15 Tips for Treating CRPS/RSD – For Healthcare Providers

15 Tips for Treating CRPS/RSD – For Healthcare Providers

By Melissa Wardlaw.

As a patient with CRPS/RSD, I am lucky to have a pain-management physician I have been partnered with since 2004 whom I trust, who trusts me and who understands my complex medical issues. As I have visited many physicians and other specialists on my medical journey before and after partnering with him, clearly this hasn’t always been the case! Recently I spoke to an audience of healthcare professionals at a healthcare conference, and left them with this takeaway of some helpful treatment tips I have comprised in all my years as a CRPS/RSD, chronic illness & pain patient.

  1. Patients with CRPS/RSD are on individual journeys and every patient is different! Even though most patients have similar symptoms and the common theme is very severe pain that is greater and lasts longer than the scope of the inciting event/injury, these symptoms can vary in duration, intensity and overall disability. Also, many CRPS patients have co-morbid (simultaneous) medical conditions which may bring additional challenges unique to treating each patient.
  2. Melissa Wardl

    Be a Healthcare Partner! Because CRPS/RSD is so poorly understood with so many differences in opinions amongst practitioners, often times patients know more about CRPS/RSD than their practitioners; but they especially know more about THEIR individual conditions and how CRPS affects them. Listen closely. Educate. Find out patients’ goals. Help come up with strategies together that work specifically for each patient, thus being a partner in solution-oriented healthcare.

  3. Treat the whole person instead of the disease! This means gaining insight into hormonal, endocrine, psychosocial, and biochemical processes to ensure the patients’ systems are in balance – this will allow the greatest opportunity for treating CRPS/RSD. If patients are generally healthy in the body and mind, they will be more apt to accept chronic healing.
  4. Watch for supplemental symptoms and medical issues CRPS/RSD can cause! With the punishing, continuous and extreme physical stress and severity of pain/symptoms resulting from CRPS/RSD, patients may develop cardiac conditions, situational anxiety/depression, insomnia, PTSD, high blood pressure, diabetes, internal organ issues, IBS and the like. It is important not to ignore these additional symptoms and medical conditions that may arise.
  5. The Goal of treating CRPS/RSD is to calm down the patient’s nervous systems, and not bring more stimulation to an already misfiring nervous system in overdrive! CRPS is similar to a PC motherboard being dropped in water and malfunctioning. Calming down the fight or flight response occurring in the patient’s body is necessary. This is accomplished through various methods, treatments, medications and coping strategies. However, beware of overstimulating the body further and treating patients as guinea pigs. Also, as every patient is different, what might work for one patient might not work for another. There is a reason CRPS stands for COMPLEX regional pain syndrome!
  6. Primary goals of treatment are really three-fold:
    1. To increase function/normalcy (this might be different for each patient)
    2. To reduce pain/symptoms and gain better control over them (better management, not necessarily abatement)
    3. To improve overall quality of life (not necessarily back to one’s “old life”)
  7. CRPS/RSD is an INVISIBLE chronic illness (for the most part)! Most CRPS patients look/sound “normal” depending on other co-morbid medical issues. There can be some visible signs of illness; however symptoms may wax and wane. In the goal of fitting in with society, many patients have learned ways of hiding or masking their visible signs of illness & disability. It is important to ask patients to describe symptoms disabling to them (and why), and have them document and take pictures of visible and invisible symptoms, and bring this information to their appointments in an effort to maximize time.
  8. Help patients find additional specialists and resources to aid in their overall chronic (and general) health.

These may include:

  • Chronic Illness & Pain (and Grief/Loss) Counselors, Hypnotherapists, Psychiatrists, etc.
  • Physical (Water) & Occupational Therapists, Pilates/Yoga, Tai Chi Instructors, etc.
  • Naturopathic Practitioners (i.e., Acupuncturists, Nutritionists, Massage Therapists, Chiropractors, etc.)
  • Interventional Pain Management Physicians, Neurologists, Endocrinologists, Rheumatologists, Hormone Specialists
  • Support Groups (both in-person and online), Churches, Friends/Family, Service Animals, etc.
  • Online Resources & Patient Advocacy Groups (i.e., www.rsds.org, www.rsdhope.org, www.uspainfoundation.org)
  1. Be Kind, Empathetic & Compassionate! You may not have all the answers, however what may help patients the most is a healthcare professional who treats them with respect and takes the time to listen, understand, not judge or make them feel their illness/pain is “all in their heads,” because it is not! You would be surprised just how much a little compassion and kindness can help a patient (of any kind), especially one who is having a bad day.
  2. Be Honest! If you don’t know what to do to help the patient, tell them this, but be prepared to refer them to someone who can. A patient will respect you much more if you are honest and sincere, but in a respectful manner.
  3. Help set realistic goals! Many times patients have the goal of “fixing” or curing CRPS/RSD (which is an incurable illness) and getting back to their old lives. Sometimes they may see this as the only option with treatment. Helping to reset their expectations and mindset goes a long way to the overall management of the disease. While remission is possible, it is rare and flares are common. Working WITH the disease as opposed to AGAINST it will go much further than trying to completely eradicate it. That way if remission does occur, it is a huge bonus!
  4. The best options for treatment are multi-faceted! Educate the patient on the many options they have, from the non-invasive to invasive and everything in between. There may be some residual (justified) fear about procedures and the like, so take cues and respect patients’ comfort levels, while encouraging them to work through them at the same time.
  5. Opiates are ok! While opiate medications should not be the first choice for CRPS/RSD (or any illness), many CRPS patients are successfully treated long-term with opiates, especially if co-morbid chronic illness & pain conditions exist. Most CRPS patients present with very severe, continuous and disabling pain; and while CRPS has no specific medications of its own on the market, opiates are made specifically to treat pain. The key is to educate the patient/caregiver(s) on the pros/cons of opiate therapy, and screen/monitor for risk factors. Most statistics put legitimate patients becoming “addicted” to opiates around 1-3%; this is extremely low, so don’t be intimidated or scared to use them as part of an overall multi-modal pain management strategy. First and foremost, your duty as a healthcare professional is to help the patient and “do no harm.”
  6. Most CRPS/RSD patients are educated, professional members of society! We are mothers, fathers, sisters, brothers, sons and daughters. CRPS/RSD is a devastating chronic illness, often changing patients’ lives in a split second and robbing us of our careers, activities, family lives, educational pursuits, relationships and life purposes up to that point. It isn’t called the “suicide disease” for no reason. The pain does get that bad. It is important to understand that many patients are going through the most difficult time of their lives, as are their families and loved ones. The loss and grief is palpable. Helping them to focus on the good they do still have in their lives is critical to survival. Professional assistance is very helpful, not only for patients, but also for spouses/caregivers and loved ones because their lives have changed dramatically also.
  7. Encourage patients to continue on with normal activities as much as possible! With the all-consuming nature of CRPS/RSD, it has a tendency to take away patients’ abilities to do things they used to do. However, the more they can participate in tasks they enjoy and love, the more it will help with overall healing and finding a purpose again. Finding activities that distract the pain and allow for natural endorphins to kick in, the better patients will feel, at least temporarily, and thus will slowly gain strength and control over the long term effects of CRPS/RSD. It will be a multiplier of confidence and positivity that will show patients they are not defined by their disease(s) and are still valued members of society!

