Kristin was burning the candle at both ends
I was a 29-year-old career woman who had been burning the candle at both ends for as long as I can remember. I had a high-powered job that required weekly travel, both nationally and internationally, consulting for executive management teams in Fortune 500 companies that were in need of massive overhauls. Years of enduring high pressure and working late nights combined with constrained timelines began to eat away at my body, resulting in acute and recurring infections.
Prior to my corporate endeavors, my family heard from me so much, they joked about not being able to get things done, and my friends admired me, as I seemed to know everyone in town and made friends anywhere and everywhere I went.
As a busy consultant, life was very different. The phone calls home were few and far between and my friends didn’t bother calling me anymore. They knew I was essentially married to my job and inundated with work— keeping up with client demands while struggling to maintain my shining professional reputation.
The Ignored Signs
My stress levels were at an all-time high and sleepless nights were the rule, not the exception. As chronic fatigue symptoms set in, I began to take more of my ADHD medication in an attempt to regain the control that was slipping out of my hands.
The warning signs (increased symptoms) were there – but mostly ignored
My body began to give me signs, though, that it could not keep up. The high stress, stimulants, and inconsistent sleep patterns led me to begin taking sleep medications for the first time, which left me feeling groggy and in a fog the next day.
My type A personality demanded that I push through my symptoms for fear of appearing weak and the stress continued to take its toll. I had pneumonia twice in one year and began to develop other recurring infections. When my body finally forced me to take a short break, I ended up sleeping (with the exception of a couple of restroom breaks) an entire weekend. I also began to have sensitivities to chemicals, foods and other things, as well as odd rashes that I, determined to ignore my body’s signs, wrote off as a fluke.
As I continued panting away on the corporate leash, my muscle and joint pain began. First, I experienced wrist and hand pain. The pain was somewhat manageable in the beginning – a quick 10-minute massage at the local nail salon, stretching or trying other do-it-yourself remedies – got me through the day. Over time, though, the pain became so bad I had to take a day off work. Then it was two days, and then more. If I was able to take any time off on the weekends, I’d sleep nearly the entire weekend.
The Breaking Point
And then came the break….
Something was seriously wrong. Then it happened…my body finally said NO MORE.
One day at work my hand became completely paralyzed and I could barely walk on one leg. After this, I became so fatigued and weak that I was unable to stand long enough to take showers and could not lift the glass of water from my bedside table.
I saw doctors in many different specialties and even made it to the prestigious Mayo Clinic. After conducting test after test, they concluded I had active Epstein Barr and enterovirus infections plus small fiber neuropathy, endocrine disorders, IBS, gastritis, fibromyalgia, and myalgic encephalomyelitis.
I was told my prognosis was bleak and was put on so many medications that I didn’t know if my worsening symptoms were a result of the disease or side effects from the medications.
Feeling worse than ever, I entered the Pain Management Program at the Mayo Clinic. The program initially gave me hope since I thought that being with others affected by similar illnesses would give me a sense of community. One of the programs rules, though, was that we were not to talk about our pain. Plus, I was so sick I was only able to complete 3 days of the 14-day program.
This was a dark time. My many diagnoses, my inability to complete the Mayo Clinic program, the absence of friend and family support, my inability to work and my increasing debt levels left me physically, mentally, emotionally and spiritually in despair.
Healing Practices Help
I sought out counseling to help cope with my physical deterioration and the many impacts it had on my life. Desperate to find a way out of the darkness, I established a wellness routine that included meditation (specifically chakra meditation), prayer and turning inwards for solutions.
Soon after incorporating these practices, I began to get in touch with myself and attract into my life remedies, people and solutions that proved to be healing along the way.
I began to understand that in order to get well, I had to strengthen my spirit through relaxation, compassion and devotional techniques. I improved my mental dialogue about illness and wellness.
Improving my nutrition by transitioning to primarily a plant-based, dairy & gluten free diet and, for the first time in my life, creating a balance between rest and activity, helped decrease my symptoms and bring my body closer to wellness again. Through this process, I developed a greater understanding of energy medicine and how it influences all aspects of life. I began to focus on healing my mind, body and spirit.
I spent lots of time reflecting, practicing mindfulness, identifying and changing behaviors and staying away from people who were no longer supporting me. I focused on being patient and compassionate towards my body.
I also found communities, programs and literature that encouraged and supported me – some of these included healthrising.org, cfsselfhelp.org, Gupta Amygdala Retraining, Chronic Fatigue Syndrome & Myalgic Encephalomyelitis Self Help Facebook group, Dialectical & Cognitive Behavioral Therapy (a form of CBT that focuses on living in the moment, some local communities including spiritual groups and an all-women’s group called STARS, Managing Chronic Fatigue Syndrome & Fibromyalgia by Bruce Campbell and Sleeping Beauty Wakes Up by Patt Lind-Kyle.
