Anyone else on here had ME or CFS?

Yep another with CFS after GF & Epstein Barr here. Missed all of 5th year & part of 6th year at school. Barely studied for my highers as I came home & went straight to bed after school.

I'd say I'm pretty much over it now but have never had the energy levels I had before, and can't cope with less than 8/9 hours sleep a night.

At the time GP's were useless and refused to come out to see me until Mum threatened to phone an ambulance. GP turned up & packed me off to infectious diseases ward! :eek:

They originally insisted CFS was stress. It wasn't till I passed out while trying to go for a hack that they paid attention. Mum found me in the back yard sitting against Tank pony's leg. Good Tank Pony :D
 
Blimey!

You guys have all really cheered me up! Have had Fm for 17 years now. Had to give up working with horses because of it. Got fat, the running around stopped but my love of food didn't!

I don't have to take anything and since being diagnosed have managed to get on pretty well.

I hate that I get tired because my brain is still on "go" mode. I hate that I have put on weight and can't go running or swimming or play tennis or cycle for hours on end the way I used to. The pain I just ignore and think of plesant things - I guess because to me the pain isn't "real" I work my way through with NLP.

The diagnosis took 3 years. Everyone thought I was mad, faking, etc then my lovely doctor came back from maternity leave and I told her all about it and she started on all the tests. Without her I would probably still be trying to do what I used to and colapsing left right and centre. Instead I am able to lead a sort of normal life and still do a little bit of the things I enjoy even if I am now 5 dress sizes bigger. :(

So sorry to hear others are struggling so badly with it.
 
[Big Hug, Paddydou] XXXX

Yes, I have ME diagnosed (got it when I was 19); plus I've several growths in my liver which affect my blood liver enzymes negatively. I generally feel tired, run down and constantly suffering from some cold or another. Makes horsey life hard sometimes but I battle on :)

Must admit, the becoming fat thing, upsets me a lot (hence my Avatar!) My weight's always yo yo'ed but is presently at an all time high. I absolutely hate it, but simply can't do anything until I have a "better" episode and can tackle it. But got to get my finger out and do something before next Spring - I've got my 16.2 youngster to back!! Motivation or what. LOL. :)
 
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The horses are great motivation just wish I could play with them over work!

What have people found to be the most successful treatments for them, what would u start with? I keep looking at reflexology, acupuncture, reiki etc but am loath to spend 30 to 40 on something I'm not sure about, on the other hand if it will help ill try anything!

I feel for those with weight issues because of it, I'm ok at the moment but spent a lot of my life with fluctuating weight due to the anaemia and meds like steroids to the extent people who hadn't seen me in a while wouldn't recognise me used to get me very down
 
From reading these posts, a lot of you seem to have developed the condition at an early age. I was early 40s when I was diagnosed and luckily, through not taking no for an answer, was diagnosed before 6 months and was having counselling a couple of months later. I feel very lucky for the speed I was able to get to grips with it all.

Pain, although always there in varying degrees, I can usually cope with and ignore, and I am definitely solar powered. :p I am also glad I am not the only one who truly feels the cold and damp. My weight fluctuates, but as I am tall, it is not usually too noticeable, just to me.

As for what works – it is obviously different for everyone. Not putting pressure on yourself or beating yourself up because you can’t do all you used to do, or not doing things at 100 miles an hour is hard. As a treat or times of stress I really enjoy going for a massage. I haven’t tried any alternatives like reiki etc, but then again I haven’t tried drugs as the ones offered were relaxants as to me it was more energy I needed, not less :rolleyes:
 
