Re: I'm new here and I need help

[Guest guest]

Hello Jim

My name is Kenny, I live in Mesa, AZ.,and let me be one of the first to welcome you to this group. There is a lot of great people here. I am no doctor, but I must say you should the next time you see your doc, maybe bring up the idea of RSD. One of the web sites I found for information was, www.rsdhope.org , I learned a lot there. pkease keep letting us know how you are doing, we care here, plus it will be nice to have another guy around here, LOL, you can feel free to e-mail me direct at naclean10@... .

With Luv,and Prays

Kenny

I'm new here and I need help

Hi everyone,I am male, 45 years old, single, I have three wonderful children, I play guitar and write music, and I live in one of the world's gemstones, the Yukon, Canada. My life's physical journey over the past eight years has been very difficult. Three months ago, a good friend of mine was reading a magazine article about a woman successfully losing weight after a long phase of gaining weight because she was going through learning, at times unsuccessfully, how to deal with something she had called RSDS.... "I have constant burning pain in my legs and spine as well as varying numbnesses in my feet and hands... etc."My friend couldn't wait to call me. "Jim, I read this article and the woman in it sounded exactly like you!"And yes, those are all words I've used. My physical situation includes: -constant numbness of both my legs from the knees through to the toes, -intense burning pain in my legs, -a weird brownish red rash on the backs of my legs that is, sometimes, extremely itchy, -fire in my spine from the shoulders to the tailbone, -numbness in the right half of my head especially around my ear and eye, -sporadic drooping of my right eye, -dizziness that is constantly present in a mild form and often shifts to intense levels,-more recently,as in the past six months, numbness and burning and pain in both my hands especially the fingers.-in the morning, the bottom of my feet are quite swollen such that, when I stand up, (always a painful process) my toes don't make contact with the floor for about twenty minutes. Oh ya, and tons and tons of weariness.All of this has developed over the past eight years. It has been, and is, very difficult. I have had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and lots of blood tests. I've seen my neurologist three or four times, spent nine hours with a rheumatologist, and several visits to a back surgeon ( I have a 'seriously compromised L5-S1 disc).I used to do physio therapy but it was always making my pains worse. Walking is my favorite exercise but it has become difficult over the past year because it makes my leg and feet numbness go to almost unbearable levels of intensity.The meds my doctors have me on are divalproex, difenac and diluadid.Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now read quite a bit, and sheesh! I sure find that lots of it fits.So, while I still don't have a diagnosis, could it be that the doctors I've seen just haven't put it all together? Or are there lots of doctors that don't even know about RSD-CRPS? Can it take years to figure out?Any thoughts on what I've told you would sure be appreciated. Somedays, I think I'm going absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis, but I also want to go into my next appointment with my doctor with as much good information as possible.thank you in advance. I already feel far less alone.yours truly,Jim

[Guest guest]

Jim,

Welcome to our family. I'm sure you will find everyone here to be incredibly helpful and supportive.

Yes, it does sound like RSD (CRPS) and I agree with Barbara's idea that you try and have your physician find you someone trained in pain management. It is obvious you have gone without appropriate treatment for quite long enough.

Does your health system in Canada alter the treatment you are able to get?

Hugs,

Jo

[Guest guest]

Jim - First of all, welcome to the group. It sounds like you've had a really difficult journey. You might ask your docs if they would refer to a pain management doc (important.....an anesthesiologist who is board certified in pain management) who is familiar with RSD-CRPS. They will review your situation and explore the idea of RSD-CRPS. It may or may not be what you're dealing with (or contributing it in some way) but it's certainly worth exploring. In the meantime, put you're feet up and hang out with us. There's a good group of folks here that are terrific in offering support. Barbarajurzza wrote:

Hi everyone,I am male, 45 years old, single, I have three wonderful children, I play guitar and write music, and I live in one of the world's gemstones, the Yukon, Canada. My life's physical journey over the past eight years has been very difficult. Three months ago, a good friend of mine was reading a magazine article about a woman successfully losing weight after a long phase of gaining weight because she was going through learning, at times unsuccessfully, how to deal with something she had called RSDS.... "I have constant burning pain in my legs and spine as well as varying numbnesses in my feet and hands... etc."My friend couldn't wait to call me. "Jim, I read this article and the woman in it sounded exactly like you!"And yes, those are all words I've used. My physical situation includes: -constant numbness of both

