ME: myalgic encephalomyelitis
CFS: chronic fatigue syndrome
FND: functional neurological disorder
There are many ways I could write about my experience of ME/CFS, FND and recovering. I could tell a story of an inadequate healthcare system and ignorant and ineffective doctors, I could tell a story of massive quality of life impacts, or I could tell a story about emotional trauma. But I want to focus on symptoms, strategies and healing. I want to share my story in a way that might offer something to others suffering with they same symptoms as I did.
I believe I have fully recovered from FND. I believe I have almost completely recovered from ME/CFS. Now I am functioning and feeling well and am just working through reconditioning my body and rebuilding health, flexibility, and fitness. I have no chronic pain, I no longer suffer migraines, I feel energy in my body again, and I can complete multiple tasks easily.
There is a lot I don’t know about why I had the symptoms I did and why I recovered but I can make some guesses and offer possibilities. There is a lot not understood about ME/CFS and I won’t pretend to know things I don’t. I’m largely in the dark, but I’ve learned to be OK with that, and I’ve embraced not-knowing as a space for good possibility. I can’t pinpoint exactly which strategies were the most effective as I applied multiple approaches in parallel. What worked for me might not work for others, but my strategies were low-risk, evidence-based, and offer multiple potential benefits. What makes sense for me might not for you, but you are completely free to disregard or disagree with anything I state. We each need to find what is right for us and what works for us and our own situation. I haven’t been fully specific about things like supplement dosage or the particulars of pacing because I suggest you find that information independently from a qualified source. I’ll provide a few links but I don’t know if they represent the best information available. I also know that reading stories of recovery can be upsetting and difficult for those in the midst of illness, if this is the case then read lightly or not at all. Take what helps, leave what doesn’t.
I have written assuming the reader has familiarity with ME/CFS and concepts like pacing, mitochondrial dysfunction, inflammation, and CCI/AAI. I have included more detail about FND because I think it is badly understood and often poorly represented, particularly within chronic illness community.
If you are in the midst of chronic illness I want you to know — you matter, your pain and suffering matters, you deserve support, you deserve hope and you deserve healing. People may let you down, you may not know why you are going through what you are going through, but you are strong and you are worth fighting for.
‘If only I could show you, when you are lonely and in darkness, the astonishing light of your own being’ — Hafez
Overview
Chronic fatigue and pain: managed and recovered with pacing, supplements, nutrition, and withdrawing medications.
Migraines: eliminated by physiotherapy of neck and jaw.
Physical therapy: every little thing counts.
Functional neurological disorder: specialist rehabilitation.
Coping: counselling and perspective.
Medications: potentially problematic.
Summary of my case
I developed ME/CFS after an unspecified viral infection with GI symptoms that led to a UTI and pretty serious kidney infection. I was unwell while on a family holiday and I didn’t rest adequately, I tried to push through, and there was a lot of stress in the situation. When we got home again I rested and waited to recover but it didn’t happen. I felt chronically unwell with symptoms that will be familiar to those who have experienced ME/CFS. I had extreme fatigue and weakness, fully body pain, and felt feverish and sick.
After months of these symptoms and also experiencing worsening migraines (something I’d been struggling with for the past few years) I was referred to an internal medicine doctor, a variety of specialists and went through a raft of diagnostic tests. I never felt my ME/CFS diagnosis was very conclusive, it was presented as a fall-back diagnosis and it didn’t lead to any referral or health support or services. I was just left to deal with it. (I live in a country with free healthcare. Most illnesses are provided clinical services and support. But like many countries there is no pathway for patients with ME/CFS.)
I struggled for quite some time and had some setbacks, but after coming off some problematic medication, taking supplements, enhancing nutrition, practicing pacing, and getting physiotherapy on my neck I stopped having chronic pain, stopped having migraines and gained a little energy. As my ME/CFS symptoms were improving I unfortunately additionally developed FND.
FND started with some vague symptoms like numbness in the left side of my face, weakness in my left arm and leg, clumsiness, and double vision, but then escalated to periods of being unable to speak, left side numbness, and even an episode of being unable to walk. After a couple of trips to A&E and another appointment with a neurologist I was diagnosed and referred for rehabilitation. My FND symptoms self-resolved quite quickly so I only needed a little rehabilitation to reinforce my recovery.
