What are your expectations of a support group? So I've been to many Fibromylagia / chronic pain support groups over the years and even some ONLINE support groups conference all/webinars. What I keep experiencing is the same people complaining about the same issues and so the entire hours/hours turn into a rant/vent space but NO SOLUTIONS and NO ACTION! There isn't any ACTION to help or assist us in making things easier for us emotionally, financially or physically.… read more
I expext the National Fibromyalgia Association to send me a free purple butterfly bracelet instead of trying to sell it to me, and have a symbol for men they can relate to as well and send them one too as well as a free fibromyalgia self care starter kit with samples of fibro products donated by the companies and a booklet of help I can refer to. 😋
Well on this site I have had help with problems and issues I have had. If you put something out there for help people will respond with help. People do comment on themselves to vent but not always. We all have our own stories about the issues we have some are the same but some are different. And if we put that information out some people come back with different things to try like some supplements, exercise or food you'd be surprised. I love this site, I love the people and I think we're all just doing the best we can with what we have to work with.
I think doctors need to step it up and get as much information from us, do the trials, pick the people and get something going. I would love to be in a trial for Fibromyalgia patients. They don't know anything about fibromyalgia and they need to figure it out there's more and more of us suffering ih so much pain. It is something misfiring in our brains and they need to find a way to stop it so we can resume the lives that we were meant to live. Living and merely existing are two totally different things. I am looking forward to the day when that can really happen. 🥀
I personally have got a great deal of support (especially understanding and compassion) from this website.
There are many who let us know what has and hasn’t worked for the fibromyalgia, and explain the reason why something did or didn’t work. Which is a big help when trying a new medications. We are all individuals and may have bad side effects to a specific medication, whereas it may help another person with excellent results. This is excellent input and which is helpful to all of us.
Apart from the medical treatment possibilities, there are SO many people who offer their sympathy/compassion for those who are grieving or going through very difficult issues on their own. This kind of support is priceless and we are extremely grateful to have it on this site.
It is through the constant support, love, reassurance etc. that I have coped as well as I have for the last 5 months.
I can never express my gratitude enough to so many people who have shown that they care for me and others here.
God bless all of you.
Whom ever wrote the statements and after asking the questions regarding lack of support, really is courageous. It takes much to provide fresh ideas for support groups to grow in meeting practical needs of members.
I find MFT providing individual support by team members, dealing primarily with the emotional aspects of FIbro and such suffering. It appears to be a safe forum to share the agony one thought only they were in such pain. Those who are brave enough to reach out to others, they are blessed with incredible suggestions and guidance.
I agree that more practical services and awareness of this crippling disease needs to be addressed. Cleaning, marketing, discounts, and other services need to be looked at to help folks who are on fixed incomes and not able to work.
When folks have been active in life, having careers and more money, only to have It all disappear slowly with bizarre symptoms that scare all involved, well, suddenly others find you appearing normal only to be lazy and strange.
Trying to explain is next to impossible. Those who know the suffering involved, here, are making a difference for others, including me. I am so grateful for the sweet support from my team.
Perhaps someone has the strength to start working on these suggestions. I am in bed, and have to move from my home of 18 years because of lack of money to support caring for my home. It is killing me, and it would be wonderful to have help with cleaning or suggestions for these practical needs.
I don’t have any ideas as one person, but as a part of MFT, I would love to be a part of a think tank to come up with help from other organizations to help make FIbro a seriously known disease and get more people helping us.
Forgive me if I have spoken inappropriate, because it is obvious MFT has worked hard to bring people together, and I again am thankful for their efforts❣️
As Always, Deb 😇
Has anyone tried the resources through the cfidsselfhelp.org? I took there online course swhich I found very helpful. Their is a book and the program was developed by two doctors who have the illness. I ended up making friends from the class who were having similar challenges to myself.