[blueskies]

Dear listmates,

The reason why I am posting is because I want to help everyone here. I am an occupational therapist and have been a hand therapist for the past three years. I have worked with two cases of CRPS that were triggered by wrist fractures. Since I was able to identify the symptoms early on in therapy and alert their doctors, the outcomes were positive. It saddens me to think that all of you suffer with this problem over the long term.

I came across this board quite by accident through a Google search and saw SandyS's posting to pray for her daughter's recovery from CRPS. At that point, I realized that I should share the information that I have been gathering for the past three months in the hopes that it will help all of you in managing your pain.

I have recently become interested in a field called neurofeedback. In essence, neurofeedback holds up a mirror up to an individual's brainwaves and, through the use of various feedback such as audio or video controls, it allows them to control and actually change the way various parts of their brains operate. After several sessions, it can lead to actual structural changes in the brain, a concept called neuroplasticity. I point you to the latest evidence on Sciencedaily** I can't post links because I'm new here, but if you search Sciencedaily for the term neurofeedback you can read the following two articles:

1) First Direct Evidence of Neuroplastic Changes Following Brainwave Training
2) Mind Control Can Make You A Better Surgeon

With no exaggeration, neurofeedback is changing the lives of many people.

To give you an example, I recently called a woman who lives in California who had dystonia so bad that her eyelids were clamped closed due to muscle spasms. In addition, she couldn't talk higher than a whisper. Her condition was so severe that she spent $50,000 to have specific muscles in her eyes surgically removed just so she could open her eyelids to see. The next step was to operate and install a deep brain stimulation unit. In desperation, she found an acupuncturist who also was a specialist in neurofeedback.

He first tried acupuncture on her, and when that did not help, he then tried neurofeedback. Within three weeks she noticed improvement, and after a year she is 99% symptom free. Her doctor now wants to incorporate Neurofeedback training for his medical students. She is willing to talk to anyone who wants information—please email me and I will give you her email address.

To read her account of the ordeal, you can look up Carol L. Hogue on Google.

So far, there is not a great deal of formal research on the efficacy of Neurofeedback on CRPS, but there has been one study that was published in 2007:

Jensen, M. P., Grierson, C., Tracy-Smith, V., Bacigalupi, S. C., Othmer, S. (2007).* Neurofeedback treatment for pain associated with complex regional pain syndrome.* Journal of Neurotherapy, 11(1), 45-53.

I have a great deal of confidence that Neurofeedback in combination with Biofeedback will help people who suffer with CRPS. That being said, the only technique I would recommend you avoiding is the LENS technique, as that actually provides input into the brain, versus with standard Neurofeedback, your brainwaves are input to the computer, so it is completely non invasive.

Let me try to explain it: Imagine seeing your heart beat on the screen. Now imagine if your heart beat were on the screen represented as a bar graph. Each time your heart pumps, you see the bar go up and down on the screen. Now imagine that bar represents your brain, and that each time the bar goes up, you know that you are producing beneficial brainwave patterns. Imagine if you trained your brain to recognize beneficial patterns every week, and could then learn to produce these patterns without the use of a computer. Hopefully you are starting to get a good idea of what neurofeedback is.

In addition to Neurofeedback, I believe that everyone here should try something called Qi Gong. I know I am beginning to sound new age, but I assure you I am very scientific in my approach. I am very open minded to anything that will help my patients, and this certainly has.

I recently had a patient who was sent from her doctor after a fracture with “median nerve pain,” which I suspected to be CRPS. At the beginning of the session, she reported 8/10 burning pain and after only five minutes doing Qi Gong, she opened her eyes and told me her pain was completely gone. I was completely amazed, as was she.

The next week she returned frantic, saying that her pain had returned. I asked if she had been performing the exercises and she said yes. Despite her insistence, I stood her in a quiet corner and had her perform them again. Within minutes, her pain disappeared. She admitted at that point that she had not been doing the exercises, which completely floored me. After that session, she never missed performing the exercises.

I believe Qi Gong works because it immediately helps to calm the overactive sympathetic nervous system/limbic system, which is what I believe to be responsible for the pathogenesis of CRPS. Once you can learn to quiet your sympathetic nervous system, I believe the pain will quiet as well.

