Dumb question du jour: What does remission look like?
 

Hi everyone.

I am writing on behalf of my husband who was diagnosed with CRPS in Oct/2009 after surgery to repair ulnar and median nerves in his hand.

He had a stellate ganglion block and two brachial plexus blocks, none of which helped except while the anesthetic was in effect. He was on gabapentin, 3600 mg/day, up until New Years when he weaned himself off.

His CRPS symptoms were as follows: 1) extreme pain at the end of one of his surgical scars (he could literally point to it with a pencil) but nowhere else, 2) coloration and temperature changes in his fingers which were also extremely shiny, 3) excessive hair and nail growth on his injured hand, 4) lots of swelling in his hand, fingers and knuckles.

At our last visit to the ortho, I pointed out that the coloration changes have disappeared, the temperature changes are fairly minor, there is very little shininess (is that a word?), he is now virtually pain-free, the swelling is all basically gone except in his knuckles which I fear he will have forever, and the excessive hair and nail growth appear to be going away. I thought these were all good signs but the ortho kind of winced and indicated he felt my husband had moved on to the next stage of CRPS!

We go BACK to the ortho again in a couple of weeks but I wanted to ask the people who REALLY know CRPS (you guys), what exactly does remission look like? Because in my eyes and more importantly, my husbands, he is improving, not getting worse! I posted to this site several months ago and got so much encouraging advice that I wanted to come back to the experts. His symptoms are not completely gone, but if you guys could compare to the way he was at Thanksgiving, it's night and day.

So what do you guys think? Might the ortho be right? We have been fairly happy with him thus far, and he gets big points for diagnosing my husband immediately, but I sure am hoping he's wrong this time.

Thanks in advance, everyone, even if you agree with the ortho. I am hopeful but also a realist!

surgery to repair ulnar and median nerves in his hand.

Why did he need the surgery? What was the cause or reason?
accident/ work related /repetitive?

Another condition that can have some of those similar symptoms is Thoracic Outlet Syndrome. {TOS}
TOS can have what is called double crush or triple crush- the nerve can be impinged at the neck/shoulder area as well as the elbow or the wrist.

We do have a TOS forum if you would like to read more about it.
here is the useful sticky info thread for TOS -
http://neurotalk.psychcentral.com/thread84.html

Dear mjl1261:

I so want to fill your heart and mind with great thoughts and feelings..and say his RSD is gone..although I nor none of us here are Dr's but I am hopeful for you....Although as you realize there is no cure for our disease.. however if caught early enough and treated appropriately there is a much better chance of a remission and or slower progression...It sounds wonderfully encouraging that your husband has reached some type of plateau... but your Dr. may just preparing you in that possibly it could lurk again the same or even worse at the original sight or else where... I believe you should follow your husbands lead in how he is feeling and relish in the moment...Did you possibly pick his ortho's brain as to why he commented as he did??? I am very happy for the signs of good change..It sounds encouraging!!!!!

Hugz and welcome..keep us posted..:grouphug:

Kathy

Why did he need the surgery? What was the cause or reason?
accident/ work related /repetitive?

*******************

He cut both nerves on his table saw. We have gone through 1,000 what-if's since then, none of which changed our circumstances.

Did you possibly pick his ortho's brain as to why he commented as he did???

***********************

I didn't challenge the doctor at the time because my husband is not a positive thinker in general. Picture Eeyore. If the news was bad, I was afraid it would cause a set-back and I want him to enjoy the progress as long as it lasts.

However, he has progressed now to the point where I think I can bring it up to the doctor and ask for a clearer opinion. This ortho recognized the CRPS right away but sent us to a pain management doctor straight out of residency. We liked him and he was well-meaning but he had no clue how to treat CRPS so we have been on our own for the last three months or so. Except for the gabapentin and PT, all of the treatments we have tried are things I have found on the internet.

We are very aware that CRPS can not be cured. I have prayed desperately for remission ever since the diagnosis but only recently realized that we don't know what that looks like, if it can be "partial" or if symptoms do appear to go away in more advanced stages and that we're going along day by day thinking he's improving when he's really getting worse!

I would say if the symptoms seem to fade away, and more important, that he feels much better is surely a sign of remission. However, if symptoms are changing, pain feeling deeper, different, skin color not changing but nails look different your doctor could be correct in the RSD is changing. It changed for my wife who has the disease but her pain changed from electrical shocks to a deep in the bone pain. I have read cases where folks did get much better. Again, if your husband feels much better I'm very glad for the both of you.

Hi mjl1261,

I'm thrilled to hear that your husband is doing so well right now.

