Unseen Illnesses

[Gabelma]

A lot of conditions are unseen, you feel lousy inside but everybody else thinks you look normal. Lupus, Fibromyalgia, ChronicFatigue, ME, even something like Irritable Bowel Syndrome can be very debilitating. Then there is depression. Frequently I get people wonder why I don't get off my backside and do more, reason is quite frankly because I can't. This website has a wonderful description of how my day functions http://www.butyoudontlooksick.com/navigati...SpoonTheory.pdf

Its been a rollercoaster ride for me. I was diagnosed in 1997 with Fibromyalgia at the time I was at university studying Archaeology more than anything I wanted to work as a Forensic Anthropolgist - and I had impressed the head of the department at a university enough that he wanted me to do the Phd there I was going to be able to do what I had wanted to do since I was 6. I was also working 2 jobs, walking about 7 miles a day and swimming 50 lengths 3 times a week. But I was just getting weaker and weaker, I found myself doing daft things like walking down the hill from work and sitting in a chapel for an hour before I could walk all the way back up the hill to home. 3 months after that I was lying in bed, couldn't deal with any light or sound, I was lucky that for a further few months after that I was able to read my scriptures before Thomas the Tank Engine became a chore. If I left the house it was after lots of painkillers and in a wheelchair (we didn't have a car at the time). I wasn't sucidal but if the Lord had taken me at that time I would have seen that as a blessing. During that time I learned that there were much worse things in life than death. I also put on 30lbs in 2 months.

I was sent many 'angels' during that time people who were in my life for a short time and helped me see scraps of light, over time what I call fibrofog just got worse and the spirit was blocked, I couldn't feel the Lord anymore, this was awful since I was very tiny Ihad just known he was by my side and to lose him so completely was awful I knew he was there. I couldn't go to church and I was in the care of a very anti Mum who would quite happilly make me drink alcohol etc I started to struggle with unclean thoughts and other issues I am not proud of, I was so sure I had messed up my patriachal blessing somehow and that was why I was like this. I had also reecived a blessing from my Home Teacher who it turned out was about as unrighteous as you can get at the time, and the blessing I was hanging onto that said I would get well if I achieved certain things in my life was false, and I have to say I wasted about 4 years of my life on it. My faith was very low, then one day I asked my next door neighbour for another blessing I remember it very clearly said that I was doing the very best with what the Lord had given me at that time - was such a huge boost to me, and told me that my illness would teach me more about the atonement and the gospel than the scriptures would ever contain, and that the Lord had moved the goal posts previously my relationship with him had been so easy for me, it was time for me to start working for it.

I have had an amazing journey and Heavenly Father is right my understanding of the Gospel has had to increase, because I couldn't study my scriptures the same, I now understand why people in Africa, and Mauri's in New Zealand have such amazing stories, if you can't read the scriptures then the revelation has to come straight from the Lord. Reminds of when Joseph Smith said that if you could glimpse into heaven for just 5 minutes you would learn more than a lifetime reading the Book of Mormon.

Over the years through blessings, scripture reading I have learned many things, because of my illness, main ones being out of the worst things, the very best comes, trials are just blessings in disguise and that the other religions can teach us a lot. I had to search out ways to connect with God better, and now have a full prayer routine, that has been inspired by Hindu, Muslim and Pagan friends. I have as a result of the meditations got more connected with the enviroment around me that just screams witness of our Heavenly Father. Ihave also learned some humility and learned to trust him to guide me the right way. I am not going to get well but I have had to learn how my body works and more about the Word of Wisdom and looking after myself. I have also learned I don't need to perfect as long as I am right with the Lord and myself that is all that matters.

And the atonement has really become more than an abstract concept to me - when I read about whilst my pain is nothing compared to what the Lord endured, its enough for me to be filled with some level of compassion and empathy.

I want to say I know that my illness is a great blessing in the lives of myself and my family, my children will have to grow up moreself sufficient, and I am very greatful to the Lord for the blessing he has given us.

