Can anyone please advise me if any re... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Can anyone please advise me if any research has been made into Fibromyalgia pain and Estrogen levels?

Anth14 profile image
30 Replies

It's just my pain seems to get better, when I am on the pill and obviously I know that pain is on it's own cycle, but can fibromyalgia pain be hormone related?

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Anth14
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30 Replies
LisaSnow profile image
LisaSnowFMA UK Volunteer

According to a study carefully done in 8 women, progesterone and testosterone are protective for fibro (which can explain the lower fibro prevalence in male), but estradiol (estrogen) and cortisol were not related (associated) with pain in these patients.

ncbi.nlm.nih.gov/pmc/articl...

Anth14 profile image
Anth14 in reply to LisaSnow

It's really interesting.. I couldn't move my neck fully until I went on the pill after a car accident. I came off the pill and i had the worst time. Now back on it and feeling much better than I was, although also taking Vitamin D. Has anyone done any research into Cortisol and Fibromyalgia?

phlebo123 profile image
phlebo123

Personally I believe that there is some link between fibromyalgia and female hormones.I found that my fibromyalgia symptoms were always worse just before my periods started ( when hormone levels are falling) and my symptoms were less when I was midcycle.

When I become pre menopausal and since I went through the menopause my symptoms really have got worse all the time! I am wondering if I tried taking HRT whether I might experience an improvement?

Anth14 profile image
Anth14 in reply to phlebo123

Thank you for your reply. My fibromyalgia symptoms get worse during my period. I get so tired and my pain is so much worse on it. I am so sorry to hear it has gotten worse since your menopause. I am going to be going through that in the next couple years.

I can't advise you if taking Hrt, you will see an improvement. However i would suggest talking to your doctor about it and asking them if it will help you. Fibromyalgia absolutely sucks though. Hope you are okay xxx

glochessum profile image
glochessum

I am 62 and have just started on HRT a fortnight ago. I did a lot of research first, discussed it with my doctor and he agreed to give it a try. Still early days but over the last couple of days I have felt more energised. I’m still bothered with back pain but feel better in myself.Trying it for a month and if I’m finding it helps I can get it on repeat. Davinia McCall did a program on it a few weeks back that encouraged me to give it a try.

Anth14 profile image
Anth14 in reply to glochessum

Glad Hrt is helping you and you are feeling better in yourself. I wish I could take Hrt. LOL. For me I definitely have a pattern with pain and periods and fibromyalgia.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

If there is a link it is not a simple one as it has been studied. Whether it is something that applies to group of women only perhaps but when you read about HRT/menopause you will hear multiple reports on it being of help or not helping at all. So nothing conclusive and of course the male perspective is another aspect that does not fit easily.

Other hormones are definitely involved "Research has found people with fibromyalgia have abnormally low levels of the hormones serotonin, noradrenaline and dopamine in their brains."

"Some researchers have also suggested that changes in the levels of some other hormones, such as cortisol, which is released when the body is under stress, may contribute to fibromyalgia."

this would play into the more negative experiences that we have under stress.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to desquinn

Just catching up with research news and saw this about chronic pain and sex differences with genes. could be an alternative explanation to hormones or not related at all.

"Lead author Keira Johnston, a doctoral student at the Institute of Health and Wellbeing, University of Glasgow, Scotland, said: “Our study highlights the importance of considering sex as a biological variable and showed subtle but interesting sex differences in the genetics of chronic pain.”

The researchers concluded: “These findings may inform development of novel treatment approaches in future.”"

pharmaceutical-journal.com/...

Anth14 profile image
Anth14 in reply to desquinn

I will have a read later.. Thank you. All i can go on is how I feel in my cycle, which is what a lot of people also have acknowledged.I am off to get my covid jab... Thank you all for your kindness and support and time..

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14

Perhaps availability bias is coming into play. This is why research is important to eliminate our feelings and guesses from the equation.

