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[Asher]

Hi crispy chick ,

The hot flushes started when I started missing periods , they ramped up as I started to move into meno , when I was on hrt it did stop the flushes but everything else didn’t improve then I was dealing with so many side effects and never knowing is this a side effect or meno or is the dose too low , too high I just got so fed up with the constant stress of it all and other than the hot flushes going I felt like complete crap everyday .
I do wish I’d stopped sooner, off it I feel much better, the flushes are back but only a few here and there nothing I can’t handle. I think now I’m post menopause things have calmed down and I’m no longer dealing with the wild fluctuations.

I too was like you I never had any good days it was just nothing but one symptom after another, raging anxiety and feeling like there was no relief from this hell , but now I look back and think what the hell happened there , never thought I would ever feel well again, but fingers crossed and hoping it lasts I feel the best I have in 15 years .

[CrispyChick]

I'm soooo pleased for you Asher. 

And you gave me hope. X

So, basically you've felt the best you have in 15 years after stopping the HRT?! Just shows us eh.

I really don't know what to do next. I'm so bad physically just now. It's unbearable. Mentally I'm a bit better since reducing the AD. Yet they want me to try another.

After going and looking at my testosterone results yesterday, I think I'm seriously thinking I had a massive surge of all hormones on stopping the chem meno and now I'm bottoming out.

So all that change will be causing more carnage. It's so awful. Feel so so ill.

[Dotty]

Hi CrispyChick I’ve just got my diary out that I kept when I was very ill. The symptoms I had were very long . Here’s what I wrote….exhausted, ill, no energy, nausea, can’t eat, stomach feels full even though I haven’t eaten, cold and hot flushes, dizzy, feel faint, woozy, can’t concentrate, heart palpitations, disoriented, shaky, groggy, morning anxiety, insomnia, internal shaking, muscle twitches in arms at night, burning pain in forearms at night, very weak, crying ….

It was awful…does any of that resonate with you ? xxx

[CrispyChick]

It really does resonate with me Dotty. Thank you for doing that. It is kind of nice to see others had similar symptoms.

The ones I don't have are stomach fullness (although had terrible stomach issues off/on), heart palps, insomnia, muscle twitches and burning pain. Yay!

I have all the rest. Plus others though - dreadful ear pressure and pain, tingling/sore scalp ABC hair, migraines, Jose pressure, indigestion. The list goes on...

I'm still having the dreadful poison feeling though. Also terrible body flu every day and awful achy back.  I'd class that as separate to the other stuff. And that's the question mark over ME/CFS I guess.

I can see I posted years ago, post a covid experience about a terrible achy back. Makes me wonder.

[bombsh3ll]

Hi crispy,

Regarding the DHEA, I take 25mg sublingual daily, life extension brand. This increased my free T from virtually zero to the top quartile, and has noticeably reduced presyncope and improved my access to standing (although nowhere near to what someone in a typical body has).

I first heard of DHEA from people in the ME/CFS community, but didn't look into it at that time because they had a different condition with a different etiology to me.

I became interested in it a few years later after reading about testosterone helping people with dysautonomia - I am on the combined pill for menstrual suppression which is also incredibly valuable to me and there is no safety data for testosterone alongside the pill, whereas there is for DHEA, and the cost of testosterone is also prohibitive, so I chose DHEA.

I may try testosterone in the future when I am postmenopausal and on MHT.

Also I just wanted to pick up on the "poisoned feeling" you describe - whilst I haven't experienced this myself, I have come across many with ME/CFS using virtually identical words to describe their experience.

[rferdi]

Hi Crispychick, to answer your question yes, absolutely. I've asked myself this so many times, because I've felt so incredibly ill and unwell so many times, and especially over the past almost 3 years, which is when my symptoms worsened a lot. It came to a point where the rarity was to feel well, to feel like before all this started.

My symptoms were many, many, many... too many to list here. The scariest ones being a variety of heart palpitations, dizziness, internal shaking/vibration, tingling hands and feet which become legs and arms and eventually total numbness, and a feeling of being poisoned as well at my worst, a difficult to describe feeling but horrible, which fortunately didn't happen all the time though often enough to make me feel I was dying. I've never had a hot flash however. Of course I've been to many doctors and had all kinds of testing done to rule out other problems (I thought I had a serious illness of some kind).

So I started my HRT journey in April last year and symptoms have improved but not disappeared just yet, I think it's because I still need to find my dose, so that's what I'm working on, unfortunately I have to go slowly because I happen to be very sensitive to any hormones.

