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Living with Fibromyalgia

This section is a place to share stories about Living with Fibromyalgia.

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fibromyalgia


by: jeannie on Fri, Oct 12 2007

To the 43 yr old nurse with fibro..
and others who feel trapped and disrespected by your physician -
believe in yourself and your ability to come thru this!

I was a support group leader and found that a large percentage of our group had encountered drs who, due to their own lack of medical knowledge and respect for women came to the lazy/crazy stuff. Some women have felt so totally betrayed by that, and the friends and family who do not understand fibro or believe that it exists (yes, there are some drs who STILL don’t get it) that they wanted to end their lives.

This is the time to get angry, to see a rheumatologist (be sure that dr acknowledges the condition before you spend money on the office visit)
and, be prepared to change how you live.

Stress is our enemy. Lack of sleep is the next worst. Letting people
demand too much of us and trying to please everyone and do too much come next. Failing to take time to inventory your life, to establish priorities REAL priorities, will make matters worse. When we don’t sleep well, we hurt. Period.

There is no one treatment or medication that helps us all. We need to experiment. Some are helped by guifenisne (sorry about that spelling!) Some are helped by flexiril to relax muscles and aid in sleep. Some take vicoden when things are really bad. Warm water swims and soaks at less than 102*
aids greatly. I am good for weeks after an hour in a warm tank.

Most of us sleep with a bed full of pillows. I have 7 of various kinds for various purposes. The soft down pillows on top are the easiest on my bones.

Mild, gentle exercise is important and the studies by top fibro researchers in US & Denmark confirm we do better when we do not give in to the pain and avoid movement. Bike riding seems to be a great help in the studies.

Caffine containing things are thought to increase problems.

We are always worse in winter and when the barometric pressure changes. We all walk like old people (and feel like it too) on the first new rain.

Fibro changes from week to week, from month to month and year to year. It is worse in time of turmoil and crisis. But it is much better in warm weather.

We crave carbs because they transform into serotonin that we need to address our symptoms and pain. Our bodies know what they need. The problem is maintaining healthy weight!

One third of us will develop lupus one third arthritis, and one third diabetes. I have developed diabetes and spinal stenosis, and carpal tunnel. This life is not for sissies, hey? Well, it is hard and very hard sometimes. But I do believe that the saying of native americans has merit: those of us with fibro have a secret, and when we deal with it, we get better.

The medical world also knows that most of us had a childhood of unrelenting stress. I did. Don’t let a dr use that to give you the ‘you must be (any word meaning emotionally off kilter)” But truthfully, some of us are and so are those with no medical issues.

My advise: simplify your life, don’t try to be super nurse, super mom, super daughter, super hostess,
super wife. The holidays beat us to a pulp. SIMPLIFY! Make few promises, and qualify them with “I
will do my best but don’t count on it”

Take time to be good to yourself and know that you can find a modified life that will be what you need. It is a life changing condition but if done properly you can find a new career (I went from administrator
to jewelry designer with the state helping with my education. I have a tranqil life, but while in your beginning stage, it was chaos, fear, panic, dispair, poverty, and rage.

I changed my career, priorities, friends, and turned inward to nurture myself and forgave myself for not having lived up to my type A personality and ambition.

It can be a time to find inner peace and truly satisfying life.

Oh, I tried desepramine for a while, no drug works indefinately for fibro so you may have to switch around.

Good luck! I will say a prayer for you tonight. Oh,ps. look for a fibromyalgia support group in your area or one of the national groups like the Fibromyalgia Network. Great folks.. and you will find the latest in research, treatments, laws, and meds.

