Hello all
I hope everyone is doing good,

I just had one of the worse flairs yet,
The last 2 weeks have been off and on with new symptoms falling more, horse voice, weak belly, do not want to eat, I fall in my shower and have a black eye now, and my knees are bused from falling,
when I hit my eye in the shower, my face hurts,
the night before last was a very bad night, I was sweating more then every
had to change my sheets and PJ'S not easy when you are full body and was in a flair as all of you know, so I just toss the sheets over my bed,
so that hole next day I could not get up, felt bad all over, ya maybe the flu
but no temp or anything that would make me think it was the flu,
I at least try and get up and do what I can, but not that day
ok now comes last night, my 2 cuz came over, we all where sitting here,
and I kept have a numbing and tingleing feeling, go from my hands to feet to legs, I said something to both of them that was odd and never had that happen before, so I just block it till it was time for them to leave, I got up to walk them out, and I took 2 steps, and the numbing tingleing ran up my legs
not just little tingling, but very intense, then to my arms then hands, I had a book in my one hand my fingers lock open and I drop every thing, then
I felt ICE COLD RUN thought my vain and in my legs then arms and hands,
(I never had that before, but the burning feeling runny thought them)
then my hands both spasm and closed, oh as soon as the ice cold ran though me, my legs gave out, and down I went, one of my cuz she was right there and made my landing easy, as I was sitting there my legs turn ice cold and I could not feel them at all, and both hands, I could not open
I had no pain in my head, stayed crumb as I could to think of what to do next, and no numbing in my face or head, so I new it was not a stork,
at least hoping, I knew I could not get up set, it would just make things worse, and scare everyone,
so my cuz called 911 they came and got me took me in and 8 hrs later
was told just what I thought, just a bad and new flair,
has this happy to anyone ?
I told the ER Dr's that at least I know now, if that happens again I know its not anything besides a bad flair, and that I can ride it out, ya I know, I got a funny look from him also, he said no, if it gets to bad, to come back in,
oh and on my way there, they tried to get a BP on my so so good leg, and no reading, they could not get one, what is that all about?
by the time we got the the ER I could feel my so so good leg but no feeling but ice cold in my outer bad leg, and after hrs later, the burning started, and the numbing stop and the feeling came back,
what is going on! ???????
I felt so bad for my cuz to see that, I did not know but they fallowed me there, it was about an 45 min ride to a good trauma one ER,
the little town I live in the ER is bad, no one goes there,
I have to give credit to the EMTs they where so nice and said they are going to find out what they can about RSD, I am on there rout so they should know, they did everything they could not to hurt me, and not knowing what RSD is, I have to say they did great,
my mom and dad came down, they ask the Dr why my foot is the way it is,
swollen and reddish and blotchy the ER Dr told them that is all from the RSD
but they never seen full body, they did not push to run a IV when I said that
I really did not want to change getting one if I did not need it so they did not push for it, witch was nice to have someone linsin to me,
I could of stayed there all night, but felt it was just better for me to be back in my own home, as there was not much they could do for me,

so was that really just a flair up? has this happen to anyone else?
I am still shaken up about it,

thank you for taking the time to read this,
Peace

[ali12]

I am SO sorry you are going through all of this and hope you start feeling better and get some much-needed answers real soon!!

I have had most of the symptoms that you describe. My legs give out a lot and I end up falling backwards and onto the floor which is very scary and embarrassing - it's sort of like I have no co-ordination over my legs at all and is a VERY scary feeling!! I've also had the ice running through my veins feeling and it was really strange as it felt like when I have had IV's and the medicine is really cold!!!

My Blood Pressure is often affected by the RSD. We tend to find that if I am in a lot of pain, my BP is way too high and I feel really dizzy but if i'm not in a lot of pain, my BP goes down to a more manageable level.