Some days I feel almost normal again, some days not so much, and then there's 2 or 3 days a month or so where I feel just absolutely awful and I can barely function (like yesterday, for example, I had all my symptoms all day plus terrible nausea in the evening, which thankfully ended up going away after 2 sprays of Lenzetto). But for now I can't say I'm back to feeling well again, not even most of the time.

I think I'm still perimenopausal (age 52), at least I was last year before I began HRT. My FSH is quite high at 44 but I'd say I must be in the last throes of peri, and I'm guessing that's why my estrogen must be doing really huge ups and downs, hence some of the very bad and very good days? I don't know. I find this to be really difficult to navigate to be honest.

Anyway I hope this is helpful, you're definitely not alone in this.

[Asher]

I'm soooo pleased for you Asher. 

And you gave me hope. X

So, basically you've felt the best you have in 15 years after stopping the HRT?! Just shows us eh.

I really don't know what to do next. I'm so bad physically just now. It's unbearable. Mentally I'm a bit better since reducing the AD. Yet they want me to try another.

After going and looking at my testosterone results yesterday, I think I'm seriously thinking I had a massive surge of all hormones on stopping the chem meno and now I'm bottoming out.

So all that change will be causing more carnage. It's so awful. Feel so so ill.

Hi crispy chick
I’m so pleased I gave you some hope , but I’m sorry to hear how unwell you
feel , I know just how difficult this is it’s so hard to know what to do to get relief hopefully some of the suggestions the other ladies have mentioned will help you find some kind of solution.
It’s just so bloody hard to get through this hell and being able to see any end to it , but it will come , I hope it’s sooner rather than later , honestly wish I could offer you a solution to make you feel better.

What dotty wrote is so helpful, seeing it written like that shows us we aren’t alone in these strange and unpleasant symptoms.
I used to keep a diary and that could have literally been written by me , I think seeing what others experienced definitely helps us and seeing that they improve is comforting, it does give hope .
So stay strong it’s tough but you too will get to a place where things are so much better.
Wishing you all the best x

[Dotty]

Reading these posts makes me quite emotional as I’ve never really met or spoken to anyone who suffered like I did. It’s just so awful what we go through, especially in my case, where doctors told me I was depressed ! Yes, I was depressed but only because I felt so ill.

Sending hugs out to you all xxx

[Asher]

I agree Dotty , it’s so sad to see just how much women suffer , I too have never met anyone that suffered like me.

How are you doing today crispy chick , hoping you are ok x

[CrispyChick]

Thanks ladies.

It means a lot to hear your stories 

I've also been speaking to Itwillpass - the original author if the first 'can peri make me feel this ill' thread. And she's finally found some help - with the mirena coil and E. Food for thought.

I'm not good at the moment. Unfortunately got a toothache too so had emergency dental appointment this morning. Which I could good with had I bot felt I was dying on the way there and whilst there:

Head swimming, woozy
Extreme lightheaded / fainty feeling.
Nauseous
Extreme brain fog.
Just general ill feeling

I decided on the way home, I need to try something else. I cannot live feeling this ill. The doctors want me to try another AD (the last one made me suicidal) bur they are not my answer!

I've taken 4 days of pregabalin. But going to drop it again to ensure it's not causing stomach issues.

Yes I'm always crying, but because I'm so fed up of feeling this ill and rough.

I'm off work. Can no longer do anything. And now I realise I cannot go to a morning appointment. Where does it end?

So. What options do i have??? Bear in mind I've already tried chem meno. 

I've just had a blood test, so be interesting to see given my missed period. But previously, whilst feeling like this, E levels have always been fine.

I need stability. Would mirena give me this? I'm seriously considering it. But I know levongestral in a pill jills my stomach.

Also I just wanted to pick up on the "poisoned feeling" you describe - whilst I haven't experienced this myself, I have come across many with ME/CFS using virtually identical words to describe their experience.

Absolutely bomb. I felt like I found my clan when I joined a ME/CFC FB group recently. They talk of poison.

However, so are the ladies on this thread  and there have been episodes of less poison for me when on the mini pill. Stability???!

It doesn't work now. 😔

I'm really struggling to understand why my body makes me feel so ill. 

