CRPS – You Don’t Have To Give In To Your Pain…

I attended the RSDSA conference in LaJolla yesterday.  The theme of the conference was, “Treating the Whole Person: Optimizing Wellness.”  I love the philosophy behind treating the whole person and optimizing wellness, because that is how each person will regain their life.  That’s how I did it!  

 

It was a great experience to meet other people that had been diagnosed with CRPS/RSD and their caretakers.  I’ll be honest this was the first RSDSA conference that I had been to.  I look forward to going to more in the future and hopefully being a speaker too.

 

One common thread that I heard throughout the day was different ways for CRPS patients to cope with their pain, to put small goals in place that they can achieve, to stay grounded, to look to the positive, etc.  I love all of these suggestions.  I know they help and are key in helping to get through those tough days when pain levels are high.

 

Yet from a couple of the doctors that spoke I heard comments that I didn’t agree with:  “Providing mere relief…”, “Results are good…” and “Healthier with their CRPS”.  As someone that was diagnosed with CRPS (type 2), lived with it for 6+ years, tried all Traditional treatment options, was treated globally, and finally gained remission in 2013 – I think I can say that from a patient prospective the above comments were not music to my ears.  Yes, it is important to be as healthy as possible but it is just as important to have some type of tangible results for the patient in regards to dramatically decreasing pain levels on a long-term basis.

 

I heard heartwarming stories about young ladies that pushed through their pain to regain some normalcy in their life, but they are still dealing with the CRPS demons.  Whether it was a new injury that caused the CRPS to return or perhaps it people have learned to push through their pain; either way there has to be a better way.

 

There is a huge push for Ketamine Infusion therapy right now for CRPS and other conditions.  I know it can bring short-term relief to CRPS patients and then follow-up Ketamine boosts are needed to stay pain free.  Is this the right treatment option for you?

 

I listened to a Naturopathic Doctor talk about the need to change the paradigm and balance the body.  I completely agree with these statements.  What I didn’t agree with was being “healthier with CRPS”.  I don’t know about you but I can be the healthiest person on this planet but if I am still in pain then I am not too happy.   I’ve actually treated athletes that were diagnosed with CRPS.  Their concern was centered around their pain.

 

What we have to look at is CRPS and most chronic pain conditions including chronic migraines are also tied into the Limbic System in the brain.  Dr. Sajben talked about the glia and how important they are in the pain process.  We have to take into consideration the ‘mind-body’ connection if we want to break the pain loop, help CRPS and chronic pain patients to get out of fight/flight, to balance the ANS, and address many other issues associated with chronic pain.  These connections have to be made.  Then we have to treat the whole person.  This is not just the chronic pain.  It is everything tied in with it:  stress, anxiety, insomnia, depression, and/or PTSD.  Once an individual is able to regain normalcy in these areas then they will regain their life.  Yes, it is possible.

 

I personally don’t believe that any person diagnosed with chronic pain has to give in to their pain or live with extremely high pain levels.  With HCT (Hypnosis Combined Therapy) we have found that chronic pain patients, CRPS, and other diagnosis have been able to dramatically decrease pain levels and many gain remission.  This is an evidence based, non-invasive, drug-free protocol that is providing long-term relief.  HCT: clinical hypnosis, biofeedback, light/sound therapy, neuroplasticity training, working with the Limbic System, cell memory and more… is allowing people to regain their lives when they thought they had exhausted all their options. 

 

It is important for every pain patient on a global basis to find the treatment protocol that is right for them.  We are all individuals and as such what works for one may not work for all.  Please do your research, ask questions and be your own advocate. 

 

Traci’s Story

My name is Traci Patterson.  I’m the Founder and Director of Advanced Pathways Hypnosis, a Keynote and motivational speaker, writer, Delegate with the International Pain Foundation, an Ambassador with the U.S. Pain Foundation, patient advocate, and CRPS survivor.

Who was I prior to my diagnosis with Complex Regional Pain Syndrome (CRPS)?

