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[Dorothy Gale]

Hello everyone! (Sorry this will be a usual long first post...bear with if possible)


I've been a member of this forum for several years since I started noticing my first few peri symptoms aged around 45. Just irregular periods, thinning hair etc. Nothing of any major impact. 


Im now 49. I suffer from M.E (30 years) but managed a good life considering and was happy. Lovely home, life and man.


 However, I got covid in Feb 2023 and have never felt the same since or ever recovered back to how I felt pre covid.


Then a few months ago the perimenopause kicked in VERY severely and completely blindsided me. Night sweats, panic attacks, crippling anxiety (always suffered from anxiety but never ever on this scale) 7 months since last period...now just get browny discharge every so often....but the worst feeling was that I felt I wasn't in my own mind. Like my brain wasn't there. I just don't feel like me. It's very distressing feeling. Hard to explain but like a derealisation or out of body/mind feeling?


I was already in a very bad place being so ill with covid so this arrival was just horrific for me and I didn't cope well...and it's got much much worse ever since, definitely made worse by my fear and anxiety of how ill I am now with all this...


I didn't know whether to post on here as I am very complex with my health issues and not your regular healthy 'normal' woman who finds herself coping with perimenopause at a certain age. So it's hard to unpick what could be going on...but thought maybe a tiny possibility that someone else on here may have M.E/covid/peri?*long shot 😆 


I've read so many posts on here over the years from hundreds of terrified, desperate women...frankly, it's scared me to death...so to stop myself spiralling I came off reading others stories but find myself back here recently as I know my current hellish health MUST be peri.


I'm bedridden since covid and require full time care from my amazing partner. I struggle doing anything that requiresany physicalor mental strength so even holding my phone is exhausting. Writing this post is so hard as I'm so exhausted. I was incapacitated alot before covid with my M.E but always had better times when I would be really well and able to be out n about and enjoying life.......those days now are well and truly gone 😢 


Now, pain has become an issue. I've always had a bit of muscle pain with my M.E but totally copeable. Now EVERYTHING hurts so bad. Every muscle, joint and fibre of my being. I feel 100 years old and never ever felt so bad. It's like my entire body is seizing up. I feel like the Tin man in need of his oil can! Its really distressing me as I'm not sleeping as hips so sore and I just hurt in my neck, shoulders, back, hips, thighs, legs.....its utterly miserable but onto of already being so ill from my M.E and covid....I literally feel I'm dying....


I'm terrified. Literally terrified.


Had all the tests. Bloods etc. Docs not much help. I was put on everol sequi but I lasted 2 days before my health anxiety and a huge panic attack of possible side effects or even if this was right for me......made me rip the patch off! (Having read soooo many posts on here over the years of women in terrible states due to their HRT...I was terrified to take it as I react so badly to most medication as highly sensitive and intolerant) I just couldn't handle the minefield of HRT and being more ill.


Been offered the usual AD meds etc but I too scared to take as they make me so ill with side effects. I'm intolerant to even supplements which I knowcare so important. But I try n take and spend lots of money but they make me so sick, upset tummy etc.


So....I lie here now, every day, more ill than I've ever been, feeling like I'm going slowly mad....and can't see any way out. I know I need support but I'm so scared of meds ...due to all past experience of massive bad reactions..I can't get out to go to appointments...I'm sedentary due to ME and all the things a woman needs to do in perimenopause eg exercise, keeping moving, etc I can't do so I'm inly gonna get worse, right?


I'm grieving the happy girl I was last year. I felt brilliant. We'd just moved to our dream home in the countryside. Then since February and covid and now perimenopause....I feel like that girl has died and ill never get her back. When I look a photos of me last year, it's like I'm looking at a stranger....I don't know who she is?.....


I appreciate like everyone else, you won't be able to say much to help....


I'm just really frightened how ill ever feel like me again or get well..as I'm fighting so much...a triple whammy of illness...ME, covid and menopause and having only one of these is hard enough...they all cause crushing fatigue, pain, anxiety, brain fog.....they are all impacting each other...

I knew where I was at when I was just dealing with M.E. I felt like me. I had happy well times and actually, didn't realise just how good life was.


Thanks for reading. I know it all sounds very negative. I am naturally a negative person but now I feel more low than ever. I was such a happy girl too who loved life.......

Is there any light to see? Hope?

Apologies if I don't immediately reply to any responses as energies are low.

Love Dorothy xxx

[3_claire_3]

Hi Dorothy, I'm not here to give advice on peri (I'm just starting out on that journey myself) - or covid (I haven't had it) - but M.E. now there's something I know about.  I'm so sorry to hear what you're going through, but so glad you have an amazing and supportive partner.

I suffered with M.E. for about 20 years, when they eventually decided that's what I had, as you'll know it's not a quick diagnosis and depending on your doctors if it's diagnosed at all.   During my time with M.E. I was working a stressful job which wasn't helping me physically or mentally and nobody understood as M.E. was seen as being lazy.

I was made redundant just before Covid took hold and the UK shut down, so with almost a year at home and finding a better job, four years have now passed and I am feeling so much better in myself on the M.E. side of things - peri symptoms are just niggling at the moment and I'm starting on patches very soon.  I do still get the odd days where I just need to do nothing, sleep, stare out the window for a couple hours, but I'd say my M.E. is under control for the most part.

All that being said, if you ever want to vent on the M.E. side of things I'm happy to listen.  I know there are plenty of lovely ladies here who can help on the menopause side of things.

Take care 

[meno-mel]

I'm sorry you're having such a hard time Dorothy, you need a light at the end of the tunnel, I wish I could give you one!