Not sure what else to say but I know other people on these boards suffer as well and I felt it would be good to start a discussion.

-Charley

[Guest Yediyd]

A lot of conditions are unseen, you feel lousy inside but everybody else thinks you look normal. Lupus, Fibromyalgia, ChronicFatigue, ME, even something like Irritable Bowel Syndrome can be very debilitating. Then there is depression. Frequently I get people wonder why I don't get off my backside and do more, reason is quite frankly because I can't. This website has a wonderful description of how my day functions http://www.butyoudontlooksick.com/navigati...SpoonTheory.pdf

Its been a rollercoaster ride for me. I was diagnosed in 1997 with Fibromyalgia at the time I was at university studying Archaeology more than anything I wanted to work as a Forensic Anthropolgist - and I had impressed the head of the department at a university enough that he wanted me to do the Phd there I was going to be able to do what I had wanted to do since I was 6. I was also working 2 jobs, walking about 7 miles a day and swimming 50 lengths 3 times a week. But I was just getting weaker and weaker, I found myself doing daft things like walking down the hill from work and sitting in a chapel for an hour before I could walk all the way back up the hill to home. 3 months after that I was lying in bed, couldn't deal with any light or sound, I was lucky that for a further few months after that I was able to read my scriptures before Thomas the Tank Engine became a chore. If I left the house it was after lots of painkillers and in a wheelchair (we didn't have a car at the time). I wasn't sucidal but if the Lord had taken me at that time I would have seen that as a blessing. During that time I learned that there were much worse things in life than death. I also put on 30lbs in 2 months.

I was sent many 'angels' during that time people who were in my life for a short time and helped me see scraps of light, over time what I call fibrofog just got worse and the spirit was blocked, I couldn't feel the Lord anymore, this was awful since I was very tiny Ihad just known he was by my side and to lose him so completely was awful I knew he was there. I couldn't go to church and I was in the care of a very anti Mum who would quite happilly make me drink alcohol etc I started to struggle with unclean thoughts and other issues I am not proud of, I was so sure I had messed up my patriachal blessing somehow and that was why I was like this. I had also reecived a blessing from my Home Teacher who it turned out was about as unrighteous as you can get at the time, and the blessing I was hanging onto that said I would get well if I achieved certain things in my life was false, and I have to say I wasted about 4 years of my life on it. My faith was very low, then one day I asked my next door neighbour for another blessing I remember it very clearly said that I was doing the very best with what the Lord had given me at that time - was such a huge boost to me, and told me that my illness would teach me more about the atonement and the gospel than the scriptures would ever contain, and that the Lord had moved the goal posts previously my relationship with him had been so easy for me, it was time for me to start working for it.

I have had an amazing journey and Heavenly Father is right my understanding of the Gospel has had to increase, because I couldn't study my scriptures the same, I now understand why people in Africa, and Mauri's in New Zealand have such amazing stories, if you can't read the scriptures then the revelation has to come straight from the Lord. Reminds of when Joseph Smith said that if you could glimpse into heaven for just 5 minutes you would learn more than a lifetime reading the Book of Mormon.

Over the years through blessings, scripture reading I have learned many things, because of my illness, main ones being out of the worst things, the very best comes, trials are just blessings in disguise and that the other religions can teach us a lot. I had to search out ways to connect with God better, and now have a full prayer routine, that has been inspired by Hindu, Muslim and Pagan friends. I have as a result of the meditations got more connected with the enviroment around me that just screams witness of our Heavenly Father. Ihave also learned some humility and learned to trust him to guide me the right way. I am not going to get well but I have had to learn how my body works and more about the Word of Wisdom and looking after myself. I have also learned I don't need to perfect as long as I am right with the Lord and myself that is all that matters.

And the atonement has really become more than an abstract concept to me - when I read about whilst my pain is nothing compared to what the Lord endured, its enough for me to be filled with some level of compassion and empathy.

I want to say I know that my illness is a great blessing in the lives of myself and my family, my children will have to grow up moreself sufficient, and I am very greatful to the Lord for the blessing he has given us.