my legs from the knees through to the toes, -intense burning pain in my legs, -a weird brownish red rash on the backs of my legs that is, sometimes, extremely itchy, -fire in my spine from the shoulders to the tailbone, -numbness in the right half of my head especially around my ear and eye, -sporadic drooping of my right eye, -dizziness that is constantly present in a mild form and often shifts to intense levels,-more recently,as in the past six months, numbness and burning and pain in both my hands especially the fingers.-in the morning, the bottom of my feet are quite swollen such that, when I stand up, (always a painful process) my toes don't make contact with the floor for about twenty minutes. Oh ya, and tons and tons of weariness.All of this has developed over the past eight years. It has been, and is, very difficult. I have had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and lots of blood

tests. I've seen my neurologist three or four times, spent nine hours with a rheumatologist, and several visits to a back surgeon ( I have a 'seriously compromised L5-S1 disc).I used to do physio therapy but it was always making my pains worse. Walking is my favorite exercise but it has become difficult over the past year because it makes my leg and feet numbness go to almost unbearable levels of intensity.The meds my doctors have me on are divalproex, difenac and diluadid.Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now read quite a bit, and sheesh! I sure find that lots of it fits.So, while I still don't have a diagnosis, could it be that the doctors I've seen just haven't put it all together? Or are there lots of doctors that don't even know about RSD-CRPS? Can it take years to figure out?Any thoughts on what I've told you would sure be appreciated. Somedays, I think I'm going

absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis, but I also want to go into my next appointment with my doctor with as much good information as possible.thank you in advance. I already feel far less alone.yours truly,Jim

[Guest guest]

Jim,

Welcome to our wonderful group. Sadly, we have to meet under these horrid circumstances. I am sure that you will find that we have all kinds of information for you as well as a solid support group when times are especially hard for you to cope with this monster disease.

This is a wonderful place to talk openly about anything. I know personally I learned a great deal from many in here. It is always a great place to come to when you have questions as at least one person here can relate in some way or another.

Sounds as though you have had it very hard lately and hope that you get the answers you need. I am no expert in RSD as I have only been stricken with it for a short time...but it sure does sound like RSD to me. What I find sad about your situation is that you have been dealing with this for such a long period of time and you haven't been diagnosed with it yet. I would be utterly shocked if it isn't RSD as I experience many of the same symptoms as you and that is what I have. I would assume based on your problems that you are into second or third stage of this disease which is much harder to treat. I was fortunate to be diagnosed and treated in stage 1 and get much relief from the day to day pain with meds and a spinal cord stimulator when it is working properly, which it isn't right now, but will be getting it fixed next Friday.

I welcome you to the group and wish the very best luck in dealing with this debilitating monster.

Teri

-- I'm new here and I need help

Hi everyone,I am male, 45 years old, single, I have three wonderful children, I play guitar and write music, and I live in one of the world's gemstones, the Yukon, Canada. My life's physical journey over the past eight years has been very difficult. Three months ago, a good friend of mine was reading a magazine article about a woman successfully losing weight after a long phase of gaining weight because she was going through learning, at times unsuccessfully, how to deal with something she had called RSDS.... "I have constant burning pain in my legs and spine as well as varying numbnesses in my feet and hands... etc."My friend couldn't wait to call me. "Jim, I read this article and the woman in it sounded exactly like you!"And yes, those are all words I've used. My physical situation includes: -constant numbness of both my legs from the knees through to the toes, -intense burning pain in my legs, -a weird brownish red rash on the backs of my legs that is, sometimes, extremely itchy, -fire in my spine from the shoulders to the tailbone, -numbness in the right half of my head especially around my ear and eye, -sporadic drooping of my right eye, -dizziness that is constantly present in a mild form and often shifts to intense levels,-more recently,as in the past six months, numbness and burning and pain in both my hands especially the fingers.-in the morning, the bottom of my feet are quite swollen such that, when I stand up, (always a painful process) my toes don't make contact with the floor for about twenty minutes. Oh ya, and tons and tons of weariness.All of this has developed over the past eight years. It has been, and is, very difficult. I have had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and lots of blood tests. I've seen my neurologist three or four times, spent nine hours with a rheumatologist, and several visits to a back surgeon ( I have a 'seriously compromised L5-S1 disc).I used to do physio therapy but it was always making my pains worse. Walking is my favorite exercise but it has become difficult over the past year because it makes my leg and feet numbness go to almost unbearable levels of intensity.The meds my doctors have me on are divalproex, difenac and diluadid.Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now read quite a bit, and sheesh! I sure find that lots of it fits.So, while I still don't have a diagnosis, could it be that the doctors I've seen just haven't put it all together? Or are there lots of doctors that don't even know about RSD-CRPS? Can it take years to figure out?Any thoughts on what I've told you would sure be appreciated. Somedays, I think I'm going absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis, but I also want to go into my next appointment with my doctor with as much good information as possible.thank you in advance. I already feel far less alone.yours truly,Jim

