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Janet or Laurie R.

Posted by Carmen on 11/12/01 at 09:45 (064717)

Laurie I had been asking you some questions about RSD and I appreciate you sharing your information with me and giving me insight. I am getting concerned about my own self especially after this weekend. I have done extensive research on RSD on the internet and still am not clear on some things. My doctor told me it RARELY occurs bilaterally and my symptoms were very unclear at the time of my appt. BUT this weekend my feet hurt worse than normal and there is a shiny inflammed area under both arches on the exact same spot. They have never turned red or blue or gotten cold or hot (nothing abnormal) and there has been no real reason I would suspect RSD except I had surgery in December on my hip. Now what I am wdonering is how long after the initial surgery or injury do symptoms start occuring? Everything i read is very vague or scattered about the symptoms and how they manifest.
I also have tingling in my legs and parethesias in legs, a couple numb toes, tingling in my upper back and forarms intermittently and stinging in my hands as of this weekend. No REAL 'Pain' except in feet, no fast growing long nails, hair growth, scaly skin etc etc. nothing like that has happened to me but other than reactive arthritis I can't find too much that these problems could be after all the tests I have had....my rheum. suggested tedinnitis (which can cause RSD I learned) and that comes from overuse in sports etc and not recovering long enough between exercises.
I am scared, confused and worried about what's going on with me. This has been an ongoing thing and started with my feet in June and this is where I am now.
I just don't think it can be plain old PF. Too much going on but all tests normal. I did travel in April to the islands and ate some strange foods and understand that certain viruses and infections can occur from certain foods (raw foods to be exact)and the effects can occur months after the actual incidnent.
Any thoughts on the RSD end of it? What tests do you suggest I ask my neurologist and Rheumotologist to do on Weds.? Any signs I should look for now?

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 11:00 (064721)

Dear Carmen , I am so sorry you are in pain ,also that you are scared and confused and worried . I can understand why you are feeling this way . I will try to help you as much as I can . I will also email Janet and ask her to read your post . Janet has been the one person that has helped me more than the internet and any doctor . She has been through a lot and knows more about RSD then anyone I know .

RSD has many different symptoms , and not everyone that has it has the same symptoms . Their are so many . Also I don't think their is one test they can do to see if you have it or not. I read for hours last night on a RSD site . A lot of it to me did not make any sence at all.

I think you said something that really made me think of myself . When I first hurt my foot and was diagnosed with PF I tried to learn all I can about to make it better. Then when I kept getting worse and started getting all these different symptoms , I knew it was more then just PF . Now I am not saying PF is not painful 'we all know how painful it it ' , but I just knew I had something else as well as PF.

The Neurologist I went to never once said I had RSD and at that time I think I did have it . I can't be 100% sure , but I think I did .

So you say most of your pain is in your feet right ? Do you have a Pod ? If so I would make an appointment with the Pod and talk to him or her . Liek my Pod told me last Friday , RSD is so complex . He went on to say one person can have some symptoms and another can have something totally different .

My foot has never changed colors nor has it gotten hot . Now the one thing I have noticed is my toe nails hardly grow on the RSD foot ,where my other foot they grow fine . Also my skin is very dry on the RSD foot , and the other foot is fine .

Now from what I have read and from what both my doctor's have told me , the spinal injections series ,I am going though right now are a diagnostic tool for RSD . When I had my first one done three weeks ago , I only got relief for a few hours . So I thought it did not work . When I went to see my PM doctor they told me yes it kind of worked . Meaning that since my foot was warm and my leg they did get the sympathic nerve and that is the cause of some of my pain ,meaning it is RSD. So you can ask about that if you would like .

The hope here for me is that the next two spinal injections last longer then the first one did . I go again this Thursday to have my second one done . The only bad thing about these injections for me is , It felt like someone kicked me in my back for about 4 to 5 days ... So I could not do much . But if it is going to help it is worth it to me .

I have a few sites I am going to look up for you that Janet has given to me . I will post them when I am done ...

Carmen if you would like to talk PLEASE feel free to email me anytime , I am always here. (email removed)

I feel very bad for what you are going through right now ...

Laurie R

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 11:27 (064726)

Hi again Carmen , Here are a few web sites if you would like to read more on RSD..

http://www.braintalk.org This one is the best to me . It has many support groups and message boards .

http://www.rsdrx.com/rsdpuz4.0/001.htm This has a lot of info on RSD.

http://robertgschwartz.homestead.com/page2.html

Let me know if you could not get to these...Laurie R

Re: Janet or Laurie R.RE Carmen

Andrea R. on 11/12/01 at 12:24 (064731)

A friend of mine has a 16 year old daughter who has had cronic pain just above her knee. There was an initial injury which was treated with rest and then therapy. She went through cortisone shots, more therapy and surgery to no avail. She has been in severe pain for over a year now. She can barely sleep and go to school. The local doctors thought she had RSD and put her on an antidepressant and neronton.