Not sure what else to say but I know other people on these boards suffer as well and I felt it would be good to start a discussion.

-Charley

What a beautiful and thought provoking post!!! I too, have been diagnosed with Fibromyalgia...and I struggle with not only the pain, but the attitude of friends and acquaintances who JUST don't get it!!! They cannot see the struggle I face every day...they wonder why I don't just find a job!!! The chronic fatigue that goes along with the fibro can be so debilitating!!! I struggle with depression because I am not as active as I used to be and as a consequence...I have gained weight. People who know nothing about this disorder just assume that I am lazy or that I eat too much, both are wrong assumptions, but I get harshly judged by people who claim to be my friends as well...even my Bishop, who I KNOW cares deeply for me, does not understand and continues to advise me to look for work and work towards self sufficiency...I am in SSDI right now, and not many people in my ward understand the concept of disability. (well, they do...but only if the disability is one that is obvious to the outside...hidden ones tend to be invalidated, that has been my experience)

Thanks for bringing this out in such an eloquent way, Charley!!!

BTW...I also agree WHOLE HEARTEDLY about how other religions can give insight and truth...I too...read and study up on other religions as well...I have been influenced by some of the things I have come across and have incorporated them into my belief system.

[pam]

May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

[Gabelma]

What a beautiful and thought provoking post!!! I too, have been diagnosed with Fibromyalgia...and I struggle with not only the pain, but the attitude of friends and acquaintances who JUST don't get it!!! They cannot see the struggle I face every day...they wonder why I don't just find a job!!! The chronic fatigue that goes along with the fibro can be so debilitating!!! I struggle with depression because I am not as active as I used to be and as a consequence...I have gained weight. People who know nothing about this disorder just assume that I am lazy or that I eat too much, both are wrong assumptions, but I get harshly judged by people who claim to be my friends as well...even my Bishop, who I KNOW cares deeply for me, does not understand and continues to advise me to look for work and work towards self sufficiency...I am in SSDI right now, and not many people in my ward understand the concept of disability. (well, they do...but only if the disability is one that is obvious to the outside...hidden ones tend to be invalidated, that has been my experience)

Thanks for bringing this out in such an eloquent way, Charley!!!

BTW...I also agree WHOLE HEARTEDLY about how other religions can give insight and truth...I too...read and study up on other religions as well...I have been influenced by some of the things I have come across and have incorporated them into my belief system.

i noticed yourself and several others had similar illnesses I thought it would be nice to talk about it as something positive, I have tried support groups and whilst Idon't mind whining about my illness, over the last few years I am just feeling like I have got past that stage and actually my illness has have given me a lot in my life I would not have had without it, yes it has taken my dreams but I would have been a very different person, personally I think such a large number of Latter Day Saints have the illness because it can give us glimpses and understandings of heaven

-Charley

May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

Ok I had the standard tests to check I wasn't dying or it wasn't something gixable. Then they checked for the pressure points about my body you are supposed to have at least 11 out of 18 for them to diagnose you.

I do think its really the diagnosis that Doctors give when they don't know what is wrong. In my own case there is a family history of the illness, my Auntie, my Gran and my Brother all have it plus a Great Great Aunt on my Dads side probably did

[sixpacktr]

I suffer from a couple of things, things which my family is aware of and not very many other people. My stomach, due to stress at an early age, has failed me, and I have been told that it is not a question of if but when I will get esophogeal cancer. I don't say that to garner pity or anything else, it is something that I have accepted and hope will be later than sooner. I am now in an area of the country where the pre-eminent leaders in medicine for my condition are at (I visited them 10 years or so ago, a couple of lives ago), and I wonder at times if the Lord didn't bring us here for that purpose. Time will tell, I guess.

I suffer debilitating attacks, that can happen at anytime or anyplace and I have absolutely no control over them. Just take lots of aspirin and hope to make my way thru it. Had it happen once during a talk a couple of years back. The pain was almost unbearable. Nobody was the wiser, I guess, except for my family who knew the signs instantly. I think their prayers prevented a catastrophe on the stand!

