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[Seascapes]

Hello all

Is there anyone here with ME/CFS, and also in peri? I was diagnosed with ME last year and am really struggling. I’ve been in and out of work, really struggling to keep going and struggling with symptoms all the time. Generally feeling severe fatigue, generalised sick/poisoned feeling, muscle aches, tinnitus, nausea etc. I also suffer a lot with insomnia.

I am also in peri-menopause and my symptoms tend to get worse around the end of my cycle (albeit at this point I haven’t had a period for months) and so my doctors have suggested HRT, but I’m incredibly sensitive to medications and have had bad reactions to contraceptive pill in the past so I’m really nervous about it. I started HRT a few months ago but then stopped (long story, but I felt my ME got much worse, but this could have been due to some other medication I had started at the same time) but then when I stopped I had a really severe ME crash, which took me back to bed for weeks. I am torn about trying again, I do think it could help as I did feel much better for a short time when I started last time, but I’m so scared that it affect my ME again.

I’d love to hear from anyone else also dealing with ME/CFS at the same time as Peri-menopause, it’s such a confusing picture and I’m never really sure whether my symptoms are caused by one or the other or both. I’d be grateful for any thoughts, or experiences, or just to hear from others in the same boat.

[Dotty]

Hi I was incorrectly diagnosed with ME / CFS at the age of 47. I had horrendous symptoms and was housebound. It turned out that all of my symptoms were actually due to peri menopause and once I was on the correct dose of HRT the symptoms disappeared.

[Seascapes]

Hi Dotty, wow that must have been such an incredible relief. Can I ask how you found starting the HRT? Did it help straight away or did you struggle/have to try different types/doses to get it right?

[Emzib0b]

Hi Seascapes,

I was diagnosed with ME/CFS in 2010 and have been in perimenopause for about 3 1/2 years. I always had a worsening of symptoms during PMS and the first few days of my period. When perimenopause started I found it hard to tease apart at times whether it was hormones or ME/CFS making me feel worse. I think when we are dealing with multiple issues they all play off and exacerbate one another!

I had problems with every form of hormonal contraception I’ve tried over the years, but have had no side effects from body-identical HRT. I started with a very low dose and gradually increased over many months. HRT has really helped with the peri symptoms caused by low Oestrogen (hot flushes are gone, mood swings are improved but still happen when my hormones fluctuate). I did get my hopes up that I may see an improvement in fatigue, but in my case, my ME/CFS symptoms have not changed. I still have sleep issues that come in phases but overall it’s better than before HRT and I’m not crashing as a result of emotional upheaval as frequently.

[Dotty]

Hi Seascapes I struggled for many years as no one put the pieces of the jig saw together. I kept being told it was CFS and I went through the CFS clinic treatment but nothing worked. I managed to get some energy back from somewhere after a few years . 3 years later the symptoms emerged again and I was once again almost bedbound. I was very ill. It was then that the penny dropped for me. Yes, I did have to try a few HRTs and I just knew that I needed more oestrogen. I saw a private menopause specialist. He listened to my story and agreed that it wasn’t CFS. He put me on 4 pumps of Oestrogel, Utrogestan and testosterone. Within a month, I was feeling much better.

[Jules]

I have ME, diagnosed after a nasty viral illness in 2001. Definitely not due to menopause.  I'm post menopausal though. 20 years on I rarely get muscle pain but still the fatigue, worse if I overdo things and don't recognise it in time.

[Seascapes]

Thank you all for your kind responses, it’s interesting to hear about different people’s experiences.

I think I will give the HRT another go, but as you mention Emzib0b, I will titrate up very slowly. Can I ask what I think is a stupid question… you mention you are on body-identical HRT which I assume means Utrogestan and Oestrogel? Did you Titrate up the Utrogestan or just the Oestrogel? It’s obviously easy with the Oestrogel as it’s gel, but with Utrogestan being in tablet form, I’m not sure if it’s really possible, I’ve been prescribed two tablets for two weeks of the month. Did you just start straight at that level or did you start with one tablet? I’ve never heard of that being possible.

[Emzib0b]

Thank you all for your kind responses, it’s interesting to hear about different people’s experiences.

I think I will give the HRT another go, but as you mention Emzib0b, I will titrate up very slowly. Can I ask what I think is a stupid question… you mention you are on body-identical HRT which I assume means Utrogestan and Oestrogel? Did you Titrate up the Utrogestan or just the Oestrogel? It’s obviously easy with the Oestrogel as it’s gel, but with Utrogestan being in tablet form, I’m not sure if it’s really possible, I’ve been prescribed two tablets for two weeks of the month. Did you just start straight at that level or did you start with one tablet? I’ve never heard of that being possible.

Hi Seascapes,

Not a stupid question at all, my fault for being vague, so I do apologise!

I’m using Evorel patches and Utrogestan. It was the Oestrogen that I increased gradually. I started on a 25mcg patch, then when I had my first review I increased to 37.5mcg (1.5 x 25mcg patch) instead of going up to 50mcg. I then increased to a 50mcg patch three months later. I took 2 x Utrogestan two weeks on/two weeks off from the start.

[KaraShannon]

I have dreadful fatigue at times, one doctor said it was CFS but most others say it's linked to my hypothyroidism (but if that is properly medicated then why, but that's another story).

In answer to your question, HRT in fact helped with my fatigue but it's mixed.  I'm on the Evorel Sequi, so 2 weeks Estradiol and then 2 weeks Estradiol/Norehisterone (a progesterone) combined. 

I find leading up to the combined phase I actually get some energy and start 'nesting'  exercising, shopping, etc.  But towards the end of the combined phase I literally can't move.  Almost literally. 

At first the HRT only brought benefits, so I'm now wondering if I just need a different type of HRT and that's why the fatigue is worse, rather than it's because of the HRT.  If it's because of it, surely I wouldn't have had those benefits which were a 90% improvement for a good part of the month at first. 

I hope this helps and I hope you find something that works for you.  I don't have an ME diagnosis and probably don't have that but I get crushing fatigue and there's nothing worse, plus people don't understand at all and tend to think it's a choice.  I'll be lying there with all the things I want to do in my head and the day is over before I can do any of them.  So you truly have my sympathy and very best wishes.