Prior to my diagnosis with CRPS, I was a healthy, active, mother, wife, healthcare executive (at the top of my professional career), volunteer (with Young Life, Rising Tide and Orangewood Children’s Foundation), mentor, had been on the board for Tustin Eastern Little League, enjoyed softball, kayaking, outdoor activities, baseball, gardening, landscaping, and staying very busy.  I was one of those individuals that was always busy either with our family, volunteering or just helping friends or family.  I just loved to be active and busy.  That all changed after December, 2006 when I stepped over a box in our garage and turned my ankle.  What started out as a simple sprained ankle, triggered dominoes to something that what we could have never imagined. 

How would you define Complex Regional Pain Syndrome?

Complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), is a long term condition that often worsens with time. It is characterized by severe pain and sensitivity, swelling, and changes in the skin. It may initially affect one limb and then spread throughout the body; 35% of people report symptoms throughout their whole body.

The cause of CRPS is unknown though CRPS is associated with dysregulation of the central nervous system and autonomic nervous system resulting in multiple functional loss, impairment and disability. Precipitating factors include injury and surgery, although there are cases where no injury had occurred at the original site. CRPS is not caused by psychological factors, yet the constant pain and reduced quality of life has been known to cause psychological problems (such as increased depression and anxiety). Although “research does not reveal support for specific personality or psychopathology predictors of the condition,” CRPS is associated with psychosocial effects, including impaired social and occupational function.  It is classified as an amplified musculoskeletal pain syndrome.

Somebody who has chronic pain is living with a daily challenge to cope with pain that does not have a quick fix, sometimes it does not have a cure and the best you can hope for is to get into remission. As a patient you feel like you have to learn how to alter your dreams and bring focus and meaning back to your life.  Patients living in chronic pain also have to cope with others looking at them, not understanding what they are trying to deal with day in and day out, because most people only see a glimpse of what you are going through and to them you look normal.  You are not in a cast, you are not necessarily in the hospital, and you are home on medication dealing with a horrible pain condition that is wreaking havoc on your body.  This is why Chronic Pain, CRPS/RSD and many neurological pain syndromes are also known as ‘Invisible’ pain conditions.   

 How are people’s lives affected by this illness? What changes when they start dealing with this illness?

Your life is altered, your dreams for the future are never going to be exactly as you planned them to be, you have to change your expectations in life because now you are dealing with a condition with chronic pain, and now that you have pain you are not physically able to do things the way you used to.  So it alters your life.  Many will say it’s a matter of learning to live with it, around it and accept the changes that have come to your life.  The career that you had may now be gone.  The many activities that you were involved with, you now cannot continue due to high pain levels and it is very hard for others to understand this.  People that once stood by your side start to disappear as they just don’t understand why you are unable to do what you used to.  Your life as you once knew it changes, and this isn’t even talking about the impact it has on your family.

Why is this illness different from others illnesses?

You have to face this for the rest of your life, unless you are one of the individuals that can get into remission. Some people go to physical therapy for 6 to 8 weeks and then they get better. There is no cure for Complex Regional Pain Syndrome (CRPS). Some people have an injury and they go through their process and the pain; medication, PT, injections, blocks and all of a sudden they graduate and then they’re able to get into remission and get back to their lives (this is not the norm). People like me that don’t respond to normal treatments go through aggressive treatment protocols that can include: heavy medications, injections, PT, regional blocks, lumbar sympathetic blocks, and maybe even Spinal Cord Stimulators.  Yes, I did all of that and had no improvement.  As a matter of fact everything they did to treat me made me worse!  I was told my case was one of the worse my Pain Management doctor had ever seen.  It was very aggressive and extremely volatile.  It started out in my left foot and ankle, moved into my back when they put in a Spinal Cord Stimulator (they stated this had never happened before to previous patients), then I had a build-up of scar tissue on my Dura of the spine that would have paralyzed me, so the final Spinal Cord Stimulator had to be removed.  At this point my Pain Management doctor was giving up!  My CRPS kept trying to ‘mirror’ to my right leg, but we were able to stop it each time.  How was I ever going to get better?  I refused to give up, my life had already been drastically altered, and I had been living life as a Chronic Pain patient on a cocktail of pain meds to just live…  I just knew in my heart that there had to be some answer out there, some hope, some way of getting my CRPS into remission and I refused to give up! 

