this post is probably for the menopause group, but I know many in here will have gone through peri-menopause / menopause and so am sure may have some relatable experience.
I’m currently experiencing terrible insomnia from mid cycle until my period comes. So for about 10 days. My cycle is only 20 days. My RA also flares around the same time each month. I wake with sweats, flushes and then anxiety.
I’ve struggled with HRT although they’re trying me with Mirena coil and then oestrogen on top but have to wait for this as needs to be fitted under general anaesthetic.
My questions mostly if anyone else experienced similar and indeed the flaring at this time also, did HRT help? I’m being referred to gynaecology to discuss longer term options but also did anyone’s RA symptoms improve once they’d gone through menopause?
Any shared experiences, suggestions would be much appreciated. I can tolerate most things, the pain, fatigue etc., but insomnia for me is so debilitating. It hugely impacts me mentally and I’m struggling to cope with work (albeit in part time and flexible) - but I’m a single parent and life is just bloody hard at times anyway without this on top.
Literally at my wits end about it. Thank you x
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Sapphire1701
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Yes I did! Yes HRT helped, yes it went away when I menopaused. You have my total sympathy, but you will get through this, there is a menopause paradise awaiting you! Just try to be kind to yourself and cancel anything extra that you can't cope with and ask other people to help you, tell them you are struggling. Good luck Xxx
Why is the coil being fitted under a general anaesthetic? Have you had previous problems with fitting a coil? It should, with local numbing of the cervical area, be a painless procedure, although too few people are offered this because of lack of training.
And yes, I found having HRT was a real benefit at the time, especially with the sleep and hot flushes. The perimenopause was the worse, perhaps because it was new and unexpected.
Perimenopause can feel worse because of the incredible fluctuations in hormones. Sleeping disturbances were quite cyclical for me ( and horrific mood swings ) hrt has helped enormously as well as a low dose anti depressant oh,and I found the mirena coil ideal as it seems to give a steady release of progesterone. I had a very late onset at 55, and only now at 58 do I think i have finally hit being post menopause🙄I find fibromyalgia, has its own symptoms but i think it likes to 'ramp up ' other health conditions and symptoms as well.
Another vote for HRT - sleeplessness is the pits so I really feel for you. It definitely helped me during perimenopause. Another possibility is a low dose antidepressant. I started Mirtazapine for anxiety and the GP persuaded me to try it by emphasising that it was good for sleep and I'm so glad that I did. Now post-menopause and off HRT, I'm still on a half dose of Mirtazapine - way below the dose for mood effects - simply for the great sleep that it gives me.
Mirtazapine is what I take. Weirdly even half a dose was too strong, but just a tiny 1\4 is wonderful initially for cyclical mood swings, but very much help sleep.I also take amitriptyline, which although another AD, my go prescribed to help fibromyalgia nerve pain. Again, helps sleep even if oa and ra pain makes me wake when I turn over, I get straight back to sleep again
I was on the full dose originally (one tablet) and initially it zonked me out but once I got used to it - and realised that I needed to take it at 9 pm if I wanted to be alert by 8 am - it was fine. I have read that the sleep effects increase as you decrease the dose but I'm not sure if that true 🤔 I might get a pill cutter and try a quarter....
Thats interesting that lowering the dose may increase sleep benefits. I have also had to experiment with best times to take doses, 7pm seems to work with amitriptyline,then the mirtazapine I take half hour before bed. Am not dozy when I wake up,but by 2\3 pm I am often napping for 20 mins or so...
It knocked me out for the first couple of doses but I stuck with it and it settled down. I did find that taking it an hour or so before bed helped me to wake up at a sensible time the next day and after the initial period, I also found that I was able to wake in the night if necessary (e.g. dog emergency! 😂) and still get back to sleep easily. I was on one tablet for ages but cut down to a half when life was more settled and I didn't feel that I needed the emotional support, just decent sleep.
Well, I take a 1\4 of tablet per night and doesnt seem to affect my alertness in the morning. Apparently it can increase feelings of hunger, but since I have had extremely reduced appetite for about 3 years I cannot comment on that side. My weight gain I put down to chronic fatigue syndrome and pain 24hrs a day.For me it was a simple choice, during perimenopause my cyclical mood swings were so severe they actually induced suicidal thoughts, so if I had the choice of an AD that stopped these moods and it was a side affect were weight gain? There was only one answer.
