• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Muscle pain

Messages
34
How many of you have muscle weakness and muscle pain where it feels like you lifted weights and your muscles are sore? Is it inflammation, lactic acid build up, or what? and does anything work to ease the pain?

The pain level seems to coincide with my Fatigue level too.

Also, there are certain tender spots in the muscles like knots that feel good but hurt when I have them massaged. Isn't that more like Fibromyalgia? I hope I don't have that too
 
Last edited:

Manganus

Senior Member
Messages
166
Location
Canary islands
How many of you have muscle weakness and muscle pain where it feels like you lifted weights and your muscles are sore? Is it inflammation, lactic acid build up, or what? and does anything work to ease the pain?

It's in my arms, calves, back, and neck and it seems like it's been getting worse the past 12 months. The pain level seems to coincide with my Fatigue level too. Also, I always type at the computer with my palms resting on the desk, but it's still been a challenge and it feels like weights are attached to them

Also, there are certain tender spots in the muscles like knots that feel good but hurt when I have them massaged. Isn't that more like Fibromyalgia? I hope I don't have that too

My (virtually) cronical aches, which were my companions for many years, did finally abade after some years of taking Ketoprofen and after living over a year much closer to the equator (at the latitude of Florida).

I can't say for sure how much either of the climate/sun or the Ketoprofen contributed.

During the first ~10 years, I got pains after (mild) physical exertion. They seemed to originate either from the membrane that covers the outer surface of muscles and/or bones, alternatively from the muscular tissue. At that time I was fairly convinced the aches were the result of some kind of autoimmunity.

The role of lactic acid seemed to be minor.

Later I got never-disappearing generalised aches from all over the body.
They could get worse or milder. But it took years and years before they left.
Diklofenac and large doses of ordinary low-cost painkillers did help somewhat.
High doses of SSRI-medications might have helped. Maybe! But I'm far from sure.

I was treated by a rheumatologist who couldn't diagnose any known illness, although my pains were obvious and unquestionable, tested for fibromyalgia and some other diseases.

Those generalised aches varied, more or less synchronised with fatigue and brain fog.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I have muscle pain. Much less than I used to. I keep it under control with massage (Thai massage in particular makes a world of difference for me). The type of pain you are describing, with tender points is typical of myofascial pain, which is different from fibromyalgia, though often confused. Before I figured this out and discovered that Thai massage would keep the muscle knots at bay if I get it every 2 weeks, I had a lot of this kind of pain. Now I mostly just have other kinds of pain... but getting rid of any kind of pain is a benefit!

For massage you need to find a sensitive, sensible, intuitive therapist who can help get rid of the tension bands and trigger points without hurting you more. They are out there, and they are treasures!
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
How many of you have muscle weakness and muscle pain where it feels like you lifted weights and your muscles are sore? Is it inflammation, lactic acid build up, or what? and does anything work to ease the pain?

If I push it too much I can get 'coat hanger pain' across my shoulders and upper back. It isn't related to muscle use, and rubbing the muscles doesn't help, so I suspect inflammation.

Someone here on PR (I don't remember who,) uses proteolytic enzymes to relieve pain. LDN, and anti-inflammatories such as flax oil and turmeric may also be useful if inflammation is the cause of your pain. There are many natural anti-inflammatories available.
 

RYO

Senior Member
Messages
350
Location
USA
Muscle pain for me has been very difficult to manage. It is very prominent in my legs\hips (postural muscles). I have tried many treatments with little success (too many to list).
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I have muscle pain. Much less than I used to. I keep it under control with massage (Thai massage in particular makes a world of difference for me). The type of pain you are describing, with tender points is typical of myofascial pain, which is different from fibromyalgia, though often confused. Before I figured this out and discovered that Thai massage would keep the muscle knots at bay if I get it every 2 weeks, I had a lot of this kind of pain. Now I mostly just have other kinds of pain... but getting rid of any kind of pain is a benefit!

For massage you need to find a sensitive, sensible, intuitive therapist who can help get rid of the tension bands and trigger points without hurting you more. They are out there, and they are treasures!

I've had this type of pain in my calves (myofascial pain). I did find a massage therapist at one time who took her thumbs and separated the muscle fibers in the knot, and then repeated that by working on another knot. For me it was one of those "pains that hurt so good." I've had many massages and she always stood out in my mind as someone who actually made me better for the long term.

Now I'm curious about Thai massage. I will have to see if anyone at Massage Envy does that.

