The Myth of a Cure for CRPS
WHAT DOES REMISSION LOOK LIKE?
By Dr. Katinka van der Merwe
Dr. Katinka van der Merwe is a chiropractor who practices in Fayetteville, Arkansas. She treats the Central Nervous System, (specifically the Autonomic Nervous System) with the “Three Punch System”, recently revised to the “Four Punch System.” Her work is detailed on this site in an earlier blog. She has treated CRPS patients from all over the world in her clinic, and is the author of “Putting Out the Fire: New Hope for RSD/CRPS Patients,” expected to be released on Amazon in November. Her clinic number is 479-966-9766.
Through the years of working with CRPS patients, I have often encountered what I refer to as “the myth of remission.” What does this mean, and why do I refer to it as a “myth?”
When patients who suffer from CRPS dream of remission, they picture themselves back in the life that they used to have before CRPS. They picture themselves “cured,” and as having no pain ever. The truth is more complicated. You have to remember that CRPS is not like lightning that strikes unlucky, healthy people. CRPS affects those who, for whatever reason, have unhealthy nervous systems, and/or unlucky genetics. I call this “The perfect storm.” While it is possible to compensate for your genetics, this does mean that you will have to live more carefully than most. However, it does not mean that you have to wrap yourself in figurative bubble wrap, living in fear of every bump and fall. I have had many patients, after completing their treatment, suffer injuries or undergo surgeries, with no ill effects.
CRPS attacks weak spots in the nervous system if it is unable to self-limit the inflammatory cycle. A body that is functioning correctly can switch off inflammation when it is no longer needed. A healthy body can move out of a “fight or flight” response when it is no longer appropriate. During the “fight or flight” response, a chemical released by the adrenal glands called norepinephrine causes the body to temporarily “borrow” blood supply from, among other, the skin, the GI tract, and small nerves. When the perceived threat or stress has passed, healthy bodies can reverse this. However, the bodies of patients who suffer from CRPS have difficulty to reverse this process.
Difficult does not mean impossible, however. In my experience, the bodies of CRPS patients can be supported and guided to once again obtain balance between the two autonomic states called the parasympathetic (“rest and digest”) and sympathetic (“fight or flight”) states. In order to do this, the Central Nervous System must be supported to heal, as discussed in my earlier blog. However, this blog is not about my treatment, or any successful treatment, but rather, on what comes after. What can a patient expect after beating the monster that is CRPS?
The “myth of remission” generally consists of the belief that once “cured,” patients will have no pain, ever. This may cause some alarm in you when reading this. Does this mean that you shouldn’t expect the pain to disappear? That you can’t dream of a normal life? That is not at all what I mean. Rather than thinking in absolutes, or black and white, you must envision life after CRPS as consisting of more of a gray scale. I prefer to see CRPS as “managed” rather than cured. The patient must understand that, while their pain levels may be drastically decreased and even gone altogether, they still inhabit a body in which the perfect storm once came together to ultimately result in CRPS. You are the captain of this body, the steward. You make decisions going forward that will help to support a body that was once so stressed, that it allowed CRPS to develop. Not all patients will become a 100% pain-free. However, the pain should be much more manageable, without the use of daily narcotics. Remission essentially is a process by which you regain trust in your own body’s ability to heal from within. Ideally, it involves a basic understanding of why/how you got sick in the first place, so that you feel more in control of your future health, rather than a sitting duck.
There is a big difference between living diligently and living in fear. Living in fear means that anything can “get” you, at any time, like a predator stalking you in the bushes. You are constantly aware that it is always close by, ready to pounce. It means you are a victim with no control. Living diligently means that you are respectful of your health, as you have seen the damage that ill health can wreck on your life, your psyche, and your loved ones. It means that you make daily choices that are most likely to result in health. It means that you are in control. Special care must be taken during times of great stress, such as the death of a loved one, illnesses, or injuries. Think of your body as a building with a roof that has been repaired. During a monsoon, you need to be extra diligent, or your roof may leak and ultimately collapse. Do not ignore any “leaks” of energy.
