ESTIMATED READ TIME: 15 MINUTES
Recovering from Chronic Illness: Assembling a Healthcare Team and Plan
Read Part 1 Don’t Be a Superhuman
In the summer of 2002, I had a very bad car accident that initiated the process of becoming chronically ill. 11 years later, I was still struggling with these illnesses (fibromyalgia and chronic fatigue syndrome/ME) and doing everything I could to not give up and keep seeking answers and health. You can read a little more about where I was in May 2013, 11 years from my initial diagnosis, from my post (You are Not) BROKEN. This is a blog series about that journey and what I did along the way that ultimately led be to being healthier than I was pre-diagnosis. DISCLAIMER: Fibromyalgia and chronic fatigue syndrome are very unique and complex illnesses. I am not suggesting that my path to wellness will work for others. I am hoping by this series that I can encourage others who are ill on their own journeys to wellness. Please be sure you have a good doctor and consult with them!
I was “fortunate” enough to have a jump-start on finding my team of doctors as I had had my fair share of gymnastics injuries. Along the way, I found my acupuncturist and traditional osteopath (actually, two of them) which were critical to my healing and also building the foundation of my healthcare “village.” At the scene of my accident, I called and made an appointment for acupuncture in every attempt to be proactive, which has always been my modus operandi since day one.
I assure you this post will already be long enough, so I will save you the 13 years of history of my treatments, and rather focus on the ones that worked for me. But first, a list of what I did along the way, more or less in chronological order of when I started them:
- Traditional Osteopathy
- Medication + Supplements
- Myofacial Massage and Rolfing
- Physical Therapy
- CFS/ME/Fibromyalgia Specialist
- Trigger Point Injections
- Elimination Diet
- Changed my Diet
- Water Physical Therapy
- NAET (Nambudripad’s Allergy Elimination Techniques)
- Yoga + Low-Impact Exercise
- Nutritional Shakes (Shakeology)
- Change in relationships
- Moved to France
And, the short list of what didn’t work for me in recovering from fibromyalgia/chronic fatigue:
- PHYSICAL THERAPY
This was just not particularly relevant to my actual condition and was prescribed by a western-based doctor as an canned form of treatment for an injury. Yes, I had acute injuries, but my body needed to be treated and rested, not necessarily strengthened. For ME, this wasn’t productive and it was possibly counter-productive at that time that I did it (which was within the first 6 months).
- TRIGGER POINT INJECTIONS
These may have made a TINY difference, but really, nothing noticeable that particularly impacted my healing journey. The spots that were treated are still about the same as they were before treatment and if they have improved, it is thanks to chiropractic, not the injections. At the time, I think these gave me a TINY amount of pain relief.
- ELIMINATION DIET
This helped, but it wasn’t enough to get me over my allergies/sensitivities and was later replaced with (very effective) NAET treatments.
This will fall on both lists. I had so little quality of life that each time we added a new medication, it wasn’t without good reason. But, I became a bit of a science experiment and was, in my opinion, over-medicated. Also, some of the meds were band-aids over the bigger problems that then exacerbated my health in general. I am not saying avoid all medications, nor would I do that if I went through what I did all over again, but I would definitely avoid stimulants (although some make a strong case for them). They just gave me false energy (which I desperately needed to survive while working) that allowed me to continue doing things in my life that I shouldn’t have been doing. Thus, the fatigue was exacerbated and continuous. On the other hand, I had some great luck with some other medications in managing some of my symptoms while I was attempting to further heal the root causes.
- WATER PHYSICAL THERAPY
I’ve read awesome articles about people healing through time spent in water. I know someone who is “miraculously” healed when he is in Caribbean waters (which is actually more the location effect, the the presence of the water is what specifically gives him relief). I did mine in the pool and maybe not long enough. I generally enjoyed it but no measurable results.
So, if you are doing the math, that leaves a considerable list left of things that did work for me in one way or another… Things that made a tangible impact on my healing and I believe played an important role in the recovery I am experiencing today. I stress, this was MY JOURNEY AND NO TWO ARE THE SAME. I also must stress that health care professionals are not all equal, especially when, 1- in the realm of natural health and, 2- when seeking to treat chronic illnesses like fibromyalgia, ME (myalgic encephalomyelitis) and chronic fatigue. The key to effective treatments is finding the right provider that is a great listener, diagnostician AND practitioner.
I’ve been getting treated with acupuncture on and off for almost 20 years. I’ve now seen 5 acupuncturists and can definitely say you need to find a good one, but when you do, this is such a fantastic modality to have on your regular treatment cycle. Acupuncture can treat so many things and can work on both healing the system and treating the acute issues. When I had my accident, acupuncture was my first treatment and when moved to Paris, the first practitioner I found for my new “team” was an acupuncturist.
