Low mood link to period before/during flare - thought... - NRAS

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Low mood link to period before/during flare - thoughts anyone?

Monkeysmum profile image
49 Replies

Since I’ve been on biologics (c 3 years) my RA symptoms have improved but I still experience a flare up in my symptoms 1-2 times a month which lasts for several days before ebbing away.

I’ve noticed that before the pain actually arrives, I seem to suddenly be hit by a feeling of intense fatigue/weakness (worse than the usual day to day!) and a low mood where I find myself getting upset by something that I would normally just be able to shake off. I go to bed feeling somewhat downhearted, wake up in the morning and BAM the pain has arrived and I am in a flare! Recently, it dawned on me that it is very similar to the low mood I have often experienced the day before my period arrives - I wonder why I am feeling low, and then lo and behold the next day I start my period and think, ah that was why I got upset yesterday! Which got me wondering could there be a chemical / hormonal link between the low mood and the subsequent flare?

Interested in whether anyone else has experienced low mood as a ‘warning’ of impending flare, and whether those of you with more scientific brains than me have any theories as to why this might be?!

Just random thoughts on an ouchy Saturday! 😜

49 Replies
Amnesiac3637 profile image
Amnesiac3637

I’ll just say yes to all that………

Monkeysmum profile image
Monkeysmum in reply to Amnesiac3637

👍

Pippy25 profile image
Pippy25

Oh bless you Monkeysmum and sending some gentle breeze of hugs to you.All I can say is aren't our bodies complex machines at the best of times and when you have RD & friends all kinds of spanners are thrown into the mix, including hormones.

I can only speak from my experience with ongoing thyroid issues that I am having but as I have fluctuated from over to under, back to normal, under then normal again (well for the moment) that I have also experienced feeling intense fatigue, low mood and weepiness. When taking the Levothyroxine my joints have been so painful and flare, I had to stop taking it 6 weeks ago as my levels went back to normal and was ill as I had too much thyroxine in my body. I did wonder myself if there was a connection with the fluctuation in my TSH (Thyroid Stimulating Hormone) if had this brought on these symptoms. Although being older than your good self I can't relate it to periods anymore and pretty much got through the menopause unscathed, so can't say it was that. I hope you can get to the source of why you experience these feelings and symptoms. Take care xx

Monkeysmum profile image
Monkeysmum in reply to Pippy25

Thanks for the hugs Pippy. I’m so sorry to hear you have been having problems with your thyroid- you needed that like a hole in the head didn’t you?! 🤦‍♀️ I hope that they can get the level of levothyroxine correct for you and that it improves your symptoms. Hugs back to you 🤗

Jeppy profile image
Jeppy in reply to Pippy25

hi. I've just seen this. I too get the flares now and again and do feel even though have no periods now that there are still fluctuations in hormone levels. Like your old body clock so,to,speak 😳😁

I'm currently experiencing the joys of peri menopause 🥴 and hormones have all sorts of affects on my arthritis for sure.

I have absolutely no scientific evidence for this but I think alot of rhematology is educated guessing sometimes ! So I'm totally a believer in hormones having an affect on our joints etc.

When I'm having my period I get alot more flares (along with injuries ie torn tendons, stretched ligaments) plus I'm crying SO much more than I ever did, cried today because my husband wasn't driving fast enough 🙄 but I digress lol.

Sorry you are flaring so often, maybe stress might be a big factor too ? Hope things improve for you.

Monkeysmum profile image
Monkeysmum in reply to Marionfromhappydays

Thanks for your reply M, and for the smile as always. I’m more likely to be crying that my husband is driving too fast to be honest - and his car has these slippy leather seats that send me flying from one side to the other! Feels like I’m in a pinball machine! 🤣🤦🏼‍♀️

I’ve no idea if I’m in perimenopause as have had no periods since put on progesterone only pill to help with anemia, but I guess I could well be. Interesting what you say about your symptoms being worse when you have your period though. I guess there must be some sort of link with hormones given that many women find their RA goes into remission when they are pregnant?

Could defo be a link to stress too, but that one is tricky to solve. 🤯

Hope things are Ok with you, how are things going with your Dad? Xx

Happy5 profile image
Happy5 in reply to Marionfromhappydays

ugh sending 🤗

Sheila_G profile image
Sheila_G

Absolutely. I know for sure that I am going to have a flare when I feel like that, so much so that I change my arrangements for that week because of my mood knowing I won't be great after it.