Anth14 profile image
Anth14 in reply to desquinn

Ha, well I disagree. My pain is worse around time of my period. That is fact that is affecting my day today life.I will keep an open mind but I am not changing my view point for a doctor that has done research on other people. They have not done research on me. I don't know why, but it really does affect me.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14

We all have stressors that make our fibro worse and this is separate from cause. Addressing the stressors can help with the fibro. Dealing with someone's arthritis or AS may make their fibro easier to live with.

hope you find something that works for you.

Anth14 profile image
Anth14 in reply to desquinn

Thank you. What is As?

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply to Anth14

ankylosing spondylitis but just an example of a comorbid condition

Anth14 profile image
Anth14 in reply to desquinn

Thank you for your support and kindness.

glochessum profile image
glochessum

Low oestrogen can cause many symptoms also seen in fibromyalgia, plus oestrogen is a natural muscle relaxer. I have seriously researched this. Being it mostly affects women who’s to know if it’s fibromyalgia or lack of oestrogen causing our problems?

Anth14 profile image
Anth14 in reply to glochessum

That is my view point... However, how does it effect men with fibromyalgia? ..

in reply to Anth14

Hi in part we have a different set up with muscles and nerve/pain receptors because "Naturally" we was designed to be rough n tough to go out Club Dinner drag it back.Build the home and protect it from outsiders so have to be able to absorb pains and injuries till you injure yourself severely then have to Stop!.

So a lot of things with fibro effect us differently so it's more than the Sunday Lunch tucked in below that makes us different!

But ive always said Hormones play a large role in fibro and there was a study going on/done at John Radcliffe Hospital in Oxford on Females with constant pain and Hormones didn't hear result! found out about it when took part in a study held at St Thomas Hospital lab looking into blood lines etc.

I tried one of the Pills called Zoely only took for 2 weeks but found a massive change! Slept better.felt better.lost bladder issues and when had ibs was more one type than whatever? but funny thing is ibs has really been an issue since or not like it was!.

Plus other things changed but somethings returned soon while others not for a long time while others changed.

Yet no one would listen to anything as not on there set agenda!

Anth14 profile image
Anth14 in reply to

Thank you for your support and kindness and time, writing the email. Very interesting. I also have Ibs. It was really very bad but did a cleanse a couple of years back and got it back to normal. Very hard work. Where do you get zoely from?What was the outcome of the study, do you know?

Very interesting.

Anth14 profile image
Anth14 in reply to glochessum

Thank you for your support and kindness. It is very interesting debate.

bookish profile image
bookish

I would say yes to a link between hormones and pain. Certainly the case for me personally. One possible reason is mast cells being activated and higher histamine (which can trigger nerve pain, hence systemic) eg larabriden.com/the-curious-...

Another, possibly more Fibro specific, although not everyone agrees, is COMT. A common genetic SNP that affects the way you clear neurotransmitters and oestrogen and may have a connection to fibro researchgate.net/publicatio...

I have mast cell/histamine issues and also COMT so take your pick! I have had symptoms of fibro from puberty, pain always worse around period along with high histamine symptoms, reacted badly to the pill so stopped. Found many years later (now with multiple autoimmune) that I struggle to clear oestrogen so working on that. To get body working better and both hormone production and clearance optimal you need to get blood sugar under good control, balance essential fats, support liver so that it can clear the 'used' hormones, and get gut microbiome optimal. Blood sugar issues or circulation/oxygen issues like anaemia will make it very hard for your brain to produce the neurotransmitters that it needs to trigger the hypothalamus to start the cascade of hormone production (both sex hormones and thyroid, adrenal etc). Insulin resistance plays havoc and can push down your oestrogen production and increase testosterone in women (reverse in men). Hormones aren't easy to measure due to the cyclical changes so better to try to get the foundations right and see what symptoms you are left with. Taking hormones isn't a great idea as a first step, but may be needed for some as a last step. Best wishes

Anth14 profile image
Anth14 in reply to bookish

Bless you. I hope you are okay? Thank you for your time and kindness in writing this response. I definitely believe that their should be more research.

