Life Expectancy and CFS/ME

[glenp]

I fixed the link

http://www.pnwlocalnews.com/south_king/ren/news/95815494.html

 

[Sing]

Thanks, Sallysblooms and ggingues for your responses to my post.

I do have a doctor who accepts the idea of ME/CFS and will prescribe some of the medication that helps with symptoms, as long as he views it as safe--not Klonopin which I would like to try, for example--but he is passive. Basically I have to be my own doctor, figuring things out and coming up with treatment ideas. I think a lot of us are in this position. Hopefully, with a valid test and more effective, accepted treatments on the horizon, this will change. Doctors are supposed to stay within the bounds of accepted practice, and our illness(es) are still mostly out of bounds and effective treatments undetermined. Most doctors now are confined to what I call cookbook medicine and can suffer consequences for going out of bounds. My doctor is sympathetic and can extend a bit--but that is all, for now.

As for breathing better, I have to work at this. Not yet at the stage I could use oxygen, but this could happen.

Thanks for caring,

Sing

 

[taniaaust1]

I am so sad today. Many years ago my mother nodded off for the last time, the fire got her. She never even knew she had this illness but I know she did.

After I nodded off at the wheel a few times the doctor gave me amphetamines. My mother didnt get that and neither did my friend Eddie Bauer, he was one uf us. I posted a comment but it never got posted. Here is a link to the newscast. How many of us die this way because of this illness and die after nodding off at wheel

http://www.pnwlocalnews.com/south_king/ren/news/95815494.html

When social security were forcing me to work when ill (they forced me to work 5 hrs per week under threat of having all payments to me cut off, while they spent 9mths sorting out my disability claim and rejecting it)... I too due to this had a car crash due to the CFS.. falling asleep while driving at times and completely unable to concentrate on the road. Really not fair.. i was made to work and then due to this illness ended up having to pay for 2 smashed up cars. They really had not a clue how exhausted i was. I still cringe at the thought, I could of been killed or killed another while being made to drive to and from work, while half asleep.

sorry to hear about your mother and friend.....
Ive heard about a 2 CFS people being hit by cars and killed while trying to cross busy roads, as they were unable to think and judge the car speeds and distance

 

[alphahusky]

I'd like to be alive to see my daughter and unborn daughter into their 20's. But if I have to stay sick like this the whole time, I don't know. The past two weeks have been brutal, and I've just wanted to give in. I'm hoping to die of the massive heart attacks that run in my family, they didn't even have time to utter a word. With my extremely high resting heart rate, and the fact that I've been at over 200 bpm a few times, I think that's probably it. I've had this almost 26 years, and a confirmed diagnosis of Interstitial Cystitis for almost 27- and that is hell in itself. If I had no kids, I doubt I'd be alive past this summer. But then again, I always rally when it comes to the depression part- but I have significant adrenal problems that have not been addressed that come up as panic attacks, and that is about the worst thing in the world, because for me, they are just continuous. I'm living for my daughters- if anything happened to them both, I would not make it a week. As I'm 42, part of me hopes I live longer than 55 to see my daughters to adulthood. Part of me hopes it's sooner. In the long run, the first one will probably win out, but right now, pregnant and all, I'm very moody.

 

[Sallysblooms]

I hope you can find a good doctor that researches and reads and knows about supplements. Supporting the immune system with supplements is so important. Maitake drops and many other things help. Also, other supplements. Safe, not prescriptions, but things your body lacks. Really good blood tests will test you what you need.

 

[glenp]

When social security were forcing me to work when ill (they forced me to work 5 hrs per week under threat of having all payments to me cut off, while they spent 9mths sorting out my disability claim and rejecting it)... I too due to this had a car crash due to the CFS.. falling asleep while driving at times and completely unable to concentrate on the road. Really not fair.. i was made to work and then due to this illness ended up having to pay for 2 smashed up cars. They really had not a clue how exhausted i was. I still cringe at the thought, I could of been killed or killed another while being made to drive to and from work, while half asleep.

sorry to hear about your mother and friend.....
Ive heard about a 2 CFS people being hit by cars and killed while trying to cross busy roads, as they were unable to think and judge the car speeds and distance

It concerns me of how many are dieing in fires and car accidents because of this illness

 

[ukxmrv]

I was a pedestrian and hit by a vehicle on a crossing. Too weak and slow to move out of the way. Badly injured and lucky to be alive.

Recently another car just about hit me on another pedestrian crossing. Was in my wheelchair but could only move slowly. The car sounded the horn and missed me but it was a terrible shock. Both times the motorist was speeding and just expected peds to be able to move out of their way.

Other PWME I know have died in car accidents and I know that I would be unsafe to drive so don't do it. Hopefully someone will look at accidents and include them if this is looked at properly.

 

[klutzo]

Alphahusky,
I hope you have had a Cardiac Event Monitor. If not, I would call your Primary doctor today and ask for a referral to a Cardiologist, or just go to one, if you have insurance that allows that. When they hear you have panic attacks in your sleep plus a heart rate that can go over 200 bpm, they should be thinking PSVTs.

