Finding Support for Fibromyalgia & Chronic Fatigue Syndrome
Does anyone in your life truly understand what you go through with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) ?
I hear all the time in the forum here how friends, family, co-workers, doctors, etc. don't really "get it," no matter how hard they may try. All too often, they don't try, which of course only creates more stress and depression - two things we could use less of, thank you very much!
Remember the phrase, "it takes one to know one"? I think that, with rare exception, it takes someone in pain to understand someone in pain; takes someone with fatigue to understand someone with fatigue; takes someone with limitations or disability to understand someone with limitations or disability.
That's one of the reasons support groups - either local or online - can really be helpful for us. I can't tell you how often a new forum member says something like, "It just helps so much to have someone understand." When you're all in the same boat, you can compare symptoms and treatments, find out that symptom X is common and you're NOT crazy after all, vent without hurting the feelings of the people closest to you, etc. They can also be an important social outlet, which is especially important if you can't get out and do much or have trouble maintaining friendships.
How can you find support groups? Here are 3 places to start:
- Find a Support Group
- Start a Support Group
- Meet a wonderful group of understanding, supportive and fun people in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum. I'm constantly amazed at what amazing people I meet there, and how much we're all able to help each other.
Comments
I have had Fibro. for 12 years now and the older I get the less the people believe that I am in this much pain. The only real help I have received is the people in this forum that really listen and know what I am talking about. I have lost contact with family members and some Friends due to the Opiate meds I take, even my only son has not talked to me in years because of my addiction. I wish some of these talk shows would bring Fibro and CFS out into the open and maybe some people would get the message
I feel for you–I think that you may want to get a second and third opinion…I was on opiates at first, but hated the way I felt. I went down different avenues; diet, yoga, acupuncture and massage. My thyroid was out of wack, too. Even short sessions in a tanning bed helps. It takes such determination to find the combination of medications and other therapies that can help. It does wound your spirit when someone says, “it can’t hurt that much!” But it does! Hang in there, and move around, gently, a little every day. It hurts worse when you don’t move.
Its sad to say but it seems our only true friends are the friends we make from forums, message boards or support groups. There may be an occasional exception, but only occasional. I was my own advocate for the first decade, I had no medical help.
It was my faith in God that carried me through. Eventually another person and I started a CFS support group. That’s when the true friendships began. That continues today ub subsequent groups.
Although I have a husband and family, they just don’t “get it.” And because our government doesn’t truly support us, our doctors still after 25 years of many opportunities to dig and get us research to help us, they chose to believe that we have primarily stress-related disorders.
This is why I push, push, push these days for the Canadian document for Physicians to be read by “us” who are able… and to provide copies to any doctor who will read them to know what we are really deal with and what is know thus far abut how to help us. Then sign the petition that Adrienne wrote about to make this document available to all through our government until they get their act together.
Nancy