Told fibro but wasnt: Ive found out... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,469 members66,515 posts

Told fibro but wasnt

amberbrown profile image
19 Replies

Ive found out recently for sure that my so called fibromyalgia was a lack of estrogen caused first by the menopause, giving me many debiliating symptoms, and then when I had a hysterectomy it suddenly got far far worse, dangerously so. What worries me is that none of the doctors thought about what was causing my so called asthma and other symptoms and would just tell me to use asthma inhalers, take painkillers for all of the aches and pains or pace myself if I get worn out quickly etc. Just accept it. Even when it became much worse after the total hysterectomy (removal of ovaries !!!!!) they did not connect it. I had to research it all and point it out to them. Am now fine if I take more estrogen or serotonin - 5 htp etc (to the body estrogen and serotonin is the same, same results, estrogen turns into serotonin) and better than ever. But no thanks to them.

Written by
amberbrown profile image
amberbrown
To view profiles and participate in discussions please or .
Read more about...
19 Replies
Cat00 profile image
Cat00

Wow thats terrible although great you've effectively been cured from fibro.

Sandra600 profile image
Sandra600

I have often wondered about the role of oestrogen deficiency in fibromyalgia but I couldn’t take hrt myself as it made my chronic migraines worse. I am glad it has helped you even though you had to find out for yourself.

amberbrown profile image
amberbrown in reply to Sandra600

Maybe you can take serotonin - in a natural form such as 5htp, to the body it is the same, and its what estrogen turns into to help you. Worth a try? Or take estrogen with p.... the other hormone which balances it. Some soya pills will soon tell you and they dont cost much.

Sandra600 profile image
Sandra600 in reply to amberbrown

I had hrt patches which were oestrogen and progesterone. I have thought about trying 5htp but I am on tramadol and rizatriptan so I’m concerned about serotonin syndrome.

Tinacros profile image
Tinacros

I know loads of women diagnosed with Fibro and I can say it is categorically the menopause. I was one of them like you. X

amberbrown profile image
amberbrown in reply to Tinacros

Hi, hope you are ok now.

Gaballetto profile image
Gaballetto

Hah!, Me too. I went into my consultation with a private menopause GP in May with a 20 year long standing diagnosis of fibro, and a month after starting oestrogen patches pretty much all my fatigue, joint and muscle pain, and sleep issues had gone!!

I still get regular strong allergy-like symptoms (sore eyes, sore throat, breathlessness, phlegmy cough, racing skipping heart, and generally feeling 'grotty') in response to most medications, many foods, and recognised allergens like cut grass and mould.

The nurse I consulted with when I was struggling to tolerate some HRT meds suggested I have a 'histamine intolerance' (which I always thought was quackery). Avoidance of most meds and a trial and error approach to avoidance of high histamine foods has led me to 1. getting my life back and 2. losing weight rapidly because the list of foods I can tolerate is turning out to be quite small!

I have had many questions answered this year and the histamine intolerance explains why I very often felt well in the mornings but deteriorated with a racing heart and breathlessness after the first meal of the day.

Now I practice 'intermittent fasting' by not eating till as late as possible in the day, which gives me till about 2 or 3pm to get on with life before I eat. If I could not eat and still survive, I would probably do it.

The hardest thing is completely abstaining from wine, which I always considered to be my 'life blood' 😁

BTW I only cottoned on to my 'fibro' being menopause symptoms when I heard a podcast from the Zoe Health team in which they interviewed Dr Louise Newson on the Zoe podcast. You can watch and listen on youTube - just search for zoe health and nutrition menopause podcast

amberbrown profile image
amberbrown in reply to Gaballetto

Hi, nice to meet you, lovely to meet someone who is a thinker and takes responsibility for their own well being. So many people wait for doctors to do it all for them and are happy to put up with it all in the meantime if the doctors are slow or get it wrong. I had same issue you speak of when I started with serotonin/estrogen - to the body it is the same thing. You can become estrogen dominant which releases and increases your histamine levels, in my case it gave me a blocked ear and nose/very much like hayfever, sneezing etc. You have to take the other hormone too to stop estrogen dominance or take a smaller dose. Once again the doctors will say ah yes it is hay fever/ rhinitis etc whatever, and just give you a nose spray or tell you to buy antihistamines - you can buy them very cheap in chemist and they help with it - but they dont get rid of it because it is a symptom, you need to see to the cause to get rid.

Gaballetto profile image
Gaballetto in reply to amberbrown

Lovely to meet you too amberbrown.

Can you explain a little more about this oestrogen dominant idea? I feel that my histamine symptoms have increased since starting the HRT. I was on oestrogen alone for a couple of months (even though I still have a uterus and should also take progesterone at the same time) because I was reacting very badly to the initial progesterone formulations they started me on so the progesterone supplementation was stop-start till we found one that I am ok with. I tried one dose of testosterone, but no more, because it made me horribly ill. Never again.

Are you saying that an imbalance, with oestrogen too high, may exacerbate histamine symptoms? Can you direct me to any literature?

