Fibromyalgia and menstrual cycle

[fibroandpmt]

Shamelessly posting here for traffic as I'm at my wits end.

Does anyone find their Fibromyalgia flares up in relation to their menstrual cycle? I find my symptoms are the worst from day 20 (when I roughly ovulate). I feel horrendous and then it eases as my period arrives. It's 10 really shit days of the month. My body feels like it's been run over by a bus several times, painful muscles and joints, extreme fatigue, brain fog etc. It's just so debilitating.

I know some of you may say this is just really bad PMT but the flares can happen at other times of the month too but the flare around day 20 of my cycle is guaranteed.

My rheumatologist says he hears similar from other patients.

Has anyone found anything that helps? I'm taking fish oils, vitamin D, magnesium etc and on painkillers

I've asked about taking the pill maybe to help with hormones and they keep pushing the coil which I'm not keen on. Ideally I don't want to try anything hormonal but don't know what else may help?

Shameful bump

I’ve stopped taking hormonal contraception in the past year and have definitely noticed this in the past 6months or so.
My periods are very regular so I’d never bothered tracking them before but I started because I had been feeling so sore and exhausted and there is a definite correlation with ovulation for me.

The pill definitely did help for me, the combined and mini pills were both helpful.
I’m keen to avoid hormonal contraceptives though as the pill was affecting my mood a lot so right now I’m trying to plan my activities around my menstrual cycle and plan for rest when I know I’ll need it more.

Yes! Fun, isn't it? I would recommend a low-dose pill, which worked well for me for a few years (it seems to have become less effective lately, but I think that's just perimenopause hitting me like a truck.

Are you on Pregabalin? That's worked better for me than anything else.

Hi

I was diagnosed with fibro for 7 years, and definitely noticed I would ‘flare’ from ovulation onwards. Hormone levels normal but I did get some relief from a hormone patch.

I have since found out my fibro was caused by Small Intestinal Bacterial Overgrowth. I would really recommend anyone with fibro or chronic fatigue google this to find out more about it. After 7 years of hell I’m fine after some antibiotic treatment. There are lots of studies out there and really worth a check.

Good luck

Mine is worse when progesterone is higher, but I think it's more related to my hypermobility tbh. Week before period and few days after.

Hi I have CFS so not fibro and hormones definitely play a huge part for me.

I always feel worse around day 5 of my cycle towards the end of my period. For me it was the same (probably a bit worse) when on the pill. It went away completely when I was pregnant. And I had the mirena coil and had a massive relapse, the worst I've ever felt so I had it taken out after a few months. It could be un related though. I think evening primrose oil helps a bit but might just be placebo effect, it feels like I clutch at straws sometimes trying to find something that helps

The pill made everything worse. I eventually had an ablation which has really helped. I still get sore boobs but otherwise it's a lot better. I lost 5st in weight too and found my fibro eased up too.

Thanks for all the responses! I started thinking it was in my head. I've only noticed this since having my second who is 2yo now.

I'm on naproxen as I'm really keen to stay away from painkillers and find other ways to manage it. One of the things putting me off the pill is the potential weight gain, any insight @SewButtons @MarmiteyCrumpets? I'm desperate to lose a bit of weight at the moment (creeping into overweight).

@Buttercup72 can you tell me more about the hormone patch? Interestingly I don't have a spleen and have been on long term antibiotics in the past. It definitely messed my gut up and I wonder if it could've contributed to SIBO. I've had a calprotectic test though and that was fine. I think that's how it's picked up but I will double check.

@Forgottenyeti apologies for the drip feed but I'm also hypemobile. I feel like the pregnancies have made everything worse though

@DrinkFeckArseBrick and @Groovee it's so tough isn't it.

I might try the pill and see what happens. Definitely don't fancy the coil or anything else

My hormone patch is ‘Evra’ and I had to get it initially through a gynaecologist rather than GP.

Antibiotics would definitely put you at risk of SIBO - it was the same for me. Cal protection doesn’t show SIBO, i got a test via Healthpath. It blowing into test tubes so they can measure the gas. Roughly speaking if you have IBS-d, it an excess of hydrogen producing bacteria. If IBS-c, methane producing bacteria.

I got test done privately and took it back to gastro who gave me antibiotics (he’d originally diagnosed me with IBS after my cal protection came back ok).

@frustratedwiththepandemic pill is more progesterone so if it's that it might get worse. Progesterone and pregnancy go together too. Can you tell I'm annoyed with progesterone? 😂

I can't remember how I found out about this link but doctors never mentioned it, and don't realise it can be a problem with contraception.

Someone once told me fibro was the hypermobility asking for help and it does seem to be that when hypermobility is bad the fibro is bad.

@Buttercup72

My hormone patch is ‘Evra’ and I had to get it initially through a gynaecologist rather than GP.

Antibiotics would definitely put you at risk of SIBO - it was the same for me. Cal protection doesn’t show SIBO, i got a test via Healthpath. It blowing into test tubes so they can measure the gas. Roughly speaking if you have IBS-d, it an excess of hydrogen producing bacteria. If IBS-c, methane producing bacteria.

I got test done privately and took it back to gastro who gave me antibiotics (he’d originally diagnosed me with IBS after my cal protection came back ok).