At this point in my life I knew I had already been to hell and back, my CRPS was moving – getting worse (it was in my left foot/ankle, my entire back and had recently moved into my pelvic region), I knew God had other plans for me and I just had to figure out where that path was going to lead me.

Complex Regional Pain Syndrome Traci’s Case Report

My Name is Traci.  I was 36 years old when I originally sprained my ankle stepping over a box in December, 2006.  That started my journey.  Then a little over a year later I was formally diagnosed with Complex Regional Pain Syndrome (CRPS) in January, 2008. 

I was then referred to a DPM (Doctor of Podiatric Medicine) for assessment. After conservative treatment that included a CAM Boot, Physical Therapy and cortisone shots, the pain continued.

The DPM followed with three (3) surgeries of which several errors were made, including cutting the Tibial Nerves, Lateral Plantar Nerve, Rupturing the Posterior Tibial Tendon, and making the incision in the wrong place. 

I had two (2) surgeries by a top Orthopedic Foot and Ankle Surgeon to reconstruct my Posterior Tibial Tendon, and later he completed a Tarsal Tunnel Release hoping to help with the nerve pain.

During these surgeries, my pain continued to increase disproportionate to what should have been occurring.

In 2008, I was officially diagnosed with CRPS by my Pain Management doctor, and he put together an aggressive treatment plan to try to treat my condition.  Initially, he thought he could get my condition under control within 6 months to a year, and told me this could be one of the most devastating diagnoses of my life.

He started with putting me on a lengthy list of opioid pain medications that included: Methadone, Dilaudid, Ketamine (oral and topical), and more…

In addition to these medications he tried regional blocks with no results, and then we did 13 Lumbar Sympathetic Blocks (the last one shut down my adrenal glands, landing me in the hospital for several days).  Thus, my PM Doc stopped any further blocks and I was then told I had to get a Spinal Cord Stimulator (SCS).  In addition to the Sympathetic Blocks I also received a prescription from my pain management doctor to undergo HBOT.  I did 25-30 sessions of HBOT, which I had heard could help to relieve pain, but did not get relief.  The next step was a SCS trial which was a success. Yet once the real spinal cord stimulator (SCS) was implanted it functioned in-properly and caused swelling every time the battery was charged.  Thus, I had to have a 2nd surgery to change out the SCS Battery. It was at this time that I started to notice some CRPS Pain in my back.  I had continued trouble with the SCS, so the system was removed and replaced (Medtronic to Boston Scientific) – no precautions were taken to make sure the CRPS didn’t move into the back.

Following this surgery, I had full CRPS in my back (my waist to my shoulders).  I was told by the Neurosurgeon this was the first time he had this happen.  I had further issues with the Boston Scientific SCS, which included a build-up of scar tissue on the Dura of my Spine.  Upon further review, it was found in several articles that SCS in rare cases could cause scar tissue on the Dura that would lead to paralysis.  Therefore, my SCS was removed/explanted (2011).

It was at this time that my Pain Management doctor told me, “…after all of this I’m afraid to touch you. There is nothing else I can do at this time.  Therefore, you may have to do your best with pain meds.”

Three weeks following my post-op of the SCS removal, I flew to Frankfurt, Germany, for further treatment.  This was the first of my four trips over to Frankfurt, Germany, for treatment of my CRPS.

The first trip, we started with building up my immune system, Stem Cells (utilizing my own blood), Thymus Cell Extract, Blood Ozone Therapy, Neural Therapy with Ozone, Myers Cocktail IV’s, Lymphatic Massages, Physical Therapy and Detoxing.

On my second trip to Frankfurt, we noticed there was one area where they removed the SCS that was problematic.  Following an ultrasound, they discovered there was something foreign in the incision.  The Medical Director in Germany re-opened this area and found there was some gauze left in my incision from when the SCS was removed.  This was cleaned up, left open to heal, debrided on a daily basis until it closed on its own.

