Coming off HRT: Hi everyone ☺️ happy... - Fibromyalgia Acti...

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Coming off HRT

Pony240852 profile image
13 Replies

Hi everyone ☺️ happy new year!

I went on HRT patches a year ago to see if that helped with my pain (pre-diagnosis of fibromyalgia) but it has done nothing for my pain levels and I was wanting to come off them to see if it made any difference, plus I am an intermittent faster and this naturally aligns my hormones. I didnt have any other symptoms of perimenopause apart from pain. Has anyone had experience with HRT? The only thing I'm worried about that i read was that hormone fluctuations can affect pain, but my pain just gets worse each day anyway. Can I just stop HRT or would I be best staying on it?

Many thanks

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Pony240852
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13 Replies
KimiJay profile image
KimiJay

I gave it up in the end but it's still a very personal thing. Menopause was not much fun and I have always wondered if it kick-started the slide into fibro. Menopause does pass though ... eventually!

Southport-beach profile image
Southport-beach

My doctor started me on it at 50. Initially in pill form which helped with my horrendous hot sweats. A different doctor years later moved me onto patches with the new "body identical" oestrogen. (I had a hysterectomy at 47 so it's virtually impossible for me to get HRT with progesterone on the NHS.) I was still getting sweats and other symptoms. It turns out that I wasn't absorbing the hormone through my skin from the patches. I was then given a gel to apply once/twice a day. I seem to absorb this a lot better as six months on the hot flushes and night sweats have vanished, I feel better in myself, I'm sleeping better and I've noticed a significant decrease in my pain levels. I was in the process of reducing my work hours but I don't need to now!

It may be, if you are definitely starting with the menopause, that you aren't absorbing the hormones adequately from the patches. The gel might be worth a try.

Pony240852 profile image
Pony240852 in reply toSouthport-beach

I can certainly try. Yes I don't have any negative effects and I feel that it is helping with my skin too. Thank you

Loobielu profile image
Loobielu

Hiya, this is a particularly interesting question to me! First of all, I didn't absorb from the patches either like Southport beach. This is surprising, very common. I went onto estrogel and this solved the issue. BUT I'm not convinced it's helped much with my fibro symptoms. The next dilemma is whether to stay on HRT 🤔. If we stop then our hormones will go out of wack and possibly take 3 months of hell to settle, along with possibly erratic heavy bleeding and what then if it was actually helping our fibro symptoms more than we thought and our fibro pain increases. What if we have to go back onto HRT and go through at least 3 months of rubbish settling in 😏. Also HRT is supposed to minimise getting other nasty stuff like heart disease, stroke and dementia. For me, the HRT isn't causing anything negative so I'm going to keep going even though I don't know if it's actually helping with anything. If you haven't had a blood test recently to check your estrogen levels I would recommend having this. Best of luck with what ever you decide, shout if I can help with any other possibly useless advice 😂 x

Pony240852 profile image
Pony240852 in reply toLoobielu

Yes this is what I'm afraid off lol what if it is helping and then it makes things worse coming off it? Yes I'm not having any negative effects so I will have a think about it. It is a low dose too. The birth control pill has much more hormones and I had the implant for 15 years, I would just have stayed on that, but it ran out during lock down and I wasn't in a relationship so I was like what's the point in getting a new one. I was fine coming off that, in fact I felt better about myself. But I didn't have fibromyalgia then 😕 one shall stay on it for now and see 😉 thank you x

Loobielu profile image
Loobielu

You're welcome ☺️. Funny enough my daughter came off the implant last year and felt better in herself too. She now has the mirena coil and getting on well with that. Who would be a woman hey 😤. All the best x

Scotland49 profile image
Scotland49

I have been on HRT believe or not, 27 years! During lockdown, there was a possibility of a heart issue, so I just stopped taking it! Big mistake, for the first time in my life, I was diagnosed with a general anxiety disorder it was so bad, I couldn't leave the house. The doctor I spoke I spoke to originally did not advice me to taper!!!!!!.

Pony240852 profile image
Pony240852 in reply toScotland49

Yes its bad as when I spoke to my GP she i could just stop, which I know I shouldn't. I think once I can get my pain under control I will just stay on it. I will be getting my appointment with Integrated Care services in the next couple of months so hopefully they can help, they are apparently better than the pain management.team as I don't want to take painkillers or antidepressants for pain and they know more about fibromyalgia,.so fingers crossed. I've been really sore with this cold.weather

Jaynefox profile image
Jaynefox

I’m on hrt patch around 10 years now don’t help with pain but take a ways menopause symptoms.

smiile profile image
smiile

I went on HRT patches because my oestrogen was tested and low. Doc said it may help with my Fibromyalgia symptoms but I didn’t really see a difference so after maybe 12 months came off it cold turkey. Bad mistake ! Massive headaches….Then a year later tried it again, still no difference so came off it as I was 50 by then and had read it has more side effects from 50 onwards. This time I withdrew gradually cutting patches down over a month. No side effects at all! Good luck 🤞🏼

Pony240852 profile image
Pony240852 in reply tosmiile

Yes i think cutting the patches in half would be best. How long did you do that for?

smiile profile image
smiile

I think for about 2 weeks. The doc didn’t recommend it but a menopause forum did and it worked for me. Good luck x

Pony240852 profile image
Pony240852 in reply tosmiile

Yes it seems quite a mixed bag of reactions to coming off it. I suppose I won't know until I try and I will just have to accept that it may or may not aggravate it and deal with it lol xxx

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