[Guest guest]

Welcome Jim-You and i are both new to the group but i can say so far everyone has been great to me. Also to me it sounds like rsd but since you have some disc problems too, it may be hard for them to diagnose. Can i ask if you had an injury, because typically rsd is resulting from an injury. Perhaps you can let us know where you are located and we can help you find a Dr. who is familiar with rsd. A lot of them are not familiar with rsd.....Teri Lehr wrote:

Jim,

Welcome to our wonderful group. Sadly, we have to meet under these horrid circumstances. I am sure that you will find that we have all kinds of information for you as well as a solid support group when times are especially hard for you to cope with this monster disease.

This is a wonderful place to talk openly about anything. I know personally I learned a great deal from many in here. It is always a great place to come to when you have questions as at least one person here can relate in some way or another.

Sounds as though you have had it very hard lately and hope that you get the answers you need. I am no expert in RSD as I have only been stricken with it for a short time...but it sure does sound like RSD to me. What I find sad about your situation is that you have been dealing with this for such a long period of time and you haven't been diagnosed with it yet. I would be utterly shocked if it isn't RSD as I experience many of the same symptoms as you and that is what I have. I would assume based on your problems that you are into second or third stage of this disease which is much harder to treat. I was fortunate to be diagnosed and treated in stage 1 and get much relief from the day to day pain with meds and a spinal cord stimulator when it is working properly, which it isn't right now, but will be getting it fixed next Friday.

I welcome you to the group and wish the very best luck in dealing with this debilitating monster.

Teri

-- I'm new here and I need help

Hi everyone,I am male, 45 years old, single, I have three wonderful children, I play guitar and write music, and I live in one of the world's gemstones, the Yukon, Canada. My life's physical journey over the past eight years has been very difficult. Three months ago, a good friend of mine was reading a magazine article about a woman successfully losing weight after a long phase of gaining weight because she was going through learning, at times unsuccessfully, how to deal with something she had called RSDS.... "I have constant burning pain in my legs and spine as well as varying numbnesses in my feet and hands... etc."My friend couldn't wait to call me. "Jim, I read this article and the woman in it sounded exactly like you!"And yes, those are all words I've used. My physical situation includes: -constant numbness of both my legs from the knees through to the toes, -intense

burning pain in my legs, -a weird brownish red rash on the backs of my legs that is, sometimes, extremely itchy, -fire in my spine from the shoulders to the tailbone, -numbness in the right half of my head especially around my ear and eye, -sporadic drooping of my right eye, -dizziness that is constantly present in a mild form and often shifts to intense levels,-more recently,as in the past six months, numbness and burning and pain in both my hands especially the fingers.-in the morning, the bottom of my feet are quite swollen such that, when I stand up, (always a painful process) my toes don't make contact with the floor for about twenty minutes. Oh ya, and tons and tons of weariness.All of this has developed over the past eight years. It has been, and is, very difficult. I have had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and lots of blood tests. I've seen my neurologist

three or four times, spent nine hours with a rheumatologist, and several visits to a back surgeon ( I have a 'seriously compromised L5-S1 disc).I used to do physio therapy but it was always making my pains worse. Walking is my favorite exercise but it has become difficult over the past year because it makes my leg and feet numbness go to almost unbearable levels of intensity.The meds my doctors have me on are divalproex, difenac and diluadid.Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now read quite a bit, and sheesh! I sure find that lots of it fits.So, while I still don't have a diagnosis, could it be that the doctors I've seen just haven't put it all together? Or are there lots of doctors that don't even know about RSD-CRPS? Can it take years to figure out?Any thoughts on what I've told you would sure be appreciated. Somedays, I think I'm going

absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis, but I also want to go into my next appointment with my doctor with as much good information as possible.thank you in advance. I already feel far less alone.yours truly,Jim

[Guest guest]

Hi everyone,

>

> I am male, 45 years old, single, I have three wonderful children, I

play guitar and write

> music, and I live in one of the world's gemstones, the Yukon,

Canada. My

> life's physical journey over the past eight years has been very

difficult.