During this trip and my subsequent trips to Germany, I completed the following types of treatments (this is inclusive of the last three trips):

Neural Therapy with Ozone

Ionization

Ozone Therapy

Blood Ozone Therapy

Thymus Cell Therapy

Regional Hyperthermia (3x/day – 5days/week: first CRPS patient in world to be treated with Regional Hyperthermia)

Alpha Lipoic IV’s

Myers Cocktail IV’s

Homeopathic Injections

Regeneris Therapy (RNA Cell Therapy – 4 weeks treatment protocol)

PK Protocol

Physical Therapy and Massage

Bodywork

(Last trip to Germany was August-September, 2013).

 

I still feel that my trips to Germany were important in my over-all treatment process as they were able to shrink the area(s) of my CRPS and decrease my pain levels overall.  Following my last trip, my pain levels remained at a 5 for approximately six weeks and then started to increase again.

I contacted the Medical Director in Germany and it was suggested to do two more rounds of Regeneris or return to Frankfurt for continued treatment.

Between my trips to Germany, I was also treated in Mexico in tandem with the Medical Director from Frankfurt.

In Mexico, he treated me with the following over 3 different stays:

Insulin Potentiated Therapy (IPT – utilizing pain meds)

PK Protocol

Physical Therapy

Chiro

Alpha Lipoic IV’s

Myers Cocktail IV’s

Rife

Acuscope

Neural Therapy with Ozone

Ondamed Biofeedback

HBOT and detox

Regional Hyperthermia

 

These treatments only decreased my pain levels to a 6-7.  My last trip to Mexico was July, 2013.

Following my last trip from Germany I contacted highly regard clinic known for hypnosis for possible treatment.  I had previously done some hypnosis sessions, but was referred there due to their background and being known for Pain Management.  After speaking we set up a time to be seen mid-November, 2013.

I was told that it would be a week long intensive session that would include our time together and homework each evening (i.e. reading, listening to CD’s, etc…).  To me, this was an exciting avenue to go down and I was 100% dedicated to get the most out of everything that was set before.

Day one, I walked in with what I formerly called “Pain Levels”, and now have changed, calling them “Comfort Levels” up in the 8-9 range.  The evening prior they were at a 10+ due to the full day of travel to get from CA to my destination.  Little did I know, although I had hoped and prayed it would be, that my ‘Comfort Levels’ would drop to a ZERO by the end of the week! 

Over the week we used a combination of:

Hypnosis

Imagery / Meditation

Biofeedback

Light/Sound Therapy

“Issue Solution Training”

and learning Self-Hypnosis

 

While working together the first day, it was discovered that I was also dealing with a case of PTSD due to everything that I had dealt with over the years; the treatments; being given medications for anesthesia and not having them work – then listening to the physicians; having my Pain Management doctor tell me that there was nothing more he could do and I would just have to live with the pain;  going through some treatments that were extremely uncomfortable; and negative comments from physicians about the possible outcome of my situation.  This did not surprise me to say the least.

From the first day to the last day I saw progress.

Thursday of our week together, I was scheduled for a massage.  To be honest, I was a bit reluctant and worried walking to that appointment due to the fact that I had not been able to tolerate a massage on my back since 2011 when CRPS had moved into my back.  I knew that my ‘Comfort Level’ had already dropped to a ZERO in my back, but I wasn’t sure if I trusted it enough to do the massage.  I was pleasantly surprised to see how relaxed and comfortable I was during the massage.  I had no pain in my back and I was able to keep my ‘Comfort Level’ at a Zero.  To me this was a test, and it showed me what I had accomplished to that point was holding and would continue to get better.

The other huge thing that they were able to assist me with was a continual spasm or uncontrollable motor deficiency in the little toe on my left foot.  This was in addition to my CRPS, and it was due to a nicked Lateral Plantar Nerve.  I had had many doctors consult with me regarding this, and I was always told that they had never seen anything like it.  They had no idea what to do, etc.  Thus, I had been dealing/living with my little toe being in continual spams since 2007, and in 3 days, we were able to get my little to stop moving!  Wow, this was a mechanical problem and it had stopped.  This was huge!  Talk about bringing a smile to my face. It was intriguing to see how the process of hypnosis could access areas of the brain to stop the continuous signals being sent out.