Monkeysmum profile image
Monkeysmum in reply to Sheila_G

Thanks for letting me know I’m not the only one Sheila! Like you say, if I learn to recognise the low mood more in future, perhaps the flare will come as less of a nasty surprise the next day.

Sheila_G profile image
Sheila_G in reply to Monkeysmum

Yes. That's true. It does have a positive side in that you are forewarned.

Jeppy profile image
Jeppy in reply to Sheila_G

hi. Do you still have periods pls. I too,get flares but no,periods and feel I still have fluctuations going on. I just want to understand as I feel the same that I need to accept these flares and rest up a few days

Mmrr profile image
Mmrr

And it's a yes from me too.I know only too well that when I get very fatigued and sometimes go into a very long overnight sleep that a flare is about to hit me.

Monkeysmum profile image
Monkeysmum in reply to Mmrr

It’s strange isn’t it Mmrr, how it comes before the pain itself. Now it has dawned on me though perhaps I will be less hard on myself about the low mood as normally I find myself thinking things like ‘pull yourself together’ ‘why are you letting this get to you’ etc! 🤦🏼‍♀️

Mmrr profile image
Mmrr in reply to Monkeysmum

I've learned over the 5 plus years of living with RA that I need to be gentle with myself. I've learned to say no, lost a few 'friends' along the way, but hey I've got a smaller but truer network now.

Monkeysmum profile image
Monkeysmum in reply to Mmrr

Ah, but you’ve gained us lot instead (sorry about that 😂😂!)

Mmrr profile image
Mmrr in reply to Monkeysmum

😍

Jeppy profile image
Jeppy in reply to Mmrr

hi how do you get RA diagnosis pls? Can it be managed without drugs if only niw and again.

Mmrr profile image
Mmrr in reply to Jeppy

Do you think you have RA ?

If you have joint swelling , pain, redness , aches and possibly fatigue your first point of contact is with your GP , who may check your bloods for rheumatoid factor and CCP amongst other checks.

If the GP is cconcerned they will refer you to a rheumatologist.

Only a rhrheumatologist can diagnose RA .

Jeppy profile image
Jeppy in reply to Mmrr

thanks. I have wondered but I do t have redness swelling and pain just in hip and back

I know these two areas to have low density

What causes RA do you know what flares it?

I’m thinking on hormone dips with mine after responses

Thanks

Mmrr profile image
Mmrr in reply to Jeppy

The NRAS website has lots of information about RA which you may find useful. If you are concerned you really should contact your GP for advice. I hope things improve for you.

Jeppy profile image
Jeppy in reply to Mmrr

thanks lots I’m speaking tomorrow. Iv had nil help to date I feel unlucky tbh I don’t think it’s RA as the pain is at low density points and there’s not too much for this and it’s not all the time

Thanks.

Jeppy profile image
Jeppy in reply to Monkeysmum

we are so good at doing this

Sheila_G profile image
Sheila_G in reply to Mmrr

That's interesting. I have always been puzzled about the fact that I am a bad sleeper but before a flare I sleep very well. Not a coincidence them.

Mmrr profile image
Mmrr in reply to Sheila_G

I don't think it is a coincidence, it happens all to often....scores of times not to be interlinked.

Jeppy profile image
Jeppy in reply to Mmrr

never been a methodical type butmim going to put on a calendar now 🤔

Leics profile image
Leics

Well I’ve often thought that hormones play a big part in RA. I had to have a hysterectomy in my 30’s and although they left my ovaries in when they packed up that’s when RA hit me. HRT has been a massive help to my joints and I wouldn’t come off it without a massive fight. My mood definitely changed when they changed my HRT so maybe you need a different pill ? I’ve found myself staring at the walls crying my eyes out when I was put on pills but patches don’t have such effects. If you say that you’re flaring close to your periods starting then I’m inclined to think it’s most definitely hormone related and a chat with a GP about it could help even if it means changing brand of progesterone pill. I’m only on oestrogen one. Sending hugs to you that you manage to sort it out. A blood test may help to check your levels or hormones you’ll then know if you’re perimenopausal or not.

