How much of the fatigue is in our heads???

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Marlee2
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   Posted 12/19/2008 8:48 AM (GMT -7)   
How much of this is in our heads??? Yesterday my dear sweet adorable husband stayed home to help clean house, no girls he's not up for grabs. By 12:30 I felt like I could no longer move I was soooo tired but I had a list of things I needed to shop for, never fails I forget things. I drug myself to the shower and got ready to go out, not knowing where I was going to get the energy to walk through Walmart. However, when I got to Walmart and joked with the door greeter, I'm there so much I feel like I am friends with these people, I found I started feeling better. I only had a few things to get so it didn't take long. But by the time I left I was feeling pretty good and decided to stop at Goodys cause I had a coupon, buy $50.00 and get $10.00 off, and couldn't pass that up. A lot of you know shopping is like therapy for me. Since my Christmas shopping for everyone else was done decided to buy myself a few clothes, got a couple pairs of jeans and tops. By the time I got home Ken had finished the house, man's way, but it doesn't matter by the time all six little ones gets in here.
 
I've noticed this has happened before when I'm stressed over something, I feel drained, but if I remove myself from the stress for awhile and do something enjoyable it renews my energy. So for me anyway, I think stress drains my energy and it's more in my head than body. I was still tired when I got home but not that hit the wall can't move tired.
 
luv and hugs
Marlee
 

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getting by
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   Posted 12/19/2008 9:33 AM (GMT -7)   
I agree Marlee,

I think that stress really effects us in many ways. Plus once you get moving around, that helps give you more energy. You have heard, the more that you do, the more that you are able to do. But having a different atmosphere and being able to relax does help. But as you said, maybe it is in our heads. Stress depletes us of a lot of energy. Plus causes more pain.

I think this is a good topic, and gives us a lot to think about. I am sure that your shower and getting out of the house helped you a lot. You deserve to be able to shop till you drop. Excuse the expression. I know that you enjoy it. Now, I was stressed and sick until I got mine done. Doing it wasn't easy, though I had somebody there to show me the shopping ropes if you will. She knew where all the sales were and just where to go for what we were looking for. But I didn't really feel good until I got home and got the gifts wrapped, so I was dearly needing to get that done and off of my mind. Now I feel pretty good. Same old pain and fatigue, but still feel better.

Luv and hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


jewelrylady
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Date Joined Jun 2008
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   Posted 12/19/2008 9:48 AM (GMT -7)   

Marlee,  I know exactly what you mean.  I have often wondered if all my stressing about having to go out to shop or someother errand, isn't really making me more tired & fatigued.  Dr. Phil says you use as much energy stressing over something as you use to actually do it, so if you stress over cleaning the bathroom 6 times you have used that much energy.  (I read this back when I thought I must be lazy before being dx'd)  I guess it must be true.  I agree with Karen that your shower & just getting out probably helped alot.

I love to shop whether I can buy anything or not.  I used to say all the time I have shopped till I dropped.  Now I know what that really means.  LOL  I love thrift stores!!!  Yeah vintage!!!!

My husband, Mike, helps me clean the house too.  For a long time I took it wrong, thinking since I was not working I should be able to do it all by myself.  It was his way of saying he understood.  

Have a good day, hugs, Denise 


 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren.


RedDiane
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Date Joined Jun 2007
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   Posted 12/19/2008 9:55 AM (GMT -7)   
Marlee, I'm glad things worked out for you. You should shop more often. tongue But when I try to do more than my normal stuff, I start to shake all over and can barely stand up. I once tried to work out after going to the store and I had to quit after a couple of exercises, because I was shaking so much. I don't shake in other circumstances. Who knows? Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/19/2008 9:57 AM (GMT -7)   
A whole lot of it is in our heads, but it always has been. What is really different now then it has been our whole lives except diminished capacity in one form or another, or a whole bunch of forms. When we were young and healthy and we had to do things we didn't want to do, it made us feel tired, or anxious, or stressed or even feel sick. We spent our time either pushing ourselves through what we would just as soon not do, but usualy after we got into it, we still felt better, or we spent our time doing what we enjoyed and we felt good.

The basic principle of how to live life hasn't changed. What has changed is our capacity to do what we would just as soon not do, and to pursue what we would want to do. We don't automaticaly get a pick me up the instant we start thinking about doing something that used to be fun. It takes getting into it. And our ability to push through what seems like something we would just as soon not doesn't kick in as fast either.

Much of our time is spent locked in the box with the ailments, and fatigue and miserable feelings from that. Every time our minds can escape out of the box it's better for awhile. If we can't get ourselves out of the box at all, it gets a whole lot worse.

Believe me that if it was possible to just throw our boots, shopping shoes or whatever on and just go and do it and keep doing it, the ailment level would go way down. We would get better, not cured, but better. I have tried it a number of times and while I was pushing, I got better. The problem was that the ailments were greater then my ability to sustain it and I would have to eventualy give up and then I would get locked back in the box and everything got a whole lot worse.

