New to RSD with question
 

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

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

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.

Her best shot for remission is aggressive, EARLY treatment!

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.............

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. :welcome_sign:

I have RSD and Agree with all the replies
 

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

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.

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.

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. :)

I highly recommend Parafin dips. Either through therapy or on your own. Make sure if you do it on your own to really try and manipulate her fingers while the wax is warming her hand. Good Luck to you both :hug:

Hi, Thanks again so much for all your comments and ideas. It is very much appreciated as we try to make the right decisions. We had our 2nd nerve block today. While last week's Stellar Ganglion Nerve Block made the pain worse but did create a warm hand with the droopy face, today's was more successful. For the first time since the accident in mid-Sept, she is able with alot of painful effort to have the tip of her thumb touch the tips of all her fingers. That is a huge success since she has not been able to move two of her fingers. She was also able to sign her name using 3 fingers comfortably. But as each hour passes, she can feel more and more pain returning and getting more difficult to touch the thumb with the other fingers. Someone asked what else she is doing for treatment She is doing physical therapy 3 times per week with a certified hand therapist, ear acupuncture from an acupuncturist who has a personal interest in treating RSD, takes Lyrica, clinodine patch, daily parifin dips or epson salt soak for the hand, and hand exercises throughout the day. One of the most useful things she does when she goes to sleep is wraps her hand with globs of Topricin in saran wrap. This seems to take away alot of pain during the night. Our next nerve block is scheduled for Monday. We are hoping to get a little more mileage out of this one in fear the doctor will stop performing these nerve blocks. Thanks again for all your comments. Jerry

I am so happy to hear that the second block was more successful. I pray that the effects just last longer and longer. Sounds like you are on the right track with treatment so that is wonderful. You are a great person to stick by her and support her throughout all this. We don't always take the time to acknowledge our loved ones for their support...but it means a great deal to us when we are suffering so much. Please keep us posted on how things go...I hope she gets some long term relief with all the things she's got going on right now with treatment.

New
 

Hello, I am new to this site, and it seems already, that I am in the right place. First, let me tell you that I hate rsd, and what it does to you and your family!!!
My husband was diagnosed after sustaining a work related injury. He had to have his right shoulder operated on and go through therapy, but he just wasn't getting any better, numerous blocks and injections later, the doctor said" I think you might have rsd" sure enough.

After 2years of on going blocks and surgeries my husband can't even climb a flight of stairs without needing his inhaler. For a relatively healthy 36 yo man, asthma is not the cause, but rather rsd has affected his lungs. I feel that it has attacked his heart or it is now. My husband used to climb trees and always be on the go, now my children and I have watched a man do a complete turn around.

Over the summer it reared it's ugly head, Sean was laid up in bed for 2 months couldn't move or get out of bed. We all would have "family slumber nights" so that the kids didn't get too worried or upset. Things started to seem as if they were getting better, but now we have new symptoms: numbness in one or more extremities, anxiety attacks, chest pain, difficulty breathing and constantly feeling sick.

I have tried to contact various doctors(pain mgmt) to no avail they either don't accept our insurance or don't know enough about rsd. The one doctor we went to wanted to re operate on his r shoulder and bicepital tendon,I said no my husband is no guinea pig. So now we are at a total loss, him not working and we have to hurry up and wait for disability.
I don't work for fear something may happen to him while I am at work, leaving our children in a very scary situation. My question is, I guess I could use all the help I can get, advice wanted. Sorry to be babbling, but I am super scared for my husband! I don't want to lose my best friend, and I don't want my children to lose their father either. So any help would be greatly appreciated. My best wishes to all!!! Kathy:confused:

Kathy
I see your from NJ. There are some great docs from what I'm told in that area. Start a new thread and copy and past what you have put in this thread. You will get lots of help.
;):welcome_sign::welcome_sign::welcome_sign::welco me_sign:

I am still fairly new to RSD compared to some others, so they are still doing the lsb (lower sympathic nerve blocks) and trial scs, which have all failed, until recently I went thru 3 lsb a week apart and the heat from them has lasted longer then previous 3 weeks and I could put a real shoe on. (couldn't walk after a week with them, but I could put them on.) So don't give up, I am happy to hear the 2nd went better, I hope the 3rd will be even better. How far apart are they?:D

Our stellar ganglion nerve blocks are 1 week apart. Our 3rd one appeared to not help at all with pain or increase movement just like the 1st. I was hoping the 3rd would be better than the 2nd where the 2nd made lots of hand movement progress. So my wife continues to be discouraged. She did have a very warm hand for a few hours. We will try our 4th nerve block Monday. We wonder if it is worth doing them. Thanks for your encouragement. Jerry

My doc will only do a serious of 3. Usually several months apart. I am 2.5 years into this and because I had a little improvement my doc continues to do them. I hope 4 goes well, but you may want to take a break. Also try those parrafin dips, they are great for skin care and will warm the hand.

