Hi all,
Just wondering if any of you are dealing with a similar thing? I deal with endo pain very frequently at the moment- I get flare ups most nights and often in the day as well. But when the pain has subsided, I always have this debilitating fatigue! Paired with the loss of sleep I’m experiencing, I just feel so exhausted all the time and it’s so difficult to carry on with my day and not stay in bed, even though I may not be in pain in that moment!
Any advice on how I can manage this?
I totally feel you and understand everything you are going through! This has been my life since around 15 years old. I’m 38 now. There are maybe a couple days randomly I feel “good” other than that I’m in agony. The newest thing to begin over the past couple months is debilitating hip and back pain . I can’t even describe. After my 2nd surgery I was also diagnosed with intersistital cystitis. A lot of other issues developing over the years
Hi, hope you are well. I get cramps almost every day even though I'm on pain medication but it's really bad during flare ups. I am always so tired that I have to have a nap during the day for atleast an hour due to the fatigue! I got my recent blood test results done and found out I was anemic so this also explains why I am exhausted all the time.
Oh my goodness! Sending you good wishes.I have had low iron in the past and I have wondered if maybe I should start taking supplements again so I’ll probably investigate that. Thank you for sharing.
Yes make sure you do! And I take ferrous fumarate 210mg one tablet a day to help with my iron levels.
I absolutely have constant pain and co start fatigue - you are definitely not alone!
I would speak to your GP for help with sleep and pain relief. When you are in pain, your muscles tense, particularly in the areas that hurt. Your immune system also kicks into overdrive, because you're in pain when you shouldn't be, and something is causing that pain that your immune system is trying to find and fix. Unfortunately with endo, the immune system can't 'fix' it because nothing really can. But it keeps trying every time you have a flare up because that's its job.
So during the flare, your body is tense, your immune system is in overdrive, and because you're in pain your adrenaline is higher than usual because your body is registering danger and survival instincts kick in a bit. Once the pain subsides, the adrenaline lowers, the immune system calms down and your muscles relax. After all that effort, your going to feel exhausted.
So first thing to do is mitigate the flares (or at least the pain) as best you can. If you've exhausted the possibilities there, then I'm so sorry you're still having trouble. But if not, talk to your GP about pain mitigation.
And the second thing to do is work on the insomnia. I get this, too, and it's frustrating to be so exhausted during the day only to not be able to sleep at night, even when you've kept yourself awake all day so that you hopefully COULD sleep at night! I would also talk to your GP about the sleep issues, especially because there are potentially dangerous interactions between sleep-inducing medications and pain relief medications. Self-medicating for sleep can become dangerous depending on the other medications you're on, even with herbal remedies like St. John's Wort.
I hope the GP can help - and honestly unless they've sent you to specialists for the sleep problem, they can't have exhausted their possibilities for at least that issue!
Thank you! As far as pain relief goes, I’ve almost exhausted all the options but I’m going to keep trying.
Hi,
Are you taking any daily vitamins? I wasn’t aware until talking to a nutritionist at a company that endo is very nutrient hungry. I started taking regular daily vitamins and i saw a difference in my fatigue.
Hi, thanks for replying! Could I ask what supplements you currently take? I’ve had low iron in the past and will probably start taking supplements again and maybe vitamin D. As on now, I’m not taking anything, just trying to eat healthy.
That’s okay, yes sure I’m currently taking Vitamin D, Magnesium (good for fatigue & better sleep) Omega 3, and a daily multi vitamin.
I would suggest you get your bloods tested again in case you are anaemic. If you go to your GP.they will probably want to do that anyway.
I have been finding a Tens machine helps with pain, the one I have is the Ova+.
Marilyn Grenville has written quite a lot about nutrition, supplements and endo, if you have a look on Google. Specifically she recommends a good multivitamin, Vit B complex, magnesium, Vit E, zinc, Mega Vit C, fish oil and a probiotic!
Of course a healthy diet helps, though it is hard when you are tired all the time. I have recently been cutting out red meat which does seem to help.
At the moment I am in a similar situation to you, but I have the advantage of not having to hold down a job as I am retired. It does dominate my life though. I am looking at non medical options as I am getting nowhere with doctors. That doesn’t mean you should give up on getting better pain relief or other treatment options via your GP though.
I have just started reading Endometriosis:healing from the inside out by Carolyn Lovett, which I saw recommended on here and it seems to be an informative summary of non medical strategies you can try.
Hope things improve for you soon.
Thank you so much for your reply! I will check out the reading that you recommended. I’ve ordered a Tens Machine in the past couple of days so we’ll see if that helps at all. Doing my best to eat healthily but think I will probably benefit from adding some supplements into my diet.
Hiya, totally understand what you are going through, it's hard most for us all and it's so hard for our partners, families etc to understand. I'm on pain killers everyday, very little sleep and just burst out crying for no reason. Having implant fitted this week so I'm hoping this may help. Although very worried about it too.Take care x
Hope it helps x
Hi,I feel like this most days up most of the night just try and force yourself up I know its not the best but when your not in pain atleast this will make you more motivated for the day ahead. I do feel the same most days but I have kiss so I have to get up for them and tbh that's what keeps me going and not giving up. Hopefully we both can get this sorted soon. I've been waiting over a year and half and so no further on! My doctors doesn't seem to want to help either. Good luck with it all.
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