Fatigue??

[lukerlicious]

Hi everyone, as fellow endo sufferes, Do you suffer with fatigue?? I'm literally always tired, to the point where I feel like i'm dragging my knuckles! My diet is top notch, I drink loads, I exercise, yet I feel like a sack of spuds. Have any of you got any tips for upping my energy? It's really affecting my job, as I struggle so much with tiredness constantly. xx

[Impatient]

Oh yes..and as for cures I haven't yet found anything to help. Monday Holiday -went out with the family - managed to stay awake throughout, but came home shattered and slept 16 hours right through, hadn't changed for bed, hadn't even drawn the curtains closed. I lay down for a much needed nap and woke up 10am next morning.

Not the first time that has happened, but I do keep my days out to one or two a year as it takes so much out of me and takes so long to recover from. That wasn't even doing anything adventurous, just walking round a museum and a picnic in a public park.

There was a time I could go hiking for several days up and down hills and tors, and could work 18 hour days, day after day, but that's another life now.

[lukerlicious in reply to Impatient]

I can so relate to this!! I go out for the day, and an hour in I want to lie on the floor and go to sleep! I used to be an exercise junkie, but now i'm lucky to do a full 30 mins on the bike. It gets me down as I feel that everyone think i'm just lazy and sleep to much. I just can't explain the fatigue to them, its like someone has just drained my batteries.

I get so tired at work I want to cry, but I feel like I have to push on, worrying that everyone will think i'm not pulling my weight. I had my operation about 12 weeks ago, but the fatigue was going on for years prior to it.

When I first met my bf he was always telling me 'you sleep too much' 'why do you got to bed at 8 o'clock??' but now he's finally realised its part of the condition.

I've tried various supplements, but to no avail!!

[Nicci9904]

I can sympathise with you. I struggle with fatigue too, unfortunatly I have to stay alert as at the moment my husband is serving over seas and has been away since January and I am home alone with two children and I try not to let it effect my work. My managers are aware of my endometriosis and as I have given them alot of information they are extreemly understanding.

I'm usually on my feet from 6.30am until around 8.30pm when my youngest goes to bed.

I haven't found anything that gives me an ounce of energy, I wish I had, as I go in and out of sleep most nights with pain so that doesn't help matters.

We just have to try and stay strong and positive......I know its hard, but, we can do it and we can cope, good support networks do help so its always good to talk to those around you about how you feel.

[Barders]

I totally understand how you feel. I feel exhausted most of the time. I have felt very, very tired for a long time, but the exhaustion hit a new level when the pain started to get really bad a couple of months ago. I was in so much pain all cycle that I couldn't walk. But just before it got this bad and when the pain was really quite low-level through most of my cycle (I was only taking over-the-counter painkillers at this stage), I began to find I couldn't walk far. I would get very dizzy and hot and breathless and would have to sit down and rest regularly to get anywhere. Stairs and hills became a real challenge. Before this I was very fit and regularly went running.

It's 3 weeks now since my laparoscopy, and I now know I have endo. My GP has taken the time to explain to me why it was so horrendously painful, and I am getting used to the diagnosis. Though my first period was horrendous (I hear this may well improve), the pain is now much, much better the rest of my cycle. But the exhaustion, dizziness etc is as bad as ever. I am also getting more migraines than I ever have before. I am back at work part-time, but finding it very difficult concentrating in meetings etc, and the journey to work can be a bit of a struggle.

I have heard very good things about the endo diet for increasing energy levels as well as reducing pain - especially cutting out wheat and cutting down on dairy, particularly milk and cheese. I've decided to give it a try. (The full diet is pretty horrendous, but I want to try cutting out wheat first before going drastic!) Maybe that might help you? It's too early for me to say if it works for me, but a family friend who has bad endo swears by it. She says cutting out wheat was the key for her and dairy didn't make much difference in her case, though a friend of hers said also cutting out dairy helped. I feel like if I'm sensible it won't do me any harm and it may really help. Perhaps it might help you too.

I wonder if I could ask a quick question too as a newly diagnosed endo sufferer to others reading this post:

- Did you find the exhaustion reduced eventually after treatment of the endo via laparoscopic surgery?

- Does anyone have severe tiredness, but not have anaemia? My GP is a bit stumped by this. My bloods repeatedly came back fine, but I can't describe how tired I feel. I do have low BP and wonder whether this might also contribute.

Thanks ladies. I wish you all well and hope you're all enjoying the beautiful Spring.

[Tink80]

Hi there,

I have to echo all of the above comments. I suffer terribly from exhaustion & somedays can only just manage to go to work & when I get home I just want to go straight to bed but I try to fight it for my husband's sake. I feel so guilty that he takes on so much in the house.

To answer your question Barders I have had two laps and still have the tiredness and my doctors don't get why I'm so exhausted as I'm not anaemic. I think sometimes people think I'm either making it up or exaggerating but I wish that we're the case! I had to take the day off work sick yesterday just to get more sleep as I've had a really hectic few days & I don't sleep very well with pain waking me up.

I am doing the wheat free diet and taking loads of different supplements. They have helped my pain A LOT in that previous to the diet the pain was constant and extremely intense but now I actually have days where I am pain free which is so amazing but I'm still struggling with the tiredness.

