Hello Tod and sarahreidle. I am new here too but it looks like this is a new board.
Fibromyalgia steals more than just relationships, causes more than just pain.
It steals lives one day at a time…
Each day is pain, pain reduces energy, energy reduces quality of life. Fibrofog steals the most important thing… our ability to think and communicate. We loose words all the time, the phrase “it is on the tip of my tongue” was ment for fibromyalgia sufferers… it had to be because we live it daily. People think we are distracted, slow or unable to perform out jobs because we miss things, that we would otherwise not miss. If you are a supervisor it is even worse as employees chat over if you are drinking during your breaks because your speech may be slurred, or you may appear unattentive.
Our world shrinks on a daily basis.
We go on disability or loose our jobs, our world shrinks.
We experience fatigue, our world shrinks.
we loose our independance, our world shrinks.
Loved ones want to help but are frustrated, they see us in pain and can do nothing, outside friends and family members do not believe we are sick, children do not understand why we can not attend events with them…
Our world gets ever smaller…
It hurts to sit
it hurts to stand
even a loving hug can cause pain.
4 Responses to “fibromyalgia”
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I know what you mean about hugs, my wife suffers and there are many days when I give her a hug or a rub on her shoulders and she responds with and “OW” that hurts. So I walk away frustrated. The human touch keeps us close and without that distance begins.
I know what you mean…it’s hardest for me to tell my children…no mommy hurts too bad today. I try really hard to do as much as possible for my husband and kids on my “good days”…boy does that take on a new meaning. I never knew I could be in pain and still have “good days” but apparently…you can. at least I can…to an extent.
Thats what’s so bad about Fibromyalgia… I have had symptoms since I was a child but it didn’t become disabling till I was 42! I didn’t know what was wrong when I had to tell my kids that I was too tired or in too much pain… basically there were times when I was unavailable to them and had no idea why… I had the fatigue when I could only sleep for days but the doctor said it must be the flu… I ran a low grade fever for 9 years but no one knew why…, unexplained aches and pains, skin too sensitive to touch, migrianes, atypical bursitis, atypical tendonitis… all things that I now know was due to the fibro… but even after it hit me like a freight train it still took 5 years to finally get a diagnosis!!!! I even had one doctor ask me why I was wasting his time, all I needed was exercize! I went through the roof… here I had been on a waiting list to train for search and rescue… was walking 5+ miles a day and doing 1/2 day rock climbs on every other Saturday and he tried telling me all I needed was exercize because I could barely walk!!! I couldnt believe my ears!
I totally understand, I block so much pain that a touch brings it all home again! I usually do not tell my husband that it hurts when he touches my back unless it literally sends me through the roof because he is a touchy feely kind of guy and honestly if I am not in unreal pain, I am as well so this is doubly hard for me because I hurt all the time and sometimes the simplest touch can send me into god awful pain… That is usually when I have him get my ice packs from the freezer and have him rub my back with them. For me Ice is like a tonic when the skin and underlying muscles are so painful. For others heat is the answer but for me heat makes the muscles spasm more and things become totally intolerable very quickly