NOTE: Opinions expressed are solely my own and do not represent the views or opinions of other CRPS/RSD patients or practitioners.

Melissa Wardlaw was diagnosed with CRPS/RSD (now full-body involvement) as a result of a spinal cord injury suffered in 2002 during routine epidural steroid injections. She also has fibromyalgia, lumbar/cervical degenerative disk disease, migraines and additional chronic medical issues. Formerly a high-powered Business Executive & Consultant in start-up operations and HR, Melissa has an MBA in entrepreneurship, is a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer support/counseling & advocacy (pro bono) as her health will allow. She also runs both in-person and online support/empowerment groups for CRPS/RSD, chronic illnesses & pain in Metro Atlanta. Melissa is also an avid volunteer and supports multiple organizations committed to rescuing animals and helping others with chronic illnesses & pain. She has two Ragdoll cats, who graciously “allow” her to live in their brand new home in Atlanta, GA.

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Authored by: Melissa Wardlaw

There are 8 comments for this article
  1. Michael hause at 10:41 am

    Whos yourr dr and where is he located

  2. Katie Olmstead at 7:14 am

    Drew, that was a horrifying comment you made. I found methadone to be one of the most effective and yet tolerable pain meds I have taken, even at a low dose. I will warn you, though, that when I chose to titrate off of it (my choice), I went into full out withdrawal. Actually called some hotline because I was alone and frightened. Be careful.

  3. Katie Olmstead at 2:46 pm

    #5, 7 and 15 spoke loud and clear to me. No, I am not the physician. I have had CRPS for nearly 20 years. Yes, that is how I describe my nervous system, as being on overdrive. I have been going to acupuncture for years and just started taking Chinese herbs, too. I told my practitioner that I am nearly buzzing with energy all the time but I can’t access it. Fatigue is terrible. He said, in Chinese medicine, it isn’t that I don’t have energy but that it is “disorganized.” I am all for organizing my energy.
    Also struck by how hard and yes, tiring, to hide all the time.
    And lastly, I most certainly try to maintain a joyful life. I go dancing 2 to 3 evenings a week. And then pay for it. But I need, as she said, to be active enough to get the endorphin kick. I also walk an hour most days. That’s the most healthy thing I do. Along with opioids every 3-4 hours.

  4. Deb at 2:12 pm

    What a wonderful well written piece. Everything written also applies to fibromyalgia. It’s really too bad that our doctors have to be told theses things.

  5. Annette Merkley at 12:50 pm

    What a wonderful article! Would that all those suffering with this horrendous disease, especially my lovely daughter, could have health care providers that are knowledgeable of this complicated disease and heed all 15 of the article’s advisements! Thank you Melissa!

  6. Drew Pavilonis at 8:04 am

    You couldnt be more correct. I recently had surgery on my foot by a very gifted surgeon, but i was shocked to hear that he told my family that i needed to “get off” the methadone that I take daily to treat pain from surgery on my Thalamus. The lack of knowledge in the medical field is shocking and disheartening.

  7. Tom Wardlaw at 8:00 am

    As Melissa’s father I have seen what a positive and ‘can do’ attitude can have on an otherwise hopeless case. She could have given up and let the illness get the better of her. Her looks and actions decry her true condition. She also deals with people not understanding this complicated illness. Add to that the insurance companies not willing to pay for the high cost of only a very few meds that are truly effective as the meds are often off label applications.
    I am very proud of her and her achievements. She has found ways of dealing with the off-the-chart pain and living a reasonably normal life. She is to be commended for her willingness to share her story so that others may have hope for “living” with chronic and severe pain.

  8. Rachel Yorke at 3:09 am

    Well done Melissa a fantastic post. So true. Re. point 13 my Pain Consultant informed me the addiction risk for opioids is 1:3000
    when taken for Pain ie. 0.03%! NSAIDS have a 1:1400 risk of death by fatal stomach bleed

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