Does anyone have the same ME/CFS symptoms as me?

Luke

Member
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
 
Last edited:

Cort

Founder of Health Rising and Phoenix Rising
Staff member
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 malingers, well let's compare tax returns, my income for the year 2011-2012 was mid-six figures. I was not a malinger. 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
What a fall Luke - from mid-six figures to living in a darkened house! Just wondering - you had a more or less gradual onset or did it begin suddenly and then get worse.v

I can relate to the first two with the proviso that I'm much better off. Exercise - walking - causes a lot of muscle pain as well as fatigue. I don't have the light sensitivity thank goodness; instead I have chemical sensitivities - which have gotten better over time but are still problematic.

With that rapid onset muscle pain I wonder about the mitochondria. Did you read this blog? That rapid onset muscle pain reminds me of him.
How Walking to Bathroom Can Be Harder Than Running a Marathon: A Doctor’s ME/CFS Case Study


Are you getting the blog? We're going to announce a new program - Lives Interrupted - which focuses the before/after changes in careers cause by ME/CFS. It would be great to get your story on there.

Tough times Luke! Hang in there!
 

Hari

Active Member
Luke,

It is hard to live a life like you described. I was almost like you. But not the same extent as that of yours.

Few minutes of thinking after good sleep, I used feel weak. Then I would not even know what to do.

Having pains: I am not sure if my entire body had pains or PEM after physical activity. For sure part of them were pains (head ache). I used to experience pain even with light massage. Few muscles across body became hard (or stiff), and I used to have discomfort / pain in those parts a lot more compared to other parts of the body. In cold weather (below room temperature), I get pains and would not able to speak for more than few minutes.

Third - light and working with computers - after working for few minutes to hours, I used feel blur and would not able to concentrate.

Until 2005 / 2006 I used to visit mainstream doctors. Partly followed alternates. But no result, but day by day it was becoming worse.

After 2009, after I started organic diet, combined with expensive / premium protein powders, probiotics, transfer factor and certain nutritional juices I saw good progress. Due to financial crisis I could not be consistent in my treatment protocol. I started to recover slowly with lot of set backs and now I am able to work / move around comfortable at home more than 10 hours every day. I experience symptoms only after over exertion or sleepless nights.

Now I am experimenting with fasting I see even better progress. Will share complete story with setbacks once I complete my treatment through fasting.

I hope this give you hope and confidence that we have more than one treatment protocol to recover from our condition.
 

ScottTriGuy

Active Member
...

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.

...
Luke
You are absolutely right. I have been HIV+ for 17 years and was high level triathlete - now with ME I'm limited to walking, flat ground only, no hills.

I had (mild compared to you) light sensitivity when I was at my worst - I've been doing near daily laser therapy to my brain stem since, it took me from home bound to mobile. Lots of info if you're interested here: http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
You are absolutely right. I have been HIV+ for 17 years and was high level triathlete - now with ME I'm limited to walking, flat ground only, no hills.

I had (mild compared to you) light sensitivity when I was at my worst - I've been doing near daily laser therapy to my brain stem since, it took me from home bound to mobile. Lots of info if you're interested here: http://forums.phoenixrising.me/index.php?threads/led-red-intranasal-light-therapy.24195/
No kidding - HIV is very well controlled. That's amazing....

Doidge has a fascinating chapter on laser therapy in his latest book. Pretty stunning stuff. How expensive is it?
 

Merida

Well-Known Member
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
I have been trying to get well for 17 years - was completely bed-ridden for one year with all your symptoms and more. Prior to onset ( after a chiropractic adjustment on my neck/pelvis) for a sore, popping hip) I also had successful, happy careers - first in diagnostic microbiology, then science specialist teacher. My vision was also affected - including episodes of 'fractured screen' images. Even though my onset seemed to be from physical injury, my son had onset from a virus - lab-documented EBV/ age 5/ 1985. However, I have evidence he had a possible neck injury at birth. We both have scoliosis - mine is mild - not dx until I requested X-ray.