That has to be disappointing...but don't give up. I hope the next one has success like or better than the second one. Even if they stop after the next one and want to wait a few months in between...it may still be worth it seeing as she did get some relief from the one block. Only you guys can make that decision though. But please don't let her stop trying to find relief. Keep supporting her with therapy and other things that she can try to do to help. There is unfortunately no miracle cure...just gotta keep fighting.

My daughter had well over a dozen blocks both stellate and brachial with no good results. The only thing that has proven to work for her over the past 2 yrs has been ketamine infusions. You have access in NJ to some great doctors. I would explore that option while this is all in the early stages. There is a ketamie list at this site and FB has a great resource in Ketamine Klub.

Liz

Hi, It has been almost 4 months since the accident where my wife broke her fingers and 2 1/2 months since the cast came off which is when she was diagnosed with RSD. Her pain is well managed with a pain level average of 2 to 2.5. She has low pain levels of 1.5 and flares of 3.5. This is a big improvement because when she started RSD treatment, her pain level was a constant 6 to 7. The joints in her fingers are still frozen and swollen. Her fingers now rarely change colors but is a different color than the other hand and now rarely has the burning shooting pains. She takes lyrica and the clinodine patch. Topricin is used nightly as a gel for her fingers. She has PT 3 times per week and sees a chiropractor 3 times per week. She had 4 Stellar ganglion nerve blocks where her hand got warm for a day for each but were pretty much ineffective. Prescription anti-inflamatories appear to be ineffective and pain levels remain the same if she takes them or not. She has made very little hand movement progress but can now use scissors and other tools such as staple pullers. Her pain management doctor says he can't help her anymore other than provide the medications.

What do RSD sufferers typically do at this point? Does one search for another doctor or one of the NYC RSD specialist? Does one go for a Spinal Cord Stimulator? Does one go for ketamine treatments? Does one try more nerve blocks? Or does one do nothing and keep doing what we are doing now? She would love for this RSD to go away and to regain total use of her hand. We are just curious what others do when they reach a level of good managed pain levels.

Sorry to hear about your wife's situation. I know how rough it can be. Of what I know through my own experience is that there's no cure as of now and we mostly are managing the pain with treatments and meds. Nobody seems to have a handle on why some people get it and some don't. Just how we get it. In the same fashion we don't know how to get rid of it completely but only how to treat it.
Every doctor that examines me comes to the same conclusion. 'The only thing that they can do at this point is manage my pain with meds'.
Good luck to you both.... :grouphug:

I am very happy to hear that your wife's pain is being so well managed. It's really up to the individual to decide where to go at this point. There is no cure...but remission is possible. Since she has only had this for a (relatively speaking) short time remission is far more likely for her than for those who have had this a long time. Of course, she needs to really weigh the risks of the various treatments...but it may very well be worth it for her to continue aggressively treating this with either blocks or ketamine in combination with continued physical therapy to keep that hand moving. At the very least I would strongly recommend the continued physical therapy. Her pain levels sound like they are low enough that she should be able to do this and gradually, over time, regain the full use of her hand and perhaps go into remission.

If further aggressive treatment is the way she wants to go, then you need to find a new doctor as quickly as possible who is willing to work with her on this. No sense to keep going back to the same one if he says there is nothing more that he can do for her besides managing the meds if you are looking for more. There's no guarantee, however, that you will find someone who is willing to do more (I don't know the specifics of your wife's case and medical history).

But if nothing else...definitely keep her going with physical therapy for her hand. This doesn't mean that you necessarily have to go to a physical therapist the whole time (you may only be allowed so many visits) but there should be exercises she can do each and every day to improve the function in her and.

Good luck to both of you...I sincerely hope that she is able to get back full function in her hand and that the pain continues to be well managed.

Hi,

I am so sorry to hear about your wifes injury to her hand. My adult daughter developed CRPS resulting from surgery to her hand and arm in
2008. I offer one word of caution. My daughters surgeon suspected right
off the bat she was developling CRPS so within a few weeks he sent her to
a pain doctor who gave her a nerv e block. She did not seem to have
a postive reaction and because of this the pain doctor did not believe she
had CRPS and so much valuable time passed before an nerve conduction
test confirmed CRPS. Thirteen or fourteen months passed before she
received another neve block, the second one helped with some of the pain
but due to the length of time passed it harms her changes.

I am glad her doctor is going to try another block soon. So many doctors
use the prodedure to see if there is reaction and if not thinks the patient does not have CRPS.

Good Luck with the next one.

Joydee :)