Yes, it was an intense week of learning, working, and following all of the instructions given me, but to have my ‘Comfort Levels’ drop to ZERO for the first time since 2006 when I sprained my ankle, then was diagnosed with Complex Regional Pain Syndrome (CRPS), it was well worth it.

One of the things that I learned was that every cell has a memory.  It is essential to provide the cells with a new memory other than pain, and when you do this, new memories will take hold as the cells regenerate every 90 days.  Thus, in approximately 90 days after arriving home, new memories should be strong.

When I arrived home I was barraged with questions, because friends and family members immediately noticed a marked difference in my demeanor, a bigger smile on my face, my ability to put weight on my left foot for the first time since 2006, and an overall sense of well-being.  This was after 5 days with of treatment with hypnosis in a multi-therapeutic approach.

Once home and settled, I put myself into a routine that included listening to the CDs of the sessions that I had completed, doing self-hypnosis, and utilizing the tools given to me.  After the first week home, I was no longer utilizing my cane to walk.  I still needed to work on my gait, but this was a big milestone.  During this time, I also met with my Pain Management doctor.  He was used to me going to Germany for treatment and coming back with their protocols, but this time, he had no idea what to expect.  When he entered the exam room, I was sitting there with socks and running shoes on, no cane and long pants that could touch my ankle and medial side of my foot. 

My Pain Management doctor looked at me, pushed back on his stool, and started looking around the room. He was in disbelief at what he was seeing.  He then asked me to take off my left shoe and sock, because he wanted to see if my left little toe was still spasming or doing the rhythmical movement.  When he saw that it was not moving, I had shoes on, my coloration was not off in my foot, and I was feeling great, he was dumbfounded.  He next words were, “I’m being punked. Where are the cameras and how are you doing this?”  I had to laugh.  He wanted to know what I did in my treatments, but since he doesn’t understand what I did, he was skeptical.  Then when I asked him to take me off of my pain medications, he was awestruck.  He hesitated, to say the least, because he wasn’t sure this was going to hold.  As I told him, I am confident in where I am and what I have accomplished.  I have no pain at this time, so I don’t feel that I should continue on pain medications, and I asked again to be titrated off of them.

Week by week, I continued to see progress.  Having the ability to walk my dog at the park with no pain, completely comfortable, completing household chores with no discomfort, babysitting my nephew who was 6 months old with complete confidence, and spending time with my family in activities that I would not have been able to have done previously, these are all the rewards of learning self-hypnosis and following through with what I was taught during my treatment.

Now over 3 years later I continue to be completely pain free and have had the ability to regain my life.  It is important for people living with CRPS and other chronic pain conditions to hear about positive outcomes such as mine.  This is not a one off or something that cannot happen to others.  As a matter of fact I am honored to be able to treat chronic pain patients now with HCT (Hypnosis Combined Therapy).  This protocol is very similar to what helped me get into remission with some exciting changes based upon medical advanced.

I’m now seeing clients on an international basis with outstanding outcomes.

I know for some it is hard to believe, but trust me with everything that I went through with treatments in the United States (Traditional Western Medicine), in Frankfurt, German (Integrative Medicine), Mexico (Integrative Medicine), and then back to the US to be treated by a highly recommended clinic… I think I can say I looked at everything, tried just about everything and found what worked for me.  I have heard from others with CRPS that they have tried hypnosis and it just doesn’t work.  I too tried hypnosis prior to going back to be treated in 2013, my previous treatments with hypnosis didn’t help me – then again they were not well versed in chronic pain and not certified in ‘Pain Management’ either.  When I was referred to the last clinic I was told by everyone that it was the best, that they did things differently, and they do – they work with the biology and physiology of the brain and how it causes Chronic Pain.  It is a completely different way of looking at things, working with Chronic Pain and finding a solution for the pain.  What works for one will not necessarily work for all, but if it is successful for one it is likely going to be successful for many!