Mind/body techniques, diet and alternative medicine (LDN, CBD Oil) have helped her heal
I nurtured my body by stretching, doing light yoga when possible, eating a clean diet with supplements (which differed depending on my most significant symptoms at any given time), and experimenting with chiropractic and acupuncture treatments. My spiritual work included regular energy treatments (chakra healing), daily meditation for at least 5 minutes a day, prayer (including utilizing healing angels as referenced by Anthony William in his book Medical Medium), practicing gratitude and journaling. I also sought out the advice of spiritual and wellness counselors.
CBD Oil and Low Dose Naltrexone Provide Further Boost
Most recently, my path has led me to CBD oil and low dose naltrexone (LDN). Through these remedies, I have experienced even more improvement. CBD oil has reduced my exercise intolerance, decreased nerve pain, reduced inflammation, increased my immunity, and helped with sleep.
I began with three drops twice a day. Every three days I added an additional drop to each administration, and I am currently taking 20 drops twice a day. I use 500 mg THC free CDB oil in the morning and 750 mg CBD oil at night. (You can purchase it at hempworx.com/kkollinger.)
LDN has significantly reduced my stomach and muscle/joint pain and resurrected my previously non-existent libido. I began with 1.5 mg, and after 14 days, I increased to 3 mg. I am now on 4.5 mg.
Through my path thus far, I’ve learned that choosing to see that there is a purpose behind the pain helps. Having faith over fear is very important as well, especially during those grim times that happened most frequently during the onset of disease. Through the initial stages of disease, I frequently experienced fear, especially as I experienced increasingly more loss in my life. Nevertheless, as I changed my perspective and realized fear not only feeds the illness but also blocks attracting what you want in life, I learned to trust.
Conjuring within you a sense of healing, even if you don’t feel this way, and doing whatever you can to feel happy (or at minimum, better than you are) in those hopeless moments puts forth healing momentum for me. Healing was never a straight line for me, nor is it one way. At times my health has fallen back.
As my health improved, though, I’ve been able to relax my diet and other practices. Healing doesn’t always require strict adherence to a plan because this is often confining and shame producing. As human beings we are constantly shifting and experiencing new things and our perspectives change. What may have been right for us and our bodies at one time may be totally different at a later point. I spend at least 30 minutes a day on mindfulness type practices.
Kristen has gone from about a 1 to about a 6.5-7 out of 10 using mind/body/mindfulness practices, CBD oil, LDN and others
Finally, as cliché as it sounds, when one door closed in my life, another one opened. My illness closed many doors for me including with friends and my job, but someone or something more suitable or fitting has always entered my life in its place.
Today – Not all the Way Back But Vastly Improved
Even though I still struggle significantly with my symptoms, I am now the best I’ve been in 8 years and am able to work part-time. On a scale of one to ten with ten being perfectly healthy, at my worst I was a one. Now I’m about a 6.5-7. The fatigue and other symptoms are significantly less, and I am even able to get in a workout on certain days without exacerbation of symptoms (this was unheard of until the last month).
I am currently working as a Chiropractic Assistant where I help others improve their health. I also do community outreach where I spread the message of taking a proactive approach to health. Additionally, I am a Reiki Master and Coach and am continually in pursuit of becoming the best version of myself.
Sparkle: When we look internally and become proactive in our health, we can get back in touch with who we are and what we are capable of. Life, even with its sometimes amazing vicissitudes, becomes a more welcomed adventure instead of, as it was for me for years, a never-ending battle.
More Resources
- A CBD OIl primer for ME/CFS and FM is coming! (I promise!)
- Check out other people who’ve had success with mind/body work here
- Check out Mind/Body/Pacing Recovery Stories here
- Check out Alternative Health Recovery Stories here
Congrats Kristin! Thank you for sharing! I wish you continued success! Your story inspires hope! I have always wanted to try LDN. I have tried CBD oil and it does help me a little. Cort, thank you for well balanced coverage. You may catch a little friendly ? from the Never GET and CBT ME/CFS crowd but I won’t be one of them, not today. Every individual afflicted with ME, CFS, SEID, and Fibromyalgia has a different level of severity and a different level of exercise tolerance. This success story is going to reignite a discussion on the highly debatable evolving/devolving criteria for diagnosis and proposed treatment regimens. I look forward to quantitative and qualitative discussion. Right now, I just want to ? and thank Kristin once again for sharing her personal journey with us all!