The key is to do what you can long term sustain that is positive for you and in the long run, you get as good as you can get. And try to avoid as much as possible getting locked into the box with the problems.

finallypainfree
New Member


Date Joined Dec 2008
Total Posts : 10
   Posted 12/19/2008 10:12 AM (GMT -7)   
I didn't get the fatigue with the pain until 12 yrs. later. This is very bothersome since I have an OCD problem with cleaning! It took me yrs. to accept the fact that somedays I'm just not moving..

Grailhunter
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Date Joined Nov 2008
Total Posts : 159
   Posted 12/19/2008 12:27 PM (GMT -7)   
I am extremely obsessive my whole life about anything I do. Whatever it is, I overdo it. For these 13 years since this took me out I have swung back and forth between I can fix this, I can push through it and make myself normal again, to the depths of deepest depression where I no longer cared for months. Once I spent 8 months in my brothers bedroom playing a online Internet game 12 hours a day, and knocked out on Amitryptelene and Klonopin the other 12 hours. As long as my mind was focused on that game, there was no fatigue or pain. Then I ended up becoming agoraphobic and knew I had to force myself out of that bedroom or I was going to completely fall apart.

So I packed and went to my cousins house he had just inherited and it needed remodeling, and I am a Master Plumber and Journeyman Electrician and a preaty good carpenter and I spent a month straight, 12 hours a day completely exhausted and hurting everywhere and totaly remodeled his house. When the work was done and I couldn't keep my mind occupied any longer I fell into anxiety disorder again, went back on the Amitryptelene, plus now Paxil and the Klonopin and moved very sick back to my brothers.

There I decided that this time I was going back to work as a Plumber and I was going to stick with it no matter what. So whether I was completely wiped out, hurting all over or not, I essentialy worked 7 days a week, frequently until 2 am, telling myself I could do this even if I could barely move my feet on some days. Then I finally caved and had to give that up.

Then I spent the next 3 years at my daughters house living on stronger meds, and my life was preaty much going back and forth from the computer to the bed again. Then I finally forced myself out of the house and started walking to try to regain the lost physical capacity. First I could barely walk a quarter of a mile. After a few months I was doing all kinds of stretches and walking 4 miles twice a day and in more pain and stress then I thought was possible.

If you subtract the collapsed periods, this is the way I have lived my whole life. Obsessive, overachieving perfectionist that would push myself regardless of how I felt to get it done. If it was hard, push harder. Even when I started to originaly collapse, my response was that I needed to push harder. It attitude had always worked for me on everything else. I didn't realize until it was to late that I was not fighting something on the outside in this circumstance. I was trying to correct a problem inside of me that was caused by pushing to hard for many years, by pushing even harder.

The only reason I say this stuff is because I have to wonder something. What I wonder is what percentage of people with Fibro and CFS ran their lives in a very obsessive, overdo it, all out, physical or mental fashion long before debilitateing symptoms started showing up. And then when they did start having problems, pushed themselves even harder. I bet the percentage is really high that most fibromites, before the problem went over the cliff, were really hard core type A, perfectionist type people that would fight through anything that got in their way.

So, yes, to me, allot of it is in my head, because every single time I have forced myself to do what I used to before this hit me, physicaly I might have been a wreck, but mentaly, everything was okay. No depression, no sense of mental stress, no anxiety. But if your mental well being is dependent on being satisfied that your achieving like you used to be able to do, and physicaly you can't hold up, something has to give and adapt.

A Doctor friend of mine told me one time that the mind really has only two ways of viewing our situation. Its either alright, or its not alright. He said that pain is unavoidable. Everyone will get pain. Suffering however is a choice. I found this to be correct. For a period of time in this, a few months out of those 13 years I got my mind turned around where regardless of pain and fatigue, I was alright with it. I still had it, but I was not suffering.

mamanan
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Date Joined Jun 2008
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   Posted 12/19/2008 12:51 PM (GMT -7)   
You've really given us something to think about here, Marlee. I agree, I think part of the fatigue may be in our heads. I had some mild symptoms about 4 years ago. Fatigue, general achiness and pain in my hands. I was also becoming a little depressed I think. I would sit and look at things that needed to get done, and not feel like I had the energy to move. As my house got dirtier, I became depressed, and acquired more fatigue. One day I said that was enough, I was tired of living this way, and I knew that I had to break the cycle. As I moved, I got more energy, and I became happier with a cleaner home.

The same thing was happening last March. But once again, I found the more I moved, the better I got. I was in control of how I wanted to feel, whether to give in or not. Then my symptoms really kicked in and after a few months I knew what I was dealing with, fibro. A lot of days in the summer, I felt so drained of energy, but once i got to work, I felt much better. The adrenaline kicked in, I was forced to move, and it kept getting easier. I might be in pain the next day, or more fatigued, but once I had no choice, I would feel better, more energetic. This has often made me wonder if it was all in my head, especially at the beginning.

