It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Awaiting diagnosis, could this be RSD/CPRS?


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 10-16-2013, 12:00 AM   #1
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Question Awaiting diagnosis, could this be RSD/CPRS?

My story is quite a long one, one that would take more than this post to fully describe. So I will do my best to give a brief descriptions of it. Due to an occupational injury/injuries, in the last 2 years I have undergone 3 hand surgeries. 2 trigger finger releases on my left hand, Dequervains release on my right, and LRTI basal joint arthroplasty also on the right. I had your usual post surgical complications with all my surgeries, pain and stiffness. But after going through PT I was able to gain back most of the function in my hands.

My last surgery 6 months ago was the biggest (LRTI basal joint arthroplasty) and so for several months after I was very one handed. My left hand had to overcompensate for the right. Then about 3 months ago my left hand started to hurt again and I assumed perhaps it was due to the overuse, but when it got more painful I mentioned it to my orthopedic doctor. However, after an X-ray, MRI, and nerve conduction test my doctor has not been able to diagnose the problem.

Here's where I stand today. My left thumb, index, and ring fingers feel numb, tingly, and hypersensitive to the touch. The best way I can think of to describe it is to say it feels like my hand has a nasty sinus cold, like its all plugged up with the pain radiating out from a central location. There are somedays that the pain is so severe it brings me to tears. And the hypersensitivity and pins and needles sensation is basically 24/7. All of this is the distribution on the median nerve. But my nerve test showed no neuropathy of the median nerve. It did show some mild changes in the ulnar nerve but my worst symptoms are in an area not supplied by that nerve. I just don't understand how you can have such severe symptoms but not have any test show that anything is wrong.

Could this be CRPS? I did have surgery on that hand, but it was a year and a half ago, and that hand felt fine until a few months ago. So if it is CRPS I don't know what could have triggered it.

None of this makes sense. I feel these symptoms, even though my doctor cannot diagnosis it they are very real, and insanely painful. Since my ortho doc cannot diagnose it, he has referred me to a chronic pain management clinic for evaluation. I don't know what these people will say, but going there is basically my last resort to finding some answers hopefully.

Last edited by Greengal04; 10-18-2013 at 12:16 PM.

 
Reply With Quote
The following user gives a hug of support to Greengal04:
Kelly0514 (10-22-2013)
Sponsors Lightbulb
   
Old 10-18-2013, 11:49 AM   #2
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Welll, thanks anyway. I know my story is complicated and I didn't figure I'd get many responses if any. But I thought I'd try anyway. Hopefully the people at the chronic pain management clinic can help me figure out what my orthopedic doctor couldn't. I can't stand the thought of living in this tear inducing pain and never being able to do anything to change that.

Last edited by Greengal04; 10-18-2013 at 11:50 AM.

 
Reply With Quote
Old 10-20-2013, 01:06 PM   #3
jewlz67
Senior Member
(female)
 
jewlz67's Avatar
 
Join Date: Jul 2012
Location: Griffith, In US
Posts: 271
jewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

I'm sorry for the delay in you getting a response, I just saw this post today. It does sound like RSD, unfortunately. Even though it has been a while since the surgery, the simplest things can cause RSD. There are people who have got RSD by just having an IV put in. I'm glad you are going to see a pain management doctor. They are the ones who are usually more knowledgeable about it. What I would do if I were you, learn as much as you can about RSD. The more you know, the better off you are!!! Do not ice your hand...AT ALL!!!! Ice will make it worse. Try, as much as you are able to tolerate without overdoing it, to move your hand and fingers. I know it's painful to do it but it's important to keep mobility in your hand. You don't want those muscles to freeze up on you!

 
Reply With Quote
Old 10-21-2013, 07:12 PM   #4
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Thank you for your response!

I've been dealing with hand problems now for almost 3 years now. After 3 hand surgeries I think most people, including my orthopedic doctor, don't believe me when I tell them I'm still suffering. And having no tests that the ortho doc does explain anything only makes it worse. I'm not faking or exaggerating, my pain is real, the tingling and burning is real. I just hope that this osteopathic (chronic pain doc) actually tries to figure it out and I'm not being sent there just to be shown how to "live with it."

Thanks again for taking the time to reply.