What I loved about Kristin’s story is that she had a classic case of ME/CFS/FM (viral reactivation,wenterovirus infection, small fiber neuropathy, IBS) and yet she’s been able – over quite a period of time – to improve using methods that aren’t generally expensive and in many cases cost nothing at all. They just take time and dedication.
Dr. Klimas has said ME/CFS/FM is a stress response disease – not in the sense that stress causes it but that the stress response systems – the autonomic nervous system, HPA axis and immune systems – are at the core of it.
My guess is that Kristin was able to relieve the stress on her systems with her mind/body work and then further her progress with the LDN (microglial inhibitor) and the CBD oil. Hopefully she will find more treatments that will take her all the way.
Her approach won’t work for everyone, for sure, but it’s probably a good pathway for some. It does take a lot of work!
Yes! My body was clearly taxed for a long period of time! In retrospect, I am fortunate to have had the opportunity to rest to begin my healing process!
Thanks, Christopher. LDN is so great and it is surely worth a try!
Bravo Kristen! You stayed open, showed daily discipline, persevered, and are now an inspiration to others. Thank you for sharing your journey.
Absolutely, Leigh! And thank you for being such a strong source of support!
A lot of different success stories, but I think there is one element common to all of them. “Pacing”, or the right amount of activity of the right intensity. A lot of people are “trying everything” but failing because they are either not doing enough exercise and movement, or (my problem for 20 years) they are too “driven” and always trying too hard. It is amazing how many different things help in combination, but I say that the pacing is the thing that makes or breaks the overall “protocol”.
Then there is the kind of movement; doing straight-out movement routines (just as best you can, like you did with Yoga) rather than cardio or “muscle strengthening” is definitely the best. I say muscle strengthening is to be completely avoided, and cardio at any level above fat-burning intensity (65% of maximum), likewise – to be avoided.
Early on in my process of reversal, I discovered the benefits of using a spa pool to do the movement routines I was attempting. The muscles are warmed up and the body weight is supported by water.
But there are complications because getting too hot is also problematic for post-exertion malaise. So I made sure to cool down quick afterwards (cooler water, fan, aircon, whatever).
Philip – Thanks for your response and such wise words! Yes! Pacing is key. I think a lot of us impacted by these diseases have type A personalities and want to continue feeding this personality type even while we’re sick. I always remember that we can’t heal in the same environment in which we got sick. Thanks again.
what is “straight-out movement routines”
How did you work through the foggy brain, cognitive issue?
no matter how u did it, i know it is not easy the meditation routine for our too tired brains to focus and concentrate.
congratulations and wish you continuous improvements
Dearest Kristin,
So sorry for having been sooo far away. I am not talking geographically, but as your grandfather, family and being a physician in addition, it should have made me “see” things in perspective and understanding. The distance and the dailies in our lives, could be considered as an excuse, for my taking it on the “light shoulder”and letting you “swim” all by yourself.
Looking at you now, retroactively, let me give you credit, that even if it took such a long time, i.e. years experimenting, with all kind of medications, modalities , people, institutions. and lst not least the “tincture of time”.
You were doing it practically almost totally alone, by yourself. It is a sign, that you simply were tough, did not give up. In spite of the loss of support, from your friends. You were a fighter and last not least, you came inally single handedly out, at the end as a winner.
Dear Kristin, allow me, to congratulate you, for going though “thick and thin”, mainly on your own, except the support,from your family.
love, Opa
What a beautiful comment from a family member.
One thing I was struck by Kristin’s story was the truly awful situation she found herself in after the failed Mayo program: increasing debt, unable to work, without support, with a lot of problematic and difficult to treat diagnoses – it’s a pretty common story in ME/CFS but still the difficulties so many face are breathtaking. (Talk about stress!!!).
I echo what Cort wrote. It is just lovely that you responded to your granddaughter’s story with your supportive comments – and on a public forum – and speaking as a physician as well! Thank you for such a meaningful and wonderful gesture.
I completely agree with you! Feel so grateful that he took the time to read and offered such heart-filled words. I appreciate your readership as well!
Opa – Thank you soo so much for your kind words. I got a number of comments based on your response to my article. Thank you for taking the time to read. Much love, Kristin
Beautifully written by you both and truly extra appreciated by this Omi who is also going through EBV REACTIVATED. You give me hope! Danke from another Omi
I’m do proud of you Kristin! You have come a long way and I see you shining into the future! ?
Thank you sooooo much, Julie!!! Love you and thanks for being one of the only that has stayed by my side from its origin until now. Love you!!
“I sought out counseling to help cope with my physical deterioration and the many impacts it had on my life. Desperate to find a way out of the darkness, I established a wellness routine that included meditation (specifically chakra meditation), prayer and turning inwards for solutions.
