When I was told this awhile ago I just went back to my car at the hospital 🏥 and literally cried.After spending good money within the private medical sector I felt robbed literally & used etc.
NHS were no better either with there explorations.
Met a guy from the states who is a CEO at a large corporate medical company who told me they had researched Fibromyalgia for 15 years and wasted a million dollars at it as they kept hitting 🧱 brick walls,so they pulled the project completely etc 😔.
Personally I feel there is no cure at all,maybe one day in the 22nd century something will change but who knows etc.
I hate waiting & stagnating in 24/7 pain.
As mentioned before I have trialled all known medication & neuro blockers etc & nothing works for me.
They say exercise but how can you do this when feeling in extreme pain & feeling so fatigued & tired & out of salts etc.
More time & effort should be put into in-depth fibromyalgia research.
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Fibroguy66
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Honestly, not surprised. Think I'm done with the constant searching, done with the doctors. Having to constantly explain and listen to some of their bs over the years I'm just done!
Obviously I keep an eye out for anything new but other than that I'm pretty much done. I just deal with everything as best I can and try not to stress too much.
I'm now just a post menopausal working woman with chronic pain all the time with fibromyalgia, neuropathy, neck damage, CKD, various skin conditions, wonky thermostat, horrendous sleep, fatigue and brain fog etc ....
Personally, for me anyway, having continuous pain is easier, it's my normal. To have pain free days must be so difficult, it must feel like being robbed of your health every time the pain returns and knocks you down.
We used to meet up every month to compare notes on the research we were doing but, after a couple of years I grew tired of "fighting" it and decided to come to terms with it.
I am very lucky because I am a stoic and find it very easy to come to terms with things that are beyond my control.
I concentrate my efforts on researching my heart condition these days.
I would rather extend my life than pursue a fruitless search to relieve my pain.
I hate the term "fibrowarrior" because It's an energy sapping battle that I'm not going to win.
I prefer to be a "fibropacifist" and enjoy the bits of life I can control.
Hi Carlt, I entirely agree with you. Over 40+years of dealing with this illness. Looking back I regret the first 10years of struggle trying to find the answers not to mention the mega amount of money I lost searching for answers . Buying the latest miracle cures etc.
Now 40yrs on I'm a wheel chair and a rollator user. Can't leave my home without hubby. In pain everyday and age bringing new issues to the party.
But for me with acceptance of fibro, I found my pain actually decreased slightly. The more time I spent thinking and complaining about my illness the more I hurt.
Now I take each pain filled day one at a time. Hindsight is a wonderful thing isn't it. If I knew then what I know now I would definitely have made more of those first 10 years that's for sure.
My brain is my go to tool in my fibro first aid box these days well what I have of one lol
I have various serious health conditions including fibromyalgia and some days I feel like giving up and not taking my huge mixture of meds but I knew I would suffer more and be in agony.I am very stubborn and say hell to them and try n do what I can when I can.My second home is the hospital and doctors.Yes it’s true you must try n exercise even if it’s armchair exercises.I used to do a lot of walking but injuries have stopped me ,so while my husband is walking with his club I have a slow stroll round the shops, while trying not to fall over.Some people say get checks done on your thyroid.Have it done by private checks as they are more thorough.
I do understand as will many members here , I went too the doc on Thursday, (we never see the same person at my surgery which is not helpful )gave me a link too talk too NHS Well-being , I politely went along with this , okay they ring you and talk threw how you are feeling and how your mental well being is being affected but I find it’s much more helpful too chat here ,, I asked about changing my medication but I’ve been told too wait couple weeks as I have a Sinuse problem and it’s making the fibro worse , achying, terrible fatique. I tried too say but it’s the last year my pain is getting worse and I am struggling more. Oh well if this horrid Sinuses jog off il wait and try again. I get your frustration , take care.
Hi Fibroguy, sorry for your suffering and the lack of help. I would say to you that I had a flare at the end of August that left me housebound and unable to do anything but transfer from my bed to the living room sofa. Naturally I could not exercise in the usual way so I decided it was best to focus on movement.