**

I hope that all of you will benefit from what I'm saying here. I wish you the best of luck in your recovery! If you have any questions, please feel free to contact me.

-Jonathan

[hope4thebest]

HI Jonathan,
Thanks for your post and your willingness to inform us about a posible form of treatment that unfortunately is out of the mainstream of available treatment.

I pursued a neurofeedback consult on my own and was given an overview of a treatment plan. (I have RSD primarily in my left limb which has crossed over to my right, and possibly creeping north to my hips and lower back)

I asked my P.M. doc to request it (mine is a worker's compensation case) and of course it was declined. We wrote many letters to the ins. compnay and finally they agreed to ten sessions.

Then I discovered that the neurofeedback treatment required a test ( a mapping of the brain with electrodes) which costs about $1000.
The ins. denied this very important part of the treatment, as with this test, they know exactly which part of the brain to target. Otherwise, they said, it's like groping in the dark without a specific target.

They also said it would take at least a year of weekly sessions for the treatments to present long lasting benefit. The weekly sessions are costly and the WC ins. wouldn't approve the mapping test nor further treatments.

I really wanted to try this as I have read much about the neuroplasticity of the brain and how it can be altered and corrected, and ultimately gets to the real issue of the pathology.

My questions are:
What would be the minimum amount of treatments to provide long term correction?

Is the brain mapping test really necessary? (I think it's called a QEEP)
or can sessions be done without it? How would the technicians know what specific part of the brain to target without it?

I know each individual is different with different needs, but what would be the minimum amount of sessions needed to affect a permanent change in brain pattern?


Gi gong, Tai Chi, yoga and meditation are all ways to quiet the sympathetic nerve..they have been practiced for hundreds of years. It is sad that our culture sometimes looks at these as 'new age' and therefore not taken seriously. Fortunately, our western medicine practices are beginning to recognize and accept the benefit of these practices as they are backed with much scientific evidence.


Thanks so much for bringing up these important topics and sharing the uplifting positive results!!
Hope4thebest

[blueskies]

I think if I were you, I would first invest in some relatively inexpensive biofeedback equipment that you can find online. Biofeedback is for some reason not mainstream, but it is truly amazing how one is able to control the nervous system through conscious thoughts.

Did you know you can change the temperature of the skin of your finger through biofeedback? I now train my finger temperature every night before I go to sleep. It's like taking a xanax for me... once my finger gets up to about 97.5 degrees, I can hardly keep my eyes open. Biofeedback is pretty amazing, but don't just take my word for it... go to the RSDS org's website and search for the 2005 article on biofeedback.

Now that I am thinking about it, if you can't afford neurofeedback (and even if you can) I would first start off investing in straight biofeedback gear and train to balance your sympathetic nervous system. I would first invest in a $20 temperature trainer that you can find on Amazon. Then I would invest in heart-rate variability hardware, such as Resperate or Heartmath. Ask your doctor what he thinks of training heart rate variability and he will probably look at you with a crooked head. Then do a pubmed search on Heart Rate Variability (HRV) and you will find over 12,000 articles to support its importance.

HRV measures the variation of the timing between each beat of the heart. When it is not functioning correctly, stress, anxiety, and autonomic dysfunction ensue. Note the following 2010 article that shows Heart Rate Variability is not functioning normally in individuals with CRPS:

Increased sympathetic activity assessed by spectral analysis of heart rate variability in patients with CRPS
(You will have to look up the article in Pubmed because I can't post links yet)

In order to correct HRV irregularities, you need to focus on proper diaphragmatic breathing to balance the oxygen/CO2 ratios. The Resperate device helps with this, but Google diaphragmatic breathing for more information, as it will take me too long. But one tip I have is to lay down and place a book on your stomach and try to raise and lower the book slowly and evenly. That is the proper way to breathe, otherwise we starve ourselves of oxygen and increase sympathetic tone. Put tiny colored dots all throughout your house and on your car rear-view mirror to remind you to breathe correctly, otherwise you will not remember to do so.

I would recommend a great book for you called Biofeedback and Somatics by Eleanor Criswell. Don't be turned off by the new agey book cover (I was at first), because it's a wonderful, compact book on Biofeedback. Either that, or find yourself a Biofeedback practitioner in your area who can help you with all of this!