Thanks I will look it up!

[quote Forgottenyeti]@frustratedwiththepandemic pill is more progesterone so if it's that it might get worse. Progesterone and pregnancy go together too. Can you tell I'm annoyed with progesterone? 😂

I can't remember how I found out about this link but doctors never mentioned it, and don't realise it can be a problem with contraception.

Someone once told me fibro was the hypermobility asking for help and it does seem to be that when hypermobility is bad the fibro is bad.[/quote]
So I've had flares / Fibro for last 10
Years after major surgery. It was only after my first pregnancy that I noticed the flares felt worse but that could be the demand of a young child / not resting like I used to. But after my second, I noticed the link to my cycle.

I really need to read up what hormones drop post ovulation as that's when I'm at my worst - is it progesterone? If so then a progesterone pill will help?

[quote Forgottenyeti]@frustratedwiththepandemic pill is more progesterone so if it's that it might get worse. Progesterone and pregnancy go together too. Can you tell I'm annoyed with progesterone? 😂

I can't remember how I found out about this link but doctors never mentioned it, and don't realise it can be a problem with contraception.

Someone once told me fibro was the hypermobility asking for help and it does seem to be that when hypermobility is bad the fibro is bad.[/quote]
I think the hypermobility has potentially got worse after pregnancy, in my hips especially, maybe the demand of pregnancy? So that makes sense. I do need to do strength training but I'm just so exhausted. I had started cycling and got up to 30 mins but everytime I have a flare I start off at a few mins again (or sometimes I have another flare before I've got back into routine). I felt better energy wise but perhaps I should focus on strength training first to build muscle and support the joints

Oestrogen stabilises and progesterone increases laxity. Before your period (and just after) there's loads more progesterone than oestrogen so everything is working harder to keep your joints stable, so more brain fog and fatigue on top of the pain. That's a very not scientific explanation 😬

Yes physios have always told me to focus on exercise that strengthens the muscle. Lots of squats etc. My hips are two of my worst, I find it really hard to not hyper extend them compared to things like knees and elbows. It's difficult when you have fibro too though because of flares. Now I've figured out about hormones it's at least a bit easier to plan not to do things then.

I have similar symptoms but I have endometriosis, which was misdiagnosed as ME/post viral fatigue for years. For me my hormones trigger flare ups. You have my sympathy, really rough symptoms to deal with.

@frustratedwiththepandemic I didn't put on weight after going on the pill. It is a very low dose one though. My feeling is that if it helps manage your energy and pain and makes it easier to exercise, it'll help with staying at a healthy weight.

@Forgottenyeti

Oestrogen stabilises and progesterone increases laxity. Before your period (and just after) there's loads more progesterone than oestrogen so everything is working harder to keep your joints stable, so more brain fog and fatigue on top of the pain. That's a very not scientific explanation 😬

Oh thank you for this! So next question can you get oestrogen based contraceptive pills? I only ever feel the worst in the lead up, never after my period

@Forgottenyeti

Yes physios have always told me to focus on exercise that strengthens the muscle. Lots of squats etc. My hips are two of my worst, I find it really hard to not hyper extend them compared to things like knees and elbows. It's difficult when you have fibro too though because of flares. Now I've figured out about hormones it's at least a bit easier to plan not to do things then.

Makes sense. It's just so hard with 2 little ones (4 and 2) and they also have medical needs

@user1471474462

I have similar symptoms but I have endometriosis, which was misdiagnosed as ME/post viral fatigue for years. For me my hormones trigger flare ups. You have my sympathy, really rough symptoms to deal with.

Interesting,. What other symptoms do you get apart from the ones I mentioned in OP? I did have my hormones tested once and prolactin was slightly high and they questioned pcos but it was normal when they repeated bloods

[quote MarmiteyCrumpets]@frustratedwiththepandemic I didn't put on weight after going on the pill. It is a very low dose one though. My feeling is that if it helps manage your energy and pain and makes it easier to exercise, it'll help with staying at a healthy weight.[/quote]
That's a v good point. Thanks

@Buttercup72

My hormone patch is ‘Evra’ and I had to get it initially through a gynaecologist rather than GP.

Antibiotics would definitely put you at risk of SIBO - it was the same for me. Cal protection doesn’t show SIBO, i got a test via Healthpath. It blowing into test tubes so they can measure the gas. Roughly speaking if you have IBS-d, it an excess of hydrogen producing bacteria. If IBS-c, methane producing bacteria.

I got test done privately and took it back to gastro who gave me antibiotics (he’d originally diagnosed me with IBS after my cal protection came back ok).

I've just been reading on the health plan site. About 7 years ago I had a stool Test and did have some bacterial growth. I had it because I had thrush for 2/3 years which I couldnt shift. I already take saccromyces Boulardi , I saw this as a recommendation In the sample report. Can I ask what antibiotics helped you shift it?

@Groovee

The pill made everything worse. I eventually had an ablation which has really helped. I still get sore boobs but otherwise it's a lot better. I lost 5st in weight too and found my fibro eased up too.

Can I ask which pill made your symptoms worse? Was your flare up also post ovulation ?

Combined pill is both I think? I can't take oestrogen because of a clotting disorder so not tried it.

Urgh quote fail, sorry.