Practical Pain Management Community Advice

What Fibromyalgia does to me.

From: hungryeyes - 5 years 19 weeks ago

Does anyone feel the way I do? Are you so totally exhausted you cannot do the things you once enjoyed? I used to love reading a good book but now I get only half way down a page and my head starts drifting forwards due to extreme tiredness, I can hardly keep my eyes open, I need matchsticks to hold my lids up. I then start to question myself because I have slept most of the day so how much sleep does my body need before I can function normally again? Yet I have been told the sleep I do get is not adequate, it is not giving me the quality of sleep my body so desperatly needs.

When I had my accident back in 2003 when I broke 12 bones due to a 30 foot fall I started to do a brand new hobby, that of card making. I really enjoyed making cards for my family and friends but today I cannot even do that because now the thought of getting my stuff together tires me just at the thought of it. Somedays, well if I am honest most days I am too tired to have a shower! OMG! I was NEVER this way, I was alway scrupuously clean in my hygeine department, it frustrates me no end because all I can manage is what I call a top and tale, basically I use a chair to sit at the sink in my bathroom and have a flannel wash. I hate it! My hair doesn't get washed as often as I would like either because it is just so tiring! When I do wash my hair, I then have to dry it and then I use my straitghteners on it, but by this time my whole body is warning me to sit down otherwise I will fall down with exhaustion. I get ringing in my ears then my whole body goes wet! I cry most days because I feel like I do not have a life anymore, I can hardly walk now due to the pain. I am supported by my 2 crutches, yes crutches and not walking sticks, this is because I do not want to feel I am getting old before my time. When on the very rare occasion I do go to the supermarket with my Carer I look on at the people who use the buggies in store to make their visit less painful getting around, but I refuse to use them because again I don't want to appear I am getting old before my time. How stupid I am right? I know I am, really I should be pushed about in a wheelchair now and my daughter's whom I love so much want to buy me a wheelchair, but I tell them I am not that bad when in reality I AM THAT BAD! The consequence of me pushing my body to do this extra hurdle is when I do return home I fall asleep like a baby and that is then me completely useless then for 2 or 3 days because I won't fall in line with what many other Fibromyalgia sufferers do. Why am I doing this to myself? Why is my body letting me down? WHY do I hurt so bad? WHY do I feel so isolated? WHY am I so extremely tired 24/7? WHY do I not understand the concept of pain? Surely when one breaks a bone it heals and then one should be fine, so WHY is it I am in all this pain still?

I feel my life is just an existance, I do not have a life! At first, at the beginning of my accident I felt optimistic I was going to get better, I even went back to college to study I.T. but as the month's went by, my body went spiralling downhill as I became more and more lethargic. Now I cannot commit to anything! I therefore now feel I am a prisoner in my own home. It doesn't help matters the fact I live alone, I feel I am becoming institutionalised in my own home. The only thing I do is watch T.V. but then I don't even do that, because I can be looking in the direction of my T.V. but my mind is not on it because I am trying so hard to get comfortable to eleviate the pain I am in. I even keep my T.V. on 24/7 because I am lonely plus scared that I now live on my own, my T.V. is my constant companion. Even the morphine doesn't take all the pain away, it just takes off the edge. I tried to come off the morphine myself one day and I just could not believe the reaction after 3 hours of not taking my normal dose at the normal time of taking it. My whole body went into 'Cold Turkey' syndrome! It was really scary! There was one thing I realised what was happening to me and it was like my feet was not touching the ground when I walked, I felt disorientated, for some strange reason I wanted to open my bowels, I thought at first I was imagening it but no it was definitely happening. I excreted more than I would normally excrete, it was like me having an enema, lol! now I know how to cure my constipation, just not to take my morphine at the normal time. I felt like I had a Colonic Irrogation, I think that is what it is called, whereas one's contents are completely removed from their colon with the help of a machine. For the first time in a long time I had a flat stomach, so it does have it's advantages, but I seriously would NOT reccomend it to anyone so PLEASE DO NOT TRY THIS YOURSELF! I do believe too I was putting my life in danger because one of the things I did notice was I started getting very fast palpitations of my heart. When I finally took my normal dose of morphine be it 4 hours late I slept like a baby AGAIN for the rest of the day and night| waking periodically due to the chronic pain I was in.

I keep having to stop typing because the pain in my back now out of 10 is a 9! I CAN'T STAND THIS PAIN! I feel sick but then it is either as a result of my morphine or because of the excruciating pain I am in right now. I believe it to be the latter. I used to teach Salsa dancing at a club in Manchester called Cococabana's, I used to love dancing. I have many beautiful Salsa dresses and shoes in my wardrobe. My daughter's keep asking me to put them on Ebay but I don't want to, that will mean to me I have lost the battle. I cry because of the way my right foot is, it took the brunt of my fall and my heel was completely shattered as a result. What is strange is that I have had Oedema since my accident which never goes away but does get worse when I walk due to standing too long and also due to pain.

I have purposely cut myself off from my friends too! I don't look like they do now, I don't act like they do now, but worse I don't feel the same way they do now because I am ALWAYS in so much pain and I am ALWAYS so extremely tired! Does anyone out there feel the way I do or am I going crazy?