I've spoken to my Doctor about these symptoms before and he said it was from the RSD and that there wasn't anything he could do really. I felt VERY angry when he said that, like you and thought that he had to do something but I have sort of learnt to deal with it now and just accept it. I still get really scared by it and am often really close to going to the ER and me falling as caused all sorts of injuries, including a spread of the RSD to my arm.

My PM Doctor told me that the only thing he could really do for me was to give me muscle relaxants and Physical Therapy. I have come off all of my meds now as they weren't helping at all and were contributing to some of my problems but I still have weekly PT at my local Children's Hospital and do regular exercises at home on a daily basis. A lot of the exercises I do are to try and strengthen my muslces and I have to wear 2lb weights on each of my ankles and move my legs up and down - that hurts a LOT but I do feel it has helped me somewhat.

I hope you start feeling better soon and please keep us all updated when you can! I'm sorry that I can't help you that much but just wanted to let you know that you aren't alone!!

[MominPainRSD]

Kelly,
I have NEVER experienced what you have, but it sounds so awful and terrifying. I am so very sorry you are going through this....that you've had to endure so much pain and fear. Do not feel embarrassed or guilty about this having happened in front of your cousin. They love you, and I'm sure were very glad that they WERE there so that they could get you proper treatment.

We should all remember that RSD is NOT our fault. We did not ask for this, we did not do anything to deserve this, it is indiscriminate in who in affects and when. We should never feel guilty about needing help or being in pain. We have enough to worry about just trying to live our lives. Be happy that your family cares so much about you, that the EMT's were sensitive to you, that your doctor understands enough to KNOW that you need help when/if this ever happens again (which I pray it doesn't).

I hope that they've given you appropriate care and meds to tolerate this nasty flair as well as you can. Be kind to yourself and know that we care about you.

Thank you Ali
How are you doing? I have seen you on here, and outer message boards

I kind of knew it had to be from the RSD after getting there, and talking with the Dr, but had to be sure,
I hate going to the ER for anything, but I was not sure if anyone else had that happen to them also
SO talk about WOW
and as soon as the ER Dr told me the same thing I knew there is not much they can do for me, just something new going on, at least I know the warning sings if that happens again, I hope I have a warning next time, or NEVER HAVE THAT HAPPEN AGAIN!


thank you
Peace

[ali12]

Originally Posted by kelly6449ed

Thank you Ali
How are you doing? I have seen you on here, and outer message boards

I kind of knew it had to be from the RSD after getting there, and talking with the Dr, but had to be sure,
I hate going to the ER for anything, but I was not sure if anyone else had that happen to them also
SO talk about WOW
and as soon as the ER Dr told me the same thing I knew there is not much they can do for me, just something new going on, at least I know the warning sings if that happens again, I hope I have a warning next time, or NEVER HAVE THAT HAPPEN AGAIN!


thank you
Peace

Hi Kelly,

Thank you for your kind words - I really appreciate it!

I'm sorry that you had to deal with all of that and really hope you start feeling better real soon! I hate going to the ER also - i'll only go when I absolutely have to so my mum and doctor can always tell when I am having a real bad day and can't take much more pain!!

It must have been really scary when all of that happened, not only for you but for your cousions as well but as MomInPain said, they love you and i'm sure they are glad that they were there to be able to help you and call 911!

Thanks for asking how i'm doing! I haven't been doing well recently. The weathers horrible over here in the UK so I don't think that has been helping as it's made my pain worse. I found out on Monday that I have to go back onto the Intense Physical Therapy Program on the 27th April for 2 weeks so hopefully that should help me once and for all, if not, i'm not sure what we will do!! I was supposed to be going onto the program now but my grandad passed away at the end of Novemeber and I just didn't feel up to going so we had to re-schedule.

I'm thinking about you and if you ever need someone to talk to, I am here for you!

Thanks again!