>

> Three months ago, a good friend of mine was reading a magazine

article about a woman

> successfully losing weight after a long phase of gaining weight

because she was going

> through learning, at times unsuccessfully, how to deal with

something she had called

> RSDS.... " I have constant burning pain in my legs and spine as well

as varying numbnesses

> in my feet and hands... etc. "

>

> My friend couldn't wait to call me. " Jim, I read this article and

the woman in it sounded

> exactly like you! "

>

> And yes, those are all words I've used. My physical situation

includes:

> -constant numbness of both my legs from the knees through to the

toes,

> -intense burning pain in my legs,

> -a weird brownish red rash on the backs of my legs that is,

sometimes, extremely itchy,

> -fire in my spine from the shoulders to the tailbone,

> -numbness in the right half of my head especially around my ear and

eye,

> -sporadic drooping of my right eye,

> -dizziness that is constantly present in a mild form and often

shifts to intense levels,

> -more recently,as in the past six months, numbness and burning and

pain in both my

> hands especially the fingers.

> -in the morning, the bottom of my feet are quite swollen such that,

when I stand up,

> (always a painful process) my toes don't make contact with the

floor for about twenty

> minutes.

> Oh ya, and tons and tons of weariness.

>

> All of this has developed over the past eight years. It has been,

and is, very difficult. I have

> had numerous MRI's, a bone scan, Evoke potentials test, cardiac

echo, and lots of blood

> tests. I've seen my neurologist three or four times, spent nine

hours with a

> rheumatologist, and several visits to a back surgeon ( I have

a 'seriously compromised L5-

> S1 disc).

>

> I used to do physio therapy but it was always making my pains

worse. Walking is my

> favorite exercise but it has become difficult over the past year

because it makes my leg

> and feet numbness go to almost unbearable levels of intensity.

>

> The meds my doctors have me on are divalproex, difenac and diluadid.

>

> Never have any of my doctors suggested or even mentioned RSD-CRPS.

I've now read quite

> a bit, and sheesh! I sure find that lots of it fits.

>

> So, while I still don't have a diagnosis, could it be that the

doctors I've seen just haven't

> put it all together? Or are there lots of doctors that don't even

know about RSD-CRPS? Can

> it take years to figure out?

>

> Any thoughts on what I've told you would sure be appreciated.

Somedays, I think I'm going

> absolutely nuts. Others, I'm very ok. I'm not really into self-

diagnosis, but I also want to

> go into my next appointment with my doctor with as much good

information as possible.

>

> thank you in advance. I already feel far less alone.

>

> yours truly,

>

> Jim

>

>

>

>

>

>

[Guest guest]

Thank yoiu Barbara. I appreciate this. Good thoughts.

We, unfortunately, don't have a pain management clinic here in my town. Closest

is to go

to Vancouver, a two hour flight away. But, regardless, I will be raising these

thoughts with

my GP when i see her next.

Thanks for responding.

Yours,

Jim Q

Hi everyone,

>

> I am male, 45 years old, single, I have three wonderful children, I play

guitar and write

> music, and I live in one of the world's gemstones, the Yukon, Canada. My

> life's physical journey over the past eight years has been very difficult.

>

> Three months ago, a good friend of mine was reading a magazine article about a

woman

> successfully losing weight after a long phase of gaining weight because she

was going

> through learning, at times unsuccessfully, how to deal with something she had

called

> RSDS.... " I have constant burning pain in my legs and spine as well as varying

numbnesses

> in my feet and hands... etc. "

>

> My friend couldn't wait to call me. " Jim, I read this article and the woman in

it sounded

> exactly like you! "

>

> And yes, those are all words I've used. My physical situation includes:

> -constant numbness of both my legs from the knees through to the toes,

> -intense burning pain in my legs,

> -a weird brownish red rash on the backs of my legs that is, sometimes,

extremely itchy,

> -fire in my spine from the shoulders to the tailbone,

> -numbness in the right half of my head especially around my ear and eye,

> -sporadic drooping of my right eye,

> -dizziness that is constantly present in a mild form and often shifts to

intense levels,

> -more recently,as in the past six months, numbness and burning and pain in

both my

> hands especially the fingers.

> -in the morning, the bottom of my feet are quite swollen such that, when I

stand up,

> (always a painful process) my toes don't make contact with the floor for about

twenty

> minutes.

> Oh ya, and tons and tons of weariness.

>

> All of this has developed over the past eight years. It has been, and is, very

difficult. I

have

> had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and lots

of blood

> tests. I've seen my neurologist three or four times, spent nine hours with a

> rheumatologist, and several visits to a back surgeon ( I have a 'seriously

compromised

L5-

> S1 disc).

>

> I used to do physio therapy but it was always making my pains worse. Walking

is my

> favorite exercise but it has become difficult over the past year because it

makes my leg

> and feet numbness go to almost unbearable levels of intensity.

>

> The meds my doctors have me on are divalproex, difenac and diluadid.