Soon after incorporating these practices, I began to get in touch with myself and attract into my life remedies, people and solutions that proved to be healing along the way.
I began to understand that in order to get well, I had to strengthen my spirit through relaxation, compassion and devotional techniques. I improved my mental dialogue about illness and wellness.
Improving my nutrition by transitioning to primarily a plant-based, dairy & gluten free diet and, for the first time in my life, creating a balance between rest and activity, helped decrease my symptoms and bring my body closer to wellness again. Through this process, I developed a greater understanding of energy medicine and how it influences all aspects of life. I began to focus on healing my mind, body and spirit.
I spent lots of time reflecting, practicing mindfulness, identifying and changing behaviors and staying away from people who were no longer supporting me. I focused on being patient and compassionate towards my body.”
And here you have it, the one thing that those of us who recover have in common.
Matt – Yes!! The mind/spirit component is huge. I realized by strengthening the spirit and mind the physical healing also follows. Spiritual practice enabled me to literally be led to other things that have benefited me through my journey.
I too find that mindfulness, meditation, prayer and journalling are a great help.
As Kristin intimated, intuition seems to play a big part in management and recovery too. What worked one week, or day, or month … may not work every time. I notice I have setbacks when I start to compare/compete with what worked yesterday/last month etc. Having attended exercise classes where constant improvement in a upward curve was expected and aimed for, a very different mindset is needed in dealing with ME/CFS.
We need to be creative and kind to ourselves. This may sound selfish and those looking on may judge, but it is actually the key to good pacing and generally getting in a better place.
Well done Kirstin! And please, everyone, remember we’re all different. Not everyone will respond as well as Kristin did to these approaches but if it appeals to you, it’s worth trying. Unfortunately, there is no ‘one size fits all’ but we can all learn from each other and glean bits and pieces to try. We each need to become our own expert on ourselves. And never mind what healthy people think or say – I never had a clue till I fell ill!
Here’s a thought, some of you may see red at but it’s where I’m at just now. I recently decided that suffering can serve a good purpose within a community/family – if they are willing to notice and co-operate. Suffering can grow compassion, kindness and patience. I’ve seen this happen around me and within me. It’s a strange compensation and I’d rather be well, but our world needs compassion, kindness and patience!
Good luck Kristin. Good to read a helpful personal story.
Thanks so much, Chris!!!
Thank you for sharing your story Kristin. I phoned Hempworx but they are unable to supply me (at this time) in Canada. What has been your experience with medical cannabis?
Allan,
I also followed up with Hempworx for you and due to Canada regulations we cannot distribute there. Are you speaking about medical marijuana or cbd? They are different. Please clarify. CBD has helped me with muscle and joint pain, inflammation, sleep, immunity, nerve pain, amongst other things.
Dear Kristin,
I’m so happy for you! What a dark valley of fear and pain you traveled – it can be so hard to dig deep time after time to find the strength to endure. This is a common theme for us CFS/ME sufferers, so it is very inspiring to read your story.
You mentioned changing your self-talk – may I ask if there was a particular mantra or set of words you told yourself? Was there particular imagery that worked for you?
Thanks so much for sharing.
Lesley, Thank you and you’re so right it can be tough. I would say things such as “every cell of my being is vibrating with the resonance of perfect health” and declare “i am healed, i am healed, I am healed. Through the power and grace of God, I am healed.” It is important even when you don’t feel healed and if your external circumstances are not supporting your healing goals to keep repeating these things and at a certain point the Universe will deliver what you are expecting. This is where the faith and positive affirmations and feeling in your body as if it has already been done is extremely important.
Good for her. But her case sounds more like burn-out than ME in my opinion.
Laurie, I wish it was just burnout. The struggles have been severe. Not being able to get out of bed for years or even take showers due to the dizziness or weakness. Had an in home nurse to take care of me. Quite typical case of ME in fact.
Nobody said “just burnout”. Burnout can be an extremely debilitating disease very similar to ME. ME starts in the vast majority of cases with an infection in a person who leads a normal life. Cases of gradual deterioration, hectic life, long hours of workout should point to other diagnoses such as diet deficiencies, burnout, over-training, even when the *course* of the illness is “typical ME” (such as repeated infections, orthostatic intolerance, etc.). What is also very distinct is the positive impact for these patients of pacing, a change of diet, supplements, positive thinking. Typical ME is not cured by those. That said, it is just great you have your life back.