[moderator note: You may also visit the healthchannels forum for Fibromyalgia support: Join our Fibromyalgia forum

Comment on this

Comments
  1. Tue, Jan 08 2008
    I am a 44 year old male just diagnosed with FM.I just read your posting and it made me cry. You are so right in all you said. I was in constant pain a...Read

October 2007

  • out of options - by stacy - (Tue, Oct 23 2007)
    Hello, out there. I am wondering if anyone could help me. I am 27 years old with 3 small children. I have been struggling with these squamous lesions for 10 yrs. I have had so many LEAPS and it keeps coming back, over and over. [more..]
  • living in chronic pain please read esp doctors - by Lynn - (Mon, Oct 22 2007)
    i was a strong independent person before i/c [interstitial cystitis]. 6 years ago and many tests on my bladder — some were supposed to be under general anesthesia (i found out later) — after coming out of the office worse then when i came in and many days and nights living in the bathroom in tears, i finally went in to my pcp doctor and said I don’t want to be tested and hurt anymore. she said ok and put me on many meds. it took a long time to get this right and i am still housebound and bed bound (bathroom bound) to this day. after 8 years, my doctor, who i see every month to every three months, moved to walla walla washington, leaving me with the only one doctor in their practice. the first time i saw her she said, you’re on a lot of meds but see ya in three months (i also had shingles and she knew it.) never examined me. 3 months later and she came in to the room with a pain contract, threw it at me said she did not get paid for filling scripts and that every time she had to fill my meds she wasn’t making any money. then said she didn’t get paid to look at charts and that she couldn’t even be in the room with me (i didn’t put myself on this many meds.) i was even sent to a pain specialist who upped my meds and put me on more meds. he is a 45 minute drive from my house and being in a car is very painful for me so my old pcp said she would cont. my care. i was so in disbelief i couldn’t do anything but cry. she told me to wait in chairs. when the nurse came and got me i couldn’t talk or breathe. i thought i was having a heart attack she kept saying she was sorry for the doctor. she got my husband and wheeled me out. i still cannot believe a doctor would do this after i just said hello. 4 days later i get a letter saying they would not care for me and i needed too see a pain doctor. I have an hmo insurance through my husband’s work. i do not drive because of by meds and illness. what happened to compassion? when did people living with debilitating chronic pain and still raise a daughter/be a wife become a criminal? it’s hard enough for my husband not being able to have relations very often because of the incredible pain. I went to a new, family doctor who cut me to one long acting and one short term drug after being on many other drugs that worked 2 out of 7 days for 6 years. it has been 7 days, i have not had withdrawal symtoms [symptoms] but i am back to living with my knees in my chest in tears. i almost went to the er last night (i have only been once in 8 years.) i am not supposed to see my new pcp for a month and i am afraid to tell him how bad i hurt. i don’t want him to dump me, too. i don’t know what to do. i just want to live my life with a few good days. doctors who care seem to not want to treat anyone who needs pain meds or more than 2 of anything. please help if you have any advice. i have i/c and firbro m [fibromyalgia] along with vonwilabrands, a blood disorder that contributes to horrible periods, and Thalassemia minor (a blood disease that makes you anemic.) i feel like a genetic reject and when doctors don’t understand it makes you feel even more hopeless. i hope if your a doctor you will read this and remember i am still a human and treat the conditions, not in this day and age limit pain control for chronic pain patients. [more..]
  • New to this but not to the pain - by Pete - (Mon, Oct 22 2007)
    Hello, my name is Pete and I live in Bletchley England. I have recently been diagnosed with Fibromyalgia. I may be new to the disease but certainly not to the pain. My daughter suffers with it terribly and her consultant told her it is hereditary, that is where I come in. I am soon to retire, and did not know men could get it, but some days the pain is so bad and pins and needles, my joints hurt so much, and tired, I am ALWAYS so tired I get up in the morning as tired as I went to bed, but I only have two or three hours sleep a night. [more..]
  • fibromyalgia - by jeannie - (Fri, Oct 12 2007)
    To the 43 yr old nurse with fibro.. and others who feel trapped and disrespected by your physician - believe in yourself and your ability to come thru this! [more..]
  • Anyone know about guaifensin protocol? - by LTreece - (Thu, Oct 11 2007)
    I am 43 yr old female diagnosed with fm 9 yrs ago. I was prescribed lg doses of pamelor as treatment. Prior to starting this med i was thin but within a yr of taking this med i gained 80lbs and continued to gain. I haven’t been able to lose the wt no matter what i try. I became very frustrated with the doctors — they made me feel like i was crazy & lazy. [more..]
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