I am both sorry, and yet at the same time, reassured, to read that other women are having this problem. At least we are in good company. I was beginning to wonder if there may be some terrible new condition affecting me. I haven't been on this forum for a while, and just came back today upon googling "CFS/ME worse after menopause."
I am 54, was diagnosed with CFIDS in 1992, 26 years ago. As described in previous posts and blog, my disease went almost completely into remission thanks to holistic and herbal medicine, especially after I discontinued mainstream treatments (antibiotics for the frequent infections). Over the years I've had my ups and downs, e.g. had a severe flareup after exposure to Black Mold, good days and bad days, but up until recently I was quite strong, even ripped, and on a good day, in better shape than most "normal" people my age.
A couple of years ago I became perimenopausal with weight gain, abdominal bloating, very heavy periods with clots and anemia (suspicion of fibroids), irritability, anxiety, hot flashes and insomnia. About a year ago I began using NOW bioidentical progesterone cream, which helped a lot although the insomnia was bad. I could fall asleep pretty easily, but would wake up 3-4 hours later and not be able to get back to sleep! It was maddening. I need at least 9-10 hours to keep my immunity strong.
I was so exhausted I could barely work (my SSDI was denied back in the 1990s on the basis that, "In Florida you're not Disabled if you can still talk on the phone," which is my current first job, working as a Spiritual Advisor for a Famous Psychic Company whose name cannot be revealed on social media for contractual reasons. I have recently acquired a second job as a writer in order to pay the bills). I began using CBD, which really helped with the insomnia, although ultimately I have found that medical MJ, in the form of cannabutter, works better than anything else.
Well, my LMP was 234 days ago, hurray! It's so nice not to be losing blood. Also, ever since my period stopped, the extra pounds I'd been carrying around the last few years melted away effortlessly. Almost too easily, but hey, I'm not complaining! It's wonderful to be thin again. I felt like I was walking around in a fat lady's body. Only problem is, the weight loss has been accompanied by 2 other phenomena: loss of muscle mass and frequent bowel movements - food just goes right through me. In retrospect, I had this symptom when first diagnosed.
In addition, the fibromyalgia-like pain has gotten much worse, like it was in the beginning. Fortunately the medical MJ helps considerably, but I can only take it before bed, not while I am at work. Also I feel weak, trembly and light-headed like I did back then. Everything is difficult just like it was at first. Taking a shower is strenuous.
Another peculiar thing, I've been battling a Demodex infestation of the face and scalp. Self-diagnosed via observation of life cycle pattern, resistance to usual acne meds (I have never had acne), moderate response to tea tree oil and topical diatomaceous earth, and impressive immediate resolution with ivermectin. In retrospect, I also had this when first diagnosed, but at that time my doctor had referred to the painful red lesions as "viral exanthema," probably coxsackie, in his opinion (which was his favorite theory re: CFIDS). I've taken the first 2 doses per a research protocol I read about and it has cleared up 95% but I've lost so much hair I am nearly bald on the top of my scalp.
Anyway - when I was first diagnosed with CFIDS, before I lost my job due to using up all my sick days, I was struggling to walk up the stairs and heard coworkers whisper, "Wow, Jamie looks like an old lady!" Now I've become that old lady. I am supposed to start my new writing job, in addition to the phone counseling, tomorrow. I hope I will be able to do it. My house is filthy. I was planning to clean the floor tonight but after pulling up weeds, working on my organic veggie garden and wrestling my horses to do their hooves yesterday and today (my days "off"), I am completely exhausted.
So yeah, ladies, if your CFS/ME has gotten worse since beginning menopause, you're not alone. Join the club.