Of course not “just burnout!” That thought never crossed my mind! But, I am in partial agreement with Laurie. While Kristin’s accomplishment is magnificent and her story should absolutely be shared here, intractably sick readers like me are left thinking, “but I’m trying all of that—am I doing it wrong, or what?” I have to remind myself, yet again, that it’s not my fault I can’t get well or even stabilize. My disease has simply taken a different trajectory, and it’s likely a different disease with much in common with what Kristin suffers from. We need to remember this when we celebrate others’ success in beating this thing back. Kudos to Kristin—and kudos to ALL of us who are fighting as hard as she does, no matter how it goes.
Hi Kristin,
First and foremost congratulations with your big improvement!
As to Laurie’s and Laura’s comment, I can partially follow their reasoning. It all evolves around:
“but I’m trying all of that—am I doing it wrong, or what?”
That’s the risk of emphasizing or even mentioning the positive thinking / spiritual work / meditation and prayer / CBT angle.
The later has been discredited immensely due to extensive abuse by “the English school of Wesly and White and co”.
The former often leads to well meant advice to “think a bit more positive” or “try a bit harder” and you’ll get there or worse.
That doesn’t mean there is no value in it, but it’s a dual edged sword. If it helps to reach a sort of focused and efficient working mind where there was a very busy mind crushing along all day before then, in combination with other practices like pacing, good food, LDN and others that work for you, these techniques can be truly valuable.
But there also does exist the misconception that all positive emotions are healing. They are not always so!
When I was still better I learned to NOT have much emotions at all. Just being simply happy with a moderate intensity costed so much energy from my body that I got a raging headache within ten minutes! And the limbs followed in pain and weakness.
So please take into mind: all emotions cost energy, even positive ones. All forms of mental focus do cost energy including meditation.
Some patients do achieve having few negative emotions and are worrying far below average without practicing positive thinking or meditation. All it takes is the lack of energy to have these negative emotions or thoughts worth that name. I experienced it. In such cases spending extra energy on practicing positive thinking or meditation may be counterproductive and worsen disease.
A good indicator to identify these patients *may* be that they long term are able to do better on stimulants where patients who benefit more from these spiritual techniques are those that are badly affected by stimulants.
But again, congrats with what you achieved and thanks for sharing your experiences.
As to is it ME or not? To me it’s clear: if you get worse by light exercising then it’s ME, if you get better then it’s likely burn-out. Simple as that, regardless of disease onset. And pacing IS one of the best tools known to ME patients. Some have sufficient health remaining to improve with it (often supported by well chosen other measures that work for that patient). Others only get worse by not pacing in fact proving it’s effectiveness as an ME protocol. Sadly it’s insufficient for most to get better with it on it’s own and getting the wright combination is very hard to achieve.
Having testimonials on what worked for even a single patient may help others to build their own individual protocols based on it, so I welcome every single sharing of such instance. Finding a protocol that works for ones individual case is however a major challenge so to everybody who doesn’t get better: it’s not your fault, it’s just extremely challenging!
Laurie,
I think what frustrates me the most when I go to places to gain support for M.E. is the number of non-medical people who think it’s right to comment on ‘typical’ ME.
I think what’s also awful is that there are so many spectrums of this disorder and people are often (rightly) complaining of not being taken seriously then those within the community turn against others because their manifestation of the disease is different to others.
I wish people would just support each other’s journeys, it is for no other than the medical professionals in each given case to diagnose the diease.
My local ME service has advised that many people have recovered from the worst of the symptoms with suitable lifestyle changes.
Frankly, these comments are harmful and unhelpful to those who are simply looking for answers to their debilitating symptoms.
Some with ME are diagnosed as having a recurring/remitting type with relapses but also periods of wellness.
So to say ‘typical’ ME, I really don’t think there is one.
My story is similar to Kristin’s in a way. In my 20s, I was a hard-charging academic, hoping to earn a Ph.D. and obtain a university teaching position. At 25, my body broke down, but I found no help whatsoever for years. I was told there was nothing wrong with me, only that I was depressed, but I refused to take anti-depressants. I worked as a substitute teacher and a secretary before landing a job as a medical social worker for nearly 4 years. Finally, I was hired to teach at a community college where it was all I could do to handle the demands of the job. Years later, after caring for both elderly parents, taking graduate courses and working at my job, I felt the same fatigue descend on me as before and had to retire. After 33 years, a hormone specialist diagnosed me with an acute EBV infection and told me that meant I had Chronic Fatigue Syndrome. Then I found a functional medicine doctor who really worked hard for a year and a half to get me better. I was told to eat a dairy-free, gluten-free diet with as much whole, organic food as I could afford/find. I was still slepping 10-12 hours at night and waking up tired. At last, he suggested a course of IV glutathione infusions with methylated B vitamins. It turns out I am a severe undermethylator who doesn’t process toxins our of her body or make energy from food. The glutathione detoxed my non-alcoholic fatty liver, and the vitamins gave me energy. That was in 2011. I have gotten an IV every 3 to 4 weeks since and have some semblance of energy and a “real” life where I can be active. I want to report what helped me although I have a friend with a similar condition who has recently started to take LDN and says it is life-changing. Our conditions are varied, and different things help, but good diet, exercise, mental and spiritual attitude are foundational.