I was only offered drugs to help me get a peaceful sleep as opposed to the **** sleep normally associated with ME\CFS, did not get on with them though (see earlier post) I think the best way to tackle this illness is with humour and honesty, when your feeling **** allow yourself to feel it but when you are having a good day get on with things and enjoy it and dont apologise to people for not being able to do anything or doing something you enjoy rather that trying to please someone else. I went from living with my boyfriend, studying for equine massage exams and working with horses and enjoying my own horse to renting a room off a friend, sleeping a lot and not a lot else, i got a job working in a library (admin side, i am no where near serious enough to be customer facing:D) and building my hours up slowly, i took most of the pressure out of work by doing a temp job, was honest with my employers and told them i may not be up to doing 16 hrs a week (sitting on my arse!!!) and went from there, they were brilliant about me being flexible so if i could not work one day i went in the next. Mare went off to stud and the rest is history (this was after 3 years of trying to fight it and not knowing really what was going on with me) I had to do this on my own as my family (and ex)were **** (ahhh poor me!!!:D) and did not understand what was going on and made no effort to. They are still telling me it was all in my head, it is a subject we dont talk about!
 
As for the weight issues i never really did as i felt sick a lot of the time, i also used to walk as much as i could so when i was feeling ok i would borrow a friends dog and go and get some fresh air

Animals are great friends in times of need and i would always advise people to beg borrow or steal some quiet time with one (of any species) when at all possible:)
 
my mum has M.E. shes got it pretty badly. She was in a wheelchair for 2 years.

She keeps telling me its hereditary and that i will get it sooner or later. This is extremely upsetting and terrifying because i saw what she went through, and it can be a very debilitating illness.

My mum uses the "spoon theory" and if she overdoes it she pays for it with days in bed afterwards.

Re the depression thing - i dont think people who ave CFS/ME are 'just depressed' but really, i wount be surprised if depression factored in there somewhere as being CAUSED directly by having the illness, it is not the actual illness. i think if i had it i would be quite depressed, but i know this doesnt apply to everyone.

spoon theory link
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Interestingly, my mum also has been diagnosed with very early MS - lots of people think there is a link between the two it seems.
 
I've also put on a lot of weight since I've not been able to do anything. I've always been able to eat what I like and not put on weight at all, but then mucking out 10 horses and riding 3 or 4 a day burns up a lot of calories! Unfortunately I still have the big appetite but just sit on my backside all day :(

Apparently a lot of people are wrongly diagnosed with ME/CFS/Fibromyalgia when they actually have MS.

I don't have a diagnosis yet, first of all they thought I had Guillian Barre Syndrome but I didn't have enough protein in my lumbar puncture to confirm that.

I'm getting pretty fed up, yesterday was a very bad day for me. I had a small spot on my chin but when I woke up the whole side of my face was swollen, I had a fat lip and something roughly 3cm in diametre was oozing pus out of my face :( so painful I can barely eat, I can't speak properly either and the whole side of my face is now numb. I nearly fainted twice and just laid on the sofa all day.

Out of interest anyone else had this?
I think i will have to make another trip to the doctors again tomorrow!
 
I was diagnosed with ME about 5 months ago. I had to halve my hours at work, my job is still questionable. I had only got through 7 years of depression about 6months before symptoms for cfs began. It took me 7 months to get diagnosed (I'm one of the lucky ones!). They kept saying "you could be depressed" I pointed out to them that i knew exactly what depression felt like and it wasn't this! after seeing about 5 different Gps one finally asked me what I wanted to do and I said refer me to cfs cliniic (on avice from my friend who is an me sufferer).

Then about a month ago I was about ready to give up. i had too much time and nothing to do. I sat in bed all day, which although i knew didn't help my condition, I didn't have anything else to do. I eventually got to the point where I was asking myself if there was any point. My body wouldn't do what i wanted it to and it just felt like one thing after another. My husband had become my carer and I never felt so ashamed or helpless.

