guilt and shame Hello. I am new to this community and was hoping someone who has lived w. FM for a while would share some of their experiences and feelings about having an invisible illness.
I've been on the diagnostic merry-go-round for several years but the past year has been non-stop. Reading different articles about fm, I realize how fortunate I am to have gotten many of the exclusion tests out of the way in only a year. I went from my doctors thinking I had MS or some other demyelinating disorder, to being told my pain, muscle spasms, fatigue, weakness etc are a result of previously sustained trauma to my muscular-skeletal system and depression, to this new tentative diagnosis of FM. I am again very fortunate that I live in a city which houses the leading rehabilitation hospital in the country and have been referred to them for fibro evaluation which hopefully I will be able to have soon.
Here's the thing. I have been trying to research FM from all sides - those in the medical community who support the diagnosis and hypothesis that it is a neurological disorder, those who believe it is psychosocial, those who have been diagnosed and are managing the condition, and those who are simply trying to figure out whether their acquaintances, co-workers, family members etc are really physically ill or are they just people who can't handle reality. I'm not sure what I think. I know I perceive my pain as real, the cold fire which seems to have replaced the blood in my veins and runs through me making me feel as if I'm being flayed from the inside out. The frequent migraines, the hot and cold flashes, the trouble sleeping, the relentless dull awl that bores into my back in a spot under my shoulder. The weakness in my legs and the crippling fatigue. These are all real - to me. Other symptoms can be seen, the muscle spasms, gait issues and red eyes. The 30 lbs I've lost without trying. These are noticeable by people other than me. I've read story after story, people I don't know describing what I feel. Shouldn't that be enough to convince me? But I also know that as the anti-fibro medical camp points out, I do have a history of depression and emotional problems.....I've had panic attacks over the last 6 years, so I guess you could say I have a history of generalized anxiety as well.
I feel so conflicted, guilty and ashamed. What if through my mental weaknesses, I've made myself sick? I thought I had for the most part dealt with my child-hood emotional traumas. I've gone to counseling several times over the past 20 years, accepted that I need medication for my depression and seek out help when I realize I'm going over the edge. Over the past 10 years I have started trying to take responsibility for my physical health as well by getting regular yearly check-ups, eating right, trying to fit in exercise. I attended physical therapy after the car accidents which damaged my back and made the changes suggested. But what if after all is said and done, I'm just really a bad, weak, lazy person who doesn't want to have to work or face up to my responsibilities as a parent, daughter, sister, friend etc. What if I'm so far gone, that I've now made myself sick instead of facing reality?
Please, please, please, don't take this as an attack on anyone here or in the greater fm community. I don't know what the truth is and it's probably different for everyone, so that's what I'm trying to find out. I just know I have to do something, I can't live this way. If it is my fault, if I'm doing this to my body subconsciously, than I will go to whatever counseling, exercise programs etc suggested in order to face up to it. If it does have it's roots in neurology, than again, I will do whatever it takes to manage this.
Again, I truly hope I haven't offended anyone. I just need to figure this out so I can do something about it.
Thank you for listening.
I've been on the diagnostic merry-go-round for several years but the past year has been non-stop. Reading different articles about fm, I realize how fortunate I am to have gotten many of the exclusion tests out of the way in only a year. I went from my doctors thinking I had MS or some other demyelinating disorder, to being told my pain, muscle spasms, fatigue, weakness etc are a result of previously sustained trauma to my muscular-skeletal system and depression, to this new tentative diagnosis of FM. I am again very fortunate that I live in a city which houses the leading rehabilitation hospital in the country and have been referred to them for fibro evaluation which hopefully I will be able to have soon.
Here's the thing. I have been trying to research FM from all sides - those in the medical community who support the diagnosis and hypothesis that it is a neurological disorder, those who believe it is psychosocial, those who have been diagnosed and are managing the condition, and those who are simply trying to figure out whether their acquaintances, co-workers, family members etc are really physically ill or are they just people who can't handle reality. I'm not sure what I think. I know I perceive my pain as real, the cold fire which seems to have replaced the blood in my veins and runs through me making me feel as if I'm being flayed from the inside out. The frequent migraines, the hot and cold flashes, the trouble sleeping, the relentless dull awl that bores into my back in a spot under my shoulder. The weakness in my legs and the crippling fatigue. These are all real - to me. Other symptoms can be seen, the muscle spasms, gait issues and red eyes. The 30 lbs I've lost without trying. These are noticeable by people other than me. I've read story after story, people I don't know describing what I feel. Shouldn't that be enough to convince me? But I also know that as the anti-fibro medical camp points out, I do have a history of depression and emotional problems.....I've had panic attacks over the last 6 years, so I guess you could say I have a history of generalized anxiety as well.
I feel so conflicted, guilty and ashamed. What if through my mental weaknesses, I've made myself sick? I thought I had for the most part dealt with my child-hood emotional traumas. I've gone to counseling several times over the past 20 years, accepted that I need medication for my depression and seek out help when I realize I'm going over the edge. Over the past 10 years I have started trying to take responsibility for my physical health as well by getting regular yearly check-ups, eating right, trying to fit in exercise. I attended physical therapy after the car accidents which damaged my back and made the changes suggested. But what if after all is said and done, I'm just really a bad, weak, lazy person who doesn't want to have to work or face up to my responsibilities as a parent, daughter, sister, friend etc. What if I'm so far gone, that I've now made myself sick instead of facing reality?
Please, please, please, don't take this as an attack on anyone here or in the greater fm community. I don't know what the truth is and it's probably different for everyone, so that's what I'm trying to find out. I just know I have to do something, I can't live this way. If it is my fault, if I'm doing this to my body subconsciously, than I will go to whatever counseling, exercise programs etc suggested in order to face up to it. If it does have it's roots in neurology, than again, I will do whatever it takes to manage this.
Again, I truly hope I haven't offended anyone. I just need to figure this out so I can do something about it.
Thank you for listening.
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So I stopped everything but the effexor and went back to work, part time for a few weeks and than back to full. I felt fantastic for two full weeks, the memory is on my current top ten desert island must haves. Then slowly but surely I stated to wear down again. I feel like a worn out toy who is left turned on all the time. My limp returned. I started to have muscle spasms all over, not just my legs. Things started to really hurt again. Added bonus, my skin often started feeling as if I had been sunburnt....or flayed from the inside. There were/are times my bf will just gently caress me and I have to beg him to stop because it feels like his fingers are stroking me with trails of fire. More than anyone, he's witnessed what's happened to me. How much I've changed. 
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