Sick of waiting

Yes, I am impatient too.
Why is there so little being done to find a cure?
Is it because Fibro affects mostly women.
Is this why?
Or is it because the medical field still thinks Fibro doesn't exist?

It's most annoying to be told, try this, try that. There's no way I am going to give up my coffee, I am already drinking mostly decaf and aren't I allowed ABIT of caffeine in my life as a morning treat. My mum bless her heart said I drink far too much coffee and so and so who also has fibromyalgia has only one cup a day and it has worked wonders.Someone had better find a cure for this fibromyalgia noose ASAP...People that mean well, relatives have no idea, I was even told not to say anything if I start to stutter my words...
Yes please find a cure ASAP, I just want to carry on eating what I like when I want, it's the only pleasure sometimes when in a bad fibromyalgia flare. If there was a cure we wouldn't have to deal with well meaning people saying this works, try that etc ... Yes our lives seem to be going in a direction we were not intending before fibromyalgia came long, so I am also impatient. I just want while waiting for a miracle cure to be left to muddle along in my own way and yes just allowed to be grumpy on bad days without having to apologise!.

!! I hear you!! We’re all saying the same thing. And I’ve had it for 25 years. Please I’m gonna say this with a laugh, but also I mean it, take drugs. When you get to the pearly gates, Saint Peter is not just gonna say good job. You didn’t take any drugs. Nope he’s not gonna say that so take what you need. I take Savella, gabapentin, and started Tamaya. Now to go on vacation, which just started this last two years I told my doc I could not go on vacation due to the pain and that I wanted something extra to take during my vacation. So she gave me 10 pills of tramadol. So on vacation, I take one in the morning and one at night. I also make sure I have a hotel that looks out over something beautiful in case I’m the one sitting for the day or afternoon. She only gives me 50 mg which is not very much for an old person like me. . I also make sure I have a hotel that looks out over something beautiful in case I’m the one sitting for the day or afternoon. She only gives me 50 mg which is not very much for a old person like me. But it allows me to have a vacation. She is very reluctant like I’m going to become a drug at it because she only gives me 10 pills with no refill. So every time I go on vacation I have to ask for a refill. Anyway, that’s what’s working for me now. You’re not alone in this everybody on this site thinks the exact same thing.

I hear you. If I had cancer pain I would get real pain medication. Just to take the edge off every now and then. I’ve always been reluctant to take drugs legal or otherwise. When I get medication from doctors for anything I can’t wait to try and get off them. But if you have fibromyalgia you can just suffer and be miserable. Fibromyalgia doesn’t kill you, as a matter of fact many live very long miserable lives from what I’ve seen. Every time one pain subsides I get a “hello “ from a new or a remake of an old pain that always feels worse than the last place I had pain in. It’s hard to believe more can’t be done or at least in my case a better medication discovered that doesn’t break your brain. I’m angry and grouchy because I’m in so much pain right now. I pray for us all.

@tin555
There is little to no academic research of any kind being done now due funding cuts by our current political administration. There is no funding for research, except big pharma. VOTE!

@tin555 this part .. God knows we complain about it enough. The medical world despite having physical evidence since 1987 know this is a real disorder , why they are so up in arms about it ,I don't know. I will be persistent in my care but I will also be honest about whether it produces results or not. Cutting out certain foods or limiting them helps everyone feel a bit better , but that's in no part a cure or a solid way to treat this thing.

@lylii We don't need funding from the government for this to be done and I do agree with you on most of what you said for future studies but as of now they still have some funding. Not enough at all but some. So yes, do vote but we also need to gather in groups and speak to our mayors , senators and house members. If they see us in a big group they will take us seriously.

I'm impatient too, some days more than others. I am likely going to see a Functional Medicine doctor, hopefully soon, to see if they can help me at all. I'm trying not to get too hopeful, though, because I'm kind of used to doctors and others saying "You're a bit of a mystery" or "The things proven to help are x amount of cardio and x amount of weight training" and "stress management.'' I'm sure not stressing out would help to a degree, but I don't know how I'm supposed to be calm when my body is going haywire...

Only 2-4% of the global population has Fibro. One reason it is so hard to find doctors and treatments. I have to disagree about funding studies and the government. Big Pharma is not likely to want to do research with so little remuneration. The newest drug in 14 years, Tonmya costs me $982.00 which Medicare does not cover. I just sent in a letter to ask that they cover. I’ll let all know but I doubt it. Fibromyalgia can now be covered within disability if you do it right. When I left the workforce 20 years ago they didn’t. You can imagine how humiliating it was to stand before a judge (and I cried) to be looked at like I was scamming the system. Turned down . I also agree you don’t have to walk alone on this path. See a therapist. They can save your life. You can even do it on Zoom if it’s too hard to get out.

@leoandbear
Only 2-4% are getting diagnosed as having fibromyalgia. The road to diagnosis is long and expensive. Not everyone can afford the required visits but I guarantee you they are suffering. With the right money behind a campaign more sufferers can be diagnosed and treated.