So now onto neurofeedback... this is not a cheap field. I am very new to the world of neurofeedback, and right now am in the process of being mentored for the BCIA neurofeedback certification. As you might imagine, it's a very complex process and there is a lot of information to take in.

The reason I got involved in neurofeedback was actually personal, not professional. I have anxiety issues, so I happened to learn about neurofeedback and found a psychologist in the area who specialized in it. The person wanted to charge me $2000 for 20 sessions, and I thought that for $2 or $3,000 I could learn it myself and incorporate it into practice. After all, I'm a licensed therapist, so practicing neurofeedback is in the scope of my practice. In addition, I wasn't sure if my problem would be solved in 20 sessions. Besides that, my brother has stage fright issues, so I wanted to help him too. $10,000 dollars later... and here I am

The test you were ordered to take was called a QEEG. It is an assessment that provides about an hour-long snapshot of how your brain operates on a global level based on measuring 19 EEG points on the scalp.

There are several schools of thought on how to go about determining a treatment plan, and one of them is to use a QEEG. Another that is becoming very popular with clinicians is called Z-Score training. In Z-Score training (Offered by Brainmaster, Nexus, Thought Technology, and various others), your brain is compared to a database of 650 "normal" high functioning brains as you train. Another way to take an assessment is using a mini-Q (Brainmaster's system) or TLC Assessment (Brain-Trainer system), which is basically like a mini-QEEG, and in fact I already have a $6,000 Nexus 10 and am thinking of purchasing an inexpensive (but very good) Pendant so that I can have the ability to do a TLC assessment. If you're interested in training yourself in Neurofeedback, I would look into either a Brainmaster (about $1,500) or a Pendant (about $1,000). You could buy the equipment and then find someone local to do your TLC assessment and set you up with a protocol. Or maybe you can find someone who will rent one to you?

As far as how many sessions you would need, I don't know. I am just starting in this and have only treated two friends I will tell you that one of my friends only slept four hours his entire life before he started working with me, but after just one session using neurofeedback, he now sleeps 7-8 hours a night. The protocol you use has a lot to do with how profound the effects are--sometimes there are no noticeable effects until 20 sessions are done. I will say that everyone I have worked with has been so relaxed that they nod off constantly, even if they had been wide awake 10 minutes prior.

This post is going to get ridiculously long if I keep writing, but I hope I helped answer your questions. If this post helps any of you, pay it forward and post on another board devoted to CRPS to spread the word.

If I can be of assistance, please let me know!

-Jonathan

**

[blueswann]

Originally Posted by blueskies

Dear listmates,

The reason why I am posting is because I want to help everyone here. I am an occupational therapist and have been a hand therapist for the past three years. I have worked with two cases of CRPS that were triggered by wrist fractures. Since I was able to identify the symptoms early on in therapy and alert their doctors, the outcomes were positive. It saddens me to think that all of you suffer with this problem over the long term.

I came across this board quite by accident through a Google search and saw SandyS's posting to pray for her daughter's recovery from CRPS. At that point, I realized that I should share the information that I have been gathering for the past three months in the hopes that it will help all of you in managing your pain.

I have recently become interested in a field called neurofeedback. In essence, neurofeedback holds up a mirror up to an individual's brainwaves and, through the use of various feedback such as audio or video controls, it allows them to control and actually change the way various parts of their brains operate. After several sessions, it can lead to actual structural changes in the brain, a concept called neuroplasticity. I point you to the latest evidence on Sciencedaily** I can't post links because I'm new here, but if you search Sciencedaily for the term neurofeedback you can read the following two articles:

1) First Direct Evidence of Neuroplastic Changes Following Brainwave Training
2) Mind Control Can Make You A Better Surgeon

With no exaggeration, neurofeedback is changing the lives of many people.

To give you an example, I recently called a woman who lives in California who had dystonia so bad that her eyelids were clamped closed due to muscle spasms. In addition, she couldn't talk higher than a whisper. Her condition was so severe that she spent $50,000 to have specific muscles in her eyes surgically removed just so she could open her eyelids to see. The next step was to operate and install a deep brain stimulation unit. In desperation, she found an acupuncturist who also was a specialist in neurofeedback.