Medically unexplained symptoms and labels
The way I understand myself is as having had ME/CFS and then on top of that FND. I wasn’t ever given the labels of fibromyalgia or irritable bowel syndrome but I possibly could have. Fatigue was my dominant symptom so ME/CFS was the label I got. (FND was a definitive diagnosis based on positive signs, it was not a diagnosis of exclusion). I know that ME and CFS are not necessarily the same thing (and that chronic fatigue syndrome is different to simple chronic fatigue). There is ongoing debate about this terminology and understandably so because it is hard to give categorical terms to things that are poorly understood. I think there is some benefit with us all being under the same umbrella — our experiences are similar and we can support and advocate for each other. I met ICC criteria for ME so when writing about myself I use the label ME/CFS.
I think it is important we remember that labels for medically unexplained symptoms are just labels, they are not diagnoses. As much as we may want the certainty of diagnosis, it unfortunately is not sometimes available in the current medical framework and knowledge. Our symptoms and experiences are very real, the fact that something is going wrong is very real, but at the same time there is only so much explanation we can derive from labels like CFS or fibromyalgia. Having a symptom that is medically unexplained doesn’t mean it is and always will be unexplainable and any medical professional who adopts this attitude is frankly foolish. We should also remember that even people with clear diagnosis of well understood illness don’t know everything that is happening in their body either and are also subject to a range of possible outcomes.
Getting normal test results can be frustrating but we should remember to be happy with these results. Any time we learn that any part of our body is functioning well is a reason for hope. I suspect not every patient sharing the label of CFS or the label of fibromyalgia necessarily has the exact same processes going on in their bodies and we should be mindful of that when we share and compare our experiences with each other. I think a lot of different things were going wrong for me and many of them fed back in on themselves and each other forming a tangled knot of illness that I had to carefully unravel.
Fatigue
For me fatigue felt like there was lead running through my veins, like I was moving through water or an even denser liquid. Small physical movements and tasks would feel like I’d run a marathon, my muscles felt weak and shaky and completely lacking energy and small tasks would cause significant muscle pain. I would have to pause to rest when dressing, bathing was challenging, and I struggled to simply sit up-right in a chair. I only had about two hours of upright activity per day. (For healthy people this measure is 14–17 hours per day.) I struggled to think clearly, to comprehend new information, to remember things, and to find the words I wanted to say. I reacted badly to exertion of any kind (physical, mental, or emotional) and would feel very unwell for days afterwards with an elevated heart-rate.
Mitochondrial function
There is some evidence that this profound fatigue is due to mitochondrial dysfunction and that those with ME/CFS have a limited aerobic energy system. The descriptions of what that means for functioning and symptoms felt highly consistent with what I experienced.
I learned about pacing and worked on listening to my body and operating within my energy limits. This takes stress off the body and allows some space for recovery. It is absolutely critical.
I took a variety of supplements to support mitochondrial function including D-Ribose, coenzyme q10, niacinamide, pyrroloquinoline quinone (PQQ), alpha lipoic acid, benfotiamine, and acetyl-l-carnitine. I also took a general multivitamin, omega 3, 6, and 9 in the form of flaxseed oil and filled my diet with a variety of antioxidant-rich foods. I try to make every meal and snack highly nutritious. My normal diet was very good, but I made sure it was really packed with a wide variety and quantity of fruit and vegetables. Fruits and vegetables and herbs and spices are abundant with things that promote our health — vitamins, minerals, antioxidants, fiber, anti-inflammatory agents — they are medicine. I already didn’t smoke or drink and I also stopped all caffeine. I no longer take most of the supplements listed above, but I still take coenzyme Q10, flaxseed oil, and magnesium and calcium (discussed below under pain).
Sleep
I was referred to a sleep clinic and diagnosed with sleep apnea and started CPAP (continuous positive airway pressure) therapy. This did not make a dramatic difference to my fatigue but it did reduce my day-time sleepiness and I no longer felt compelled to nap during the day, naps during which I had also not been breathing adequately. For a long time I struggled to get to sleep, mostly due to pain, particularly in my neck. I developed a habit of getting to sleep late and sleeping late into the morning. As I started to have less pain and was able to sleep more easily I gradually worked my waking time back to a more normal time. I’ve felt a lot better being back aligned with my normal circadian rhythm and can now wake up normally, not relying on a series of alarms to drag me out of sleep.
