I’d like to have a share pal that I can share my experiences with and compare w/others as to what they are experiencing from CFS. I need more validation by listening to others about what they suffer through w/their CFS, how they cope with it, things they might do to help prevent a bout of fatigue. I’ve been suffering with it for almost four years now. Each bout seems to worsen. My bouts of CFS are almost daily ranging from moderate to severe. My bouts can be brought on by literally nothing (I wake up with it) or mental stress and/or physical stress brings it on.
I think i have passed the halway mark because i no longer wake up feeling very ill, my concentration has improved and if i do a little bit too much, the consequences are not so dire anymore.
Sometimes my vision gets a little blury but i don’t think its as much of a factor as it is for you. I know what you mean about being presentable out in public… the thought of having people to a sit down dinner, or going to one, is pretty scary for me, particularily if there are younger people there that i am expected to talk to/entertain. I find having a reasonable conversation with someone to be more exhausting than physical exercise for some reason… and having something interesting to talk about is so hard to come apon for us (me anyway).
Its really good that your friends and family get it, and trust you! Some of my friends simply don’t beleive CFS is real i guess, and make me feel like im letting them down or something when i can’t make it out (almost always… but improving).
When im around other people i try really hard to act normal so that they “won’t know” and talk to me more like im a normal person, unfortunately i usually end up wasting all of my energy on this and not enjoying their company!
I have only just started napping in the last 6 months and am finding it really helpful sometimes, what kind of a farm do you have?
We have 22.6 acres (9 buildable). We have only two horses, three cats and two dogs. One of the two horses was a rescue horse that’s Buck and he belongs to my husband. Ali is my show Arabian that I trained for the trail. We trail ride everywhere. Like I mentioned, I believe, my trail riding has been limited to 2-3 hours, anything after that I’m practically sleeping on my horse’s back. My CFS is very, very obvious. There is not even a way I can try to hide it from any one. Even two of my doctors have told me they’ve never seen anything like it. So that’s why I asked you and I need to talk to more people about more of their symptoms besides muscles fatigue, total listlessness and drop down tired. I completely understand it when you say entertaining and trying to prevent yourself from letting people see your CFS is stressful. My twin brother who died from AIDS 11 years ago now told me it was very stressful to him to make believe that he was doing and feeling well when he was so hurting inside and feeling so aweful. What state do you live in? And you don’t have to answer if you don’t want to, that’s perfectly fine w/me. Have you noticed thinning of your hair as well w/CFS, because I have.
It would be great to have you share your experiences here (on this board or in your journal)… i often put mine into my online journal here whenever something major is going on for me so you may want to check that out to see how CFS affects me.
Living with CFS isnt easy but I found it got a ton easier when I learnt to adjust my whole life around the CFS . (It affects our whole life anyway whether we want it to or not…so instead of it controlling me, giving me no choices with me in despair cause of it, I now make the choices before hand doing less). It wasnt until I did that, did I learn how to truly deal with the CFS.
To prevent the CFS bouts, you need to work out your triggers. There are some common triggers thou eg stress and trying to do too much with our conditions and hence not getting enough rest. These are things one can work on avoiding and hence triggering CFS flare ups.
I also find that eatting the wrong foods, (with the CFS Ive become intollerent to many things), can bring in CFS symptoms and make me end up going right back to bed.
“Each bout seems to worsen. My bouts of CFS are almost daily ranging from moderate to severe.”
nods… it can be like being on a runaway train. This is why working out your triggers if you can, is so important. Until you do if one keeps continuing in whatever is setting them off… the CFS can just get worst and worst. 25% of people with this illness end up as the “CFS severies” house or bed bound, many permanently, (that is until a cure for this is found), so I believe care does really need to be taken.
“My bouts can be brought on by literally nothing (I wake up with it)”.
From what ive observed with this illness is that there is always a reason, it is just many dont work out the reason for bouts. CFS can kick in up to 48 hrs after we’ve gone and done too much or had too much stress etc. So to work out the trigger… you may have to think back. Also many of the trigger factors can be hidden …a food you ate, hidden mold exposure you may of come across somewhere etc.
In a crash (out of control CFS) thou, once triggered one will keep on waking up with the symptoms till one has recovered from that crash. For some…that could be unfortunately years. I worry some whenever I go into a bad crash as I had a 9 mth bedridden crash in the past hence i do all i can to avoid crashes… and Ive found that they can be avoided!
“If I’m working in the yard whoa after that it’s all about going to bed, but at times I just can’t go to bed because I have two horses that have to be fed at certain times.”
It sounds like you may be doing too much for your conditon. If you need to go to bed… you probably should be doing so. You could actually be stopping yourself from recovering (and making yourself worst) by not listening to what your body needs.
Some end up changing their lives while others battle on just until they can do it no more. My 9 mth bedridden crash was from not listening to my body and pushing myself as there were things I told myself "I have to do". It was a hard lesson.
"With your fatigue do you find or did you ever find that your eyes were affected and you yawned a lot? W/me my eyes just weigh very heavily and I strain to keep them open and I yawn a lot. "
I yawn heaps… (actually just did right now). When my CFS is good I dont yawn all the time. There has been times when I couldnt even keep my eyes open so would fall asleep where ever I was.
I had an incident on new years eve. I had to go to bed as I was too tired to stay up and wait, so asked my family to wake me up just before the fireworks were about to go off. My neice actually had a lot of trouble waking me… she ended up managing to wake me consciously but I had sleep paralyses and then couldnt move at all or speak. She just kept screaming at me to wake up. (painful to me cause I was noise intollerent but couldnt tell her to stop). When I finally did manage to move and drag myself out of the bed, to my shock I found myself still in more of a sleep state than an awake state. The CFS had made me too tired to be woken up properly. I walked out to my family and was walking into walls on the way and sat down in a sleeping/dazed like state. They were trying to speak to me and I was trying to speak to them…but all I could do is make noises. It took me over 15 mins to wake up thou I was out of bed.
I had heard some CFSers say in the past that they had trouble waking up (with most its in the mornings), but till that happened to me, I truely didnt understand what that was like, one just truly cant wake up properly.
Its good that you have a great husband trying to help you
“My CFS is very, very obvious. There is not even a way I can try to hide it from any one. Even two of my doctors have told me they’ve never seen anything like it. So that’s why I asked you and I need to talk to more people about more of their symptoms besides muscles fatigue, total listlessness and drop down tired.”
I may have posted a list on here of the symptoms I get with it (I cant remember… CFS holey memory). If not I will do so so you can see just how many different symptoms can come in with this with me (I get 76 different symptoms).
I read somewhere recently that a study of CFS showed that 50-60% of CFS cases can be called “atypical CFS” as these cases have much more symptoms than just the commonly well known ones. (and during CFS studies, these so called atypical cases are usually left out of the studies, they only usually use those who have “standard”, (the ones who make the rules on what CFS is, standard, CFS). That says to me that the doctors are not reconising yet all affects of this and what is really common with it. How can most cases (50-60%) of this be atypical/uncommon CFS? Sounds to me that more things needed to be added into the info what CFS is truly like. A good list of what is really found in CFS is at http://wwcoco.com/cfids/bernesx.html Hair loss occurs in 20-35% of CFSers.
My hair not long back started falling out in actual clumps… but its stopped now. My friends were complaining that I was “molting” all over their houses, one friend of mine even complained that my hair had clogged up his drain after i left there. Fortunately I have thick and a lot of hair… so the hair loss on my own head wasnt too noticable.