He first tried acupuncture on her, and when that did not help, he then tried neurofeedback. Within three weeks she noticed improvement, and after a year she is 99% symptom free. Her doctor now wants to incorporate Neurofeedback training for his medical students. She is willing to talk to anyone who wants information—please email me and I will give you her email address.

To read her account of the ordeal, you can look up Carol L. Hogue on Google.

So far, there is not a great deal of formal research on the efficacy of Neurofeedback on CRPS, but there has been one study that was published in 2007:

Jensen, M. P., Grierson, C., Tracy-Smith, V., Bacigalupi, S. C., Othmer, S. (2007).* Neurofeedback treatment for pain associated with complex regional pain syndrome.* Journal of Neurotherapy, 11(1), 45-53.

I have a great deal of confidence that Neurofeedback in combination with Biofeedback will help people who suffer with CRPS. That being said, the only technique I would recommend you avoiding is the LENS technique, as that actually provides input into the brain, versus with standard Neurofeedback, your brainwaves are input to the computer, so it is completely non invasive.

Let me try to explain it: Imagine seeing your heart beat on the screen. Now imagine if your heart beat were on the screen represented as a bar graph. Each time your heart pumps, you see the bar go up and down on the screen. Now imagine that bar represents your brain, and that each time the bar goes up, you know that you are producing beneficial brainwave patterns. Imagine if you trained your brain to recognize beneficial patterns every week, and could then learn to produce these patterns without the use of a computer. Hopefully you are starting to get a good idea of what neurofeedback is.

In addition to Neurofeedback, I believe that everyone here should try something called Qi Gong. I know I am beginning to sound new age, but I assure you I am very scientific in my approach. I am very open minded to anything that will help my patients, and this certainly has.

I recently had a patient who was sent from her doctor after a fracture with “median nerve pain,” which I suspected to be CRPS. At the beginning of the session, she reported 8/10 burning pain and after only five minutes doing Qi Gong, she opened her eyes and told me her pain was completely gone. I was completely amazed, as was she.

The next week she returned frantic, saying that her pain had returned. I asked if she had been performing the exercises and she said yes. Despite her insistence, I stood her in a quiet corner and had her perform them again. Within minutes, her pain disappeared. She admitted at that point that she had not been doing the exercises, which completely floored me. After that session, she never missed performing the exercises.

I believe Qi Gong works because it immediately helps to calm the overactive sympathetic nervous system/limbic system, which is what I believe to be responsible for the pathogenesis of CRPS. Once you can learn to quiet your sympathetic nervous system, I believe the pain will quiet as well.

**

I hope that all of you will benefit from what I'm saying here. I wish you the best of luck in your recovery! If you have any questions, please feel free to contact me.

-Jonathan

hi jonathan, i would like to know your opinion of someone (me) who has rsd 12yrs now. i'm on pretty much the same meds i've been on since 05 i think it was then. anyway i got rsd from knee surgery. at one point i was down to 2 or 3 neurontin a day i still took the same amount of other meds. u see i also have porphyria u can go to the porphyria foundation dot com n read about it. a blood disease. i have the one called variegate. i have trigger thumb. going to neurologist today for nerve induction test. don't know what will be said about the trigger thumb. being a christian i've been taught not to claim an illness as mine. because it's not mine. anyway whenever a person that has rsd n has surgery it can spread to area of surgery already having it i'm really nervous about maybe having to go that route. i cause a deep wound on same leg i had surgery n there was no change in my leg. so maybe i'll be ok. but anyway i was just wondering if u would be willing to give me some hints ideas or whatever as to what to do about this trigger thumb. i would be grateful. i've done some research myself n have come up with the same answers. i also need to know who in my area is the best hand surgeon i can find n knows what they're doing. well thanx in advance for any ideas or help u can provide God speed. be richly blessed. blueswann

[BjoernBlomqvist]

Jonathan – where is your practice located? Would love to become a patient.

Just talked with a doctor in Germany who is researching on relapse prevention after Ketamine therapy. He said one should do neurofeedback and focus on Alpha 10 hertz. Ketamine calms down NMDA but neurofeedback can help calm other parts of the CNS.

Does that make sense?

Would love to hear from you!

