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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-25-2011, 06:20 PM   #1
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Waiting for 100% Confirmation

Hello-I am new to this board-but am so thankful I found it. At the begining of 2011 I was told I had a very bad case of tendonitis in my right arm, mostly my wrist and thumb-work related due to repetive motion. I have workaholic tendancys and was always very high energy and a hard worker. I started with my family Dr. who started refering out to specialist. After months of PT, there has been no improvement, then a couple of months ago they decided to try cortisone shots, the first one took the swelling down, the second one left me in so much pain it shoots all the way to my neck, when I went back for my recheck my Orthopedic Dr. says he thinks I have RSD or CRPS. I was shocked and really had no idea what is was. When I researched it I have the majority of the symtoms, some I have had from the very begining. When I go see my DR. I write everything down, I kept telling my family Dr. that it felt like fire was running through my hands, I am guessing he wasn't familar with RSD. Seems like I have atrophy in my right hand now, from wearing a hard brace for so long, over 6 months-I kept telling everyone that it seemed like it was making things worse. I finally-against Dr.'s orders stopped wearing it at home. Looks like I will have to wait a month or so before I can get into a PM Dr.-which is very frustrating. So I do have some questions for some of you very precious people that have been dealing with this for a while.
When I saw my Ortho and he refered my to a pain management Dr.-I asked for some type of pain killer-he said we don't recommend narcotics for RSD-I don't care about narcotics-but there has been at least 4 times when the pain is so bad that I feel like I should go to the emergency room ( I don't because over the years the ER in our town have such a bad reputation that I know I will just sit there and wait and then probably get sent home, I have had several experiences with myself and other family members.) So why won't he give me anything for the pain? I have an RX for Naproxen which barely does anything and only works for mild pain.

I am also wondering about ever going back to work? What have your experiences been, I have a job where I did a lot of fine detailed work with my right hand-very right dominant, then a lot of typing and hand writing. So if my right hand never recovers-what jobs can you do without a right hand?
What should I expect from my first apt with a PM Dr., I have a white coat fear just adding to my anxiety? I am a W/C patient, so I know eventually they will cut me off, I also have hired a lawyer to help.The pain is so bad in my right hand I can't imagine going back at the moment.

So I would like to know what to expect from my first PM apt, should I write all my symtoms down? Any suggestions? I will bring my husband with me for moral support and so he understands what is going on.

I also am wondering about pain levels, I can wake-up in the morning on a scale of 1 to 10 and have a pain level 2 and then for no aparent reason it shoots up to an 8 or 9? Is this normal? Riding in the car sends me through the roof.
Would love some feedback and support. I am a fighter and know that I will make the best of whatever the future holds-I am feeling very confused and frustrated like so many of you.
Thanks for listening-J

 
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Boat Girl (09-25-2011), K_Lana (09-26-2011), Shelbie (09-26-2011), tayden (09-25-2011)
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Old 09-25-2011, 07:09 PM   #2
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Re: Waiting for 100% Confirmation

coffee4j,I was diagnosed with rsd 4 years ago after blowing out my knee.my symtoms started shortly after surgery and continually got worse.Pain management dr.s have no idea how to treat people with RSD,seems the drug free is the way to go,but that is totally wrong!RSD is considerd the most painfull disease a person can have according to mcgill pain scale,I have had my pain level so bad that I considerd suicide,why the dr.s are so against pain meds for RSD is because they dont know enough about it.My advice would be to go online find out if there is an RSD support group in your area,I am in one and the benifits are awesome,you can talk with other people that have it and get information on dr.s who know how to treat it,and support for yourself so you dont feel alone.my group has 12 people with RSD and we all take different pain meds,its weird but everybody is different and everybody handles pain different,what works for one person may not work for another,and that is what the dr.s need to learn so they can treat us corectly.So you need to find a doctor that will listen to you and the level of pain you have so you can get the help you need,nobody deserves to be in pain when theres meds that will help it.Good luck to you I hope you find a PM that is helpfull.

 
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Old 09-26-2011, 05:53 AM   #3
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Re: Waiting for 100% Confirmation

Coffee4J. Welcome.

When you go to the PM dr. the first time, they will look at your arm/hand and ask you a bunch of questions and may want to eventually, but probably not that day, give you a sympathetic nerve block, which, when mine worked were wonderful. I started out with getting those on a weekly basis. Eventually though, my rsd spread and the blocks stopped working. But they do great for many people.

