Menopause and ME - what's your experience?

No such thing as post menopause, we are in meno until we die.

 

I had just turned 48 when I experienced my first missed period. This hormonal change hit me very hard. I felt weaker physically, more unwell, began experiencing hot flashes that became very severe a few years later. I began having unpleasant side effects to antibiotics.

Not everyone seems to have a rough time of it though. I have a friend with ME and she hasn't had any problem with menopause.

 

Perimenopause symptoms began in my late 30's and menopause hit me at 51. Perimenopause was true hell

 

Thanks Trish, I have met others like me on online forums, but I guess we’re not the usual case. I wish I could have hormone replacement therapy but it made migraines return and I really don’t need them on top of other issues. Still struggling with hot flushes and peripheral neuropathy.

 

The symptoms are so much more than hot flashes and night sweats, I can deal with that. It's the bone crushing fatigue in my legs, insomnia, miserable mood, feeling like I'm on adrenaline 24/7, cramps/nausea with no periods and no patience for anything.

If I didn't have ME I would not be able to work or socialize with these symptoms, I would have to go on HRT.

Why some women hardly get any symptoms while other are debilitated with them is a mystery.

 

I had the bone crushing fatigue for about a year. That was when I started using compounded progesterone cream.

 

I felt highly anxious and started getting night sweats around age 50 and was eventually prescribed HRT. Out of curiosity, I've tried to wean myself off it a number of times over the last 15 years, but the anxiety and hot flushes at night are intolerable.

My GP and I both believe that taking very low dose HRT, long term, in patch form, is a good idea. I realise there will be people who throw up their hands in horror at this, however, the small risks outweigh the quality of life benefits for me.

With a number of pain-related issues to deal with, aside from ME/CFS which I don't disclose to my GP, I will be taking it for the rest of my life.

My ME has ever so slowly got worse with time, but I think the fact that this noticeable deterioration loosely coincided with peri-menopause is a coincidence. I've never noticed any worsening of ME symptoms when I stop HRT, or any change when I start again.

 

Menopause hit me in my 40s. I put early 40s, but I wouldn't swear by that. My doctors thought it was early. I had never had a child or missed a period for any reason. During perimenopause, they came more frequently. I figured I had had as many periods as anyone else by the time I hit menopause. The worst peri/early menopause symptom for me was worsened hypoglycemia. I probably still have it; I have just learned to manage it.

 

It seems to me that the response to the menopause, like so many things in our condition, is both confusing and inconsistent between individuals. We see this in such a range of things, our reaction to inoculations and to infections, alcohol sensitivity, variation in sleep patterns.

I guess that this is also compounded by unconnected variation between people in how they respond to the menopause and some overlap between symptoms of ME and the menopause pause meaning at times it may not be clear what is menopause and what is ME.

It does raise the question, what does this variation tell us about our condition. It may be that the variations becomes entirely understandable when we know what we should be looking at. For example over a number of years I became confused by the variation in my response to exertion; it could be that sitting at the computer caused more of a crash than moving relatively heavy things in the garden. It was only when I realised that I had gradually been developing orthostatic intolerance and up to a certain point being upright triggered PEM quicker than physical exertion, that is the negative effects of being upright stopped me doing things more more quickly than over exertion triggered a crash. Once I was aware of this, that the key variable was time spent upright, the appearant inconsistences entirely made sense.

Do those that experience a change in their ME associated with the menopause get a sense or not that it directly interacting with the ME or if it is an indirect, though potentially cumulative, factor, such as we might see with a cold in someone with such as MND being more disabling than in a healthy person? Presumably in that situation the cummulative impact of the cold and MND is because the person has less 'spare capacity' or resilience to deal with the additional infection even though the impact of both together can be extreme (eg the cold can results a chest infection that in turn can potentionally be fatal). However given that ME occurs more commonly in women it would not be surprising if there could be a direct interaction between ME and the menopause.

It could be if ME does turn out to be several similar diseases that this will explain the variation we see, though, until we have widely used assesment of biomarkers and/or a comprehensive natural history of the condition, it may be impossible to tease out any clear patterns.

Reading everyone's accounts, I did wonder if we ever see a re emergence of ME symptoms at the menopause in people that are in complete remission. For example though my ME had a sudden onset associated with glandular fever (EBV) after several years I believed myself to have completely recovered, until a bad dose of flue triggered a relapse that was worse than the initial presentation. Do we ever see such a pattern associated with the menopause?

 

Perimenopause symptoms frequently are not defined as such, due to lack of knowledge ( also among GP'S). I am 51 and the egg factory shut up shot 2 years ago...but looking back I had Perimeno symptoms in my early 40's. I wish I had known that at the time. Peri symptoms are so varied and there is a cross over with ME symptoms.

There was a urban myth floating around when I was in my 20's that having a baby improved ME. I have always thought this to be the most bonkers advice possible, but my good friend's friend did it and it cured her! BTW: this does not constitute 'Medical Advice' from me!

 

Re Peter's question:

I became ill first time at age 38, think given PVFS diagnosis, probably considered mild (though it didn't feel like that) as limped on at work for 2 years, staged return, lots more sick leave, then went part-time, before giving up work altogether as not coping.

Then started to improve and was functioning pretty well about 5 years post onset and thought I was recovered.

Relapse 2017, 6 1/2 years after last menstrual period.
Now probably lower end moderate, never returned to work after going on sick leave 3 weeks after initial virus, cognitive and orthostatic problems more severe.

No idea if there is any association, just it is worse this time round.

 

Estrogen: A master regulator of bioenergetic systems in the brain and body

"Within the brain, estrogen regulates glucose transport, aerobic glycolysis, and mitochondrial function to generate ATP. ... During menopause, decline in circulating estrogen is coincident with decline in brain bioenergetics and shift towards a metabolically compromised phenotype".

The human brain, despite comprising only 2% of the body’s mass, consumes 20% of the body’s fuel for mitochondrial respiration and ATP generation. Thus the brain is singularly reliant on efficient mitochondrial function, and is at risk for bioenergetic decline if mitochondrial function is impaired. Estrogen has been shown to have beneficial effects on the entire bioenergetic system of the brain from glucose transport into cells to glycolysis, the tricarboxylic citric acid (TCA) cycle, oxidative phosphorylation (OXPHOS), and ATP production (Figure 2) (Brinton, 2008b, 2009).

 

I think it would have been difficult to differentiate the two if one developed ME with gradual onset or later in life.

 

Another question worth asking is did you feel better or worse once through the menopause. I felt better once through the menopause ie better than before the menopause. It was a relief to be free of the monthly added exhaustion of periods, not that I had bad periods, just it would take quite a lot out of me on top of the ME.

 

Menopause early 50's.

I've experienced a significant worsening of my orthostatic symptoms. Orthostatic hypotension. Orthostatic tachycardia. 170 + bpm on stand test, with increase of over 50 bpm when upright. Reduced emotional resilience. Adrenaline surges. Worsening of body temperature regulation.

Osteoporosis also worsening.

M.E. severe and gradually worsening, but orthostatic symptoms further reduced function. Have regained a little ground since taking BB.

 

I used to have low BP but an increased HR on standing, now after menopause and cancer I have high BP. The high BP started with breast cancer (before I was dx'ed) and got worse through chemo. This coincided with menopause.

The perimenopause time was uneventful for me and I barely noticed it. My family members who have been through meno or going though say that it has been easy for them and little in the way of symptoms.

 

I haven't had cancer but developed high BP in 2004/5, about 4/5 years after menopause.