Cheers, Bjoern

[gabbycakes]

Originally Posted by blueskies

Dear listmates,

The reason why I am posting is because I want to help everyone here. I am an occupational therapist and have been a hand therapist for the past three years. I have worked with two cases of CRPS that were triggered by wrist fractures. Since I was able to identify the symptoms early on in therapy and alert their doctors, the outcomes were positive. It saddens me to think that all of you suffer with this problem over the long term.

I came across this board quite by accident through a Google search and saw SandyS's posting to pray for her daughter's recovery from CRPS. At that point, I realized that I should share the information that I have been gathering for the past three months in the hopes that it will help all of you in managing your pain.

I have recently become interested in a field called neurofeedback. In essence, neurofeedback holds up a mirror up to an individual's brainwaves and, through the use of various feedback such as audio or video controls, it allows them to control and actually change the way various parts of their brains operate. After several sessions, it can lead to actual structural changes in the brain, a concept called neuroplasticity. I point you to the latest evidence on Sciencedaily** I can't post links because I'm new here, but if you search Sciencedaily for the term neurofeedback you can read the following two articles:

1) First Direct Evidence of Neuroplastic Changes Following Brainwave Training
2) Mind Control Can Make You A Better Surgeon

With no exaggeration, neurofeedback is changing the lives of many people.

To give you an example, I recently called a woman who lives in California who had dystonia so bad that her eyelids were clamped closed due to muscle spasms. In addition, she couldn't talk higher than a whisper. Her condition was so severe that she spent $50,000 to have specific muscles in her eyes surgically removed just so she could open her eyelids to see. The next step was to operate and install a deep brain stimulation unit. In desperation, she found an acupuncturist who also was a specialist in neurofeedback.

He first tried acupuncture on her, and when that did not help, he then tried neurofeedback. Within three weeks she noticed improvement, and after a year she is 99% symptom free. Her doctor now wants to incorporate Neurofeedback training for his medical students. She is willing to talk to anyone who wants information—please email me and I will give you her email address.

To read her account of the ordeal, you can look up Carol L. Hogue on Google.

So far, there is not a great deal of formal research on the efficacy of Neurofeedback on CRPS, but there has been one study that was published in 2007:

Jensen, M. P., Grierson, C., Tracy-Smith, V., Bacigalupi, S. C., Othmer, S. (2007).* Neurofeedback treatment for pain associated with complex regional pain syndrome.* Journal of Neurotherapy, 11(1), 45-53.

I have a great deal of confidence that Neurofeedback in combination with Biofeedback will help people who suffer with CRPS. That being said, the only technique I would recommend you avoiding is the LENS technique, as that actually provides input into the brain, versus with standard Neurofeedback, your brainwaves are input to the computer, so it is completely non invasive.

Let me try to explain it: Imagine seeing your heart beat on the screen. Now imagine if your heart beat were on the screen represented as a bar graph. Each time your heart pumps, you see the bar go up and down on the screen. Now imagine that bar represents your brain, and that each time the bar goes up, you know that you are producing beneficial brainwave patterns. Imagine if you trained your brain to recognize beneficial patterns every week, and could then learn to produce these patterns without the use of a computer. Hopefully you are starting to get a good idea of what neurofeedback is.

In addition to Neurofeedback, I believe that everyone here should try something called Qi Gong. I know I am beginning to sound new age, but I assure you I am very scientific in my approach. I am very open minded to anything that will help my patients, and this certainly has.

I recently had a patient who was sent from her doctor after a fracture with “median nerve pain,” which I suspected to be CRPS. At the beginning of the session, she reported 8/10 burning pain and after only five minutes doing Qi Gong, she opened her eyes and told me her pain was completely gone. I was completely amazed, as was she.

The next week she returned frantic, saying that her pain had returned. I asked if she had been performing the exercises and she said yes. Despite her insistence, I stood her in a quiet corner and had her perform them again. Within minutes, her pain disappeared. She admitted at that point that she had not been doing the exercises, which completely floored me. After that session, she never missed performing the exercises.

I believe Qi Gong works because it immediately helps to calm the overactive sympathetic nervous system/limbic system, which is what I believe to be responsible for the pathogenesis of CRPS. Once you can learn to quiet your sympathetic nervous system, I believe the pain will quiet as well.

**

I hope that all of you will benefit from what I'm saying here. I wish you the best of luck in your recovery! If you have any questions, please feel free to contact me.

