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/