Now you have a better understanding of what Complex Regional Pain Syndrome is, how it affects a patient, just a little bit about what we go through and some of the treatments we endure.  I was a fortunate patient in that I was able to get into remission in 2013. 

I was determined to find a treatment somewhere, some way to help me regain my life, and I did it!  I went from not being able to have anything touch the areas where I had CRPS to being able to put a sock on my foot, to wearing a shoe and not being in pain.  I got my life back.

This is why I am so passionate about sharing my story, getting information out about chronic pain, trying to educate as many people as possible on the effects of CRPS/RSD and chronic pain syndromes, and viable treatment options.

Let me ask this question before you read on… if you or a loved one are willing to look at opioid therapy, spinal cord stimulators, pain pumps and other invasive treatments that are only bandaides… why are you not willing to seriously look at other treatments that have worked on other CRPS/RSD and chronic pain patients?  Is it because your doctor(s) are not talking to you about these types of treatments?  Possibly because the pharmaceutical companies are not advertising it or the insurance companies are not pushing it? Yes, I know that many patients, like me, find out about these treatment options after going through the ringer.  But, if this is a way to get your life back, to regain what you lost, and to start fresh… is it not worth taking a serious look at your options?   Please take a serious look at what will really work to help you or your loved one in the long run.   No, not every treatment is right for every patient, but if it is evidence based and non-invasive is it not worth looking into? 

HCT by Traci Patterson is helping chronic patients that have been diagnosed with CRPS/RSD, neuropathic pain, Fibromyalgia, cancer pain, phantom limb pain, PTSD, migraines, etc… to regain their lives on a global basis.  

I have a dynamic background from a perspective that few if any one other Certified Instructor and  Clinical Hypnotist can offer.  My background as a chronic pain patient diagnosed with Complex Regional Pain Syndrome (CRPS), someone that was treated with/utilized hypnosis to get into remission, and is now a practicing hypnotist is rare.  I have patients that contact me on a global basis searching for viable treatment options.   

If you have questions regarding CRPS, my story or would like information on how you or a loved one can find relief from chronic pain please contact me.

 Info@Advancedpathways.com  | http://www.AdvancedPathways.com | 714-717-6633

It All Starts in the Waiting Room, and It’s a Wrap with Your Doctor

By: Traci Patterson, CH, CI – Owner and Founder, Advanced Pathways Hypnosis

 

If you or a loved one has ever been diagnosed with a chronic pain condition, CRPS, cancer, PTSD or any other debilitating condition, this will hit home as you’ve been there. Where is ‘there’, you ask? The doctor’s office to obtain verification of a diagnosis, to gather information, and hopefully gain the answers you are seeking. What most people don’t realize is that initial time in the waiting room is starting to set the stage for what is to come. The thoughts that are whirling and twirling through your head all while sitting there in those uncomfortable chairs. The body language of those sitting around you is dreary, gloomy, and everything but uplifting. Starting to sound familiar? And these are just the uncomfortable feelings even before you get to see the doctor. What most people don’t realize is all of these uncomfortable feelings and emotions are setting the stage and putting us in a place where we are more vulnerable. We are in a place physically and mentally where anything that is said to us is taken very literally, and can either help us or hinder us.

You’re finally called back to ‘the room’, or the examination room. It is cold, sterile and very unwelcoming. After a few questions and the typical vital signs, the wait continues. Stress levels are increasing, anxiety is starting to settle in, and you are on the edge of your seat not knowing what to expect.

The doctor finally arrives. You get a quick handshake, if you’re lucky, and then it is down to business. During this time, what the doctor says, how they treat you, their mannerisms, whether they actually examine you or dismiss you, and their words, set the stage for how well you will fare. Patients that are dismissed, not examined, and/or are talked down to, tend to walk away feeling degraded and hopeless. The words that are spoken to a patient at a vulnerable time are key to their success or failure in their future.

