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I finally talked to my Pod

Posted by Laurie R on 6/08/01 at 00:59 (050228)

Hi to all who cares about my on going story.

Here is the deal ,my pod had to wait for the report from the specialist I saw ... He only got a small report and it did not say much. Yesterday he got the whole report he was waiting for ,he said he did not want to talk to me until he got the opinion from the specialist so he could answer my questions. Well I had my list ready by the phone.

My Pod said that the specilist seems to think that I may have CRPS ' Copmlex Regional Pain syndrome ' Not RSD ,they are close but no the same. They both want me to see another specialist to get diagnosed....So they are going to find me one ... I do also have PF and the tenosynivitis in my FHLT .He wants me to still go to PT ,it does help to get the scar tissue down ...

Also we talked about the Prednisone and he said I don't have to take it ,but he thinks I should try it . It is up to me . Also I brought up the Vicodin and what the specialist siad . He said that his concerns were not that i was going to get addicited to it but my liver. I have never had liver problems so far. He said the amount I take per day was ok.

It is just kind of funny ,because one doctor says one thing and another says something different. But I guess we are all different.

So I went today to pick up my script and his nurse had all kinds of papers in her hand. First she gave me my script then she had a lab paper in her hand. She said that my Pod wnated me to have a blood test fo rmy liver and to check to see if I had any infection in my body. I told her this is good .I have not had any blood tests since this started 2 years now. So i went and got the blood test. The lady said that they do the test in house so maybe my Pod would have the results tomorrow .... Now lets hope I don't have a liver problem as well as everything eles.... I will let you know. Also my pod copied a bunch of info on the CRPS for me to read .... Now i thought that was very nice. I did go on the net last night and read a lot of info on it and printed 13 pages of info.

The thing is I do have all the symptoms of it and their is no cure . It says to control it is to treat it the first 6 months you have it .. Now if I do have this I have had it a lot longer than 6 months.I have said all along that I knew something else was wrong with me .I am in pain all the time and sometimes I have more pain when I am off my foot than on it. I am not making lite of just PF ... When this frist started I had just PF and it was very painful , but the pain I have now is very different and it does not ease up.Sometimes my foot burns so bad that ice does not help or anything else ...

So I will keep you all posted.

Again I am waiting .....

Thank you so much for listening ..

My very best to all.

Laurie R

Re: I finally talked to my Pod

Bob G. on 6/08/01 at 03:18 (050235)

Oh, Laurie, you've been delt a tough hand. Good luck with CRPS, I hope you find a solution soon - I've never heard of it before, but hopefully you can research it and find a solution - or become one yourself.

Best wishes to you for a successful journey. Bob G.

Re: I finally talked to my Pod

wendyn on 6/08/01 at 08:16 (050246)

Laurie - according to my doctor (and most of what I've read) CRPS is just a newer name for RSD. Please try not to panic - remember that this is what my sugeon just confirmed I probably have (and I AM GETTING BETTER!).

What do all your printouts say?

Re: I finally talked to my PodRE Wendyn

Laurie R on 6/08/01 at 11:22 (050266)

Hi Wendy, I am so learning not to panic over every little thing. Your right from what I have read also CRPS is a form of RSD. I think from what I understand is CRPS is more pinpoint area ,RSD can affect the whole limb. I could be wrong .

Did your sugeon say he thinks you have RSD?? If so how is he going to treat it?

The printouts I have are filled with all kinds of info. If their is some way I can get them to you it would be great. I think you would enjoy reading them. The ones my Pod gave me yesterday have more indept info .They are from the Journal of foot and ankle surgery book. Maybe I can scan them and e-mail them to you. I don't ever use the scanner but if you or anyone else don't mind ,you can tell me how to scan and I can get them to you. Or when I have time I can read the book for the scanner and try to do it myself.

This month makes two years this all started. Boy has my life changed ,not all bad but not to good either..I am taking one day at a time .. PT seems to be helping me more now than ever.

With this name CRPS really does not change things for me. Like my friend Janet says it is just a name for my pain... It is not the end of the world. I look at things this way ,their is always someone worse off than me.

I have been thinking a lot latly and was wondering how many people have RSD or CRPS and don't even know it ...Pain that gets worse or does not go away over sometime can't be good. Like I said the pain I have now is different from when I first hurt my foot. Just a thought.

Bob thank you for your kind words ...... How are you doing??

My best to all,Laurie R

Re: I finally talked to my PodRE Wendyn

Beverly on 6/08/01 at 15:32 (050287)

Laurie,

I think Wendy is right about RSD being the old name for CRPS. At least that is what I gathered from a pain management book I read. Has your doctor ever suggested sending you to a university based pain management program? It's something I've thought about myself, but neither of my doctors here are enthusiastic about it. (Probably because it's expensive and in this age of managed care it would cost my insurance company a bundle.)

I can certainly sympathize with the frustration of having so much time pass and not feeling better.

I have not been posting much because I've discovered I feel better spending less time at the computer.

Hang in there,
Beverly

Re: I finally talked to my PodRE Wendyn

Laurie R on 6/08/01 at 16:41 (050293)

Hi Beverly, It is so good to hear from you. So you are doing better?? I sure hope so .You have been through so much too. I do miss you though ,but if it helps for you not to be on the computer ,than that is ok.

Yes I will be going to pain management ,I need to wait to get the approval again... I have no clue how long this will take. The specialist and my Pod want me to see another specilist ..

