I need some advice....
sssfletcher posted:
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?
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?
2 Replies |Watch This Discussion | Report This| Share this:I need some advice....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'?? <br /><br />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.<br /><br />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. <br /><br />I am constantly fighting hives and red warm itchy patches on my body - legs, hands, abdomen.<br /><br />I get winded so easily - the smallest tasks put me out of breath<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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!! <br /><br />When I look in the mirror parts of my face, through my vision, will be almost vibrating / wiggling....<br /><br />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?
Dollbug responded:
Hello and welcome....MiMi in NC....sorry that you are dealing with so much right now...I do know that FM is a very mean and ugly illness....and very unpredictable about what may or may not happen from day to day and sometimes, it might even be every hour or so....
I do not think that FM causes swelling....I know that at one point and time my hands felt like they were swollen but I have nothing showing which indicated that they were...(I have had carpal tunnel surgery several times on both hands and still have weakness in them)...
I do know that I have also had problems with balancing...I have actually fallen twice outside and broke each wrist one time....and being confused is also part of FM....I can definitely relate to this...it seems like sometimes that my mind and my body do not even belong to each other....sounds odd I know...but so very true...I do not understand this nor do I even worry about it any longer...
A lot of us FMers have had multiple health issues also...so perhaps you have something else going on...it would probably be a good idea to get another doctor's opinion...I do know that when I first got sick I had several health issues going on but my doctor thought that I was just depressed...(NOT)...and only when we got to the root of each issue did I finally got to the point of getting better...
I also have chronic fatigue and the doctor has told me that there is nothing that will help this....I continue though to try to find something that might work on this...
I would encourage you to be sure and ask your doctor to check your Vitamin D level...and probably your Vitamin B's as well....low Vitamin D is common in a lot of people these days and it can also affect additional pain for some of us and affect other illnesses as well...this is a simple blood test...but you MUST ASK the doctor to do it...as it is not included in the normal bloodwork that the doctors do...
I am sure that you will find lots of good tools and tips here that might help you cope better....and please know that we know and understand just how you feel...so hang in here with us...
Learning how to pace, pace and pace even more is so important...this is so hard for a lot of people to do...but once you figure out how to do it...it makes things so much easier for you...
Take care and good luck...
MiMi
I do not think that FM causes swelling....I know that at one point and time my hands felt like they were swollen but I have nothing showing which indicated that they were...(I have had carpal tunnel surgery several times on both hands and still have weakness in them)...
I do know that I have also had problems with balancing...I have actually fallen twice outside and broke each wrist one time....and being confused is also part of FM....I can definitely relate to this...it seems like sometimes that my mind and my body do not even belong to each other....sounds odd I know...but so very true...I do not understand this nor do I even worry about it any longer...
A lot of us FMers have had multiple health issues also...so perhaps you have something else going on...it would probably be a good idea to get another doctor's opinion...I do know that when I first got sick I had several health issues going on but my doctor thought that I was just depressed...(NOT)...and only when we got to the root of each issue did I finally got to the point of getting better...
I also have chronic fatigue and the doctor has told me that there is nothing that will help this....I continue though to try to find something that might work on this...
I would encourage you to be sure and ask your doctor to check your Vitamin D level...and probably your Vitamin B's as well....low Vitamin D is common in a lot of people these days and it can also affect additional pain for some of us and affect other illnesses as well...this is a simple blood test...but you MUST ASK the doctor to do it...as it is not included in the normal bloodwork that the doctors do...
I am sure that you will find lots of good tools and tips here that might help you cope better....and please know that we know and understand just how you feel...so hang in here with us...
Learning how to pace, pace and pace even more is so important...this is so hard for a lot of people to do...but once you figure out how to do it...it makes things so much easier for you...
Take care and good luck...
MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....
My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
Report This| Share this:I need some advice....<b>Hello and welcome....MiMi in NC....sorry that you are dealing with so much right now...I do know that FM is a very mean and ugly illness....and very unpredictable about what may or may not happen from day to day and sometimes, it might even be every hour or so....</b><br /><b></b> <br /><b>I do not think that FM causes swelling....I know that at one point and time my hands felt like they were swollen but I have nothing showing which indicated that they were...(I have had carpal tunnel surgery several times on both hands and still have weakness in them)...</b><br /><b></b> <br /><b>I do know that I have also had problems with balancing...I have actually fallen twice outside and broke each wrist one time....and being confused is also part of FM....I can definitely relate to this...it seems like sometimes that my mind and my body do not even belong to each other....sounds odd I know...but so very true...I do not understand this nor do I even worry about it any longer...</b><br /><b></b> <br /><b>A lot of us FMers have had multiple health issues also...so perhaps you have something else going on...it would probably be a good idea to get another doctor's opinion...I do know that when I first got sick I had several health issues going on but my doctor thought that I was just depressed...(NOT)...and only when we got to the root of each issue did I finally got to the point of getting better...</b><br /><b></b> <br /><b>I also have chronic fatigue and the doctor has told me that there is nothing that will help this....I continue though to try to find something that might work on this...</b><br /><b></b> <br /><b>I would encourage you to be sure and ask your doctor to check your Vitamin D level...and probably your Vitamin B's as well....low Vitamin D is common in a lot of people these days and it can also affect additional pain for some of us and affect other illnesses as well...this is a simple blood test...but you MUST ASK the doctor to do it...as it is not included in the normal bloodwork that the doctors do...</b><br /><b></b> <br /><b>I am sure that you will find lots of good tools and tips here that might help you cope better....and please know that we know and understand just how you feel...so hang in here with us...</b><br /><b></b> <br /><b>Learning how to pace, pace and pace even more is so important...this is so hard for a lot of people to do...but once you figure out how to do it...it makes things so much easier for you...</b><br /><b></b> <br /><b>Take care and good luck...</b><br /><b></b> <br /><b></b> <br /><b>MiMi </b>
forgetful88 responded:
IMHO, it sounds like you have something else going on & you need a second opinion.
You need to get in with a good neurologist.
You need to get in with a good neurologist.
Report This| Share this:I need some advice....IMHO, it sounds like you have something else going on & you need a second opinion. <br /> <br />You need to get in with a good neurologist.
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