 
Reply With Quote
Old 10-22-2013, 07:18 AM   #5
jewlz67
Senior Member
(female)
 
jewlz67's Avatar
 
Join Date: Jul 2012
Location: Griffith, In US
Posts: 271
jewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

It, unfortunately, sounds like RSD. Did you bring that up to your ortho? It's really sad to say how many doctors aren't knowledgeable about RSD. It's really sad actually. What you have described sounds just like RSD...especially the tingling and burning. I totally believe you about the pain. Doctors, when they don't have a clue, like to accuse of faking the pain or being a malingerer. I have only been dealing with this for about a year and a half and already, I have learned things that my doctor has just blown off. Like I said before, the best thing you can do for yourself is to be informed. When I was diagnosed, I asked my doctor if she had any information about it that she could give me. She told me that I could just look it up on the internet. Really!!! Here is a doctor who deals with this on a daily basis and she doesn't have any information that she can give me on it! I am trying right now to start a support group for people in my area. I started a ******** page, the page name is RSD Northern Indiana. You can check it out if you want to. Anyways, I'm trying to make it a page to where people can ask questions, vent, or just communicate with others in the same boat. I have been putting out a question of the day for people to answer. I just started the page so it's very small for now. I'm also trying to start a support group for people in my area. So many of us feel isolated and feel like nobody understands. They think because we "look" fine, that we aren't really sick.
Anyways, don't be surprised that when you go to this new doctor, that they are going to try to help you to "live" with the pain. All they can do with RSD is try to find what drugs or treatments they can do to help lighten up the pain. I have never had the pain completely taken away but the meds I take do take some of the edge off the pain. I take Gabapentin and that helps TREMENDOUSLY for me for the tingling pain. They also prescribe Lyrica for it. One thing you will find is what may work for one person, may not work for you, and vice versa.
Hope this helps you out some. I will try to keep watching for your posts and keep me informed on how your appointment goes. I will be keeping you in my prayers.

 
Reply With Quote
The Following User Says Thank You to jewlz67 For This Useful Post:
Greengal04 (10-23-2013)
Old 10-30-2013, 01:03 PM   #6
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

After waiting almost a month for the appointment with the chronic pain clinic, I had the first of several appointment in my pain evaluation yesterday. The doctor I saw does think I have CRPS. He did a test called thermography and found that my left hand is several degrees colder than the right, that combined with the burning nerve pain, hypersensitivety, and numbness made him think it was.

I have a few more appointments with other practitioners there tomorrow to complete the evaluation. But then the hard part is figuring out how to treat this. From all the info the doctor gave me yesterday it sound like managing and treating this will be complicated. He gave me a prescription for gabapentin to start, and then mentioned things like ganglion nerve block, biofeedback, and different kinds of therapy. Add to which all of this is attached to a workers comp claim, so before I can even start the treatment process I have to wait for the workers comp people to review it and hopefully authorize it.

I'm glad to finally possibly have a diagnosis for all of this, but now I am once again playing the hurry up and wait game which is just awful when you're in severe pain. Oh we'll, what can I do? One step at a time I guess.

Last edited by Greengal04; 10-30-2013 at 01:04 PM.

 
Reply With Quote
Old 10-31-2013, 11:33 AM   #7
jewlz67
Senior Member
(female)
 
jewlz67's Avatar
 
Join Date: Jul 2012
Location: Griffith, In US
Posts: 271
jewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB Userjewlz67 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

I TOTALLY understand your frustration! Mine is a work comp claim as well and it has been one frustration after the other! If they deny you treatment, get an attorney! I ended up having to get one because they did try to deny some treatments. I'm glad they started you on the Gabapentin. I know it has helped me out! I know of others on here who have had success in the treatments that you have mentioned. Unfortunately, the only thing that those of us with RSD/CRPS can do is hope to find the right combination of treatment to help relieve pain. There is no cure and no gaurenteed, if you try this, you will feel better. All of us are different. What works for me may not work for you. Try not to get frustrated, I know, easier said than done! Stress is a big trigger for flare ups so you have to watch your stress levels. I hope they can find a treatment plan that works for you.