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4 Responses

Is this good advice?

i know.i look terrible now and about the hygeine,i had gotten to the point of not bathing for days in a row,thats disgusting,but i just wanted to die,i begged for it.i aid on the floor of my bathroom one day for 8 hours trying to get out the poop.i fell asleep or passed out laying in pee and whatever.i did not want an ambulance,by that time i was begging for mercy not to be dead this way,some dignity please.i could even wash my own hair becuz i couldnt use my arms,i lost over 50 lbs becuz i couldnt fix meals,i was so helpless and the worsed of it was when i asked for help,everyone was too mother finally came and started feeding me.i ate and slept for awhile.i noticed drinking water made my body feel better even though i hate water,lol.anger anger is what i was having that turned into self pity then to nothing.i wanted death.i didnt care about anything anymore.i was in full blown depression.i dont know what was worse and that is bad.
dont give up!!!! you have your computer,vent all you want,i will be praying for you,i dont know you and im angry for you also,but you let go of anger ect,all the bad stuff when you can,it will make you feel better inside.
i think i was going crazy,i must have been at times but with severe pain for so long,anyone would!!!!!!
you must take whatever energy you have and use it to manage your way out of as much pain,depression,ect that you have.i beleive you can do it!!!dont give up!

Is this good advice?

Hi Eyes and Beggar...I just registered a few minutes ago..Anyways I was actually surfing sites, desperately looking for an alternative for my diabetic nerve pain. I have a dr. appointment tomorrow and I want to suggest something other then upin my dose of oxy's. There's not too much action on this site but I'll write for a bit till I can't sit any longer and hope that what ever I'm going to write, someone will get something out of this..
It's really ironic, I've fought alcoholism and sedatives abuse most of my life and WON!! Yet now I'm on this opiate that could very well be the beginning of my end. My list of meds are longer now then back in the day when I was
One thing I'll say that just popped in my head is that I'm not a very religious person, I have some beliefs that fade in and out. When they fade back in I think, there's gotta be something out there...and what ever is out there has to have a purpose for me. Why else would I still be alive?? I've cheated death soooo many times and probably way more times that I'm not even aware of. I Must be on this planet for a reason...Haven't figured it out yet but this keeps me going to fight yet another shit storm... Anyways, this is one thought of a few that I get once in awhile.
Eyes, I scanned most of what you wrote..Wow you can It's a good thing, Like beggar mentioned, we all need to vent. Your tired because pain alone totally exhausts a person, not to mention your list of meds you take. Putting just those few things aside...You may have read this before some where but my mental health worker said that depression can be as debilitating as most physically challenged people...I'm just quoting his words but I believe it...
Panic attacks usually go hand in hand with depression and anyone who's ever had one will say that when you have a gooder, all you want is sleep...
K, I'm getting to the point where I can hardly sit here but still have lots to
Like again what Beggar said, find a Dr. who will spend more then 5 minutes and who makes you feel that they're actually listening to you and not just saying yup yup as they write in their pad...I find that a lot of Dr.s don't want to take on patients as complex..It's all about turn around...
And yes most time, a good pharmacist knows more about your drug interactions..
If you get a sudden urge to make cards or what ever hobby it is, Don't think about all the steps you have need to do to actually start..Your overwhelming yourself before starting..I do that to..and before I know it, I'm back in bed wishing for sleep...
K, my whole body is on fire now...I have to go and do my routine to put it out..
These are just my thoughts but I really do hope that you and others might find something positive out of this.. Peace..

Is this good advice?

Although it's been some time since your post I cannot sit here reading this and not reply. It's what I'd hope someone would do for me.
To answer your question- YES- there are others out there who feel the way you do - don't think for one minute that you're alone. Please don't give up! I am SO happy I kept fighting. I'm still fighting, struggling, it is NOT easy by far, however, it has gotten better and it can and will get better for you too- I just know it will because I read depression in your post and once you overcome some of that your life will be better, HOW? By taking life minute to minute, step by step, day to day - litterally, and you'll regain some energy. Positive thinking helps so very much and it doesn't take any energy to do this.
Since being diagnosed with severe fibro in 2001 I've been to hell and back- I never dreamed my life would be as it is, always thought they'd find a cure- or something - anything!
Have you read the HGH article right here in this website? It's how I happened here and it sounds VERY hopefull!
One more thing-
If you're going crazy- you have company! lol
I hope you're feeling better : )

tropi gal

Is this good advice?

I am one of those fibromyalgia people. I was diagnosed in 1989. Can track it backI have to 13 years old. I am a hermit. I used to run/walk 4miles a day. Now I am pretty much in my chair all day. It keeps my feet from swelling and like you moving takes a tremendous amount of energy. Like you showers are far and few between. My inability to clean my house is a constant reminder of who I have become. My greatest fear is that someone will enter my house. No one could understand why I 'allow myself' to live this way. Ffibromyalgia is about fatigue and everybody I know is fatigued! Yoh can't explain that even breathing makes you tired somedays. But enough about the daily reality, I want to share with you how to survive.
You must learn how to grieve. There are stages to it. I have spent almost thirty years grieving as I experienced bit by bit my life as i knew it disappearing or changing. As an example, i had large deck and each time I walked up it's steps I knew I might fall again. It happened on a regular basis. So, I had a rail installed. When I saw the rail for the first time i sat on the steps and sobbed for about an hour. It was the first time that I realized I was grieving because I was no longer me. I couldn't even walk up stairs alone. Bit it was a turning point in my life. I do not like the person that i have become,but I am now able to go through the steps of grief faster and it keeps me sane. Look up how to grieve. Work out what you have lost and it frees up the emotions that allow you to survive. I wish you peace in the midst of the storm. Oldtimer