chilyrabit
02-11-2009, 07:25 PM
Hi! I'm Kim. I'm a 37 yr old wife and mom. I live in W PA. I found this site over this past weekend when I had a health issue that I needed info on. I’ve been reading many of the threads and responses; trying to get a feel for the people from the site! I am very glad that I found this site..only wish I would have found it sooner!!
I was diagnosed with FMS 3 years ago after suffering for 12 years and being told I was crazy and I’m sure you all know how those stories go LOL. I also have migraines, shingles, vertigo (rarely), bulging discs in neck and only 1 kidney.
Recently, my neurologist had to take me off of one of my meds because it was causing kidney stones and w/ the 1 kidney…not good. Unfortunately, it just so happened that that pill was part of a nice little “cocktail” of meds that I took/take daily that had me feeling better than I have felt for years. I was still in pain, but it was manageable. It was livable. I was mostly happy, more good days than bad, didn’t look miserable all of the time, etc…
So, now I feel like I am back to square 1. The dr. put me on something else, and it is working a little bit but I am hallucinating, having horrid dreams. I also have been twitching a lot more than before. I shake a lot more than before. So, I go to dr. on Mon. to see what he says. It is so depressing to make progress and then have the ladder kicked out from under you. I wasn’t missing any work. I was going to take a class at the community college at night. Now, I’m back to missing work, etc…
I’ve had 4 things happen to me, 2 happen all the time and 2 have only happened once. I am curious if anyone else has experienced any of this? I have a sensation like pain in the skin of my arms and hands. Does anybody else experience that? I don't like to have my skin touched by anyone including me. I also have times when I lose consciousness for just a few seconds at a time. I can be doing anything, including driving when this happens. It is very scary. My neurologist thinks it is related to my migraines. Then, this past Sunday, my legs turned to rubber and I fell down. There was absolutely nothing I could do but try to use my hands to brace myself. Does anyone know what causes that? That was truly a horrible feeling. I hope it never happens again. I had one other really strange thing happen to me. One day, I lost both my vision and my hearing for about 3 minutes. I could still talk and function in all other ways. My husband took me and sat me down. When I could hear and see again, I was completely freaked out. Again, the doctor said it is related to the migraines.
I, like many of you am having a very rough time right now. This winter has not been good for me. I hate the cold and don't want to go out unless I absolutely have to. I think the pain is actually painful. Once you get too cold…you’re “toast”. Bad analogy, I know.
Does anyone else ever wonder or try to remember what it was like before the pain started? Can anyone remember? It is so sad, I can’t remember being a normal person. How do you forget yourself like that? Well, thanks for “listening”. Up until now, I really didn’t have anyone who understands to “talk” to. I think this site will be very beneficial.
I was diagnosed with FMS 3 years ago after suffering for 12 years and being told I was crazy and I’m sure you all know how those stories go LOL. I also have migraines, shingles, vertigo (rarely), bulging discs in neck and only 1 kidney.
Recently, my neurologist had to take me off of one of my meds because it was causing kidney stones and w/ the 1 kidney…not good. Unfortunately, it just so happened that that pill was part of a nice little “cocktail” of meds that I took/take daily that had me feeling better than I have felt for years. I was still in pain, but it was manageable. It was livable. I was mostly happy, more good days than bad, didn’t look miserable all of the time, etc…
So, now I feel like I am back to square 1. The dr. put me on something else, and it is working a little bit but I am hallucinating, having horrid dreams. I also have been twitching a lot more than before. I shake a lot more than before. So, I go to dr. on Mon. to see what he says. It is so depressing to make progress and then have the ladder kicked out from under you. I wasn’t missing any work. I was going to take a class at the community college at night. Now, I’m back to missing work, etc…
I’ve had 4 things happen to me, 2 happen all the time and 2 have only happened once. I am curious if anyone else has experienced any of this? I have a sensation like pain in the skin of my arms and hands. Does anybody else experience that? I don't like to have my skin touched by anyone including me. I also have times when I lose consciousness for just a few seconds at a time. I can be doing anything, including driving when this happens. It is very scary. My neurologist thinks it is related to my migraines. Then, this past Sunday, my legs turned to rubber and I fell down. There was absolutely nothing I could do but try to use my hands to brace myself. Does anyone know what causes that? That was truly a horrible feeling. I hope it never happens again. I had one other really strange thing happen to me. One day, I lost both my vision and my hearing for about 3 minutes. I could still talk and function in all other ways. My husband took me and sat me down. When I could hear and see again, I was completely freaked out. Again, the doctor said it is related to the migraines.
I, like many of you am having a very rough time right now. This winter has not been good for me. I hate the cold and don't want to go out unless I absolutely have to. I think the pain is actually painful. Once you get too cold…you’re “toast”. Bad analogy, I know.
