Just wondering if any one else suffers from bad fatigue? I feel like I have zero energy all-day everyday and it's so frustrating. I wake up and feel exhausted and it a stays that way through out the day. I sleep for a good 8 hours at night and I nap for a solid 2 and a half hours nearly everyday and I still feel like I haven't slept in days. This has been going on for years but it seems to be getting worse.
My GP says it's down to being in constant pain and having bad inflammation from Endo but she didn't give me anything for it. How do others cope with this? Has anyone got any tips on what keeps them awake? I drink a lot of coffee when I'm not supposed too but I feel like nothing else helps.
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Coffeebeann
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Hi,
I’m so sorry you’re going through this. I was diagnosed last year with M.E after various tests for MS and other autoimmune diseases. The fatigue was crippling, I couldn’t get out of bed some days. (Now wondering if it’s down to my suspected endo). I would sleep until 3pm solid and I wouldn’t even get up to get a drink or go for a wee because I simply didn’t need to - it was like my body just shut down on the worst days.
I lost a full time job that I loved and I was so depressed. I still have days like this and I’m still very down, but it is getting better. But on high pain days it is worse.
I now work part time in a health food shop, and whilst (even though I work there) I don’t think everything in there is a miracle cure (I still think homeopathy is a load of bull) there are certain things that help.
If you don’t take them already, a good strong B Vitamin complex really helps. Try and keep your immune system up with Vitamins D & C.
You’re probably right about coffee not helping long-term, I’m not a coffee drinker myself but I turn to sugar when I’m exhausted and it does make me crash after a while.
Try and establish a consistent sleeping pattern if you don’t already, and try light exercises. I find yoga is really helping me at the moment.
Good luck, and don’t push yourself. I know I have to compensate for things I do and almost ‘ration’ my energy levels. If I happen to do overtime at work then that’s pretty much my week gone in terms of other plans. But that’s just the way it is sadly.
This condition is draining us at all levels. I have been taking Magnesium glycenate/chelate as this is the one that is best absorbed by the body. A lot of magnesium supplements have low absorption by the body. The benefits are not immediate, it takes a few weeks, months. Vitamin D also helps with the immune system. Have you checked if you are not anaemic? The Ferritin levels should be ay 70 (European norms advised to me via a UK nurse). A cup of coffee provides your body with 73%of your daily intake of oestrogen which is the last thing we need. I drink decaf coffee, it also reduces cystitis, whereas like you, I used to drink quite a lot of coffee. Coffee also reduces iron absorption. It's best to avoid all caffeinated drinks (tea also contain a lot of caffeine), you could cut down gradually. I know it's difficult and sometimes I did get headaches, but it is better in the long run. Some iron supplements can cause constipation (sorry, tmi) but you can ask for one that is gentler on digestive system.
Thank you so much for replying. I'm so sorry to hear this. You've been through so much, its awful.
When you go to your GP and tell them it's affecting your daily living I don't think they actually realise how much. Everything is such a massive struggle. I'm studying at University and had to move away for it and trying manage everything by myself is so difficult. I've been told several times by my lecturer to take the year out until I'm better but I genuinely don't know how long its going to be before im properly diagnosed and given the proper treatment because as of right now I'm currently waiting to get tests done as they suspect that the endo is within my bowel and bladder but they're unwilling to push it forward and do anything right away because I'm not going to die from it. It's horrific and while im waiting I'm in constant pain and feel like I haven't sleep in days. I barely socialise and the last time I did I ended up in absolute agony and was vomiting from pain for nearly a week before I gave in and went to A&E who did nothing.
Have you spoken to your GP about this? Surely they need to get to the root cause of it. It's unfair how badly you've been affected.
I try and have a regular sleeping pattern, but I wake up a lot during the night due to terrible lower back pain or if I roll onto my stomach I end up with sharp shooting pains that wake me up as well. I totally understand what you mean by rationing your energy. I need to be careful with how much I do in a day because I end up exhausted and sleeping in as well as being in so much pain that I can't move. It's terrible what we have to put up with, with little help.