I think it’s also necessary to talk about the actual process of healing. In my experience, when patients fantasize about what healing will look like, it generally resembles a smooth road without many obstacles in which everyone lives happily ever after. In these fantasies of Nirvana, there are no drawbacks, healing happens fast (hence the word “cure”), and something brings about this healing from the outside in (a magical procedure, surgery, or drug). The reality is much different. For this reason, I thought it would be valuable to share the characteristics of healing that I have observed over time.
1. Healing is hard, hard work.
While healing can be extremely rewarding, exciting, and fun, it also involves incredibly hard work. Besides the initial work when researching treatments, as well as the practical problems you will have to sort out (financing, lodging, etc.), the actual process of healing can be very challenging. Essentially, you are signing up for a roller coaster ride of ups and downs, as well as rapid changes that all will require that you have to adapt. Your medications will have to be adjusted by a professional and you may go through withdrawals and detoxification reactions. In addition, you will have to learn what your new boundaries are. While you may soon feel like a butterfly emerging out of a cocoon, ready to spread your wings, your nervous system more resembles a newborn fawn, vulnerable and shaky at first as it acclimates. For this reason, I caution patients during the early stages to do only 25% of what they feel capable of doing. It also helps to enter the process of healing with the mindset that you are a willing, active participant, ready to bring whatever it takes to the table.
2. The body heals on a priority basis.
The body has a finite amount of energy available to it at all times. As the law of energy conservation states, energy cannot be created nor be destroyed, it can only be transferred. Why this is so important? Let’s pretend this energy is equivalent to a $100 bill. Each function and metabolic process in your body requires a predetermined amount of energy. For example, the simple act of walking may require $5. However, if you have an injury to your right foot, such as a twisted ankle, walking may now require $15 instead of $5. The additional $10 cannot be simply created, it has to be transferred from other areas. This may leave every other body part and function now lacking the energy to be performed optimally. The injured part is essentially ‘vampiring’ energy away from other parts of the body. The brain will not allow this “energy leak” to go on fruitlessly for too long. If an injury does not heal, after a while, the brain will start to ignore it.
Using the same reasoning, the nervous system will always focus most of its energy on the injury that threatens your survival the most. While CRPS may be your most painful injury, it may not be your most life threatening injury. If you have heart problems, for example, these problems may be silent but ultimately prove to be more deathly. Your body, in its infinite wisdom, knows where to focus its healing energy. Conversely, as the main sight affected by CRPS begins to heal, you may feel pain somewhere new as your body is cycling through old injuries as it now has the energy freed up which allows it to shift focus. This means that old injuries (such as disc problems) may suddenly hurt more.
In addition, my patients have frequently reported that as the limb/area affected by CRPS gets better, they will now feel the pain of CRPS elsewhere in the body for brief periods of time. This does not mean that the CRPS is spreading. It means that CRPS was already affecting other parts of your body, you were just not aware of it. Pain is used by the nervous system as a fire alarm of sort. It alerts the brain to areas that require healing. You cannot get better unless your nervous system is made aware of every malfunctioning area or body part.
3. You will lose your “pain callous.”
Healing means ups and downs rather than smooth sailing. Some days you may feel incredibly good, and other days may plunge you back into the bowels of hell. People who suffer from daily chronic intense pain will develop what I refer to as a “pain callous.” This is a protective mechanism used by the brain that prevents a massive daily leak of energy as discussed above. You cannot survive for long if you are hemorrhaging precious energy. For this reason, your brain is forced to start ignoring pain to a large extent. The minute your brain unleashes your inner healing, your body will return to a state where it experiences pain the same way normal people do. For this reason, you will now experience pain differently. This means that when the pain does come back, even though it won’t be worse, you will perceive it as more intense.
