Menopause and ME - what's your experience?

I could write a book about my perimenopause!

 

and I developed obvious ME in 1995.

 

Interesting poll from 2019. Hoping for more answers.

 

It might be too late to add to the questions but one thing I noted was that my MCAS got a lot worse during menopaus. ME in itself was pretty much the same, but due to insane MCAS reactions my condition overall worsened severely.

 

I'm in the weird position of not even knowing for sure when I technically went through menopause. My periods stopped dead at age 44—I just never had another one. I'd had hideous endometriosis, so I couldn't believe my luck! I mentioned it to the GP, but she said that it's not unheard-of for women whose periods start unusually late (I was almost 17) also to finish prematurely. Several years went by with nothing happening at all, so I thought hurrah, I've got away with it.

Bit premature as it turned out, because at the usual age of about 52, the hormonal stuff kicked in. And boy did it kick in, I had drenching sweats that soaked my hair and clothes roughly every 10 minutes. I couldn't function at work (I needed towels and several changes of top for every day), I couldn't sleep, and I couldn't even take replacement hormones. The GP saved my bacon by discovering that gabapentin works for some women with severe sweating, and luckily it did for me. Not a cure, but a massive improvement.

20 years after my periods stopped I still get hot flushes, but they're no longer frequent enough to be a big problem. My nan was still getting them when she died just short of age 90, so I'm not hopeful I'll ever completely see the back of them!

 

The hot flashes and night sweats after 7 years are the least of my issues with menopause. When I think things are finally calming down, everything comes back even worse.

I hate the racing heart and not being able to shut my brain down.

I'm thankful I can go out walking in the evenings b/c that does help calm my brain and improves my mood.

 

I'm perimenopausal and my answer to the poll so far would be one that's not available: both.

I started having late/missed periods in 2019. After my first missed periods in November and December 2019, I had a few weeks of functioning better than I had in several years. My IBS that began just after I turned 11 disappeared in September 2019. When my periods returned with train-table regularity in January 2020, I got progressively worse, culminating in the Great Crash of Autumn 2020. My step counts went from 500 steps in May 2020 to 8 steps by mid October. I basically began sliding into very severe ME/CFS. I was painfully full all the time, and thus struggled to get down even 250 calories a day. Couldn't tolerate being even semi-reclined as opposed to fully horizontal. Less stamina for sensory stimuli. Struggled to be verbal. The biology of sleep just seemed to stop on a couple occasions when I went 48 hours without sleep (and hours of strange episodes that felt like I was about to lose consciousness). Just typing those last few sentence about those days is an exercise in traumatic flashbacks.

Then I started skipping periods again. I had 5 or 6 periods in 2021. My step counts averaged about 150-300 throughout the year. My appetite was still blunted though most days I could manage my usual 1200-1500 calories. But during the last week of December, I stopped experiencing PEM from activities that would normally incur it, like visits to the hospital for tests (a HIDA scan and a PCR Covid test) or I would improve remarkably quickly (I was back to baseline two weeks after an endoscopy/colonoscopy --with all the requisite prep involved-- compared to the three weeks it took me to recover from a bog-standard, easy-peasy pelvic exam two months earlier).

I had 3 periods in 2022. My appetite was fully back to normal by the last week of January of that year (just in time to finally have the gut motility study my gastroenterologist ordered! needless to say it was normal by that point). And my step counts began to gradually improve. A week after my period in April, that icky flu-like malaise began to lift at about 9pm on Friday, April 22. By Sunday the 24th, I was out on my balcony repotting plants for the first time in a few years. By the summer, I was having whole weeks were my step counts were above 600, with a handful of days in the 1000-1200 step range. As the autumn approached, so did the bad days--but not as bad as before. Most days were in the 250-500 step range. I could feel that even though I felt worse than in the summer, I still had some reserve if there was an emergency where I had to push myself. Had an emergency happened in October 2020, say a fire in my building (which, in fact happened on December 24 2021 when my next door neighbor's apartment caught fire with a bunch of oxygen tanks inside--another event that should have triggered PEM but didn't), I would not have been able to evacuate—at least not on my own—as I was too weak.

The only other period I had in 2022 was in December on my 50th birthday (the hormone gods/goddesses do have a sense of…what would it be, irony? poetic timing?). I've not had any periods so far this year. I have clusters of days where I feel this sudden surge of energy. Or perhaps it would be more accurate to say that the oppressive flu-like feeling I usually feel is not weighing me down so heavily. This last week was one of those clusters. I had 1000-1150 steps every day for four days.

However...there have been all sorts of weird symptoms that are weird even by the standards of menopause. Sure, there are the hot flushes/night sweats, which come in clusters of weeks with very little sleep followed by a month or more of no flushes. There is insomnia, which is basically ME/CFS sleep issues cranked up several notches. Hair loss. Dry skin, eyes. Acne. Cognitive issues (often in inverse correlation with physical functioning; the better I can function physically, the worse my ability think or even read this forum).