Kathleen, thanks for your comment. This resonates strongly w/my situation.what specialty is a functional medicine doctor? Where can one get that type of IV- prescription needed? What type of practice administers the IV. Thank you.
I’m pleased that someone is feeling better after feeling so grim. However, I do have great issues with the suggestion that having better thoughts is any kind of cure, unless the original problem was mostly stress-related. I have worked extensively on my stress, habitual thinking, life plans, everything. I am less stressed but not more well. I cope better with my illness-created limitations but I am not more well. Being positive has not made me more well. My illness is not an emotional one. Happy thoughts won’t fix it.
I think lots of people are in your situation LondonPots. They have worked a lot on reducing stress and it has helped (or not) but nearly not made them well. (Thinking happy thoughts I don’t think helps anyone by the way….:)) I would note, too, that CBD oil and LDN played key roles in helping Kristin as well
I also think that minor helps are still helps and whatever can relieve the burden is a step forward, even if its a minor step forward.
I don’t think we should assume that because one thing helps someone it’s going to help someone else. So many people are helped by so many different things. We should just have room for whatever helps anyone.
I agree. As I said above, I find journalling, meditation etc helpful. I’m not cured. I just need to be able to live more peacefully with the condition. One day I may be well. I go through phases when I can repeat positive affirmations regularly, and phases when I can’t – I’m just too brain dead to organise my thoughts.
Dejurgen is correct to my experience, all emotions use energy and positive mental work is still work. I find I have to be especially careful not to get too upbeat – in (still rare) social situations or watching TV. I can get a rush of whatever it is you get when you’re happy/laughing/excited and then think I have more energy. I don’t. It wasn’t energy, it just felt like it. I can then do too much and crash. Now I let myself calm down before doing anything on the back of a ‘happiness rush’ as I call it. Then I can be sure it’s real energy I’m using. Usually I need to rest after a happiness rush – it’s actually exhausting!
But getting into a peaceful place, when I’m able, is helpful. No extreme emotions to drain me. I have to be careful that I don’t strive to be peaceful – that defeats the object! And not to be critical of myself when I can’t be at peace. That also defeats the object!
These things are all just tools that may help some, in which case, it’s worth sharing them.
Rose, Yes, self-compassion is HUGE when it comes to this illness. Remember that if you see yourself to be stuck, perceive it differently. This is merely our time to see the best perceived route and to take pause. Healing is a process and we grow and learn from it. Support is absolutely necessary and there is no “one size fits all” approach which is for sure. Love and awareness and self-compassion are so key though! Not saying positive emotions can completely heal, but they do way more than negative emotions; in fact negative emotions hold us in a state of fear and anxiety which stunts our healing.
Congrats, Krisin. I’m a 30 year vet of CFS/ME. To everyone considering CBD, be careful with it. It’s an immune modulator and that ‘modulation’ may or may not line up well with your specific immune idiosyncrasies and irregularities. My first month on low dose CBD was wonderful. The second month pretty good. The third month I ignored a troubling, familiar return of long since overcome ‘neuro-muscular’ symptoms. By the fourth month I had a MAJOR, scary relapse. Still recovering from that. CBD is not a good option for me. So, as I say, be discerning, go low and slow.
I am so pleased for you that you are more well, I really am. And I do think that we in the community of ME should celebrate success wether you agree with the process or not!
No one has the right to tell another that they don’t have ME imho. Their written story is a snapshot of their journey and all information may not be in there.
So I plead with people with ME to not jump to conclusions and to refrain from being too critical of some one else’s journey.
I personally feel as though I’ve tried most things, but I continue to deteriorate.
I’m a spiritual person and I do find my Christian faith to be helpful for my soul, but sadly it is not healing me.
I think if we can get in a good place mentally, it helps us cope better with this illness. Now if that helps towards healing for some then that’s fantastic surely?
If Dr Klimas is correct in her theory, then maybe the stress response can be reversed!
Cort stated “Dr. Klimas has said ME/CFS/FM is a stress response disease – not in the sense that stress causes it but that the stress response systems – the autonomic nervous system, HPA axis and immune systems – are at the core of it.”
In all the reading I’ve done I do believe this may be true as it would then explain all the neurological problems associated with ME, including mitochondrial dysfunction.
