You Are Not AloneAnother Story Of Just How It Is w/FMS

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jul 1, 2006.

  1. JLH

    JLH New Member

    If you are a newbie and wonder what other people with fibro feel like, here is another story from another RemedyFind.com member - his name is Rick C.

    ............

    After collapsing while mowing my lawn I was admitted to intensive care for 5 days in April of 2002. After being jabbed with everything and having an angiogram (to check my heart), I was discharged promptly and told to go home. I felt pain in every cell of my body and was so fatigued I was unable to get out of bed. This was my dramatic introduction to Fibromyalgia.

    Now, in March 2006 I am still plagued with the same pain and fatigue and have been to hell and back over recent years. I slowly lost my executive job, my six figure income, lost my self esteem, lost my day to day relationships, lost my place in society, and lost my health. I suffer (yes correct word) chronic pain, chronic fatigue, some depression, some anxiety, sleep apnea, poor sleep, blurred vision, muscle spasms/jerking movements, vague memory and cognitive skills..... I cannot be in the sun or surf (but live by the beach) cannot walk more than 5-10 min max without aggravated pain later. I love yoga stretching but everything physical hurts........ a lot.

    I am now disabled, mostly house bound (by choice), and deeply dependent on morphine & my partner. I have three beautiful young kids 3, 6 & 14 that keep me chugging along and suck that elusive smile out of me.

    Sound dramatic, sound self absorbed - you are correct on both counts, but without much exaggeration this is the state of my life.

    I have seen and still do see endless doctors and specialists who mostly shake their heads and go - “crap life but not much to do about it”. Rheumatologists have had me steroids and chemotherapy drugs. I have had a skin biopsy, muscle biopsy, xrays, cat scans, ekg, ultrasounds, several antidepressants, a handful of psychologists and psychiatrists (weird people), immunity & enzyme professors, sleep specialists, optometry specialists and various others 'experts'. I have had terminal diagnosis right through to prescribed "all you need to do is go for regular walks".

    I have a very good thorough and empathetic GP, and a world class pain and a world class immunologist (specialising in FM). I am on 12hr release morphine which controls the pain when I am sedentary, and an antidepressant to keep me calm and assist with down times. I use a CPAP machine at night but still sleep badly. I am still experimenting with various medications to try and extract more improvement. I have tried a bunch but none have offered sufficient benefit over the poor side effects.

    I love life but not my own, love my kids but cannot play with them much, love my partner but cannot get much beyond a 'carers' relationship. Life is not much fun. I keep looking for a chance to squeeze a laugh or fun from it..... but it’s a rare event.

    This all sounds and reads rather pathetic but that is the way it is. I have learned empathy for the disabled, less judgmental about all those 'lazy buggers' just putting it on, and strive for fun.

    End.
  2. Pianowoman

    Pianowoman New Member

  3. carebelle

    carebelle New Member

    wow ,This sounds like where none of us want to be.
    It also sounds to me like there is to much meds at once. How much is experimental ,so why put things into your body that you aren't sure what they will do ?

    I took steroids gained 100 lbs from them and they never helped me with anything. I felt worse on them. I can't help but think that doctor was just trying something in the hopes it would help ,it didn't and now Id give anything to have not gain the extra weight.

    I think this board has been one of the best things I have found .It gives me something to think about, other then the pain .It keeps my mind thinking ,my hands busy and my hope alive.

    I really think I have found more knowledge here about this DD then what any doctor has helped me with.

    I also think many are like JOB in the bible people can loose everything because of this DD, but like JOB we can learn and move forward in life with faith .We have to believe things will get better or we condemn ourselves before we are given a chance to move towards healing.

  4. janieb

    janieb New Member

    helped me today.

    I, too, worked in an executive position for 40 years. The fibro took over the last 10 of those years. However, it was constant pain, but not as severe as yours.

    Knowing I was never going to make it to 65 to retire, I was able to negotiate an early retirement contract. That, plus a wonderful retirement package has been a life-saver. Not that we're rolling in it, but we are comfortable. I dread the day I turn 65 and my former employer stops paying our health insurance. Since I've found that all the "freebies" are for those who didn't have good jobs or plan, I realize we're going to have to pay dearly for everything.

    This morning I was sitting on the "pity pot," trying to clean house, do laundry, etc. and hurting badly. I was forced to take two tramadol, which helps me quite a bit.

    Now I'm so grateful, that I can do what I do, and control the pain. Ya, there are days I can't do anything, but not too many.

    Blessings on you, your partner and your children. Sometimes, life just sucks. But, you're so well written and I would assume, well spoken that I'm thinking you have the ability to help many people. Maybe I'm wrong, but you sure helped me.

    Blessings,

    janieb
    [This Message was Edited on 07/02/2006]
  5. JLH

    JLH New Member

    This board has also been a tremendous help to me. I have learned a lot from it, rather than my doctor.

    If it had not been from reading on this board, I would have never learned about Cymbalta or Neurotin, both of which have helped me tremendously.