CRPS Treatment Options: Why aren’t physicians discussing all options with their patients?

ByTraci Patterson, CH, CI – CRPS Survivor and Owner of Advanced Pathways Hypnosis

Treatment for complex regional pain syndrome (CRPS) also known as reflex sympathetic dystrophy (RSD) must be individualized.  No one treatment will work for everyone.  That being said it is very important that patients have access to information on all treatment options available.

Treatment methods are continuously evolving as research and clinical practice provides new evidence and insights, but most physicians are not staying up to date on the latest treatment options. For example it was once thought that sympathetic nerve blocks were a diagnostic tool and a curative procedure. This has been disproven over time yet most Pain Management doctors are still performing them regularly on CRPS/RSD patients.

The majority of the physicians out there will want to start with anti-inflammatory medications (NSAIDS), pain medications, Physical Therapy/Occupational Therapy, local/regional blocks and then move on to sympathetic nerve blocks.   If there is no improvement with these modalities the next conversation will most likely be about having a Spinal Cord Stimulator implanted, or a pain pump that delivers morphine directly to the nerves affected in the spine.

What happens to the patient when they are told by their physician there is nothing more they can do?  Do you just continue on large quantities of pain medications and continue down the slippery slope?  Or do you fight to find something that will help, a treatment that can possibly put this awful condition into remission?

I have been on both sides of this.  I personally was diagnosed with a very aggressive, volatile case of CRPS.  Local and regional blocks did not work on me.  My Pain Management doctor was dumbfounded when this occurred.  Thus we moved onto lumbar sympathetic nerve blocks (LSB).  I had 13 LSB, until the last one caused my adrenal glands to completely shut down.  This landed me in the hospital for a week.  Following this my Pain Management doctor stated we could no longer do any LSB.  His next step was talking to me about having a Spinal Cord Stimulator (SCS) implanted.  I was against the idea and had a really bad gut feeling about it, but I was told this was the last option I had to reduce my pain.  I went through with the trial and it went well.  Approximately 6 months later I had a Medtronic SCS implanted.  I had nothing but issues with it.  Every time I charged the battery it caused my affected foot to swell.  They could not figure out why this was happening.  The next step was to have the battery replaced with a non-rechargeable battery.  I underwent the surgery to change out the batteries in hopes this would correct any issues.  Keep in mind that with each of these surgeries I had to be admitted to the hospital to control my pain, even though they were supposed to be an outpatient procedure.  Unfortunately, the second surgery to change the battery did not help.  I then started to have issues with the paddle that was implanted.  Long story short, they had to explant the Medtronic SCS and implanted a Boston Scientific SCS. It was during this time that my CRPS moved into my back!  I had asked my Neurosurgeon if this could happen and was assured it wouldn’t – it did happen after all…  I had this one for less than 6 months when I lost the ability to control the stimulation.  Upon further review of the situation and my symptoms it was determined that I had a buildup of scar tissue on my Dura which could cause paralysis if the SCS was not removed.  In Feb., 2011 the last SCS was ex planted from my spine.  At that point I was told by my Pain Management doctor, who is highly regarded, that there was nothing else he could do except to keep me on pain medication.  He was ultimately throwing his hands up in the air!  This did not set well with me.  I was dumbfounded that none of my doctors (Pain Management, Neuro Surgeon, Neurologist or GP) had anything more to offer me.  I had to research viable alternative treatment options on my own.

This is what the typical CRPS/RSD patient goes through once they receive their diagnosis.  Yet, the reality is there are other treatment options out there as I found out.  Treatment options that allowed me to get pain free and in remission.

The big question should be why physicians, hospitals and universities are not better informed about viable treatment options for CRPS/RSD, neuropathic pain and other chronic pain conditions, and what can be done to get the information out to the doctors that are treating us?

