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Possible CRPS and the fight against pain.

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Old 04-26-2015, 07:28 PM   #1
guitarguy
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Default Possible CRPS and the fight against pain.

Hello all,

In 2007 I had ulnar entrapment surgery of the left elbow. The surgery was successful in that the numbness and tingling in my fingers resolved, within 2 weeks after surgery pain began to build in this arm around the surgery site, the forearm and the hand. Along with this came tingling and then pain in my right foot, sometimes in all limbs but mostly the left arm where I had surgery and the right foot. Pain got so bad to where it became difficult to function, walk, etc. My surgeon said he had no idea and sent me on my way.

So now I started a quest to find why I had hellish pain in these limbs, along with pins and needles, skin color changes, skin mottling and temperature changes.

One doctor said it was Lyme disease and I ended up on antibiotics for 2 plus years. I was also diagnosed with MGUS which is a blood cell disorder which can cause neuropathic pain as well.

But after all these fruitless searches, it seems like CRPS to me.

So hear I am off and on taking opiates for chronic pain
I have read that CRPS and related pain is the highest on the chronic pain scale and I believe it, since the pain has left me crying at times, curled up in a ball, and at times feeling I could black out.

Opiates have done the best for my pain but I hate the side effects. Strenuous exercise also helps along with very hot water, but not always. None of these help when I am working at my desk or trying to sleep, so only opiates have helped give me a life back. I am not trying a natural plant called Kratom which is helping some.

Does anyone have advice on where to get a diagnosis of CRPS and treatment? I hear there are specific IV treatments that can help. I hate living on pain pills, but right now I have not found an alternative. I have tried every alternative you can imagine. My weight is good, diet is great, I am a health nut, tried Asian medicine, massage, you name it.

Looking for thoughts or suggestions.

Thanks,
Rich
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Old 04-26-2015, 09:58 PM   #2
Enna70
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Hey; I was diagnosed by a Neurologist; I wish I would say that all that you are doing plus what I, we are doing is going to be enough...some days it works and you will be on top of the world; other days, what has been working just doesn't and you feel like an anvil is falling and you just can't step to one side or the other....here is a great support;
We understand; we listen and sometimes we give our stories; It's a crazy thing this monster living within us;
Today, mine seems to be resting after a week of mischief;
Keep up the fight......
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Old 04-27-2015, 03:21 PM   #3
EnglishDave
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Hi Rich,
We have a very active and informative CRPS Forum here

http://neurotalk.psychcentral.com/forum21.html

Where the wonderful Members will make you welcome and be able to give you advice. So sorry you are dealing with these frustrations.

Dave.
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Eroded by Time's rivers
To the shapes we now possess.

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Old 04-27-2015, 03:38 PM   #4
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Welcome guitarguy.
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Old 04-28-2015, 08:27 AM   #5
spiritscript
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Rich,

Yes yes yes!!! You could almost be my twin!
Where to get the diagnosis? Good question! From all I've read it would be Drexel University Neurology in Philadelphia, PA or Cleveland Clinic in Ohio. There may be more places that I'm not aware of. I will bet dollars to donuts that you DO have RSD/CRPS. Whatever you do, do NOT have ANYMORE surgery or ANY injections/procedures! Those things WILL make it worse! I'm STILL waiting for my diagnosis but I believe my current spine/pain doctor now believes I have it. He has refused ANY injections after he did one. I've had others by idiot PM and they got rid of me because I told them the injections were burning down my leg And then they were NASTY to me as well. I am losing my wonderful spine/pain doctor at least for a while because I lost my half decent ins. from a bitter divorce and courts not caring. I go to my spine doctor tomorrow for my last script of Percocet, which only takes the edge off. But I am scared to death of the pain next month! MedicAID is a joke for this around my area. I got my SSI disability in only a few weeks years ago when I sent them photos of my hand. I lost my job, cake business and car because of all this burning pain! And we have NO water therapy AT ALL even 20 miles away! Mine never went away after a minor same day surgery in 2012 to have my hemorrhiods removed (sorry). One diagnosis after another! And now I look like a freak! Before I knew any better about surgery I had a root canal that made my whole mouth on fire! The ins. co. thought it was because I had a lot of dental work over the years and would ONLY pay to get my teeth extracted!!! Nothing else! OMG! So I thought that would stop this burning pain. WRONG! It is now worse and so bad that I can't even wear the dentures and eat properly!!!