My Pod office called while I was at PT today ,and they said my blood test came out fine ,that my liver is normal . Can you believe that I have something normal,to be honest that was kind of weird to hear.... I am happy ..

My best to all, Laurie R

Re: I finally talked to my Pod

BrianG on 6/08/01 at 18:44 (050296)

I'm just wondering how widespread this CRPS is? Is is something found the world over, or is it unique to countries like America? Where is it coming from, has it always been around? Is it caused from what we eat? Processed foods, MacDonalds, stuff like that? Funny how we are now just beginning to hear about it.

BCG

Re: I finally talked to my Pod

wendyn on 6/09/01 at 09:19 (050324)

Brian CRPS is NOT new. It's former name is RSD and/or Causaglia (sp?). Suspected cases go WAY back in history.

It is (in a nutshell) an over reaction by the sympathetic nervous system - usually in response to an initial injury or surgery.

We are only now beginning to hear about it (we as in the people on this board) because before we had these problems with our feet - there was no reason to pay attention.

If you do a search on RSD or Complex Regional Pain Syndrome on the net - you will find a lot of information.

Re: I finally talked to my PodRE Wendyn

JudyS on 6/11/01 at 10:26 (050444)

Beverly.....I miss you too!

Re: I finally talked to my Pod

Bob G. on 6/08/01 at 03:18 (050235)

Oh, Laurie, you've been delt a tough hand. Good luck with CRPS, I hope you find a solution soon - I've never heard of it before, but hopefully you can research it and find a solution - or become one yourself.

Best wishes to you for a successful journey. Bob G.

Re: I finally talked to my Pod

wendyn on 6/08/01 at 08:16 (050246)

Laurie - according to my doctor (and most of what I've read) CRPS is just a newer name for RSD. Please try not to panic - remember that this is what my sugeon just confirmed I probably have (and I AM GETTING BETTER!).

What do all your printouts say?

Re: I finally talked to my PodRE Wendyn

Laurie R on 6/08/01 at 11:22 (050266)

Hi Wendy, I am so learning not to panic over every little thing. Your right from what I have read also CRPS is a form of RSD. I think from what I understand is CRPS is more pinpoint area ,RSD can affect the whole limb. I could be wrong .

Did your sugeon say he thinks you have RSD?? If so how is he going to treat it?

The printouts I have are filled with all kinds of info. If their is some way I can get them to you it would be great. I think you would enjoy reading them. The ones my Pod gave me yesterday have more indept info .They are from the Journal of foot and ankle surgery book. Maybe I can scan them and e-mail them to you. I don't ever use the scanner but if you or anyone else don't mind ,you can tell me how to scan and I can get them to you. Or when I have time I can read the book for the scanner and try to do it myself.

This month makes two years this all started. Boy has my life changed ,not all bad but not to good either..I am taking one day at a time .. PT seems to be helping me more now than ever.

With this name CRPS really does not change things for me. Like my friend Janet says it is just a name for my pain... It is not the end of the world. I look at things this way ,their is always someone worse off than me.

I have been thinking a lot latly and was wondering how many people have RSD or CRPS and don't even know it ...Pain that gets worse or does not go away over sometime can't be good. Like I said the pain I have now is different from when I first hurt my foot. Just a thought.

Bob thank you for your kind words ...... How are you doing??

My best to all,Laurie R

Re: I finally talked to my PodRE Wendyn

Beverly on 6/08/01 at 15:32 (050287)

Laurie,

I think Wendy is right about RSD being the old name for CRPS. At least that is what I gathered from a pain management book I read. Has your doctor ever suggested sending you to a university based pain management program? It's something I've thought about myself, but neither of my doctors here are enthusiastic about it. (Probably because it's expensive and in this age of managed care it would cost my insurance company a bundle.)

I can certainly sympathize with the frustration of having so much time pass and not feeling better.

I have not been posting much because I've discovered I feel better spending less time at the computer.

Hang in there,
Beverly

Re: I finally talked to my PodRE Wendyn

Laurie R on 6/08/01 at 16:41 (050293)

Hi Beverly, It is so good to hear from you. So you are doing better?? I sure hope so .You have been through so much too. I do miss you though ,but if it helps for you not to be on the computer ,than that is ok.

Yes I will be going to pain management ,I need to wait to get the approval again... I have no clue how long this will take. The specialist and my Pod want me to see another specilist ..

My Pod office called while I was at PT today ,and they said my blood test came out fine ,that my liver is normal . Can you believe that I have something normal,to be honest that was kind of weird to hear.... I am happy ..

My best to all, Laurie R

Re: I finally talked to my Pod

BrianG on 6/08/01 at 18:44 (050296)

I'm just wondering how widespread this CRPS is? Is is something found the world over, or is it unique to countries like America? Where is it coming from, has it always been around? Is it caused from what we eat? Processed foods, MacDonalds, stuff like that? Funny how we are now just beginning to hear about it.

BCG

Re: I finally talked to my Pod

wendyn on 6/09/01 at 09:19 (050324)

Brian CRPS is NOT new. It's former name is RSD and/or Causaglia (sp?). Suspected cases go WAY back in history.

It is (in a nutshell) an over reaction by the sympathetic nervous system - usually in response to an initial injury or surgery.

We are only now beginning to hear about it (we as in the people on this board) because before we had these problems with our feet - there was no reason to pay attention.

If you do a search on RSD or Complex Regional Pain Syndrome on the net - you will find a lot of information.

Re: I finally talked to my PodRE Wendyn

JudyS on 6/11/01 at 10:26 (050444)

Beverly.....I miss you too!