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Laurie

Posted by Carmen H on 11/08/01 at 15:06 (064425)

Laurie I'm curious as to how they diagnosed your RSD? How did it occur? Trauma or surgery? I really feel for you as I have read about RSD and have great sympathy for anyone suffering with that dreaded disease.

Re: Laurie

Laurie R on 11/08/01 at 15:30 (064431)

Hi Carmen , I was diagnosed with RSD in May of this year. My Pod thought I had it ,but wanted to be sure. He sent me to a foot specialist at Stanford . I had to have a test called a tenogram on my FHL tendon . So when they got the results they saw the tenosynivitis , but it still did not all add up with my symtoms I was having .

So the foot specialist said I had RSD and wanted me to get into PM to get the diagnosis through the spinal injections . Which I had two weeks ago . The PM doctor said yesterday that I do in deed have it from the results I got from the spinal injections . Even if it only lasted a few hours. So I will go have another spinal injection as soon as I can schedule it .

They believe it is from trauma to my foot due to the PF and the TTS and all the other things wrong with my foot. I have not had surgery yet. I can't have any type of surgery until they get the RSD under control. The foot specilaist told me and my Pod and my PM doctoc that if I was to have surgery now I may never walk again. So I am listening to them .

You are right it is a dreaded disease , I have read a lot about it too. Also my cousin and one of my auntie's have RSD in their feet. The pain is terrible and my foot is always ice cold ..

I don't think their is one test they do for RSD I think they go by your symtoms and how long you have had them and how they have changed .

I did learn that you can have say 10 people with RSD in their feet and we all could have different symtoms sort to say . I do not have the same symtoms as my cousin or my auntie . I thought the doctors were wrong at first . But then I learned different . To be honest I did not want to have this at all , I think I call this denial ......

I hope you are well .. Thanks for asking about me .

My best to you ,Laurie R

Re: Laurie

Carmen H on 11/09/01 at 08:25 (064479)

I'm sorry for you for sure Laurie. I guess I just wasn't aware you could have RSD in one place. I mean...I thought it was dispersed throughout the body and was very rarely bilateral. I also thought it changed the color of your skin drastically from red and hot to cold and blue etc....
Did you see a rheum. for this and how did the spinal injection diagnose the RSD? In other words did it stop the pain in your feet immediately and that's how they decided.
It's just such a hard thing to diagnose I am wondering how many people are out there with this and getting worse all the time but not beend diagnosed yet.
Is your prognosis good?

Re: Laurie

Laurie R on 11/09/01 at 10:46 (064501)

Dear Carmen , I will try my best to answer . I am really new to RSD . I do read a lot and Janet C has been my biggist help . Janet has answered my millions of questions about RSD , and always has the answer. I have learned more from her then anyone or anything else . She also has RSD and she has been through the injections and other treatemnts ..

Like I tell Janet she is my Angel and I mean this with all my heart .

Yes RSD can be in one place , the hope is that it does not spread which it can . Yes it can change the skin color to red and blue ,I don't have thoes symtoms at this point . I have not seen a rheum . I have my Pod and my PM doctor now that are working together . From what I understand from my PM doctor, with the spinal injections are if it helped at all then it means the pain is coming from the sympathic nerves . So they told me this week that the injections kind of worked.

So of course they want to do more to see if I get longer relief . The first one I got relief for a few hours . It felt so good . My foot was so warm. I could feel the sympathic nerve , because the injection was put into the nerve and it is from your spine all the way down to your foot . Now I still had pain in my foot .

The PM doctor did tell me from the start that the injections will NOT cure my foot . I have 4 other things wrong with it . He is just trying to get the sympathic nerve to calm down .

I hope you understand this . My spelling sucks and I am very dyslexic , meaning what I am thinking and what I write sometimes comes out different .

I am wondering the same thing as you . I wonder how people have RSD and don't even know it . The key thing is to get it within the first 6 months to have a chance to recover without is spreading .