Some current treatment methods:

  • Antidepressants and anticonvulsants. Sometimes antidepressants, such as amitriptyline, and anticonvulsants, such as gabapentin (Gralise, Neurontin), are used to treat pain that originates from a damaged nerve (neuropathic pain).
  • Corticosteroids. Steroid medications, such as prednisone, may reduce inflammation and improve mobility in the affected limb.
  • Bone-loss medications. Your doctor may suggest medications to prevent or stall bone loss, such as alendronate (Fosamax) and calcitonin (Miacalcin).
  • Sympathetic nerve-blocking medication. Injection of an anesthetic to block pain fibers in your affected nerves may relieve pain in some people.
  • Intravenous ketamine. Studies show that low doses of intravenous ketamine, a strong anesthetic, may substantially alleviate pain. However, despite pain relief, there was no improvement in function.

Therapies

  • Applying heat and cold. Applying cold may relieve swelling and sweating. If the affected area is cool, applying heat may offer relief.
  • Topical analgesics. Various topical treatments are available that may reduce hypersensitivity, such as capsaicin cream (Capsin, Capsagel, Zostrix) or lidocaine patches (Lidoderm, others).
  • Physical therapy. Gentle, guided exercising of the affected limbs may help decrease pain and improve range of motion and strength. The earlier the disease is diagnosed, the more effective exercises may be.
  • Occupational therapy. Mirror box therapy, and desensitization of affected limbs. Assisting with activities of daily living, improving range of motion and strength.  The earlier this is utilized in the diagnosis, the more effective it is.
  • Transcutaneous electrical nerve stimulation (TENS). Chronic pain is sometimes eased by applying electrical impulses to nerve endings.
  • Biofeedback. In some cases, learning biofeedback techniques may help. In biofeedback, you learn to become more aware of your body so that you can relax your body and relieve pain.
  • Spinal cord stimulation. Your doctor inserts tiny electrodes along your spinal cord. A small electrical current delivered to the spinal cord results in pain relief. (Always do your research prior to moving forward with the implantation of a SCS or pain pump.)

Alternative/Complementary Therapies

  • Calmare therapy. Non-invasive, drug-free treatment option. Many time ‘boost treatments’ need to be completed to stay pain free with CRPS/RSD.
  • Clinical Hypnosis. Non-invasive, drug-free treatment option. The utilization of hypnosis and a multi-therapeutic approach is proving to be an effective treatment option for CRPS/RSD.  Those patients going through a ‘One Week Intensive’ have been able to significantly decrease their pain if not completely get into remission.  Working with someone well versed in chronic pain, pain management, biofeedback, neuroplasticity training, etc. will give CRPS or chronic pain patients the best outcomes.

Some Pain Management physicians that I have spoken to have stated that they are treating their patients in the manner that they were taught (i.e while in medical school and residency…).  The outline they verbally gave me pretty much mimicked how I was treated and how thousands of other patients are treated with CRPS/RSD.  The stark reality is that new treatment methods are continuously evolving as research and clinical practice provides new evidence and insights, but most physicians are so inundated with the number of patients that they have to see in a day, charting and regulations that it is extremely difficult to stay up to date on the latest treatment options.  This is not an excuse but reality.

If we stop to think about this it does make sense.  Pharmaceutical companies spend millions of dollars every year in an effort to ensure that their information and medications are in front of or in the hands of doctors.  Durable medical equipment (DME) companies do the same thing.  As a matter of fact they go as far as making sure their products and services are well known at the university levels too.  The bottom line is that updated information on alternative treatment options must be circulated back to those physicians and facilities that are treating patients with CRPS/RSD and any chronic pain condition (fibromyalgia, neuropathic pain, chronic migraines, etc.).

Living with complex regional pain syndrome (CRPS) or any type of chronic pain is challenging, especially if you don’t have a proper treatment plan or access to all your treatment options.  Share information with your treating physician from reliable sources and don’t be afraid to ask about alterative or complementary treatment options that may be available.

If you would like more information on CRPS/RSD, alternative/complementary treatment options, or the author – Traci Patterson please contact us at:

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

References

1.McMahon SB, et al. Wall and Melzack’s Textbook of Pain. 6th ed. Philadelphia, Pa.: Saunders Elsevier. 2013. https://www.clinicalkey.com.

