I'm quite frustrated with myself. It's been about three and a half years since i was diagnosed with FM. I finally got to a place of acceptance, six months ago, when my husband and some of my other family members decided that they were not going to let the issue go and pushed for me to see some specialists. They all want a different answer - not fibromyalgia. I have been to a neurologist, a cardiologist, and now I am supposed to see a rheumatologist I have had an MRI of my brain and a multitude of blood tests. They are now asking that I have a procedure to take a look at my heart - internally. I'm not going to go through with it. I am so tired of being poked and prodded and I just want this to all go away. Does anyone else ever feel this way? I'm exhausted and I feel like the more dr.'s that I see the more anxious I get. They all seem to have their ideas and concerns and it is stressing me out. Many of them are not 'fond' of "fibromyalgia" and yet all of the tests that are run continue to come out negative. My pain is better now, over the past two months, than it has been the past few years.....but I am so tired and I constantly deal with hives and swelling, restless nights and just a feeling of frustration.
I'm 38 years old. I'm tired. I want my life back. I want to feel like I have value and purpose. I want to wake up excited for each day. I want to go downhill skiing with my children rather than watching from the lodge. I want to be on the tube splashing through the water rather than watching from the back of the boat. I feel such guilt with accomplishing so little each day. It would be so much easier if this diagnosis required a cast or crutches.....almost as if it would be more accepted.View Thread
Ok...so....this is a really silly question...BUT....after the way the last 2 weeks have been going and feeling completely exhausted....It is taking everything out of me to make dinner for my family - and the truth is that they need to eat!!! lol!!! Does anyone have any ideas for those really simple meal ideas for days that are just tough? I have been trying to double up on things I am making so that I can pop one batch into the freezer for another day - BIG BLESSING on those days that I just can't manage! What are some of the things you do on those 'not so good' days?!?!View Thread
Thanks for the ideas BetteK! Just yesterday I was thinking that I desperately needed to get some easy meal ideas and ingredients on hands for those days that I feel I can barely lift my head off a pillow! lol!!! The fatigue has been all consuming lately and yet I know that my family still needs to eat!!! View Thread
Hi DebraBrooks! I will say that I have regular pain in my hands and have just about been tested for everything...with negative results. There are mornings that I wake up and I can barely even close my fingers and make a fist....the pain is so bad. It does always seem to get better as the day goes on. It's so hard to describe...it's as if every joint is locked in place and the muscles have contracted into tiny unstretchable pieces of rubber! lol!!!
I really hope that you find some relief in all of this!View Thread
Thank you all for the words of encouragement. I need to just take a break from it all...all the appointments.... and just try to find a place of "peace"....probably could add to that a little dose of acceptance too!
My mom was diagnosed years ago with FM. I was diagnosed 3 years ago with the same thing. My mom is constantly telling me that she thinks that what we have are two different things, that she is not convinced of my diagnosis. I have a family friend physician who is not convinced that my symptoms line up with FM and encouraged me to have an MRI to check for MS - which I did a few months back and it came back clean. My husband is insistent on me seeing a neurologist - he is not convinced that there is not more going on either. I am totally exhausted over the whole thing - I just want everyone to stop hounding me so I can move on with life! I feel like I'm trying to keep everyone happy! This is not something that I do not talk to anyone about. I don't share my diagnosis or struggle with ANY of my friends - they are completely unaware. I do not complain to my husband or mother ever - but I see my husband 'catching' me in painful moments, and I am so embarassed by it. I need some opinions / advice....I need to know if there are people out there with a FM diagnosis that are dealing with the same symptoms as me.....or if I should pursue a second opinion. Is what I'm experiencing 'normal'??
Along with terrible joint pain, I cannot tolerate the heat - my body swells (mainly from the thigh down) severely - to the point of not being able to wear shoes. I will literally have no ankles on a warm summer day. Exercise increases the swelling.
When this started three years ago I wasn't able to walk down the stairs from my bedroom - I would use heating pads for hours to allow me to slide slowly down the stairs on my butt. My ankles touching in bed would just about send me through the roof with pain. This intense pain lasted for about 4 months after which it calmed down and never got that severe again - but the joint pain affects me every single day - my head if turned in one direction for any period of time, will get literally stuck there.
I am constantly fighting hives and red warm itchy patches on my body - legs, hands, abdomen.
I get winded so easily - the smallest tasks put me out of breath
very painful to roll over in bed or to get up from a chair - always - it doesn't come and go - it is constant. Not only do my legs swell when I've been sitting too long but they forget how to do what they are supposed to. I was using my left arm to push my leg forward at a restaurant a couple of weeks ago - I couldn't make it go - it's so embarrassing.
My balance is off - I will fall over if I close my eyes in the shower. I cannot walk through a store without pushing a cart for fear that I will wobble into something.
I can't make my hands grip things - it's not really a matter of strength as much as they just don't seem to cooperate - my mind says to grip tightly and my hands don't do it.
Things like not knowing how to turn a water faucet on or spitting my mouthrinse on the floor because "time is up" are driving me crazy!!
When I look in the mirror parts of my face, through my vision, will be almost vibrating / wiggling....
I don't know .....I guess I don't even know what answers I'm looking for on here - I'm 38 years old - I feel like so much of the 'physical' part of my life has been taken from me - and yet my mind is out water skiing and hiking with my kids. I don't know who to ask for advice or where to turn with this. Is this FM? Do these symptoms fit into my diagnosis? Am I grasping for hope that it's something else that is fixable?View Thread
Thanks Squarley!! I think you are right.....seems that when I am preoccupied with something that I don't notice it nearly as much.....and the xanax also seems to be reducing it....ugh!!! The joy of all this junk!!! View Thread