I was wondering what peoples experiences were with fatigue and Endo and Adeno. I have always been a tired person but sometimes my fatigue is so bad I can barely function, anything other than laying in bed is almost to much.
I would be grateful to hear other peoples experiences and what endo fatigue feels like for them.
hi I have fibromyalgia and CFS as well as endometriosis and adenomyosis.
Always tired / feel like I never get a decent sleep, can sleep for 12 hours overnight and wake up exhausted. No matter what food I eat, vitamins I take or exercise it’s always the same.
My body aches, it’s stiff, can be teary when really tired, if I go out for the day, I pay for it the next day. Also feel that some people in life zap my energy, because they are hard work.
X
May I ask how long it took to get your fibro and CFS diagnoses, and did you get them before or after your endo diagnoses.
I have asked a few time to be investigated for fibromyalgia or CFS(although I’m aware there are no tests for cfs and fibro) and I have always, ALWAYS been told, it’s hormonal or it’s your diet. I have a dr appt coming up and I am preparing for a bit of a battle, I’d be interested to know your story.
Hi, I had been feeling drained/tired as a teenager and always got the “tired all the time” bloods which would often show low iron. It actually took me to move area, be in my 30s before a GP diagnosed me with fibromyalgia and CFS. I got my diagnosis prior to my endometriosis/adenomyosis being diagnosed. She had looked at all my notes from years ago and said this is what you have. No tests, simply going by my symptoms and the length of time. I believe I got fibro though trauma, I was in a car accident when I was 16 years old, they say fibro can be brought on by traumatic events in life.
With regards to your GP, I would have a look at all the symptoms online, then say look this looks like fibromyalgia. I am on nortryptaline for nerve pain, which does help but nothing 100% takes away the pain or tiredness. There is also a fibromyalgia forum, which I am part of, lots of lovely people so i suggest you join us on there too 💜
This is so incredibly helpful, thank you for sharing your story!
Good luck with your GP xx
This is so interesting. I've been wondering about a link. My Mum has had fibromyalgia for many years and so often I feel our symptoms echo each others.
I haven't explored it for myself. However, I feel like I can pinpoint where there was a sudden change particularly with my sleep. I went from what I would call 'normal' sleep and waking refreshed etc to suddenly feeling like I'm zonked and can't wake up well. I always feel like I've not really slept. This started around the time I was starting to get lower back pain and body aches and a few years before the endo diagnosis.
Hi Smalltalk,
I'm sorry to hear you are suffering with fatigue. Mine used to be very cycle dependant and present it's self the week prior but now it just seems to be more often than not. I'm tired all the time, but sometimes it's to the point I can't think straight or make decisions correctly.
I've found for me, working as little as financially possible, taking nap in the day, and an early night is key. I also avoid sugar, caffeine and gluten and they seem to give me headaches which makes me even more cloudy headed and fatigued.
Hope you find some answers.
hi hun I am I. The same boat as you I have endo and adeno and I’m always tired I’m looking for one answers but my vitamin d is low aswell I found out yday they have put me on a 4 month course of 20000 IUD or how ever u say it I’m hoping this will help me
Have u had all ur bloods done for vitamin deficiency?
I was diagnosed with endo in March but have been feeling tired for ages. Been back and forth with GP for years (having blood tests, vitamin deficiencies but supplements not helping symptoms) but the last few months have been awful for me feeling tired. Went to see a new GP on Monday and she thinks it’s ME/CFS so she is going to do blood tests etc to rule things out and if that’s all normal, she’s going to refer me to chronic fatigue specialist. Hope you get help, it’s horrible feeling so exhausted all the time. X
GP is likely right - fibromyalgia is now being seen as a hormone deficiency and is not per se a proper diagnosis. It’s a cluster of noted symptoms that’s been given a syndrome name. It appears with Thyriod, Cortisol, and Sex hormone dysfunction, progesterone intolerance or resistance. If you are using progesterone/ progestin suppressant treatment for endo that in itself can bring it on as the overall hormone picture becomes imbalanced.
I hope they have done a thorough screen panel test of all the hormones and blood stats for you before swinging you out the door again. Try both of these to help with the crushing exhaustion Katie Edmonds book Heal Endo for specific understanding of your picture (and maybe Diet changes ) and Curable App. I find when the fibro side got too bad I was also overwhelmed by lots of noise and sound during the menopause and endo game and a lifesaver was using Calmer ear modulation plugs from Flare Audio. Still hear everything but the aggro level of everyday was bearable again and my sleep dramatically improved. Less aches more energy, less pain. Far less intrusive or socially isolating than ear muffs - my hubby was hugely relieved to be able to eat crisps again without me wanting to kill him. I know there’s a lot of reporting these are very helpful for neurodivergent people too but for me it was definitely part of the hormone imbalance and loss of natural oestrogen that sent my hearing hyper alert ‼️ which was exhausting and pre period I seemed to go deaf as well. Nightmare ontop of the rest of the ride.
On the whackier end of the territory some folks swear by Grounding Sheets and Nurosym … frankly anything that works am for ☺️
I have been experiencing a bad flare up with endo pain this week and have been struggling with fatigue for the past 2 weeks. Like yourself I always feel tired but haven't experienced tiredness like this before. Have you found anything that helps with the fatigue? I'm finding that I have to nap for an hour once I get home from work and have very little energy to do anything else.
oh dear, same here, and currently on my period, 🤦🏼♀️ no willingness to do anything
Same with me. Constantly felt tired as a teenager, and in adulthood I feel like bed is the best place to stay in. I didn’t know about my endo until I was 28 (now 31) and the fatigue level during my period just hit me really hard whilist in the meantime I must work. Absolute struggle.
I’ve had to go p/t at work due to severe endo fatigue. (I’m on my feet all day) It was so bad I could hardly get upstairs when I worked f/t, literally pulling myself up on the bannister, Even now by mid week I’m exhausted, so being p/t gives me time to recover in between (I.e Th p.m, Fri and off weekends anyway.)
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