Debilitating fatigue: Please help! :'(

I've been an endo sufferer for about 5 years now (although only finally diagnosed 2 years ago) and originally I was on contraception (pill and Mirena coil) to control it. However in October last year, my partner and I decided to stop contraception to begin "trying" for a baby (I say "trying" because we're not monitoring my cycle, more just seeing what happens).

Anyway, i've always suffered with tiredness, even on contraception, but i've noticed in recent months that exactly 2 weeks before my period is due, I begin to get the warning signs of the time of the month - pains & bloating etc. and with it I get EXTREME fatigue. No matter how much sleep I get, I always wake up feeling as though i've only had a couple of hours. My eyes sting, I feel almost dizzy, and I can't get the motivation to do anything and it's really starting to get me down.

My partner and I have just purchased our first home and it needs a lot of work done to it, and in my head i'm raring to get on with stuff and really want to make it into our home, but when I come to it, I just literally don't have the energy to do it and all I want to do is lay down and relax.

I also really struggle to get myself motivated for work and find myself trying to think up excuses for not going in and sometimes I think I should just listen to my body and not worry about work and take the time off, but obviously I don't want to lose my job over this and plus I find that as supportive as my partner and my parents etc. are, no one really understands how I feel and think i'm just being lazy and whenever I try to explain how I feel and how ridiculously tired I am, it just comes out sounding like excuses and so I feel as though they are disapproving if I do decide to take time off.

I just really don't know what to do any more. All I want to do is sleep and I'm so tired I feel as though I want to cry all the time. Does any one else struggle with fatigue, or know how you can try manage it and make it not so bad? I don't want to feel like this any more - I want to feel like me again and have the energy to get on and do things.

Please help me

[KSvedenmacher]

So sorry to hear you are struggling so much. I completely recognise the extreme fatigue, I am really struggling with that at the moment too. I don't have a cure, but I do find eating healthy, drinking 3 litres of water a day, cutting out caffeine and alcohol all helps me get more energy. Mind you, I am still not jumping around with energy, but at least I can drag myself through the day to do my work. But yes, I can't remember when I last had time for any after-work activities that didn't involve lying on the couch watching a film or reading.

[Hidden in reply to KSvedenmacher]

Thank you for your response. Sometimes it even helps just to know that I'm not the only one feeling this way. I do try to eat healthy, although don't stay on track all the time and I definitely don't drink enough water so perhaps i'll give that a go to see if it helps. I just want to have enough energy to want to do things - for instance i've heard that light exercise can help, but it's a vicious circle because I don't have the energy to even think about exercise! It's ridiculous isn't it?! The worst part I find is that only a sufferer of endo knows how they feel because you can't see it and I feel as though a lot of people struggle to believe me and just think i'm making excuses. I wish there was some way for them to see what was happening inside our bodies and to experience the way we can feel for just a day!

Thank you for your advise. Fingers crossed, it might work for me too.

xx

[KSvedenmacher in reply to Hidden]

Yes, the most frustrating thing is people not understanding. When I told my mother recently that I am in pain every single day, she just didn't believe it. "But you don't look in pain." Well, just because I don't lie around moaning about it every day doesn't mean I am not in pain.

The frustrating part about the fatigue, I find, is that I don't feel it makes a difference whether I go to bed at 8pm or 11pm, I still wake up exhausted the next day. I do try to do yoga in the morning, and when I can, it definitely helps my fatigue, but sometimes I am just in too much pain. Hope you feel better soon.

[Hidden]

Hi,

You know im wondering whether you should have a quick blood test to see if your iron levels and vit b are low.

That inability to get out of bed is ringing a large bell for me as i got to this stage when those levels were low and endo can take iron to feed itself and the inflammation.might be worth the blood test hey.

Kind regards

Rose

[Hidden in reply to Hidden]

Hi Rose,

Thank you for your response. I have often wondered if my iron levels might be low, but i've had them in the past and all has been fine. Perhaps I do need to arrange a trip to my GP.

xx

[Hidden]

Go the vitamin b too,the pill can affect your absorption of that vitamin xx

[urgley]

I'm the same, my doctor refuses to believe it's Endo because my worst pain and fatigue is mid cycle. I also find that "being too tired" doesn't really cut it as an excuse, unless someone has experienced fatigue like it!