I hope you're well today xx
Hi I do as well it’s awful. I can’t offer any advice just sympathy really. Unfortunately chronic fatigue is one of the side effects and i find it the most debilitating out of them. I don’t find drinking water a lot does help. I get in that slump thou of wanting sugar when I’m tired which then makes me more tired 🤦♀️. I hope you find something to help you xxx
Thank you for replying! Yes, its awful. The pain I have everyday is something I can ignore to a certain extent and get on with my day the best I can but the fatigue is something I just can't seem to fight.
Getting up in the morning and doing my daily routine is a literal battle with my body. I'm so sluggish and feel like I don't want to do anything but sleep.
I've also tried drinking more water, eating more fruit etc. but none of it seems to work at all.
Yes! About half an hour after I drink my coffee I feel even worse and I end up falling asleep for hours.
You just feel like you're wasting your life, sitting about with zero energy and sleeping constantly.
Definitely get your Vitamin D levels checked! Mine was really low (ideally we should be over 100, mine was 40) and I took a high dose of supplements (prescribed by doc) for 8 weeks and it made a huge difference. I take it every day now just in case.
I'm glad they managed to find that out and help you! Being tired all the time is a nightmare. I'll definitely ask my GP about this. I've had several blood tests done for different things but I don't remember them testing my Vitamin D levels. Thank you so much for your advice! xx
I'd second the vitamin D testing as I was the same. I asked for the blood test and it showed a deficiency. Now I'm on a high dose supplement I can get through most days without sleeping in the afternoon! Also I have been using a CoQ10 supplement which I take first thing. It plays a role in energy production in the body and I feel it's helped me so might be worth looking into. X
I used to suffer from lots of fatigue but have managed to reduce it significantly through changing my diet and exercise, taking a Vit B complex and using Magnesium spray in the morning after I shower and soak my feet in Magnesium flakes at night and I do this daily. Hope you get some relief soon.
Thank you for replying! I'm glad you manage to reduce it! Did you change your diet to a vegan/veggie one? I've been told that going vegan is best so im currently trying to change my diet. As for exercise I find it so difficult because I'm often left in terrible pain. I try to do light exercise like walking places instead of taking the bus and im looking into doing some Yoga as well.
I've never heard of the Magnesium spray or flakes before. I'll definitely be looking into them! Thank you so much for your advice! x
I haven't gone veggie or vegan completely but I am eating a lot more vegetarian/vegan meals. The first thing I was encouraged to do was cut out all dairy, which I did, I have reduced my gluten intake, increased omega3 intake through salmon and walnuts, trying to increase veggies at present.
I order some of my meals from a company called the Mindful Chef, you pick what meals you would like, they provide the ingredients and the recipes. It does cost you but I found I had so little energy to eat well, this really helped me kick start things and maintain it. I also keep a diary of the food I eat and my bowel/bladder movements for the day as that is where I experience more pain. That has helped me to determine what foods have an impact.
I like you started with light exercise, such as walking and swimming....sometimes I would just go to the pool and don't use my legs due to the pain. I found hot yoga too which I love. The change in diet helped to reduce my pain, this then allowed me to increase my exercise. I still have some painful days but they have reduced down to about 5 days a month only!! When I am in pain I force myself to do some gentle pelvic exercises. The exercises I do are from the book Beating Endo, it is worth the read if you haven't come across it. The magnesium spray and flakes that I use are by Better You.
It does take time but well worth it.
If you have any more questions please ask. Wishing you all the luck.x
Yeah, my GP has also told me to cut out dairy and gluten as well! I'll need to look into the Mindful Chef as Im finding it difficult to switch from cooking my normal meals to veggie ones. I usually end up eating vegetables and rice haha!