Many patients with chronic pain, CRPS, cancer, PTSD, and other debilitating illnesses end up hearing negative statistics during their doctor’s visits. They are told things like, “This is probably the worst case I have seen,” or “You are one of my most complicated patients,” or “I’m sorry, but I don’t think we have anything else to offer you.” All of these negative comments set the stage and start the patient(s) down the path to future failures.

I am not here to bash physicians or Traditional Medicine. What I am here to state is how the information, the way it is presented to a patient, and the tone in how it is said, affects their outcome. As a whole, the healthcare industry needs to do a better job teaching practitioners to communicate effectively with their patients, to make sure that all of their options are on the table, and to keep an open mind about alternative solutions.

Patients and their loved ones are searching for answers. They are holding onto hope that they will find a way to get better. They are trying to find a doctor or practitioner that will provide solid answers and solutions to help them get better. I understand there are times that traditional therapies and treatments may not be enough to help heal someone or get them into remission, but that is the time for the treating physician to be open to looking outside of the box in order to help find a solution, or perhaps encourage the patient to do so. No one treatment will work for everyone. Thus, it is very important that patients have access to information on all treatment options available.

I think I can talk about this as I have been there as a patient diagnosed with CRPS and now as a loved one of someone diagnosed with cancer. I have learned through all of these experiences that the power of suggestion at the times when we are most vulnerable can determine our outcome if we allow it. Just know there are always options out there.

Never give up hope!

 

CRPS: Diagnosis and Prognosis

By: Traci Patterson, CH, CI and Owner, Advanced Pathways Hypnosis

As an individual that was diagnosed with CRPS (Complex Regional Pain Syndrome) I know there are a lot of questions about how patients are diagnosed and from there what is the prognosis for those patients.  I’ve put together some information to try to answer some questions that I’m asked quite often.

DIAGNOSIS

Currently there is no actual ‘one test’ that will give a definite positive diagnosis of Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD).

Instead to receive a positive clinical diagnosis of CRPS/RSD, pain specialists and doctors use the current BUDAPEST CRITERIA 2004, which was brought out during the International Consensus Conference in 2004. This new diagnostic criteria takes over from the one from the International Association for the Study of Pain in 1994 (IASP 1994). The pain specialist or doctor will discuss with you your medical history, symptoms you may be having and any signs or changes. They also may do nerve conduction studies, EMG, MRI scan, x-rays, bones scans, and/or a thermal study.

If there is no known injury or illness that contributed to the problems then the doctors and specialists would carefully check to see if there is no other treatable condition that has been missed.

The BUDAPEST CRITERIA 2004 states that for there to be a clinical diagnosis of CRPS/ RSD certain criteria need to be reached.

These are:

  •  There needs to be lasting pain which is disproportionate to the initial injury or illness.
  • The patient also needs to be experiencing at least 3 out of 4 of certain categories listed below. If you are positive in any of these categories you need to tell the doctor / specialist that is treating you.

Specific Categories:

  1. SENSORY – This means that you describe symptoms of increased sensitivity or hypersensitivity on your limb
  1. VASOMOTOR– This is when you describe temperature differences in your limb and / or skin color changes and / or difference in your skin color between the limbs
  1. SUDOMOTOR / EDEMA – You describe edema and / or sweating changes and / or sweating asymmetry
  1. MOTOR / TROPHIC – Reports of decreased range of limb motion and / or abnormality of a muscle or nerve that effects or produces motion (including tremor, weakness, dystonia…) and / or trophic changes (includes changes in nails, hair, skin…)
  • You must ALSO show at least 1 sign observed by the doctor or specialist at your appointment, in 2 or more of the categories below:
  1. SENSORY– Evidence of hyperalgesia usually following a pinprick and / or allodynia (proof of pain to a light touch and / or deep somatic pressure and / or joint movement)
  1. VASOMOTOR – Proof of temperature change in 2 limbs or more and / or skin color changes
  1. SUDOMOTOR / EDEMA – Proof of swelling or edema and / or sweating changes and / or sweating asymmetry
  1. MOTOR / TROPHIC – Evidence of decreased range of motion and / or motor dysfunction (such as tremor, weakness, dystonia) and / or trophic changes (skin, hair, nails…)
  • If there is NO other diagnosis that could better explain the symptoms and signs observed during a physical examination, and you meet the above criteria then you will most likely be diagnosed with CRPS/RSD.