[loretta]

Hi Kelly,

I am so sorry you had that bad flare. I know it was scary and thankfully your cousins were there! I also have full body-12 years now. About 5 years ago I woke up and felt strange, stumbling to the bathroom, running into the door and wall. So sooner than got in there and passed out, knew I was passing out but couldn't do anything about it. My husband was home in his office upstairs. When I woke up, I couldn't get up so just crawled on my stomach to the door and beat my hand on the door as loud as I could and called for him. He had heard me get up. I asked him to call 911, had to ask him 4-5 times, he was in shock. I passed out again. The Emt's couldn't get a pulse and told my husband he thought I was dead. I had lost my bladder and colon. They finally got a pulse somewhere else. BP was 60/40 I was unconscience for at least a hour or more. They gave me oxygen and pretty much don't remember anything until in ER. The nurse had a relative with RSD, which was nice and spent 4 days in ICU lots of tests. One of my Drs. was experienced with RSD.

I only take showers or a bath when my husband or daughter arehome. My Dr. has said not to get the water too warm- it weakens me and makes me feel light headed. I was my hair separately with a pull out shower-sprayer as he said it's important not to keep your head down too long. That lowers your blood pressure and can cause you to pass out. RSD is an automic disorder, which means it affects internal organs that are involuntary, like your heart rate, circulation, blood pressure, I have swollowening difficulties at times and voice changes. The sympathetic nervous system is the fight or flight response. So we have high blood pressure, burning spells, sweating, and then the para-sympathetic nervous system tries to balance us out and goes the opposite, low blood pressure, ice cold spells to the bone. I'm on two different blood pressure meds. Only have a low bp about once every couple months. You can get a bp kit at costco or wallmart for about $20.

There is a medical alert that you can put around your neck for the shower, and it goes directly to the ambulance service- Maybe you could call an ambulance service and ask about it or aarp ( I'm sure you are not that age( smiling) If you can't afford the monthly cost, maybe there is an agency that will cover it for you. Those emt's sound so nice, they might know where to start. Also I'm going to get a plastic stool for my shower to sit on, as a shower is very tiring for me. I think wall-mart has them. I always take a portable phone with me in the bathroom now. That kind of trauma, doesn't easily go away. I cracked my head on the tile. I hope your face is Ok. Look for lumps under your skin, they are tender and don't go away, but aren't really visible to others.

The flu or a cold can send you into a flare. They really knock you down. Even before that spell, and that's the only one I've had, I had spasms, electric jolts thru my brain, shocks, had my left hand locked upon. Got part use back thru therapy. Both shoulders have been completely froze up and got them unlock thru massage therapy and pt. About a 100 treatments each for the initial limb, following surgery. Have had toes start to curl and Dr. gave me exercises to do and they completely touch the floor again. So PLEASE, even a little exercise helps. I have 1lb. weights. and sqeezie balls, for strengthening hands. I have full use of both arms and full use of right hand and about 1/2 use of left hand, but can type, cut my food, peel potatoes, etc. If you have a bath tub, it's a could place to so some stretching exercising in warm water, not too hot.

My Dr. a neurologist, psychiatrist, pharmacologist, gradually put me on neurotin 3200 mg and all spasms, jolts, jerks, dailey and nightly all stopped. This is my first week off the med. and no symptoms. I gained a lot of weight and that was so depressing. Of course, I'll go back on if I start getting the dailey spasms, etc. back. Please take care, and pm if you have any questions. Flares are bad, and especially if you live alone. With you falling, do you feel comfortable having someone check in on you by phone? at least till this flare passes. We all care about you and hope it passes soon. Your fellow RSD friend,Loretta Jewell

[loretta]

Hi Kelly,

I am so sorry you had that bad flare. I know it was scary and thankfully your cousins were there! I also have full body-12 years now. About 5 years ago I woke up and felt strange, stumbling to the bathroom, running into the door and wall. So sooner than got in there and passed out, knew I was passing out but couldn't do anything about it. My husband was home in his office upstairs. When I woke up, I couldn't get up so just crawled on my stomach to the door and beat my hand on the door as loud as I could and called for him. He had heard me get up. I asked him to call 911, had to ask him 4-5 times, he was in shock. I passed out again. The Emt's couldn't get a pulse and told my husband he thought I was dead. I had lost my bladder and colon. They finally got a pulse somewhere else. BP was 60/40 I was unconscience for at least a hour or more. They gave me oxygen and pretty much don't remember anything until in ER. The nurse had a relative with RSD, which was nice and spent 4 days in ICU lots of tests. One of my Drs. was experienced with RSD.