Coupled with this phenomenon is the fact that no matter how many times I tell my patients that ups and downs are to be expected, and that the pain won’t disappear for good after one treatment (except for a very lucky few), a part of them will still be crushed by disappointment when they have a bad day. It is one thing to hurt every day and have an uneasy acceptance of this daily pain, but to get excited, and have a glimpse of heavenly normalcy and then to hurt again, is petrifying. The first thought that will pop in your mind is: “Oh no, is the pain back?! Was it too good to be true?” As time goes by and your pain goes down again, and your new low pain levels become more stable, you will learn to trust your body’s ability to rebound.
4. Change is scary!
When you picture being healthy again, I bet you never expect that feeling better may be petrifying at times. That makes no sense, right? I have observed, however, that healing is, in fact, very scary. It took me a long time to understand this phenomenon. As humans, we are naturally scared of change. Change requires our nervous system to adapt to its new circumstances and it requires our lives to change as well. When you suffer from a chronic condition, you start to view yourself differently. Others start to view you differently, too. You getting better will require those around you to get used to a new you, too.
Your daily responsibilities at home change in some very practical ways. You may no longer help around the house, cook, or do your own laundry. Your relationships change also. In addition, if you have suffered from CRPS for a year or longer, you typically have been forced to change your circumstances in order to adapt. You may no longer be working. You may have given up on hobbies and traveling. You may have lost friendships and other relationships. You and your partner may have changed the way you relate to each other, as you became the dependent one, and your partner the caregiver. Healing may require practical changes in your relationships. If you share children with a partner, they may have gotten used to being a single parent essentially, and making all decisions on their own. They may also be used to being in charge of most of the decision making when it comes to other things, such as finances. While this may be a burden, it may also be hard to give back some of the power they have grown accustomed to. This does not make them controlling, simply human.
Getting better may leave you feeling a little bit like Rip Van Winkle, waking up to a changed world. You may have to start all over, in a sense. If you have ever observed a butterfly breaking out of its cocoon, you will know that this change has to happen very slowly. Luckily, most people will adapt after a few months and embrace life with a gratitude that can only come from literally having been to hell and back. After you return to normal life, you will always appreciate it in ways normal people will never understand. This will be a gift that you get to keep, one of the few positive things that CRPS will bring to your life.
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Mine came out of no where and after countless tests and drs visits, is crps is what they are thinking. Does anyone have tips on who I should be seeing and how I should be treating this, it’s mainly in my left lower extremity and it’s debilitating. I’m 24 🙁
Hello Natalie. Please let us know what state you live in so we can assist.
Could someone send me a list of doctors for Alabama? My daughter has CRPS and I hate seeing her like this. The hope of remission and a pain free life is my dream for her. She is only 16.
I too have RSD from a fall in 2013 when I had the fall dislocated both shoulders but landed on my ✋. I have excruciating pain in both hands some day its unwarranted and the doctors in my area do not know how to treat the pain as I’m very sensitive to a lot of medications so I suffer daily with my hands. So please keep me posted on any treatment that you hear about. I’m in search of a good doctor.
I ended up with RSD/CRPS years ago. The pain was excruciating to say the least. Even the slightest touch would send me into tears! The heat, swelling, modeling, and knife like feeling I would get was just awful. Totally debilitating. I too had blocks, but never lasted long at all. The daily medications I was on excluding the pain meds were hytrin and neuronton. I ended up with a spinal cord stimulater. I was considered to have a more severe case. With all of the above and physical therapy the pain began to subside. After years of working through this I was finally able to return to work, although I was still on pain medication. A truely difficult situation I must say. Over time and a different job life became somewhat normal. Then the monster named RSD would surface its head again ( there by “the myth” the writer is regarding to) the pain not nearly as bad, but a pain you never forget. A monster that sends you right back to the memory of that debilitating pain that brings the fear and panic right back to the surface. In my situation, yes, its only a remission. Grant you it only last between a day to a week, and the pain is not nearly as bad as it once was. I want to be clear in my life the “monster” does rear it’s ugly head again. I have come to this realization that once again all my symptoms are back, and due to an injury I can’t use my stimulater to help with the pain. I wish everyone more luck than I have had.
