Rsd
 

I am new and I have been reading this with much interest. A few months and about 4 doctors ago I was diagnosed with RSD and I still dont beilieve that is what I have. After looking at some pictures my feet or legs look nothing like that. There is no discoloration at all. The only thing wrong is in the pit of my foot hurts so badly I had to quit work because I could no longer stand on it and my second toe sticks up and wont go down and it seems to want to double under. Anyone have any types of comments for me. After 8 months I am pulling my hair out. I am now taking sympathetic nerve blocks.
Thanks

Hi Dillypooh,
 

Welcome to the group. You will get some good help here and learn a lot about RSD.

My RSD started out from TOS surgery on my right side so it started in my right arm and hand. My hand was swollen and mottled and the pain was devastating. It really makes a person want to cut off the limb that's effected. I had 3 blocks that helped with the swelling and the pain. At times it starts back up when I use my arm wrong or overdo.

I have it in my right foot also and my middle toe is deformed from it. I also have an Neuroma in my foot so I suspect that that's what started it in my right foot. We talked about surgery to remove the growth but with RSD it's possible surgery could make it worse so right now I have shots when I need them.

Hopefully the blocks will help do what they did for me. They don't always work for everyone but if they do that will be good for you.

The blocks are also used to diagnose RSD so they will use that to let them know if you have it. I have never had a block done from the waist down. Mine was SGB in my neck area.

Hopefully it won't be RSD but if it is you have found a good place to learn about it and make good friends.

Ada

Hi There And Welcome,
I Also Had A Neuroma, Pre Rsd, And Had Injections That Did Not Work, And Then Had The Surgery Whic Stopped The Pain But Left The Toes Numb, Which Was Fine With Me. Your Pain Sound Much More Like That. I Am Surprised To Hear That With That One Symptom You Were Diagnosed With Rsd ... Maybe It Is Time For One More Doctor. Are You Seeing Ortho Or Neuro Docs?
Joan

Hi Dillypooh,
Welcome to the group. You have come to the right place.You will find alot of help from the best people I have ever met. You will also find so much comfort. I feel better every time I come on here.

Sue K.

Thanks guys for the replies. Yes I have seen an ortho and neurologist.
It started off with a bone scan stating stress fracture and RSD. Everyone but my neurologist says it is RSD. I dont know what to do because I have been to soooo many doctors. Thanks again.

Everyone is not the same...
 

Dillypooh,

Sorry that you may have RSD, but welcome to a great place to be if you do!

Just because you don't have discoloration does not rule out the possibility of RSD. My feet look normal colorwise yet I can't stand for air to blow on them. The air from a fan will literally send me scurrying for cover. They ache deep within and burn. Cold makes them hurt, heat makes them hurt, standing/walking on them makes them hurt, etc., etc. Sometimes when I have shoes on my feet sweat like I'm standing in a sauna. Other times I have a sudden striking pain like someone just pounded a hot metal poker through one of my feet. Go figure, huh? My point is that symptoms vary from one person to the next, but pain is a common thread.

I've communicated with several people who cannot even stand for socks or shoes to touch their feet, much less be on their feet. So you can see that there are many variations to this monster. Time will tell.

Take care of yourself,

:cool: EJ

I second what EJ said. I started with a deep "bone crushing pain," which was initially allieviated only by untrasound in PT sessions. A couple of months later, I developed intense sensitivity to compression. However, I didn't have my first color change until something like three years later!

Fear not, however, the easiest way (I was told) to establish a diagnosis was to see if I responded to series of sypmathetic nerve blocks, and because I received them within roughly 4 months of the advent of my symptoms, I did! No, it didn't cure me, but I had a pretty good diagnosis, one which was borne out with subtler physiological changes over time, e.g., nail and hair growth. (Of course, some 9 months into my symptoms, a peripheral neurologist at the Mayo Clinic in Rochester MN declared that I didn't have RSD; I just didn't know that she was in the midst of publishing a study of the "Incidence of RSD in Olmsted Co., Minn.," and was therefore heavily into the "objective" symptomatology of the disease.)

So be well. There are many paths to the alliviation of the suffering we call RSD. If that in fact is what it is.

Mike

You guys are great and have made me feel so welcome.
Yes my foot freezes always.
Sometimes when I stand it does feel like my foot is soaking wet from sweat,
I cannot let my other foot at night touch the middle of my right foot....too painful.
My entire foot expecially my 2nd toe swells pretty badly.
My 2nd toe will not touch the floor it pokes upward.
I have no discoloration at all.
My first lumbar injection worked some for about 3 weeks and
in 2 weeks I will take my second one.
Oh and no I have never had an injury in my foot
I had cervical surgery and that is all.
God Bless:hug:

Ahhh, Now With These Latest Bits Of Info You Sound More Like One Of Us ... I Hope Not, But If So, You Are With A Heck Of A Nice Crowd!!! Joan

you may have missed an important clue!!!!!!!!
 

Welcome Dp,

You said you had a diagnosis from a scan of stress fracture. This is a high probability of where your RSD started.

I too had fractures which was how my RSD started. The only discoloration I have had is some redness and mottling when I have either been in the tub or in the cold.