I have PSVTs and they are like a preview of hell. I used to have them at least twice every night. A cardiac monitor worn 24 hrs. a day should pick them up on your first panic attack. This can be treated one of two ways, with a drug, which is preferred if you have dysautonomic symptoms with your attacks, or with a radio-frequency ablation, which will burn away the faulty electrical tissue and end the problem. The ablation will only stop the high and abnormal heart rhythm, not the dysautonomia, which is why CA channel blockers like Verapamil are used instead in dysautonomic patients. This has limited me more than any other symptom. I don't dare even walk around the block or go into a store. THe combination of Verapamil and L-tryptophan has ended the attacks for me, but I still have to be very careful not to over-exert, climb stairs, get too hot, too hungry, too late on taking my meds, too stressed, too overstimulated, etc. You may not have PSVTs, but with all the symptoms you are having, a cardiac event monitor seems overdue to me.

with empathy,

klutzo

 

[klutzo]

Sing,
I used to run a support group for ten years, and a call in line for 4 yrs. after that. Klonopin was by far the number one drug chosen as helpful by the people who came through my group. If you are having problems getting it prescribed, it may be due to the hysteria among doctors in the last few years about prescribing any controlled substances. If you ask around, people you know may be able to recommend a doctor who is not afraid to prescribe these drugs. I was fired by my primary doctor last year for refusing to repeat a test that had already been done by 7 other doctors, and it took me 5 tries to find a doctor who would give me my low dose of xanax, without which I could not walk due to muscle spasm. It was a recommendation from a friend that finally saved me. I have to go 8 miles to the doctor now, instead of 2, but my husband drives me anyway. I don't drive anymore, unless I am having an exceptional day, which happens 1-2 times a year, if I'm lucky.

The only problem I can see is if you have a reaction to quinine like I do. Klonopin made me stop breathing, and you certainly don't need that, since you already have breathing problems. However, I am the only person I know of who reacts to quinine derivatives that way, so I would not worry much.

I do think you need to see a cardiologist to be sure the breathing is not a serious problem, or a pulmonologist, if you have coughing or other lung symptoms. I've had breathing problems on and off for the past couple of years, and was told it is due to my Mitral Valve Prolapse, but I've had that for decades with no problems. The breathing problems developed at the same time as my swollen legs, so I feel it is the start of heart failure. It is too bad we have to push these doctors so hard before they will do anything except take our money.

klutzo

 

[*GG*]

Thanks, Sallysblooms and ggingues for your responses to my post.

I do have a doctor who accepts the idea of ME/CFS and will prescribe some of the medication that helps with symptoms, as long as he views it as safe--not Klonopin which I would like to try, for example--but he is passive. Basically I have to be my own doctor, figuring things out and coming up with treatment ideas. I think a lot of us are in this position. Hopefully, with a valid test and more effective, accepted treatments on the horizon, this will change. Doctors are supposed to stay within the bounds of accepted practice, and our illness(es) are still mostly out of bounds and effective treatments undetermined. Most doctors now are confined to what I call cookbook medicine and can suffer consequences for going out of bounds. My doctor is sympathetic and can extend a bit--but that is all, for now.

As for breathing better, I have to work at this. Not yet at the stage I could use oxygen, but this could happen.

Thanks for caring,

Sing

I use Oxygen when sleeping because I gave a copy of my sleep study to my Dr and he saw that my levels were to low while sleeping! Have not noticed any major improvements in the last week, but more brain damage cannot be a good thing! Our bodies need Oxygen to be healthy!!

 

[*GG*]

I am so sad today. Many years ago my mother nodded off for the last time, the fire got her. She never even knew she had this illness but I know she did.

After I nodded off at the wheel a few times the doctor gave me amphetamines. My mother didnt get that and neither did my friend Eddie Bauer, he was one uf us. I posted a comment but it never got posted. Here is a link to the newscast. How many of us die this way because of this illness and die after nodding off at wheel.

I have nodded off at the wheel a few times, typically on my way home from work which was at least a 1 hour commute. At the time I didn't care if I died in an accident, just seemed to be no hope!

 

[kat0465]

I'd like to be alive to see my daughter and unborn daughter into their 20's. But if I have to stay sick like this the whole time, I don't know. The past two weeks have been brutal, and I've just wanted to give in. I'm hoping to die of the massive heart attacks that run in my family, they didn't even have time to utter a word. With my extremely high resting heart rate, and the fact that I've been at over 200 bpm a few times, I think that's probably it. I've had this almost 26 years, and a confirmed diagnosis of Interstitial Cystitis for almost 27- and that is hell in itself. If I had no kids, I doubt I'd be alive past this summer. But then again, I always rally when it comes to the depression part- but I have significant adrenal problems that have not been addressed that come up as panic attacks, and that is about the worst thing in the world, because for me, they are just continuous. I'm living for my daughters- if anything happened to them both, I would not make it a week. As I'm 42, part of me hopes I live longer than 55 to see my daughters to adulthood. Part of me hopes it's sooner. In the long run, the first one will probably win out, but right now, pregnant and all, I'm very moody.