>

> Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now

read

quite

> a bit, and sheesh! I sure find that lots of it fits.

>

> So, while I still don't have a diagnosis, could it be that the doctors I've

seen just haven't

> put it all together? Or are there lots of doctors that don't even know about

RSD-CRPS?

Can

> it take years to figure out?

>

> Any thoughts on what I've told you would sure be appreciated. Somedays, I

think I'm

going

> absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis, but

I also want to

> go into my next appointment with my doctor with as much good information as

possible.

>

> thank you in advance. I already feel far less alone.

>

> yours truly,

>

> Jim

>

>

>

>

>

>

[Guest guest]

hi Kenny,

Thanks for this. I can see where I'm going to like the RSDhope site very much.

Functioning

with so much pain, lately my fingers are becoming the new constant member of the

team,

yet without any diagnosis is exhausting in itself.

Definitely, when i go to see my GP next, I'll have lots of info for her. Are

there lots of

doctors out there that don't know about RSD?

And yes, another man! I take it we're massively outnumbered?

warmth to you, and thanks for writing,

JimQ

> Hello Jim

> My name is Kenny, I live in Mesa, AZ.,and let me be one of the first to

welcome you

to this group. There is a lot of great people here. I am no doctor, but I must

say you

should the next time you see your doc, maybe bring up the idea of RSD. One of

the web

sites I found for information was, www.rsdhope.org<http://www.rsdhope.org/> , I

learned

a lot there. pkease keep letting us know how you are doing, we care here, plus

it will be

nice to have another guy around here, LOL, you can feel free to e-mail me direct

at

naclean10@m...<mailto:naclean10@m...>

>

> With Luv,and Prays

> Kenny

>

> I'm new here and I need help

>

>

> Hi everyone,

>

> I am male, 45 years old, single, I have three wonderful children, I play

guitar and write

> music, and I live in one of the world's gemstones, the Yukon, Canada. My

> life's physical journey over the past eight years has been very difficult.

>

> Three months ago, a good friend of mine was reading a magazine article about

a

woman

> successfully losing weight after a long phase of gaining weight because she

was going

> through learning, at times unsuccessfully, how to deal with something she

had called

> RSDS.... " I have constant burning pain in my legs and spine as well as

varying

numbnesses

> in my feet and hands... etc. "

>

> My friend couldn't wait to call me. " Jim, I read this article and the woman

in it sounded

> exactly like you! "

>

> And yes, those are all words I've used. My physical situation includes:

> -constant numbness of both my legs from the knees through to the toes,

> -intense burning pain in my legs,

> -a weird brownish red rash on the backs of my legs that is, sometimes,

extremely

itchy,

> -fire in my spine from the shoulders to the tailbone,

> -numbness in the right half of my head especially around my ear and eye,

> -sporadic drooping of my right eye,

> -dizziness that is constantly present in a mild form and often shifts to

intense levels,

> -more recently,as in the past six months, numbness and burning and pain in

both my

> hands especially the fingers.

> -in the morning, the bottom of my feet are quite swollen such that, when I

stand up,

> (always a painful process) my toes don't make contact with the floor for

about twenty

> minutes.

> Oh ya, and tons and tons of weariness.

>

> All of this has developed over the past eight years. It has been, and is,

very difficult. I

have

> had numerous MRI's, a bone scan, Evoke potentials test, cardiac echo, and

lots of

blood

> tests. I've seen my neurologist three or four times, spent nine hours with

a

> rheumatologist, and several visits to a back surgeon ( I have a 'seriously

compromised

L5-

> S1 disc).

>

> I used to do physio therapy but it was always making my pains worse.

Walking is my

> favorite exercise but it has become difficult over the past year because it

makes my

leg

> and feet numbness go to almost unbearable levels of intensity.

>

> The meds my doctors have me on are divalproex, difenac and diluadid.

>

> Never have any of my doctors suggested or even mentioned RSD-CRPS. I've now

read

quite

> a bit, and sheesh! I sure find that lots of it fits.

>

> So, while I still don't have a diagnosis, could it be that the doctors I've

seen just haven't

> put it all together? Or are there lots of doctors that don't even know about

RSD-CRPS?

Can

> it take years to figure out?

>

> Any thoughts on what I've told you would sure be appreciated. Somedays, I

think I'm

going

> absolutely nuts. Others, I'm very ok. I'm not really into self-diagnosis,

but I also want

to

> go into my next appointment with my doctor with as much good information as

possible.

>

> thank you in advance. I already feel far less alone.

>

> yours truly,

>

> Jim

>

>

>

>

>