I have been blessed, thru my work, to travel the world. I have traveled well over half a million miles by air, but I always travel alone, because I don't want to have others know what is going on. I have passed up going camping with the scouts, on Father/son outings, etc., because I cannot sleep lying flat, and I never know when an attack will come. I have had some make slightly snide comments to me regarding this, but it doesn't really faze me. I had the opportunity for several years to live in the South, which I truly loved. And the church is very active in helping with hurricane relief efforts. Our ward went 2-3 times each summer for a weekend to help clean up, cut down trees, etc. I never once went, even though I wanted to. Instead, I would help at the Bishop's storehouse in preparing kits and the like because I can do that.

I share this because, although this isn't as debilitating as lupus, or fibromylasia, or even severe depression, it is real and it is something I have to take into account when I decide how and where I will serve. And I know the Lord accepts my offering. I shouldn't fast, and in fact have been told not to, but I do. It is something I feel I need more than I need the comfort (it tears me up, and my wife worries, but again, it is part of my offering to the Lord).

I guess where I'm going with this is that each of us can still serve, no matter how small we may think it is, no matter what others think, if we have a pure heart before the Lord. We can still find solace in knowing that this too shall pass, and that 'all things give us experience, and are for our good'.

I have had the opportunity to serve in leadership positions in the past, and will do so in the future. That is not a boast, but something the Lord has shared with me. I feel that this 'thorn in my side' as well as the 7.5 months of unemployment give me some empathy that perhaps others do not have because they haven't had to experience that. I know that some on the board feel that I am NOT empathetic, but little do they know. What I am is very zealous for the Lord and for his church and for his leaders, and I have a hard time with those that find fault with them. You see, I know what my heart was when I was in those types of positions, as well as those I served with, and we all wanted the same thing: to further the work of the Lord and to serve his children under our stewardship to the best of our ability.

So my advice to those that struggle with whatever is to do your best, work with your PH leaders, have faith to go forward, and then turn it over to the Lord.

[Alaskagain]

So my advice to those that struggle with whatever is to do your best, work with your PH leaders, have faith to go forward, and then turn it over to the Lord.

and -- don't be so quick to judge! Doesn't everyone suffer from something unseen that keeps them from being perfect in their word or action? The tolerance and patience we expect from others needs to be projected outward from us as well.

[This is a wonderful thread!]

[pushka]

Thanks for starting this thread Charley.

My 18 year old daughter has just had her 1st major depressive incident this weekend. She has been having trouble with PMS for 5 years, but recently her depression has continued beyond those times...On Friday she started to feel that she couldn't leave the house, and self conscious...after that she started to break down and cry, couldn't wash her hair, put on her makeup or help out around the house as she normally does...even listening to her favourite music didn't inspire her to dance as she usually does.

It has been extremely difficult watching her go thru this...I have had problems on and off since I was 17 with clinical depression...and have been on various types of anti depressants constantly since 1990.

As you say, Charley, it is one of the many 'invisible' illnesses...and one that can be extremely confusing and frustrating for the affected and their families. Hopefully my daughter will have a better chance of recovering from her depression than I did, as she has been in counselling too, on and off, for the last 5 years..

[pam]

What a beautiful and thought provoking post!!! I too, have been diagnosed with Fibromyalgia...and I struggle with not only the pain, but the attitude of friends and acquaintances who JUST don't get it!!! They cannot see the struggle I face every day...they wonder why I don't just find a job!!! The chronic fatigue that goes along with the fibro can be so debilitating!!! I struggle with depression because I am not as active as I used to be and as a consequence...I have gained weight. People who know nothing about this disorder just assume that I am lazy or that I eat too much, both are wrong assumptions, but I get harshly judged by people who claim to be my friends as well...even my Bishop, who I KNOW cares deeply for me, does not understand and continues to advise me to look for work and work towards self sufficiency...I am in SSDI right now, and not many people in my ward understand the concept of disability. (well, they do...but only if the disability is one that is obvious to the outside...hidden ones tend to be invalidated, that has been my experience)

Thanks for bringing this out in such an eloquent way, Charley!!!

