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 04-19-2007, 08:25 AM #1
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Question Time to accept dx?

Hello All,

My physiatrist has been trying to convince me that I have RSD for almost a year...as short as I can make it: I had a cervical fusion done in 2000. Was fine, and then took a fall on the ice a few years after that, put out my hand to brace myself. I couldn't turn my head the next day. Over the past 2 years, I have had reoccuring "bouts", in the past several months it has been continuous. My symptoms in a nut shell are burning, stabbing pain over my scapula [the spasms in my trapezius muscle are horrendous!] Inflamation in my joints, shoulder and neck...pain radiates down my hand, my hand is blue [although with manipulation, I can get it "normal"] sometimes red and swollen...always colder than the other....sometimes, my dh will walk by me and try and touch my shoulder area and I jump.
I have had: shoulder arthrograms with MRI, cervical and upper thorasic MRI's as well...all normal. Have done PT [with little relief, seems that a day goes by and the muscles are back to knots] Massage Therapy...have been on a pain contract for Vicodin for over a year as well [am very good about keeping my dosages way down], have done trigger point injections... I go back to the doc's today, and I believe the next step is for nerve blocks-which I will do, because the pain is unbearable...also seems to be [newly] on my left side as well--a kind of mirror...but I feel the pain mostly in my scapular area [those trapezius muscles] when I try to turn my head...although for the past several days I don't even have to move to feel pain. Oh yeah, a few weeks ago I had a "flare up", and the doc put me on steroids, which did seem to help...for the short term.
So--after all my blathering, do you, who know this disorder far better than I, think it is time for me to "suck it up" and deal? Or should I be searching for other answers?

Thank you so much!
As my grandmother always said...Count your blessings!
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Old 04-19-2007, 08:55 AM #2
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Default Hi,

Welcome to the group. I'm glad you found it, you will learn a lot here.

I just wanted to say you might want to check on the diagnoses of Thoracic Outlet Syndrome. It sounds like you might be dealing with this as well as RSD. The symptoms sound like TOS. There is a TOS group here also so you might want to go over to it and learn about it. It is a rough one also. I wanted to say also that TOS doesnot show up on most test. Every once in awhile people will have an EMG that will show nerves being pinched but not always. Usually it takes a TOS Dr. to diagnose TOS.

Like you, I fell and ended up with TOS and RSD. I fell 7 times on meds I couldn't take and always caught myself on the left side. Then before I could get diagnosed I went to a quack Osteopathic Dr. and she popped my bones and brought it over to my right side. Now my right side is the worst.

I hope the blocks help you. They helped me a lot and it usually takes a series of them to do the most good.

My Dear, suck it up isn't something we can do with RSD or TOS. It just doesn't work so don't let that be your belief. You need a lot of help and support to deal with RSD or TOS.

Again, welcome to the group.
Ada
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Old 04-19-2007, 09:16 AM #3
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Default Asked about that one

Ada,
Thank you for your reply. I did ask my doctor about the possibility of TOS [isn't funny, how they make all this money, and yet we still end up doing leg work? ] I can't remember exactly his response, however, it had something to do with the fingers that are affected in my hand, and that he didn't feel it was TOS--hadn't thought of a combo dx. I'll ask him today.
Thanks again!
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Old 04-19-2007, 09:20 AM #4
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Default Hi,

As I said, it's very hard to diagnose and you might want to find a good Neurologist or TOS specialist in your area. It's so hard to diagnose. I just posted about how long it took me to get the TOS diagnoses and it was over 3 years. Don't give up on finding out if that might be it until you are satified with the answer you are getting.

I don't think we saw it in my hands until they started turning colors and my fingers started spasming up. There are symptoms that don't show up right away and everyone has different symptoms.

Good luck,
Ada
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Old 04-19-2007, 10:41 AM #5
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Default Never give up searching for the solution!

Hi count your blessings,
I had to respond to you question about is it time to accept your diagnosis by sharing my story with you.

In 2001 I was diagnosed with rsd type 2 from an ankle sprain. I immediately started nerve blocks and did everything a good rsd patient should do. Every doctor I went to told me to stop searching for a cure and to accept my diagnosis. This was my reality and I needed to go to a pain couselor to help me learned to cope and deal with the fate that was handed to me.

I DID NOT listen to any of them and continued on my search for MY cure. I tried everything I could - HBOT, accupunture, herbology,cranial sacral, applied kiniseiology, my list goes on and on. I was determined to get help somewhere, somehow.