I only take showers or a bath when my husband or daughter arehome. My Dr. has said not to get the water too warm- it weakens me and makes me feel light headed. I was my hair separately with a pull out shower-sprayer as he said it's important not to keep your head down too long. That lowers your blood pressure and can cause you to pass out. RSD is an automic disorder, which means it affects internal organs that are involuntary, like your heart rate, circulation, blood pressure, I have swollowening difficulties at times and voice changes. The sympathetic nervous system is the fight or flight response. So we have high blood pressure, burning spells, sweating, and then the para-sympathetic nervous system tries to balance us out and goes the opposite, low blood pressure, ice cold spells to the bone. I'm on two different blood pressure meds. Only have a low bp about once every couple months. You can get a bp kit at costco or wallmart for about $20.

There is a medical alert that you can put around your neck for the shower, and it goes directly to the ambulance service- Maybe you could call an ambulance service and ask about it or aarp ( I'm sure you are not that age( smiling) If you can't afford the monthly cost, maybe there is an agency that will cover it for you. Those emt's sound so nice, they might know where to start. Also I'm going to get a plastic stool for my shower to sit on, as a shower is very tiring for me. I think wall-mart has them. I always take a portable phone with me in the bathroom now. That kind of trauma, doesn't easily go away. I cracked my head on the tile. I hope your face is Ok. Look for lumps under your skin, they are tender and don't go away, but aren't really visible to others.

The flu or a cold can send you into a flare. They really knock you down. Even before that spell, and that's the only one I've had, I had spasms, electric jolts thru my brain, shocks, had my left hand locked upon. Got part use back thru therapy. Both shoulders have been completely froze up and got them unlock thru massage therapy and pt. About a 100 treatments each for the initial limb, following surgery. Have had toes start to curl and Dr. gave me exercises to do and they completely touch the floor again. So PLEASE, even a little exercise helps. I have 1lb. weights. and sqeezie balls, for strengthening hands. I have full use of both arms and full use of right hand and about 1/2 use of left hand, but can type, cut my food, peel potatoes, etc. If you have a bath tub, it's a could place to so some stretching exercising in warm water, not too hot.

My Dr. a neurologist, psychiatrist, pharmacologist, gradually put me on neurotin 3200 mg and all spasms, jolts, jerks, dailey and nightly all stopped. This is my first week off the med. and no symptoms. I gained a lot of weight and that was so depressing. Of course, I'll go back on if I start getting the dailey spasms, etc. back. Please take care, and pm if you have any questions. Flares are bad, and especially if you live alone. With you falling, do you feel comfortable having someone check in on you by phone? at least till this flare passes. We all care about you and hope it passes soon. Your fellow RSD friend,Loretta Jewell

Hello Ali
I am so sorry about your gramdpa passing, I was close to my grandma, and she pass when I was out of Mi, on a job in Ct, that was hard,
sorry to hear you are not doing so well, and I understand about the weather
its cold here also, so I stay on a heated bed not to hot, just to keep my body temp right, then I get to hot and have to get out of it! fast,,, that happens everyday off and on all the time,,,drives me nuts but I know its the RSD
I hope you start feeling better soon, I know you are so young and I am amazed how you deal with this, I really do not like to hear that kids get this,
but no one is safe from it, I know of one more young girl that got this at 13 and she is now 26 going for her 2 time for the K-coma treatment in Mex this time I guess no one is going to Germany right now, due to that lady that is over there that got Mersa on day 2 of being in a coma and they are tiring to get her back to the US to treat her for that, she is really doing bad, and its very sad she is on the net, and she can no longer move her legs and arms and is on a vent, very scary stuff!
but no kids should go thought this, or anyone,
take care Ali,