Then we bought Sammy. My little colt that just needed someone to love him! I crawled out of my hole and have been going strong ever since. I still get very tired and at the end of the day I am so glad to see my bed, but he gets me out of the house, I have physical and mental work to do with him. He adores me as much as I adore him (although that could be because I feed him) Today is my 10th shift that I have worked without having a day off! (Ionly work 3 a week). And all in all, although it is tiring, it is so worth every bit of energy. I can now enjoy time with my husband, get housework done, take the weight off of his shoulders and enjoy myself. i have new friends at the yard (so im not going stark raving bonkers talking to a hoprse 24/7) and I can't think of better motivation to recovery!
 
apparently i have ME..i am speaking to the doctor about it on monday..i also have hormone problems, massive fluid retention, chronic asthma, genetic arthiritus...and i am a wheelchair user..all at 17 :( oh what i would give to be 'normal'! :(

xxx
 
I definitely agree depression can easily come from it but its not the cause. I would get very quickly depressed sat at home day in day out so I really push myself. I don't have a spleen either so keep getting told to stay in and rest in case its a virus but only so much of that u cam do and if that's the case its a virus that's been hanging around longer than my spleen has gone!

I'm putting a blog together at the moment about the anaemia and cfs me, if any of you feel you would be happy saying anything on it that would be great. Pm me if interested, the idea is people can read and know they aren't going mad! Will add link later when on computer. But if u Google cfs-anaemia blogspot it may come up
 
digitalangel said:
My mum uses the "spoon theory" and if she overdoes it she pays for it with days in bed afterwards.

spoon theory link
http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/

Interestingly, my mum also has been diagnosed with very early MS - lots of people think there is a link between the two it seems.
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The spoon theory is the easiest way I've found of explaining M.E to someone who doesn't have it.

I have been investigated for MS on several occassions as I present with a lot of neurological symptoms alongside the more usual ones associated with M.E and I was told although I don't currently have MS it is likely that I could develop it in the future especially given that both my mother and my grandfather had MS.

I would be interested to hear what symptoms others have experienced as part of their M.E.
 
The blog if any one is interested, http://cfs-anaemia.blogspot.com/

I have a lot to add still but am planning to keep a record of my symptoms, how I am feeling and things I come across along the way.

I would love to include other people's expriences if any one is willing as I think it does really help others to read about other people's fights with it and experiences, It certainly has helped me in dealing with certain aspects!

My cousin has MS I do sometimes wonder if there is something odd in our family gene pool!
 
I am due to see a neurologist tomorrow. The 1st one I saw was a disaster just telling me that I was depressed and I had to take antidepressants. If I didn't take the antidepressants I wouldn't get better and to see him in 6 months.

In November 09 I had shingles and had almost 1 and half months off of work. I only went back to work as they were to cut my pay and just couldn't afford it. Since then I just haven't felt right at all. Even almost a year on I get pains in my hands, wrists and fingers, pains in my feet and lower legs. Then if I do any form of exercise the pains get worse and I suffer for days. I pretty much have a constant headache and always feel tired. I can not do anything to stop myself from falling asleep and I will just drop off literally seconds after sitting down. I have cut back so much on what I do. Before shingles I was in training for the london marathon, working a full time job and looking after my 4 horses pretty much by myself. Now I struggle to just work. I barely am able to see my horses and will ache after riding. Even if all I have done is go for a plod on the road for 20mins I get off and can't walk.

My main gripe is that no one is listening to me and just say the pains are due to me not exercising enough! :( Just don't know what to do from here.
 
This is intersting to read these posts as I was diagnosed with fibromyalgia just 3 months ago.

I have hypothyroid too and was putting some of the symptoms down to my thyroid but no amount of adjusting my dose altered the muscle pain, fatigue. The pain in my muscles felt like I had run a marathon every day with latic acid burn in my muscles and stiffness. I struggled just to get up stairs when I was having a flare. On my good days I just feel stiff and if you press a muscle it feels bruised although it isn't.

I used amitriptyline to help me sleep with the thyroid pains and once pains settled I stopped taking them, then would have a flare and after a few weeks would start taking them again. I hated the idea of taking something that was to treat depression all the time but it seems its what is keeping the flares of FM at the door.

I have gone to chronic pain physio to help manage my pain etc but if this is the best it will ever be I can cope with it. Its the flares I can't cope with and they wipe me out physically and mentally. I can't ride as my core strength goes, I feel like I will topple off. Also after a flare it takes quite a few months to build up my strength and core stability to the level it was.