Does anyone else ever wonder or try to remember what it was like before the pain started? Can anyone remember? It is so sad, I can’t remember being a normal person. How do you forget yourself like that? Well, thanks for “listening”. Up until now, I really didn’t have anyone who understands to “talk” to. I think this site will be very beneficial.
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sandradee0303
02-11-2009, 09:00 PM
Hi, sorry that you are not feeling so good right now. I just wanted to respond to your "remember your self comment". I do remember, I was a fun, vivacious, energetic, never stop kind of girl. Now I am a very old lady at the age of 41.
Hope your tomorrow is better than your today.
Sandra Dee
Hope your tomorrow is better than your today.
Sandra Dee
chilyrabit
02-11-2009, 09:09 PM
Hi Sandra,
Thanks for the response. Actually, I remember that I was energetic and fun. My husband and I were just talking about it the other day. He is having trouble dealing with the fact that I don't/can't go like I used to. He said that I used to never stop. He is right. I guess what I mean is that I can't imagine myself free of pain. I guess it is hard to explain. Anyway, have a Happy Thursday
Kim
Thanks for the response. Actually, I remember that I was energetic and fun. My husband and I were just talking about it the other day. He is having trouble dealing with the fact that I don't/can't go like I used to. He said that I used to never stop. He is right. I guess what I mean is that I can't imagine myself free of pain. I guess it is hard to explain. Anyway, have a Happy Thursday
Kim
JacquelineH
02-12-2009, 12:41 AM
This board is great. I hate complaining to my husband all the time. It is nice to be able to talk to someone with the same problems. I was running heavy equipment for 4 years before my condition got too bad. I had a fall and broke my tail bone and everything went down hill from there. Now I am lucky to do dishes or tidy up the house. I miss what I was doing, I use to work along with my husband.
I some times have pains when someone just touches me. The numbness is always there. And I to have got the rubber legs. Now it the time for hot flashes. Ikes! Hope spring comes real soon, I know where you are comming from. Take care.
I some times have pains when someone just touches me. The numbness is always there. And I to have got the rubber legs. Now it the time for hot flashes. Ikes! Hope spring comes real soon, I know where you are comming from. Take care.
sandradee0303
02-12-2009, 07:08 AM
Rubber legs was one of my first signs 10 years ago. I haven't worn any type of heel since. Only flats, and then I still fall.
Kim, when you say you can't imagine you without pain, do you mean in the future? Please explain, are you feeling depressed? If so, it is totally natural to grieve your original self.
Sandra Dee
Kim, when you say you can't imagine you without pain, do you mean in the future? Please explain, are you feeling depressed? If so, it is totally natural to grieve your original self.
Sandra Dee
bluelakelady
02-12-2009, 10:29 AM
hi rabit,
looking back is something i never found fun so i still don't do it. i am who i am, a person with a rich history of joyful memories and a lovely future to anticipate with eyes wide open.
the flesh pain is an aspect that comes and goes. sometimes i crank up the heat, put on a summer dress and just enjoy the no pain of no clothing. as for rubber legs and falling. yes i remember it well. the rubbery feeling faded over a few years. other health stuff has altered my ability to balance.
learn to fall. it is the best advise i can offer. i did. i went back to my tumbling experience as a youth. relax, tuck and roll. and laugh. especially if there is anyone who saw you. laughter uplifts and saves ones sanity and vanity. giggle.
peace,
bluelakelady
looking back is something i never found fun so i still don't do it. i am who i am, a person with a rich history of joyful memories and a lovely future to anticipate with eyes wide open.
the flesh pain is an aspect that comes and goes. sometimes i crank up the heat, put on a summer dress and just enjoy the no pain of no clothing. as for rubber legs and falling. yes i remember it well. the rubbery feeling faded over a few years. other health stuff has altered my ability to balance.
learn to fall. it is the best advise i can offer. i did. i went back to my tumbling experience as a youth. relax, tuck and roll. and laugh. especially if there is anyone who saw you. laughter uplifts and saves ones sanity and vanity. giggle.
peace,
bluelakelady
chilyrabit
02-12-2009, 12:20 PM
hi everyone,
thanks for the responses. just being able to talk a little bit about what is going on with me is helpful. i agree with you bluelakelady, at least in my heart, about the memories etc... i also agree that attitude has alot to do with how I deal with what I've been dealt. i guess right now i just feel like i had made so much progress and was doing so well. then, someone came and pulled the rug out from under me. i feel like i am staring from the beginning. of course i know i am not but it just feels that way.