Now I'm typing this while trying to wake up from my second nap of the day. I need to get ready for work, but I honestly don't know if I'll be able to manage. I know I will, but it will surely be a struggle, and I'll probably go home early again.

I do have a point! I think that Grailhunter hit it bang on. You can fight through much, when you are healthy. As our bodies deteriorate, I think it gets harder and harder to push through that fatigue barrier. You might have gotten a good day, or since you were doing something you enjoy, it gave you a sense of enrergy and well-being. It's just so hard some days to get to that point, if we ever can even reach it.

I noticed today, I was walking around the house looking for something to do. I couldn't decide what to start on, or what to prioritize. So I gave up, gave in to my tiredness, and had a nap. I'm really hoping and praying that I can get back to functioning again after the holidays.

Enjoy you visit with all those grandkids, Marlee! I pray that you are healthy enough to enjoy your time with them. (((HUGS)))
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline


Marlee2
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Date Joined Aug 2007
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   Posted 12/19/2008 2:13 PM (GMT -7)   
WOW, Grailhunter you hit the nail on the head with me. I've been obsessive about everything my whole adult life. If it wasn't perfect it was never good enough. I feel like I always burned the candle at both ends and they finally met in the middle and I burned out. Now that I no longer have the energy to do everything perfectly and hurt so bad it's easier sometimes to do nothing. That's why when I get away from my obligations like yesterday I started feeling better. My house is a big source of stress for me especially when I'm having guest. I think I have come a long way with letting go of the perfectionism but maybe not as far as I thought. For heaven sakes this is my sons and their families coming for Christmas and five minutes after they get here this evening you won't be able to tell the house was ever cleaned. So what's it going to take for me to let go of all this silly pressure I put on myself, years on some Psych's couch??? I must say I am proud of the fact that I don't stop doing things that I know is going to stress me out like having holiday's here for my family even though it would be so much easier on me. So I am very thankful I have a family that I love so much that I won't let this DD stop me from enjoying.
 
We are having weather change after weather change right now so I don't know what is stress and what is weather causing so much pain today. Guess when the kids get here if I start feeling better I know it is the anticipation stress. smilewinkgrin
 
Thanks for all your input everyone.
 
luv and hugs
Marlee
 
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MT Lady
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Date Joined Jul 2008
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   Posted 12/19/2008 3:08 PM (GMT -7)   
'Course, this is just my opinion, but I wonder if it isn't endorphins that make us feel better when we are out shopping, or with our grandchildren, or other things? I have a 6-1/2 year old grandson who lives about 5 hours, by car, from us, so we don't see him all that often, but when I do, I really feel so much better and his visits are usually for a week at a time. I really believe it's the endorphins, you know, the chemicals in our brain, that make us feel better.
 
In any case, I am right there with the rest of you. Always have been an overachiever and now since FM, I feel as if I have become lazy. Even though I've had this diagnosis for ove 20 years, I still can't seem to get it through my head that it's not laziness.
 
Like you, Marlee, our weather has been awful, one storm after the other. Last night, we got close to a foot of snow, along with a thunder storm! Yes, you read that right! Tomorrow, temps are going down below zero, and then more snow on Sunday. But, I'm counting the days until next week, when my grandson will be here for a one week visit. I too am cleaning away, but it is so worth it!! I really do have to clean, because my grandson is allergic to cats and I have a cat. I know, it's impossible to get rid of all the allergens, but I do my best to keep him comfortable.
All the best to all of you,
Miriam
Hey Marlee, how is your little Krissy doing? I had one of my dogs at the vet today and saw two 12 week old Bichon/Shihtzu mix puppies...talk about ADORABLE!!!

Fibromyalgia, Osteoarthritis, scoliosis, microdiskectomy C5/C6, bulging disks L3/L4, compressed nerve L5/S1, disc compression L5/S1, IBS, hypothyroidism (now FINALLY well controlled) Also angioplasty, and angiogram, high bp, well controlled, high chol, now normal, well controlled

 


donnaeil
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Date Joined Jun 2006
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   Posted 12/19/2008 9:17 PM (GMT -7)   
Well, I pushed myself until I was able to swim for 2 hours per day. HOwever, I do not think the fatigue is in our heads.

What I believe is that once we are up and about, doing what we love and socializing, we are performing healing behaviors. If it was all in our heads we would not feel wiped out later on in the week. When I go to the pool I meet and make a lot of friends. Three years ago I was in bed most of the time and isolated. Forming a social group based upon exercise changed my way of living with fibro and chronic fatigue.

Marlee, you love to shop. what an excellent distraction from the day to day experiences you have with your condition. This is healing and you are impressive.