2.Ferri FF. Ferri’s Clinical Advisor 2014: 5 Books in 1. Philadelphia, Pa.: Mosby Elsevier; 2014. https://www.clinicalkey.com.

3.Borchers AT, et al. Complex regional pain syndrome: A comprehensive and critical review. Autoimmunity Reviews. In press. Accessed

4.Abdi S. Etiology, clinical manifestations, and diagnosis of complex regional pain syndrome in adults. http://www.uptodate.com/home.

5.Complex regional pain syndrome fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm.

6.Abdi S. Prevention and management of complex regional pain syndrome in adults. http://www.uptodate.com/home.

7.Complex regional pain syndrome treatment page. RSDSA. http://rsda.org/treatment/

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

A Search For Effective Treatment Options For Chronic Pain Patients

by:  Traci Patterson, Owner, Advanced Pathways Hypnosis

There are over 100 million Americans dealing with chronic pain today. They are searching for answers. They are holding onto hope that they will find a way to get better. They are trying to get to a doctor that will have an answer. Many patients are being misdiagnosed for years prior to getting a correct diagnosis.  Others are put on countless medications that typically are not working, having to endure numerous procedures because doctors don’t know what else to do. And then when all else fails, they are told they need either a Spinal Cord Stimulator or a Pain Pump. Then if those options fail, the doctors want to refer them on to somebody else because they are out of options and the patient(s) feels like they are left, in effect, holding the bag.

What will it take for the patients to get access to effective treatment options without being denied access to what they really need? The unfortunate facts are that the majority of chronic pain patients and cancer patients do not get sufficient relief from their pain medications. Therefore, the doctors continue to prescribe a cocktail of various medications hoping that it will do the trick. The patients then end up paying the ultimate price with side effects caused by the medications. Don’t get me wrong, I am not, in any way, stating that Pain Management doctors should not be prescribing medications. What I am stating is that they do not get to the area in the body that is responsible for sending out the pain signals, and this is why they are not effective. The insurance companies are willing to pay for prescription after prescription, and yet they do not want to reimburse for creams that are more effective or for a treatment that is non-drug related.

I just received an update from a leading pharmaceutical company with a press release about a new drug that they received approval from the US Patent Office. This is for a new proprietary drug for neuropathic pain and fibromyalgia. This means they are able to start double-blind studies and placebo studies on the medication.  The interesting part of the write-up is when they mention, “The market for such a medication worldwide runs into many billions of dollars.” This is prior to their comment about the drug’s ‘lack of serious side effects’, but yet there is no further comment as to any side effects discovered to date.

It’s great that they are looking at putting other options on the market for doctors to prescribe to their patients, but what about making other treatment options that are currently available accessible to patients? When will this happen?

Spinal Cord Stimulators are heavily pushed by pain management doctors and neurologists for chronic pain. I have spoken with several physicians off the record about the implantation and use of the Spinal Cord Stimulators.  During these conversations, I’ve been told that some doctors utilize them more than others because they can make more money, and it is easier than doing multiple blocks and going down the long treatment road with a chronic pain patient. Again, it comes down to reimbursement, unfortunately, and a push by Durable Medical Equipment (DME) companies.  The general cost for a Spinal Cord Stimulator, unit, surgery, etc., can be close to $100,000 (sometimes more) depending on the manufacturer, area, hospital, and other variables.

What about Calmare Therapy? The Calmare device uses a biophysical rather than a biochemical approach. A ‘no-pain’ message is transmitted to the nerves via disposable surface electrodes applied to the skin in the region of the patient’s pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way. Maximum benefit is achieved through follow-up treatments. The patient may be able to go for extended periods of time between subsequent treatments while experiencing significant pain control and relief.

