I know the difference between after-workout fatigue and what you feel like after exertion with chronic fatigue. They are very different. With the latter, I knew it was a negative thing that would last sometimes days - which was not normal - especially for light lifting.
It sounds like (and please correct me if I am wrong) you were able to do certain activities involving muscle exertion but knew you would pay a HUGE price in the upcoming days which was totally abnormal compared to your past history of working out and lifting weights?
My case was different in that I had constant muscle weakness, especially in my upper body (arms, neck, lungs) which affected my breathing and my ability to do just about anything with my arms like open a water bottle, turn on faucets in shower, even open my front door or patio door. I just completely lacked muscle strength although it was NEVER as bad in my legs as in my upper body and I do not know why. It was getting so bad that my thyroid doctor said (in 2015) that he was afraid I could end up on a ventilator if it did not plateau which scared the hell out of me.
The muscle weakness has now gone away and I can walk without wheelchair and actually drove my car for the first time today (for about an hour) for the first time since 2014! I can use my arms for all normal activities again (I can open packages, cut vegetables, use a hairdryer again, etc), and I can inhale a full breath down to my diaphragm which I had lost the ability to do. It's like the IVIG & Rituximab have given me back the ability to have normal muscle function (although I do not believe that I will ever be as strong as I was pre-illness when I could carry groceries up three flights of stairs- and I have no expectation of ever reaching that kind of level).
I guess my muscles just "talked to one day" and said I they needed to be used. I lifted a bit and felt fine afterwards. But it's only happened twice over the 4 months of taxing Rituxan - they were pretty isolated incidents.
That is so interesting and I have not experienced that. Even though it has only happened twice so far, do you think it is related to the Ritux?
I'm curious how your improvement took place- was it gradual? Did you have some earlier moments where you had progress but then it receded?
That's a great question and I am really thinking how to explain my answer. My illness had several triggers and the final one was 3 yrs exposure to toxic black mold in prior rental. If we had not moved and gotten rid of all our belongings, I am not sure if I would still be alive today b/c I was having constant anaphylaxis in 2015. So finding the right MCAS meds was the very first step to stop the allergic reactions and then eat (limited) food again.
But I was still extremely ill and could only stand for about 30 seconds without wheelchair. I had no arm strength and required assistance for just about all tasks of daily living. I could not walk, could not open my apt door, could not breath, had severe POTS, etc. I tried many treatments that either did not help or made me worse. It was not until I started high dose IVIG that I noticed things changing.
My MCAS (allergic reactions) went into remission and have not returned in almost two yrs. My overall stamina improved and I was able to do more w/my arms. I had an insane startle reflex that also disappeared. Then my progress seemed to plateau until I began Rituximab (after already doing a full year of IVIG). I noticed after Ritux that things started moving forward again. I had even more arm muscle strength & stamina, and my breathing improved.
And finally more recently, my POTS improved so I can walk without wheelchair (short distances and no stairs) but enough to go out on short errands without the wheelchair which is life-changing. And now today, I drove my car and was able to move the gear shift and parking break with complete ease (and I had lost the ability to do that pre-treatment). I still have POTS and certain motions can trigger an episode but I try to be careful.
These treatments also allowed me to be at hospital every day for almost three months while my mom was dying of cancer (and if she had gotten sick in 2015, I would have had to stay home, and not only could not have helped her, but someone would have had to stay home and help me).
(random question: but did you ever get massages? I often find these help and then other times I find they worsen my symptoms- especially the chronic soreness in my limbs and overall energy).
I do not get massages (only b/c of lack of time and so much else that I need to do) but when I did get them many years ago, I always enjoyed them and found them helpful. I am not sure how they would be now.
