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A MyFibroTeam Member asked a question 💭
south manchester uk

Left to own device's.

July 18, 2016
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Answer Summary

Members shared widespread frustration about the scarcity of doctors who truly understand fibromyalgia, with many reporting they've been left... Read more

Members shared widespread frustration about the scarcity of doctors who truly understand fibromyalgia, with many reporting they've been left to manage symptoms on their own or cycle through multiple providers who dismiss or minimize their condition. Several members offered practical advice from their own journeys, including seeking out pain management specialists or rheumatologists who take fibromyalgia seriously, advocating firmly with current doctors to expand their treatment approach, and investing in alternative therapies like acupuncture, massage, and swimming when mainstream medicine falls short. A recurring theme was the emotional and financial toll of navigating a fragmented healthcare system that rarely recognizes fibromyalgia as a legitimate, debilitating illness, met with deep solidarity and encouragement to keep searching for compassionate, knowledgeable care.

A MyFibroTeam Member

My pain management Doctor manages my fibro. With the help and coordination of care from my Psychiatrist, Integrative medicine team and Internal Medicine Dr.
I have found that this very loud abnoxious Illness is still unknown and still not acknowledged by many. It's really Sad!
I also found that once you are properly diagnosed, the best course of action for me at least was to find a PM Dr. Who understood the severity of Fibromyalgia period. Mentally & Physically as well. Or else your doomed. Unfortunately it took my Doctors over a year to come up with a cocktail to at least make me not want to die everyday. Lyrica, Cymbalta, flexiril, Xanax, Amitriptyline, and Morphine is what gets me through a daily day of horrifying constant chronic pain. Some days nothing helps because of the sleepness nights.
I am and will forever be grateful for the medical team involved in this fight with My Family & Myself. I hope you find some Angels to guide you through.

July 20, 2016
A MyFibroTeam Member

I had a GP years ago who told me I had fibromyalgia when other doctors just kept fobbing me off , he was the one who referred me to the Rheumatologist to get me diagnosed properly.

My GP then understood all about it. When I asked him how did he understand , he told me he had studied all about it and believed that it was a genuine illness. He said other doctors did not as they had never got to grips with it as an illness and passed a lot of suffers off with being Hypochondriacs. He said it was only when you studied it and read all the medical papers on it then you truly understood it.

He has retired now, I just wish there were more doctors like him around. He told me not to get stressed, not to over work myself, not to take on too much. To each good but regular meals, not to stick to 3 meals a day but to eat small regular meals. To eat a good but balanced diet when I can, to stay away from Tomatoes as they set my arthritis off and that flares my fibromyalgia up.

To go swimming as much as I can. To take warm baths and try to relax as stress plays a huge part in flare ups. To get as comfortable at night, not to have heavy blankets or duvets, but light weight duvet and a sherpas blanket in the winter . To always plan your day twice, one if its a so called normal day and a second if your having a bad day, just incase you have a flare.

I found his advice very useful. The Rheumatologist at Manchester Royal, diagnosed me with Fibromyalgia and told me to take Pregablin I could get that from my GP that was it. I was never asked to return to see him. I got more help from my old GP. I would have not got my diagnosis if it wasn't for him.
I still struggle to get GP's to understand even though it clearly says in my notes Fibromyalgia.

July 19, 2016
A MyFibroTeam Member

You complain all you want, you are only speaking the truth. This is why I call them medical business people. Doctors care, not anymore.
Instead of me paying out of pocket to see some doctor who knows me for 5 minutes, writes some prescriptions and rushes my out after waiting hours to see them because they have a golf game or something. I use that money to buy healthy food, water and my supplements and vitamins and what ever else I need. At least now I see a difference, I feel so much better. With doctors I was dead in the bed everyday. If you ever need to vent, I'm on face book. Keep hope alive!!!!

July 18, 2016
A MyFibroTeam Member

It is a pity, that GP' s don' t take the time anymore. And the referral procedure is in every country different.
I got diagnosed in Germany,; now in IE everything just runs under arthritis & pain / depession management.. Our Nat health Service on the medical Card is basic with very l o n g waiting times for rheumatology specialists, if we even have enough of them . You won't get any Physio advice etc( e.g. for frozen shoulder) unless you got a nerveblock injection. There is No back - up & recognition of this condition for PIP s or any kind of disability benefits in IE, & added existential fears/ money make anxiety and depression worse!
Nor is recognised , just how little mainstream medicine can do for Fybro sufferers with other attendant conditions...& how helpful to some people alternative treaents are, from acupuncture to massage, to Cranio- sacral ' energy ' treatments or to get muscles and spine/ hips aligned again... All of which needs to be paid privately!
I wish fortitude and the right support to everyone on their very personal paths to find relief.

July 18, 2016
A MyFibroTeam Member

Because we are not close enough to give you a physical hugs, we offer online hugs for to bring some comfort when you are feeling down. We cannot heal you, or make you better, but we can send each other hugs of support. You also know that we know how you feel because we are suffering along with you.

July 22, 2016

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