This particular treatment option has been around for several years. Calmare tried for quite some time to get name recognition and focused primarily on social media, word of mouth, etc. Insurance companies have refused to reimburse for their treatments even though they have been found to be effective.  Why?  One reason could be that they are not tied into the large DME companies and conglomerates.  It is an interesting way of looking at it. Calmare did get a helping hand on June 30, 2014 when a Judge in New York ruled in favor of Calmare, instructing Allstate Insurance Company to reimburse for personal injury claims that involved the use of Calmare Therapy. Calmare also got some great publicity from the daytime TV show ‘Doctors’ when they spoke about a ‘brand new treatment option for chronic pain and CRPS’ on an episode in the month of June, 2014.  Then later in 2014 when the Mayo Clinic finally did research on Calmare for Chemotherapy Induced Neuropathic Pain, and found this treatment to be effective.  Keep in mind their therapy has been around for several years, but because a New York University decided to utilize it, it is now considered new.  Generally the cost for this treatment is around $2,500 for 10 treatments.   Patients typically start with 10 treatments and then will have to do follow-up treatments to stay pain free if they have CRPS/RSD.

Ketamine Infusions are talked about widely with CRPS patients.  This is also a medication used for those with severe depression, irretractable pain, and other chronic pain conditions.  There definitely is some baggage that comes along with the treatments, but they are mostly effective. Patients have to undergo a screening process, meet certain guidelines, and then of course there is the financial burden. I believe it is approximately $50,000-$60,000 for the initial set of infusions, hospital stay, and then the first follow-up infusions at six months. Insurance will not reimburse for this. They have gone to court to in some states to try to get reimbursement, but it is very difficult. More and more patients are looking at this avenue because they are unaware of Calmare and the other options available. Ketamine infusions do come with some side effects, and I would urge anyone thinking of this option to please do their research first.

I also urge some research at this juncture because I am hearing more and more about the infusions being done out-patient instead of in-patient and they are not as effective if done this way.  Secondly, I have not seen any studies as of yet on the long-term use of Ketamine when used in high dosages.

Last, but absolutely not least on the list is clinical hypnosis. I know many people are going to start reaching for their mouse to click away, but please keep reading. I am referring very specifically to a specialist in hypnosis that has a strong background with chronic pain patients, CRPS, fibromyalgia, cancer pain, phantom limb pain, PTSD, stress, anxiety, etc. You should first determine whether the hypnotist/hypnotherapist has a certification in ‘Pain Management’, and are they familiar with the condition that you are diagnosed with.  A good program will be ‘multi-therapeutic’; meaning it will include hypnosis/hypnotherapy, biofeedback, light/sound therapy and other modalities.

I personally was diagnosed with Complex Regional Pain Syndrome (CRPS), and the final treatment that got me into remission was working with someone that had a background working with chronic pain patients using a multi-therapeutic approach.  He was credentialed in Pain Management and many other areas as well.  A one week commitment is what it takes.  Hypnosis for a week long intensive can run around $3,000 – $4,000, but can fluctuate depending on the geographic area that you are being treated.

This is a drug-free treatment option that can dramatically decrease your pain and in some patients they can even get into full remission.  At this time, it is not well-publicized as it is not backed by pharmaceutical companies or DME companies.  Yet there are many studies on the efficacy of this treatment by Stanford, Harvard, Yale, Mayo Clinic, NIH, etc.  Patients are given the tools be self-sufficient.  No side effects as it is drug-free, and no long-term follow-up needed.

If you are searching for answers for chronic pain, CRPS/RSD, fibromyalgia, chronic migraines or other health/wellness issues;  please take the time to consider some of the non-invasive treatment options in this article. Never give up on regaining you health, life and success!  Yes, it is possible… if I can do it, so can you!!!

For more information on CRPS, chronic pain or Traci’s journey, please feel free to contact the author, Traci Patterson.

Traci has a dynamic background from a perspective that few if any one other Hypnotist can offer. Her background as a chronic pain patient diagnosed with Complex Regional Pain Syndrome (CRPS), someone that utilized hypnosis to get into remission, trained under Mr. Ron Eslinger, and is now herself a practicing hypnotist is rare. She has patients that contact her from all over the United States and Internationally.  Traci is considered, ‘The CRPS Hypnotist’.

Traci@AdvancedPathways.com, or visit my website at www.AdvancedPathways.com.