Monkeysmum profile image
Monkeysmum in reply to Leics

Thanks for your reply Leics, that’s really interesting. I have been thinking about having a chat with my GP about HRT or as you say perhaps even changing my pill - just need to build myself up to tackle the 8am call to fight for an appointment! 🤦🏼‍♀️🤣🤣

Leics profile image
Leics in reply to Monkeysmum

Haha yeah know that feeling I’m not good in the mornings. My GP has some online appointments which can be booked in advance if it’s not urgent only just been reinstated so have a look if you can do that. There’s just been a big thing in the media complete with adverts about menopause so GP’s might be happy to help coz there’s perhaps an extra amount of money set aside for it especially if you’re suffering with low mood.

Monkeysmum profile image
Monkeysmum in reply to Leics

I’m not good in the mornings either, but I’m up with the kids - main problem is not able to stay on hold for an hour whilst also doing the school run! My surgery used to do online appointment booking but it’s not come back yet since COVID. Hopefully it will come back soon. My mood is Ok generally, it just seems to be low just before a flare hits which is what made me notice it. Our bodies are just weird sometimes! 😜

Jeppy profile image
Jeppy in reply to Monkeysmum

Thankyou for,your thread I've been in low mood and despairing with these flares thatnlast a few days. I didn't understand it butmdo,now,Thankyou Yes hormones still fluctuate.

Guess we will need to be kind to ourselves these days I'm putting it on calendar to remind

Louise Newson is great at women's hormones if have a read, she's also brought it out of dark ages alongside Davina Mc all. About time. I'd say I've started patch in my 60s I'm glad you can get help,sooner. Xx

Monkeysmum profile image
Monkeysmum in reply to Jeppy

Thanks Jeppy, I’ll look up Louise Newson.

Jeppy profile image
Jeppy in reply to Monkeysmum

dr sarah Myhill is a good link she used to be gp

Unsure what she’s saying about hormones but Louise speaks it as it is for sure

oldtimer2 profile image
oldtimer2

Ah....thinking back to those days several years ago, yes it was very similar to that awful cross/lethargy/prone to accidents feeling I used to get before a period - I used to leave the car on the drive and not put it in the garage because of the tight fit that I just could not manage at that time of the month!And yes I had identified that I felt very similar before a flare....If I'm on a higher dose of steroids it disappears and I then get the irrational anxiety I have with steroids instead - you can't win!

Monkeysmum profile image
Monkeysmum in reply to oldtimer2

Yes, I get the prone to accidents/clumsiness too oldtimer! Love your garage story, sums it up perfectly. I wonder if it is a hormonal change before a flare or just caused by the inflammation itself in some way. I struggle with feeling anxious on steroids too, great for my body, not so great for my mind.

Boxerlady profile image
Boxerlady

The posts on this thread are really ringing a bell with me - particularly today. I felt low, weepy and tired yesterday, slept quite deeply last night (despite waking as usual just before a few hot flushes) and have a swollen and painful right hand and wrist this morning. I'm postmenopausal (62) and had my horrible peri-menopause before developing RA. I'm not sure if my hot flushes are hormonal or due to RA or meds; I stopped HRT a couple of years ago which was just after developing RA so who knows which is responsible?

I've got a GP appointment on Thursday to discuss my vertigo (have had short periods of it for many years but this one doesn't seem to be going away) so might see if there's time to mention the flushes.

Monkeysmum profile image
Monkeysmum in reply to Boxerlady

Sorry to hear you are feeling this way too Boxerlady, I hope your pain settles soon for you. I often notice that I feel flushed when I am flaring so I assume it is caused by the inflammation in some way? (Or perhaps I’m in complete denial and I am actually menopausal!). Will be interesting to hear what your GP’s view is on it though if you do get time to mention it. Hope they can help with your vertigo too, not pleasant at all - if you are experiencing increased inflammation at the moment, I wonder if the vertigo could be caused or mad worse by inflammation in your ear? Sending a big hug your way this morning 🤗

Jeppy profile image
Jeppy in reply to Boxerlady

sympathise as it's horrid. I had it until I was diagnosed hypothyroid. I haven't had it since being in levothyroxine but that's my story

Please be aware if you are thyroid check your TSH (thyroid stimulating hormone ) is not ok if it's over 2

I've had a long road as for years I was told normal at 4.6. This is where gps are trained up to. I had many hypo symptoms and when I finally saw an endocrenist he says TSH needs to be under 2 for wellness

How can this hypocrisy be? And, I joined Thyroid U.K. Who prophesy that most well people are well when it is at a one

I feel it needs shouting from rooftops something needs to be done but of

course it would cost a lot more to prescribe so many more

TSH is on your blood tests you are allowed a copy of the tests by law if ask at reception Mine is 3.4 at the moment and I feel very hypo although not vertigo just so exhausted and lethargic brainfoggy

Sorry to ramble good,luck

Boxerlady profile image
Boxerlady in reply to Jeppy

This is very timely - thank you.

