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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How to balance Fibromyalgia and CFS?

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I have a problem with pain that makes me unable to properly rest during the day, the pressure pain you get when lying down. Instead I have to read, watch tv, etc to distract me from the pain when lying down. I am not getting true rest. I would like to find a way that I could get proper rest during the day

Opiates work very good, but for long term usage once every 3rd day is all I can handle. LDN works very good for a couple weeks usually, then it doesn't. It may also cause anhedonia as a withdrawal effect for a few days. Marijuana works ok but not good enough. NSAIDS I can't use due to blood thinning. I don't think they have any effect on pain regardless. Tylenol may have a minor effect(or no effect). I think exercise helps but only a bit. Certain music helps too but again not enough

Anything that has helped the fine ladies and handsome gentlemen of PR? :hug:
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
Just started lyrica a couple of months ago and it has helped. I'm taking a fairly low dose, and only at night as its too sedating to take in the a.m. It's enough to make it tolerable, I definitely think about my pain less and it's also helped my neuropathy some. Could go to a higher dose but I am so sick of drugs at this point...I have the same problem with the pressure point pain, jeans, bras, my Ipad resting on my tummy all hurt before I started taking it. Now it's better.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
@Firefly_ I tried Lyrica too but unfortunately all it did was make me stupid. My brain barely works at all on it. I tried Cymbalta too and all it did was make me sleep for 2 weeks straight
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
There is a few things I can think of you can try.

1/ Softer bed topping to lay on, there is also special designed ones now days which I think can help with pressure.

2/ use cushions where needed to stop pressure contact eg I used to get the FM point flare up by the sides of the inner knees and then the pressure of one leg on another leg if I was laying my side really hurt. I found thou that sleeping with a soft cushion between my knees was the answer to that sore place.

3/ hypnosis sessions can be used to help with pain (not something Ive tried for pain but i once used it for something else successfully after 6 sessions with a professional hypnotist. Ive heard about it being quite effective at times for blocking out pain.

4/ If you have the FM due to ME, take care not to aggrevate the ME as it can make the FM worst. My FM went away (and fortunately never came back) after I had a remission with the ME. It was directly related to it.
 

Firefly_

Senior Member
Messages
235
Location
Oklahoma, USA
@Firefly_ I tried Lyrica too but unfortunately all it did was make me stupid. My brain barely works at all on it. I tried Cymbalta too and all it did was make me sleep for 2 weeks straight
Sucks about that, I wouldn't take them either in that case. I do take tramadol also sometimes, and it's helpful, also, if you can tolerate them, hot Epsom salt baths are temporarily helpful, and yes a pillow between the knees as Tania said at bedtime is great at relieving that pressure point pain and also helps hips a bit.

It's awfully hard to distract yourself from unrelenting pain, even if it's not severe it's like a constant annoying background noise. Hope you find something that helps.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
There was a chapter in Doidge's The Brain's Way of Healing about a scientist who had chronic, constant pain and through neuroplasticity nearly eliminated his pain experience.

http://www.normandoidge.com/?page_id=1042

"Using this more nuanced understanding of how our brains work, scientists and practitioners have learned how to use neuroplastic therapies to address many common conditions and to offer hope where prospects for healing were long denied. We see patients in whom years of chronic pain have been alleviated, and others..."
 
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ukxmrv

Senior Member
Messages
4,413
Location
London
I developed FM pain and stiffness after a road traffic accident. The best pain relief for me came from a combination of Celebrex and Valtrex. Before this combo the other best pain relief was dry needling into the painful areas. Cold water immersion as well.

Hope this helps.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I found thou that sleeping with a soft cushion between my knees was the answer to that sore place.
I did this for a few years but believe it or not it contributed to my deconditioning so I had to stop it. Lying on soft surfaces has contributed to this as well so while comfortable I try to make sure I lie on the floor regularly to help combat this :p