[kemmererja]

Hi, I am new to RSD and trying to help my wife. We are devastated with what we read about RSD. My wife was walking on the rail trail and simply tripped on Sept 14 this year. She broke 2 fingers and fractured a 3rd. She was in a cast for 4 weeks where the bones nicely healed. When the cast came off, her 3 fingers were extremely swollen and painful. She consulted with 2 orthopedist and a pain management doctor who all concluded through xrays that the bones were fine but now has moderate to severe rsd. Question: Is it normal with RSD to not be able to move her 3 fingers? Since the fall, she has been 100% motionless with these fingers. Should the doctors be doing other types of tests on her fingers other than xrays? Would a cast that my wife complained to the doctor about being too tight make the fingers motionless? Any comments are appreciated. She has been on lyrica for 5 days and some patch for 3 days.

Jerry

[kathy d]

Hi Jerry,
I am so sorry for you and your wife as I (as well as others on this site) know all to well the devastation rsd causes in so many ways. It seems like the trauma your wife did to her fingers by falling caused the rsd. The cast may have been too tight or she may already have had it but most doctors don't believe how much pain we are in when the initial injury occurs. Most think we are faking it (who would want to fake this pain)??? I am glad her bones have healed but with rsd it is a hit and miss thing. Doctors normally start out doing nerve blocks in the spine that corresponds to the injured area. Sometimes it helps other times it doesn't. I had an initial crush injury to my foot and did not use that foot at all for any reason for a year and a half. If I had an axe I would have cut it off the pain was that bad. Unfortunately for me, my pain mirrored itself into the opposite foot/leg almost immediately and within four months I was completely full-body and could not move at all. My internal organs began not working. It was a nightmare and that was over six years ago but I am surviving. I have tried all the meds, pain meds, lidocaine infusions as well as ketamine infusions and within the last 8 months have gotten off all pain medication (after five years of heavy opioids) and try not to take anything at all. I have found that opioids just mask the pain which is the problem and it does a job on your insides and teeth as well. I put myself on a PT program which is really helping me and I've gotten all natural iv's over the last year which helps me immensely too.

I would tell your wife to try not to take pain meds and try to get the nerve block to start and then some very light PT (with no ice on the injured area). She has to try and stretch her fingers even for the slightest movement each day in order to keep from atrophy setting in. Even if she tries to touch a towel or anything with her bad hand...movement is very very important. I know she will prob scream and say no she can't do it which is totally true but she has to do it a small bit at a time. I almost passed out a few times doing PT in the beginning but I started out with baby movements and then a year later went to a great chiropractor. It is all a "try to see what works for your wife" attitude with treatments. Being a compassionate caretaker for her is an amazing first step for her and you should be proud of yourself for helping her and being her caretaker. Many people and family members just don't get it which I hear from the top docs is normal. Having her be able to deal with the pain while you do the phone calls, etc. is a huge help to her. I have found meditation and breathing helps too. I do pray alot and try to laugh at least one good one a day helps too. Best of luck to you both and let us know how she is doing. We are all here to help you out in any way...just ask. We are one big family now.
Take care,
kathy d

[catra121]

It is definitely normal for her to not be able to move her fingers...especially if they are really swollen and have been immobilized for a while. The injury probably caused the RSD and then the immobilization made it worse. Immobilization and RSD just do not mix as RSD is a use it or lose it sort of deal. It hurts to move (and you don't even feel like you can sometimes) but if you don't move then the pain gets even worse. Terrible thing really.

I am so very sorry for you and your wife and what you are going through right now. Definitely advocate for treatment ASAP and make sure that you wife does whatever she can in terms of physical therapy. It is a slow process and painful but if you don't do it things just get even worse. And definitely no ice.

Everyone here on the forum is really nice and we are here for you and your wife. If you have any questions, just ask. Good luck to both of you.

[LIT LOVE]

Her best shot for remission is aggressive, EARLY treatment!

[birchlake]

The best thing I can think of here is to get her started with light physical therapy. Not moving an affected CRPS area is not a good thing. Be sure that the therapist has actual experience with treating people with CRPS, as the wrong therapist can be a painful experience.

ASK THEM POINT BLANK how much experience they have. It is one of the most important questions to ever come out of your mouth. You need people with experience treating this, as CRPS is widely misunderstood, even by professionals!

It took me more than a few appts. and interviews before I settled on an experienced "compassionate" team which includes a podiatrist, general practitioner, physical therapist, chiropractor, massage therapist and a pain management doctor.

Good luck.............

[alt1268]

I agree early agressive treatment is a must. NO ICE either! that is a big no no with RSD. If you can get into someone who does sympathetic nerve blocks ASAP, your wife as a better chance of having a remission.
I find it wonderful that you already have been told that she has this. Not that she has this but that she had doctors who are familiar with RSD. Most of us were not so luckly and have to go doctor to doctor, until we can find someone who is knowledgable.
Anywho, welcome to both you and your wife. We are a great family here. You are welcome to rant, rave, vent or just ask questions.

[hear4]

I have lower bilateral RSD from my toes up past my knee's. It was not diagnosed correctly for over a year. I have to agree with all the posts to help your wife. Not moving her fingers will cause RSD to get worse. You must take special care in getting the correct Physical Therapist. I will keep her in my prayers for healing and ask for a miracle so she doesn't have to have this horrid disease. Your friend, hear4

[kemmererja]

Thank you so much for all your input. It is very much appreciated. My wife had her first Stellar Ganglion Nerve Block today. We are not sure how to interpret the results. She went into the procedure with a pain level of 3 and left with a pain level of 4. She also left with a slight red streak going down her hand that was hurting which she has not had previously. So the nerve block did nothing for pain. But I am curious why her hand with the RSD, which has been cold was now significantly warmer than her good hand. I assume more blood is now flowing into the RSD hand. We were so disappointed in the outcome of no reduction of pain Nurses and doctors were all touting how wonderful the block would be and how some wake up from the procedure with no pain and can move their fingers. While it is wonderful for many, it did nothing for us. We also expected more since the injury happened a little over 2 months ago. So we are sad. The doctor wants to try another block next week to see if we have a better outcome.

[catra121]

This is similar to what happened to me with the very first block I had (lumbar sympathetic block since my RSD was at the time only in my left ankle). My leg turned a deep red and got warmer...but my pain was not reduced. I was told since there was a change in temp and color that meant that the block was successful...but my pain was not reduced so that doctor did not want to do any more blocks. A year later I had to find a new doc when that doctor decided to retire and the new one wanted to do a series of blocks because he thought that the build up of the meds in my system would maybe reduce the pain. Don't lose hope though...this early on she definitely has a better chance for remission. Maybe the next time they will try a slightly different spot or slightly different meds/doses...and you may see better results.

How is everything else going? Is she doing any physical therapy, find a combinations of meds that help, etc? I know it is disappointing when you put so much faith in something and then having nothing to show for it. This was how I felt after that first block. I fought so hard with the insurance company to get it and then when I did...nothing. I actually cried right on the spot because I was so disappointed. But you just gotta keep focusing on the good things and know that if this doesn't work you're on to the next thing.

[alt1268]

I to have bilateral lower extermity rsd and can say I have many lumbar sympthatetic blocks. none that last. But my foot turns bright red and warm, which gives me more ability to move.
My shots were all 2 to 3 weeks apart, until this last episode. We did one week apart and the first one I had no pain improvement the 2 I had minor improvement. The third one, I got to wear a real shoe for several days, with decreased pain.
Don't give up, try the series. Everything is still early. It would help if she was in occupational therapy.