Also when I was told they thought I may have RSD , I thought they were just running out of things to say I have . I really did not believe it . I have a cousin and an aunt that both have it in their feet. I do not have the same symptoms as they do .So I had told the foot specialist I had went to ,I thought he was wrong . He explained to me ,you can have RSD and not have any smyptoms at all. Then he told me that everyone is different and not all have the same . Their are different stages of RSD .

I do know after having PF for well over a year I knew their was more wrong with my foot .

I hope Janet reads this so she can help you understand it . She explains RSD beautiful . It is very complex . Even the doctor's don't know everything and their is not one treatemnt or one med that can help with it . They do use the spinal injections a lot for people that have RSD , but even if they work it is not a cure .

My foot is always ice cold and burns sometimes and aches all the time . It feels like my arch is broken , and once the bad starts in their is nothing I can do . It gets very painful . That is one thing that everyone with RSD will agree with , the pain of it .

I hope this helped .

My best to you Carmen . Do you think you may have RSD? They don't call it RSD anymore , now the new name is CRPS , cronic reginal pain syndrome.

Laurie R

Re: thanks Laurie

Carmen H on 11/09/01 at 11:56 (064512)

Well I had read about RSD (and CRPS) and thought that was the case with me and was very worried about it but had three doctors tell me morethan likely that is not the case. My symptoms are too focused and consistent. Plus one of the things that bothers me is the hamstring insertion on both glutes nad that is more than likely tendinitis from overuse.
I was just conituing to be curious about it....it's such a complex thing. I can't imagine how it gets properly diagnosed FOR certain...you know?
I have had the Somato sensory Nerve test done and that was completely normal (this was testing anything that didn't show up on the EMG and NCV test..jsut in case) too....b/c I had expressed my fear of RSD they wanted to cover all angles.
I have been through a myraid of tests and all came back normal and the burning pain in my feet and glutes and lower back has gone away. Now my feet just ache.....regular old PF I've been told.
Do you have pain ALL the time or just during the day when you are active?
So you have to live with this forever or are you seeking pain mgmt? Are you going to counseling for the 'pshychological' part of it?
thanks for all your input Laurie...

Re: Laurie

Laurie R on 11/08/01 at 15:30 (064431)

Hi Carmen , I was diagnosed with RSD in May of this year. My Pod thought I had it ,but wanted to be sure. He sent me to a foot specialist at Stanford . I had to have a test called a tenogram on my FHL tendon . So when they got the results they saw the tenosynivitis , but it still did not all add up with my symtoms I was having .

So the foot specialist said I had RSD and wanted me to get into PM to get the diagnosis through the spinal injections . Which I had two weeks ago . The PM doctor said yesterday that I do in deed have it from the results I got from the spinal injections . Even if it only lasted a few hours. So I will go have another spinal injection as soon as I can schedule it .

They believe it is from trauma to my foot due to the PF and the TTS and all the other things wrong with my foot. I have not had surgery yet. I can't have any type of surgery until they get the RSD under control. The foot specilaist told me and my Pod and my PM doctoc that if I was to have surgery now I may never walk again. So I am listening to them .

You are right it is a dreaded disease , I have read a lot about it too. Also my cousin and one of my auntie's have RSD in their feet. The pain is terrible and my foot is always ice cold ..

I don't think their is one test they do for RSD I think they go by your symtoms and how long you have had them and how they have changed .

I did learn that you can have say 10 people with RSD in their feet and we all could have different symtoms sort to say . I do not have the same symtoms as my cousin or my auntie . I thought the doctors were wrong at first . But then I learned different . To be honest I did not want to have this at all , I think I call this denial ......

I hope you are well .. Thanks for asking about me .