someone asked me to explain about not being able to imagine myself w/o pain. no, i mean the past. but then that is really just wishing to not have any pain, i know. i am probably the most depressed i ever have been but i will work through it, i have to
i realize that my day will come when i can no longer work and it kills me to work now ( i work and then come home and sleep) but i want to push thru till i just can't do it anymore. i don't want to think of myself as an old lady when i'm 41.
well, again, thanks for listening. hopefully my doc appt will be helpful on monday.
thanks for the responses. just being able to talk a little bit about what is going on with me is helpful. i agree with you bluelakelady, at least in my heart, about the memories etc... i also agree that attitude has alot to do with how I deal with what I've been dealt. i guess right now i just feel like i had made so much progress and was doing so well. then, someone came and pulled the rug out from under me. i feel like i am staring from the beginning. of course i know i am not but it just feels that way.
someone asked me to explain about not being able to imagine myself w/o pain. no, i mean the past. but then that is really just wishing to not have any pain, i know. i am probably the most depressed i ever have been but i will work through it, i have to
i realize that my day will come when i can no longer work and it kills me to work now ( i work and then come home and sleep) but i want to push thru till i just can't do it anymore. i don't want to think of myself as an old lady when i'm 41.
well, again, thanks for listening. hopefully my doc appt will be helpful on monday.
Glojer
02-12-2009, 01:11 PM
chily, welcome to the boards, yes I have the very tender skin. Don't like anyone touching me too hard. I have had it for years, have always said my skin hurts. I have experienced a little of what you say being unconscious for a few seconds. I think the key is a Few Seconds. I have never worried about it, cause it is such a brief time but I have also suffered from horrible migraines.
I know it is a bummer when things seem to be going along so well and the rug gets pulled out from under you, I am 60yrs. old and have experienced it more times than I care to count. The trick is to not let it throw you, don't let it win, always fight the good fight. At least that's my philosophy. Oh, and NO I don't remember how it felt to be normal. It is strange how that seems to happen after all the years of feeling like this. I use to think I was normal but I soon figured out others didn't feel the same as me.
Glojer
I know it is a bummer when things seem to be going along so well and the rug gets pulled out from under you, I am 60yrs. old and have experienced it more times than I care to count. The trick is to not let it throw you, don't let it win, always fight the good fight. At least that's my philosophy. Oh, and NO I don't remember how it felt to be normal. It is strange how that seems to happen after all the years of feeling like this. I use to think I was normal but I soon figured out others didn't feel the same as me.
Glojer
starflyer
02-15-2009, 12:34 PM
hi everyone,
thanks for the responses. just being able to talk a little bit about what is going on with me is helpful. i agree with you bluelakelady, at least in my heart, about the memories etc... i also agree that attitude has alot to do with how I deal with what I've been dealt. i guess right now i just feel like i had made so much progress and was doing so well. then, someone came and pulled the rug out from under me. i feel like i am staring from the beginning. of course i know i am not but it just feels that way.
someone asked me to explain about not being able to imagine myself w/o pain. no, i mean the past. but then that is really just wishing to not have any pain, i know. i am probably the most depressed i ever have been but i will work through it, i have to
i realize that my day will come when i can no longer work and it kills me to work now ( i work and then come home and sleep) but i want to push thru till i just can't do it anymore. i don't want to think of myself as an old lady when i'm 41.
well, again, thanks for listening. hopefully my doc appt will be helpful on monday.
Keep hanging in there. I don't think I can ever recall not being in pain. I'm 54 and I can't work anymore. I know that it isn't easy to not be able to work, you just have to grin a bear it the best you can. I think it does help just to be able to vent sometimes. Don't ever think of yourself as old!!!!!!!!!!!1
thanks for the responses. just being able to talk a little bit about what is going on with me is helpful. i agree with you bluelakelady, at least in my heart, about the memories etc... i also agree that attitude has alot to do with how I deal with what I've been dealt. i guess right now i just feel like i had made so much progress and was doing so well. then, someone came and pulled the rug out from under me. i feel like i am staring from the beginning. of course i know i am not but it just feels that way.
someone asked me to explain about not being able to imagine myself w/o pain. no, i mean the past. but then that is really just wishing to not have any pain, i know. i am probably the most depressed i ever have been but i will work through it, i have to
i realize that my day will come when i can no longer work and it kills me to work now ( i work and then come home and sleep) but i want to push thru till i just can't do it anymore. i don't want to think of myself as an old lady when i'm 41.
well, again, thanks for listening. hopefully my doc appt will be helpful on monday.
Keep hanging in there. I don't think I can ever recall not being in pain. I'm 54 and I can't work anymore. I know that it isn't easy to not be able to work, you just have to grin a bear it the best you can. I think it does help just to be able to vent sometimes. Don't ever think of yourself as old!!!!!!!!!!!1