Kristin has not stated she is completely cured, but that she can tolerate light exercise and has regained most of her health.
I’ve tried the programs like Gupta and ANS rewired, but haven’t completed them for various reasons and maybe if I had I’d be writing a success story, who knows?
Kristin seems a very persistent young lady whom does follow through, and that has never been one of my strengths unfortunately.
All I know is, for me, I lose energy quickly when I exert myself. If I exert too much, I quickly lose my ability to walk and speak. These weren’t my symptoms 9 years ago when it all started after an infection following a tooth extraction then topped with flu, laryngitis and glandular fever, and oh, no rest ?. I collapsed then, and again 6 months later due to not resting. By this time I did see a dr who diagnosed me with exhaustion. But I had my own business which kept me very driven. Events called me to leave and due to my husbands job we moved countries in summer 2010. I thought by the end of the first year, I’d have rested and be ok. But I continued to exercise. In fact I thought it was a fantastic opportunity to really get back into my running and so I was frequently running 10 miles at one time. I caught another case of flu of which I didn’t rest from and by summer 2012 I realised I actually couldn’t exercise without crashing every time. It was obviously PEM, but I didn’t know that then. Over the years since returning to the UK in summer 2013, I have gradually, and then suddenly declined leaving me wheelchair bound and now bed and house bound.
I can recognise the events that have probably pushed me into a crash then full relapse, and then into a new baseline. As yet, I’ve never managed to get back into the previous baseline. I’m currently having a home physio to help advise me on pacing primarily. And as others have stated, this is likely the most important action to refrain from deteriorating into further stages of ill health. My action from the physio last time I saw her was to go out in my chair with my hubby operating the controls, with the theory I could sit back and relax?, IF I was experiencing a good day, and for only 10 minutes. Now when I first get up I am most likely to feel fairly ok after some breakfast. So, the weekend I went for it, but instead of sticking to the instructions, I went out for 30 minutes because there was a certain spot I wanted to go to and see. And as for the controls, well it wasn’t long before I took over! By the time I got back, I couldn hardly walk or talk. I further relapsed in the afternoon following a phone call, which intensified my lack of speech and I needed help to the bathroom, with undressing and with eating, all because of 30 minutes out in a chair!
I’m not sure how or why I just relayed all that, but for one thing, we are all different. And what works for one may not work for another, but it may be worth a try.
In the scientific arena there are a few hypothesis flying around as to the cause, but the fact is, there is no proven cause as yet, which means there is no proven cure.
So, until then, we as patients will continue to try different things until we are to tired or too ill to try anymore.
I’m now classed as having severe ME by my GP. I don’t have hope that I will get better, but I’d be extremely pleased if I did! The physio thing, is my new effort at aiming to get better, but after the weekend I think for me, being in a place of acceptance and peace works best for my mentality. BTW, I’m trying this new approach for my husband & GP as they are both desperate for me to get well. Maybe pacing in such a way will eventually work IF I listen to the instructions, who knows?
I feel sad that I cannot be like Kirsten, determined to follow through despite the drawbacks that occur. But I’m not like her, I am me!
And if that means I have to stay in the house or bed for the rest of my life then so be it. But I do have a gorgeous spring and summer garden courtesy of my husbands hard work!
So, I read articles like this and I’ve trained myself to think, bravo and congratulations to her! It’s not my place to make a judgement on her symptoms or her health journey. But it is my place to congratulate a persons return to a healthier body, as I would expect my ME community to do the same for me if it were my turn.
So, Kirsten, you had ME and you are now so much better due to the course of actions you decided to implement. I’m so pleased for you! And I hope your story will inspire someone to try some of your actions to see if it works for them. For me, I’m going to try CBD oil. I’ve been meaning to do it, and your story has finally given me the push, so thank you!
Much love,
Fiona. xxxx
Fiona – It sounds like you are a true warrior, whether you believe you are or not. You’ve prevailed and while you say you haven’t been as persistent, it’s not always the persistence aspect that prevails. As we all know, it’s listening to our bodies and doing what’s right for them. Thank you for supporting me and I wish you the best success. Don’t give us. I never thought it possible to get where I am today given how extremely sick I was and if it’s possible for one person it absolutely is for others. Just remember, you can’t get well in the same environment in which you got sick, so rest is key!
Dear Kristin, did you really have ME, according to the strict ICC criteria?
Have your laboratory findings also pointed to ME?
Cheers, xcell
xcell – I do. Diagnosed by the Mayo Clinic and other prominent medical facilities.
That’s incredible to hear. I’ve also been battling going back and forth. It’s funny how we all take the same path.
