about them and I told him I did research on my own. I then asked him if any of them would cause me problems, he carefully looked over the list and told me no.
I'm sure it's difficult for any doctor to discuss Fibro since there is no cure, many don't understand the illness and some just plain don't give a rats ass.
Many people are still out there, undiagnosed, in pain, saddened by what their body is going through and feeling helpless to do anything.
I do realize that writing these people "could" open doors for us but I also know that they can "open mouth and insert foot" and set us back too.
Be pro active in your care, don't be afraid or ashamed to tell anyone you have Fibro. Help educate your family and friends and see how fast some of them begin to do research on their own.
This site has been awesome in helping me save myself. There are many, many extremely brave people here who have been instrumental in helping me and I pray I've done the same for them.
I rambled and didn't fully address your post but I think getting the word out begins with us and word of mouth.
Until the medical profession is prepared to deal with Fibro, I fear uniformed or ill informed public people could do us great harm and drastically set back any progress caring doctors have made and the end result will hurt us too.
XOXOXO
Dee
PS. I have chronic CRS so I pray this makes some sort of sense.
DDDnTN, I am so glad that your supplements are helping you. What are just some of what you take?..I take several also.
All in all, I guess I just want perhaps more research done. Something is causing this!..and if it is aired on some of these shows, where we can make more awarness of this..I am all for that.
I also wrote Oprah.
Thanks again to you all..and please...let's just give up.
Lori
Thank you CarrieinSK for posting your letter. It may help some that want to write but don't know what to write.
Hugs to everyone
Thanks so much for replying. I really hope that others write in as well. I am terrible at writing or even saying things that I am trying to getting across. However when I wrote in (2 letters now to the Dr's show and 1 to Oprah) all I did was to say whatever was in my heart. If we do get enough of us to write in, then maybe SOMEONE will get the hint that we are all crying out for help and understanding.
Thanks again,
take care... HUGS!
Lori
PLEASE DONT GIVE UP ON TRYING!...I know some others one here may not agree with not giving up, everyone has their own opinion, and what dull world it would be if everyone did agree. But really...what do we have to lose?!?..This issue MUST be addressed and just not overlooked like we all are just hypochondriacs or pill seekers! WE ALL KNOW THIS PAIN IS REAL!!...
take care and thanks,
Lori