BTW...I also agree WHOLE HEARTEDLY about how other religions can give insight and truth...I too...read and study up on other religions as well...I have been influenced by some of the things I have come across and have incorporated them into my belief system.

i noticed yourself and several others had similar illnesses I thought it would be nice to talk about it as something positive, I have tried support groups and whilst Idon't mind whining about my illness, over the last few years I am just feeling like I have got past that stage and actually my illness has have given me a lot in my life I would not have had without it, yes it has taken my dreams but I would have been a very different person, personally I think such a large number of Latter Day Saints have the illness because it can give us glimpses and understandings of heaven

-Charley

May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

Ok I had the standard tests to check I wasn't dying or it wasn't something gixable. Then they checked for the pressure points about my body you are supposed to have at least 11 out of 18 for them to diagnose you.

I do think its really the diagnosis that Doctors give when they don't know what is wrong. In my own case there is a family history of the illness, my Auntie, my Gran and my Brother all have it plus a Great Great Aunt on my Dads side probably did

Thanks. I knew about the pressure point tests. I didn't qualify due to that. Both doctors I visited said that many general practitioners are not that familiar with the condition. That is why it is overly diagnosed. But both specialist told me that many other things need to be ruled out before diagnosing as fibromyalgia. One of them being sleep apnea. Now THAT I have. Many of the symptoms of sleep apnea can "trigger" some of the fibromyalgia symptons. One I was tested and diagnosed with sleep apnea, started the treatment, so many of the other things that could be associated with fibromyalgia disappeared.

But many of the things you discussed I can also relate to the sleep apnea...so thanks for the posts.

[CrimsonKairos]

Several aphorisms I've learned through personal experience:

Sometimes the most handicapped people are those with no apparent handicaps.

Suffering teaches us what the Spirit can't.

The depths to which we sink determine the heights to which we can soar.

[Guest Yediyd]

Those are awesome, CK...thank you for those!!!!

May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

It was a very long process, Pam...I suffered for years before the doctor decided that it was Fibro. Maybe he just gave up and slapped me with the diagnoses...but it fits...Fibro...means: muscular, and myalgia...means: pain. So, fibromialgia just basically means: muscle pain. It is a generic term to mean just what it says, Muscle pain. I had the points test, too. I fit all the criteria for fibromyalgia...and nothing has been very successful at helping. I tried water therapy, pain killers, exorcise...I still do all those things, but I still suffer...I have just learned to live with it as best as I can...The pain is constant...but it has become like "white noise" Kind of, some days are worse than others...but mostly, I just ignore the pain. What else can I do?

[pam]

Those are awesome, CK...thank you for those!!!!

<div class='quotemain'> May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

It was a very long process, Pam...I suffered for years before the doctor decided that it was Fibro. Maybe he just gave up and slapped me with the diagnoses...but it fits...Fibro...means: muscular, and myalgia...means: pain. So, fibromialgia just basically means: muscle pain. It is a generic term to mean just what it says, Muscle pain. I had the points test, too. I fit all the criteria for fibromyalgia...and nothing has been very successful at helping. I tried water therapy, pain killers, exorcise...I still do all those things, but I still suffer...I have just learned to live with it as best as I can...The pain is constant...but it has become like "white noise" Kind of, some days are worse than others...but mostly, I just ignore the pain. What else can I do?

Even with the treatment for sleep apnea...I still feel much of that pain. There are nights I can't sleep I'm in so much pain and it all feels to come from muscles. I toss and turn trying to find a comfortable position and just can't. With the treatment for sleep apnea at least my chronic fatigue has tapered off. I don't feel like I have to sleep my weekend away any longer. But the pain still persists. But then again...maybe it's from being on my feet 10 hours or more a day sometimes 10 days straight. I am learning unfortunately to rely on Tylenol PM. I don't want to sound like a whiner. I am learning to deal with it and most times I keep this all to myself and endure it by myself.

