Chronic Fatigue . Does anyone else get the shakes?

Yes been diagnosed nearly 7 year now.

I have tried doing nothing, over doing it a d i feel i found a balance with it all but its not enough. I still struggle every other day. Some days lead to weeks. Its a pain in the arse, which is funny cause thats one of the handful of places that remain pain free aha.

I have cut back at first i did nothing, then eased in exercises. Still had my bad days but being on the sick and doing nothing all day everyday really got to me, i was ready to just call ot quits.

I threw myself back into working, lost a few jobs etc but got tore in. Last few years i found two employers that have so far tolerated and catered to my needs. Between both i found a balance as one just involved majority physical and the other mostly mentally.

I have done almost everything i can and adapted to keep some lease of life.

But i am not getting anywhere.

Hi L1990,

I know its hard being on the sick. It can be isolating and boring at times but, with this silly condition, the balance is so hard to manage and it sounds like yrs is tipping a bit right now? In my 1st year after diagnosis with this I tried to do things as I felt exhausted all the time anyway. I pushed myself. I had put on weight so went to gym-moderate, swimming-slow, pilates and yoga. As time went on, I just couldn't carry on like that. I wasn't getting any fitter? I still couldn't carry things or do much and can't now and maybe I involuntarily set myself back?

Maybe try reducing something? That maybe all you need? You know yourself and as annoying as it is to have this condition, it forces us all to think about what we are doing.

Think about what you may be able to cut back on to ease the strain

B

I find i have a strong hand over maintaining it as much as i can. I can say its not as bad as the first few years. But only the good days. Its during the attacks and up to months after, i have no control and go right back to the starting point.

All the effort, change and positivity then feels pointless.

I do give myself time to sit and relax. I do socalize more than i did and have took up hobbies that require little effort. Back into playing cards and chess. Darts and pool. I sit down and drown out to maybe an hour or two of music or tv and do this almost everynight.

Still to take back up sketching, use to be no bad as a kiddie. Saying it that some would still class me as a kiddie.

These conditions put years on you.

Im 25 and feel 50. Its hard to grasp that i still have 40 odd years left of this life until i can roll over and play dead. I dont think i could cope another 20 years.

I try to live for me and not the condition but its like it takes over the vast majority of it all.

I know, its like some monster lurking in the shadows sometimes! I'm suffering at the moment with head/neck/shoulder pain. Did too much on too many days : / On good days, I dream I'll tour the country educating people In my field about this condition. But the reality for me is that transport slays me! I was, as most on here, a very active person so to spend days in bed is totally against my nature. I too feel my actions are that of an older person which annoys me greatly!

If only there was a break through soon in research! To walk normally all of the time would be lovely : ) what would you want back if you could have one thing?

B

Whilst one the subject, can only ditto what youve both said, l guess l started with immune allergy probs at 33yrs but on and off, last 2yrs worse,and l was never a couch potato, bores me rigid watching tv, not a craft person either, lost concentration to read, but might have a go at painting again, always preferred active even rough activeties, walked miles, scrambled ove fences, heavy gardening, loved music dancing, all missed a lot, but never travelled as much as l wanted and planned to, just near europe, so envious of people travelling the world, always a bit of an ecentric gypsy, and its all you hear when out where eveyones going been, but like you Bev travelling even short distances, and theyre getting shorter all the time, well it finishes me, went to cousins in belfast 2yr ago, half hour flight, l5min car journey, l,d to go and sleep for 2hrs, then went to cousins sons touring show, dreamboats, pop thing,50s,  fell asleep sat upright, unbelievable, thought l,d got away with it being dark in theatre, but l,d been seen, teased.  l also feel too old for me, body not in sinc with mind, it is annoying, even appearance on bad days, look in mirror to comb hair in morning, as little as poss after, though have flurries with face  creams or dieing my hair, new start etc,  then on bad days go out looking like l dont know what hoping l dont bump into anyone l know. Guess others worse off than me, and hope does spring eternal, L19. keep battling, your young and they could find a cure the speed medical science is progressing, maybe a transplant of an athletes immune energy genes,. l,m having osain bolts.

Live in hope and keep your dreams.  goodnight and good wishes to all. 

Thats excatly what it is!! Lol.

Ive nodded off a fair good amount, especially at the back of buses or if there is a wee heater vent under me. Has that wever happened to you?

I need to take naps during the winter to try and keep that at bay.

It defo puts on the years. Its upsetting at times to see people in my age group getting careers, starting families, exploring, travelling and living life. I just seem to be stuck in a rut and times are passing me by.

Im hoping a vitamin shot and the flu jab could be the start. Possibly enzym and protein enhances, a CNS stimulator

And a good well balanced lifestyle.

Until they find the route of the cause, anti depressant, painkillers and what other penny costing tablets they wanna throw at me doesnt cut it.

A dead cert with swimming. Its a goal. It would knock me for six now. I loved it as a kiddie and through my teens. I love taking a full bath and just letting the water take my weight, its eases the aches. Cant stay into long though or i cramp up.

What about yourself?

Yes, I now have to lay down on buses/trains. I try not to imagine what people think : ) I also am one of the unlucky slurring,mind fog,stumbling cfs types so, alot of the time presume people think I'm drunk.

