I would love to talk to anyone else who has ME/CFS and has ALL of the following symptoms too. (Even if you reply a year later to this thread i will get notified by email and contact you). I wrote my story below. But in a nutshell my three main symptoms are:
1. Fatigue (physically and mentally) which increases after exertion
2. Severe muscle pain (any physical activity or physical exertion makes it worse--even typing at a keyboard or sitting in a chair unsupported in the back and arms, the more activity the worse the muscle pain gets, if i ignore it and keep doing activity i am immobilized by severe pain by day end or it accumulates over a few days of the same activity to the point i am immobilized by the pain)
3. Severe light sensitivity, light causes pain (can't drive at night, garbage bag all the windows in my home to stop light coming in, can't use regular computer screens, tablets, etc or the pain in my eyes from the light becomes so severe, wear a hat all the time indoors and sometimes glasses... always have to wear a hat and glasses outdoors. I cannot watch TV or go to movies- at all - due to the pain these activities cause in my eyes). The light sensitivity symptom came on literally overnight. For the first year and half i was sick with severe ME/CFS i did not have this symptom at all, and watching TV was one of the only things i could do to kill time and as stimulation. Then literally one day i was watching TV and looking at my PC screen and the light caused my eyes to start aching badly. From then i have had this symptom. If i force through the pain of looking into a light source, like a TV, for a few hours during a day, my eyes become extremely sore and ache with pain--and then even the slightest light is absolutely unbearable. I have to rest them for a few days until they return to "normal". Car headlights at night time are so offensive to my eyes it feels like i am being shot in the eyes with bullets.
Looking to talk to people who have the same symptoms and the same or similar severity of symptoms?
Full story if you're curious:
I am male, 31 years old. I got ME/CFS, severely, almost 4 years ago in 2012. I also had symptoms of ME/CFS before that but was still able to work and function fairly normally (it was hard at times, but i did not realise how much harder it could - and would - get). My life has been virtually ruined by the severity of the ME/CFS since 2012. Since that time i have become housebound virtually all the time.
For people who say that we are malingerers, well let's compare tax returns, my income for the year 2011-2012 was mid-six figures. I was not a malingerer. I absolutely loved my life, my career, etc when i got sick. And if my symptoms went away tomorrow i would be straight back into living and loving life. (I abhor the Wesley theory that we are deconditioned and limited by thoughts, as if it is a choice to return to ours lives, as if we are not suffering debilitating physical symptoms of pain and fatigue. A theory that has stagnated research into real cures for this disease.)
Today, i live 99% housebound on a pension watching life from the sidelines. I just manage to live alone and with my symptoms and level of functionality i can just get by each day so long as the majority of each day is spent sitting or laying down.
Currently, I can make very short trips out of the house, every day or two, to do small things, but am limited to 10-15 minutes of walking (very slowly) in a supermarket, for example, because of how bad the muscle pain becomes in my legs/body if i am on my feet longer than that at a time, as does the fatigue. Spread out over a day i can not be on my feet longer than about 30-35 minutes or the pain becomes too severe in my legs by day end. This is the same if i use other muscles for too long during a day. So i am confined to sitting or laying down for most of the day saving my energy and muscles to do the small tasks i need to do to live and being careful not to do too much and wind up in bed.
It's hard to say I'm living. For the majority of the time I'm merely existing.
My young children visit me a few times a week for short intervals. And I spend virtually all the time with them in a chair watching them. I need help from family to have them overnights or on holidays, as i cannot manage long times with them like that on my own. Cooking three meals, showering them, dressing them, preparing them for bed, etc, is out of the question for me. If i want to have them overnights, i need help.
I also need to live in a dark environment due to extreme sensitivity to light. I set my house up so windows do not let in light by taping them with garbage bags etc. I can not use a regular back lit computer screens, tablets, phones, etc, due to the light sensitivity. (I have a special monitor now and without it i could not use a PC for any time at all).
I can't type much on a keyboard anymore (due to pain) but would really love to talk to people with the same symptoms as me.
It's insane how debilitating this disease is and how little respect it gets. Recently Charlie Sheen announced he has HIV. He lives a productive life with it. I'd much rather have HIV than ME/CFS. In my mind, in terms of functionality, there is no comparison between the two. ME/CFS is much worse. Yet, for some reason (many reasons could be pointed to like the PACE trials, etc) we live without respect or help for what we are going through.
This seems to be changing. I am hoping with the recent IOM report and NIH statements about this disease that massive research funding will happen and we will all, in the next 5-10 years, be able to return to living our once productive and normal lives. This hope keeps me going.