-Jonathan

Jonathan,

Great information. Thank you for all the time to post. Just quickly I had a radial head fracture of my right elbow with a collateral ligament tear. 1st surgery radial implant, second manipulation under anthesthia, third contracture release. Then I meet the wonderful doctors as the Hospital For Special Surgery. First met Dr. Daniel Richman who Dx. my RSD and then met and if your in the OT business I know this name will be farmiliar Dr. Robert Hotchkiss. Between the 2 doctors and there unbelievable experience went through another contracture release, an ulnar nerve transpostion another manipulation under anthesthia, and an neuroma surgery. Then to get the RSD under control during all this had 14 SGB, 3 - 5 day inpatient ketamine procedures with Dr. Richman and the follow-up boosters with Dr. Schwartzman in PA.

I have done some reading on neurofeedback and acupuncture and would love to try it. At this point I have come a long, long way with my injury. Work PT go to the gym and take very little medication if any at all. My right arm will never be the same but before I met the doctors at HSS I was told I would only get 40% or less back and currently I would say I have 85% back. I think the future of Pain Managment is going to lye in treatments such as neurofeedback, acupuncture, PT and the likes. The ketamine is a great tool and yes it did get my RSD under control and I believe avoided spread but it's not a complete solution to the problem and again just my opinion it's only a bandaid and a expensive one at that. I would be interested in any info. you have to share.

thank you again,

gabbycakes

[kathy d]

Thanks Jonathan for sharing your knowledge and professional opinions with us. It is nice to know that professionals like you do exist since we have all seen so many people that just don't care about us and want to give us meds and send us home to suffer alone.

I've had full-body rsd and some other neuro diseases for over 6 plus years now and like said above I will not own them. I firmly believe I will be completely cured of rsd. I think a positive mindset is a huge tool in getting rid of it. I have used and done every kind of pain med, med, PT, lidocaine, ketamine, etc...the list goes on and on. What I have found that worked for me was gentle chiropractics, Reiki (with some Qi Gong), Accupuncture, meditation, and the last year natural vitamins and minerals in an iv that started out every two weeks and now is once a month. I do pray alot and try to laugh once each day no matter what. I think of rsd not as my disease but as my journey. Also, before rsd I had taken about two years of yoga which has helped me immensely esp the breathing and meditation parts of the program. I have put myself on my own PT program and I am doing better now that last year after I suffered a fall in ICU during ketamine treatment...I thought I was going to die for months the pain was incredible. And I was withdrawn on fentanyl cold turkey which was not a pleasant experience for sure. This is not a fast journey but it is a journey that must be taken both mentally and physically as well. Boy, now I sound so new age huh? lol. I have always believed in a more natural approach to any illness and prior to rsd never even took tylenol.

I am very happy to hear any other ideas you may have that would help us. You should be so proud of yourself for helping us...like I said not many professionals really understand or take the time to understand rsd and what we go through each day. It is a pleasure to know you.
Thanks,
kathy d

[blueskies]

Hello all,

I haven't been back here in a long time, so sorry for my delayed response. Trigger thumb is inflammation of the synovial lining of the tendon (tenosynovitis). Often times, "idiopathic" (of unknown cause) inflammatory conditions are multifactorial. The question is: Why is this happening? Most doctors give a textbook answer, but the truth is most don't truly understand it and will attack it with surgery, as a hammer unfortunately only sees nails. Often times surgery works, but is it addressing the root cause?

Stress can trigger an inflammatory response, as can diet, posture, repetitive activities, and allergies. Trigger points often are a good way of attacking the problem starting near the cervical spine and working your way down. Trigger points near the neck and shoulders often cause impingement on nerves and circulation, which can surface much farther away in the body (such as in the fingers, wrists and elbows). With my clients, I had much success using ETPS and massage, and infact I helped a client avoid surgery on bilateral carpal tunnel syndrome and bilateral dequervain's. But it is my belief that trigger points are caused by the above factors, such as posture, diet, stress, etc., and without addressing these issues, you are putting out the smoke and not the flame. Ever hear someone talk about how many "knots" they have because they had a rough week?