Rferdi - I'm sorry you were in this position too. May I ask what hrt you find is helping? X

[Lclegg002]

I’ve been on this forum for a while but never posted. I’ve also seen a lot of your posts Crispy chick which resonate 100% with me. I have been very unwell mentally and physically for over two years now and despite various HRT doses and types I am no better. My journey/hell started with severe irrational anxiety and insomnia and I was put on utrogestan only as my private GP thought I was Estrogen dominant. This made me feel like my body was made of lead and I felt so unwell. Next Estrogen was introduced very slowly but my anxiety seemed to get worse and when I finally got to 3 pumps I was walking round the house at 2am with anxiety like I’ve never felt before. I was then put on desogestrel which did help for a few months and I was also back on Estrogen and was managing pretty well on 3 pumps however this then all changed and I was taken off it, given mirena and went through another year of utter hell because the mirena wasn’t switching off my cycle and I was having severe fluctuations. I have now been on Slynd for 3 months (with mirena still in situ)) but no HRT and am probably the best I will get although I am still feeling so unwell with severe fatigue every day, I feel drugged at my worst, muscle pain, head pressure, no appetite, low mood and anxiety. I have gone from being a social, fun loving, gym addict to a shell of a woman with constant illness, exhaustion, negativity and desperation. Some days I just want to take a pill and never wake up. I feel that I have exhausted all options and fear losing my husband, family and friends as I have nothing to give anymore and am just trying to get through the days. I feel for you and all the other ladies who are going through it or have been though it as it’s complete and utter torture and so unfair

[ToriiJ]

Lclegg002 welcome to the forum. I don’t post as often as I should on here but I read lots. CrispyChick and everyone else who is suffering you are my people. I’m 52 and have been suffering for around 4 years but since hitting my fifties it has been hell.

I’ve had depression since my twenties on and off but since hitting menopause it has been the worse time of my life. I had a week of feeling quite stable recently and thought maybe my hormones are settling but then out of nowhere everything has hit me again. Nausea, fatigue and the severe blackness where I just feel despair at times. I feel I let my family down every day as I don’t function how I used to or how I want to. It really is so unfair that we have to suffer like this.

I’ve tried different kinds of HRT and now on progesterone only, which sometimes I think it helps and sometimes not. I also don’t understand as my last period was in 2021 so I am post menopausal but I can literally feel my hormones fluctuating physically. I feel like I have a bug most days.

I used to get up and go for a run early mornings and always into fitness, I stopped running almost a year ago as it was making me feel mentally worse.

I just wanted to post to say I can so relate to all of you and it’s just so damn unfair. A lot of the time I feel menopause is killing me. This forum is amazing and it’s so nice to not feel alone.

[CrispyChick]

Wow LCkegg.  I'm right there with you. Xxx

This is pure torture. Yes, I've posted a lot.  so if my posts resonate with you - we must feel similar.

My god - you've hit the nail on the head!!!! It's stopping the fluctuations that's necessary, not adding in extra E. Although why I felt so so ill in chemical menopause is a mystery. My gut feeling is it was a 'massive' change!

Ok. So you've tried all the shutting down fluctuating hormone techniques. I've tried desogestral - no longer shuts me down. It used to. And I tried Slynd in May and I got worse and worse. 

Ive never had a Mirena. I'm scared of it. But I'm wondering if I need to try?! Although, obvs it didn't work for you.

I'm thinking a Mirena can not be as bad as chem meno. But with my body, who knows.

I just don't think I can continue like this.

The drugged feeling is a good description. My brain fog (if that's what it is) can, at times be so severe (it is today) that I don't feel safe to drive. Yes. I feel drugged.

I 100% understand how you feel about losing everything. I've lost my life over the last 7 years. This year specifically I'm losing my job. I too feel i'll lose my husband and beautiful children as I have absolutely nothing to offer anyone. Ever.

If this is all hormones, I don't understand how our bodies cannot cope with it. 

Thank you for posting.  I appreciate it.

Are you still peri? X

[Dotty]

Reading your last post reminded me of some other things….I didn’t drive for 8 months as I just couldn’t trust myself to concentrate. I had to resign from my job . I was housebound for months.

I can also say I felt useless and that i was letting everyone down. xx

[CrispyChick]

Yes. Exactly where I'm at Dotty. That trip to the dentist this morning was carnage. 

Now, my mood has slumped and I'm in a depressive state. It's never ending.

But you did find an end Dotty. You are hope. 

I think I'll have to try the mirena. Scared stiff. But I can't live in this hell.

Thanks for posting Torri. I'm so sorry you're suffering too. Especially as post meno as I'm still living in hope that meno helps me. But I think fluctuations do continue for quite a while. It's worrying.

How much progesterone do you take? I don't tolerate utrogestan. But I have dabbled with bhrt creams, until my system went absolutely bonkers and I couldn't tolerate anything. 🙈