Hello Loretta
thank you,
wow I am so sorry to hear you have this also, and for so long,,
yes I have brinks and I also keep my cell on me and land line and my panic button on me at all times, I sleep with them and take them in the bathroom with me, I know this is not a game, anything can happen and when it dose
well you have no time to think about what you are going to do,
yes I was very lucky my cuzs where here, it was funny they said they where going to stop next week but I got a call about 8pm and they where in my drive way, so that was very nice,
my RSD is full body also, never knew till it got there, so I am kind of a newbie to this, I now have a hospital bed and a scooter, my Dr's are doing everything they can, we are limited due to fighting auto ins co, but we are getting close to that being over and as soon as that is done I am hoping to get in to a treatment hospital asap! and I do live alone, I am down for 23 hrs a day,, and that is from having 2 hrs a day of help, and I do not walk very good, my BP was 170 over 60, witch is odd for me, I was at 80 over
60 to 70 most of the time, low, bp,
my toes are curled also, here is a link to my new pics of knee and my black eye, feet and arm, http://flickr.com/photos/rsdcrps/show/
I knew when I moved in here that I was going to need a plan so I did every thing I could think of, to do that, and there is a lady that lives next door that helps out a lot and calls all the time, we have a sign, when I am up, I turn off my porch light and she knows I am up, and if that light is not off my noon she calls or comes over, she just stay here when I am in the shower,
got very lucky to move next door to someone that helps so much,
smiles

hello MominPainRSD
thank you, and you are right, my cuz did not mind helping out,
they just do not get out here that much and to have that happen with them both here was a shock for them to see, and I am very grateful that they where both here, they where here to help me with catechism, they both teach it to kids, ya I know I am kind of old for that, but my family has all done it but me, so its my turn,

thank you for your reply's
Peace

[MominPainRSD]

Kelly,
Thank you so much for sharing your story and your pictures with us. I think it helps many other people who have experienced these symptoms feel comfort that they are not the only ones (and compassion for you from their hearts), and those of us who have not experienced this feel educated and better prepared SHOULD it happen to us in the future. You are a brave woman and I truly appreciate your input and honesty. God bless you always!!

[JFYMAT]

Originally Posted by ali12

I am SO sorry you are going through all of this and hope you start feeling better and get some much-needed answers real soon!!

I have had most of the symptoms that you describe. My legs give out a lot and I end up falling backwards and onto the floor which is very scary and embarrassing - it's sort of like I have no co-ordination over my legs at all and is a VERY scary feeling!! I've also had the ice running through my veins feeling and it was really strange as it felt like when I have had IV's and the medicine is really cold!!!

My Blood Pressure is often affected by the RSD. We tend to find that if I am in a lot of pain, my BP is way too high and I feel really dizzy but if i'm not in a lot of pain, my BP goes down to a more manageable level.

I've spoken to my Doctor about these symptoms before and he said it was from the RSD and that there wasn't anything he could do really. I felt VERY angry when he said that, like you and thought that he had to do something but I have sort of learnt to deal with it now and just accept it. I still get really scared by it and am often really close to going to the ER and me falling as caused all sorts of injuries, including a spread of the RSD to my arm.

My PM Doctor told me that the only thing he could really do for me was to give me muscle relaxants and Physical Therapy. I have come off all of my meds now as they weren't helping at all and were contributing to some of my problems but I still have weekly PT at my local Children's Hospital and do regular exercises at home on a daily basis. A lot of the exercises I do are to try and strengthen my muslces and I have to wear 2lb weights on each of my ankles and move my legs up and down - that hurts a LOT but I do feel it has helped me somewhat.

I hope you start feeling better soon and please keep us all updated when you can! I'm sorry that I can't help you that much but just wanted to let you know that you aren't alone!!

I THINK YOU ARE VERY BRAVE GIRL. I pray life gets better for you. I thought my life was tough. You are good and kind .