Out of curiosity, did you fly a lot back then? I am a commercial pilot (although I had to stop recently because of the symptoms but still trying to get back) and I also started with multiple infections, a pneumonia and finally an active EBV. I wonder if the Aerotoxic Syndorme as something to do with it because of chronic Organophosphates inhalation. So, could you relate the multiple airplane travels (as you mentioned, you traveled a lot) with the symptoms?
Best Regards
Tomas – I did. I traveled on a weekly basis and for awhile there internationally for work. Definitely highly contributed to the illness I’m sure. Sorry to hear that you’re dealing with this as well, but glad you’re listening to your body. You will return when the time is right!
“could you relate the multiple airplane travels”
Some patients and research claim hyperbaric (oxygen) therapy helps them a lot. That’s living a few hours every now and then at increased air pressure (with same air content or with more oxygen).
Flying is reversed. While carbines are pressurized, I think they are at lower pressure then sea level (could you confirm or deny, Tomas?).
Many hours a week at reduced pressure may make ME worse if a few hours of increased pressure could improve it. Flying (sitting long times with few leg movements) is also known to stall blood flow in the legs and impact blood flow body wide. Poor blood flow is often associated with ME.
I am glad to read of your new life. I have a question about the CBD. you mention you are up to 20 drops and or started with 4 drops 2x a day. Do you know about what that dosage would be? i guess it would be per drop? I looked at the web link you provided but couldn’t figure out the dose. curious since I have some CBD already that I would like to try.
thank you so very much!
Cbbrooks – The Hempworx 500mg is 10mg per dropper which is roughly 20 drops, so that would equate to approximately 2mg per drop. The Hempworx 750mg is 15mg per dropper which would equate to approx. 1.3mg per drop. Hope that helps.
thank you Kristin ! Do you remember if it made you sleepy when you first started?
i was taking about 10mg worth of the oil I have and I was so groggy..I backed it down to 2mg and seems much better so far.
congratulations on connecting with yourself and making the changes you needing and finding recovery!
Yes! I was so tired I almost gave up on it. Then I was told to keep going and after a couple days my body adjusted. This is why it’s important to start low and increase slowly.
If there is 10 mg/20 drops, then 1 drop has 0.5 mg, not 2.
My 16 year old daughter, Jane, was diagnosed of herpes. ever since then,we have been going from one hospital to the other. she have also tried all sorts of pills but all efforts to get rid of the virus was not successful.i started combing the web to sought for any other means of saving my daughter.just then,i came across a comment on Dr Voke herbal treatment and decided to give it a try.he prepared the herbs and sent it to us.my daughter used it as directed and not up to two weeks,my daughter regained her health..don’t let doubt and ignorance not let you get the cure you need,contact him on his email ; doctorvoke@gmail. com
This is so wonderful, Michael. Really happy for you and your daughter!!
Your story is incredibly relatable! There were parts that felt as though I could have written them myself. Part of my struggle is that I got ME/CFS at age 14 after a bad series of strep throat infections. It was already such an unsure time in my life, I was going through puberty, coming to terms with my sexuality (realizing I identify as queer), and battling sudden depression/anxiety and undiagnosed ADHD.
I knew something else was very wrong but I was rarely believed by doctors/family; or they blamed it on depression. It’s stupid, but as a man, I grew up being told that I needed to always be strong and not admit to weakness or pain. Entering my 20’s I had given up on finding an answer and blamed myself; I worked myself into the ground repeatedly in an attempt to ‘achieve enough’ and keep up. Finally, a few months before my 26th birthday I fell apart completely and moved home with my mom.
After that I finally got diagnosed, mostly through my own research and asking doctors for specific tests. It took 11 years just to get to that point. I spent so much of my life needlessly suffering. It’s only been 4 months since then, but I have also learned that taking a multifaceted approach is the only way to heal. I’ve started to build a spiritual connection and to meditate and be more mindful, to have faith in myself and the universe, to love myself and listen to my body instead of ignoring it.
I’ve been on supplements/meds as well and trying to keep my physical health up with whatever exercise feels okay that day. It’s hard, but your story inspires me! I’m excited about my future for the first time in my life, instead of just being afraid of the unknown.
Thank you for your story and I hope your health journey continues to bring you upwards. Sending love and wishing you the best 🙂
Javin – So glad to hear that you are taking a holistic approach to healing!! Keep going and remember to continue to honor your body, mind and spirit. As I mentioned in my story, the key to guidance from the Universe started with chakra meditation. Remember to cleanse your energy and if you are open to it, the Universe & God will lead you in the right direction. It could take some time but you will continue to see the nudgings by the Universe. Keep up the faith and healing will come!!