[Mayden]

Hi All,
I actually put my husband's symptoms in google and was quite surprised that Reflex Sympathetic Dystrophy came up, I had never heard of it. He seems to have many of the symptoms, he had a partial hand fusion and carpel tunnel in August, all seemed to be going well until about late October when his shoulders began to freeze up, he put this down to maybe getting out of bed and doing things with his elbows, but they just got so bad. The scan came back that he had spurs but they said that should not be causing all the swelling and fluid. Then his other hand turn really strange, deformed and huge practically overnight. We expected a little deformity in the hand that was operated on, but the other one is strange. He used to have quite long slender fingers now they are big fat sausages. He had that x-rayed and nothing showed up. He is in excruciating pain, cannot sleep, walks around the block all night and he cannot sit or lay down. He is 58 years old but works out, well used to every day, so is quite fit. We now remember he has had something very similar many years he had an arthroscope on his knee, he thought that they lifted him off the operating table by the arms and ripped them. He is booked in for an injection on Friday and is going to the doctor tomorrow as he does not have any pain meds left, he was taking OxyContin. Sorry to be so long but my question is if the doctor does not take this any further and if he does not get better how do you suggest to a doctor that you may have something like RSD I know they must get fed up with people self diagnosing a lot of the time. Can this be something that can occur when one has an operation?
Cheers
Dee

[mrsD]

Welcome to NeuroTalk:

There is another possibility:

Thoracic Outlet Syndrome: TOS

here is the link...
http://neurotalk.psychcentral.com/forum24.html

Some people who get wrist/ankle surgeries develop RSD afterwords. There are some British studies that showed using Vit C 1000mg for 50 days during the surgery and after, reduced this risk. It may be too late to do this for your husband, but since it is so benign...I'd try it anyway.

[birchlake]

It is very important that you get a solid diagnosis here as soon as possible. CRPS (RSD) is one of the most misunderstood conditions in the human body, even by professionals. What type of injection is your husband scheduled to have?

Yes, your husband does have many of the symptoms of CRPS. But we're not doctors here and your husband needs to find one that is familiar with CRPS and is able to distinguish between that, TOS, etc. CRPS can be both underdiagnosed and overdiagnosed.

Point blank, you need to bring it up and ASK the doctor about the possibility of this being CRPS.

And also ask the doctor how much experience they have with it. My diagnosis was delayed as well as I spent months in a camwalker waiting for my foot to get better when instead, my foot exploded with inflammation and pain. Having that toe immobilized solidified my CRPS. Very important to gently keep things moving.

And yes, it can definitely be caused by an operation. Mine was a complication of a fusion surgery on my big toe. I definitely can relate here.....I am not blaming my surgeon, but it would sure have been nice to get a quicker diagnosis so I could have started my treatments earlier. Can't treat something effectively until you KNOW WHAT IT IS!

Good luck to you but dig in and get aggressive. Don't be afraid to seek a second, third, fourth opinion here. Some doctors have virtually zero knowledge base with CRPS, others can be very helpful. Time is of the essence.

This forum is a good place for both information and support. Good luck to you guys!

[catra121]

The previous posters have all given you great advice. RSD is such a strange thing and it affects many people differently, so it can be very difficult to diagnose. Definitely you should ask the doctor about the possibility...especially if they are at a loss as to what may be causing these problems. I had never heard of RSD until I was diagnosed with it...and that was after I had already been seen by a number of doctors and been in pain for about 6 months. By that time I had been told to treat with ice and to immobilize the limb (both of which are very bad for RSD and actually make it worse).

One thing I would suggest is doing some research about RSD online. When the doctor mentioned RSD to me, I had never heard of it before. But when I looked it up online I felt like a light went on because here was finally an explanation for all the weird problems I was having (swelling, burning pain, ice cold to the touch, VERY sensitive to the touch, etc). I did not have EVERY symptom...but I had at least one in each of the four categories they use to diagnose RSD. But just reading the info online I KNEW this was what I had because it really put into words what I was feeling and going through.

But...symptoms that you get with RSD could also be caused by other things...and those things really need to be ruled out before you can really be sure that it is RSD (or more importantly for the doctors to be sure). RSD is a clinical diagnosis...meaning that the doctors really have to see the symtoms and hear about them from the patient. What I have found helpful is to write down all the crazy stuff that I am going through...all the symptoms...and then bring that list in to the doctor so I don't forget anything. In the moment it is easy to forget to mention things that could be key for the doctor to understand what is happening to your husband.

As stated too...many doctors are not very familiar with RSD. When I was first injured and treating with a work comp doctor, I mentioned my leg getting ice cold to him numerous time, mentioned it to the physical therapist he sent me to, mentioned it to the orthopedic doctor I went to...and they all said it was probably just a circulation problem. They all ignored a very important symptom of RSD...I can only assume it is because they are not familiar with it. If YOU bring it up, then they may either look it up or it will make them think about something that they have not seen personally but know about. Even if they are not sure, they may be able to refer you to someone who would be better qualified to diagnose something like RSD.