Okay, I am stepping down off of my soap bax,

Take care everyone,
Donnaeil

jewelrylady
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Date Joined Jun 2008
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   Posted 12/20/2008 12:13 AM (GMT -7)   
Yes, I did live my life in high gear all of the time.  Over booked & overworked & yet I still didn't say no to anyone.  I just added it to my list which became heavier & heavier.  I would then guilt myself into pushing more.  I would whine & complain but still continue on.  When did it go from just plain overworked & exhausted to Fibro Fatigue?  I really don't know, one day I just couldn't do it anymore.  I do know that at first I approached my illness with the same drive & determination I had always used, as we all know it is a downhill battle & not one I will ever beat with my old way of doing things.  I have heard it called "push & crash".  I think that is an apt name for it.  Hugs, Denise 

 I have:  Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren.


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/20/2008 3:52 PM (GMT -7)   
Push and Crash has got to be the best thing I have heard yet.

There was a time, before I gave up and sat in a Chair for almost 3 years, and reduced my stamina to exhausting on swimming a half dozen laps, that I would get out of bed at 5 am and go to the pool and swim a mile. This caused massive aches and pains, which I treated with a high tech massage chair, morning and evening jacuzzi sessions and a massage therapist working me over once a week. Now, despite the fact I could swim that mile in the morning and it helped, I was still exhausted by 10 to 12 and would take 3 hour naps. Get up for about 5 hours and crash out again by 8 or 9 pm, get my 8 hours of sleep and get up at 5 am again. After not swimming for a couple of weeks, I would feel sick and exhausted all the time.

Each week my massage therapist would ask me how I was feeling. Swimming caused more aches and pains, less sick and tired. Not swimming for awhile resulted in lots of sickish feelings and fewer aches and pains.

There came a point that the swimming would no longer control the feeling of being so sick and exhausted I felt like I could barely stand. I went to see a Doctor and he took a bunch of blood test and EKG and told me to come back in a week for the results.

While I was waiting for the results, I tried a new tactic. I would go swimming as usual, and then when the exhaustion would hit me at 10 am to 12 and I would usualy lay down for my 3 hour nap, I instead drove out to this small mountain just outside of town they used for cell phone towers, so it had a dirt road going up it. It was about a 800 foot climb and very steep. Steep enough that firefighters would use it for training for fire season. The average walker would meander up this mountain. I used it like a outdoor stair climber set on high. The first few times I climbed this mountain I had Soto stop a bunch of times going up and felt exhausted afterward, but still felt like I had really achieved something. After about 6 times I could power climb to the top and felt like I was on a mental high the rest of the day. By the time I went back to the Doctor for my test results I no longer felt sick and tired and I no longer needed those 3 hour naps. I had a good energy level all day and less aches and pains. The hiking the mountain seemed to be doing far more for me then the swimming, so I ended up dropping the swimming, since I didn't like getting up at 4 am anyhow for the open swim at 5am, started hiking the mountain every other day because it was impacting my knee and I was fine the rest of the summer.

Okay, since it seems like I am doing so well at this point, I have to tell what happened or there would be no reason for me to be in a Fibro Forum. The short version is the Nasdaq stock market collapased, costing me my retirement, at the same time my Internet business was falling apart, at the same time my Daughter that I was raising alone was moving out, at the same time my OCD mother was coming by everyday causing arguements when I was already stressed out to eventual overload. Then winter hit, I couldn't hike my mountain. I developed what was probably a mild case of winter bronchitis and between the stress and bronchitis was having a problem breathing, and being the totaly Obsessive person I am, decided that breathing and stress problems should be resolved by hiking the mountain in the winter when it was 9 degrees and gave myself cold air asthma on top of everything else.

So, what happened is a massive stress crash, losing my income, empty nest syndrome, selling the nest so I could support myself in the crash, and then 7 years of moving around to different relatives bedrooms that basicaly viewed me as having nothing wrong but laziness if I wasn't working, or lack of will power to stick with a job if I was working, and they either used me for their needs and when I fullfilled those needs wasn't welcome any longer, or if I couldn't make their lives better, treated me like a stray wet dog they let into their home and that my presence was like the dog peeing on the carpet. That is one side of my family, to help if it's in their benefit. The other side doesn't believe there is anything wrong at all except I am weak willed and even the most basic level of belief and moral support is more then I deserve.

The one and only exception to this is my daughter that I raised alone for 5 years of fighting this at all cost to myself, and 2 years of collapse where she gave me a place to stay and she has seen the effect on me close up. Her basic opinion is that I am one of the strongest willed people she has seen and is completely upset at the rest of my families attitude.

There actualy is a point and a moral to this story that ties these two stories together. When my home was secure and a place of rest and recovery and my daughter was there, and we are very close and our mutual presence is comforting to each other, and my income was secure in a level of work I could choose to do or ignor for days if need be, and all I had to concern myself with was working on my own health and doing those things that are healing, this is the best it got. During those times I was at my best, for periods of time having all of the pieces in place and working well enough that I felt almost well for days or even weeks at a time. I could even live without drugs and the natural therapies and excercise, and being able to really rest were enough.

