aquarias.. i dont want to get you down but many of the people Ive spoken to who have CFS, have to change their lives some and live at a different pace to what they previously did. Some recover.. many dont. Some that recover easily, I wonder if they truely actually had CFS in the first place. Many will go into remission for a time or many years.
The less severely you are with this in its initial stages.. the more likely you will recover. I was completely bedridden for 9 mths initally so I was (am) quite a bad case.
At a slower pace.. yeah one can still enjoy a normal life, thou I must admit right now my life isnt all that good as the CFS has affected mine severely in every way possible eg I had to quit college after two years of it, so never could get my diploma, I cant work properly, Im struggling to work just 3 hrs a week, my relationships even suffer, I cant look after my family so my daughter had to go and live with her father.
Instead everyone has to pitch in and look after me at times, my brain fog is so bad that I struggle to do the simplest of things at times. Im fighting it hard thou, not willing to give in.. all which probably makes it all the worst for me.
My whole life has been destroyed by this illness and I should be on disability, Im fighting to not go on it but Im about to be forced too. Ive had to let go of all my dreams. please note that may life may become much better again if i go into remission once again from the CFS. Take your illness serious thou and avoid relapses or worsening of it at all costs, its so important to pace yourself and not make it worst and therefore give yourself a chance to heal some from this.
With CFS..exercising can often be a very very bad thing for a CFS patient to do, many dont recommend that at all. One is short of energy and tired anyway..and using their energy just to exercise.. often causes one to further crash. Exercise can often actually make someone with CFS much iller and further damage ones health.
The best thing I find for me (and for most with this illness).. is rest ...and lots of it. Its resting and avoiding stress... which allowed me to go into remission and stay in it for a long time.
I got my CFS from pushing myself too hard in the first place and the stress in my life at that time. I got it while at collage, tried to push myself throu exams but I just kept on getting like bad flu symptoms which came in more and more. Until I had to defer all my exams, I was never able to go back.
At the same time as trying to do collage full time, I was also being a sole parent of two young children, one who is disabled. Like most with CFS.. Im a personality type A kind of person, so was very highly motivated and pushing myself hard. There was so much I wanted to do.
I did have EBV (mono) 10 yrs earlier when I was 14 yrs old.. and also test positive for CMV (it been said by some that could be a cause of somes CFS) and also are positive for the toxo. parasite. So like most with CFS.. I have a lot of things laying dormant in my system but could reactive.
I'll cut and paste a list of my symptoms here seeing you asked. This is the list I take with me if I ever see a new doctor to give them some idea of CFS and the things I have to deal with.
My symptoms... of cause not all at once!!!!! thank god!
1/ post excertional fatigue (both physical and mental)
3/ exhaustion (physical and mental)
4/ feeling weak
5/ feeling feverish
6/ feeling fluish
7/ feeling like "death warmed up" (like feeling pale and like one is on deaths door)
8/ feeling faint and dizzy
10/ feeling overwhelmed at times (this happens when I get overload..eg too much
stimuli happening.. it can throw me into body shakes)
11/ feeling depressed (that was the first year of my illness)
12/ panic attacks (new symptom this year)
13/ rapid mood swings (new symptom this year)
14/ feeling suicidal (first year of illness.. and also this year)
15/ feeling cold (I sometimes need to wear a jacket or even gloves on warm days)
16/ feeling hot (I sometimes heat up doing the slightest thing..eg vaccuming one floor)
17/ Im intollerant to both heat and cold
eg ive collapsed twice at different jobs when it was hot so my bosses wouldnt
allow me to work with them in the heat anymore and just freeze up and go into
shivering very easy on a cold day
18/ intollence to light, it hurt my eyes (only back when I had the FM)
19/ intollerance to sound (hurts my head..and fast music can be too much in the speeds of its beats for my head and can send me into shaking)
20/ body sensation numbness ..
eg At the moment Ive got a numb right hand... I couldnt feel my friends hand
holding it well or him stroking it well today. Its a new symptom.