Swimming was one of my enjoyments too and like you i plan to do again. Thing Is, you have to do so little when you start again with cfs. I had to do 10 mins and graduated to 25 with a break and its hard not to compare me now with me before (an hour was nothing then)

Hot baths yes! With candles is good. But, I don't get cramp just start to get restless and get out to lay down.

Its such a frustrating condition at times. I don't take any tablets as my mind gets even more foggy. Paracetamol is my only thing if it gets beyond reason. I do take b group vitamins and iron most days calcium and vit d less often. There seems alot of people with Cfs have low b12 and vit d?

Hope today is a good day.

B

Hi Lynne,

I traveled to London last Christmas by train. I'd planned the trip, break In London before traveling onto Brighton. It was unfortunately that day where it became a standstill on the trains. 8 hours it ended up being. I was Lucky, I had a seat and a good companion I met on route. But, when I got off I couldn't stop shaking. I felt so ill and didn't sleep well. The next day in Brighton was just awful. I slurred, stumbled, shivered and shook. My head was overloaded and I had o lay down when I got to my destination. It took me a month to recover and even then, I don't feel I got back to where I was! My New year was flattened with it too. This year, I'm not pleasing anyone else as last year It was to meet up with family. Its a hard balance to meet all our needs with this. I used to live near London and would easily travel up and down the country with no problems.

Hope today is a good day with you.

B

Yes. Same here. Either drunk or stoned.

I get bags round my eyes almost every day.

Ano what you mean, i used to do laps for a few hours now one or two and id be exhausted.

I get cramp mostly in my legs after. Its weird.

Yeah ive noticed that alot too.

Thats way i believe that the levels should be higher than average. Its like the body just drains them quick.

Today started with sleeping in. I woke about half 4 and tossed and turned for ages then a got my 8 staright and feel no to bad now.

My body always craves sleep. I can never get enough.

Hope your day is ok.

Hi, Woke up an hour or so after going to sleep, nagging pain, kept me awake 3-4hrs, then slept 2hrs early morning. Woke up battereed, feels like l,m drugged, under a blanket slipping in and out of sleep all morning, horrible. rallied in aft and pushed to do a bit of a tidying up sweep in garden, hard going but felt better it was done,  My destinations have got shorter, just local town mostly in last year, and smaller areas of it, then not the carefree pleasure it was, bit of an endurance, but better than stuck in.  l love the adventure of travelling anywhere, l used to go on train to peterborough to visit son in norfolk, what a train journey, near full from leaving london, worse if football match,s on with away fans,  , lve stood all the way from peterborough to leeds, sat amongst footie fans boozing and f....... stinking carriage out,  oh how l wish l could do it now, l wouldnt moan about standing even. l can fall asleep on bus,s and trains more so. Wondering if your Scots or irish L19, they say `wee` a lot, when l fell asleep in the theatre, a lst, my irish aunt said to me `d ye have  a wee sleep lynne`, lol busted. But on arrival earlier all of us  sat on patio hot day, l managed l5min and had to go to bed, felt that ill, sick, couldnt stand the heat,  another lst. l also get slurry speech at times, its just feeling too tired to have a conservation but making effort, l,m also reluctant with pain killers, fearful it will set nausea off again, so use gels and heat patches, helps a bit.  Also low on vit d, which seems common.  l think we can all relate to that stuck in a rut with time passing, in some ways its worse when your older due to  majority of time behind you, in other ways its bad when young when you expect to be healthy and active, l always feel sorry for people who get chronic debilitating or disabling conditions when young, unfair as life can be, only  posative is there is a good chance they will find more cures in next few years. lve just got out of the bath and dont feel as bad now  as the mornings.   lve very little family left now, so Christmas is not the same, l,d choose to go abroad in hotel, l just need a star trek cupboard to transport me there, traveling with changes and waits can be tiring for healthy people, for those not its an endurance and long hangover effect, l dont even enjoy a alcolic drink now, used to like  g and t, l,d be drunk with just one now, l can eat chocolate ok, toblerone addict, youve gotta have something, there,s been the odd occassion lve thought about a naughty cig, for pain but it would probably render me totally incapable, l,m grateful l can still keep myself home and pets going along, and tomorrow might be a better day, def will be for Ll9, weekend near. Hope its a good one for all, 

 

My day hasn't been too bad. My headache and neck/back pain have gone and was able to finish a power point presentation I had to deliver. I took on a short evening course that has taken alot out of me but, has also kept me entertained. I feel that I really achieved something today.

I'm sorry to hear you suffer so much from cramp. This condition is very Individual in some respects.

Am pretty sleepy now : ) hopefully we'll both sleep well tonight.

B

Hi Lynne,

Duvet days with cfs/me just aren't so relaxing are they? I''ve been good In resting today, did little and then rested apart from finishing a PowerPoint presentation for a short evening course I'm doing. I find I'm not so good doing things on my own and reading for pleasure is so hard at the moment. But, today has been better with my headache and pain subsiding. Some days can be such a mixed bag? Am glad you too have made small ttriumphs today and were able to get the energy to get through.

Here's to a good sleep tonight too.

B

hi Beverley,  Thanks, glad to hear you had a reasonable day and achieved something worthwhile, it is small triumphs, and small mercies of these days.  No wonder it affects the mind and thinking from day to day, very confusing at times, l thought these sort of times would be perfect for reading which l used do a lot and enjoy, cant find the concentratioin, or settled state of mind, odd thing being debilitated and yet restless at same time.  Who knows what tomorrows achievements might be, take care.