- TRADITIONAL OSTEOPATHY
Two of the three most brilliant doctors/people I know are osteopaths (Dr. Larry Nassar and Dr. Laura Rampil). For me, my osteopaths were THE most intuitive as to what was going on in my body and HOW to treat it. If I could have packed my DO and moved her to France with me, I would have!! With illnesses as complex as these, I think a good traditional osteopath is invaluable as they work on the body as a whole and what is actually going on in the body at the moment from a physical and energetic perspective. I also find they have the perfect blend of appreciation for natural health and western medicine.
My first experience with a chiropractor almost swore me off all chiropractic forever. There is a lot of overlap here with traditional osteopathy, so this one didn’t make my list until years down the road. But I did start to see shifts in my spine (which started out being described as that of someone in their 80s, and improved to that of someone much nearer my age) and nervous system function. Along the way I switched to another chiropractor who rounds out my list of the three most brilliant doctors I know (Dr. Joseph Fuller). The diagnostics he did with me and the way he could isolate the exact place I was having some sort of impedance were out-of-this-world. As he is also an acupuncturist and specialized in NAET, his knowledge base was rich and diverse. People travel from other countries to see this guy!
- MASSAGE / ROLFING
Here, again, you have to find a GOOD ONE. But when you do, they can make a huge impact on your healing and overall wellness. If you can find one that is a Rolfer or at least very anatomically focused, you will get more than released tension and move into the realm of actual structural treatment. Mine helped correct my posture, normalize my gate and completely change the texture of my soft tissue from that of iron rods to relatively normal. Mine (Jenny Rock) is also on my list of amazing healers, not to mention all-around amazing human beings. It took lots of hours on the table, but we made serious progress. She was also the source of several of my other referrals, which is definitely a huge advantage to finding other practitioners to round out your team.
Through my osteopath, I was referred to the Hunter-Hopkins Center in North Carolina. I continued to see Dr. Lapp for a few years both in person and remotely through phone appointments. The most critical part of adding him to my team was the way he both validated and helped me re-frame my understanding of my illnesses and most of all my limits. As one of the most respected doctors in the field, he was able to explain what and why I was experiencing in ways no one else could, validate that what I was experiencing was not only real but also had an explanation within the scope of fibromyalgia and chronic fatigue, and help adjust my treatment plan and lifestyle moving forward. He was the one that told me I MUST stop working, and, without that step, I’m sure I would have become irrecoverable (as he warned).
I am a child of two psychologists, so I believe this can be vital in many situations. I had some trauma from when I was a child that was addressed with EMDR (Eye Movement Desensitization and Reprocessing) and I found that to be effective and fascinating. Likewise, when you lose all you know to an illness, there is a lot of emotional pain and scarring that comes along with that. We often feel so helpless and depression is not only common with chronic illness, but something that shouldn’t be taken lightly. As trauma is often a common pre-disposing factor to fibromyalgia and chronic fatigue, counselling that works on those trauma issues can be incredibly helpful. Counseling also helped me process some big steps I had to take along the way to continue my healing journey.
- CHANGE IN DIET
I have always been very interested in health and healthy food, always striving to give my body it’s best shot at being healthy starting by what goes in my mouth on a daily basis. Along the way, I came to the conclusion that I would try a plant-based diet as there is a lot of evidence supporting it as being the most healthy. I did VERY WELL as a (nearly) vegan and started gaining some energy back, got my IBS under control and lost a bit of weight I had struggled with due to lack of activity and medication. I do not believe one diet fits all, but at that point, plant-based foods made me feel best. (I have since re-introduced some animal products to my diet as my body’s changing needs dictated.)
This one was a game-changer for me. One of my docs suggested I do some allergy testing as we could not make a dent in my fatigue. She was convinced there was something that I was eating that was “pi$$ing off my system,” as she put it; she suspected food allergies and possibly leaky gut syndrome as a result. We tested a large variety of foods with the ALCAT test and a good 75% of them came back as problematic for me on some level. Next came a very strict elimination diet, which was nearly impossible since I was intolerant to practically everything. My osteopath suggested I try NAET as a way to start clearing some of those allergies so I could eat balanced nutrition again. Through NAET, we found a zillion (almost not an exaggeration!) more things—from foods to chemicals to hormones to neurotransmitters to the my spouse’s DNA—that I was reacting to. The best thing was we could, 1- test all the things! and figure out where the problems were, and then, 2- effectively treat them through the utilisation of kinesiology and acupressure points. This stuff is crazy cool. Since I was basically always in this constant state of reaction (which my body sees as a state of crisis), I could have never really healed without this step. It allowed us to clear out hundreds of things that put me in that reactive state, thus giving my body a chance to heal and fully benefit from all of the other treatment it was getting. Additionally, we were able to narrow down the deep-rooted culprits.