Unfortunately, I am massively sensitive to the over-the-counter antihistamines and often get worse histamine symptoms from them. The only ones that I am ok with seem to be the formulation of fexofenadine that is prescription only in the UK ( was over-the-counter in Australia). Lucky for me my husband is prescribed them for allergic skin issues and he lets me have one of them occasionally.

I try not to be critical of others just sitting back and going with what the doctors do or don't do, because not everyone has the medical knowledge to know when things haven't been dealt with right and chasing things up usually has to be done by seeing doctors privately, and not everyone can afford that.

amberbrown profile image
amberbrown in reply to Gaballetto

Hi, I can only say how it was for me. I am going to speak to my nurse soon about maybe needing to take pregnenolone too, as although I dont have a womb or ovaries it can help. I cant point you to something , I read hundeds of hours worth of stuff nd have a good memory.

gillian-51 profile image
gillian-51

interesting as at one point I was told that I had virtually no estrogen, I ll ask for a hormone check at my next blood test.

amberbrown profile image
amberbrown in reply to gillian-51

That can take ages. If you take some soya pills for a few days you will know now.

KimiJay profile image
KimiJay

Well done that wisewoman! I think much of it does all boil down to research by oneself in the end if there is time and you can summon enough energy. Menopause indicates it's time for women to take better care of themselves and their own health, so do take time out to relax and enjoy what you have the energy and fitness to enjoy. Keep on doing what you did to get the diagnosis reversed ... but keep in mind that ageing does cramp your style a bit as it creeps on. - If you want to take a break from the serotonin thing ever, you could try CBD oil at night. I've been adding schizandra and Snore and Peace tea at night to that for myself but you will find what suits you . I seem to do better with that right now rather than cherry juice etc. - Delighted to know that someone here has escaped the full horror of the fibrohag!

amberbrown profile image
amberbrown in reply to KimiJay

Hi there, nice to meet you. I will be fine if I stick with estrogen/serotonin and won't need to swerve away or add other things. It also help me with depression, anxiety, mood, memory, not feeling the cold in the middle of summer and having to have an electric blanket and the heating on all year round, very dry skin, metabolism, liver, blood sugar levels and much more. How are you doing?

KimiJay profile image
KimiJay in reply to amberbrown

Thanks for asking. I just survived a two day visit, one night stayover from my (most adorable) granddaughters 8 and 3, while their mum was off for the morning doing a course. Their dad, my son was upstairs making up his working from home hours and needing to focus so we did all girl stuff. - Don't know about them but I had fun. It was quite a haul cleaning and setting up the house and garden the week beforehand to give them lots to do safely though, but the quinine just about helped me avoid the thigh cramps, the cbd got me to sleep and may have helped with some of the physical discomfort. But I get to go to my wonderful chiropractor tomorrow and I've just about caught up with over sixty emails. Hey ho! Not bad for seventy six! Have you had to retire? I was really lucky I didn't really go under with fibro until after I retired because of moving house. Was sixty plus by the time I got my diagnosis. - It shocks me how badly treated by employers, nhs and the government are many of the people who still have to work with fibromyalgia and are robbed of rightful support like pip despite having paid taxes. Hope your symptoms gradually diminish and leave you.

amberbrown profile image
amberbrown in reply to KimiJay

I work on computer - my work is thinking and speaking - so no Ive not had to retire, I would be dead if I could not do that. But before the estrogen my memory was not good, got confused etc. My brain is back to being well. I do a lot of mental exercise and take supplements to help it too. I could easily afford to retire - could have done that years ago - but dont want to. Hope you are well

Midori profile image
Midori in reply to amberbrown

Wow! That is interesting. Fibro hit me at about menopause time, and I didn't take HRT as it wasn't too bad for me, hot flushes was about the limit. Thank you so much for the information.

Cheers, Midori

amberbrown profile image
amberbrown in reply to Midori

hi, you are very welcome, have a nice day

Blu-cat11 profile image
Blu-cat11

Hi all, it is really interesting to hear of your experiences. I have been having fibromyalgia symptoms since an early menopause 16 years ago, but only got diagnosed with fibromyalgia more recently. I am now on HRT (Estrogel and utrogestan) As this isn’t helping I am now trying testosterone under a private menopause doctor. Nearly 5 months in and having increased the dose I’m not any better. I wonder what other experiences women have had of testosterone? The 5htp sounds interesting too.

You may also like...

Just been told I have fibro and doc said it's just an ANNOYANCE like a common cold. HELP!!

My doc told me I'm suffering with fibromyalgia and said it's nothing more than an annoyance like a...

Can I do anything about excessive facial sweating, which I have been told is due to the Fibro?

The act of simply getting dressed, as an example, causes my face to literally drip sweat. The rest...

Fibro?

faith in them helping at the min. After seeing Fibromyalgia on Google, after typing my symptoms...

Fibro with Polimaligia

steroids. however i had a bad reaction to them where they had caused weakness in my legs,...

fibro

doctors just handed out painkillers, I then suffered different side effects with them and in the...