From the article: Find a Support Group for Fibromyalgia or Chronic Fatigue Syndrome
Support can be an important part of living with a chronic illness. Share your tips for finding a local chronic fatigue syndrome or fibromyalgia support group or starting a new support group. Also, what has your involvement in support groups, online or in your community, meant to you? Share Your Experience
:-(
- I am a dancer and although i haven't had a check up all the symptoms match mine and i know its fibrmyalgia. The pain is unbearable and so is the dizziness. I'm scared that i'll have to leave dancing. P.s: it all happened suddenly. One day i was performing on the stage and the next day I was bed ridden. :-(
- —Guest sue
Support
- I wish there was a way to show people just for a few hours what it feels like. I just found out my mother doesn't believe I am as sick as I say I am. What a punch in the stomach.
- —Guest Pam
What Support?!!!
- I find my support in places like this. My parents are dead. (I'm 62). Have no aunts, uncles or close relation to speak of. My in-laws treat my relentless Fibro. & CFS as if I were JOKING ABOUT IT! I've been married to their, equally, isipid & unfeeling only son for over 26 yrs.now. In the 12+ yrs. that I've been diagnosed my husband has hit me, & verbally abused me where the Fibro. (& anything else) is concerned. I don't have the strength to go many places with him. And, even if I did...we'd just argue. We haven't been a "Married couple" in over 11 yrs. It used to tear me apart that he no longer desired me. Now, I just hate him. My sister-in-law also makes a big joke out of my pain, insomnia & having to walk with canes,walkers,etc. And to top it off, last yr. I fell & broke my leg in 2 places. That has REALLY set me back & then some. And add female "problems" to that. So, I say, "What support"? And I've lost more close friends than I care to count.
- —eaglehaslanded
Chronic Fibromyalgia
- I was diagnosed with this in 2004 and i do suffer with the painful ice-picks headaches mainly at nightime which of course interferes with my sleep. I also get the tenderness in my breastbone and on the ribs as well so there could be a connection with C/F. I find it very hard to keep going, i was told to do thing about the house etc and then to rest for an hour and to do this all day but i think it is ok if you have family support. I do have a great Husband who is there to help on my bad days. I just wish there is a support group where i live and there was a hydrotherapy pool which i could go to as that is a great help, i do think the NHS could consider having one at main hospitals as there are so many people who have the condition, would like to hear your views on that one.
- —Guest Carrie Nourse
my new life
- When I joined Food Addicts Anonymous I gave up eating flour and sugar. I never expected my fibromyalgia to go away. I have suffered badly for 15 years. The pain and the sleepless nights were destroying my life. After only 2 months of eating without sugar and flour I am pain free and sleep like a baby. For me the flour was the cause of my condition. It is an inflamer to all systems of my body, including my liver and my mind. Both of which are healthy and well now. Before I was in too much pain to even walk, now I use the tread mill at my gym for 30 minutes at a time and lift weights for 40 minutes. My mind is clear and every day I seem to have more energy. Please consider what a diet without flour and sugar might do for you.
- —Guest bill
Support/Support Groups
- I would greatly benefit from a legitimate support group. Unfortunately there are no support groups in my area for chronic pain/fatigue. When I had to go to physical therapy there was a "flyer" advertising a therapist there who was starting a new "Fibromyalgia" class. She was charging $40 for an eight week class. I thought, well that is worth it... so I checked into it and found out that it was just a "yoga" class. My therapist told me that not all yoga techniques is good for Fibromyalgia and that I should not spend my money on it. That it could do more harm then good for me. The only support I have been able to find that is ligitimate and very helpfull is this website, with Adreinne's forum. I have checked other websites and their set up like "chat rooms" and do not discuss much about anything, other then what they are doing at that moment, drinking coffee.. what they are doing for the weekend, ect. I can get that kind of conversation from my neighbor next door!