So initially it was standing up from the sofa and sitting back down at intervals. Then it became walking from the living room to the kitchen, which was hard at first. My doctor advised me to get out in nature so I spent time when it was Summer sitting in the garden. Then, after doing that for a while I began to walk round the garden and after a few weeks I was able to increase this to walking round the garden twice.
I've been working on movement around the house and more recently I have been able to put some laundry in the washing machine and put it on. Now I can also iron a few items for half an hour and will continue to increase my activity.
I did small movements for a few weeks and then took another small increase in movement. I did the shopping online, including gift and card buying at Christmas. I kept my thoughts positive and believed that I would recover from the crash and used affirmations and gratitude journaling. And I kept in touch with family and friends on WhatsApp, emails and messages.
I watched and read things that made me laugh or inspired me and I used deep breathing and stretching like a kitty. Energy in equals energy out. I thought about getting energy into my body including looking at not just body but body, mind, emotions, and spirituality. So not doing too much reading or writing and resting from social media and electronics. Looking at nutrition, rest, sleep, movement, and meditation.
I started to meet up with friends for the occasional lunch or coffee, which helped me to feel like I was part of the world again.
I feel so much better now and I'm going swimming in a week's time with a friend. My muscles are probably deconditioned, so for my first time in the pool I will just enjoy being back in the water and seeing how my body feels.
Soon I will be going back to my T'ai chi class and when the weather improves I'm looking forward to going for walks in nature.
Learn to listen to what your body needs and I hope you find my experience helpful.
Brilliant. Well done you Elaine.👏 👏 I tend to do alot of what you do movement wise. We need to keep moving for sure. Use it or lose it is my mantra lol xx
I’m reading this today when I’m feeling the lowest I’ve ever been, so sick of this miserable weather. I’m so hard on myself as I hate the fact I cannot sleep then I fall asleep at 6am only to find I’ve wasted my whole morning by waking again at 11am ! What I hate is trying to explain to friends and family how much pain I’m in without being miserable all the time, my moods have changed I’ve stopped doing anything I used to enjoy and I can’t get out in the garden because of the weather. I really wish there was more help for us and groups that you could just meet up for discussion. I used to exercise four times a week but since December I haven’t been which could be a huge factor. Sorry I’m moaning so much but I feel so helpless 😩😭
A reality group meetings would be excellent and I totally agree with you,as messaging is not the same etc.We all feel down or a burden it's all part of this illness decease thing etc.
I cry most days now as I feel helpless. Constipation, dry eyes and dry mouth and lips every morning and the pain in my shoulders I just feel like stabbing myself in my back to relieve it ( not that I would)
I agree with dizzytwo below. I wish I had accepted it and stopped trying to look for a cure. However I learnt a lot on the way and am on a few medications that I wouldn’t have been if I hadn’t researched how to help myself. Acceptance is hard - watching friends living a normal life - but does ease the pressure of trying to join in and suffering as a result.
8The world is too big and our brains are small. 2 weeks ago my whole world fell apart when my work redeployed me to another location and cut my hours. I fell into a spiral. This was also coupled with me coming off of cannabis flower entirely, so I can travel internationally. I was looking for a replacement and went back to Amytriptaline. At this point I was bedridden. Forget getting on the plane, I couldn't even get out of my room. In the night I kept calling for my Mama to take me with her, she passed from cancer in 2020.
Then I realised that it was the medicines that were giving me these violent mood and energy swings. So, I stopped them all. The only thing I take is Tostran for Klinefelters syndrome. My brother gifted me a walking stick. After I fell when on holiday and the hotel in Malaga province loaned me a folding Zimmer frame with wheels and brakes. He called that the 'Bentley'. He's got a wicked sense of humour.
I did make the plane in the end. And the time away in Málaga's off season 9°C to 15°C storms and all helped me re-evaluate my life. My employer had used and abused me for the last 6 years. Enough was enough. Time to start doing what I feel passionate about. I'm a Creative Engineer and Artist. I can apply my talent to anything I want to.
What I learned was sod it, its another thing on the list. Time is precious, its the only commodity that can't be made. The destination is not important, neither is the journey. What's important is the company you keep.
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