- YOGA + LOW-IMPACT EXERCISE
This one is tricky as the timing has to be just right. There was a point where I was so ill that I don’t even think most forms of yoga would have been a good idea. Perhaps with the right type (like yin yoga), it would have been helpful, but you have to know what to look for in a class or instructor. When I did start yoga, I was able to find the perfect studio with a perfect match of instructors. Not-so-ironically, although the recommendation came from my cousin, my massage therapist and then-future acupuncturist were both connected to this studio. The good people are always connected! Doing yoga with these instructors allowed me to be incredibly attentive to my body’s needs and protect all of my weak spots that could cause me to flare, and I was able to reclaim my body as my own after many years of feeling trapped and betrayed by it. Yoga also led me to be able to start some low-impact exercise at home with the T25 video program. This was a HUGE step for me as, 1- it allowed me to become physically stronger (actually, in the best shape of my life, even more so than when I was a competitive gymnast) and, 2- regain hope of significant healing and quality of life. I was VERY hesitant to try a workout program such as this, but also desperately motivated to be well. Since there is a low/no-impact modifier in the program, I followed her entirely and also worked in a few extra rest days as my body dictated. The key to adding in exercise in any chronic illness recovery program is to do it at YOUR pace, LISTEN to your body and stay within its limits. The limits will gradually increase, allowing you to progress, but do not follow the traditional push-push-push concept in fitness. Remember, your goals are different than those of most others working out.
At one point, I was taking over 30 pills a day between all of my medications and supplements. Some of these helped a lot, some of them I was just taking with the hope that maybe they were helping, and some probably did more damage than good, as I mentioned above. Nearly two years ago, I was going through a really tough spot and barely had any appetite. My osteopath told me if necessary I had to force myself to eat as nutrition was my medicine. Knowing that most days I could only manage to eat my green smoothie, I started looking for ways to get as much as possible from this one meal. I happened upon Shakeology and was honestly very skeptical to start. I am a huge proponent of whole foods and nutrient density, but also wasn’t so sure that this shake could be as great as they said it was. I researched and researched and finally felt confident enough to try it. Within a week, I was decreasing my medications (including my sleeping med, which was the most difficult one for me to come off of, as I had been trying for years at that point), and within a few months, I was down to only 2 pills. TWO PILLS. FROM THIRTY. This is partially due to the fact that many of the supplements I was using were included in the ingredients of Shakeology, so I no longer needed to purchase and take them separately. Also, I believe all of the good, easy-to-assimilate nutrition in the Shakeology aided significantly in regulating several of my issues and thus eliminated the need for them to be treated with medication. Shakeology has been a daily part of my nutrition nearly every day since, and I am currently in the process of weening off my VERY LAST MEDICATION (throws confetti)!
- CHANGE IN RELATIONSHIP(S)
One day I’ll elaborate on this more as I believe it is critical—both as a step toward healing and as a topic of conversation—but I will start by saying: “toxic relationships are toxic.” Just as physical toxins make you sick, so do emotional ones. Have you ever said “so-and-so makes me sick?” There is a reason behind the existence of this phrase. Never underestimate the power of having good, healthy people around you, nor underestimate the power of getting the toxic ones far away from you. When you are in a toxic relationship, your body is always in a state of defense, your adrenals are always “on” and you are basically in crisis/survival mode. Healing functions stop in this mode and if you are there long enough, your central nervous system can re-wire to all sorts of dysfunctional norms. I started to experience the instant healing effects of being out of this type of toxicity when I would travel, and ultimately this was essential, above every other step, to be being able to be healthy. All of the others were good and necessary, but somewhat blocked and ineffective until I took this (massive and admittedly terrifying) step.
- MOVED TO FRANCE
There is a known phenomenon called “the location effect” where some experience instantaneous healing when in a particular geographic location. Often it is documented in a costal location such as Caribbean islands, but for me, I am much better nearly everywhere but Florida, and especially here in Paris/France. Texas is the only place where I have been as ill as Florida and Paris is where I have experienced my maximum health. I won’t pretend to have a perfect explanation for this, but I believe that there are many reasons that I experience better health in France. The food is cleaner, the lifestyle is more mobile and has more regular inclusion of fresh air, the climate is relatively mild (heat and I do NOT do well together), and geographically, I think the magnetic/energetic properties that exist here just make my system happier. Remember, everything that exists is energetic. I don’t say this to sound new-agey; scientifically, everything breaks down to energetic components. I still have bad days in France, but in general my health is DRASTICALLY better just for being here.
So there you have it. The summary of what I did over the years in effort to heal and recover from my fibromyalgia and chronic fatigue. If you have any specific questions, feel free to drop them in the comments below as I’d love to answer them in any way I can! Next time around I’ll talk about the concept of actually healing the body and what that looked like for me.