Hello all,

A little back story:
I had surgery on my left elbow and hand 7 months ago and I have had nothing but chronic pain since and I was in much better shape before the surgery. The surgery I had was cubital and carpal tunnel at the same time. I found out afterwards from other former patients that their surgeons said it is NOT a good idea to have both done at the same time due to recovery problems.
Now, I am being told that I may have CRPS/RSD but I do not have all of the symptoms. I can tolerate touch to my hand and I do not have discoloration. The symptoms I do have are chronic pain that can be intense considering how long it has been since the surgery, stiffness, swelling, sensitivity to temperatures and no way of normal relief.
From the looks of it I probably have CRPS/RSD but I want to rule out it being a failed surgery that may have just ended up keeping my nerves entrapped. One other thing that occurred after the surgery was that they had used dissolvable sutures that never dissolved and were in for nearly a month causing me further discomfort and embedding into my skin they had to be removed in the office as they never dissolved. Even though I did my occupational therapy shortly after and did my at home exercises I sometimes wonder if the nerves got trapped due to far less activity after recovery and the sutures binding up that area and embedding?
So, that is all the info I can think of to share now I’m wondering if I truly have CRPS or do I have nerves that were aggravated and entrapped again due to bad treatment? Anyone go through anything similar?
I don’t know what to do. I have seen a neurologist and pain specialist and I am currently taking Gralise (neurontin) and Norco plus I try to keep it moving and use my left hand and arm as normal to maintain muscle. It has been only 7 months am I only at the beginning stage and will things get worse? OMG how can I handle that. By the way I’m a lefty and that is the arm and hand that are affected. This is so hard and I’m a father of a 9 and 12 year old and I feel like I can’t live up to being the dad I use to be.

Help please

I am 7 months into this since my surgery and wondering if things will get worse? I wonder if it is CRPS or something to do with the surgery? Any advice on some steps to take to determine what it might be would be greatly appreciated.

Hi, Welcome to Neurotalk! Great to have you. Sorry you believe this is rsd. Sometimes, we do not have all the symptoms at one time. This is why the specialist got rid of the stages.

Most of us end up on numerous medications to control the pain and the other symptoms related to this monster of a disease. example. I am on Neurontin, which helps with the burning and the electrical shocks, Butran's that helps with the pain, clonidine which helps with the pain, vasoconstriction (temperature) and the blood pressure problems that occur when your in chronic pain. Abilify, for depression for loosing my job, my life as I knew it. Stool softners because of all the medications, Zofran, for nausea and vomiting and nexium from all the medications. Last but not least. Estrogen for the hot flashes.

UGG! I am a walking drug store.

Not everyone needs all this. This is what works for me anyway, welcome to the group.

My affected area is also in my good hand/arm. I've also had surgeries on my hand that may or may not have made it even worse.
Finding the right doctor(s) will be key in understanding exactly what you're dealing with. Having an ortho, a doctor for pain management, neuro, physical therapist and whatever else you can muster together to make a team working for you, that's when you have the highest chance of stopping or slowing down rsd. Thats what I try to do.
As a result, I feel im getting the right medications, treatments and therapies I feel will help me the best with what situation I am in personally.
Everybodys situation is different but early treatment is a big plus. I wish you luck, I also have children and am fairly new to this so I feel for you.
Good luck and best wishes.

It certainly sounds like RSD to me but can't you get a scan to ensure it is not a trapped nerve.

What kind of scan like and MRI?

I had one and was told it looks like I have a full release but, they did not do a contrast so I wonder how that can be seen.

Not sure after my botched infusion which left me with an infection from hand to shoulder they did an untrasound and found I had 7 DVT's in my arm, don't now if trapped nerves would show on one

Has anyone here been able to work while having CRPS/RSD?

The reason I ask is that after my surgery my plan was to find a job closer to home and go to night school. Of course now there is a big question mark on both. However, I have been conducting a job search but I am afraid that if I get something I won't be able to handle it due to the meds and constant pain. Makes me wonder if it is doable.

Hi Larry. I had hoped to return to the same career I had before I took a long leave to raise my child. I had just started to apply for like positions when I came down with crps. I now have a very casual job that allows flexible hours and I get a fraction of the pay I used to bring home. I'm going through a bit of the grief process because I used to be very good at what I did and now it looks like I have to give it up. In my mind the meds would not allow me to be as alert as I would need to be. For me, the distraction of any work benefits me so I'm not concentrating on the pain. I guess I'm lucky in that I found a place to work that realizes my illness and it's limitations. They are very protective of me. With that said, I still would rather return to my original career.

I completely understand what you are going through.

Hello

I've been told by my primary doctor that he suspected possible RSD/CRPS so he sent me to a neurologist she put me on neurontin to help calm the nerves that may have been aggravated. Also, the person who did my surgery had me get an MRI of my hand and wrist which showed some lucencies and put in the report that maybe RSD or arthritis was involved. When I show the report to my neurologist she said that the RSD was a garbage diagnosis and she did not think I had it and now my former hand specialist and primary doctor think that I do not have RSD/CRPS because I do not show enough symptoms.

I also started seeing a pain specialist and he started out saying he thought I had a form of RSD/CRPS on the first visit and then on my second when I came in for a possible sympathetic ganglion block we discussed the block and he took a look at my hand again and stated he does not think I have RSD/CRPS due lack of symptoms.

Now I don't know what to think because I have quite a lot of pain but, I do not have much swelling nor discoloration, I can handle touch and heat and cold are only a minor difference. So, my main symptoms are pain, some burning sensation in my hand and when I sit and lay down some burning sensation from my shoulder and near shoulder blade area that seems to radiate down.

So, I am very confused with the back and forth diagnosis on this and still have a boat load of pain but maybe not the RSD/CRPS symptoms.

Any advice with my situation?

Please