That is probably why you can catch me online at times at 3 a.m.

[Guest Yediyd]

<div class='quotemain'>

Those are awesome, CK...thank you for those!!!!

<div class='quotemain'> May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

It was a very long process, Pam...I suffered for years before the doctor decided that it was Fibro. Maybe he just gave up and slapped me with the diagnoses...but it fits...Fibro...means: muscular, and myalgia...means: pain. So, fibromialgia just basically means: muscle pain. It is a generic term to mean just what it says, Muscle pain. I had the points test, too. I fit all the criteria for fibromyalgia...and nothing has been very successful at helping. I tried water therapy, pain killers, exorcise...I still do all those things, but I still suffer...I have just learned to live with it as best as I can...The pain is constant...but it has become like "white noise" Kind of, some days are worse than others...but mostly, I just ignore the pain. What else can I do?

Even with the treatment for sleep apnea...I still feel much of that pain. There are nights I can't sleep I'm in so much pain and it all feels to come from muscles. I toss and turn trying to find a comfortable position and just can't. With the treatment for sleep apnea at least my chronic fatigue has tapered off. I don't feel like I have to sleep my weekend away any longer. But the pain still persists. But then again...maybe it's from being on my feet 10 hours or more a day sometimes 10 days straight. I am learning unfortunately to rely on Tylenol PM. I don't want to sound like a whiner. I am learning to deal with it and most times I keep this all to myself and endure it by myself.

That is probably why you can catch me online at times at 3 a.m. ME TOO!!! My worst is nightime and getting in and out of cars!!!!

[pam]

<div class='quotemain'> <div class='quotemain'>

Those are awesome, CK...thank you for those!!!!

<div class='quotemain'> May I ask how you two were diagnosed? I have been to specialists and even discussed with them the possibility of having the same thing. Both doctors said it is the most overly diagnosed disease. Most doctors (after not able to find any other answers) will just say it's fibromyalgia. Plus don't misunderstand my reason for asking...I'm just curious how they came up with it for you? Supposedly there is only one test they can do to determine it is actually that.

It was a very long process, Pam...I suffered for years before the doctor decided that it was Fibro. Maybe he just gave up and slapped me with the diagnoses...but it fits...Fibro...means: muscular, and myalgia...means: pain. So, fibromialgia just basically means: muscle pain. It is a generic term to mean just what it says, Muscle pain. I had the points test, too. I fit all the criteria for fibromyalgia...and nothing has been very successful at helping. I tried water therapy, pain killers, exorcise...I still do all those things, but I still suffer...I have just learned to live with it as best as I can...The pain is constant...but it has become like "white noise" Kind of, some days are worse than others...but mostly, I just ignore the pain. What else can I do?

Even with the treatment for sleep apnea...I still feel much of that pain. There are nights I can't sleep I'm in so much pain and it all feels to come from muscles. I toss and turn trying to find a comfortable position and just can't. With the treatment for sleep apnea at least my chronic fatigue has tapered off. I don't feel like I have to sleep my weekend away any longer. But the pain still persists. But then again...maybe it's from being on my feet 10 hours or more a day sometimes 10 days straight. I am learning unfortunately to rely on Tylenol PM. I don't want to sound like a whiner. I am learning to deal with it and most times I keep this all to myself and endure it by myself.

That is probably why you can catch me online at times at 3 a.m. ME TOO!!! My worst is nightime and getting in and out of cars!!!!

haha I can TOTALLY relate to that one. Once I am done with work, I get into my car, I feel fine...but by the time I drive home it is all I can do to get out of the car. My kids have literally had to help me out of the car. Sometimes I feel like I'm 80 years old. No comment from Ben or Pale please.

[Guest Yediyd]

Precisely why I stopped dying my hair...it went grey prematurely...now I use it as an excuse for when I am in so much pain that I walk like an old lady...I hate it though...I am three years older than my best friend and when we go places together...people assume that I am her mother!!!