PROGNOSIS

If you receive early treatment following the injury or illness there is a little evidence or research to say that there is a fair chance of recovery or ‘remission’ as CRPS patients know it. It has not yet however been proven during clinical trials and studies concerning early treatment. However, the prognosis will be different for each sufferer as everyone is considered unique and their symptoms although they will have a common trait, will also vary.

Occasionally people are left with unrelenting, agonizing pain and irreparable changes regardless of what standard/traditional treatment is given to them.  I can’t stress enough, that more alternative and complementary treatment options need to be given to CRPS/RSD and chronic pain patients.  This is a starting point.  There are non-invasive treatment options currently available for CRPS patients at this time, but the hospitals and physicians are not utilizing them nor speaking to their patients about them.  Clinical/medical hypnosis/hypnotherapy has been shown to be effective in significantly reducing pain [I utilized clinical/medical hypnosis to get into remission, and I currently treat CRPS patients with clinical hypnosis and a multi-therapeutic approach to assist them in significantly reducing their pain and/or getting into remission.] and let’s not forget about Calmare Therapy.

More research is definitely require to help understand the actual causes of CRPS, how early treatment affects it, why it progresses in some people and not in others… The list is endless as to questions about CRPS – this needs to change.

In a recent study from 2014, Van Velzen, G.A.J. et al. (See below) concerning the quality of life, they concluded:

“We conclude that loss of QoL in CRPS patients is due mainly to reduced physical health. A comparison with data available from the literature shows that CRPS patients generally report poorer QoL than patients with other chronic pain conditions, particularly in the physical domains.”

(* QoL = Quality of Life)

Many children and teenagers who have been diagnosed tend to have a good recovery. According to Edward C.T.H. et al (See below for study details)

“The prognosis of childhood-onset CRPS I seems less favorable than usually reported, and is comparable to the prognosis of the adult-onset CRPS I in view of a decreased quality of life and a large relapse percentage (33%) at long-term follow-up.”

In another study by Finniss, D.G., et al. entitled ‘Complex Regional Pain Syndrome in children and adolescents’, (See below) it was said that:

“Early diagnosis, referral and appropriate intervention are essential in decreasing pain, suffering and resorting function for children and adolescents with CRPS.”

There is still more research to do to learn as much as we can about Complex Regional Pain Syndrome (CRPS) aka Reflex Sympathetic Dystrophy (RSD).  At this time there is no one specific test that can be done to diagnosis this condition.  The doctors and specialists are doing the best they can to confirm Complex Regional Pain Syndrome (CRPS) based upon the BUDAPEST CRITERIA 2004.  No, this is not perfect but it is aiding is the diagnosis and treatment of patients.

Research is slow when it comes to CRPS both in the US and in other countries.  There is some research that has shown that early diagnosis and early treatment will aid in the recovery and subsequent remission, but no clinical trials / studies have been completed to prove this.

I have personally experienced, treated and seen patients that have had CRPS from 1 years to 10+ years get into remission utilizing different non-invasive treatment options including clinical hypnosis.  We have to have studies done on all types of treatments, all stages of CRPS patients undergoing treatment and the efficacy of the treatments.  I think that the outcomes would be eye opening when it came to the money spent on Spinal Cord Stimulators and some of the other traditional treatments vs integrative and complementary treatments.

It seems that there is insufficient evidence in many areas of the condition that are unknown or understood by the health profession on a worldwide basis. This is something that has to change in order to increase the outcomes for CRPS patients.  That is the exact reason why Advanced Pathways Hypnosis is taking the steps to initiate data collection and a clinical study on the outcome of, “Clinical Hypnosis Utilizing a Multi-Therapeutic Approach with CRPS Patients”.  Please keep your eyes open in the near future for further information.

REFERRED TO RESEARCH / STUDIES / TRIALS