I was diagnosed at the Cleveland Clinic by DR Michael Stanton-Hicks a well known RSD doc. I have also been diagnosed in San Diego at a rehab clinic, sorry but the name escapes me. While in the process of finding a new PM Doc when we moved back to PA. I saw a PM Doc at my local hospital. She told me she wouldn't treat me as I didn't have an dicolorization therefore no RSD.

I have been with BT 1 and now 2 since 1999, I used to post alot but now I mostly lurk and read, but when I read your post I felt I had to post back and let you know that your symptoms are so much like my own, especially after you added that you had swelling along with the pain. I don't remember who said it but my pain is bone crushing, then almost nonexistant then extreme stabbing pain and it took me till last year to develope burning pain, I still haven't had any allodynia. Just to inform you I am 8 to 9 years into this and I still get blocks when the pain is overwelming. Please continue the blocks, they do help.

God Bless and good luck'

Thanks everyone and Barb I know another Barb that states "Knowledge is Power" on another forum which I won't mention and I think she is the most braviest person in the world:Dancing-Chilli:
Ok back to my point.
Actually I had a bone scan and it showed possible stress fracture.
And also it showed an uptake in my second toe which was something...something to RSD.
Now I dont have a clue how I got a stress fracture but that's what the test implied. Now please help on this. You say the blocks will tell if you have RSD. Does this mean when they hit the nerve and put the meds there are it relieves the pain that I have it? Sorry to be so stupid.
I get another one Thursday thank God because my foot is swollen and it hurts so bad and it is now goin up my leg. Thanks guys.

bone scans
 

every rsd/crps specialist i have seen have said that bone scan results are inconclusive without further testing. as some others have mentioned block results are far more significant.
in college i had a flare and went to see a local neuro who had me do a bone scan and when those results were inconclusive he told me it was indicitive of a non rsd/crps related problem. from what i have read about bone scans the use in diagnostic testing for rsd was basically the idea that soft spots were indicitive, has anyone had a pain specialist tell them what exactly the relationship between a bone scan and diagnosis might be? i have had a few scans over the years and the results have never been exact...i have always wondered what they were looking at and why the results very so much.
anyway back to your symptoms (sorry i am good at getting sidetracked) as someone discussed i only have significant color changes following introduction to warm or cold water or hot and cold packs. i did have obvious temp changes when my before block and after block extremity temps were compared 3-8 degrees. most of the time i have only minor swelling. the most obvious symptoms i have always displayed was the rediculous amount of pain any amount of touch would induce. back in 1990 when i first displayed the symptoms most of the doctors i saw thought that nerve damage was the cause.

All of your comments really help me and I so appreciate all of you.
Other than the pain management doctor that I see what other type of
doctor should be treating me? A neurologist I am guessing. I had one that
diagnosed my RSD also but I really didnt like him.
Hope everyone had a fairly good day:hug:

Why do you think you need another Doc???
 

DP,

This is the only forum I belong to and I am not very brave especially when it comes to pain. It must be another Barb.

Just to give you a little info, a stress fracture can happen from bone thinning as from osteoporosis, or in athletes from over use, such as shin splints or by poor diet.

You said you had uptake in your toe from your scan, Dr. Stanton-Hicks says this is a clear indication of RSD. Please don't take this as my saying it, just the Doc, I don't want to have everyone come down on me.

You said when the nerve is injected (believe me when I say,"you don't want your nerve hit at all", I had it happen once and it makes RSD pain seem like a walk in the park) and that isn't what is injected it is the area around the nerves and during a block this gets flooded with medication and if you have RSD it should give you relief for a period of time, everyone is different as to how long your relief lasts.

What makes you think you need more than one Doc? If you are satisfied with your PM Doc and you have a primary care doc why would you need to pay another doc?

Good luck with your block on Thursday and hopefully your relief will last longer with each block and you will go into remission for good. It would be wonderful to know someone that actually went into permanent remission.

One doctor is enough if you are getting what you need from him. i use my pcp and that is all. he listens, he gives me what i need, he does not push me to do anything i do not want to do, and he believes me. AMEN
joan

Thanks guys I wasnt sure about the doctors. I am seeeing my Pain Management doctor right now and he is giving the sympathetic Nerve Blocks.
The first one worked about 3 weeks but this one didnt work. I think it actually made it worse. Not only hurt my right foot but all of my right side hurts now, Especially my lower back. Wonder how many of these injections can they give you? Oh and I was asking about using another doctor because I didnt know if I should be taking some type of meds. for the condition to help me out. Oh and by the way all day today I poured sweat. Even when I was inside. It was horrible. Of course this has been happening for months but today just seem to be the worst and my cheeks stayed red as bllod like I had a sun tan. Is this a part of RSD?
Thanks for listeneing.:grouphug:

Dp,

Your PMD should order any meds you need for RSD including any antidepressants.

You can have as many blocks as your doctor and insurance company will allow. I have had RSD since 1999 and I was informed by my PMD that I could start getting blocks again at my next appointment if my pain increases between now and then.

How about giving us a list of your meds, so we know what you are on. Ok?