I would recommend you try to isolate as many variables as you can to see what might affect the problem. You can also search amazon for books on anti-inflammatory diets so that you can avoid certain foods that may or may not trigger your inflammation. What I find interesting is that for many individuals with Rheumatoid Arthritis, they seem to be tremendously helped by dietary changes. Just search on amazon for books on rheumatoid arthritis cure, and then read the reviews.

If your stress levels are high, and even if they aren't, try meditating once per day for fifteen minutes either before you go to bed if you have sleep issues, or when you wake up. Search on Youtube for Vispassana (Mindfulness) Meditation. One of the videos has an outline of an individual sitting in lotus position that I use with all of my clients, as her voice is very calm and serene.

Mindfulness meditation has been studied as being extremely beneficial, and can lead to structural changes in the brain after daily practice for just eight weeks. Qi Gong, as I mentioned before, has helped MANY of my clients with their pain and I would recommend it wholeheartedly. Look for Lee Holden's beginner's guide to Qi Gong DVD, as that is what I recommended to all of my clients.

If none of that helps, then you can try neurofeedback and biofeedback to help with systemic regulation. After having more experience with neurofeedback, I see it as a type of mindfulness meditation that allows a client to hone in on one particular type of brain activity.

The other issue that can be a cause is genetic, which might be the case with you, since you have been diagnosed with poryphia. I don't know anything about porphyria or how it affects the physiology, so unfortunately I can't help you there.

The internet is a great resource for information, but unfortunately there is so much of it that it is hard to sort out the good from the bad. My suggestion for you would be to start by searching on PubMed for peer-reviewed evidence. You can also try to find a forum that specializes in porphyria, as many of the users share what does and what does not work for them. I wish you the best of luck with your condition and will try to check back here more often.

-Jonathan

Originally Posted by blueswann

hi jonathan, i would like to know your opinion of someone (me) who has rsd 12yrs now. i'm on pretty much the same meds i've been on since 05 i think it was then. anyway i got rsd from knee surgery. at one point i was down to 2 or 3 neurontin a day i still took the same amount of other meds. u see i also have porphyria u can go to the porphyria foundation dot com n read about it. a blood disease. i have the one called variegate. i have trigger thumb. going to neurologist today for nerve induction test. don't know what will be said about the trigger thumb. being a christian i've been taught not to claim an illness as mine. because it's not mine. anyway whenever a person that has rsd n has surgery it can spread to area of surgery already having it i'm really nervous about maybe having to go that route. i cause a deep wound on same leg i had surgery n there was no change in my leg. so maybe i'll be ok. but anyway i was just wondering if u would be willing to give me some hints ideas or whatever as to what to do about this trigger thumb. i would be grateful. i've done some research myself n have come up with the same answers. i also need to know who in my area is the best hand surgeon i can find n knows what they're doing. well thanx in advance for any ideas or help u can provide God speed. be richly blessed. blueswann

[blueskies]

Hi Bjoern,

I'm in South Florida, but I don't do anything that you can't find near where you live. In fact, you could learn to do it at home with relatively inexpensive equipment. While it is a bit of a time investment, I think mindfulness meditation, Qi Gong, and neurofeedback are all therapies that should be considered by everyone suffering from anxiety, as anxiety simply is a disregulation in way the brain perceives stressful stimuli.

It is my hypothesis that most, if not all, of the individuals with RSD/CRPS suffer from chronic anxiety and perseverative thoughts that cause the sympathetic nervous system to always be on high alert. Any area that is damaged, whether it be from a spider bite, or a fracture, has to be repaired and remapped in the brain. As the body sends out osteoclasts and osteoblasts to remodel bone in a fracture, the sensory pathways going to and from the area to the brain must also be remapped.

If someone has an inappropriately elevated level of sympathetic tone, their perception of pain will be different than someone who does not. Sympathetic tone modulates the limbic (emotional) structures in the brain, and the limbic structures in the brain serve as amplifiers for pain processes that are triggered by nociceptive stimuli. Nociceptors (pain receptors) simply send a signal to the brain telling the individual that a painful stimulus has been elicited. This is why meditation and Qi Gong can be so helpful with this type of condition, as they allow the brain to shut down extraneous chatter, and to simply focus on the moment.

Alpha training has been used on many individuals and has quite an impressive track record. Look up Eugene Peniston's studies on alpha training and alcoholics from 1989. There are many types of training protocols that exist, however, and alpha may or may not be the best approach for you. If you want to know more information, you can send me a private message through here and I will be more than willing to help you find someone near you.