That in my opinion is why this is nearly impossible to recover from. Every single negative is amplified. The more negatives that are involved, the less the positives will work. The less you will want to do them. If the rest of your life is not in control, you can't gain a greater sense of control by pushing and achieving. It will simply add even more stress. The fundamentals of life have to be in control for the healing things to really work

I had to have almost perfect circumstances and freedom to do what I needed to do. With a relaxed home, good income with work I could do on good days and ignor on bad days, being around people I liked being with, rest whenever needed to, push when it was a benefit to push, go visit people when I felt like it, I was able to get my body back to the point I could swim a mile in the morning hike a mountain in the afternoon and lose all sense of fatigue, most of the internal stress, much of the pain and the natural therapies controled the rest of that.

The Doctors can't find a cure because the bottom line is exactly what was already said about the burning the candle at both ends and it met in the middle. The cure is to start replacing the wax and the only thiing that can do that is having enough of the true healing things going in, building the wax back up faster then the negatives that burn the wax is taking it down.

Not that I really have room to talk. Its so bad at this point that I can just manage a 3 day a week job in a small retail store that has very little physical or mental demands on me. My physical stamina is so bad I feel worn out swimming 6 laps in a pool and then hurt for 3 days after I do it. I can't walk from one end of the shopping center to the other without feeling like I weigh 500 pounds. And I literaly function at this level on a load of medication to relax my body and mind as much as possible.

Why is this? Why, when I know the true healing therapies have the best effect am I not out doing them? It is because the rest of my life is so out of control at this point it would be like squirting a water pistol at a forest fire. There is a order of things for this to work as well as it will work for us. First comes the home, that it be as stress free and secure as possible. Then true resting in it and peace in our mind. Then comes how much overdoing it are we having to do to keep that situation happening. Then comes the rest of the outside stressers. Then comes the things that actualy promote healing, the freedom to do them, and actualy doing them. Pull all of these together by some miracle and you start to heal. The amount of time and how bad it is between push and crash will get better. But no matter how good we could pull all these things together will we ever become 100 percent again and be able to just do as we please or do as we did, that got us here. As a matter of fact, at the very best we would spend the rest of our lives trying to keep our balance and not go back to what got us here.

Now I will get off my soap box. Actualy, I am not as much on the soap box right now as under the box. I blew it once 13 years ago, actualy a lifetime that culminated in the original crash 13 years ago. Then I got a second chance to do it right and instead of securing my life so I could do what I needed to do in the best circumstances possible, I gained allot of ground, hung it all out there and blew it again. The first time was ignorance. I thought this is the way life should be lived. The second time was just plain stupidity. If I get a shot at straightening it out again and I blow it again, somebody just kick me and don't stop.

Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 12/21/2008 10:52 AM (GMT -7)   
Marlee, the fibro pain clinic people said that pleasurable activities can act as a pain blocker. So you just need to do more shopping!
Sue

Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 12/22/2008 10:07 AM (GMT -7)   
Grailhunter I agree with everything you said about your basic needs in life having to be secured before you can work on other things. But I don't think everyone worries about those things as much as others. You and I seem to be very much alike in that way. Right now my home is pretty secure, not worth what I paid for it I'm sure, but I'm better off than many. We took a big hit in the market that leaves life unsecure and scary for me. I guess we have to have all our ducks in a row to function normally. I have a large family where there always seems to be something stressful going on and I'm constantly saying "as soon as this is over I will have more time to concentrate on me" but then we go right into something else and there never seems to be a peaceful lull in my life. I know there are so many on this forum that have a lot worse problems than I do but they don't seem to react the same way as I do to them. I know some of my problems are inherited so can I change the basic person I am, I'm trying without much success.
 
Miriam, Krissy was in doggy heaven this weekend with so many kids to play with. She met her first larger dog and kinda got use to him. She is a handful right now but sooo sweet.
 
Sue, I used shopping last winter to get out and feel better. It would have been much cheaper to have joined a gym and walked. devil
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
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realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 12/22/2008 10:37 AM (GMT -7)   
I believe that the stress of doing things just brings on flare's... after all, stress is a reason for our flares!!!!  Basically it is a lose lose situation, we all know what happens when we over do things so we do our best not to do that, but then we are asked to anyways, or our lives demand that we do the things we really can't.  We have the stress of whats going to happen, plus the stress of others if we ask for help.  I know that our family and friends are sympathetic to some extent but if you are at all like me... they truely don't understand, and sometimes act like you are just making excuses!  That alone can make you stress.  Whether it is in our heads or not we are doomed to get the flare... I guess if we stress about it... the flare just comes sooner then later. Like I said... it is a lose lose situation!!! I don't know about you guys but I get SO tired of people making excuses for how I feel... they say I just need to do more, or I need to eat better, or what ever other crazy thing they come up with!!! I have done it all... some things may help prevent a "flare" but I DO still get flares, and pain whether I change my diet, exercise more, or just change my life style!!! Funny how they can tell me to change so many thing, yet get upset when I don't want to do something because I KNOW that it will bring on a flare.  I think that I do pretty good, I work full time, I make dinner every night, and I ONLY I clean my home and take care of my kids... if only they knew how much that takes out of me every day!!!!!  Sorry for rambling, just having a day!!!!  I guess its hard to hear any of US think that things are "in our heads" when so many others already do!  Trust me that crosses my mind too... but I just have to hold on to the fact that it ISN'T just in my head... or I will drive myself crazy!!!!


