Not an ounce of energy

[Masiemay]

Hi friends

New to this but just need some suggestions for this overwhelming fatigue

Minial housework just too much I feel as though people just think snap out of it

Gosh how many times have I wished I could any suggestions would be appreciated

Thank you

Masie may xx

[Hidden]

Hi Masiemay, I wish I had the answer to that! I never was a big coffee drinker but now I drink it all day. Sometimes a half of small energy drink when the weather is way to hot. I don't like depending on them but I need to get things done. Fatigue is my biggest complaint I can take meds to take the edge off pain but pacing is hard to follow for the extreme fatigue. Take care chris

[Masiemay in reply to Hidden]

Thanks Chris

I too have coffee and energy drinks I then get a small burst of energy but it doesn't stay long hope you have a good day

[harmony2]

I just have empathy to offer. With genuine acknowledgement that this is life-changing. I am very sorry this is worsening for you.

I mean no offence to mention spiritual things but just to say how I am proceeding:

Lately I pray a lot for the grace to grow in acceptance of debilitating fatigue versus spending energy unwisely to fight or try to over-ride it or being unwilling to acknowledge that this is my current reality. Another prayer request is to be able to see something redemptive to come from this.

With your limited capacity you have done well to reach out in a safe and understanding venue. To avoid isolation is critical. You are not alone.

[Hidden]

I have no idea if this worked just for me or if it’d work for most people so I’ll just say what I did.

For 4 years I’d been feeling awful, in bed for part ( sometimes most, occasionally all) day. The fatigue was awful, pain in my back, ribs, shoulders and my legs felt like lead weights. I can remember crying when trying to walk my dogs, it took so much effort. I lost count of the number of things I’d cancelled because I simply didn’t have the energy to go for coffee, or to the cinema or even drive the one mile to a theatre when I’d bought an expensive ticket in advance!

Someone ( and I so regret not noting their name) posted on here about research that had shown enzyme deficiencies prevent some people absorbing g the vitamins in their food, especially Vitamin B1. I looked up the symptoms of B1 deficiency and there I was on a page. I started to take 2 x 100mg B1 per day, along with 1 x Selenium, 1 x folic acid and 1 x CoQ10. After 3 weeks there was no change, I almost gave up but thought I might as well finish the bottle I’d bought.

Another week and it was like switching a lightbulb on. I felt different, the pain was almost gone. I didn’t go to bed during the day.

6 months on and I can now walk for up to 2 hours with no fatigue, no pain. My average step count has gone from 2000 a day ( and sometimes it was nearly zero) to about 9000. I don’t need to go to bed during the day and apart from the odd headache ( which I’ve always had) I’m 97% pain free. Occasional shoulder, back pain but nothing like I used to be.

Now I’ve no idea if I was misdiagnosed with fibro, did I have B1 deficiency? I don’t know but as far as I have read I understand B1 is a water soluble vitamin, so you cannot harm yourself by taking it. The other vitamins I take also seem safe to me. And I now take at most 1 paracetamol with 2 aspirin a day for headaches ( with Sumatriptan PRN if it’s a migraine setting in)

It might be worth others trying this for a month or two. it’s a fairly cheap regime to try and might just help.

I’m not medically trained but there’s plenty of info regarding vitamins online.

[JB31]

I get fatigue as as well and sometimes it’s worse than the pain. It’s difficult to explain to people who don’t suffer from it. It’s more like total

Exhaustion rather than tiredness. Mine usually comes in bouts of 3-4 days at a time. I try to just pace myself and nap if I can. Difficult when you work full time.

I don’t drink coffee as it can cause side effects with medication. I know it doesn’t really help dealing with it but you aren’t alone in having to cope with this.

[Stanleydoggy]

Hi

I would say it takes practice. I now do yoga every single morning for 45 minutes, or more if I can manage. It hurts but it means I can walk And it help keep me mobile! I now know that after that I can do physical work until about 1 - 2 pm when I have to complete household tasks. After lunch I sleep for about 1 hour or more (usually more) and then I do seated or pottering about tasks for the rest of the day. I drink at least three cups of fresh coffee to wake me up and take green powders (these help) and vitamins D and magnesium etc. It’s very hard work and I cry a lot from the fatigue and the fact that others just don’t get it, however, I completely understand. All I can say is you have to work hard to find what helps you and NEVER give up.

[Pbyllis]

Hi this is how I feel all the time you just have to take each day at a time some days you ok then next can't even get dressed .🌷

[Masiemay in reply to Pbyllis]

Thank you for reply I am trying to take each day as it comes it's great when o feel I can do bits around the house makes me feel as though I've done something have a good day 😊

[fightingfatigue]

Hi Masiemay,

I have vitamin B12 injections every other month (before lockdown) prescribed by my GP. I wouldn’t get out of bed otherwise. Before having them my blood tests came back as normal but I wasn’t absorbing the B12 and so I have the injections. I still have fatigue but it’s so much better. On good days I actually feel normal but tend to over do it and then have pain so I still have to have a balance with any activity. I also take vitamin D3 25ug every day.

I hope this helps , it certainly helps me

[Alanna01]

Sorry just giving virtual hugs. Same here. I am in bed typing this. Felt exhausted just making myself a cup of tea. And I had a rare good nights sleep so I actually feel worse as usually everyone will ask me how I slpet as in their minds its a simple formula

Slept badly = feeling tired

Slept well = should be better (so why is she still complaining?)

I really understand and my kitchen is embarrassing but no ones coming round thank god.

So sorry, just rest I know it is frustrating but you simply can't push when you hit rock bottom. It is actually dangerous and you need to stop. xx

[Melter]

Hi. I only do what I'm able to do and nothing more. And it isn't very often I'm up to house work, you will learn to live with it, I've was diagnosed over 10 years ago and it has took its tole on me that I had to retire at 55.

I am on Palexia painkillers as Tramadol stopped doing as nything for me my body had got used to them I was on them that long..

Always rest when you need to don't push yourself to far or you will be in bed for days.. Hope this helps a bit..

STAY safe x

[Masiemay in reply to Melter]

Thank you so much I know it's sad but nice to hear that there are others who feel the same I had to also leave my job which I loved (nursing auxiliary) but just couldn't keep doing my work to the best standards (I give my all to the patients) but it was just completely exhausting

Take care hope you have a good day x

[Crocheterloveslife]

Hi I find the fatigue is sometimes harder than the pain to bear. I went on a course once & we were asked to state the moment befire we got the first symptom of fatigue. Seemed quite ridiculous to our grouo because all our suggestions were countered with: no that's too late, before then!! I wish I could think of something useful but it hits me like a bus & I can't move. Over the years I've come to accept that some days I am useless & have to sleep/rest a lot more. Coffee etc doesn't work for me at all. Big hugs to all of you x

[Catsnoop]

I have this problem too and have fought with it for years. Lots of coffee in the morning and none in the afternoon, and rest. I know it sucks but anything else just makes it worse. I do my housework when I can. All of a sudden I can feel much better so will get half an hour of chores done, then I’m spent again. I work, so my nights and weekends are spent recovering. I feel so lazy and go through times where I give in to those thoughts and force myself to do stuff but I always pay the price. I’m not lazy, I’m unwell.