Good luck with everything & please just give yourself the time you need to rest when you need it. Don't be too hard on yourself.x

[mcnielal]

Thank you for bringing this topic up! While I have pain, fatigue is by FAR the worst symptom I've had to deal with. Before I was diagnosed last October, I had gained about 30 lbs because all I could do is sleep all night, then nap the next day. On top of the fatigue, the mental issues start! I felt like I was inferior to others cause I had zero energy. I would be in tears driving to work (I'm a waitress) cause I felt too tired to walk. My husband would ask me if I wanted to meet friends out the following week but even the THOUGHT of having to hold a conversation gave me anxiety!

To answer one question from above, I have been tested for anemia (especially cause I was vegetarian for a very long time) and it always came back negative.

What helped: first, I was put on phentermine to help with the weight gain and fatigue. This drug made me feel alive again!!! A year later, I am still down 60lbs. This is not a drug you want to be on long term.

Next, I did start eating meat again. I follow the Endo diet except I still eat cheese and milk and occasionally have an alcoholic drink. No wheat, gluten, caffeine. I've cut down on dairy and processed foods. This made a difference in my frequent bloating and tummy aches and a little in my energy. If I followed the Endo diet more strictly, maybe it would have a greater effect? It does have an effect anyhow, and in general is a great way to eat.

Finally, my awesome primarily doctor put me on Welbrutin. I never thought I would be on an anti-depressions and anxiety medicine but it works wonders for me. I am diagnosed with anxiety and I'm sure having Endo exsaperates the condition. Luckily it also has a mild stimulant I keep me going! When I don't take anything to help with my energy, I almost immediately fall back into fatigue.

My doctor explained it like this: our bodies are working so hard because of the Endo and the havoc it causes to our immune system - that out bodies are working very hard to try and keep us normal. Hence we are exhausted from this hard work that's going on that we can't see. Makes total sense to me. Good luck ladies!

[Jen88]

I am so glad its not just me! Everyone thinks I am just lazy as I have no energy during the week after work all I want to do is sleep.. I have just had my second zoladex injection and I do feel like it is getting better, when I wake up in the mornings I tend to feel like getting up and not sleeping for a bit longer. I find it hard as no one around me suffers with endo and they have no idea how it can truly effect one person.

x

[Chiligirl]

Hi there, yes yes yes! The main thing spoiling life for the last couple of years. I had major excisional lap 3 months ago and sooo disappointed not to have kicked the fatigue

The latest on this however from my surgeon is that he believes of to be a huge hormone imbalance. Has recommended I swap from Microgynon to Yasmin (I'm tricycling the pill) to see if that helps. I will update the forum once I've given it a few more weeks. I think the theory is that endo messed my hormones up and Microgynon is not helping me get them back to balance...

I'm also a super healthy eater and an exerciser (for work and for the dog!). Avoiding wheat and sugar seems to help me a bit and I'm also trying alternative therapies to try to balance hormones too.

Are you taking any hormone drugs eg the pill? Could it be that sthg is not agreeing with you and your hormones like it seems to be with me??

Xx

[tinker241]

oh i do get very tired too.. i am up from 4.30 am to 9 pm sometimes i go over which is not good at all but i do take magnesium which does help a bit but at the weekends i sleep long hours... which is very nice and also i had a nice long weekend from last Saturday to Wednesday i slept a long time which is very unusual for me as i normally can sleep long hours like 10 - 12 hours for at least 4 days but it carried on for 5 days now which is weird... but i work all day... so i can see that tired is very common for Endo sufferers and it is not fair as your body is knackered with all that pain... even though when some cant sleep at night... so hope you feel better soon x

[MrsGizzard]

I'm the same, especially the anaemia. Gave up wheat, dairy, which REALLY helped the pain. Came back from my (diagnostic only) second lap to find that I'm now struggling with even gluten free bread, (presume its the yeast), coffee and jam! Gosh my diet is dull ATM!

After I had my daughter, I lost a litre of blood and was still not aneamic! I have only had slightly low iron levels once and that was when she was breastfeeding in the early days. Extra iron does help even when there's no sign its needed.

BUT here's the thing, until breastfeeding I'd never had my Vit D levels tested. They are always slipping back down is I don't take a supplement, however good my diet. I wonder if this is something you ladies could test by trying a supplement. Not just the one in your calcium but a separate one?

[Barders]

Thanks ladies for the answers to my anaemia/lap questions too. Really helpful. Hope you're having good weekends. Xx

[Liverbird01]

Hi, this is my first time on a chat site so bear with me.this week seen my dr., am now on 50..//..mg levothyroxine had to reduce to 25mg, has given me the poops. Have so,so, tired for a long time , am hoping doctors can make me feel better. but yes tiredness is not a nice thing to have to cope with..I, think we are all trying are best to get better but its a REAL STRUGGLE TO SAY THE LEAST.. THANK YOU TO ANY REPLIES

[sireland]

I TOTALLY understand this. My fatigue is getting worse and worse, to the point its starting to interfere with my work and my social life. I used to survive on 6 hours a night and be absolutely fine. But now I am always tired. My daily thoughts revolve around when I can get back to bed which isn't normal for a 27 year old!! I excise, I meditate, I don't drink and I eat [reasonably] well. I've tried supplements and vitamins, but nothing but sleep seems to work! The worse thing is, I've never slept well (I sleep in intervals and wake up about three times a night), so even if I get to bed early, its never a restful sleep.

Ho hum, pass me a coffee!!