CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….

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@dmac5

Yes, I should have clarified. Thank you. Chronic Regional Pain Syndrome (CRPS) formally Reflex Sympathetic Dystrophy (RSD)

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@dmac5 I have severe peripheral neuropathy with burning, stabbing, throbbing, contortions, in both feet. I did do Scrambler therapy here in Illinois. I did two rounds of it. First time, I did 10 treatments. Pain went down from an 8 or 9 or 10, to a 5. This lasted about three weeks, and then I did Scrambler Therapy again, 10 more treatments. This time, it did very little. However, I did meet two patients with CRPS who were seriously helped by the Scrambler Therapy. One patient had extreme help in one foot, and not in the other. I think everyone is different, but I do think CRPS patients tend to do well with Scrambler. Best of luck. Lori Renee

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Thank you for all this information – I had never heard of crps before. I had fibro-myalgia and chronic fatigue when I contracted a foreign virus that almost killed me – fm and cf were horrible but crps sounds worse. Peggy

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@lorirenee1

@dmac5 I have severe peripheral neuropathy with burning, stabbing, throbbing, contortions, in both feet. I did do Scrambler therapy here in Illinois. I did two rounds of it. First time, I did 10 treatments. Pain went down from an 8 or 9 or 10, to a 5. This lasted about three weeks, and then I did Scrambler Therapy again, 10 more treatments. This time, it did very little. However, I did meet two patients with CRPS who were seriously helped by the Scrambler Therapy. One patient had extreme help in one foot, and not in the other. I think everyone is different, but I do think CRPS patients tend to do well with Scrambler. Best of luck. Lori Renee

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Thank you. I'm very sorry for your pain.

Scrambler Therapy (ST) is one of the treatments I am looking at for our daughter with Chronic Regiona Pain Syndrome (CRPS) It was formerly (RSD) .

There is a physician in Bonita Springs, FL – Dr. D'Amato who does Scrambler Therapy (ST) He is well respected in the field and I believe he has actually trained some physicians at Mayo. I think Mayo is starting to offer ST but I'm 100% sure. You are right, I'm finding treatment outcomes can vary widely with patients. There is not a one size fits all with neurological issues and many times a combination of therapies.

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@dmac5

Thank you. I'm very sorry for your pain.

Scrambler Therapy (ST) is one of the treatments I am looking at for our daughter with Chronic Regiona Pain Syndrome (CRPS) It was formerly (RSD) .

There is a physician in Bonita Springs, FL – Dr. D'Amato who does Scrambler Therapy (ST) He is well respected in the field and I believe he has actually trained some physicians at Mayo. I think Mayo is starting to offer ST but I'm 100% sure. You are right, I'm finding treatment outcomes can vary widely with patients. There is not a one size fits all with neurological issues and many times a combination of therapies.

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@dmac The biggest thing I learned about ST is that the person doing it should have a lot of experience doing it. The man in Illinois that did my treatment had people come from other states to have him do it. Even people who were not successful doing it in other states, came to him to do it. I also learned from him that Mayo uses the Scrambler more for various trials, and actually does not have many people come there to use it. I have heard of Dr. D'Amato. I think I have read about him. Scrambler was so odd with me. The first group of sessions worked gloriously. The second group, not so much. Please, if you need information, let me know. Best of luck with your daughter. I cannot imagine having your own child suffering. I am so sorry. Again, do not be shy. If you need any information at all, let me know. Lori Renee

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@dmac5

Don't amputate. Surprised how many do not know how to treat this Chronic Pain Disease. Look up Spero Clinic in Fayetteville, Arkansas. Also Scrambler Therapy – Mayo Rochester and Dr. D'Amato in Bonita Springs, FL. Go on YouTube and watch lecture by
Dr. Chopra. Informative. Also articles on links with gut health & MTHFR with CRPS. Sounds like he has been treated mainly for symptoms and whole body, reason behind the CRPS. There's hope.

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I agree to NOT amputate as it might cause even worse symptoms, such as phantom limb pain, which in itself can be like CRPS, as there is pain where it shouldn’t.
It’s due to a trauma or accident, where the brain and the nerve connections don’t talk to each other , when the pain signal is sent to the brain, it then sends a signal back to the supposed painful area in error. There is a mis connect in the misfiring of nerves that aren’t responding correctly.
I had spinal fusion surgery 6 yrs ago, after surgery pain went away, I was left with nonstop, 24/7 nonstop pain in my Right big toe, where it feels like an inflated balloon is ready to pop, or it’s as if someone is standing on my foot 24/7. Even a bed sheet is so painful that I need a sheet lifter to sleep.
I’ve tried most every injection, acupuncture, PT, opioid pain meds. Nothing stops the pain. Gabapentum and Oxycodone provide limited relief. My life has completely changed due to this disease.
NORD- National Organization of Rare Diseases lists CRPS has listed this as a suicide condition due to its so difficult to diagnose and treat, which it can’t. For many we cope and find ways. Some can’t find a way so …..
I have found that MFR has helped change my condition and my life as it’s allowed me to begin to have some quality back to my daily living.
I will continue this discussion tomorrow.
Good luck and don’t give up. It could be worse !!