I actually have started to have B12 injection and I have noticed less flair ups and am certainly much happier when I have them. I also have acupuncture and started Eft for Fibromyalgia. Will be taking Ashwandgha, Vitamin d, Turmeric from the naked pharmacy and use hemp oil cream.. But I am now looking into anti inflammatory diet.

I don't like strong pain killers, i don't like the way they make me feel and it doesn't really do anything for me either.

I just really believe in nature and health alternatives.

So I am also looking at thyroid balance as well as mine is slightly lower.

I hope that you are Okay and definitely believe that there is a link to pain and hormones and think more research is much needed. Xxx

bookish profile image
bookish in reply to Anth14

Thank you for your lovely reply and yes, I'm doing ok thanks. Having a bit of information so that I could do something to help myself made a vast difference in so many ways.

Brilliant about the B12. I treat myself with a liquid methylcobalamin and a small amount of methylfolate which improved my neuro symptoms no end. Great idea to try an anti-inflammatory diet. I have been doing an autoimmune with adjustments for low histamine and low FODMAP after finding that gluten (all grains actually) were not my friend. You may find that until your gut microbiome is more settled and varied that you cannot utilise the turmeric. EFT helps me too. Knowing what I know now, I'd be concentrating on blood sugar first. It has vastly more widespread implications (for thyroid too - brain and therefore whole body) than we realise and can be leaping around like a frog without us being aware. Even minor imbalances are significant and can rapidly become bigger. You diet changes should help. My HbA1c dropped nicely once I went grain free but I recently bought a monitor (dinky little kit with lancets and test strips, under £30 all in) and there were still peaks that I could work on with diet. Getting as many chemicals out of my life as possible so no nasty cleaning products, minimal number of super-clean personal care and no food additives/junk. One little step at a time and we will get there xx

JayCeon profile image
JayCeon in reply to Anth14

IBS & ashwagandha and turmeric? Careful! - I got very strong IBS from both...

Anth14 profile image
Anth14 in reply to JayCeon

I don't use it at the same time 😂..

JayCeon profile image
JayCeon in reply to Anth14

In case you're not joking: Ashwagandha (alone) is a big trigger for my IBSD, and is also a nightshade, if you're sensitive there. And despite turmeric (alone) having been shown as good for IBS, it exacerbates my stomach hyperacidity (like most spicy foods). :-)

Anth14 profile image
Anth14 in reply to JayCeon

I am so sorry to hear this. I hope you are okay?. I am fine taking Turmeric, i also take Ashwandgha for anxiety. No side effects for me. Turmeric helps with stiffness for me and reduction in pain.

JayCeon profile image
JayCeon in reply to Anth14

Thanks for coming back on this :-) And good to hear how these 2 are helping you.

IBSD plus hyperacidity for me meant decades of detective work, and trying things like ashwagandha cause quite big hiccups. GABA has got my stiffness down to almost 0 - so I have found something instead of turmeric... - and improved the Ache. While pacing, symptom-analysis and acupressure keeps getting all the pains down faster and better. A lot of the 80+ treatments I've tried made either my pain & Ache, my IBS or my dry oversensitive skin explode.... So yes, I am OK: It's a lot of hard mental work every day all day & night getting there, but I'm also now getting a good life with quite some activity, 10h/wk work, and not too much overdoing it.

Coming back to your original question, a female doc gave me progesterone & suggested too little testosterone at the beginning, however she was not familiar with fibro & a denier, & it didn't help me.

I definitely think that hormones play a part. My fibromyalgia started with peri-menopause. I’ve been on bioidentical HRT for about three years now and it hasn’t made any difference to my fibromyalgia pain at all.

Hi if you locked your post (Community only)you'll get more replies as otherwise it goes net wide spread by bots!

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