Old Muscles in New Bodies - Are the Muscles in ME/CFS Aging Rapidly?

[Sushi]

Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down?
Link to Cort's Blog published today: https://www.healthrising.org/blog/2...VkuSCubPMFGcoP8upbf6Zj0voYiM5KeBDOMuQYh-Ur_VM

With the exercise intolerance present, muscles present such an intriguing area for ME/CFS. The authors believe the muscle problems found in ME/CFS look more like aging than anything else.

This could explain the inability of most of us to gain muscle strength as easily as "normals." Before I knew what was wrong with me, I used to ride in a cycling club. Each Spring everyone was out of shape but they quickly regained muscle strength--but not me. It took me about 3 times as long to regain fitness.

Now I take a moderately strenuous pilates class once a week, but it takes a whole week for my muscles to recover whereas the others in the class are ready to exercise again the next day.

 

[mermaid]

Are “Old” Muscles Holding People with Chronic Fatigue Syndrome (ME/CFS) Down?
Link to Cort's Blog published today: https://www.healthrising.org/blog/2...VkuSCubPMFGcoP8upbf6Zj0voYiM5KeBDOMuQYh-Ur_VM

This could explain the inability of most of us to gain muscle strength as easily as "normals." Before I knew what was wrong with me, I used to ride in a cycling club. Each Spring everyone was out of shape but they quickly regained muscle strength--but not me. It took me about 3 times as long to regain fitness.

Now I take a moderately strenuous pilates class once a week, but it takes a whole week for my muscles to recover whereas the others in the class are ready to exercise again the next day.

Yes, that is my experience at the moment @Sushi . In fact I have this very week made the sad decision to leave my dance/theatre group because I can no longer sustain the pain I get afterwards which is so slow to recover. I have been part of the group for 12 years off and on (the 'offs' are when I have taken ME breaks of a year or so).

The curious thing is that during that time, muscle pain has not been my main problem. I have had phases where it may have flared up after going outside my 'envelope' but on the whole my issues have been more to do with general stamina, or my immune system issues, or migraines, or stomach pain. Over the past few years I have tried to tackle each of these and had some good success. As for the muscle pain issues, they disappeared entirely when I began to use T3/Liothyronine only for my hypothyroidism which I have now done for around 6 years.

However about a year back I had had 3 eye operations in 18 months, 2 of them very serious and stressful (detached retina), but not done with a GA. The last one affected me very badly and I relapsed both mentally and physically for a while, though not seriously so. I have spent this year trying to recover my previous energy and it's been difficult, but more recently my energy feels better, and my immune system, but my muscle pain issues are as bad, if not worse than ever. It's possible that the herbs I am taking are boosting the other 2 issues, but not able to help my muscle pain. I am very puzzled to understand why it has become such an issue for me, though it's within reasonable limits as long as I don't do such strenuous tasks as dancing (it was for over an hour but at my own pace, and with a group of people with mixed disabilities, though none others with ME).

 

[Sing]

@mermaid I am sorry you have had so much trouble both with your eyes and in struggling to still be part of your dance/theatre group. I imagine that is tremendously important to you and a big loss! I respect you too for trying to hold on as long as you could.

I had a downturn in my condition after a standard hip replacement. All of a sudden hypotension became a daily, sometimes really disabling problem. I had had some autonomic problems before the surgery but that tipped over the cart.

Since what we have is a systemic problem, any significant stress on any part might conceivably result in a worsening in some other part. We have a non-linear problem which is centrally orchestrated, as I understand it, so there can be surprise consequences from a new challange or stress, like a surgery.

 

[mermaid]

@mermaid I am sorry you have had so much trouble both with your eyes and in struggling to still be part of your dance/theatre group. I imagine that is tremendously important to you and a big loss! I respect you too for trying to hold on as long as you could.

I had a downturn in my condition after a standard hip replacement. All of a sudden hypotension became a daily, sometimes really disabling problem. I had had some autonomic problems before the surgery but that tipped over the cart.

Since what we have is a systemic problem, any significant stress on any part might conceivably result in a worsening in some other part. We have a non-linear problem which is centrally orchestrated, as I understand it, so there can be surprise consequences from a new challange or stress, like a surgery.

Thank you for your kind words @Sing. It is interesting but I have been in touch with another ME sufferer just yesterday who was also more disabled with issues after some surgery. In my case I already suffer from anxiety and have always managed the issues around this with medical stuff by having a sedative which they are normally happy to give. This eye surgeon however said that patients can suddenly move if they drift into sleep and then awaken, and he found it too risky. Maybe he had some bad experiences with this as other surgeons were fine with this.

I have had 5 eye surgeries now and he was the only surgeon like this. He also scared me badly from the outset as he even refused me a general anaesthetic instead as the hospital was under black alert (ie not enough beds for emergencies) and he threatened to send me to another place if I objected rather than operate there and then. This would have put my sight at risk as it's a 9 hour round trip, by train, and the last time I went there they delayed my treatment as they were also too busy. However I believe he was also under huge stress at the time, and I have a friend who knows him personally and I believe he had time off sick with stress at one point in the past. At the end of the day he saved my sight so I can forgive him the rest, but it was very hard to deal with afterwards.

On the bright side, I have been volunteering with a charity shop for 3 years, putting donated books online to sell. It's interesting work and I love it. My colleague there has just moved away, so about a month ago I was suddenly left pretty much alone to do this job, and I have decided to take the bull by the horns and do more hours on this and it helps to ease the pain a bit over the dancing loss. I also am actually enjoying the extra responsibility and the Deputy Manager has taken over most of the job that I like the least (posting the items off and the admin involved).

The lovely person who heads up the dance/theatre group has written me a very kind email too, and discussed ways that I can still be in touch with them all, so I do feel better about it all than I did.

 

[Hopeful2021]

Ha...Yes, it would be nice if we could actually do this in a nice logical order but I guess it is inherently messy isn't it and with all these hypotheses swirling it's particularly messy in ME/CFS.

@HowToEscape?
Have you ever had a muscle biopsy?
I was willing for about 2 years.
I do think that the brain signals to connective tissue/nervous system mechanisms and to muscles is greatly harmed and thwarted by this disease.
As I bring more and more patterns back to life, I'm often sadly astonished by how deeply those patterns and workings were affected.
The good news is they can be brought back. I'm not in time duration into my rehab to know if they stay on or disappear again. I feel like a game of Jenga in motion and a super slow motion mudslide. It's definitely euphoric to have some pattern returned, but it frightens me to the bone to see the enemy I was dealing with. it can be also very easy to be thoroughly disappointed and extremely upset..... it's taken much practice and sheer will to look on the brighter side. And to keep uncovering and rehabilitating my patterns.... almost daily and often many times a day.