As for drugs/narcotics. I could go on and on! I have yet to find a med that doesn't give me a horrible side effect and works at the same time. My PM is very frustrated with me, I'm sure, but I am also just as frustrated. I just tried a new one last night that kept me up the entire night with my mind running 100 mph. So I can barely function now that it is morning and I've been away for over 24 hrs. But back to the topic.... I noticed way back when, before I was officially diagnosed and before I even say my PM dr., I took one of my oxycodone pills from my surgery (was still in post op period) and while it helped the post -op pain, I found it did absolutely nothing for my burning pain. I remember telling my PT that the burning was out of control and the narcotics didn't even touch it. Later my OS, or someone told me that it doesn't really touch nerve pain. Lyrica, neurontin is usually what is first tried for the burning pain.
As for the comment about pm drs not knowing how to treat CRPS, I disagree. I think it depends on the dr. My PM dr. has been very good and trying to help me find something that will work. I believe he is very knowledgeable, and I am greatful that I was referred to him. There are good PM drs out there.

As for going back to work, I'm a SAHM right now and have been for years. I was planning on going back to work eventually, but right now that is on hold until I can get things where I could actually stand or walk for any period of time. Unfortunately for me, my background is teaching K-3 and that isn't the easiest to do when walking/standing is very hard.

Pain levels for me are constant throughout the day pretty much but vary from day to day by a level or 2. I'm usually around a 7-8 with the getting more frequent 9.

 
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Old 09-26-2011, 09:06 AM   #4
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Re: Waiting for 100% Confirmation

Thank you for the replies-prayers for both of you and your struggles.
I started looking for a support group because I feel like that would be helpful for me, so far I haven't found one-but I am not sure I am looking in the right places. Also waiting to talk to the PM Dr. for confirmation that it is RSD. My Ortho is a really smart guy so I believe his diagnosis is acurate, but he even said to see the PM people and see if they agree. This is what I have so far: Burning like fire, I was trying to describe it to my family and all I could think of was-you know the Wolverine movie when he gets shot full of titanium, that is how my hand and arm feel, there is a point where I get to feeling like removal at the elbow would be a good option-not seriously but that is how bad it gets to hurting. Color variations, speckled-one hand is white the other hand is get, they vary-swelling which is down after the cortisone shot, loss of control-like hold a fork or cup-without any knowledge or feeling I drop them. Weakness. My nails were always beautiful, I went through the growing excessively now the thumb where it orginated is rumpled, lined and ugly. My hands run completely different temperatures, one can be hot while the other is cold, this has been going on from the begining, nothing is consistant though so it often feels like it flares and then goes away. Is this normal.
The other thought I have is maybe it is just really bad tendonitis in the wrist and elbow and maybe on the cortisone shot he hit a nerve? Hard to say. I have had a nerve test and it showed not carpal tunnel, however the weird thing with that was one arm, my good bruised in huge black, yellow, and purple bruises, my bad arm which was poked twice as much showed nothing-no bruising? Does that make sense? Is that a blood flow issue?
Also the lack of healing, I kept getting told you should go back to work in 3 weeks over and over, then another 3 weeks finally my ortho said could be years!
Here's some of my biggest frustration-sorry don't want to be negative but this really hurts a lot. When you try to tell someone what is wrong why you aren't back at work they look at you like you are lying or crazy. I say I may have a disease that has chronic pain issues. My sister who is in health care basically said when I told her I thought I had RSD - that is a rare disease and that I needed more testing then acted like I was making stuff up, it was pretty hurtful. Anyone else have similar experiences? Like I have said I have always been one of those people that works and works and does it all fulltime Mom, dinner homemade and on the table everynight, and fulltime job-that is how the tendonitis got so bad-I don't know when to stop. Anyway people looking at me like I am crazy is not helping and adding to some depression issues.
Hugs-J

 
Old 09-26-2011, 10:04 AM   #5
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Re: Waiting for 100% Confirmation

