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[CrispyChick]

Looks like I'm headed down this route after a long 7 year battle without any answers.

If anyone has this, I'd love to hear from you. Symptoms, what flares you, anything that helps.

How peri and meno impact it. 

Thanks x

[bombsh3ll]

I am so sorry you are facing this diagnosis.

Whilst I have no personal experience, I have interacted with a lot of ME/CFS patients over the years as many of them also suffer from dysautonomia, which I have as a result of a brain injury, so I have some insight into that world.

Funnily enough the topic of menopause or perimenopause was virtually never mentioned - however I have not been active on those forums for some time as my quality of life was massively improved after getting a spinal blood patch and a pacemaker.

This may be very different now that there is much more awareness generally about menopause than there was just a few years ago.

I also think there is far more scientific interest in the condition now as it became difficult to deny when millions of people developed it en masse after contracting COVID.

[Dotty]

Hi I was diagnosed with ME / CFS when I became very ill at the age of 48. Nobody mentioned menopause. I struggled on for about 5 years and then had another relapse. At this point I suddenly realised that all of my horrific symptoms were due to oestrogen deficiency and I had been mis diagnosed with ME / CFS.

[CrispyChick]

Thanks both.

Unfortunately for me I've exhausted all hormonal avenues and chemical menopause confirmed it is not my hormones making me feel this ill. They are playing a part in some symptoms, but they're not the root cause.

Indeed my estrogen has been pretty high at times over the years.

But, just out of interest Dotty - what were your symptoms? And at what age did you hit meno itself?

[Dotty]

Hi CrispyChick….my problems started when I was 47. I was suddenly, out of the blue, hit with total exhaustion. I literally couldn’t do anything. Then the other symptoms started over the next few months…..insomnia, constant nausea, heart palpitations, no appetite, couldn’t eat, crying spells, muscle aches, headaches, anxiety, brain fog,  …. Just a general feeling of malaise and feeling dreadful. Doctors didn’t know what was wrong with me! At this point there was no sign of any hot flushes. I had to resign from my job and didn’t work for 4 years. I went through all the treatments for ME / CFS, but I never felt that I fitted the bill as I never experienced boom and bust.  There was no pattern to my exhaustion.

I somehow managed to get back to being able to lead a semi normal life and returned to work.  During this time the night sweats started and then hot flushes during the day.  I thought that I’d got ME / CFS and menopause symptoms.

At the age of 53 and 3 years post menopause, the horrendous symptoms started again and the penny dropped that all of the symptoms were due to menopause! I started HRT and gradually, very gradually got my symptoms under control. However, I feel that I’ve been left with a form of PTSD and the fear of returning to where  I was is always with me.

Sorry for the essay….

[CrispyChick]

That's ok. It's helpful.

My symptoms have been going on for 7 years now. And nothing has changed from the original symptoms, although I'm now getting a lot of hot flushes, especially this month. I'm nearly 49 now.

Interesting - so your symptoms started in peri? Then u got some control back - and went through to post meno during this phase? Then they ramped back up again?  Have I got that right?

In which case, they were probably not solely due to low E. Mine have certainly never been due to low E. I think it's probably dropping now, hence the flushes etc.

I totally understand about the PTSD. I feel like that after my horrific 7 years, and especially after the chem meno. I'm now struggling with mental health issues on top.

General malaise and dreadfulness is exactly what I feel. All day. Every day.

Did you ever try HRT when in peri?  It just makes me worse.

Interesting what you say about boom or bust. I am too trying to identify that. My symptoms feel like they are there every day. Is that what you felt?

[Dotty]

Hi yes my symptoms started in what I now understand to have been peri menopause. It took me about 4 years to get to a stage where I could go back to work ( don’t ask me why this happened as I have no idea ) but I was nowhere near being back to normal. My last period was when I was 50 and then the horrific symptoms hit me again at 53.

No I didn’t try HRT during peri as nobody suggested it was menopause . One GP thought it may be menopause but didn’t believe in HRT. I had to work it out for myself.

Yes, my symptoms were there every day, all day . Some days were better than others but they didn’t relate to what I did .

Within a few months of being on the right HRT, symptoms disappeared that I hadn’t even thought were menopause. My GP wouldn’t believe that my horrendous symptoms were due to menopause and I was tested for everything under the sun. I kept telling her that I just felt dreadful all the time. One GP told me that I needed to go and get a life and shake myself out of it !

