Life with fibromyalgia

Hi, I have had Fibro for years but am now getting increasing bouts of Chronic Fatigue! I have learned to cope with the fibro pain but the exhaustion is a shocker! I've had days where I can hardly move or sit up or eat!! Any one else had this.

Hi everyone,

don't forget that we now have a medications unit on Carenity (Give my opinion -> Medications) and that you can find the medications/treatments you've been taking for your fibromyalgia, rate them and give your opinion so that other members could learn from you.

The more members comment on the medications, the more useful this unit will become.

Thank you in advance for your priceless contribution to our patient community.

Kind regards,

Margarita

Fibromyalgia.
I have done extensive research into Fibromyalgia through my clinic, using patients experiences to form my results.
In all cases, Fibromyalgia symptoms started to present themselves 6 to 9 months after a traumatic incident; this could be physical like open heart surgery or emotional like the loss of a loved one, or both.
The trauma then results in prolonged stress, and stress increases the level of cortisol present in the body. Prolonged high levels of cortisol causes serious problems for the body and brain.
Sustained high levels of cortisol will create free radicals which attack brain cells causing them to basically explode, 🤯 don't worry, we don't feel it. 😊. But this results in short term memory loss and the inability to focus or concentrate. (Brain or Fibro Fog)
Sustained high levels of cortisol also damages our nerve endings, the nerves then send an undefined signal to the brain, the brain doesn't know what it is so er's on the side of caution to protect you, so tells you, you are in pain. 😟
Cortisol is naturally produced in the body, it acts like caffeine and spikes to wake you up in the morning, then decreases through the day so that you can sleep at night. High levels will cause anxiety and stop you going into REM sleep. So although you can sleep for 12 hours, you will still wake up feeling tired.
Cortisol also spikes during the Flight, Fight, Freeze response, and after this spike will trigger the craving for sugary and fatty foods, in order to replace energy burnt off during the Flight, Fight, Freeze response, even if you haven't expended any energy.
The best thing to do is reduce your stress to reduce your cortisol levels.
These all help:
Massage
Meditation
Hypnotherapy
Exercise
A clean healthy diet. (No caffeine or processed food)
Mindfulness
A gentle walk in the country
Grounding
Sleep routine
Put your blue light filter on your phone to switch at sunrise and sunset.

I hope this helps.
Any questions, fire away. 🤔

Hello,
This discussion in Treatments for Fibromyalgia has been moved because we think it will elicit more responses from this group: Living with fibromyalgia.
Have a great day,
Courtney_J from the Carenity Team

@MattSWLong 

Hi Matt

Just read your interesting comment. Wondered if you knew anything about ME alongside fibromyalgia?

My experience has been a life long one. I was diagnosed with asthma at 2 years old after a serious attack hospitalised me for 2 weeks and I struggled throughout my life with 'asthma' although drs couldnt understand why I was always affected with exhaustion and fatigue which meant I recovered poorly from asthma attacks. It was the 60s!

I finally was diagnosed with ME in 2010 by a Consultant who believed I had been living with it since childhood. I had wondered in the 80s if I had ME as I seemed to have the symptoms but could not get any drs to take me seriously at the time so gave up. My parents basically ran my life for me! I was also diagnosed with fibromyalgia at the same appointment although I didnt really know anything about it. All Consultant said at the time was that what he could tell me to do for fibromyalgia would make ME worse and vice versa. So I struggle with getting any help and with asthma in the mix any medication seems to set off asthma symptoms :( I have become quite depressed over time as I felt so relieved to get a diagnosis but instead of helping it seemed to bring my life to an end :(

Just wondered if there is any way I can get any help? I have tried so many things over the years but nothing has seemed to help and I have a few bad experiences with supplements and oils trying to treat myself. I was so bad at one time the dr at the time took away all the supplements and threw them away!

Please do not recommend exercise to Fibromyalgia or ME/cfs sufferers 

It has taken several years for us to fight for the removal of BT & GETS as a  recommended treatment with WHO 

Exercise and graded exercise is documented by millions of us sufferers in the world to to cause major flare ups and increased pain 

It took many years of dedicated while severely chronically ill people to get WHO to give recognition to the problems of Behavioral Therapy and Graded Exercise Therapy and finally acknowledged their detrimental effects and to remove it as a recommended treatment by doctors in United Kingdom & Ireland & many European countries And thankfully Canada Australia & USA are acknowledging now also 

@Suzhannah That's very interesting, most of what I've read on fibro has said that gentle exercise helps to ease symptoms. I don't know anything about ME/CFS so I can't speak on that.

@MariaB hi 

ME/cfs is a condition called Myalgic Encephalomylitis or ME and the cfs is chronic fatigue syndrome which is very similar to Fibromyalgia There are schools of thought among scientists who say both conditions are the same And people who say no. Officially in Ireland & UK a consultant rheumatologist is needed to confirm Fibromyalgia diagnosis and a consultant Neurologist is needed to confirm an ME diagnosis Both conditions have chronic fatigue all over pain & many more symptoms Many of us have fought or supported petitions & fund raising to go up against the WHO (world health organisation) to inform them with many doctors support that Graded exercise therapy is completely counter productive in most cases it causes more pain and a crash and or severe relapse. Of course it is your body and if you can tolerate gentle exercise or a little yoga or walking (even a few steps round the house if you are often bed or housebound) that's up to you 

My point is and I should have been clearer Please do not be pushed into a Graded Exercise Therapy (GETS) or attend Behavioural Therapy (BT) on medical say so These programs are completely unsuitable for us and will cause more harm and as I said can cause severe crashes

But you do what is right for your physical and mental health but please dont go on GETS or BT programs at the insistent of Doctors who do not understand these conditions or support the ME findings (medical reports & stories of sufferers) lodged with the WHO 

Best regards & please dont be offended at any typos

Suzy x 

I've got Fibromyalgia and finding it more and more difficult to cope with its side effects, which seem to be increasing, especially the brain fog but now feeling edgy all the time and constantly tired, with no energy at all. I'm only Co-codamol and methocarbomol, a muscle relaxant but little appears to help in any way. Nevr seen a rheumatologist, so should I try that route. perhaps?

@joolzH1 I am finding the same. It's as if I haven't slept in days. Too tired to do anything some days. I noticed one of my meds had that impact and stopped it. But now it's back. Very frustrating