21/ feeling stiff (only in the past when I had the FM)
22/ muscle pain
23/ bone pain (only in the past when I had the FM)
24/ all over body pain (hurt laying on the bed cause of touching it.. with the FM)
25/ strange body sensations (like ants all crawling over me.. and also of like
spiders biting me..so much I'd yelp with it at times)
26/ pain inside my body which would change places and like pressure or pushing (only
with the FM)
27/ joint pain (back with the FM.but the muscle and bone pain was more of an issue)
28/ eye pain like behind my eyes (only with the FM)
29/ headaches (when ive over excerted myself)
30/ sore throat
31/ swelling of my toes of both feet and pain there (I couldnt wear shoes for two
weeks..doctor said I had chillbanes and gave me medication)
32/ swelling right hand (a recent problem.. no pain involved with it)
33/ weakness of my right hand (a new problem ..specific to that hand, affecting fine
motor skills eg its hard to dip a biscuit in a cup at times. I cant hold my
newborn neice on that side for even 5 mins at the moment)
34/ major spasming of right hand (a new problem.. spasms at rest)
35/ loosing control of right hand (a new problem.. it will suddenly let go of things and at
times I cant write with it anymore cause its hard to control, cant feel it well)
36/ Raynards syndrome in my fingers (when cold or I get stressed)
37/ Pins and needles feeling cause of poor circluation easily
38/ swollen glands
39/ blurry vision (only when I had the CFS/FM)
40/ severe memory problems (short time and long term) which are worsening eg I
forgot how to use a phonebox yesterday and then when i left there..i left my
money there!!!. I forget friends names at times and once forgot where I worked!!!!
Ive done the same thing with my car..thought I
it had been stolen when my car was right in front of me, i couldnt recognise
my own car.
41/ blank outs/mind lapses?? (bad new problem, I can be looking for something but not see it cause Ive had a blank out)
42/ confusion eg yesterday..freaked out thinking i'd lost my purse so was looking for it,
it was in my hand the whole time
43/ difficulty concentrating
44/ difficulty working out things which require mental effort eg adding up can be hard,
cant work out things in my head easily
45/ difficulty understanding language..
46/ difficulty talking ..I often say wrong words in sentences and at times find myself
able to speak properly.. eg forget how sentences start..or jumble the whole
47/ slurred speach
48/ rashes (I have a rash of some kind on my right arm at the moment)
(a doctor said it could be a viral kind of rash..but he didnt seem to know)
49/ shortness of breath (new symptom.. its like i cant get enough air, it can
happen on excertion)
50/ muscle weakness (my legs can buckle and give way if I stand in the one spot too
long. Standing in phone box talking to someone can be hard)
51/ muscle twitches
52/ poor appetite (i need to temp myself with foods to make myself eat)
53/ food intollences (a new symptom.. causing stomach pain, sore throat,
tiredness etc) Im now worried about what foods are going to cause me to react
and its putting me off of eatting at times.
54/ insomina (okay at the moment, had problems with that last at the start of this
year and in the past)
55/ balance problems (I loose balance easily and can just suddenly fall over)
56/ I cry easily at things
57/ easy bruising??? (I always seem to have bruises)
58/ easy marking on touch (a friend of mine noticed this with me a couple of weeks
back.. i was running my finger along my skin and it left a big red mark. My skin
dont seem to be doing that right now thou).
59/ thirst (ive stopped doing that several mths back when I got treated by a
homoeopath... i was drinking about 3 Litres on a normal day more when hot).
60/ sweating .. (bad night ones when I also had the FM) .. I still sometimes break out in sweat easily eg while vaccumming a room.
61/ body shaking/trembling (on over excertion
62/ tic (In the past couple of mths Ive developed a head tic ..major when it happens..
body overload can send me into it.. once a breeze blowing on my face sent
me into it. Its constant till the stimuli is removed)
In the past few mths with all this.. Ive been diagnosed with
1/hypercholestrolemia (high cholestrol)
2/ CARP (central auditory processing disorder).. (my ears hear something but my mind cant process what im hearing so its like i have hearing problems but its actually a brain problem)
3/PCOS (polycystic ovulation syndrome) the CFS is stuffing up all my hormones in my body.
Since i wrote that symptom list a mth ago.. I now have more symptoms as this illness is affecting my brain.
64/ My ability to taste is being affected.. eg I will be eatting a salad sandwich but will be tasting pineapple which isnt on it.
65/ My ability to smell is being affected now eg toilet smells can smell like something like strawberries.
(both of these strange symptoms ive been told can be in epileptic patients..but my recent brain scan (MRI) when I was hopitalised for a couple of days due to the CFS recently.. were negative).
66/ A couple of nights back.. i couldnt eat dinner as the smell of food even thou it smelt good and i wanted it.. it was making me gag and almost vomit.
67/ inability to tell the temperature at all. It can be very hot day..and i think its a cold day and lay in the sun with jumper.. Im completely unable to tell at times, doctor says Im at risk of getting heat stroke without realising Im overheating.
The other day I also felt so hot.. and it was a cold night. Fortuantly I took my temperature as I was about to wrap myself in cold towels to cool down.. it turned out my body temp. was already low.. my brain cant tell how warm or hot my body is anymore. ... brain damage of some kind is happening...
68/ ??? I may be now getting IBS (irritable bowel syndrome) symptoms. When the food was almost making me vomit.. I could feel abnormally strong peritalsis actions of my intestines.. cramping, my bowel motions have changed.