(((HUGS))) I made a post up awhile ago, you can search my posts...it went something like this. RSD? Yeah, I had that and it was no big deal. I know 2 people who told me that when I was first diagnosed. Well, actually several months after I was diagnosed when it first started to spread. I know that some people get it and they get a block or 2 and it goes away, or at least into hiding. But I have not been so lucky. I had to give up so much in my life, particularly the past 4 mos. I taught karate for years and had to give that up. My whole social life was at that school too. All my best friends. I no longer see them on a daily or weekly or heck monthly basis anymore. My whole social support system gone. So I understand. I used to run miles every day. 4 years ago I was working out 3 hrs a day. Now it takes all I have to walk from my car to my son's football game.
We have to be strong though because it can get to you. There are some days I make it through okay and there are other days I just cry and can't believe how my life has changed. On those days I have to remember that the okay days are near.
I have learned to keep quiet about the rsd/crps except for to a very select few people. Not many can understand unless they are going through it. I get from friends all the time if they see me smile when I say hi...they say to me, "Oh, you must be feeling better." I want to say no I'm not. Just because I smiled at you when I saw you doens't mean that I'm feeling great and the pain is all gone. I've learned to just not reply to that comment and then they get the point, I think, that I'm not all better all of a sudden.
Hang in there.

 
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Old 09-26-2011, 10:27 AM   #6
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Re: Waiting for 100% Confirmation

Sounds very similar-I have always been one to push-push-push-no pain no gain mind set. Your post makes me cry because I totally relate. I was the same work was my social life and my friends-now I hesitate to even speak with them because of the W/C issues-so I have been keeping a distance and all but one or two people don't even bother to call and see how I am doing. Funny how quickly a life can change! Now they have promoted someone else to my position without even talking to me about it.

I never know how I will feel in the morning, sometimes I wake-up and feel good, other days and I know it's a bad day as soon as I move.

The same thing happened to me last year at my son's football game, it took all I had to get up and get dressed and try to look presentable, the whole time I thought I would pass out.

How do you know that it is the RSD spreading, I have an old ankle injury that just started hurting again, it hasn't hurt in years, I hesitate to say anything because I don't want to sound like a nut. I was thinking maybe it was hurting because of my lack of motion at times. Sometimes all I want to do is sit on the couch-TV is my new BFF!!!! I never used to have time for TV.

Very scared about nerve blocks-are they painful? Also scared about medications that cause weight gain, I have already put on some pounds without even trying.

Hugs-J

 
Old 09-26-2011, 01:29 PM   #7
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Re: Waiting for 100% Confirmation

How do you know it is spreading? Mine spread up my leg. It used to be in just my foot and ankle where I also have some issues. In fact, I'll be having ankle surgery in Dec. but it spread after I had to have an emergency surgery on my tibia. It spread up my leg and now is from toes to hip. I didn't know right at first but when I woke up from surgery and the blocks wore off, the pain in my leg was horrific. And this isn't where my surgery was either. THe pain never really went away. It died down, but didn't go away. Then the same things that strted happening to my leg that happened to my ankle. Color changes, hair growth, sensitivity, burning, etc. That's when I knew. The pain just never went away since that block wore off. That was back in March.

Blocks are not bad at all. I had all mine in an office setting with no meds for sedation. It didn't really hurt, but a small ***** at the beginning. Much easier than the side effects from some of these meds I've been on. THey worked much better too.

 
Old 09-27-2011, 09:52 PM   #8
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Re: Waiting for 100% Confirmation

Yes, I was reading about the side effects of some of the medications-like weight gain-yuck! I am already having a struggle with that anyway and I really can't afford to add more pounds! I like to be informed and my own advocate when it comes to stuff like meds that is why I have been reading these boards so much, I guess the frustrating part is waiting to see if the PM Dr. agree's with my ortho that it is RSD, and then if W/C will put up a fight.
Do any of the test they do really confirm RSD 100 percent or is it all subjective? and then also the fear that they may not agree-guess that could be good or bad. Just hate this not knowing part. One thing I have learned is the need to move, I have mad myself walk almost everyday, my arm is still throbbing but my spirits feel up compared to a week ago. Would love to hear from other people and how they confirmed whether or not they have RSD.
J

 
Old 09-28-2011, 03:51 AM   #9
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Re: Waiting for 100% Confirmation

There is no "test" to confirm 100%. There are certain criteria that has to be met. You can probably find that online, but the dr. will go by what he sees and what your symptoms are.

 
Old 11-04-2011, 10:44 PM   #10
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Re: Waiting for 100% Confirmation

So it was confirmed the PM Dr. agreed I do have the RSD. Trying some medications Cymbalta and Neurotin, they are making me feel light headed but instantly stopped the burning and crazy nerve pain. Still have pain from the orginal injury in my thumb and elbow.
Thanks, J

 
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