Neurofeedback can calm down parts of the CNS, it is true, but so can mindfulness meditation and Qi Gong. I would explore that avenue first, since they are inexpensive, and if you do not find relief there, then explore neurofeedback.

-Jonathan

Originally Posted by BjoernBlomqvist

Jonathan – where is your practice located? Would love to become a patient.

Just talked with a doctor in Germany who is researching on relapse prevention after Ketamine therapy. He said one should do neurofeedback and focus on Alpha 10 hertz. Ketamine calms down NMDA but neurofeedback can help calm other parts of the CNS.

Does that make sense?

Would love to hear from you!

Cheers, Bjoern

[blueskies]

Hi Gabby,

It sounds like you've been through quite the experience. I'm sorry to hear about all of your procedures, but I hope that you are starting to feel better and regain some of your function. I am not an expert in ketamine, as I am an occupational therapist, and not an MD, so this is not a treatment option for me and therefore I must explore alternatives that are within my scope of practice. Luckily, much of the alternatives I find seem to be more holistic in the sense that they balance the entire mind and body's state of arousal, and therefore affect all of the physiological systems at once.

For contracture, I have had very good success using ETPS with deep dissure massage and perhaps static-progressive or dynamic splinting over a long period of time. Splinting in this fashion helps to elongate, and sometimes release the tissues, whereas ETPS seems to somehow (and I have no idea how) release some of the scar tissue. I have used it with some very significant scars and saw some amazing results. Most OTs/PTs don't use this technique, so find someone in your area who has been trained in ETPS. ETPS also apparently helps with CRPS, but I have yet to use it with this condition, so I would reserve judgment until I do so.

I would recommend for everyone here that they explore Qi Gong and mindfulness meditation first, and neurofeedback second. I am a very scientifically oriented person, and I recommend meditation and Qi Gong based on observation and also research. I personally would combine mindfulness and Qi Gong with neurofeedback.

Perhaps you might also look into the literature on transcranial DC electrical stimulation (tDCS), as well. I haven't investigated whether this has been used in CRPS, but I imagine it has. tDCS is a very safe procedure whereby a small DC current is sent through various parts of the brain. Go to pubmed and search for it--you will be impressed at the research. It is similar in efficacy to transcranial magnetic stimulation.

Since tDCS is more invasive than neurofeedback, it is not something I incorporate into my practice, but I present it to you for informational purposes only. I don't recommend you pursue DC stimulation by yourself without first consulting an MD/psychiatrist who specializes and has experience in the area. (There aren't many.) If you find someone who specializes in it, you should be able to buy a unit for around $4-500 dollars and do it at home with instructions from an MD.

Hope you are feeling better... and I hope this information helped!

-Jonathan

Originally Posted by gabbycakes

Jonathan,

Great information. Thank you for all the time to post. Just quickly I had a radial head fracture of my right elbow with a collateral ligament tear. 1st surgery radial implant, second manipulation under anthesthia, third contracture release. Then I meet the wonderful doctors as the Hospital For Special Surgery. First met Dr. Daniel Richman who Dx. my RSD and then met and if your in the OT business I know this name will be farmiliar Dr. Robert Hotchkiss. Between the 2 doctors and there unbelievable experience went through another contracture release, an ulnar nerve transpostion another manipulation under anthesthia, and an neuroma surgery. Then to get the RSD under control during all this had 14 SGB, 3 - 5 day inpatient ketamine procedures with Dr. Richman and the follow-up boosters with Dr. Schwartzman in PA.

I have done some reading on neurofeedback and acupuncture and would love to try it. At this point I have come a long, long way with my injury. Work PT go to the gym and take very little medication if any at all. My right arm will never be the same but before I met the doctors at HSS I was told I would only get 40% or less back and currently I would say I have 85% back. I think the future of Pain Managment is going to lye in treatments such as neurofeedback, acupuncture, PT and the likes. The ketamine is a great tool and yes it did get my RSD under control and I believe avoided spread but it's not a complete solution to the problem and again just my opinion it's only a bandaid and a expensive one at that. I would be interested in any info. you have to share.

thank you again,

gabbycakes