I will say I have been fighting this for more than 15 years, so yes life goes on but with me I still have a few bumps in the road. I even thought it was gone at one point and stopped going to see my Doctor. I am not up to date on the new treatments available. My wonderful Dr Michael Stanton-Hicks is now retired, and I too am in search for a good Doctor. Guess I won’t post this
I ended up with RSD/CRPS years ago. The pain was excruciating to say the least. Even the slightest touch would send me into tears! The heat, swelling, modeling, and knife like feeling I would get was just awful. Totally debilitating. I too had blocks, but never lasted long at all. The daily medications I was on excluding the pain meds were hytrin and neuronton. I ended up with a spinal cord stimulater. I was considered to have a more severe case. With all of the above and physical therapy the pain began to subside. After years of working through this I was finally able to return to work, although I was still on pain medication. A truely difficult situation I must say. Over time and a different job life became somewhat normal. Then the monster named RSD would surface its head again ( there by “the myth” the writer is regarding to) the pain not nearly as bad, but a pain you never forget. A monster that sends you right back to the memory of that debilitating pain that brings the fear and panic right back to the surface. In my situation, yes, its only a remission. Grant you it only last between a day to a week, and the pain is not nearly as bad as it once was. I want to be clear in my life the “monster” does rear it’s ugly head again. I have come to this realization that once again all my symptoms are back, and due to an injury I can’t use my stimulater to help with the pain. I wish everyone more luck than I have had.
I will say I have been fighting this for more than 15 years, so yes life goes on but with me I still have a few bumps in the road. I even thought it was gone at one point and stopped going to see my Doctor. I am not up to date on the new treatments available. My wonderful Dr Michael Stanton-Hicks is now retired, and I too am in search for a good Doctor.
To Mary Ferlauto and anyone else that is willing to please, please help a newly diagnosed woman in this nightmare called CRPS.
If your excellent doctor is still practicing, do you know what part of Texas they moved to? I live in a small Texas town, Grandview, TX 76050, within an hour of downtown Fort Worth. I just had a lumbar sympathetic block done a few days ago and awoke with pain so very much worse than before. I didn’t even know that was possible!
I’ve been disabled & living with chronic pain for 19 plus years due to an uninsured drunk driver breaking my thoracic & cervical spine in several places but I fight hard & have always been able to walk until now. And I just thought I knew what horrific chronic pain was! I now completely understand why CRPS is nicknamed “The Suicide Disease”.
Due to a weakened immune system in June 2020, a couple compressed fractures showing up right after quarantine started, telemedical calls instead of in person doctor’s appointments & lack of immediate MRI, again because of quarantine & lack of getting good medical help right away because of beginning of quarantine almost dying & a bit of a complicated tale of how that happened, I ended up with cellulitis on lower legs, which healed quite quickly & beautifully but left excruciating pain, constant muscle spasms and being constantly electrically shocked by my own nervous systems which has been diagnosed as CRPS in my lower left leg & foot
I’m praying anyone that has been dealing/living with CRPS will be willing to help me in anyway I’ll be forever grateful Thanks to any and all that have shared their own experiences to help others. Only you can fully understand how scared I am at this moment!
We can send you our full TX list!
Hi,
I have CRPS and Small Fiber Peripheral neuropathy. I live in Rockland County NY 10984. I have a doctor in NYC who is very abusive to me. She put an Inthracal Pain Pump in me that doesnt do much for the pain. I wrote into Flowonix for a list of doctors and they sent my letter directly to my doctor instead of answering me. I had a great doctor that moved to Texas and 6 years later I still cant find a doctor to help me. Is there anyway you can help me find a doctor. If its a good doctor that can really help me, i would even consider moving. Thank you so much.