I can sure relate to the way you feel, although my children are 22 and 24, i was always worried i'd die and leave them motherless, honestly i think i hung in there because of them. And you will too!! it's a mother thing.
Now that i have reached that milestone, ( got em grown)i dont worry so much about them, but i know it would be a Huge Blow to my daughter who is extremely close to me.my son could care less.
i too know deep down it's gonnabe the heart that gets me, i just hope it's quick and painless.
i sure wish i would see a grandbaby or two befor tha happens, but as both of my kids are in no hurry to have babies, i may miss out on that Hang in there, your very Brave to have a baby and be ill, i got pregnant at 37 long after i was ill, and misscarried. i guess my body just couldn't do it.

 

[ixchelkali]

I am so sad today. Many years ago my mother nodded off for the last time, the fire got her. She never even knew she had this illness but I know she did.

After I nodded off at the wheel a few times the doctor gave me amphetamines. My mother didnt get that and neither did my friend Eddie Bauer, he was one uf us. I posted a comment but it never got posted. Here is a link to the newscast. How many of us die this way because of this illness and die after nodding off at wheel

http://www.pnwlocalnews.com/south_king/ren/news/95815494.html

GlenP, I'm sorry for your loss. Eddie sounds like a special person, and it must bring back especially sad memories for you.

 

[glenp]

ty

I will not let his death be in vain. Maybe some physicians will read this and have a patient that needs something to be able to remain alert, I saw my physician today and told him - i thanked him again

glen

 

[justinreilly]

It's hard to get the right figures on CFS deaths when it doesn't appear on the death cert. Rather like classifying each AIDS death due to the opportunistic infection or unknown cause.

Here's one example of a recent and tragic young CFS death. Note that although she had CFS, she was described as "fit and well".

http://www.hertsad.co.uk/news/death_of_quite_fit_and_well_harpenden_woman_a_mystery_1_443234

that's so messed up.

I have contacted the memorial list to ask them to contact the family to see if she had ME or just oxford "CFS". I told them that if they didn't have time to let me know and i would try to contact them. i think the family deserves to know that she may not have died of "SADS" and be remembered on the memorial list.

 

[ukxmrv]

Thanks Justin,

I wanted to contact them myself and ask if she had been forced on a graded exercise program or similar but didn't want to intrude on their grief.

Hopefully they won't be offended. ME can have a lot of stigma in the UK and families are not always predictable in their response.

 

[Sing]

I think it is good this thread was revived. I wonder if Phoenix Rising will go on and on, and eventually we will be able to note deaths caused or contributed to by ME/CFS? Of course someone would have to be in touch personally, outside the anonymity of the internet environment, to know if one of our members dies.

I am aware of close calls quite often, crossing the street, driving a car, cooking at the stove, nearly falling due to to hypotension--This hypotension is serious, not only because my bp can fall to blackout levels, but--for people who don't know--there is a loss of coordination, visual ability and thinking/common sense beforehand in which things just do not compute, and you can make a serious mistake!

Just in an ordinary day, after such things happen, I have to let go of my distress when the recognition hits me of the serious accident I just missed. I have to go on as if everything were normal, when I've just seen that the bottom nearly dropped out! This is so strange.

I wish there were a movie about this type of experience so more people would understand what it is like. This kind of life requires or develops an emotional fortitude---I see it all the time here in the forums.

 

[ukxmrv]

It does happen in long standing ME groups, Sing. I've lost count of the number of times an internet group I belong to has been contacted by relatives to say that someone has passed away.

 

[Nielk]

It does happen in long standing ME groups, Sing. I've lost count of the number of times an internet group I belong to has been contacted by relatives to say that someone has passed away.

Life is not everlasting. We all die one day. There are many accidents with healthy people. Just think about all the car accidents from DUIs or people talking on cell phones and texting. What about all the tragedies from the extremes of nature - just being in the wrong place at the wrong time.

What I'm trying to say is that there are no guaranties in life for anyone. I don't think it's constructive to dwell on this topic.
I mean or us the ones that are ill. As far as doing studies and proving how serious this sickness is - fine if it brings more awareness to the world.

 

[taniaaust1]

I wish we could set up our own study group.. of say 200-500 people with ME and have each of those include someone they know well around the same age and sex and is healthy for a control ... and monitor each year any deaths of these people to compare.

Of cause to do that one would have to include everyones personal contact details to check in once every 12 mths to find out if person was still alive or not. If anyone wanted to start out such a thing.. I dont mind being included for the sake of science.

If it was kept very public the results (but not individual contacts except to possible main group).. could this info be so it couldnt be denied? Could something like that end up being able to be published in a medical journal after say 10 years?? (or kept going longer if there hadnt been many deaths).

The way things are there is a good chance no good studies will be well known or even about on that in the next ten years unless people started one and made it well known it a study was being done. Could we all be doing something like that ourselves rather then waiting on good funding which never comes?