Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-09-2011, 12:27 AM #1
Dubious Dubious is offline
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Originally Posted by RSD_Dan View Post
Hi my name is Dan and I'm a 20 year old male who was in good health until a work related injury followed by a injury playing basketball caused a bad bone bruise and a tear in my illiotibial band. After the doc realized I was in much more pain than I should be and noticed how sensitive my skin had become to touch, he referred me to pain management.

Yesterday I had a sympathetic nerve block done on my L3 vertebrae (feel free to correct me if I'm getting that wrong) and the back pain has become unbearable, they plan on doing 2 more next week but I'm afraid.. From what I've read this isn't always the most effective treatment and the back pain seems to be spreading to my entire lower back, and is quite severe, I can barely bend or twist and riding in a car (even a whole day+ after) is incredibly painful.

Could this be a sign of RSD worsening? And what other treatments are most successful? I am currently on lyrica and endocet, which help somewhat but not entirely.. I also am on anti-anxiety meds which help calm my brain a bit cuz I'm kind of freaking out.

Any suggestions/advice is much appreciated.

-Dan

Have you had an MRI to rule out lumbar disc hernia or other axial pathology?

When you hear stampeeding hoofbeats, think horses not zebras....

I'm not say'in....I'm just say'in...
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Old 04-10-2011, 10:02 PM #2
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Have you had an MRI to rule out lumbar disc hernia or other axial pathology?

When you hear stampeeding hoofbeats, think horses not zebras....

I'm not say'in....I'm just say'in...
I've had 2 MRI's on my knee but none on my back. I will inquire about it to my doc but I doubt my insurance will cover another MRI so soon.
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Old 04-11-2011, 12:48 PM #3
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I've had 2 MRI's on my knee but none on my back. I will inquire about it to my doc but I doubt my insurance will cover another MRI so soon.
Hi Dan,

It all comes down to clinical indications as whether or not your insurance will spring for another MRI or if it's even ecessary. If your exam findings are suggestive of a disc issue, for example in your lower back, then your doc may feel compelled to order a lumbar MRI. It's not so much that your insurance counts how many per your you have and basis a decision on that merit.
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Old 04-12-2011, 12:57 AM #4
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I'm so sorry to hear this. I had a block done on January 31st this year and I now have terrible, severe pain in my entire upper body. It has been a nightmare with things just getting worse and worse and worse. We're still looking for other explanations besides a spread of the CRPS...but I am really scared that CRPS may be the explanation for the new pain...especially after so long with no answers yet. But so far I am hoping I have just had incompetant doctors and that there is another explanation besides CRPS spread.

I really wish I had not let this doc convince me that blocks were the answer. I was doing so well before with meds and physical therapy. Not pain free...but functioning. I'm a stubborn person and will do anything that I need to do to keep that function...but this latest stuff has been a major setback. physical therapy was probably the best thing for me...but without the meds I wouldn't have been able to DO the PT. I was on Lyrica, Mobic, Ultram, and Doxepin along with Lidoderm Patches when I was doing well. Even once I 'finished' physical therapy I still continued to do all the exercises every day at home. It was hard...but totally worth it. I got hurt at work when I was 25 (am now 27) and I am not willing to let this thing get the best of me.

I wouldn't continue the blocks if I were you. I would try the meds, physical therapy, and possibly using a TENS unit and see how those treat you. I've heard good things about Ketamine...but haven't tried it myself so I can't really speak to it. There is so much information here on the board and it's been a great resource for me.

I hope things start looking up for you soon.
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Old 04-10-2011, 10:57 PM #5
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Originally Posted by Jimking View Post
Did you get any relief from the block? It sounds like the block may have injured your back? How long has it been since you were injured from playing ball and work and how long apart from each other? What was you injury at work?
It feels like I've gotten a little relief, but I'm not sure if it's just because they added lyrica and percocet to my laundry list of prescription meds. My injuries happened about a month apart, the work injury occurred on super bowl sunday and the bball injury happened in early march during the NCAA conference championships (I'm a huge sports fanatic). I work in deconstruction for a architectural salvage/antiques company and we were de-constructing an old church that had a lot of nice architectural elements. Anyways some of the windows were broken and there was some ice build up on the stairs, I was carrying about 60lbs of crown molding and slipped on a step and tried to catch myself so I wouldn't drop all the molding and ended up partially tearing my illiotibial band (tendon on the outside of your knee, very thick and tough to tear). I was getting better and re-habbing it and decided a little basketball would be good for me both physically and mentally. I went up for a rebound and collided with a bigger guy than me and fell down right on that leg and re-tore the tendon and also received a bad bone bruise.

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Originally Posted by betsykk View Post
I'm a huge advocate of ketamine infusions...the sooner the better.
I live in the US (NY) and to my knowledge ketamine is tough to obtain or isn't a first option. I will ask my dr about it though as it seems a lot of people say this is very effective.

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Originally Posted by daylilyfan View Post
The fact that you are young, and were diagnosed reasonably fast are on your side.