I take iron supplements everyday, eat healthily, avoid caffeine but nothing really helps.

hope you find answers soon x

[poppy75]

I also was told my iron levels were fine but I was completely fatigued. I decided to try a good iron and vit c supplement anyway plus a b-vitamin complex. It may be a coincidence but the fatigue isn't half as bad now and it was debilitating. My periods became lighter too. Speak to someone who can advise at a health shop. I explained my situation and they suggested taking iron daily for a month, then a month off, then back on. Do mention it to your dr though if you intend to experiment.

[Rockflower]

Hi, just wanted to post and say I also understand, though for slightly different reasons. I have always struggled with feeling tired as well, but had chronic pain for years and put it down to this. I wasn't diagnosed with endo until 2012, but suffered symptoms for a good few years before this. It wasn't until i did research after diagnosis that I found out fatigue can be a symptom and it can be debilitating!

In 2013 I had a virus that completely knocked me for six! Started with dizziness, temperatures, headaches and extreme fatigue.... Sadly my symptoms kept on going and I also developed tinnitus and chronic pain behind my eyes and had bouts of nausea.... It was very strange and scary, and my GP did lots of tests over weeks, to rule everything out (even had brain MRI due to some neuro symptoms and the headaches). As a result it's been decided I have chronic fatigue syndrome or M.E.

I have since had to adapt my life drastically as the fatigue means I'm quite limited to what I can actually do. I work part time and can't exert myself too much. If I do I end up 'crashing' the next day, unable to move much from the sofa and need to sleep more. I used to do lots around the house...decorating, gardening etc. But now I struggle to do light tasks or activities. I rarely go out to socialise, which is sad and frustrating.

I do think my endo (which is stage 4 and causes daily pain) is a big contributor to my fatigue. It is exhausting having a chronic condition, especially if it causes pain as well. But I think the fatigue is due to some sort of chemical/hormonal change in the body due to endo!

I would also ask you GP to also check your vitamin D levels, these being low (which is common) can cause fatigue. So if you get your bloods done then get this checked as well. Mine were really low.

You are not alone, I'm sure many ladies with endo suffer from the dreaded and sometime debilitating fatigue! Hopefully you may find more answers to the cause and be able to get treatment to ease this symptom x

[mylady77 in reply to Rockflower]

Hello,

I too have an ME diagnosis, and adenomyosis, and suspected endo - awaiting a lap.

I saw an Occupational Health Nurse and she recommended a technique called 'pacing' which has made a huge difference to me. It's common sense really - all about sharing out your energy wisely - but great to be able to mention to people as something proactive you're doing to manage the fatigue. Some people have taken the fatigue more seriously and stopped seeing it as an excuse if I explain this technique to them - probably because in doing so it gives them information about the impact extreme fatigue has and how it does require 'managing' but in a more positive context - I'm not just lazy and I am doing something about it!!

You can google 'pacing chronic fatigue' to find lots of helpful info.

Best wishes x

[Hidden in reply to mylady77]

Thank you for this advice. I will give that a google as not heard of that before. Very much appreciated xx

[Hidden in reply to Rockflower]

Thank you for your response. I'm sorry you went through such a tough time. I think besides eating healthy etc. I need to go see my GP and get some blood work done.

I've often felt like going part time with my work because I feel like I can't do full days but I just can't afford to unfortunately.

I will make an appointment with my dr and see what they say.

Thanks again xx

[Wind_mill]

Sorry to hear you are struggling. I get really bad fatigue too and every so often I "crash" and have to go to bed at about 5pm! I literally get to the point where I just can't continue to function. I have always pushed myself to keep going but sometimes I just can't. I find its a fine line as when I stop doing stuff I find it harder to get back into it and don't want to enter a slippery slope! ive been to a really good nutritionist and am taking loads of supplements which are really helping so I would suggest that. And also exercise really helps me (even though it tires me) it helps me sleep better and I feel more rested/ more energy. Quitting sugar has also kept me on a more even energy level.