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jeanetter44 Posts: 146
Member
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I've been to see specialists, but prefer my PCP the most. He's been my doctor for over twenty years and doesn't take the med free approach crap like my rheumy does. I take pain meds and sleep meds and do not apologize for it. I read your original post and it sounded JUST LIKE ME.. "Like I said I am new to this. I have to admit a few years ago I would have probably said I didn't believe in fibromyalgia, and that the women who claimed to have it were faking it and just lazy. As I have learned the hard way, It's very real and I really hate it. There are no support groups where I live which I would really like to go to. I hate it hate it hate it!!!!! It's not fair! I lost my life! I'm 41 today and this isn't how I pictured my life. This isn't me and my life. It can't be." I first had symptoms on 6/15/09 and had to quit my job the following Sept, haven't been able to work since. I have pain everyday everywhere and the meds help but in no way get rid of the pain. The Fibro really loves my neck and upper shoulder area, I found that myofascial release helps keep my head mobile, I haven't been able to see him since Aug and "injured" myself when I got my hair done and laid back in the sink for the rinse. Done it many times before but this time and hour and half later, zero mobility in my head and had to resort to the neck collar again. I've tried Cymbalta, and Savella...both with terrible side effects. Also Lyrica which made me feel drunk so I stopped taking it. My aunt takes Lyrica and has gained 45 lbs and my PT warned me about weight gain with Lyrica when I first started it. So my question is are you taking Lyrica? I now take Neurontin have been for three months and haven't noticed a difference. When the docs explain how it is supposed to work, it makes sense, but then doesn't work on my body. I vacuumed Last month and was in bed for a week. Unbelievable. I too am 41 and can't believe this is now my life. It's so unfair. Plus the doctors who think you are making it up, I couldn't make this up, for those who know me know I am not that creative!!! lol...Last week my entire head went numb. WEIRD things like that over the course of a year and a half. I never know what each day will bring and am in meltdown over my life and how this is playing out for me. Since April, it has spread EVERYWHERE! So many sypmtoms/effects of Fibromyalgia. My father used to say the same thing about Fibro sufferers that's why I had such a hard time with the initial diagnosis. I didn't want it. Plus I also knew it was something that was never going to go away. Unacceptable!!! I wouldn't wish this on anyone. Was tested for MS as well, because I have the squeezing feeling around my back and ribs and get this...I have random incontinence!!! It usually happens when I get out of the shower and there it all goes I don't start it and can't stop it. Voluntarily gave my car back to Wells Fargo, they would not work with me on the lease. I am on welfare now, I've applied for Social Security disability they had me go see one of their pshychologists, I don't know why or what it means. I know my doctor did also put down anxiety and depression in addition to Fibromyalgia. My chiro gave me this article saying the College of Rheumy is trying to change the way it is diagnosed one way to identify what LEVEL of fibro one has. I've talked to alot of people and have read NUMEROUS posts and no doubt there are different levels one experiences this "syndrome". My Aunt says she has it and she said "Yeah once in awhile I get this awful pain in my shoulder".....I was like "WHAT???" We do NOT have the same thing here! GO AWAY! LOL! I'm just kidding, I would never say that to her, but that's what I felt like inside (not nice I know). I'm not the same person I used to be and have no clue as to who I am today because of this, I am hoping that will change with time. As I can't stand to live like this much longer. Something "good" will happen, life just doesn't work that way...eventually something good happens, even if it is acceptance and a better attitude. I'll take it! I'm so sorry you have this. I wish no one had to have this monster. Jeanie I am not a doctor nor a health professional. All comments are based on personal experience.
“Love, we say, is life; but love without hope and faith is agonizing death” Elbert Hubbard
Percocet 10/325 mg 4 x's daily
Seroquel 200mg at bedtime
Klonopin 2mg at bedtime
Multivatimin
Calcium plus D
Tried numerous NSaid's and muscle relaxers (no help)
Cymbalta/Savella (made me WIRED, heart racing)
Lyrica (dizziness, depth perception skewed)
Trigger Point injections no help. Makes me bedridden for 4-5 days.
PT three times, makes worse.
Tried Gluten Free diet (no help) |
you have come to a great place for support, education and understanding. You are not alone and we will help you through whatever we can.