I'm very sorry to hear what you and your husband are going though. Please feel free to ask any questions or even just vent about what you are going through. Regardless of what your husband's diagnosis ends up being, it is VERY difficult to live with any type of chronic pain. I hope that he is able to get a diagnosis soon so that he can start receiving proper treatments. Good luck to both of you.

[alt1268]

I have to agree with everyone here. You must just be direct to the dr. and be prepared they may dismiss your thoughts of CRPS. If you don't get any good answer then you should consult another dr. who is familiar. Good luck and let us know.

[Mayden]

Thank you very much to all of your replies.

Hubby just came back from the doctors, all his blood test were OK except for his CRP levels, in June before the operation they were 1.9, now they are 29. He mentioned CRPS to the doctor but he had never heard of it and was not the least bit interested. (which I expected) He has his first steroid injection tomorrow in his shoulder, the doc has prescribed Panafcort and OxyContin. The doc also dismissed the fact that the opposite hand was swollen and deformed! He just said but you had the other hand operated on. He has an appointment at the hospital where he had the hand operated on in February, but my experience with orthopaedic surgeons is that they operated on you and all is fine they cure everything. I have yet to meet one I respect or even like a little, they seem to be a breed of their own. Hubby was very happy with this doc and the hospital, this is just something unforeseen that has happened after, I am not complaining of his treatment in hospital, just want to ease the pain now and find out what is wrong.

Just thought I would update this, I will now read again all your replies and look up what these CRP levels mean.

Cheers

[catra121]

Originally Posted by Mayden

Thank you very much to all of your replies.

Hubby just came back from the doctors, all his blood test were OK except for his CRP levels, in June before the operation they were 1.9, now they are 29. He mentioned CRPS to the doctor but he had never heard of it and was not the least bit interested. (which I expected) He has his first steroid injection tomorrow in his shoulder, the doc has prescribed Panafcort and OxyContin. The doc also dismissed the fact that the opposite hand was swollen and deformed! He just said but you had the other hand operated on. He has an appointment at the hospital where he had the hand operated on in February, but my experience with orthopaedic surgeons is that they operated on you and all is fine they cure everything. I have yet to meet one I respect or even like a little, they seem to be a breed of their own. Hubby was very happy with this doc and the hospital, this is just something unforeseen that has happened after, I am not complaining of his treatment in hospital, just want to ease the pain now and find out what is wrong.

Just thought I would update this, I will now read again all your replies and look up what these CRP levels mean.

Cheers

I totally understand your husband's feeling about being happy with the doctors and everything up until the complications. My RSD spread after a lumbar sympathetic block and I had no issues with the doctor until he refused to even admit the possibility that there were complications from the procedure. I know many docs are probably just concerned about malpractice lawsuits and stuff...but when you have a new issue with your condition...whatever it is and regardless of the cause...they should still be willing to treat you and address the new problems. It is a frustrating situation that many have unfortunately had to deal with.

Perhaps what your husband needs now is to be referred to a pain management specialist to address his current pain. They would probably be in a better position to diagnose a condition like RSD because it is not something that would generally fall under the orthopedic specialty. A neurologist is another good option, especially if RSD is suspected.

As a side note, once my RSD spread to the new areas and I had a lot of inflammation and puffiness that came along with it in the new areas, my sed rate and CRP levels went up significantly. Most docs have told me that it is not a really good test to help diagnose anything because it simply tells them that SOMETHING is wrong but not what is causing it. I was sort of like, Well I already know I have a lot of inflammation...just look at how much swelling and redness I have...but they had the test results to confirm it I guess.

[birchlake]

Originally Posted by catra121

Perhaps what your husband needs now is to be referred to a pain management specialist to address his current pain. They would probably be in a better position to diagnose a condition like RSD because it is not something that would generally fall under the orthopedic specialty. A neurologist is another good option, especially if RSD is suspected.

I agree completely. The fact that the surgeon has never heard of CRPS (and wasn't interested in researching it) is not a good sign. In fact, it is a big red flag. The fact that the opposite hand that was NOT operated on is swollen and deformed is the smoking gun that something is really amiss here. And CRP levels.....yes they measure inflammation, but don't do anything to help understand root cause.

Your husband really needs another opinion and I agree that a pain management doctor or a neurologist that specializes in CRPS (not even all neurologists really understand CRPS) should see him.

What you are experiencing is what MANY of us have already gone through. Many doctors just do NOT understand CRPS. Don't get sucked into their black hole of ignorance and denial by not wanting to get another opinion! You must take control of this situation. Don't feel afraid that you are going to hurt the feelings of the surgeon by getting another opinion; it's YOUR lives. It took me 5 doctors and a physical therapist before I got a solid diagnosis!