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[CrispyChick]

So, I wanted to refresh this topic from about 5 years ago. There is an old thread and I found it very useful and reassuring to find others in as terrible a place as myself. 

All my tests are clear (there have been so many). The only other option for me is ME/CFS. But there is most definitely a hormonal link.

I feel so ill every min of every day. My main symptoms are:

1) A fluey feeling, like poision running through my body. My back aches with it.
2) motion sickness and nausea
3) dizziness, spinning and ear pressure / pain
4) loss of appetite when at my worst.
5) terrible fatigue
6) lightheaded

Then at times so many other symptoms, which are definitely hormonal, including - extreme mood swings, rage, crying etc. Migraines, indigestion, extreme brain fog, night sweats sometimes, hot flushes more recently.

I'm looking for others that may feel this ill. 

I'm not looking to be told to try HRT - thanks. I've tried everything over the last 7 years, including chemical menopause. All made me worse.

I'm still in peri. Just missed my first period, which corresponds with the new onset hot flushes. I'm 48. But still the underlying ill symptoms plague me - and they've felt worse than ever after missing a period.

Anyone else? X

[Dotty]

Hi CrispyChick…we’ve “spoken” before so I won’t go into detail, but yes everything you describe was me in peri and I could add lots of symptoms to the list 😢.

[CrispyChick]

Thank you dotty. Yes, we have spoken a few times. X

Can I clarify - did you feel poisoned? Flu feeling in your blood constantly? Motion sickness? Generally very very ill - constantly!?

Unfortunately HRT, at this stage, seems to make me worse. 😞

[Dotty]

Yes….i felt dreadfully ill all the time. I had horrendous nausea all day every day and I couldn’t eat. Even lying in bed made me feel ill.

My first symptom was exhaustion. I was totally exhausted and couldn’t do anything. Then the nausea started and the heart palpitations and the insomnia and a horrible internal shaking. There were more random symptoms that were just crazy.

[Asher]

Hi crispy chick,

In peri I actually felt like I was dying from some kind of unknown disease, I had all the symptoms you and dotty had and some.
At its worst I became housebound for six months I couldn’t leave the house because of my severe anxiety and the multiple physical symptoms I had .
I had an early menopause at 36 and it’s took me to get to 51 to finally start to get relief but unfortunately still get some symptoms.
You are not alone in experiencing extreme symptoms I did too I can’t offer you any kind of advice as to how to alleviate the symptoms only lots of understanding and empathy, but I can say after many years of suffering I feel I’m now getting to a better place and better days .
Stay strong I know it feels impossible but those better brighter days will come for you too x

[bombsh3ll]

I don't have all of those symptoms but I live with dysautonomia resulting from a brain injury at 34, and as part of this I do have motion sensitivity, nausea, chronic dizziness and lightheadedness, slow GI transit and impaired thermoregulation.

None of these issues are caused by lack of gonadal hormones in my case, however the lightheadedness and frequent syncope were noticeably exacerbated by menstruation when I lost access to my combined pill.

I have also been helped a lot by androgen replacement with DHEA, which has improved my access to upright posture over and above my pacemaker and fludrocortisone, so there's that.

I also know that a lot of people with ME/CFS have autonomic dysfunction as well.

Regarding whether your symptoms are wholly or partially due to perimenopause - I think it is difficult to tease apart but age of onset is one clue, and did this coincide with any changes in menstrual pattern?

Also did it come on gradually, or was there any specific event or trigger?

Additionally, and I know this hasn't been the case for you, but usually if a person's illness is wholly or largely peri/menopause related, they would typically improve when ovarian hormones are restored.

That said I am convinced a lot of women with a similar cluster of symptoms around their 40's who were previously completely well, are being diagnosed with ME or fibromyalgia and various other "untreatable" conditions when really it is perimenopause.

[Mary G]

Crispy, this is a very long shot but have you had your bilirubin levels tested for Gilbert's Syndrome? 

Gilbert's is hereditary and it often goes unnoticed until the menopause kicks in.  Read up on it and you will recognise a lot of your symptoms and people with Gilbert's have difficulty processing oestrogen.

It's supposed to be a symptomless condition but in my experience, it's far from it.

[CrispyChick]

Thank you ladies. Much appreciated.

Dotty and Asher it is so reassuring to hear your stories. It still doesn't give me a solution, but it's reassuring.

Asher - did you /are you taking HRT??? And it seems most of your issues arose after your early meno. Is that correct???

Thanks Mary - I shall ask my GP about that. I assume I've been tested for everything, but I don't really know! Neurology just tested me for lots of randoms like lupus and lymes. So could be in that batch. I never heard anything, so assume all fine.

Bomb - it all started for me at 41. I stopped the mini pill at 40. Got terrible pms so tried Agnus Castus at high dose. It was amazing, then gave me migraines. I stopped it overnight. 8 weeks later descended into this. So in my head I always assumed I'd destabilised my hormones with the agnus castus.

