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. 😋

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 😇

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.

@A MyFibroTeam Member
First of all let me say that you have joined a wonderful site. The fact that you don’t have too many complaints is ‘good’. You have mentioned the medications you are on and they are obviously helping you if you wake up a #3. I wish I did. With fibromyalgia, I don’t think that anyone (I could be wrong) has a day with no levels of pain. If you ever find that you are having any kind of side effects, check with your doctor regarding the medications, as it can happen. . . I took Cymbalta for 4 years before getting side effects from it. It was a good medication before my body decided otherwise. . unfortunately!

Regarding ‘telling your family’, you should let them know that you are in pain so they can be understanding but perhaps, not over dwell on it. It is good if you ask them to read what fibromyalgia is all about, as then they can have some understanding of what you are going through. If you get understanding and compassion from your family that will be ‘the pot of gold’. I am so grateful for the love and understanding from my family but I also know that they can never understand the ‘depth’ of my pain. How can they, when they have never experienced it?

The pain can be all over or sometimes just in a few areas. Try and read up as much as you can. And listen to your body. If your pain increases, just rest and don’t overdo it. That is how we are trying to manage our day to day lives. God bless you, Kim, and ease your pain.

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