But we all react differently to meds. Unfortunately there is a lot of trial and error to find what suits for each condition we have. I now feeling very stable on the hrt regime and the added AD.
Btw, I would urge anyone who may suffering with mental health difficulties, whatever the reason, to seek help x
Yes the HRT helped, I had fewer periods because I was on the mini pill, but it just seemed to mean an extended period of PMT once every three months and it certainly caused some flare ups. HRT seems to have calmed that down.
I don't want to spam this board with the same advice to everyone on lots of threads, but truly magnesium glycinate and increasing my iron levels helped quite a lot with the sleep problems too.
I was a massive fan of HRT! Until I had to stop because of breast cancer 🙄(all sorted now 😁) I hadn't been diagnosed with RA then so only the menopause stuff to deal with (anxiety, insomnia, sweating) for me).Having talked with my friends there isn't a 'one size fits all' with hrt, so if it's not helping enough, try a different approach (patches, gels, tablets etc) mix and match.
I wish you best wishes with the Mirena coil too - it really is a good option.
without sounding self pitying and grumpy but I’m glad you have managed to get someone to take you seriously! I was told I can’t have her because of family history and then that was it, I have to put up with it!
But what I have done is create habits that seem to work when I wake. It’s taken several years, but if it’s bad I get up and make a decaf tea and start again. Otherwise I put on a podcast, take painkillers (because i often find the increased pain wakes me), lavender sleep spray on the pillow and that usually works.
I feel your pain! I am in the same boat and sleep is so important. If you find the magic answer, please do share! Good luck!
I’m sorry to hear that you are going through this. I’m going through the same but mine is a medically induced menopause so I have injections every month to turn off my ovaries as I need a full hysterectomy. I follow a wonderful lady on Instagram DR Vonda Wright who is a surgeon and menopause specialist her advice has been invaluable.
I now take Magnesium Glycinate two hours before bed which helps me to sleep.
I also try to exercise three times a week even if it’s just walking.
I also have to look after my diet and I only eat rye sourdough bread, I am lactose and gluten free and stick mainly to an Auto Immune Protocol diet which all helps. I make my own ginger, turmeric and black pepper shots in the blender and then freeze into ice cube trays. I take out three small cubes or two large each morning and dissolve in warm (mustn’t be boiling) water and drink on an empty stomach. It helps with inflammation and the cleaning of the colon too.
I take only liquid vitamins. Vit D3 spray daily, milk thistle and B vitamins. They are better absorbed into the body in liquid form
I’m just waiting to hear from the GP to see if my B12 is low following a recent blood test.
I have just started on Humira injections so my second is today and I will be upping my water intake to around two litres today to help with the terrible headaches I got last week which lasted a few days.
I apply estrogen gel daily and a progesterone gel tablet.
I have read that women who have just been diagnosed with RA and having to go through Perimenopause seem to have double the symptoms as PM causes joint pain similar to Arthritis/RA.
I also take a bath before bed with lavender oil in when I’m really struggling.
I have suffered insomnia since childhood. Later at 17 was diagnosed with Adult onset Stills Disease which for me manifests as rheumatoid arthritis. Periods remained normal, pill then mini pill whilst breast feeding. Migraines meant a change to the diaphragm cap and eventually a coil. No problems with either but migraines, insomnia and anxiety persisted. A time of emotional trauma brought AD and sleeping tablets for about two years, zopiclone, which worked well and I was able to function at 7am for work. Life settled but anxiety, migraines and insomnia didn’t. I blamed a stressful job and unhappiness. Menopause started about 51, HRT about a year later and still on it now and retired at 62. However anxiety and insomnia and migraine persist especially the anxiety. A period of family trauma led so some sort of flare of Stills or something new. Cancer was ruled out and eventually GP said subclinical thyroid or autoimmune thyroid and said there’s nothing they can do until it’s worse . Meantime the anxiety increases as does the insomnia and I’m still using HRT patches without any problems. Lots of reading leads me believe vitamin or mineral deficiency may be the answer for me but this is a complex field and unfortunately popping a few multivits is pointless and GPs know nothing about optimal levels. My research is ongoing as is the anxiety and my GP has suggested I’m hysterical and she doesn’t mean funny.
I’ve read that those suffering from RA are very low and deficient in vitamins D and B. I have onset osteopenia and have just been prescribed Calcium tablets.