Recently she went to Children's Hospital in Boston where they specialize in RSD. The determined that she did not have it but did have inflamation of the nerves and that while she was on the right medications, the doses where way too low. They are stepping up the dosages until they find the right level for her.

Unfortunately we aren't children but you might want to try contacting the doctor that she saw. He is Benjamin H. Lee (Anesthesiology Pain Treatment Service) at Children's. I think there is also an RSD clinic at Mass General.

According the my friend there is alot of miss information on the web about RSD because even the doctors aren't sure about it.

Re: Laurie

Carmen H on 11/12/01 at 13:11 (064732)

The below phrase is what I just read off one of those sites you sent me. I don't really have any of these.....the burning pain I have had is gone (used to be in feet and lower back) and the pain I have is exactly the same on both sides. I have a tiny bit of inflammation in my arch but not enough unless you were me and know my feet. My husband thinks I am nuts and he can'
t see a thing wrong with my feet.
But anyway...i am going to keep reading and looking into it. You never know. I appreciate you so much and your offer of advice and your email. Thank you for your concern and kind words. I never fail to be touched by the kindness I find in people.

'The best guideline for the diagnosis of RSD is the presence of the following criteria.

1. A constant burning pain that is elicited even with a breeze or a touch (allodynia).

2. Any manifestation of the disturbance of motor function in the extremity such as constriction of the blood vessels (cold extremity and poor circulation), or movement disorder such as tremor, dystonia and flexion spasm, atrophy or weakness of the muscles of the extremity.

3. Evidence of inflammation (swelling) in the involved area. This may be in the form of simple swelling (edema), skin rash (neuro-dermatitis), spontaneous bleeding, blotchy skin, and other forms of discoloration of the skin.

4. Disturbance of limbic system function. The sensory sympathetic nerve fibers ascend through the spinal cord up to the brainstem and thalamus and terminate in limbic system (marginal system which is at the margin of old and new brain). This system, which is mainly over the temporal lobe and frontal lobe regions, is responsible for control of emotion, expression of proper judgment, and memory function, and control of diurnal cycle (through the brainstem influence on the sleep wakeful cycle).

A true RSD patient suffers from insomnia, agitation, depression, disturbance of judgment
manifested by willing to have any type of operation and any other type of treatment that comes by, and complications of attempted suicide, as well as weight fluctuation.

Without some manifestation of the above four categories, one cannot make the diagnosis of RSD. RSD cannot be ruled in or out by trust of exclusion. For example, if the patient has carpal tunnel syndrome secondary to RSD, then the patient's diagnosis is not a simple carpal tunnel syndrome but RSD causing carpal tunnel syndrome, etc.'

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 16:13 (064738)

Dear Andrea , I am so sorry for your friends daughter that is in so much pain. To be that young and not even yet began her life it is so sad ... I will pray for her. I am happy to hear that she does not have RSD , but from what you say ,whatever she has is not good either.

Yes you are right , their is some miss info on the net. I read a lot then I pick what I want to believe . I also ask people that have RSD and I ask my doctors lot's of questions . It is very complex .

Carmen I hope they do find out what is causing your pain. If you really feel it is more then PF PLEASE don't give up on your search .. You have such a postitive attitude and that will get you through this ....

My best to best to both of you , Laurie R

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 11:00 (064721)

Dear Carmen , I am so sorry you are in pain ,also that you are scared and confused and worried . I can understand why you are feeling this way . I will try to help you as much as I can . I will also email Janet and ask her to read your post . Janet has been the one person that has helped me more than the internet and any doctor . She has been through a lot and knows more about RSD then anyone I know .

RSD has many different symptoms , and not everyone that has it has the same symptoms . Their are so many . Also I don't think their is one test they can do to see if you have it or not. I read for hours last night on a RSD site . A lot of it to me did not make any sence at all.

I think you said something that really made me think of myself . When I first hurt my foot and was diagnosed with PF I tried to learn all I can about to make it better. Then when I kept getting worse and started getting all these different symptoms , I knew it was more then just PF . Now I am not saying PF is not painful 'we all know how painful it it ' , but I just knew I had something else as well as PF.

The Neurologist I went to never once said I had RSD and at that time I think I did have it . I can't be 100% sure , but I think I did .

So you say most of your pain is in your feet right ? Do you have a Pod ? If so I would make an appointment with the Pod and talk to him or her . Liek my Pod told me last Friday , RSD is so complex . He went on to say one person can have some symptoms and another can have something totally different .

My foot has never changed colors nor has it gotten hot . Now the one thing I have noticed is my toe nails hardly grow on the RSD foot ,where my other foot they grow fine . Also my skin is very dry on the RSD foot , and the other foot is fine .