I saw a private specialist who was wonderful and he assured me that everything I was telling him was due to menopause and that I wasn’t going mad.

I’ve been on HRT now for 7 years.

[CrispyChick]

Thanks Dotty.

I know we've spoken before.

I certainly know some of my symptoms are peri - massive mood swings, severe pms, anxiety,, crying all the time (kinda new). Hot flushes have started. Night sweats.

When I was in chem meno I had massive flushes and extreme joint pain. Before I added HRT.

But, for me, I'm still getting the same awful fatigue and poison feelings all the time. I feel so ill. All day, every day. 7 years. It gets worse when I try hormones, herbs, anti depressants - so the thing is it's nervous system sensitivity / immune issues - which would be ME. 

When in chem meno it ramped up even more, both without hormones and with adequate hrt (which took my joint pain away). This side of me was worse than ever. 

So I think it probably is ME.   

[bombsh3ll]

Have you ever had any kind of androgen replacement crispy?

One common thread that was mentioned from time to time in the ME community was DHEA. It's a prohormone so it shouldn't make you sick - it gets converted into E and T in your body.

People seemed to find it helpful, however I only became interested in androgens after reading a small case series of patients with dysautonomia being helped by testosterone, and lo and behold it has made a noticeable difference even on top of my fludrocortisone and pacemaker.

I think Dotty's experience is sadly quite common as many mid-life women are being diagnosed with things like ME and fibromyalgia when some or all of it is related to menopause.

This probably occurs because doctors without any menopause training perceive menopause as something that is beyond trivial, so it just doesn't compute when the individual in front of them is clearly very sick and can't function.

In my opinion ME should only be diagnosed after other treatable conditions including peri/menopause have been excluded and/or optimally treated.

[CrispyChick]

Yes, thanks Bomb. I now believe all other options, including peri, have been excluded for me. I truly thought chem meno and add back hrt was my answer. Made me worse than ever. 

Dhea. Yes, I have tried that. I 'think' it made me very calm, which, considering I am now struggling with mood and anxiety, has crossed my mind.

It was given to me as a cream combined with testosterone when I was under the Marion Gluck clinic. But I was also trying progesterone at exactly the same time and something made me very very ill.

I stopped the dhea quite quickly. But the terrible ill stuff carried on with the progesterone. So it was probably that. But, given my hormonal trials, I'm incredibly scared of trialling hormones of any sort right now. But it is one that sticks in my mind.

I'm aware plenty of woman with ME can take hrt. But it simply makes all my ill symptoms worse. I think my system is extremely oversensitised so I'm kind of stuck. 

[Dotty]

Hi CrispyChick….its really horrible feeling so ill all the time. I’ve been there  . When I was diagnosed with ME / CFS I was referred to a CFS clinic through the NHS.  That was about the only thing that the NHS could offer me. I also underwent a course of CBT through the NHS.

[CrispyChick]

Thanks Dotty.

Yeah, I know there's a clinic here. But it's just about pacing and managing it. I know that  .  There's no other help. But it's been 7 years with no other help either. So it's kinda all I've got.

It might make it easier to go back to work with a formal diagnosis too. 

Did you find the CBT useful?

[Dotty]

No …CBT didn’t help me ! It was all about boom and bust and that wasn’t me….i never really boomed, just felt dreadful all the time !

[Kathleen]

Hello ladies.

Some time ago I read that fibromyalgia may be caused by inflammation and is possibly an auto immune condition. Unfortunately I can't remember any more details but it may be a subject worth researching.

I am on a medium dose of Sandrena gel and Utrogestan but I continue to have daily episodes of tiredness and tearfulness along with other mood changes plus vaginal dryness.   I realise my situation is different to the experiences mentioned on this thread but I can relate a little and I do sympathise.

Wishing you all well and sending hugs.


K.

[bombsh3ll]

Hi Kathleen,

The fact that you have vaginal dryness is an indicator that your systemic estradiol level is low.

Whilst not everyone with ME or fibromyalgia can be helped with gonadal hormones, I would be hopeful that you potentially do have scope for improvement and would suggest reviewing your estradiol therapy.

Testosterone is also anecdotally very beneficial for mood and fibromyalgia like symptoms, and whilst one anecdote isn't evidence, when thousands of people are independently reporting the same experience there is usually something in it, even if the "libido only" contingent have their eyes closed and their fingers in their ears looking the other way!