Feeling exhausted all the time - advice p... - Endometriosis UK

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Feeling exhausted all the time - advice please!

luthien profile image
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So I've always been tired, like exhausted / jet lag sort of thing and always put it down to lack of sleep until about 5 years ago which leads me to me diagnosis and excision of endometriosis. The tiredness does go from time to time but no amount of sleep gets rid of it, if you get what I mean.

I've always just coped with my tiredness as I thought there wasn't much I could do. Knowing its liked to endometriosis from research leads me to think there must be other women out there that just feel this wiped out. I work full time and am allowed work from home for my flareups - which currently are only around my period and the worst is on the first day, so that's my wfh day.

Recently I've just become more upset / irritable / exhausted and tired; kind of wanting to give up on everything; I think this exhausted thing is getting to me :(

Anyone have any hints / tips on coping? Should I go back to my gp / specialist? I'm not on any medication and am managing all other symptoms well. I really don't want to go on antidepressants or sleep tablets. Can I suggest dropping to part time for say 1 day a week or does that seem too extreme? Has anyone had to do that?

I feel like I'm just a weakling :(

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luthien
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12 Replies
Leah12 profile image
Leah12

Hi farahziya, I’m not 100% sure but I hope it helps a little bit to know I kinda feel the same.

I believe it may help if you maybe have fresh mind start exercising , listening to relaxing music, having time for yourself. However don’t lock yourself away, try keep you and your mind active.

I have flare up we’re I’m in more pain and more tired etc and then some days it’s not as bad.

However another reason, I came of the pill which messed my hormones and my body up, I feel so much better at the moment only been 1 week. I’m not sure again if it’s psychological or it is to do with endo and pill.

Hope you find a way xx

luthien profile image
luthien in reply to Leah12

Thanks for the reply Leah12 :) It helps to know I'm not the only one and someone gets me.

I do exercise quite a bit and have a social life so I'm good on that front; I do pole fitness which is great for confidence too! Listening to music and reading I love so that's not a problem. It's really only recently like in the last week this feeling of being exhausted has started to get to me.

Love and hugs to you; hope you continue to feel better as the pill side effects lessen. Coming off the pill years ago really helped me; less chemicals in my body x

Thanks x

Leah12 profile image
Leah12 in reply to luthien

Thank you farahziya, you too hope your on the mend , I’m glad you are very active etc. And it’s helping you.

Maybe take a visit to your go. However I wouldn’t recommend being reliant on tablets to make you happy etc. Your strong enough to come out of this stage.

All the best xx

Cats1990 profile image
Cats1990

Hi Farahziya, I'm new to this forum (only joined a few days ago!) but I read your post and couldn't help but feel like I wanted to get in touch, as I'm feeling exactly the same at the moment.

I'm so sorry you're feeling so exhausted at the moment - not being able to shift that tiredness fog is so frustrating and upsetting, just makes you feel low. Do you find that with the other pressures of work and everyday life you sometimes feel like you don't have time to be tired too? :(

I'm currently going back and forth between my GP/gynacologist/dietician as I've been told I have suspected endo - I have been put back on the contraceptive patch, but the tiredness is just relentless! I've reduced working from full time to working 3 days a week (I'm also caring for my Mum) but even without caring for my Mum, there's no way I could cope with full time work.

If you feel like you/your body needs it, there's no harm in looking into it - I don't think it's too extreme at all. Would your work be able to facilitate a trial month of reduced hours, or even some compressed hours? That way you could see how it affects you without making a permanent commitment. That's great that your work let's you work from home during your flare ups!

I'd love to hear about how you manage your other symptoms (if you don't mind me asking). I'm struggling with pain and bowel symptoms, and although on a low FODMAP diet, I'm having issues with reacting to pain relief. Do you have any tips for that? My hot water bottle is my best friend and comes everywhere with me!

Love and hugs xx

luthien profile image
luthien in reply to Cats1990

Hey, thanks for taking the time to reply :)

Welcome to the forum!

I have a good home life so I don't feel stressed by that but work and social stuff does make me feel more stressed and then there's a pressure to not show or feel that. I agree sometimes I feel like I'm that busy I simply don't have time for being tired, but then it kind of is part of me and makes me feel completely wiped out which makes me more annoyed. I do find ways to calm and have me time, so I can chill. I've learned to live with it, but recently it's become more noticeable, more bothering if that makes sense.

Wow you're careing for your mum *hugs* that's obviously not great but so amazing that you can do that for her. It makes sense that you have reduced your working hours. I don't have that sort of responsibility though so somehow I look around me and think "all these people can work full time, why do I feel so wiped out".