The GP suggested getting my thyroid checked in case it was causing my flushes so I've got a blood test booked. She also said that she'd contact a gynae re me restarting HRT.

I do feel that I'm more tired, lethargic and foggy than dizzy - exactly as you've just described.

I've just got home from a day with friends (a mixture of work and socializing) and I'm completely wiped out. Looking back, this didn't happen when I was on HRT so maybe it's that or thyroid or maybe my RA is flaring although my joints aren't too bad atm 🤔 Too many possibilities, especially when I'm feeling like this! 😵‍💫

I'll wait for the blood test results and the response from the gynae and then decide who to speak to next.

Jeppy profile image
Jeppy in reply to Boxerlady

hi. Yes. I too was very pleased to see this post I just want to know TUK discount code to order t3 test :)

I’m pleased you have good backups. I feel very let down to be fair No gynaecology ever just antidepressent offers ! May i ask age ish ?

I got hrt patch finally I hit gold when moved house with a new practice I half the patch

I think this affected my thyroid a lot as TSH shot to 7

As I’m having op Iv stopped hrt although I do wonder if this is outdated now, and TSH heading back down again so it seems this for me

Needless to say my woomph decreased also

A lot to thin about re vits and magnesium too.

Please can you PM me how you go ?

J 🥰

Jeppy profile image
Jeppy in reply to Jeppy

ps. Have you lost weight at any point please? Maybe you didn’t need to reduce. Mine piled on in untreated meno & hypo

Jeppy profile image
Jeppy in reply to Boxerlady

yes. Too many possibilities. On good days I don’t think I need a new hip !!!!

Sheila_G profile image
Sheila_G in reply to Jeppy

Hi. I have had an underactive thyroid for about 27 years but 4 years ago I had to see an endocrinologist who did all kinds of tests including going to the hospital once a week for 6 weeks. I had to stop taking my thyroxine and they gave me one massive dose each week when at the hospital then tested my blood every hour for 5 hours. It turned out that I have an unusual thyroid in that my blood test results show wrong readings. The specialist nurse who had been doing the job for years hadn't seen it before and couldn't understand what was going on so got the Endocrinologist to take over. They didn't give it a name but said when I had my blood tests the GP will tell me I need to reduce thyroxine but I haven't too. They explained it all in a letter but each time blood test results are back I have to tell GP all about it before she looks at my notes and reads the letter from the hospital. It seems my readings are back to front for one part of the teat. They told me that it wasn't rare but it was very unusual. They had seen it only a couple of times before. That's rare in my book. Anyway I am fine and just doing what the endocrinologist told me to do. I hope you get sorted out.

Jeppy profile image
Jeppy in reply to Sheila_G

Thankyou. I have to be honest I don’t understand that. Back to front? What’s that about

Sounded very thorough indeed sadly mine do no more than gp other than say be under 2 not 4.6 🤔

Sheila_G profile image
Sheila_G in reply to Jeppy

It is something to do with tsh3 and tsh4. I have too much or too little of one of them. I will try to find the letter and let you know.

Jeppy profile image
Jeppy in reply to Sheila_G

..what numbers were you getting ?

Jeppy profile image
Jeppy in reply to Sheila_G

just thinking of a friend. She says her doc says she has no t4 in her bloods although she takes 150 a day

Happy5 profile image
Happy5

Interesting I experienced low, sad reaction to something in a drama (fiction) I'd normally cope with. Not in a flare but in some pain due to missing a MTX injection for my trip.

I did experience terrible depression few years back when struggling with flares and pain,

so did some research there's a view the inflammatory aspect does increase depression in some.

creakyjoints.org/living-wit...

I'll make a note if previous low mood is succeeded by pain, flare etc.

Thanks for raising the topic.

😊

Monkeysmum profile image
Monkeysmum in reply to Happy5

Thanks for sharing that article Happy, very interesting to read. I hope your pain improves very soon 🤗

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