I take only liquid vitamins. Vit D3 spray daily, milk thistle and B vitamins. They are better absorbed into the body in liquid form
I’m just waiting to hear from the GP to see if my B12 is low following a recent blood test and if I’m low will ask for a monthly injection.
Thank you for your reply, my tests were at the very bottom of the range but crucially for GP they were within range so it’s up to me to advocate and treat myself to optimal levels, it’s a minefield, costly and to be frank quite scary and I’m worried I may make things worse.
When I went through this I embraced the insomnia. When I woke up I read until I fell asleep again. I got a lot of reading done for a couple of years and I kinda miss that reading time. I was reading mostly academic books although I did allow myself some fiction between each of the heavier books.
In medieval times everyone practiced the two sleep night. You had your first sleep, then woke up, chatted to the other family members, read, wrote, prayed, put a few more logs on the fire, checked the animals, then went back to bed again.
Sometimes going with our bodies can lessen the side effects. And it didn't last forever. A few years later I was back sleeping through the nightfall.
The best advice I can give is try the Newson menopause clinic. I believe my seronegative issues all started with perimenopause. As oestrogen crashes inflammation rears up with a force. I had issues with tolerating some hrt but got there in the end. I had my last period at 59 and the peaks and troughs of hormone change had a horrendous impact on joint pain and mobility. Hormonal change had a terrible affect on my life and getting my levels right was very tricky but well worth it. Testosterone was the biggest game changer. Good luck it's hard work but so worth it x
Impie, I am 100% certain my Seronegative arthritis,fibromyalgia all were caused by onset of horrendous perimenopause. Totally agree with you. Whilst getting all hrt from my GP and taking a year to get the right regime, hrt ( and testosterone) have certainly helped the hormonal side.
Much same age as me, I am 58 and only now do I feel I am mpost menopause ( mirena coil so no periods to judge this, just waning PMT symptoms)
I can't wait for more research into female hormones and autoimmune disease. Dr Vonda Wright is doing so much and Dr Kelly Casperson. Both are great to follow on Instagram ladies if you don't already xx
Firstly really sorry to hear you are struggling with sleep - I agree it makes everything worse and is the hardest of symptoms to manage with.
I am likely adding some similar thoughts here but ... my RA arrived at the same time as a second wave of peri-menopause symptoms and clear PM was the trigger. I am early days with all of this so am encouraged to hear that for others symptoms dampen down after menopause itself and that correlates with some research out there.
I have had success with Magnesium too, it is on of the things that gets low in PM and has been a game changer for me and sleep. I take tablets but also use an oil which I spray on before bed.
Similar to one of the other posts - I also follow an AIP diet which has helped both sleep and RA symptoms. As well as time-restricted eating and diet changes after following Dr Mind Pelz. The lifestyle and diet changes with both AIP and Dr Pelz have been hugely impactful.
I am also doing HRT (so sorry for the lady who was not given it and others in the silent generation where it was rarely prescribed and for those who can't take due to cancer) ... it took a while to find the right delivery system due to me being seemingly absorption resistant but it has helped with managing a number of my symptoms. Plus the mirena coil and so now don't really get periods which is useful if symptoms are worse around that time.
Clearly we are all different and have to do our own N of 1 experimenting with different things but don't give up because there will be something out there that helps.
I noticed in your bio that you have had steroid injections. All steroids (injections or Prednisolone pills) can play havoc with your sleep. Are you having any now (or recently) as they will exacerbate insomnia. You don't mention what medication you take for your RA but that could have an effect too.
I can't comment on HRT as I have not had it because of a history of breast cancer in my family. But unfortunately I've developed Osteoporosis, which can often be prevented or minimised when ladies are on HRT.
Everyone I know who is on HRT says it makes a huge difference to how they feel and function on a daily basis So do many others who have replied to your post. Good luck with it!!
Hi, no steroids and no injections since last year. I’m on biologic (humira) and leflunomide for my RA. The insomnia is definitely peri-menopausal. I keep a diary and wake either drenched in sweat / hot / or highly anxious, and happens post ovulation as oestrogen drops. Just unfortunate my cycle length is 20ish days so very little respite! X
Am just amazed by all the responses here, thank you to everyone. Seems this is a very relevant topic and sadly I think one very dismissed. Menopause is hard enough, then add in RA and other things and it sure is tough.
Really appreciate everyone’s comments and shared experiences. Glad it’s not just me that is finding it so hard!!
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