My name is Jessica, I'm 27 and I've known about RSD since I was a young child. My mother was diagnosed 6 months after my baby sister was born 24 years ago this month. What causes the worry and confusion comes from something that happened this past December.

In December I was hurt at work when someone jerked on my arm, causing horrible pain in my back. I did as I was told by the worker comp doctors and took the meds they gave me. A month later it wasn't better, but getting worse, so they sent me to PT. Again I did as I was told and tok the meds.

Last month the workers-comp doctor sent me to an orthopedist who requested an MRI. Today I went to find out the results of the MRI. The orthopedist said he only sees a little spot of arthritis. When I told him that the pain is not any better in my lower back and I now have pain in both hips, my right lef too my knee, and my left leg to my feet/toes, he became concerned. He is putting me on another medication (can't remember the name) and reccomends that I see the back specialist at his practice who is also over the nerve area there.

My mother went with me to my appointment today and asked the doctor what the chances are that I have RSD... he said I'm too young. I looked at my mom and didn't say anything. She asked what the chances are of me having RSD when there is a parent with RSD. He said he wasn't sure but still thinks I'm too young. My mother was 29 when she was first diagnosed.

Do any of you know of people who have RSD in the family? Is there any advice? The more I read online the more I see that RSD does not have a lt of research when it comes to gentics and stuff. Any information you can offer will be helpful to a worried young woman.

Too young? CHILDREN get this thing. I got it when I was 25. This guys does not know what he is talking about. It's worth seeing the other doctor I guess but if he is just as uninformed about RSD then I would find a new doctor ASAP if you can. I don't know what the work comp laws are in your particular state regarding seeing another doctor but I would try to get on that as quickly as possible...especially as it seems to be spreading to other areas. I'm not sure if it is RSD and I don't know if you have any of the other RSD symptoms besides the pain. But if you think there is a chance that this is what you have then it would be worthwhile to get yourself checked out by someone who KNOWS what they are talking about.

It's fairly common for doctors to not know much about RSD. It's a very confusing, complicated thing (not saying I think it is a good excuse just saying that reality is that most of us have run into misinformed doctors who say things that are completely WRONG about RSD and you need to run away fast from those doctors).

I don't think that there is much evidence (though someone will pop in and prove me wrong if I am) that RSD runs in families. At least...many of us have it with no history in the family. But because RSD is so complex and odd...not well understood at all...it is certainly possible that we all have it in our families but without that inciting event that kick starts it that it never manifests itself in the rest of the family. No one even really understands WHY RSD pops up after certain injuries. I sprained my left ankle the year before I got the sprain that caused the RSD...why didn't it start then? Why did it choose to start after this second sprain a year later in my ankle...but not my neck even though I sprained that at the same time? Why did it spread after the lumbar sympathetic block I had last year but not the one I have the year before?

But, doesn't mean that even if it isn't related to genetics two people in the same family COULDN'T have RSD. Maybe if you have us more info about your symptoms besides the pain we could give you some advice. But more importantly, if you really suspect RSD then you need to get to a doctor who knows about it...not this yahoo who thinks it has anything to do with age.

We're here for you. Please feel free to ask any questions, or even just to vent. This is a great place for that. I am very sorry to hear about what you are going through and while I hope that you do not, in fact, have RSD...if you do then it is really important for you to get quick treatment to try to get it into remission. The longer you wait...the harder that is. If you need to get a work comp attorney so that you can get the medical treatment you need, then do it. This is nothing to mess around with. If they have another explanation for the pain and can treat it, then great. But if it ends up being RSD you do not want to wait 6 months, a year, 2 years, etc to get a diagnosis.

I agree. You need to find a different doctor. There is no "age" barrier with CRPS to my knowledge. But the younger you are, the better chance you have at remission or better control if the condition is addressed appropriately and in a timely manner.

Know this. This condition is still widely misunderstood, even among professionals. It is clear that the doctor you just saw belongs to the group that doesn't get it.

The one that can best advocate for you is YOU.

PLEASE, please please get more opinions. You owe it to yourself.

BTW, haven't heard of any hereditary link. It's possible that you and your mother just had the same tough luck.

Good luck!

The others are right - there is no such thing as being too young to get RSD. I was first diagnosed at the age of 25 (I am now 45). I first developed it in the right side of my face. I went to sooo many drs who tried telling me I had TMJ or something similar, because they were clueless. My dentist was persistent and got me in with UVA's pain clinic. It was there that I was diagnosed and treated...they had never seen it in someone's face before, but they knew what RSD was and how to treat it!! They were aggressive in my treatment and put me in remission (for 13 yrs) until I had a big flare up in 2005. In 2009 I hurt my hand and it came back with a vengeance. I even went to back to UVA and the doctors there now were completely clueless, said I seemed depressed - really? REALLY? With the delays from misdiagnosis from so many, it spread a lot. Got a good dr now

The point is treatment is most effective early on. If you do have RSD/CRPS, it is imperative that you get with a knowledgeable dr soon. I do not know what the workers comp laws are there, but you have to fight for you!

Also, I have never heard of it being hereditary...but who knows! You could be the first case, just like I was the first UVA had ever seen or heard of it in someone's face.

Wishing you the best!
Nanc

Thank you so much for your information. I do not as of yet have many of the other symptoms so mom and I are hopefull that it is not RSD, but still worried. I'm waiting now to hear back about seeing another doctor through the guy I have been seeing. The worst thing with workers-comp stuff is the waiting. Tomorrow I start a new med to target nerve pain. Mom and I talked today and she said that we'll see if the new meds help before we start to get too worried. Again thanks soo much and I'll def be back here to learn as much as I can.

You do not need to have all of the symptoms for a proper diagnosis. It is a VERY unique condition. While there certainly are symptoms that are common, don't fall for conventional wisdom. There is not a lot "conventional" about CRPS.

What medication are you going to start?

I urge you to NOT be complacent. It is very easy to do. It took me 1 year to get a diagnosis and by then, the CRPS had been firmly set. In hindsight, I of course wish I would have been more aggressive in seeking second, third and fourth opinions. Which is what I eventually had to do to get a proper diagnosis. Time is certainly of the essence with any potential CRPS case.

Never be afraid of hurting a doctor's feelings by getting multiple opinions. A good doctor will have no problem with it and a great doctor will "encourage" it.

Good luck!

I'm not sure if this is how you spell it or not but last night I started nurotin... and I had a pretty good day today. The pain was much less, but kind of still there, more nagging than hurting as bad as it has been.

Neurontin is what a lot of us are on and it does help to some decree. You need to get to an experienced dr. to start blocks, PT, etc. Just remember "NO ICE" that is a big no no with RSD. I have to agree with everyone else. RSD has no age. There are lots of children with RSD.

I saw a new doctor this past Thursday who seems to know a lot more about RSD. He wants to do a nerve test and go from there. Mom said as of right nw things are loking good that I most likely don't have RSD, but she wants to see how the nerve test goes. Thanks everyone fr the advice and help, having somewhere to put things into words makes a big difference. Mom has also sat with me and read some posts. She thinks it's great that there is a place where people with RSD can talk and said this would have made her experience better when she was first diagnsed because she could have found someone who understood what she was going thrugh.

Hey Jessica! So happy to hear that you found a dr that knows about RSD, they are hard to find!! Good news that the neurontin is helping, hope it continues. I couldn't tolerate it, but I read on here that a lot of folks take it with successful results. I also hope the nerve test goes well for you. Please keep us posted!

All the best,
Nanc