I don't have ME, but I am diagnosed with a condition with fatigue as a main symptom. The reason I wasn't diagnosed with ME is because that must be compared with a better time, before you had ME, to be diagnosed. Whereas I've had fatigue all my life, I was a lazy child never wanting to get up for anything no matter how excited my siblings were as they ran everywhere and I was treated for low absorption of iron as well.

As I read your post I kept thinking, "tibolone would help her".

I'm trying to get it for myself but I bleed too much so I'm not allowed it atm. It is an HRT and a mild steroid that gives a bit of energy into the equation because it is a balance of all three main hormones, not just two, so it has a testosterone type effect on energy levels and sex drive as well as protecting your bones and heart and reducing hot flushes.

It's normally given to women who don't tolerate progesterone well, but I think anyone needing a lift from fatigue and hormone problems should try tibolone for sure. I know someone who was able to stop her antidepressants after taking tibolone for a few months, it cheered her up.

[Kathleen]

Hello Dorothy Gale.

I am so sorry to hear about your health problems and my heart goes out to you.

I don't have any experience or advice to offer but there is a YouTube channel that might interest you. The channel comes from a man called Ged Medinger who has been very active in the long COVID community. Obviously he hasn't suffered from Meno symptoms but one of his many subscribers or contributers may have.
Apologies if you are already aware of this excellent resource but I thought it was worth a mention.

I truly hope that you find some solutions soon.

Wishing you well and sending hugs.

K.

[SarahT]

Dorothy,

I don't have any major advice. Reading your post I am wondering just what medical support you are being given in relation to the M.E?
I have no experience 're covid, and understand your anxiety regarding medication. So the three major debilitating illnesses have a huge impact on your life.
I assume you have contacted  any M.E forums or support groups? My understanding was that M.E can be helped with extremely monitored forms of pysio. And I totally get that right now, even holding a phone is exhausting. I had CFS over 30 years ago when it was almost entirely dismissed as being just in the mind. Some days I would make a drink and be too fatigued to lift the cup to drink it.Somehow I recovered after 5 years.

As you have seen from these replies, others on here so have M.E and are peri as well. gain, I know each person suffers different severity in M.E, but this may give you a little support from others who can understand.

I so wish I could help more, I too send you a hug

[Peri2022]

So sorry you’ve had such a rough time. Just popping on to say that my severe peri symptoms started during the week I had Covid and just continued from there. Took me ages to learn that Covid directly affects receptors in the ovaries…I think many of us have suffered new or worsened hormonal symptoms after Covid.

I too abandoned HRT initially after just a few weeks because of sensitivity and panic attacks, I think I started on too high a dose and was already incredibly dysregulated anyway. A few months later my depression got so awful that I restarted HRT on half the dose and the improvement was almost immediate. I worked my way up to 50mcg Estradot very gradually.

I’m just offering my experience for comparison - I can’t say what’s right for you but please do use this forum for advice and support, we all need it in this frustrating and often lonely journey!

[Ermin2trude]

Oh Dorothy,

Please have a massive virtual hug from me. And then another one…

I contracted MRSA in hospital in my 30’s and that led onto being diagnosed with CFS. Like you I really can’t tolerate medication, my body is way too sensitive. So I ditched everything and had acupuncture, plus a good linseed oil supplement. Slowly, slowly things improved and I was leading a relatively normal and very happy life. I was also diagnosed with coeliac disease and have allergies to potatoes, tomatoes, peppers, aubergines, dairy. This diagnosis wasn’t holistic, it was at the hospital courtesy of the NHS.

Now I’m in my 50’s and perimenopausal. I was doing ok on a low dose of HRT until I caught Covid a year ago and then the wheels fell off big time. I don’t know what Covid has done to me, but I’m not right. Sometimes I think it’s switched off any progesterone I may have had. The HRT is definitely making everything worse. I was diagnosed with long Covid last November. Having a diagnosis doesn’t equal any kind of cure. I am absolutely not the happy person with a lovely life that I was pre Covid.

So I am currently weaning myself off HRT. Amongst other things HRT has blessed me with ovarian cysts, fibroids, an enlarged uterus and the unpleasantness of a hysteroscopy. Against my better judgement, the gynaecologist fitted a Mirena during the hysteroscopy which is now missing in action and has caused a lot of other problems. I really can’t handle the antibiotics but have to take them for the pelvic inflammatory disease  courtesy of the Mirena. It’s utterly miserable. I’m awaiting a complex coil removal operation.

So when the Mirena is removed, I will be ditching HRT and heading back to an acupuncturist and the linseed oil supplement. Anything has to be an improvement on this.

I mentioned above the allergies to potatoes etc above and coeliac disease. These foods are inflammatory and exacerbated the pain with CFS. I don’t know if you consume them? A friend of mine with ME was told to eliminate them from her diet, along with dairy and gluten last year, and she is making great strides in her recovery. So much so that she has taken up cold water therapy……I try but can still only do 60 seconds in a cold shower. It does help though.

I hope you get some treatment and can see a way forward soon. It’s hard. Really hard. But you’ve done it once. You can do it again….trust your body and your instincts…..

Another huge hug,
Love Ermin x

[Dorothy Gale]

Thank you all who have given your time to reply and show support and care.

I appreciate it very much xx

[WishIdknownsooner]

Hello
Oh goodness, what a time you’ve had! I can’t comment on ME, but I’ll add what others have said. Covid kicked off peri for me, and each vaccine and a second dose of covid ramped things up a notch too.
But for me, HRT has really helped. So don’t be afraid to try if that’s what you want to do. I’m feeling so much more energised now. Not like I used to be, but better. And I can sleep through the night again, which must help too. I can think more clearly and some low level vaginal atrophy symptoms have cleared up.
Best wishes to you x