Question from patient

[Dolphin]

I was asked to post this somebody:

Patient with severe ME/CFS had to go down and up stairs while leaning on people and the abdominal muscles became severely overused and won’t recover, it’s been one and a half weeks since this took place.


The muscles cannot be used at all and the slightest usage sets them back. Needless to say moving around in bed or to the toilet is much more difficult without using the abs-they are so bad the patient is afraid to cough, sneeze, clear throat or use vocal cords to talk. The muscle used during deep breaths are so overused. Sleep is disturbed due to discomfort in the muscles.


He rests them as much as possible and takes Whey Protein Isolate, Branch Chained Amino Acids, Lysine, and a few other supplements but there are so signs of recovery after nearly 2 weeks.

The slightest mistake sets the muscles back.


Has anyone heard of this before and what else could be done besides massage and heat packs etc. (stretching may be bad too)

 

[Oberon]

Maybe L-Glutamine (probably already in the Whey) or D-Ribose might help? I think anything thats known to boost ATP or muscle recovery is worth trying. Others will probably have much greater input than I can offer on these.

It's also possible a muscle relaxant may at least help alleviate some of the pain.

 

[alex3619]

I have a long history of muscle issues related to ME, though not this bad in the abs. I have never found an effective treatment other than time and rest. The need for resting the affected muscle may continue for years, not weeks. I am still trying to recover from muscle injuries in the 80s. I found that static strain on muscles is much worse than active strain, so posture is critical. If effective rest positions can be found they may help.

Just today I have had more problems with a muscle in my upper right arm that I damaged from overuse in the 80s. The weakness is always there and I always have to be careful. A year of physio in the late 80s did nothing to help.

I can say my muscle issues improved with time. I am thinking full recovery might be impossible until my ME is in remission.

For local relief I found topical menthol rubs slightly helpful. Heat and cold packs have limited effect, but menthol muscle rubs can be carried around and used as needed. They do not penetrate very far into the muscle however.

 

[me/cfs 27931]

While my symptoms are milder, I find they invariably worsen when I am cold or chilled. Staying comfortably warm at all times helps relieve my abdominal and breathing issues.

I would add that my breathing issues have been substantially relieved since starting low-dose Naltrexone (9mg at bedtime) a year ago. But I continue to have episodic abdominal strain issues, which began with myclonic jerks 38 years ago.

Doctors simply do not appreciate how distressing and painful these conditions can be when they persist. I hope this person finds some symptom relief.

 

[Valentijn]

I was asked to post this somebody:

More rest. A low dose of metformin totaled my shoulders 30 days ago. They've only really recovered in the past week.

The only other thing I can think of is a bit of electrolytes. And maybe coQ10.

 

[PatJ]

A PEMF device might help. From Dr. Pawluk's PEMF information site:
PEMF therapy and sport injury recovery:

Research shows that PEMFs stimulate a process called myosin phosphorylation. This is the process of energy production in muscle. Phosphorylation produces ATP. ATP is essential for cell energy. Depleted ATP creates weak muscles. Workouts and a lot of strenuous muscle activity, deplete ATP. Rest restores ATP, assuming the body has the building blocks necessary to replenish it. PEMFs restore ATP by stimulating myosin phosphorylation.

The mention of ATP is interesting. Maybe the patient is having some kind severe localized lack of ATP in the abdominal muscles?

Also from the article:

All injuries produce swelling in the tissues, as does exercise on its own. Swelling delays the ability of the tissues to be nourished with oxygen and nutrients. This is why you see athletes frequently being treated with ice packs. Ice packs reduce superficial swelling. Swelling or bruising deep in a quadriceps muscle will not respond as well to ice. To effectively ice tissues deep in muscle you would cause freezing of the muscle on the outside thus causing harm to those tissues. The risk versus benefit isn’t acceptable. PEMFs on the other hand penetrate tissues deeply without risk to the superficial tissues to create their benefits. The PEMF’s reduce swelling and speed removal of the blood in a bruise, leading to faster recovery and return to activity, competition or training. Obviously, if treatment is applied early in the injury, recovery will be much faster. Once a lot of the effects of damage are settled into the tissue it takes more energy and longer to heal the tissues.

So maybe PEMF would help to speed muscle recovery, although the effect on a PWME may not be as expected.

 

[hellytheelephant]

Sounds very miserable for them, but 1.5 weeks in ME recovery terms, is not that long for someone severely affected.
Agree about the muscle relaxant if GP will give it.
Agree about keeping warm- my life has been transformed since someone gave me an electric heat pad- which is great as you just switch it on and off as you need-without getting up to make a hottie.

 

[Seven7]

I would say to get tested to make sure there is no muscle damage (CPK i think is called?) , also test for mg and potasium, then if that is clear l-glutamine is my go to for muscle pain.