I like your idea of trialling a reduced / compressed hours idea. I'm new to my role so perhaps I'll give it a month or so, see how I feel and then suggest it as a trial. I'd probably only want to reduce my hours by say 1 working day; perhaps something like take wednesday off, or even a half day. My working hours are 37.5 a week so if I took a day it's still 30 hours.

My current symptoms are bloated, tired, headaches, irritable stomach, these can be random. Around my period; heavy bleeding doubling up on pads / tampons, back pain, stomach cramps, shoulder pain. It's manageable but sitting at home makes it so much easier than sitting upright at work, hence the work from home.

If you'd like more info on my story then feel free to have a read

:

healthunlocked.com/endometr...

What's your symptoms like? Have you had your endo seen by a specialist? any operations / excisions? Happy for you to message me with any questions, anything at all :)

I think you can just search for it "All this effort does pay off - my story - hope it helps !"

It may help you a little to see what I've been through and what I've done to cope.

xx

ElectraHunter profile image
ElectraHunter

Dear farahziya, feeling extremely sorry to know about your suffering for all this time! Fully understand you cause my health is weak and tiderness is my faithful friend for a long years. Can you please tell what is your work related to? I don't thing part-time work is extremely at all, I guess it's on the contrary good way to manage your time and feel well. When did you visit your gynecologist last time? Do you have a good psychologist to share your concerns?

luthien profile image
luthien in reply to ElectraHunter

Hey thanks for replying :)

Glad there's others out there that get how I'm feeling.

My work is software testing related, I've recently moved jobs, but this workplace seems more accommodating on the work from home front, and have already provided me with a laptop to use at home. I'm obviously still in the learning phase so can't do that yet.

Perhaps my tiredness is made worse by the fact that I've only been in the new role 2 weeks.

I shall wait perhaps a month or so then ask about reduced hours.

I visited my endo specialist about a year ago now after my last lap, he was all happy with the results and recovery which is great. At the time my tiredness was not the main reason for sorting the endo; I had lots of other symptoms.

I don't have a psychologist at the moment, I may look into it though.

Hope you're well xx

ElectraHunter profile image
ElectraHunter in reply to luthien

Oh, that explains a lot. Maybe, you're feeling stressed out because of big changes in your work area. Not that huge, but stressful enough. With every new work or workplace I'm feeling like sucking and juvenile kid with no support, guess it gotta be normal for many people. You have to accept this period as common. A great item is your software related job, I know it's very comfortable to combine and dispence your working hours to remote job and office, because my husband is a web designer :) keep me in touch concerning your latest news, both health and job

LovingVibes profile image
LovingVibes

Hey Hun, u not alone! As I type this msg I’m going thru it myself. Haven’t been to work since Tuesday and feel super drained. It’s so hard to go thru this and all we can do is let it pass.....

I want to start exercising again... which I haven’t been able to for 2 years due to flare ups and a lap few months ago. But I guess we have to somehow pick ourselves. I try to walk 1.5 miles after work instead of taking the bus. It’s exhausting but it’s something. Otherwise the moment I am home I am completely drained and have no energy to still go to the gym.

It’s a process but we all have to do things at our own pace and make sure we listen to our bodies. Some days r fantastic and others... not so much. But u not alone, none of us are!

We can’t give up 💗💗💗

Thecraftyadder profile image
Thecraftyadder

Just wondering if you've had any blood tests done? I've really been struggling with fatigue since summer time. Literally falling asleep in the day. I have so many muscle, leg and back pains. I got my GP to run tests as I wondered if I had anaemia but turns out I'm vitamin D deficient despite a good diet and having it in my multivitamin. I guess with bowel issues comes the risk of not absorbing it well enough. I'm now on a really high strength tablet she prescribed.

I know all this fatigue may be endometriosis but I'm hoping mine will lift a bit once my vitamin d level increases. I'm also giving CoQ10 tablets a try to see if they boost my energy but its too soon to know as I only got them this week. If I were you I'd definitely be asking for your iron, vitamin D and thyroid to be checked.

luthien profile image
luthien in reply to Thecraftyadder

Hi,

Thanks for your reply :)

I have yearly full bloods, nothing concerning last year.

my iron levels are a little low and wbc count a little high but still in the normal range, researching values online suggests there's no issues unless it's linked with liver blood test problems - none there. I take a copy of my results home to research as I find docs sometimes just say it's all okay.

I'm due bloods in about a months time.

Hope you're okay.

x

Thecraftyadder profile image
Thecraftyadder in reply to luthien

Yeah I understand about wanting copies of results :)

You do really well working full time by the way. I'm struggling so much doing part time over 4 days. I'm having a flare up at the moment and had to call in sick yesterday for the first time since my surgery 😔 some days it's hard to find the mental and emotional energy to keep fighting this illness isn't it?

All the best with the new job. Hope it gives you the flexibility you need to keep going x

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