I did wonder how I would manage to keep my horse when I had the flares but keeping him out over winter helped as I had a flare Sept 09 to Dec 09 the Feb 10 to Apr 10 and have been on amitriptyline since and been ok. Reading this and how you all manage with conditions that are worse is good reading and positive for me. Hadn't realised so many suffer with similar conditions. I keep quiet about it as I don't want people treating me differently or thinking I can't do things as I should.

Good luck to you all.:)
 
Good day to all you lazy depressed people!:D

Hope no-one is having too **** a day?

I found when i was riding i used to get really bad vertigo and if my girl decided that we were going to have a bit of fun i would shake like a leaf (from muscle fatigue not fear.... i think!!:) afterwards, just didnt seem to get enough oxygen going.

Also got very light sensitive and still now it is something that is not as good as when i was a wee young thing!

Oh yes and noise sensitive! (still cant stand the yank accent but dont think thats anything to do with ME)!!!:D
 
Good day from this lazy and depressed FM sufferer!!

I actually have good reason to be lazy and depressed..... broke my leg jumping 2 weeks ago so sat here on my lazy a*se doing nothing! lol! Cus I can't do anything! I had an operation to plate my leg so none weight bearing for a few weeks yet.

Anyone know if all this sitting around is going to make me have a FM flare up? :confused: I don't feel much different so far other than I am really weak on the crutches and stiff. I hope it doesn't bring on a full blown flare or I won't be able to even get about on the crutches. :(
 
CarmaandFlin said:
Good day from this lazy and depressed FM sufferer!!

I actually have good reason to be lazy and depressed..... broke my leg jumping 2 weeks ago so sat here on my lazy a*se doing nothing! lol! Cus I can't do anything! I had an operation to plate my leg so none weight bearing for a few weeks yet.

Anyone know if all this sitting around is going to make me have a FM flare up? :confused: I don't feel much different so far other than I am really weak on the crutches and stiff. I hope it doesn't bring on a full blown flare or I won't be able to even get about on the crutches. :(
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You have another leg, go for a hop, lazy moo!!:D


Hope you are not in too much pain, good vibes to you:)
 
Another depressed and lazy FM sufferer here too! Bit tired today as went out yesterday, so just sitting watching telly now. My daughter wants me to take her out again today but I just can't face it.
Got an appt to see the rheumatology dept at the hospital on 20th october!! Also seeing physio on tuesday.
Got to the point where I can't even stand up for 5 mins without my back and legs hurting me, I gave my daughter a bath last night and even just doing that caused me agony. I had to lay down and take some cocodamol and my amitriptyline.

Still can't sleep properly even tho my body feels very fatigued and wake up nearly every hour. Also get awful night sweats and wake up in the morning with soaking wet hair and sweaty all over. By the time I've showered and dressed I'm tired again!

Also I keep twitching, normally when I'm laying in bed trying to get to sleep my legs and arms will move on their own, my arms sometimes lift up off the bed! But today I'm doing it just sitting on the sofa :(

CarmaandFlin that sucks, I broke my leg and had to have it plated and was non weight bearing for about 12 weeks. In the end I got a wheelchair from the red cross as crutches do my head in!
 
Seahorse said:
Another depressed and lazy FM sufferer here too! Bit tired today as went out yesterday, so just sitting watching telly now. My daughter wants me to take her out again today but I just can't face it.
Got an appt to see the rheumatology dept at the hospital on 20th october!! Also seeing physio on tuesday.
Got to the point where I can't even stand up for 5 mins without my back and legs hurting me, I gave my daughter a bath last night and even just doing that caused me agony. I had to lay down and take some cocodamol and my amitriptyline.

Still can't sleep properly even tho my body feels very fatigued and wake up nearly every hour. Also get awful night sweats and wake up in the morning with soaking wet hair and sweaty all over. By the time I've showered and dressed I'm tired again!