Thats where I get a lot of pain as well. Do you find that your lower back is constantly in pain? I also have cramp for about half an hour after I go to the toilet its awful.
Thats amazing that you have managed to reduce your pain by that much! It must make such a difference!
I'll have a look for the Beating Endo book, several people have said its really helpful.
Thank you so much, I'll need to get some to try!
Thank you for all your help as well it's really appreciated! xx
You sound alot like me hun. I am always tired and have no energy at all.
I'm rarely having any days off from the pain now so I just put it down to that. Its exhausting being in pain all the time and trying to do daily things.
Thank you for replying! Yes it definitely is and it really brings you down. I'm sorry to hear you're in pain everything and I can totally sympathise. I'm the same. Constant pain every day with literally no relief. I hope you're feeling okay today and get the help you need soon! Take care of yourself xx
Thank you. Been diagnosed 7-8 years now. Had two surgeries and two diagnostic laps. I'm now grade 4 severe endometriosis. Its entered my bowels and possibly bladder as well as all the usual places. I also have rectovaginal endometriosis. Got to have a dissection for this and i'm waiting on complex surgery. Booked in on 2nd jan. Been cancelled 4 times though.
Bowel surgeon, endo specialist and bladder surgeon if needed. Been told I may need a stoma bag. Its destroying my life. I struggle everyday. Cannot wait to just get it done with now. They keep offering me the hysterectomy but I'm only 27 so not mentally prepared for that yet. Will have to see what the outcome on my next surgery is. Thanks hun. Xxx
I'm really sorry to hear this, that sounds absolutely awful. I really do not understand how they can allow it to become so bad. Do you mind me asking what your symptoms are for bowel and bladder? I have been told I may have it there also but im waiting for appointments to get the procedures done to see.
I don't blame you, as if having the laparoscopies done aren't nerve wracking enough, being told you need complex surgery sounds so terrifying.
I don't blame you, you're still so young to have that choice of children taken away and if it can be avoided I wouldn't want it done either.
Fingers crossed all goes well for you in January and they're able to remove it and you're able to live a decent life. Please take care of yourself and take it one day at a time xx
Yes I am petrified if I'm honest, just want it all over with now.
My main symptoms are severe abdominal pain aswell as back pain. Everything I eat or drink, is straight out of me so im low in b12 and vitamins. I'm extremely tired all the time. Most of the time my stool is very loose and and gooey. I have also had blood in that area too.
I'm constantly urinating also. I wake up around 6 times during the night needing to wee.
I got re referred over two years ago from my doctors and in that time they have cancelled me 4 times and one of the days had me sat there from 7.30 until 17.30 until they told me they had ran out of surgery time. I was so deflated. Because of the wait my endometriosis has spread severely. This could of all been stopped if they dealt with me quicker.
Now I'm having to go through hell.
I am trying to be as positive as I can be. Roll on 2 weeks. Thanks hun xxx
I don't blame you, sounds like they've put you through hell. So terrible that they think it's ok to leave you and keep you waiting so long they should be held accountable!
Aw that sounds terrible. I have a lot of the same symptoms which is worrying.
I hope everything goes ok for you in January! Please keep us posted. Hope you have a good Christmas as well! Take care xxxx
I can relate to feeling tired even after loads of sleep. It’s not just I’m tired. It’s feeling exhausted. Where getting out of bed is hard. I have a 7 month baby and I want to be able to give him all my attention but it’s so hard. I have stage 4 endo .
It's so incredibly annoying and frustrating. That is such a shame, it's a horrible illness that affects literally every aspect of your life. This form is genuinely really helpful though. You should ask how others cope with it as well as having a little baby to look after and hopefully something helps!
I have endo and also struggle badly with fatigue! Recently I’ve started taking this herbal supplement from boots and I’ve definitely seen an improvement in my energy levels. It’s called ‘Ginseng, Ginko and Guarana’ - definitely would recommend you getting it!
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