It sounds like the book 'Break Through Pain' by Shinzen Young may be of help. fmichael recommended it to me years ago... He is one of our most informed forum posters. It has a small book and a CD and is around $20. Shinzen explains how to use Mindfulness Meditation to help with the pain. I have had RSD ten years now, and it has helped me more than anything else has. For some reason, most medications have not helped me much. I think when you first get RSD, it is darned scary, and this book really helped me take the fear away from being in pain.

Juli
Thank you Juli for the reading suggestion, I will try to pick it up but my funds are quite tight right now with all these medical procedures, dr's appts, and prescriptions. Not to mention bills and rent.
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Originally Posted by SandyRI View Post
Hey Dan,

Anytime you feel those "freaking out" and "afraid" emotions it's time for a 2nd opinion. If you don't feel right about a treatment or procedure, take a time out and try to get to another doc. I think repeated SGB may have caused my RSD to spread to my right leg. But I will never know for sure.

The RSDSA has a link to board certified anesthesiologists and PM docs. Jim Broatch (the Director of the RSDSA) also is maintaining a list of ketamine docs. Do your best to get to highest quality PM center in your area.

This is a good place to start your search for another doc:

RSDS.org also has a ton of other great info on CRPS. Also - if this is a work related injury, make sure that you have a lawyer. Worker's Comp can be a real hassle.

Good luck and keep us posted. XOXOX Sandy
I don't want to go after worker's comp as I work for a family business that is rapidly expanding and can't afford to deal with that hassle. My mother (partial owner) is paying me under the table and helping out a lot.

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Originally Posted by Teresa Marie View Post
Hi Dan

Having been diagnosed with RSD almost 6 years ago (feels like 100) the one thing I've learned is that when the pain tries to overwhelm me it's time to stop the cycle. One of the other replies mentioned Mindfulness Meditation. Let me tell you that above all the meds, docs, and procedures this type of meditation has saved my life. Getting to the point where you are, you need to get in touch with yourself. As someone else said, when it doesn't feel right, it isn't. RUN.

Getting diagnosed early is critical. I had nerve blocks done on both my ankles and it was a nightmare--won't go into that now. See if you can get someone to mix up a batch of ketamine and amytriptaline cream to put on your back. Or if that doesn't work, try lidocaine patches. These both are topical.

Please let us know how you are doing. I look back on that first few months and remember how scared I was. We are all here to help.

Teresa Marie
I would love to find a batch of ketamine as I have tried it twice in low doses recreationally and it was very pleasurable, and I have read about it's effects on the NMDA receptors which seem could be the issue. I have lidocaine from an old injury and have been using that with some help.

-------

Unfortunately I used to have an opiate problem after a car accident last summer (which hurt the same knee, opposite side of the knee though and the kneecap). I was prescribed percocet 10's for 2 months and the dr did not ween me off at all and I started withdrawing badly (and was still having knee pain anyways) so I turned to a friend who could get some roxicodone and headed down a slipperly slope.

I went to rehab in Calif and really turned my life around and got myself into incredibly good shape and continued that when I got back home to NY. That's why this injury has been so frustrating as it has killed my physicality. I also have no desire to be an opiate addict again but my tolerance is so high that I have to take the maximum prescribed dose or more just for pain relief as it seems to be the most effective pain reliever for me at this point. But honestly I'd rather be on them than experience this raw gnawing burning pain. At least on them I can walk around without too much pain. Although lyrica seems to help or at least the mix of the two with anti-anxiety meds.


This seems to be at least a percentage of a mental issue, as I can have sex in a couple positions that don't hurt and when I'm doing it (or receiving fellatio) the pain is almost non-existent or only a 2-3 instead of the usual 6-8 (that's including meds). Thankfully I have an amazing girlfriend who is an angel and is really helping me through this.


Sorry for rambling I'm just very confused and a little scared as I really want to get back to the gym and working physically as that's 75% of my work duties.

-Dan
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Old 04-11-2011, 07:32 PM #6
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So sorry for what you are going through....

I have a 20 year old daughter. it sucks that you are faced with this are your age. on the other hand, remission is more likely when you are young and when it has been caught early.

the street version of k may not give you the same benefits as the k that's administered by a medical facility. You should be REAL careful thinking that you can duplicate the effects...the dosages need to be titrated at a certain rate over a certain period of time. And side effects can be nasty, I get terribly nauseous without Zofran added to my IV. in addition, the most effective treatments have been demonstrated to be the multiple day protocols. For instance, I started out at 10 days in a row. You really should have good medical care when doing a drug like k for that long...


Most of us have experienced arrogant, egotistical docs who don't listen to us and don't care about our pain. Try to bring someone with you to your appointments for support - a parent or a sibling or a dependable friend.

The RSDSA has a list of pain Mgmt doc on their website. Go to RSDS.org. I really hope you get the help that you need quickly. keep in touch....

Good luck, Sandy
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