Also I keep twitching, normally when I'm laying in bed trying to get to sleep my legs and arms will move on their own, my arms sometimes lift up off the bed! But today I'm doing it just sitting on the sofa :(

CarmaandFlin that sucks, I broke my leg and had to have it plated and was non weight bearing for about 12 weeks. In the end I got a wheelchair from the red cross as crutches do my head in!
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I loved the sweating part, sooo attractive i thought, are you also getting that nice light headed feeling, you know the one ... if i dont lie down im gonna fall down...?!!:)
 
(Hugs) your symptoms sound very similar to mine during a flare up. I too get spasms and an awful crawling sensation alongside the usual types of pain.

I don't sleep well and also get night sweats.

I'm ultra sensative to voice, light and smell and the worse my concentration gets the higher my intolerance gets. I also have real trouble focusing sometimes I cannot even see the Tv screen. :rolleyes:

I have absolutely zero control of my body temperature as well as IBS symptoms and a host of other things you haven't mentioned.

Over the last 14 years I've seen every type of specialist going as different ones help me manage different symptoms.

I hope that you get a definitive diagnosis and find a way to manage your symptoms.
 
thanks, been getting a horrible stabbing pain in my left arm today, and a horrible pins and needley type feeling in my legs from my waist down. It feels like goosebumps but I don't have any!

I've been like this probably for the whole of this year, getting worse in may when I was admitted to hospital.
Not worked since then and have put my horse out on loan, finding it really hard especially since it's the summer holidays and I have a very bored 7 yr old daughter that wants me to take her out every day!
 
I'm having a bad day! See I knew when I led Tigger to the school yesterday I really shouldn't but I am fed up so I pushed myself and boy am I feeling it! When done I nearly died and collapsed in my car, last night I was shattered and today my head is pounding, my ears hurt, my throat hurts. I made it to work this morning, I am working mornings at the moment, they just made redundancies so I really have to try and I can't afford not to but it was rough. I am now collapsed on the sofa and never moving again.

I had a week with my parents which was great. They cooked and washed etc, all I had to do was get up, dressed and amble about now and then, I saw some friends and felt shattered but I had nothing to save my energy for. Oh how different it is trying to work, see pone and do daily activities. I get home and am sat thinking of the list of jobs i need to do trying to work out how the hell I'm going to - cook dinner, wash up, wash my clothes, hang them up, put them away.

Oh well serves me right for lunging my pony and trying to enjoy life I guess :-)

I get the problem with the light and noise sometimes, my work involved listening to audio dictation at times and sometimes I want to cry listening to it go on and on

I just brought some watercolour paints to try to so something that doesn't involve interaction, noise etc. Not an artistic bone in my body but its theraputic!
 
Allover said:
You have another leg, go for a hop, lazy moo!!:D


Hope you are not in too much pain, good vibes to you:)
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Haha! That fair made me chuckle!! I know I'm a lazy bint allowing one broken leg to stop me doing anything! Its very tiring trawling the internet all day and reading horsey mags!

So sorry some of you fellow sufferers are currently having a tough time with symptoms. Interestingly I keep having hot flushes not realising that was a symptom.... I thought it could be my age and an early menopause (sp?)

Do hope you pick up soon. Have you tried increasing your amitrityline? I know it knocks you out the day after but could help you get into a sleep routine then drop it down to the minimum you can get away with. 10mg used to knock me out the day after but now I'm used to it I don't get any side effects the day after and it still helps me sleep.
 
This is an intersting post, wish I had seen it sooner. I have been extremely tired since about march. I struggle to stay awake, literally. Also been feeling generally run down and having bad headaches. Been to doctors and they took some bloods but said nothing was wrong with me, so just carry on taking pro plus. Need about 4 pro plus and nap a day to keep going. I don't know much about these conditions but is anything wrong with me?
 
What tests have u had? Obvious is thyroid, diabetes, iron levels, haemoglobulin levels, checks for viruses. If u are worried just keep going back to the docs. If u think u may have cfs look at the sleepydust website it has symptoms and other peoples stories see if any of it fits.
 
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