I led a large support group for 13 years, tried every therapy imagine able, attended conferences, read, etc. Learned a lot - ha! I think so, anyway. I keep coming back to the upper neck/ lower brain as the major problem area : spinal fluid/ blood flow/ rotated vertebrae and altered blood/brain barrier possibly related to scoliosis/ tight, restrictive dura. Vertebral artery syndrome is known to produce visual issues. The sacrum becomes important because it influences the tension on the whole nervous system and can cause the neck vertebrae to rotate - all related to how the dura is attached at C-1/C-2 and inside the sacrum.

Think this is an important clue: Do your symptoms get worse with neck extension? That is, how do you feel if someone gently stretches you neck - as in P T? ( NOT recommending this!!!!)

I returned to partial, though very limited life by spending over one year in warm pool at local hospital . 3 days a week/ never missed. At first I could only sit in the water and wave my arms a few times. Then I started walking back and forth - sideways, backwards etc. It took all the will I had. Three meds helped - all low doses - Wellbutrin, neurontin, oxycodone.

Please email if you want to talk more - but I haven't opened email for 3 weeks Struggling through Holidays. For your little ones: Love is enough until you get better. Never let go of " I am going to get better" thought. Blessings and hugs on this incredible journey we are on.
 

Merida

Well-Known Member
One more thought: my eyes were particularly impacted when my sphenoid ( a cranial bone - please read) was rotated. How can that happen? Again, the attachment of the dura-meningeal system - the dura ( word means "tough mother") can influence everything. Please read craniosacral literature. Do a search, " craniosacral sphenoid symptoms" Also, " John Upledger." I am sure these traditional osteopaths are correct in their understanding. However, a group of probably have structural issues that make 'correction,'challenging - but not impossible ?
 

Zapped

Well-Known Member
Much of my own experience parallels your narrative excepting being bed bound, and only in the last few years
having eye pain, daily, but not to the extent you described.

My path has been an ongoing decline over a 30-year period, with plateaus and even near remissions, only to
get slammed awith P.E.M. after over-exertion when feeling relatively stable. At present I'm on a plateau,
and can operate at about 70% pre-morbid - on a good day, and very careful to stop short of 'grinding'; limited
stressors and about 5% of once regular exercise. Otherwise, it's ~90% homeound and functioning at ~25%,
with lots of sofa time.

I vascilate as to the cause but my onset was both gradual and incidental. I also was on the high percentile
brass-ring treadmill and I tend to lean towards the school of stress related dynamics as the source, though
coincidentally I was in the 'Lake Tahoe' group - so I pay attention to the other side of the causation coin,
pathogens (sic, research, treatments, etc.).

As you may already have gleaned there is a vast amount of information to absorb in order to really
gain a deep perspective on this malaise. (Much is arbitrary and controversial - challenging to the
point of frustration.) Once you really absorb a certain volume I believe you gain the equanimity
to not only tolerate but to otherwise thrive with a handicap. It's damned hard and the ride is
turbocharged, often depressing, mostly lonely, stoic and solipsistic; other times enlightening.
Indeed, a roller coaster of emotions and uncertainty.

I can't say 'enjoy the ride', (for fear of being stoned,), but by all means grab a seat and join the rest of us to
see where the journey ends up... .
 
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Zapped

Well-Known Member
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.

Luke
As an afterthought, I'm curious if you have seen an opthamologist (or an ID) regarding an otherwise latent
CMV becoming active? If memory serves me (?) it's taxonomy falls under HIV-5 class and can fester in the eyes amongst other systems, which cause CFS-like symptoms.

A number of years back a highly regarded Harvard ID specialist went looking at my blood and found this very thing, but at that time he declined to treat it due to the rx availabiity. No one has mentioned it since and I know a few MD's did titers.

If the ID MD's found one now I think it could be bombarded from several angles... . 'Just a thought for some relief in case you missed it.
 

katvil

Member
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
I know where you're coming from, Luke. I recently had to move back in with my elderly mother who is healthier and more energetic than I am. I keep wishing for others like me where I live in the southwest who could live with me in a little place so we could help each other as I get no help and I bet very few of you do either. My sisters are still denying that I have anything. I cannot exist like this much longer, so I truly don't know what I'm going to do. I've been trying to get better since I got this and the last time I had a minor recovery was in 2008.
 

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