FATIGUE

[Thebonecollector]

HELP, how do you people cope with fatigue, what do you do and what can I take, just feel so exhausted and weak. Totally fed up with it.

Thanks

[Hidden]

Hi,

I do so sympathise. Sleep is a key to helping with this. I was given very low dose Amitriptyline, taken in the evening, which has helped with headaches and sleep. Between that and learning to not only plan my day but week too, the fatigue is more under control. It is still very frustrating when it descends, but find if I heed early warning signs it does not get as bad. Also a change of mind set from being the non stop person I was to accepting it is OK to stop has helped too. The latter has taken a while to achieve, I fought it for a long time. You may well be doing all that already but hope it helps. Best wishes

[Thebonecollector in reply to Hidden]

thankyou, I’m being sent for blood tests and back to the rheumatologist just feel so useless I know it will pass eventually but feel like life is passing me by.

[Smithy32]

It's definitely hard...I often have to give in by napping briefly on the sofa just to get past the real eye shutting point.Other than that I try to keep Bust, harder when it's raining though.

I hope you find ways to cope my friend.

Joanne

[Thebonecollector in reply to Smithy32]

thankyou, it’s just so hard, I’m not used to doing nothing, very frustrating.

[Smithy32 in reply to Thebonecollector]

Neither am I, I'm 58 and worked full time since the age of 16 and always had quite physically demanding jobs including running pubs...but we have to face what life brings with positivity as I assure you it makes a difference...find some hobbies for the house just to keep your mind active when you can't keep physically active....that's what I've had to do. X

[Thebonecollector in reply to Smithy32]

thankyou, I have indoor hobbies, I’ll just have to do more of them, till it passes.(soon hopefully).

[Smithy32 in reply to Thebonecollector]

Wishing you well x

[Kryptonite59]

Feel for you. Sounds like you’re just starting on a long and unforgiving journey. I used to be a keep fit fanatic and on call family odd job man at the same time as running my own business of thirty years plus. Now I can do nothing. You’ll have dark moments , but accept this isn’t your fault and you’re going to have to live with it. Fortunately everyone is different and you might not suffer too badly. On the other hand, you may feel like it’s the end of the world. Tell people you’ve got it and how badly it makes you feel. Don’t suffer in silence. Sometimes just a hug will make you feel a little better. I hate taking tablets, but now have my own dosset box full of them. Sleep when you need to, for as long as it takes. It’ll drive you crazy initially, but with the right medication, it will eventually ease. Take maximum pain killers for pain. The pain will wipe you out. You have to stop trying to do the things you used to do. If you don’t you’ll suffer big time. This is a life changing disability that nobody seems to know much about. Don’t think on the good days you can try doing what you used to. Done it, got the t-shirt and had to throw it in the bin. You’re fighting a war and every day will bring a new battle. You’re part of a reluctant army in a never ending story. Ask for help when you need it and keep your head up. There is light at the end of the tunnel, but it’s a very long tunnel. Pester your doctors. Start a log of all your ailments. You might start forgetting things and you’ll no doubt be seeing a lot of different doctors who will all ask the same questions over and over again. There’s no shame in crying either. If you need to, let it happen. You’ll go through long periods of inactivity, so get your heart checked. Buy yourself a blood pressure monitor. After a year of doing very little I ended up having to have three stents put in. They said I could have dropped dead at any moment. Keep fighting and never give up. Good luck .

[Thebonecollector in reply to Kryptonite59]

thankyou, so much of what you written rings a bell, I just hope it doesn’t last too long. I have a lot of books to read if I can stay awake. Never give up I’m a fighter.

[Turquoisesummer]

Hey! I want to write a post about what I'm gonna say because it's the only thing I've done differently in the 6 years that I've had fibro (but also it was really hard to begin with), but since I've done this I've gone from being barely able to walk to doing cardio and weights at the gym for 2-2½ hours a day, although my sleep is still terrible to non-existent (but I think I've found something natural that might help there, too, that a gym friend suggested) and I still haven't been able to return to work.. my pain is mostly now in my face/neck/tongue/collarbones/jaw and my fatigue has gone way down although I still struggle in the mornings.Cold showers/cold exposure!! I don't know if it will help everyone, but I heard so much about the benefits (and literally dreaded the cold and felt cold as actual pain lol) that I forced myself to try it bit by bit. And in 2 months I've gone from feeling hopeless and being unable to do basic daily tasks and household chores to doing my housework + walking my dog and training at the gym in the evenings...

I started by breathing through cold showers after the sauna (oh, and the sauna is essential for me and I don't think I could have done cold exposure without the help of the sauna!), then cold showers in between sauna breaks (10 min in sauna, cold shower, 10 min in sauna, cold shower), then cold showers for as long as I can handle at the end of my daily morning (super hot) shower lol.

I don't think it matters how you do it, as long as you get cold exposure in whatever way works for you. But as I said it's the only thing I've found to make the biggest difference when alternated with heat (I've been doing sauna and heat packs/hot showers and baths for years because they helped the pain, but since alternating with cold I've had a big recovery!).

Someone today told me that heat and cold shock your nervous system and help it adapt to the extremes and I thought that really makes sense as fibro is a nervous system thing (our nervous systems are stuck in fight or flight).

Hope this helps! I find heat relieves pain, then, as you build your tolerance (if not already tolerant), cold fights the fatigue.. and with both daily it fights back the fibro symptoms bit by bit. I'm still hoping to get better enough to work, but my sleep is a different issue, I live with very loud, non-empathetic family members, plus have ptsd 🙃

All the best!!X

[Kryptonite59 in reply to Turquoisesummer]

I’ve seen programmes about the benefits of ice baths and cold bathing. You have my respect for trying it and I’m glad it works for you. I’ll think about it again, but definitely won’t look forward to it 😂

[Cotswolds25121]

hi, it is one of the worst parts of our condition with fm🥱😪as anyone who hasn’t even got fm knows sleep is a vital part of well being and whether it is lack of sleep or sleeping too much is detrimental to anybody’s health. It affects everything, concentration, mood, etc etc. I have sleep apnea as well as fibro and other chronic conditions and it is a pressure cooker for want of a better term because it is a very sensitive and difficult mixed bag. It plays with your emotions and everything else 😢to the point that along with the brain fog renders you unable to get through a day! Let alone having to work on top is just exhausting. Mental health alongside that and other things is a constant real struggle every single day. I get so angry at the pension age rise because I should, which was all my life time the age I was due to retire at 60! Now means I’m expected to work as a carer in my circumstances until 66! I’m 62 now and I have had to drop every other Wednesday a year ago and due to pain all over and my x ray results I am now dropping every other Monday, because I am not able to do the moving and handling of service users 5 days a week anymore. The problem is with the government introducing the length of retirement ,people are having to reduce their days and can’t afford the living expenses because we are losing so much of our wages but have no other options. It’s disgusting and disgraceful after working since 16 years of age 😡😡sorry for the rant just needed to get it off my chest

[Thebonecollector in reply to Cotswolds25121]

it certainly it, so many different things to suffer. I’m sorry you are struggling with work, I too had to wait until 66 for my pension which I got in January (only 6 yrs late robbing gits ). Hope you can get some financial help ask If you qualify for PIP or ESA thru DWP good luck.

[LisaSnow FMA UK Volunteer]

Yes fatigue is really tough to beat. Even with good hours of sleep I always wake up tired and never energized. Wish I know an effective solution too.