I do struggle to see how HRT can always help in peri, since I truly believe, if this is hormonal, it's all down to the fluctuations and my sensitivity to them. But we have to remember I got even worse in chemical menopause. So I think it's all my body's immune/nervous system response to changes, not the hormonal levels themselves.

I've never had low estrogen symptoms. My current hot flushes are the first of them. Hence I can see why HRT has never helped.

What I will say is, despite other side affects - migraines, stomach issues etc - I could lose the fluey poison when on certain pills. Surely that suggests it's not ME/CFC but hormonal?

And this is me just trying to find that reassurance by finding others who suffered similar.

Flat out on the sofa today with 'flu'

Xx

[bombsh3ll]

I don't actually think HRT is the best way to manage perimenopause either in many people (although some thrive on it and that's great) as like you say a lot of the symptoms are due to chaotic and fluctuating rather than deficient ovarian hormones.

Personally I prefer to just shut it down and add back a consistent stable daily dose with the pill.

Your history does sound very much like hormones are implicated, I just wish there was a straightforward solution to help you feel better.

[Dotty]

I didn’t get hot flushes till 5 years after the horrific symptoms started.

I wish I could help more  . X

[CrispyChick]

Actually, that is helpful Dotty because that's exactly like me. I'm 7 years in now. I've had sweats off/on about 18 months. Now hot flushes.

And I know my my chemical shut down that I'm a hit flushes girl when my E goes. No sweats in chem meno.

So it is helpful, as it's reassuring. And it explains that it's the fluctuations making us feel so ill before the E declines.

Bomb - I was certainly told by the NHS meno clinic to try every combined pill going. I did. I really did. But I got so many migraines and gastritis, mood swings and you name it. Despite taking pills for years earlier. To be honest, I tried again last year as I was desperate, but I think once my body is 'flared' anything I take just causes even more problems. 

So here I am. 3 months on nothing. Perhaps I'd be feeling a bit more positive if they hadn't stuck me on an antidepressant that made me suicidal. Now coming off that.

It's not been fun!

[Ruthiebell]

Really feel for you. They tried me on an antidepressant instead of HRT being offered initially. I last 7 days before coming off it, made me feel like I’d totally lost my mind, scary. Again others have good experiences so not saying they aren’t helpful if they suit. Feel wobbly today too but the second down teen is being a bit of a pest so that is not helping. I think it’s my resilience to previously normal/ I could handle stuff that has depleted a bit. But then on other days when hormones behave I’m ok again, it’s that crap rollercoaster feeling without the fun bit!  I’ve not watched my eating as much either over the weekend and I’m paying for it. Totally notice the difference in my mood and symptoms with what I eat and drink! I hope things start to settle for you, at least you have an outlet here with nice folks! X

[bombsh3ll]

I can understand you being reluctant to try anything else but have you ever had any form of androgen replacement, or know what your testosterone levels are?

Certainly DHEA has helped me, and anecdotally many women with ME/CFS like symptoms have improved on DHEA and/or testosterone.

Apologies if this is something you have already tried/discounted.

[Asher]

Hi crispy chick ,

All my symptoms began when I hit peri .
I did use hrt for 7 years but in all honesty it made me worse I spent so long trying different types at different doses but unfortunately for me it just didn’t suit
I recently came off hrt altogether been off it for 10 weeks now.
Peri began at 36 but the hot flushes didn’t begin until I was 42 , so I think flushes don’t always come straight away .
I really hope you start to get a break soon, it’s such a long unpleasant journey for so many of us .
Wish I could offer you kind of solution x

[CrispyChick]

Thanks ladies.

Asher that's do interesting about the HRT. I've dabbled a lot over the years. Convectional HRT sent my poision into overdrive then an expensive trip to the Marion Gluck clinic saw me try progesterone only treatment off/on for some time. Bur I could never get better. So much up/down as I tried.

But now on nothing, it's still just as hellish.

How are you feeling now on no HRT??? Do you wish you'd given up sooner?

Yip, my flushes have come later. I assume that's E starting to decline. Did your flushes start nearer the time you hit meno?

Bomb - I did try DHEA through the Marion Gluck clinic. Combined with testosterone. I liked it. I think it made me very calm. But I was also so ill. And wasn't sure what was what. So stopped.

Do you take oral DHEA? Mine was a cream, but I have tablets. I'd love to try it again. But too scared right now. Very interested in what you say about woman with ME/CFC type illness finding dhea helpful.

My testosterone always sat around 0.4 at that time. Interestingly in Jan this year it was 1.22.

But - all my hormones were high in Jan. I wonder if there was some sort of surge after stopping chem meno. Because a month on I feel like I've totally gone the other way. Getting some bloods this week. Be interesting.

Thanks for your support Ruthiebell. It's been an absolutely horrid time. It just keeps going. Unfortunately I never have any good days. And diet seems to play no part for me. When I'm at my worst I stop eating.