Now from what I have read and from what both my doctor's have told me , the spinal injections series ,I am going though right now are a diagnostic tool for RSD . When I had my first one done three weeks ago , I only got relief for a few hours . So I thought it did not work . When I went to see my PM doctor they told me yes it kind of worked . Meaning that since my foot was warm and my leg they did get the sympathic nerve and that is the cause of some of my pain ,meaning it is RSD. So you can ask about that if you would like .

The hope here for me is that the next two spinal injections last longer then the first one did . I go again this Thursday to have my second one done . The only bad thing about these injections for me is , It felt like someone kicked me in my back for about 4 to 5 days ... So I could not do much . But if it is going to help it is worth it to me .

I have a few sites I am going to look up for you that Janet has given to me . I will post them when I am done ...

Carmen if you would like to talk PLEASE feel free to email me anytime , I am always here. (email removed)

I feel very bad for what you are going through right now ...

Laurie R

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 11:27 (064726)

Hi again Carmen , Here are a few web sites if you would like to read more on RSD..

http://www.braintalk.org This one is the best to me . It has many support groups and message boards .

http://www.rsdrx.com/rsdpuz4.0/001.htm This has a lot of info on RSD.

http://robertgschwartz.homestead.com/page2.html

Let me know if you could not get to these...Laurie R

Re: Janet or Laurie R.RE Carmen

Andrea R. on 11/12/01 at 12:24 (064731)

A friend of mine has a 16 year old daughter who has had cronic pain just above her knee. There was an initial injury which was treated with rest and then therapy. She went through cortisone shots, more therapy and surgery to no avail. She has been in severe pain for over a year now. She can barely sleep and go to school. The local doctors thought she had RSD and put her on an antidepressant and neronton.

Recently she went to Children's Hospital in Boston where they specialize in RSD. The determined that she did not have it but did have inflamation of the nerves and that while she was on the right medications, the doses where way too low. They are stepping up the dosages until they find the right level for her.

Unfortunately we aren't children but you might want to try contacting the doctor that she saw. He is Benjamin H. Lee (Anesthesiology Pain Treatment Service) at Children's. I think there is also an RSD clinic at Mass General.

According the my friend there is alot of miss information on the web about RSD because even the doctors aren't sure about it.

Re: Laurie

Carmen H on 11/12/01 at 13:11 (064732)

The below phrase is what I just read off one of those sites you sent me. I don't really have any of these.....the burning pain I have had is gone (used to be in feet and lower back) and the pain I have is exactly the same on both sides. I have a tiny bit of inflammation in my arch but not enough unless you were me and know my feet. My husband thinks I am nuts and he can'
t see a thing wrong with my feet.
But anyway...i am going to keep reading and looking into it. You never know. I appreciate you so much and your offer of advice and your email. Thank you for your concern and kind words. I never fail to be touched by the kindness I find in people.

'The best guideline for the diagnosis of RSD is the presence of the following criteria.

1. A constant burning pain that is elicited even with a breeze or a touch (allodynia).

2. Any manifestation of the disturbance of motor function in the extremity such as constriction of the blood vessels (cold extremity and poor circulation), or movement disorder such as tremor, dystonia and flexion spasm, atrophy or weakness of the muscles of the extremity.

3. Evidence of inflammation (swelling) in the involved area. This may be in the form of simple swelling (edema), skin rash (neuro-dermatitis), spontaneous bleeding, blotchy skin, and other forms of discoloration of the skin.

4. Disturbance of limbic system function. The sensory sympathetic nerve fibers ascend through the spinal cord up to the brainstem and thalamus and terminate in limbic system (marginal system which is at the margin of old and new brain). This system, which is mainly over the temporal lobe and frontal lobe regions, is responsible for control of emotion, expression of proper judgment, and memory function, and control of diurnal cycle (through the brainstem influence on the sleep wakeful cycle).

A true RSD patient suffers from insomnia, agitation, depression, disturbance of judgment
manifested by willing to have any type of operation and any other type of treatment that comes by, and complications of attempted suicide, as well as weight fluctuation.

Without some manifestation of the above four categories, one cannot make the diagnosis of RSD. RSD cannot be ruled in or out by trust of exclusion. For example, if the patient has carpal tunnel syndrome secondary to RSD, then the patient's diagnosis is not a simple carpal tunnel syndrome but RSD causing carpal tunnel syndrome, etc.'

Re: Janet or Laurie R.RE Carmen

Laurie R on 11/12/01 at 16:13 (064738)

Dear Andrea , I am so sorry for your friends daughter that is in so much pain. To be that young and not even yet began her life it is so sad ... I will pray for her. I am happy to hear that she does not have RSD , but from what you say ,whatever she has is not good either.

Yes you are right , their is some miss info on the net. I read a lot then I pick what I want to believe . I also ask people that have RSD and I ask my doctors lot's of questions . It is very complex .

Carmen I hope they do find out what is causing your pain. If you really feel it is more then PF PLEASE don't give up on your search .. You have such a postitive attitude and that will get you through this ....

My best to best to both of you , Laurie R