I wish you would have phrased and written this article with more hope and understanding of the truth. Since you and I and every other professional health and wellness practitioner out there do not know the exact power and potential of the human body, we do not know it’s potential to rid itself or unravel from any perfect storm. Yes, diligence is necessary; yes we have to be smart about what we do for our body, but calling healing a myth is just not fair to anyone. This article just undermined people’s need to believe, and that is what heals. The most important aspect of healing: When we question our mind and our own soul, we compromise our body and any potential it has to heal itself.
Right? I remember reading this shortly after my diagnosis in 2018, and it was incredibly depressing. I decided not to listen and hope for something better. With other sources claiming full recovery is possible, that’s what I aimed for. I didn’t experience a spread and my remission is so much better than this article describes.
I’ve been in remission for a year now. The only signs now that I ever had CRPS is a mild discoloration of the area that is only noticeable in certain lighting. If I touch it firmly, it is slightly more sensitive than my other limb in the same spot. That’s it. My pain is 0/10 every day. I can live my life completely normally, and nothing causes me CRPS pain or swelling or discomfort. I’m a 30 something woman who is not even particularly fit. I’m just a regular woman who believes in herself.
“When patients who suffer from CRPS dream of remission, they picture themselves back in the life that they used to have before CRPS. They picture themselves ‘cured,’ and as having no pain ever.”
Well, my dream came true. The truth wasn’t more complicated for me. I don’t know if this is possible for everyone, but I am proof it’s possible for some. My experience is no myth, so let people hope and dream of this very real possibility. I hate to think of how many people may have read this page and gave up on ever having their old life back.
Hello, Pam. Please let us know if you would like to write about your remission journey!
Yes Pam, please share with us all what your treatment and experience was.
Pam,
I am 67 years and I had fallen down flat on my face while running around my apartment in October 2018 and took direct hit on my right hand and left foot. At that time, there was some some small cut on my right hand and I washed it and applied some antiseptic cream and forgot about it. After some days I felt that there was some problem of touch in my right hand and also tingling in the fingers of hand and left foot. I visited a Neurologist who said that it was a case of peripheral neuropathy and gave me Pregabid 75 and Rejunex (Vitamin B12). I took the medicine for some months but there was not much relief. Since the inconvenience was not much, I carried on without seeking anyone else advice.
I had another fall flat on my face on 1st Dec 2019 with the same my left foot and right hand taking the hit on the floor. This time I had pain on my right hand as well as left foot.
After a couple of days, it got swollen with severe pain in both the limbs. After visiting a number of doctors, finally one doctor diagnosed it as CRPS on 30th Dec 2019 and treated me with Gabapin NT (400/10)and Dexamethasone 4 MG for almost two months. This brought me relief from the edoma on my hand and foot. And they advised me for physiotherapy and in the meantime changed my medicine to Maxgalin NT (75/10)and Eslizen 400mg. The constant medication has brought about weight loss (lost almost 7kg weight in two months and also loss of muscles in my arms. I can not hold anything on my right hand and feel severe pain if there is even minor push on my left foot or right hand.
Now I find that edoma (swelling) on my right hand and left foot has again come back with accompanying pain. There is no relief from the normal physiotherapy which involved some basic exercises of my hand and foot.
I request you to please guide me and please treat my CRPS. I Shall always be grateful to you for your reply and suggestions.
Request you once again to help me in my CRPS condition.
Warm regards,
KS Rajpal
Mob 9910908625
Hello there! Can we help you find a new physician in your area? If so, what is your zip code?
Hi,
My message above was to Alexis Davis, or anybody else that can help me find a doctor in NY about 40 minutes from NYC. I also live close to New Jersey and Westchester NY. Thank you everyone. God Bless you all.
Hi Pam please could you share what treatment you received to get where you are today, I was very recently diagnosed with crps after breaking my right ankle 4 months ago, the pain is excruciating, what medications were you taking and also physical therapy? I would be very grateful for any information and advice you could give me, kind regards Gail Griffin