Wishing everyone a pain free day, ((((hugs))))
 
Rach
 
Partial thyoidectamy (hyperthyroidism), fibrocystic breast disease, low blood pressure, hypertension, depression, and anxiety, severe headaches, joint and muscle pain due to fibromyalgia.
 
Cymbalta, Tramadol (ultram), Propranolol, and Alprazolam (xanax)

Post Edited (realpain) : 12/22/2008 10:43:38 AM (GMT-7)


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/22/2008 11:08 AM (GMT -7)   
Your so right Marlee. This is all relative to how people view their circumstances. That is why somewhere I said the mind has two fundamental ways of viewing our circumstances. There are degree's of it, but it still comes down to those two ways are we are viewing ourselves as alright, or not alright. If we view ourselves as alright, we can have a huge amount of problems and our minds move positively. If we view ourselves as not alright, a simple headache, or even nothing at all will make us feel miserable and dwell on not being alright.

I am taking care of a 83 year old mother that has been extreme OCD her whole life and now has dementia and seems to be slipping into Alzheimers. She dwells almost constantly in the negative because she can no longer do most of the OCD things that distracted her.

My father lays in a Hospital bed all day except when he slides into his wheelchair and back. He fractured a hip when he was already barely able to walk, from bad knees, and his heart is so bad he cannot survive any operations that would require be put under, so now he probably won't walk again, and he already had a cumulative rating of 260 percent worth of disabilities before that happened. He is 10 times worse then I am, looking at the last years of his life as basicaly bedridden and has a whole lot better attitude then me. I know that if he could still walk at all, just enough to get from the wheelchair into the Van and back to the wheelchair, he would be grabbing his oxygen tank, his suctioning equipment for his trac, his heart pills and heading out everyday, fighting for air and eating nitro pills, and he is somehow spending most of his time in a frame of mind that its alright, and he is getting all the good out of life he can still get. Now that he is almost bedridden, he is still doing it. He fought his way into the wheelchair the other day and cleaned the kitchen and bathroom.

My sister has had Fibro allot longer then me. She is more progressed then me. She has bad neuropathies and her legs are shot to the point if she has to walk more then 50 yards the wheelchair has to come out. And she fights to dwell on the positives. She is in a constant cycle of push to get whatever done and get the positives out of her life, like baby sitting her grand daughter, and then crashing.

Me, I go back and forth from my little job I just handle to home and my TV, because I always feel either mentaly not there, or dizzy, or fatigue, or depressed, or lightheaded, or in allot of pain, or loaded up on stuff that kills the pain, killing my ability to think and focus, and I have a horrible attitude, because I know I am dwelling in all the negatives. My Doctor friend told me one time when I was complaining about my inability to focus anymore that I was wrong. He said he could tell that I had a strong ability to focus, but I was useing it to focus on everything that was wrong, instead of shifting it to the things that were good for me.

So before this turns into another huge meandering post, I will cut it off by saying the start of this thread by you on how much of this is in our minds is the main issue, not because its going to heal us, or is causing the problem directly, but its the thing we probably have the most control over. This is a physical problem, but it is just as much a mind problem, because it is a feedback loop, and your 100 percent right on in that it is individual on how each person views it and deals with it. Improving the mental sense of well being and focusing as much as possible on the good in our lives and doing what were capable of doing is not going to make this go away, but it will make the amount of time we spend feeling alright with where we are at more, and we will spend less time feeling we are not alright. Its the basic difference between pain and how much mental suffering.

This forum is filled with people in pain at different levels, and mental suffering at different levels. And although there is no way to prove it, I would bet there is a huge difference in perception that is not a direct relationship between the two. That doesn't mean we shouldn't be empathetic towards each other no matter what the degree of pain or mental suffering is. If anything, it has to be the other way around where we do understand its individual. Its one of the major reasons for a forum like this anyhow, right? Beyond trying to help each other with what we learned, its to give a sense of empathy and understanding that nobody that hasn't been there offer. Not sympathy, empathy.

Sorry for the edit and length, but I had to for realpain. I absolutely do not think this is just in our heads. As a matter of fact, fix the body and nervous system somehow, so we could pursue our lives and the mental issues would probably disappear. I got ping ponged for two years between a Doctor telling me if I had a good Psychiatrist I would get well, and a Psychiatrist telling me if I had a good Doctor I would get well. I enjoyed telling them both what the other one was saying, and neither one of them knew what they were talking about.