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@dmac5

Look up Spero Clinic in Fayetteville Arkansas. Dr. Katinka is doing some interesting things. Also, Scrambler therapy. Watch Dr. Chopra's lecture on CRPS via YouTube. There is a link between gut health and CRPS and possible link of MTHFR and CRPS. There is hope.

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Regarding CRPS and gut health, it’s a neurological disease with no known specific cause. Speculation but no definitive answers other than brain and the pain with no cause are not in sync.
Very little research is being done as it’s such a rare condition and big pharma won’t be able to make $$$.
Just my opinion on the lack of research.

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@lorirenee1

@dmac5 I have severe peripheral neuropathy with burning, stabbing, throbbing, contortions, in both feet. I did do Scrambler therapy here in Illinois. I did two rounds of it. First time, I did 10 treatments. Pain went down from an 8 or 9 or 10, to a 5. This lasted about three weeks, and then I did Scrambler Therapy again, 10 more treatments. This time, it did very little. However, I did meet two patients with CRPS who were seriously helped by the Scrambler Therapy. One patient had extreme help in one foot, and not in the other. I think everyone is different, but I do think CRPS patients tend to do well with Scrambler. Best of luck. Lori Renee

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I have had CRPS for over 5 yrs. I have tried pretty much what all of us had tried before- epidermals, lumbar blocks, etc. My disease causes my Right Big toe to feel like an over inflated balloon that’s ready to pop. I tried a Medtronic Spinal Neurostimulator but had it removed after a year as no relief and ineffective. So I had it removed. After trying traditional and alternative medicine, I found Myofascial Release Therapy, or MFR. It has had a profound and positive in my quality of life and has given me hope of living with SOME pain, but not the debilitating pain before. I still need to take pain medications, but my quality of life has been improved beyond expectations.
In fact, I am currently being treated at the Sedona facility Therapy in the Rocks for intensive therapy. In 4 days, therapy has eliminated terrible pain in my feet when I wake up in the morning and foot pain as I’m going to bed, among other positive results that I will discuss at a later date. It’s not cheap but if you’ve tried everything, and you think there’s no hope. Think again. Even if you look in your area for a specially trained MFR therapist, it could make a huge change in your life. Might take several sessions but it’s worth it.
Good luck in finding relief.

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@mlross4508

I have had CRPS for over 5 yrs. I have tried pretty much what all of us had tried before- epidermals, lumbar blocks, etc. My disease causes my Right Big toe to feel like an over inflated balloon that’s ready to pop. I tried a Medtronic Spinal Neurostimulator but had it removed after a year as no relief and ineffective. So I had it removed. After trying traditional and alternative medicine, I found Myofascial Release Therapy, or MFR. It has had a profound and positive in my quality of life and has given me hope of living with SOME pain, but not the debilitating pain before. I still need to take pain medications, but my quality of life has been improved beyond expectations.
In fact, I am currently being treated at the Sedona facility Therapy in the Rocks for intensive therapy. In 4 days, therapy has eliminated terrible pain in my feet when I wake up in the morning and foot pain as I’m going to bed, among other positive results that I will discuss at a later date. It’s not cheap but if you’ve tried everything, and you think there’s no hope. Think again. Even if you look in your area for a specially trained MFR therapist, it could make a huge change in your life. Might take several sessions but it’s worth it.
Good luck in finding relief.

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@mlross4508 I have heard fabulous things about MFR. I do rub my feet on a golf ball daily, but I am sure this is not good enough. You mean business, going to the Sedonna facility. I am so glad you are doing better from this. Thanks for reminding me about it, and God Bless. We never elected to live in pain. What a way to live. Lori Renee

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When my neuropathy first got out of control and 2 of my toes were on fire for over a month, I asked a podiatrist about amputating. She said that amputating doesn't help with neuropathy because the new nerve endings start dying and feeling like they are on fire just as badly as the old ones did – worse as it is that much closer to the brain. So I didn't pursue the amputation idea any further ! Peggy

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I am new to CRPS have it in foot from twisting ankle

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Anyone have full body RSD. I know there are not that many with full body and that there are no Doctors that understand what that means.
I’m looking at a stem cell therapy. Like to do it a Mayo but can’t contact anyone. So I guess it’s going to be Vanderbilt.

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HI @drp985 you may have noticed I moved your post to this existing discussion on CRPS or RSD so that you can see what others have said on this syndrome. Simply click VIEW & REPLY in your email notification to get to your post.

That must be awful to have this affect your whole body.

I thought @mlross4508 @dmac5 and @lorirenee1 have all mentioned CRPS in the past and may be able to offer you support.

Here is a link to the contact information for Mayo: http://mayocl.in/1mtmR63

Back to you @drp985 how have you been treated so far?

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