My best to you ,Laurie R

Re: Laurie

Carmen H on 11/09/01 at 08:25 (064479)

I'm sorry for you for sure Laurie. I guess I just wasn't aware you could have RSD in one place. I mean...I thought it was dispersed throughout the body and was very rarely bilateral. I also thought it changed the color of your skin drastically from red and hot to cold and blue etc....
Did you see a rheum. for this and how did the spinal injection diagnose the RSD? In other words did it stop the pain in your feet immediately and that's how they decided.
It's just such a hard thing to diagnose I am wondering how many people are out there with this and getting worse all the time but not beend diagnosed yet.
Is your prognosis good?

Re: Laurie

Laurie R on 11/09/01 at 10:46 (064501)

Dear Carmen , I will try my best to answer . I am really new to RSD . I do read a lot and Janet C has been my biggist help . Janet has answered my millions of questions about RSD , and always has the answer. I have learned more from her then anyone or anything else . She also has RSD and she has been through the injections and other treatemnts ..

Like I tell Janet she is my Angel and I mean this with all my heart .

Yes RSD can be in one place , the hope is that it does not spread which it can . Yes it can change the skin color to red and blue ,I don't have thoes symtoms at this point . I have not seen a rheum . I have my Pod and my PM doctor now that are working together . From what I understand from my PM doctor, with the spinal injections are if it helped at all then it means the pain is coming from the sympathic nerves . So they told me this week that the injections kind of worked.

So of course they want to do more to see if I get longer relief . The first one I got relief for a few hours . It felt so good . My foot was so warm. I could feel the sympathic nerve , because the injection was put into the nerve and it is from your spine all the way down to your foot . Now I still had pain in my foot .

The PM doctor did tell me from the start that the injections will NOT cure my foot . I have 4 other things wrong with it . He is just trying to get the sympathic nerve to calm down .

I hope you understand this . My spelling sucks and I am very dyslexic , meaning what I am thinking and what I write sometimes comes out different .

I am wondering the same thing as you . I wonder how people have RSD and don't even know it . The key thing is to get it within the first 6 months to have a chance to recover without is spreading .

Also when I was told they thought I may have RSD , I thought they were just running out of things to say I have . I really did not believe it . I have a cousin and an aunt that both have it in their feet. I do not have the same symptoms as they do .So I had told the foot specialist I had went to ,I thought he was wrong . He explained to me ,you can have RSD and not have any smyptoms at all. Then he told me that everyone is different and not all have the same . Their are different stages of RSD .

I do know after having PF for well over a year I knew their was more wrong with my foot .

I hope Janet reads this so she can help you understand it . She explains RSD beautiful . It is very complex . Even the doctor's don't know everything and their is not one treatemnt or one med that can help with it . They do use the spinal injections a lot for people that have RSD , but even if they work it is not a cure .

My foot is always ice cold and burns sometimes and aches all the time . It feels like my arch is broken , and once the bad starts in their is nothing I can do . It gets very painful . That is one thing that everyone with RSD will agree with , the pain of it .

I hope this helped .

My best to you Carmen . Do you think you may have RSD? They don't call it RSD anymore , now the new name is CRPS , cronic reginal pain syndrome.

Laurie R

Re: thanks Laurie

Carmen H on 11/09/01 at 11:56 (064512)

Well I had read about RSD (and CRPS) and thought that was the case with me and was very worried about it but had three doctors tell me morethan likely that is not the case. My symptoms are too focused and consistent. Plus one of the things that bothers me is the hamstring insertion on both glutes nad that is more than likely tendinitis from overuse.
I was just conituing to be curious about it....it's such a complex thing. I can't imagine how it gets properly diagnosed FOR certain...you know?
I have had the Somato sensory Nerve test done and that was completely normal (this was testing anything that didn't show up on the EMG and NCV test..jsut in case) too....b/c I had expressed my fear of RSD they wanted to cover all angles.
I have been through a myraid of tests and all came back normal and the burning pain in my feet and glutes and lower back has gone away. Now my feet just ache.....regular old PF I've been told.
Do you have pain ALL the time or just during the day when you are active?
So you have to live with this forever or are you seeking pain mgmt? Are you going to counseling for the 'pshychological' part of it?
thanks for all your input Laurie...