Feeling sooo tired!

[luthien]

Ahh I do not like this symptom of endo; the feeling tired, exhausted, wiped out, like my brain is cotton wool and so sluggish. I just want to hide and sleep! Anyone else feel like this? It's all the time but really bad just a few days before my period. What do you do to cope? Any vitamins etc I could take?

[Lily1986]

I’m exactly the same, it’s rubbish isn’t it? I take berrocca every day which helps especially in the morning but by about 2.30pm it’s a struggle to stay awake.

No energy or enthusiasm to do anything. And so jealous of my Mum and even Grandma who manage to complete several tasks throughout day and not feel tired till evening.

Sometimes a hot bath helps me feel revitalised! But usually a longish nap in the afternoon- which I know isn’t possible when working.

And I can’t function at all in morning without a shower.

Best wishes to you xxx

[Crispy69]

Hi. Please don’t take this as medical advice because you need to let your gynae / GP know how you’re feeling. But I recently read that as endometriosis is an inflammatory disease it releases toxins that make you feel tired, lethargic, achy. I have all of those things and it is horrible. Stops you doing so much. But at least you know it’s not in your head or being caused by something you’re doing. I take Naproxen to manage things. It helps a little bit. Speak to your GP if you can. Good luck

[Lily1986 in reply to Crispy69]

What did your gp advise? Mine just took blood tests and no further action. Maybe need to pursue it x

[Crispy69 in reply to Lily1986]

My Gp referred me to Gynae and I had two MRIs, two ultrasounds and a CT scan which confirmed deeply penetrating endo. I’m now waiting for a date for surgery which is the only way to treat this condition (I think). Naproxen is just to see me through the next few months. I also take Tramadol and morphine for pain relief because I’m in constant pain. I’m on monthly Zoladex injections as well which are horrible!! I’ve heard there’s a book about endo healthy eating by Dr Cook that’s really good. Some food cause flares, aches and fatigue

[Lily1986 in reply to Crispy69]

Ah yeah. I’m so sorry you are suffering so much too.

I’ve been through that, took them 13 years to actually diagnose though and since had 4 operations and same as you deep infiltrating endo on bowel, bladder and everywhere and infertile. Had tubes and left ovary removed but hasn’t made any difference.

I currently have zapain and tramadol and awaiting another chemical menopause and Amitriptyline.

Did your gp give any advice regarding the tiredness?

Best wishes for your treatment xxx

[Crispy69 in reply to Lily1986]

Isn’t it crazy how much we’ve had to go through but it’s not given the same priority as other medical conditions. I was just told to rest and not push myself. Easier said than done when you have to hold down a job x

[luthien in reply to Crispy69]

I've been to the gp, been referred to an endo specialist, had my endo excised. So this is an ongoing symptom I have to get used to, it's unfortunately one of my symptoms that didn't reduce after my two laps - but it's only before my periods so I can cope.

I have full blood tests every year including thyroid and diabetes, all are always fine.

Just looking for anything I can do / take to manage this.

[Crispy69 in reply to luthien]

Sorry to hear things didn’t improve x

[luthien in reply to Crispy69]

It's improved massively, my symptoms have reduced by about 90% which is great, I now only have symptoms for the week around my period Just the tiredness I'm sure is something I could work around/ take vitamins for. I don't do caffeine and keep my sugar intake low but when I get tired / exhausted my body craves the sugar which I'm sure isn't a good thing.

[EndoEffect]

I feel exactly the same. I’m currently not in work because I’m so exhausted that I can’t get out of bed until around 10am at the earliest. And I’m aching and in pain. Horrible. X

[Lily1986 in reply to EndoEffect]

Same, I tried so hard with working but my attendance was awful the last couple of years and now currently employed but signed off long term and seeing as it is impossible to get through the day without strong pain relief and naps I am very worried about what my future holds.

Hope you get some relief from the pain xx

[EndoEffect in reply to Lily1986]

I hear you. My attendance has been awful too. Constantly in fear of losing my job. Also, I don’t get sick pay, because I am a supply nursery nurse. So I am living off just enough money to cover my bills. Thinking of you. Xx

[Lily1986 in reply to EndoEffect]

It’s so unfair isn’t it? My sick pay has just run out and from looks of things the amount I’m entitled to will barely cover rent & bills.

So not only do we have to deal with the horrendous pain, exhaustion and everything else which is hardly our choice we have to worry about money too.

I just hope this current government inquiry into endometriosis has some sort of positive outcome and support for sufferers xxx

[EndoEffect in reply to Lily1986]

I hope so too. 3 years ago I started training as a counsellor. So I am only 4 months away from being qualified. For the last 2 years I have tried to work 3 days a week, go to college 1 day a week and do my counselling placement 1 day a week. I can’t wait to finish and just have work to focus on. I hope that will make things somewhat easier. Because I haven’t been coping well. I’m surprised I have been able to do my diploma at all. I have always suffered with clinical depression, and having endometriosis on top of that is exhausting.

You’re right, the financial worries make me feel sick. I am 30 years old and have had to borrow so much money from my parents to just pay my phone bill or for some petrol for my car. It shouldn’t be that way. And on top of that, a feel a lot of people that are not unwell just think that we are lazy and not trying hard enough when we aren’t able to work. Xx

[luthien in reply to EndoEffect]

I'm worried about the financial side too and we don't need that stress. I'm lucky that my current employer is okay with me working from home one day a month when my flareup is bad - the first day of my period. But as I'm still in my first year in my new job I'm not entitled to any pay when I'm off ill apart from the SSP when over 7 days, but work doesn't pay anything more than that. I'll get my Oocpational sick pay from work after my first year as an accrued pay. Does anyone know how we find out what the work / government rules are about how many days we can take per year in terms of occupational sick pay - something like 14 days per year rings a bell but someone at work says it's 5.