Finally, in 2004 I had to find yet another doctor because mine was no longer going to see patients. I had no idea who to see since I had seen all the rsd/pain doctors in the area so I asked my chiropractor who he would recommend. He told me he had a personal friend who was like a medical detective and that he trusted her. I waited anothe 4 months to get an appt with her and upon exam she said that she thought I didn't have rsd at all but nerves entrapped in my ankle.

I knew what nerves they were because I had told doctors for 4 yrs that my pain spread on the path of 2 nerves beginning at the tendon I tore and the 2 ligaments but none of them would pursue this theory of mine. She told me I was her 8 patient in her career that was misdiagnosed with RSD and really had nerve entrapment. Her plan was to proove this and get a surgeon to operate.

Before my next appt, I went back to my chiropractor and told him. He said if it was trapped nerves he could do some manipulations to the bones in my foot and maybe it would help.

He did that and within 10 days my pain(which had spread up my entire left side to my face, nose and ear and my other leg) was gone!!! Those 10 days were not pleasant - my leg was twitching and jerking and spasming but I awoke to a no pain.

Since then it took me almost 2 yrs of intense rehab but I am finally back to being totally normal. I lift weights and even run on a treadmill! I began working again full time in december.

So.....
My answer to your question is NEVER STOP SEARCHING FOR A CURE! If I had accepted my diagnosis of RSD and stopped trying where would I be now???

Certainly not where I am.

If I could find the miracle cure then why can't you?

Check out the the mensana clinic and dr nelson handler. He has written a book on rsd being misdiagnosed as nerve entrapment syndromes. He did a study where 71% of the patients diagnosed with RSD really had nerve entrapments.

Peace and hope to you,
Lisa
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Old 04-19-2007, 01:10 PM #6
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Hi CB,

You never know, you might have something other than RSD; there are a host of conditions rather similar. The problem there is that it costs so much in time and money to pursue all possible avenues. Not too many of us have enough of either. I hope you can find as accurate a diagnosis as possible and, for your sake, sincerely hope it's not RSD. Certainly, keep hoping that the problems are mechanical and therefore fixable.

But Lisa, you didn't find a miracle cure for RSD, did you, because in the end you discovered you didn't have RSD. Good for you to keep plugging away at the medics; but in the end your case was simply one of misdiagnosis and, luckily for you, the real condition was fixable. Hardly a miracle cure for RSD, though.

And I completely understand what you felt, because I personally still feel my own problems may be due to mechanical problem. Like you, I feel the centre of the pain in the exact same place I felt it when I broke my arm.

But they've done all the tests I can either afford or persuade them to do (government health service, good but slow, and not imaginative...) and there is still a lingering suspicion in a corner of my mind that what's wrong with me isn't RSD, but nerve entrapment - I don't, for example, get rashes or cyanosis, although in the last year my hand and arm have gone a dry grey rather than the previous hot red.

They offered me an arthroscopy, to clean up the break site and peer around - but OMG, look at the statistics on how many people get RSD after an arthroscopy. Seriously scary. I'm lucky, my RSD isn't nearly as bad as everyone else's, so I decided to stick with the devil I know, since Neurontin really works well for me, keeping the pain at a just tolerable level. It's 3 years now, and hasn't spread (yet...). Very difficult decision, in view of the fact that it is possible that an arthroscopy just might fix my left arm problems. Oh well.

The thing is, Lisa, there really are people with actual RSD and while you may be right that some of us could eventually discover we've been misdiagnosed, it does *not* sound to me like 71% of this particular forum has nerve entrapment rather than RSD...

Still, CB, no harm in pursuing every avenue... you could start by getting tested for Lyme disease, rather similar and often completely overlooked. I know your problems began with a physical injury, but just a thought.

all the best
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Old 04-19-2007, 02:47 PM #7
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I think an evaluation with an expert chiro or 2 should be on most peoples list with any non life threatening condition.
Just to make sure all is in alignment and to rule out possibles of a nerve entrapment.

I wish I would have known more about chiropractic and been more open to trying one at the first sign of RSI and shoulder troubles.

Of course I wouldn't ever just go to any DC - I would search around for a very good one that I felt confidant and comfortable with.
Hope fully the one I have will stay around for a long time.

But it isn't a quick fix - for me chronic RSI/TOS and combined with hypermobility, I manage to get something "out" every month.
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Old 04-20-2007, 09:31 AM #8
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Default reply to artist

I am not trying to say that 71% of this forum has nerve entrapment(that was one of hendler's studies) - the message I'm trying to pass along is that SOMETIMES there are other reasons for the symptoms of rsd.