- —Dee1127
Support Groups
- The greatest support we all need is our familys. Here we have lost our dignity self worth and lives we once knew. America wake up and educate yourselves espcially family and friends if you care. You could be the breaking point for our lives. Thank god for support groups without them this world is a very cruel and we are so misunderstood. Stress kills support heals. Bless anyone who offers support little do u kinow u r a link to helping us to survive.
- —Guest Michele Rivers
Support
- I have severe fibromyalgia and chronic fatigue and severe pain syndrome. Never have I realized how uneducated familys and the public not being aware how serious these diseases are. I was blessed to find a support group through Web MD called Patients Like Me. On some of my hardest days espcially not only sufering physically but mentally from the lack of compassion and understanding by the people I love. I wrote to themand asked for advice on how to deal with and was shocked to realize how many sufferas I do with zero compassion or understanding for what we have to deal with. Losing friends because you have to live your life hour to hour. How cruel this world can be. Stress greatly exacerbate's our illness and our family and friends and family can be the worst culprits in causing it. Anyone who says to you you need to try harder & do more is cruel beyound words. When you are so exhausted the worst thing you can do is push yourself. People are so clueless. Support is needed so bad.
- —Guest Michele Rivers
not always supportive
- I attended a support group meeting that is held during the afternoons, so after I got work I was unable to go back. But unfortunately I would not have returned anyways. Often what I've found is that in an attempt to be 'positive,' sometimes other ppl with this illness can get a bit judgmental with others who are having a hard time (newly diagnosed and/or lacking support). When a new member expressed their grief over the losses in their life, he got jumped on and shut down. It's easy to forget that there is a grieving process, and that not everyone has support and will always struggle. They need real solutions, not platitudes and lectures.
- —Guest taliba
Proceed with Caution
- I find my best support online. I wanted to share my experience about a local "support group." I learned that the person organizing the group had multiple sclerosis, not fibro. She said she wanted to help other people and I felt very touched and thought the sentiment was sincere. When I attended a "health seminar" put on at a local massage school, I was surprised to be sitting and watching a colon cleanse video. Products were passed around the table and there was enthusiastic (planted?) discussion about the benefits of similar products and other natural products. I felt very, very sad. I had come in the hopes of meeting others who were trying to cope with the illness. I felt mislead and frustrated. I believe this was someone who was trying to make a living because the MS might have prevented her from other types of work. In that sense, I feel badly, but I wanted to let other people know what happened. There are also (gimmick) doctors who try to suck people in, in similar ways.
- —greybeh
Pain Fatigue
- My sympathy to everyone with this malady. I've had it, I feel sure, for over 30 years. I'm now 66. Finally got a diagnosis about 13 years ago. Prior to that my doctor thought I should just have therapy because I was depressed! I have a lot of pain in my legs, the back of my thighs is the worst. In church I cannot stand still due to the pain. I have ringing & itching in my ears. I have stopped taking Zocor for cholesterol and think maybe the muscle pain is slightly better. I know my doctor will not be happy about this choice. The fatigue gets me down more than the pain. My husband doesn't understand at all. He seems to think I should be able to do everything I did when I was 35. I take quite a lot of Rx: Neurontin, Ultracet, Cymbalta, trazadone. I hope some good will come from this new virus information. God bless you all.
- —Guest SewJudi
Support Groups
- Personally, I love support groups... I've attended several and I started one for the East side of our Valley! I get so much from everyone in the group... caring, sharing, loving people who have a lot on their mind. They are men and women, all ages and at different stages of their syndrome... some have just been diagnosed and others have had Fibromyalgia for 10-20 years. I absolutely recommend going to a support group because it always seems to help to talk about your concerns with someone who REALLY understands. Maybe their spouse 'doesn't quite understand' or they've got a 'wierd' symptom (only to find out that the majority of the people in the group also have that symptom) and find out that it is common for someone with Fibromyalgia. I learn something from the others every time I go to a meeting!
- —dkennelly2000