Luke
1. Fatigue (physically and mentally) which increases after exertion
2. Severe muscle pain (any physical activity or physical exertion makes it worse--even typing at a keyboard or sitting in a chair unsupported in the back and arms, the more activity the worse the muscle pain gets, if i ignore it and keep doing activity i am immobilized by severe pain by day end or it accumulates over a few days of the same activity to the point i am immobilized by the pain)
3. Severe light sensitivity, light causes pain (can't drive at night, garbage bag all the windows in my home to stop light coming in, can't use regular computer screens, tablets, etc or the pain in my eyes from the light becomes so severe, wear a hat all the time indoors and sometimes glasses... always have to wear a hat and glasses outdoors. I cannot watch TV or go to movies- at all - due to the pain these activities cause in my eyes). The light sensitivity symptom came on literally overnight. For the first year and half i was sick with severe ME/CFS i did not have this symptom at all, and watching TV was one of the only things i could do to kill time and as stimulation. Then literally one day i was watching TV and looking at my PC screen and the light caused my eyes to start aching badly. From then i have had this symptom. If i force through the pain of looking into a light source, like a TV, for a few hours during a day, my eyes become extremely sore and ache with pain--and then even the slightest light is absolutely unbearable. I have to rest them for a few days until they return to "normal". Car headlights at night time are so offensive to my eyes it feels like i am being shot in the eyes with bullets.
Looking to talk to people who have the same symptoms and the same or similar severity of symptoms?
Full story if you're curious:
I am male, 31 years old. I got ME/CFS, severely, almost 4 years ago in 2012. I also had symptoms of ME/CFS before that but was still able to work and function fairly normally (it was hard at times, but i did not realise how much harder it could - and would - get). My life has been virtually ruined by the severity of the ME/CFS since 2012. Since that time i have become housebound virtually all the time.
For people who say that we are malingerers, well let's compare tax returns, my income for the year 2011-2012 was mid-six figures. I was not a malingerer. I absolutely loved my life, my career, etc when i got sick. And if my symptoms went away tomorrow i would be straight back into living and loving life. (I abhor the Wesley theory that we are deconditioned and limited by thoughts, as if it is a choice to return to ours lives, as if we are not suffering debilitating physical symptoms of pain and fatigue. A theory that has stagnated research into real cures for this disease.)
Today, i live 99% housebound on a pension watching life from the sidelines. I just manage to live alone and with my symptoms and level of functionality i can just get by each day so long as the majority of each day is spent sitting or laying down.
Currently, I can make very short trips out of the house, every day or two, to do small things, but am limited to 10-15 minutes of walking (very slowly) in a supermarket, for example, because of how bad the muscle pain becomes in my legs/body if i am on my feet longer than that at a time, as does the fatigue. Spread out over a day i can not be on my feet longer than about 30-35 minutes or the pain becomes too severe in my legs by day end. This is the same if i use other muscles for too long during a day. So i am confined to sitting or laying down for most of the day saving my energy and muscles to do the small tasks i need to do to live and being careful not to do too much and wind up in bed.
It's hard to say I'm living. For the majority of the time I'm merely existing.
My young children visit me a few times a week for short intervals. And I spend virtually all the time with them in a chair watching them. I need help from family to have them overnights or on holidays, as i cannot manage long times with them like that on my own. Cooking three meals, showering them, dressing them, preparing them for bed, etc, is out of the question for me. If i want to have them overnights, i need help.
I also need to live in a dark environment due to extreme sensitivity to light. I set my house up so windows do not let in light by taping them with garbage bags etc. I can not use a regular back lit computer screens, tablets, phones, etc, due to the light sensitivity. (I have a special monitor now and without it i could not use a PC for any time at all).
I can't type much on a keyboard anymore (due to pain) but would really love to talk to people with the same symptoms as me.
It's insane how debilitating this disease is and how little respect it gets. Recently Charlie Sheen announced he has HIV. He lives a productive life with it. I'd much rather have HIV than ME/CFS. In my mind, in terms of functionality, there is no comparison between the two. ME/CFS is much worse. Yet, for some reason (many reasons could be pointed to like the PACE trials, etc) we live without respect or help for what we are going through.
This seems to be changing. I am hoping with the recent IOM report and NIH statements about this disease that massive research funding will happen and we will all, in the next 5-10 years, be able to return to living our once productive and normal lives. This hope keeps me going.
Luke
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![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