But, Fibro is still a psychosomatic problem, which is a whole lot different then a hypochondriac problem. Psychosomatic means there is a conscious connection between your mind, your sympathetic nervous system and a very real physical problem that is feeding in a big loop. It became a psychosomatic problem when the symptoms crossed over the line and made you consciously aware that it was stopping you from doing what you wanted to normaly do without suffering and messing up your ability to live your life. At that point it caused a conscious stress feedback to the physical problem. You cannot fix the physical side of a psychosomatic problem by simply fixing the mind, I don't care if you eat rice and vegetables and sit on a rock and meditate or excercise and then relax 24 hours a day. Did it, done it, been there. But you can improve it, if your life allows you. The more control you gain in any of the aspects of this the better off you are.

I know what you mean though about relatives and friends attempting to show understanding and how little they actualy understand. Unless your actualy passing out in front of them and your still standing, the room could be spinning around your head, your hurting everywhere, you just want to lay down and pass out, but because you are still standing and still forcing yourself to do whatever they need, there just can't be that much wrong with you.

Whats really strange is my sister has Fibro and she got treated the exact same way by her husband and everyone else but me for years, until it reduced her to not being able to stand much of the time, and then finally people started clueing in. I just got to the point I don't even bother saying anything, because its like you said. "Well, if you would just eat better, or go back work as a Plumber, or start your own repair business, or start doing your Internet business again, or start swimming a mile a day agaig, or hiking, or whatever you will be fine. Just pull those boot straps up and make everything work for yourself and all will be fine.

We basicaly know our own limits, and what we need that would help us and what takes us down, and if they would hear us, and wanted to help on that basis, it would help, but it just can't be accepted at what is coming out of our mouths, so it just adds more frustration, stress and pain. I know that in most cases they are just trying to be helpful, and in some cases its just out right judgementalism. And I know this is not all the cases with everyone. Some people have others in their lives that are truly supporting, but its preaty rare. But the thing that kills me in most cases, is it just has to be something other then what I am simply saying as being the truth, so I preaty much gave up saying.

Sorry, it turned into a long meandering post after all.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Near Constant Dyspnea. Disequilibrium, prolonged standing, walking, progresses late in day.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Glucosomine, Condrotin, MSM.

Post Edited (Grailhunter) : 12/22/2008 4:53:36 PM (GMT-7)


realpain
Regular Member


Date Joined Nov 2008
Total Posts : 83
   Posted 12/23/2008 7:23 AM (GMT -7)   
Grailhunter,
 
You worded things so wonderfully!!!!  I know that things are "in our heads" at times, but I also believe that a lot of the time is is due to the fact that SO many of us have had to deal with so much negativity in our lives due to this disorder.  It took me 8 years to be diagnost because every doctor that I went to either blamed the pain on my thyroid problems, stress, or straight up told me it was all in my head!!!!  I realize that this disorder is very difficult to diagnose and very complicated to understand, even by us!!!  I know that certain things help improve my living, but it never takes it away!!!  Yes... worrying about things and stressing about the fact that we have to do things can bring on more problems, which in turn is in our own minds.  If we learn to deal with the fact that life does not stop for us, then we are more apt to deal with things better.  By living with this for 8 years without knowing what it was, I learned to just except it... and do what I can, and HAVE to do, and thats all I can do!!!!  I dont sit and stress about it necessarily, because there is no point... but I do have to admit that there are times that I DO talk myself out of cleaning and things, because I am just down in the dumps, and then when I look around and see my dirty home it just stresses me out!!! So... yes if I would just get up and do it, I would feel better in the end. 
 
This is a good subject for all of us I think...  
Wishing everyone a pain free day, ((((hugs))))
 
Rach
 
Partial thyoidectamy (hyperthyroidism), fibrocystic breast disease, low blood pressure, hypertension, depression, and anxiety, severe headaches, joint and muscle pain due to fibromyalgia.
 
Cymbalta, Tramadol (ultram), Propranolol, and Alprazolam (xanax)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/23/2008 11:16 AM (GMT -7)   
I had an aunt and uncle that were the two most positive people I had in my life up to the moment of their deaths. Now their daughter, my cousin, has terminal cancer, she will be 57 in Feb. When I talk to Teri she doesn't dwell on her sickness, I had to find out from another family member that she is on her last series of chemo, after she is done there is nothing else they can do for her. I think as long as she is receiving the chemo it is easy for her to be in denial and she has hope that they will slow it down and give her more time. That's all she has been doing is buying more time, she was terminal from the beginning.
 