I've had RDS in my left foot following a surgery in 2002. I've had my ups and downs and many times where I'm fully functional with minimal pain or other RSD symptoms. Unfortunately just when I think I've got this nasty beast beat it rears its ugly head just to let me know its still there. While traveling last month the RSD flared and jumped over to my right foot putting a halt to all our plans.

As much as I'm inclined to believe in the power of positive thought (it's got me a long way with this) I hate to say that I think your husbands Ortho is right. Most important for your husband and you is to enjoy the good times and maintain that positive outlook. It will also help if your husband can do things that continue to manage the RSD whether he has symptoms or not. Try to avoid his triggers and things that cause him unnessesary stress as much as possible.

I wish you both all the best.

Warm wishes.

MsL

Hi. Normally that type of nerve surgery can take 6-8 months to heal and it sounds like they treated his CRPS early on which can put CRPS in remission. Mine is generalized and I also had a nerve injury with surgery but CRPS was not treated til it was too late. During my course of therapy I did meet a guy with the same history as your husband and his also went into remission. (His swelling went away, pain was minimal, good movement, color changes went away, and got off his meds. He was doing well in PT/OT but still had to prevent repetitive movements with that arm. Unfortunately, he was discharged from therapy so I dont know how he is today.
To my understanding remission is when signs and symptoms go away or are controlled (symptoms subside) on medications.
momof4

I want to thank everyone who has posted here. This has been such a frightening experience and it's been hard to know where to turn.

What I really want is a crystal ball to see what the future holds. I would have enjoyed my Christmas a lot more if I could have seen forward to today -- he is that much better. On a daily basis, I treat him like someone who is not injured. He washes dishes, walks the dogs, and is planning an expansion to our patio -- we'll be doing the work ourselves.

It sounds like the key advice is to remain vigilant, enjoy today, and take tomorrow as it comes. I will do all of those things. Thanks again, from the bottom of my heart.

By the way, I have read many threads with postings from people who improved and others begged to know what they did to get to that point. I want to be one of those who contributes because I know how it feels to be desperate for hope.

As soon as my husband (Randy) was diagnosed, they sent him to a pain manangement guy who was straight out of residency. He prescribed gabapentin, starting out at 300 mg, 3x daily. Randy couldn't tell he was even taking anything. They upped it to 600 mg and eventually 1200 mg 3x daily, still with no affect. By New Years, he was tired of taking all those pills so he weaned himself off. They tried a steroid taper but that also did nothing. As I said above, we went through three nerve blocks that didn't seem to do anything although it's possible that they are part of the reason he's doing so well now.

During that time, he went to PT three times a week.

At home we did (and still do) passive and active movement exercises. We tried hot/cold treatments twice but the cold was just too painful, even just tap water, so we quit those. I've since learned that cold is bad, bad, bad. The doctor also did a steroid injection at the point of his pain which I've also learned is bad, bad, bad. No injections at the site of scar tissue! At that time, his hand was so swollen that most of the stuff just leaked out, so that was pretty much a waste. It was also the limit of what this doctor knew to try so we didn't make any more appointments.

Not being one to just do nothing, I went online to look for more information. I found a guy who had achieved complete remission by following the advice of a doctor in Holland (I think). This website suggests there are two kinds of CRPS -- hot and cold. It recommended 600 mg. of NAC 3 x daily for "cold" CRPS and 50% DMSO cream 5 x daily for "hot" CRPS. Other websites suggested epsom salt baths to reduce swelling.

Randy started on the NAC and a daily 20 minute epsom salt bath (hand and wrist only). We also found some DMSO cream on the internet and ordered that. He only did that once in the evenings though. He also took an ibuprophen 3 x daily and a multivitamin.

He has dropped the epsom salt bath and will stop the NAC when the current bottle is empty. The website says any benefits after 16 weeks are minimal. I believe that within the next few weeks, Randy will not be taking any kind of medicine except the multivitamin.

The website did say that these treatments are for those who are within about six months of the onset of CRPS. This unfortunately leaves out a lot of really wonderful people, but I think I would not hesitate to try these things anyway. None of them requires a prescription - we get the NAC at a health food store. If you decide to do the DMSO, I strongly suggest a 50% mix. I hear the full strength stuff will tear your skin up. The website also recommends a non-addictive anti-depressant but we did not do that.

I hope this helps.

My intent was to include a link to the website but I got an error when trying to post. My email causes the same error, so if anyone wants the Dutch website, email me at MJL1261atYAHOO.COM. I'll be happy to pass it on.