But since entering perimenopause, I’ve been having severe pins and needles in various places throughout my body, predominately on the left side (left face, left arm, left leg). In various muscles I’ve been having something between a fasciculation (which I’ve had for years since ME/CFS really kicked off) and a spasm (the bicep fomoris, tibialis anterior, extensor digitorum longus of my left leg, pectoralis and deltoid of my left arm, trapezius, right latissimus dorsi and possibly more). It feels exactly like a TENS unit is attached to those muscles with zapping sensations and a feeling that the muscle is engaging. At its worst, I can’t, say, bend my left knee nor extend it fully. There is also an intense pressure sensation, as if there is a blood pressure cuff squeezing those muscles. This spring when I started having hot flushes again, it was accompanied by that squeezing sensation, except it was like the cuff was made of broken glass. This was especially prominent in my hands. It was incredibly painful. During the Great Crash of Autumn 2020, I began having this cold-burning numbness in specific locations in my upper body, as if there was dry ice beneath my skin. There are days I just cannot get warm. As the years have past, that cold sensation has turned into something more burning, like a sunburn. But there is no change in color or temperature of my skin. It’s all going on beneath the surface.

And then there are the involuntary muscle movements, especially in my face. During a crash in 2015 I started having what I can only describe as “seizure-like” episodes. I don’t lose consciousness. But the muscles of my face start blinking and scrunching excessively, nodding compulsively, my neck starts twisting toward my right shoulder. I might start rocking back and forth. But the most distressing for me and those with me is that the muscles involved in speech stop working. If I try to power through and answer questions, it makes the whole thing last longer (the episodeds usually last about 3-5 minutes but when I first started having them and kept trying to reassert conscious dominance over my muscles, it could last up to 20-30 minutes). They only happen when I’m crashing.

Now to be sure, these started before I started missing periods. And new conditions can coincide with perimenopause. But I was very reluctant to get a neurological evaluation because one, as they only happened with crashes, the best course of action seemed to be to avoid overexertion rather than try a bunch of medications that were likely to make fatigue worse. Plus, well, there is always the spectre of FND/conversion disorder diagnosis, of going through all the exertion of the various appointments and tests involved only to end up there. However as the symptoms worsened in perimenopause, I finally broke down and did see a neurologist. But the exam, MRIs, and EMG have all been normal. Thankfully those episodes have mellowed out to simply having the intense blinking/scrunching when I’m tired as well as an episodic intense lip pursing (like bruxism of my lips) and certain facial muscles involuntarily engaging (especially the lavator labii). It’s a bit embarrassing but I’ve gotten so used to it now and as I can’t really do much about it, I’ve given up caring one way or the other.

Because I can’t measure anything, I can’t say anything with certainty, but I do have a sense that the symptoms are hormonally-mediated based on worsening along with other symptoms typically associated with hormonal changes: acne, hair loss, hot flushes, change in vaginal discharges. But that’s all I’ve got, just a vague sense or intuition. I suppose I’ll see what happens as I finish riding out perimenopause. I will be talking with my gynecologist about the estradiol patch when I see her next month and if she prescribes it, it will be interesting to see what happens when that gets added to this mix.

 

Michelle, those seizure-like episodes where the muscles in the face and neck can’t be controlled happens to me as well. I used to have them occasionally, especially when I crashed, got a virus or right before getting my period. But during menopaus the episodes got more common and when it was at it’s worst they happened every day. It was a terrible experience. Not being able to speak properly and not being able to control the muscles. They would twist and turn unless I laid still and tried to relax and wait it out.

Since then I have learned that hormonal changes can trigger our mast cells. I also noticed that the episodes came on after I ate certain things, especially food with high amount of histamine. It turned out that I had developed MCAS which caused these insane reacations. After eating only low histamine food and also taking medication against MCAS I felt and was fine, able to control my body and speech. Today, I still have ME and MCAS but the reactions happens rarely. If they come on I use Desloratadin and Ibuprofen, against histamine and prostaglandins respectively.

I can’t be sure it’s the same for you. But since you noticed that the reaction became more common when you entered the perimenopausal period, it might be worth trying out.

 

Thanks for sharing your experience. It's one of those things that because we don't understand the mechanism of action in ME/CFS, it's been difficult for me to know if it's related to that or if it's something else entirely.

I'll talk to my PCP/GP about MCAS. Alas, I cannot take NSAIDS as I'm on blood thinners. Which sucks so damn much.

 

I totally understand. I have gotten the neurological tests as well and genetic tests. But no result. The symptoms are so weird so it was worth looking into though in order to exclude other things.

Too bad NSAIDS isn’t possible for you. From what I understand it’s more likely that prostaglandins are the main issue if the nervous system and muscle cramps are involved. Histamine usually tends to give other reactions, like rashes and such.

Getting hormonal balance might be the key for you though? At least worth looking into, like you mentioned earlier. During the early perimenopausal stage estrogen tends to become higher in relation to progesterone since the levels of progesterone lowers. But later on both of them gets low. You can talk to a gynecologist about the possibility of boosting up the hormones. Since I’m postmenopausal I need both progesterone and estrogen, but what you need for your hormonal balance depends on which stage you are in. Hope you will get the help you need and that it will work out for you!