 
Reply With Quote
Old 11-07-2013, 12:22 PM   #8
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

As you know, I was recently diagnosed with CRPS. The pain management doctor gave me Gabapentin and Amatryptaline, which I thought was working because for a whole week I had almost no pain, which was wonderful. However, yesterday all my symptoms came roaring back in full force and even the Gabapentin doesn't seem to be helping it much. How could I only get 1 week of relief? Was that 1 week just a lucky fluke and not the Gabapentin at all?

I'm just really sure what to do at this point. My doctor wants to try a sympathetic nerve block, but I'll have to wait a while for that because all of this is attached to a workers comp claim and the CRPS has not been allowed on my claim yet. It will take sometime for that to happen. In the mean time I am just trying to figure what I can do to get by. I was so happy when I had that good week after starting the Gabapentin, and to have the symptoms come roaring back is so very disheartening.

 
Reply With Quote
Old 11-07-2013, 10:29 PM   #9
Flaminghands
Junior Member
(male)
 
Join Date: Sep 2011
Location: Arizona
Posts: 11
Flaminghands HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Greengal04, I think u have found what is going to work for you. I had a similar experience as you. What dosages are u taking?

Your doctor will need to increase the dosage of both medications up to the maximal dosage allowed as well as you being able to tolerate the side effects. You will have to be a little patient and give the medications at least 6weeks to work. It may seem like it is not working for a while but after a month or two I think you are going to be content with the results.

 
Reply With Quote
Old 11-07-2013, 11:09 PM   #10
Greengal04
Member
(female)
 
Join Date: Feb 2013
Location: Olympia, WA
Posts: 70
Greengal04 HB UserGreengal04 HB UserGreengal04 HB UserGreengal04 HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Quote:
Originally Posted by Flaminghands View Post
Greengal04, I think u have found what is going to work for you. I had a similar experience as you. What dosages are u taking?

Your doctor will need to increase the dosage of both medications up to the maximal dosage allowed as well as you being able to tolerate the side effects. You will have to be a little patient and give the medications at least 6weeks to work. It may seem like it is not working for a while but after a month or two I think you are going to be content with the results.
I am taking 1 300mg tab 3 times a day for a total of 900mg a day of the Gabapentin and 50mg of the Amatryptaline at night so I can sleep. Like I said, it appeared to be working until I had a full on relapse yesterday. Is it common for that to happen, for you to feel good after starting the meds and then to have a relapse soon after?

I also have another med related question about the Gabapentin. Have any of you experienced weight gain with it? In the 2 weeks I've been on it I've gained 6 pounds and I know it's not for other reasons because I stick to a very specific diet since I also have Crohn's disease. I eat well and stay active, so I can't think of any other season I could have gained that weight in 2 weeks. If Gabapentin does cause weight gain does that continue, am I just going to keep gaining weight as long as I'm on it?

Last edited by Greengal04; 11-07-2013 at 11:12 PM.

 
Reply With Quote
Old 11-08-2013, 04:33 PM   #11
Flaminghands
Junior Member
(male)
 
Join Date: Sep 2011
Location: Arizona
Posts: 11
Flaminghands HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Those are just starter dosages for both medications so that is probably why u had a rebound of your symptoms. You are going to need a much higher dosage in order for you to get your symptoms under control. And both of those medications are known to cause weight gain especially the amitriptyline. It makes you eat 24/7. I switched to Nortriptyline and that stopped the weight problem. You can ask your doctor about Lyrica for the nerve pain but some people experience weight gain with that too. Guess right now you have to pick your poison – weight gain or pain control.

 
Reply With Quote
Old 11-10-2013, 04:40 PM   #12
Flaminghands
Junior Member
(male)
 
Join Date: Sep 2011
Location: Arizona
Posts: 11
Flaminghands HB User
Re: Awaiting diagnosis, could this be RSD/CPRS?

Those are just starter dosages for both medications so that is probably why u had a rebound of your symptoms. You are going to need a much higher dosage in order for you to get your symptoms under control. And both of those medications are known to cause weight gain especially the amitriptyline. It makes you eat 24/7. I switched to Nortriptyline and that stopped the weight problem. You can ask your doctor about Lyrica for the nerve pain but some people experience weight gain with that too. Guess you have to pick your poison – weight gain or chronic pain

 
Reply With Quote
Reply Reply




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 12:26 AM.





Site owned and operated by HealthBoards.com™
© 1998-2018 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!