I am trying very hard to pattern my way of thinking about life and death from these three people whom I love and admire very much. However, I'm having to learn what seems to come natural for them. It's not that I'm an unhappy person cause I'm not, I have a great life. But I did inherit anxiety and depression and they didn't. So when you lacking in certain chemicals in your brain you have to take meds to try to achieve what comes naturally to others. I have been telling my doctors I need a med change in anti-depressants cause I know me better than anyone. That is the first thing on the agenda after the holidays.
 
You see from your parents Grailhunter how differently their brains are wired and what a difference it makes in their attitudes. I have the same thing with my three sons, two of them let everything roll off their backs and one that inherited the anxiety and depression gene. He use to ask me why he couldn't be like his brothers. I guess that was my whole point in the beginning of this thread that many with fibro also have anxiety and depression problems or suffer from PTSD. For me I have to find ways to remove myself from the stress in order to come back and be able to function. I guess it is coping skills and so many of us have to learn them.
 
I guess I find the whole mental thing fascinating cause I have always been so interested in how our brains work. I started out being a psychology major but didn't get my degree. The brain is the one organ we have in our bodies that function differently for everyone.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Grailhunter
Regular Member


Date Joined Nov 2008
Total Posts : 159
   Posted 12/23/2008 2:06 PM (GMT -7)   
Genetics is a big factor. My father I am refering to is actualy my step father, but he has been there for much of my life and he is Dad . His whole family of his generation, and his mother that is still going at 92 are all in very bad health, and they all somehow seem to ignor it and are still out doing stuff like going shopping, or out to dinners, or visiting each other and having meals together, and it doesn't make any difference whether they are still just walking, or it takes a walker, wheelchair or whatever to do it. I am basicaly running a rest home out of a apartment, and in the spring my step fathers family is planning on moving my step father and mother up to where his family is. This can only be accomplished with a Motorhome, or a disability transport van that can load a wheelchair with him in it. And I can just see this happening. A half a dozen inlaws are going to show up, barely able to get around themselves, and get my parents up where they are and settled into a apartment care facility.

Continueing on with the genetic aspect. On my mothers side everyone has anxiety disorder. I was raised by my father alone, while my mother raised my brother and sisters. To long to explain how that happened and irrelevent anyhow. But my father was a raging alchoholic. This man was the most feared person in our town. He held down a job his whole life, but when he was not working, he was closing the bar and after he closed the bar, would come home and use me as the target for his rage. I never realized as a child he was self medicating something. So I had OCD and anxiety syndrome off my mothers side, and probably depression off my fathers side. Add in that I was raised alone by him from 5 to 15 years old and this was a very scarey man that had me living in stress and fear through my whole child hood, and the net result is he cranked up my base stress level where what I thought was normal was actualy always heightened stress, even when I was otherwise young and healthy. I actualy had a peptic ulcer at 8 years old, and a peptic ulcer is still known to be caused by chronic stress. So just do the math on anxiety syndrome from the mother, depression from the father, heightened stress response from how your raised, and its actualy a wonder I made it to 38 before it turned to anxiety and panic disorder and I ended up blowing out my adrenals over it and it became chronic fatigue and Fibro.

By the way. I absolutely do not feel a ounce of sympathy for myself, nor do I blame anyone or anything. Life is what it is. You play the cards you get the best you can. Lots of people have a whole lot worse. Looking at life with a big picture viewpoint goes a long way, even if nothing else seems to help much.
Fibromyalgia, Chronic Fatigue, IBS, Diverticulitis, Costocondritis, Mild Hypertrophic Cardiomyopathy, Mild Hilar Lymphodenopathy, Depression, Anxiety. Near Constant Dyspnea. Disequilibrium, prolonged standing, walking, progresses late in day.

Klonopin, Percocet, Baclofen, Ibuprofen, Valerian, Greens Plus, Magnesium, Vitamin C, COQ 10, B Complex, Glucosomine, Condrotin, MSM.


Mazfire
Veteran Member


Date Joined Oct 2008
Total Posts : 1683
   Posted 12/24/2008 4:23 AM (GMT -7)   

major food for thought, Marlee- ive often wondered how much of this is pyschological, or a reaction to my surroundings, thankyou for posting this and getting the ball rolling,

Maz XX


            'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)                  
 
Panic Disorder, Agoraphobia, CFS, Fibromyalgia, TMJ disorder, Endometriosis, PCOD, Chronic E.N.T infections, Reactive Arthritis, GERD, Sinusitis, IBS,  Allergies, Glandular fever, Migraines, Anemia, Chemical/Noise/Light sensitivity, Trichotilomania, PTSD, Seasonal Mood  Disorder, OCD, Benign Vertigo,  Impaired immune system. Tachycardia, tinnitus, low clotting factor= bruising. Tendonitis, Bursitis.
Meds: Zoloft 150mg. Xanax 4mg. Celebrex. Mobic. Panadeine Forte. Digesic.
Multiple surgeries- I bear the scars of my poor physical health.
Age:28. First diagnosed at 14. Proud Aussie.
 
 

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