I learned the most about myofascial pain from books by Dr. Devin Starlanyl. She's a rheumatologist who has fibromyalgia. I don't recall which book was the best, but here are some that she's written:
https://www.amazon.com/s/ref=nb_sb_...d=1YABV65YF90UB&rh=n:283155,k:devin+starlanyl

Myofascial pain brochure:
http://www.fmcmpd.org/TriggerPtBrochure.pdf

Devin Starlanyl's website where she's posted a lot of information - see the links on the left side of the page:
http://www.fmcmpd.org/

Interview:
http://www.prohealth.com/library/showarticle.cfm?libid=21326
 

Dechi

Senior Member
Messages
1,454
Yes, I have permanent muscle weakness. Just chewing is hard, some days. Writing also. Typing at the computer is okay though. But writing with a pen is hard. I used to do those adult color books (forgot the name) for a while but I stopped, it was hurting my finger muscles too much.
 

pattismith

Senior Member
Messages
3,931
hi Azriel,
I too had muscle weakness, muscle pains, heavy arms and legs, twitching muscles, muscle contractions, etc.

The more efficient supplements that works for these conditions for me are:

Calcium, vitamine D, magnesium, high benfotiamin dose, (+ other B vitamins)
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@CFS_for_19_years does it feel like there are tender points on your calves when you push in on them, but not really knots? I have those in my calves and arms, then my back and neck have huge knots on top of knots that I need to really address as well.
I have tender points all over every part of my body, including my calves. And then there ARE the knots (lumps) too. I also have fibromyalgia in addition to ME/CFS.
 

bspg

Plant Queen
Messages
547
Location
USA
The type of pain you are describing, with tender points is typical of myofascial pain, which is different from fibromyalgia, though often confused.

I've often wondered about this as my entire body is tender points, with certain areas much worse than others (hips, sacrum). Those areas can barely be touched without me screaming in pain. I have a dx of fibro but I really believe it's myofascial pain syndrome. I wonder how I could find a doctor who knows the difference...
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I've often wondered about this as my entire body is tender points, with certain areas much worse than others (hips, sacrum). Those areas can barely be touched without me screaming in pain. I have a dx of fibro but I really believe it's myofascial pain syndrome. I wonder how I could find a doctor who knows the difference...

Fibromyalgia and myofascial pain syndrome often coexist. A rheumatologist would be the best kind of doctor to tell if you have myofascial pain syndrome.

http://healthsociety.info/myofascial-pain-syndrome-mps-and-fibromyalgia/

@CFS_for_19_years - what kind of doctor diagnosed your fibromyalgia? I always though fibromyalgia was joint pain, but I never really read up on it, so now I feel like I should get it checked out. Are there treatments for it?

My regular GP diagnosed my fibromyalgia. I don't have pain in my joints - all of the pain is in all of my muscles. Treatments are warm baths, stretching, exercising (if you don't have ME/CFS) and medications such as pregabalin (Lyrica) and duloxetine (Cymbalta).
 
Last edited:
Messages
15
I have recently developed the most debilitating pain, cramps, twitches and burning ache in my thigh muscles. All the individusl muscles are so weak and painful that i am now unable to stand or walk and am wheelchair bound. I've had M.E. for 4 years and never had any leg problems. I also was diagnosed with fibro but that pain is nothing like this. It's really really frightening me and I'm too scared to speak to my doctor as he is so uncaring and i always get the silence on the phone (im unable to visit the surgery) and then just a pathetic answer like i need to rest more! All i do is rest and now I'm immobile!!!

Please if anyone has experienced leg problems to the point of it making you immobile could you message me?

Many thanks
 

pattismith

Senior Member
Messages
3,931
Hi @alice71 , I had the same kind of muscles problems. In my case, it was associatedwith blood lactates peaks. I take a mito Cocktail for several months now, it helps a lot!
 
Last edited:
Messages
15
Hi and thanks so much pattismith, its so unbelievably reassuring to know this is similar to others experiences with M.E. if you dont mind me asking, what do you mean by blood lactates and how did you find that out? Also, what mito cocktail do you have, is that mitochondria by the way?
 

pattismith

Senior Member
Messages
3,931
Hi and thanks so much pattismith, its so unbelievably reassuring to know this is similar to others experiences with M.E. if you dont mind me asking, what do you mean by blood lactates and how did you find that out? Also, what mito cocktail do you have, is that mitochondria by the way?


Several PR members experimented testing their blood lactates levels (fasting, after exercise, after eating...) and found anomalies:

http://forums.phoenixrising.me/inde...-study-to-measure-blood-lactate-levels.40152/

(It means buying a blood lactates tester)

One cause of elevated blood lactates can be a failure of mitochondria function, so supplements that help this function may help. Here more about mito cocktail:


http://www.mitoaction.org/blog/mito-supplement-therapy

you will find on PR all the experimentations members had with all these supplements (doses, forms, etc).:thumbsup:
 
Messages
56
I have muscles pain in my legs ,twitching, cramping and little swollen from inflammation, walking stair is painful I feel like I ran a marathon every day , I do take vimivo- for inflammation and also pain killers helped a lot , just starded the med.