[pam]

I still have too much vanity for that.

[Guest Yediyd]

This pain has humbled me...maybe it is what I needed...

[bunnzy]

i love the spoon theory. I am making my husband and family read it.

I have a hard time with simple things like hygeine. So many of my spoons are used up on my baby, and there are none left for me!

[pam]

I'm a little lost. What is the spoon theory?

[Guest Yediyd]

I'm a little lost. What is the spoon theory?

Check out the link that Charley gave us...first post.

[pam]

Ahhhh now I understand. I'm sorry. I guess I missed that link at the beginning.

[Guest Yediyd]

Ahhhh now I understand. I'm sorry. I guess I missed that link at the beginning.

I use my spoons up on my kids...

[pam]

<div class='quotemain'> Ahhhh now I understand. I'm sorry. I guess I missed that link at the beginning.

I use my spoons up on my kids...

When I first read your response I thought you said "I use my spoons ON my kids." I was going to say now now now...

[Guest Yediyd]

My 13 year old son is 4 inches taller than me, and my 14 year old daughter has a shoe size that is four sizes bigger than mine!!!! I'm not planning on getting physical with either one of them!!! I still rely on good old fashioned fear tactics!!!!

...and of course, the occasional empty threat...

[Elphaba]

Not sure what else to say but I know other people on these boards suffer as well and I felt it would be good to start a discussion.

-Charley

Charley,

You and I have discussed this a few times as we both have severe fibromyalgia. You always are such an inspiration to me and I rarely say that. Yediyd has it also, and the two of you make me feel like a whiny little five-year-old.

Pam, you asked about diagnosis. It is called a "waste basket" disease. Far too many people are diagnosed with it who don't really have it. I was one of them 15 years ago. I realize now I didn't have it then. What I have today is far more debiliating. The fatigue is bone crushing. The pain put Charley in a wheel chair. I rarely leave my bed because when I stand up my blood pressure falls and I'm often on the verge of passing out. Yediyd is in constant pain, and every time I talk to her she's gritting her teeth trying to bare it. I take pain meds as I could not stand the pain, and I think that's okay.

When I was working I would be so sick and in so much pain I used to go lock myself in the bathroom and lie down on the floor and sob. One of the most debilitating symptoms, for me, was the cognitive impairment. I would sit at my computer and the "fibro fog" would roll in and I could not concentrate on anything. It would overwhelm me, and my eyes would hurt, I'd feel like I had the flu, and I would head back to the bathroom. When I would explain this fog to people they would often comment "Everyone forgets things as they get older." This was much more profound than forgetting things.

I've had people comment to me that I don't appear to have the cognitive impairment now. This is true. I finally was able to quit working and let my body rest. I no longer had to force it to do things it could not do. When I need to sleep, I sleep, which could be 24-48 hours at a time. Conversely, I'm often up 48 hours at time as well. I just let my body tell me what it needs, and consequently my cognitive impairment has improved greatly. But if I have to do anything particularly complicated, especially when my body is not feeling well, the fibro fog rolls still rolls in.

Anyway, I wanted to tell Charley how much I love your posts and the affinity I feel with you. You know that as we've discussed it before. Yediyd as well. I love you both with all my heart.

Elphaba

[Elphaba]

Hi Pam,

I just read through this thread again, and I'm sorry but I missed your posts about your Sleep Apnea.

If you're not getting good sleep you're going to have the symptoms of fibromyalgia. They've done numerous studies where healthy people are deprived of sleep. Within two weeks they have all the symptoms: pain, chronic fatigue, cognitive impairment, hypersensitivity to lights, noise and movement.

In fact, that's a major problem with fibro. People who have it never go into Stage 4 sleep, which is the stage where the body repairs itself. Over time, this has a cumulative effect.

My point is, your sleep apnea would cause your body to have the same symptoms of fibro, even if you don't have it.

Elphaba