Sometimes these causes can be cured. No they aren't miracle cures, just solutions to fixable problems that doctors don't seem to want to look into and that is fundamentally WRONG.

My message is to keep looking for each person's own individual cure to what is causing they're symptoms. Nerve entrapment syndromes are one of the things that can mimic rsd and should be ruled out before getting to the rsd diagnosis. TOS, brachial plexus are others and I'm sure there are more.

The problem is that this is not happening. Doctor's are too quick to diagnose and give up the pursuit of finding the real reasons. People tend to believe what the doctor says and their lives are forever changed by bad advice.

So it's up to us to keep trying to get answers and not let the doctor's pigeon hole us into giving up hope of getting better.

My message is to NEVER GIVE UP HOPE OR TRYING TO FIND YOUR CURE.
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Old 04-20-2007, 12:09 PM #9
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Hi Lisa,

I completely agree that hope is essential, of course, and that there are a fair few other conditions with similar symptoms. And I agree that misdiagnosis must happen, as you see, I have a 2% suspicion about my own diagnosis.

If one does have RSD, however, I'm not sure how helpful it is to treat it, as an ongoing situation, as if it isn't; though I think in my own case the treatment would be very similar anyway, and I suspect that only surgery would really sort me out, I have a few bone shards still in my wrist area. But I won't personally allow blocks or anything too invasive till I'm either 100% certain or too badly affected.

Should I be dealing with it like this? I don't know the answer, I'm just going with my gut instinct - which has let me down a few times, I can tell you LOL.

BTW, I wouldn't pay much attention to Dr. Hendler's article in the Pan Arab Journal of Neurosurgery, about CRPS Type 1 and misdiagnosis. His 71% is of 38 people in a single study, with Type 1, and he bases much of his premise on two papers, one by Dr. DM Long - on the advisory board of that Journal but hey, so what - written in 1982 (an advocate of sympathectomy if the blocks work!) and the other Dr. R Payne, written in 1986.

He says at the start of that paper that "Before referral to the Mensana Clinic 16/38 patients never received a sympathetic block, which is considered one of the essential diagnostic tests needed to confirm the presence of CRPS Type 1" - there's no reference given for that statement, but I couldn't find anything recent to support it. It certainly isn't in the Guidelines, either US or Dutch.

And that's just the beginning, but I'm very tired tonight, that'll do. Frankly, I wasn't just unimpressed by that paper, I think that in view of his very swanky private clinic, well....he's probably got a few Middle Eastern clients - but then, I'm a terrible cynic.

Anyway, you are quite right to urge hope upon us all, I'm very glad to hear you're doing so well now, take care,

all the best
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Old 04-20-2007, 05:13 PM #10
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Default Dr. Lisa mentioned

I thought that the Dr. Lisa mentioned rang a bell with me from something I read a while back about a pain doctor in the news.

I did a search for his name and "arrest"....

Here is the first thing that came up in my search that didn't require a password/signup to a newspaper site to get the info.

"Psychiatrist Accused of Trading Pain Pills for Sex
February 9, 2006 - 8:02am
STEVENSON, Md. (AP) - A Baltimore County psychiatrist who specializes in pain management is facing a suspension of his medical license for allegedly giving pain pills to female patients in exchange for sex.
The Maryland Board of Physicians has scheduled a Feb. 22 hearing on the suspension.

Dr. Nelson Hendler was the founder of the Mensana Clinic in Stevenson. He's also accused of handing out pills without prescriptions and having a romantic relationship with one of his patients.

Hendler was the president-elect of the American Academy of Pain Management but informed the organization last week he was resigning."
--------------------

I went to the Mensana site and read through his paper on CRPS... scanned it quickly.. and it seemed to me it says in one of the charts that you need a positive bone scan to have a diagnosis, as well as saying in the text that you need relief of pain after a sympathetic block to have diagnosis. In all the reading I have done, bone scans are - what - 50% reliable, and many (including me) are not relieved by blocks because our pain is already sympathetically independant. I didn't have a positive bone scan. BUT the doc I saw at Cleveland clinic said so much depended on if you are still using the affected limb (I am) and how soon after onset you get the scan done. Mine was within a few weeks. I have almost ALL the other symptoms though. Hair and nail changes, skin color, temperature, oh, you know the drill. I did notice in the credits on the paper he wrote that he has also writen papers about diagnosing for litigation and workers comp.

He must be an interesting Doctor. Glad I didn't go to him....but maybe I am not his "type?"
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