Quote:
Originally Posted by guitarguy View Post
Hello all,

In 2007 I had ulnar entrapment surgery of the left elbow. The surgery was successful in that the numbness and tingling in my fingers resolved, within 2 weeks after surgery pain began to build in this arm around the surgery site, the forearm and the hand. Along with this came tingling and then pain in my right foot, sometimes in all limbs but mostly the left arm where I had surgery and the right foot. Pain got so bad to where it became difficult to function, walk, etc. My surgeon said he had no idea and sent me on my way.

So now I started a quest to find why I had hellish pain in these limbs, along with pins and needles, skin color changes, skin mottling and temperature changes.

One doctor said it was Lyme disease and I ended up on antibiotics for 2 plus years. I was also diagnosed with MGUS which is a blood cell disorder which can cause neuropathic pain as well.

But after all these fruitless searches, it seems like CRPS to me.

So hear I am off and on taking opiates for chronic pain
I have read that CRPS and related pain is the highest on the chronic pain scale and I believe it, since the pain has left me crying at times, curled up in a ball, and at times feeling I could black out.

Opiates have done the best for my pain but I hate the side effects. Strenuous exercise also helps along with very hot water, but not always. None of these help when I am working at my desk or trying to sleep, so only opiates have helped give me a life back. I am not trying a natural plant called Kratom which is helping some.

Does anyone have advice on where to get a diagnosis of CRPS and treatment? I hear there are specific IV treatments that can help. I hate living on pain pills, but right now I have not found an alternative. I have tried every alternative you can imagine. My weight is good, diet is great, I am a health nut, tried Asian medicine, massage, you name it.

Looking for thoughts or suggestions.

Thanks,
Rich
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Old 04-28-2015, 05:09 PM   #6
Littlepaw
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Hello Guitarguy,

So sorry to hear your story. There is a starting list of CRPS doctors at http://crpspartnersinpain.com/?page_id=1436
It sounds like you are doing many of the right things to care for yourself. Keep up the good work. I do advocate being careful about your exercises in that some repetitive actions can aggravate a nerve and cause neuritis. I thought I had CRPS spread up my leg but it was in fact a neuritis caused by the recumbent bike and improved when I changed my routine. One less thing to worry about is good. Also Are they sure you didn't re-entrap at the surgical site? You wouldn't be the first...

I hope you find relief soon,
Littlepaw
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Old 04-28-2015, 05:30 PM   #7
Jules61
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I was diagnosed at a pain clinic without having to travel anywhere.
RDSHope and RSDSA are additional resources. Best wishes.


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Old 04-28-2015, 07:59 PM   #8
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Hi guitarguy, I have CRPS 6 years ago, mi life was broken, now I have more complications for bad doctors in my way. But there is one Dr. in Monterrey Mexico, this Dr, was recommend for Dr. Antony Kikcpayrick of spacialust in CRPS in Miami. I was treatment with Ketamine and now I have more quality life. I can to do Fisioteraphy, dont cant because my legs have atrphias, etc. This Dr. See people of the New York, New Zealand, Melbourne. Now he has a new treatment autoryzad for FDA the medicament is neridronato de calcium., in Eurpean used 3 years ago with results magnificience. My life is another , Have with CRPS, BUT I HAVE IMORE QUALITY LIFE.


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Old 04-28-2015, 08:05 PM   #9
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In Monterrey Mexico there is the best Dr. Of CRPS, he treatment with ketamine and the new medicament Neridronato of Calcium, this use in Europan in Milan Italy 4 years ago. In Usa THE fda authorize . Please my life is another, see the information, in Miami with the Dr. Anthony KirckPatric.


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Old 04-29-2015, 08:46 AM   #10
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Welcome macorcobo.
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