Disability
I wish that I had been more willing to use disability aids, particularly a wheelchair and parking spaces, so that I could have engaged more with the world rather than just staying at home most of the time. Some people in my life discouraged me from using a wheelchair as they believed, with good intention, it would only feed into my feeling of being disabled. However, being stuck at home and not going out was already doing that. I would encourage others in similar situations to be willing to adapt and use whatever strategies and aids necessary to enhance quality of life and allow you to go to places and do the things that are meaningful to you.
Fatigue as a functional neurological symptom?
I believe my fatigue very definitely started as a result of a post-infection process and I believe it was very much physiological. However, there is a possibility that at some point it was no longer just a physiological process but also partially a functional neurological symptom. When I was diagnosed with FND I didn’t instantly fully accept the diagnosis, but I worked to remain open-minded and I chose to consider the possibility that fatigue might be a functional neurological symptom. It really was right at this time, as I was considering and being open-minded about this, that the fatigue dissipated. It could be a coincidence — I was recovering from ME/CFS and FND in parallel — but I strongly suspect there was a functional neurological aspect to at least some part of the fatigue. I know that the idea of functional neurological symptoms is challenging to accept, I found it difficult, it really is such a bizarre thing to experience. I will write more extensively about FND below. The specialists I worked with for FND were very committed to treatment based on evidence and didn’t feel they could definitively claim that fatigue was a functional symptom but I think it certainly seemed like there was that possibility for me.
Environmental factors
I know that some people with ME/CFS attribute some of their illness to environmental factors. For those who have had significant exposure events this is very plausible and for some people some of their symptoms may be from chemical sensitivities. I did initially fret a little about mould and dust, but in reality my home is normal and healthy and I don’t live in a place with significant pollution. I already had low chemical use in household and personal care. I have no evidence to suggest that there are environmental factors at play in my case and believing so would mostly be based in imagination. For my personal situation I think that fixating on this would only be problematic and cause undue anxiety and nocebo effects. Our bodies can tolerate a little environmental stress, they are capable of doing so without major health impacts. I actively and consciously choose to recognise my home and environment as supporting my health.
Chronic pain
I experienced chronic pain in every part of my body. After many months of enduring chronic pain I was prescribed a daily non-steroidal anti-inflammatory drug (NSAID). This did somewhat reduce my pain, but after several weeks I developed overuse symptoms and became much more unwell. I had a chronic and severe headache, gastrointestinal symptoms, loss of appetite, pulsatile tinnitus, and aversion to light, sound, and smell. It was a significant health setback. In the fog of pain I also accidentally overused rizatriptan, a migraine medication. Once I realised that my symptoms were overuse symptoms I chose to cut all pain medication immediately. I had a very rough couple of days mostly spent alone in a dark room with a compression bandage over my eyes and white noise trying to sleep as much as I could.
It took months to recover from this incident, especially to recover from the gastric symptoms. I have rarely taken pain medication since. (At the same time as I developed NSAID overuse symptoms I was also experiencing venlafaxine withdrawal. More about this in the postscript about medications.) I was prescribed omeprazole for gastritis but it made me feel nauseous and awful and made my heart race. I used some slippery elm and probiotic yoghurts to soothe the gut and I ate very little for several weeks.
Months after this I noticed I no longer had widespread pain. I don’t exactly know what this is attributable to. I suspect when I developed ME/CFS there was an inflammatory aspect and that while I was pacing and using careful nutrition and supplements to reduce my fatigue it was also reducing inflammation and lactic acid build-up. Pain is a complex phenomenon. It can be an important signal indicating damage in the body. It can also be a signal that gets stuck on long after the damage has healed. Our nervous system is responsive but it sometimes gets things wrong, particularly when we are in the midst of complex dysfunction. Maybe my pain dissipated after I managed to calm my whole nervous system down. It may be that taking an NSAID for a period of time did help reduce long-term pain, even with all the fall-out that entailed, but I would not have taken it if I had known what the effects would be. (I will also note NSAIDs are among the list of medications to avoid for those who have mitochondrial disorders and given that ME/CFS may involve mitochondrial dysfunction I have to wonder if these medications are not appropriate for ME/CFS patients).
I take magnesium daily and found it effective in reducing muscle pain at all stages of my illness. I also take a calcium supplement to reduce menstrual symptoms (including pain) and find it somewhat effective. I regularly have probiotic yoghurts to support gut health.
Currently I only deal with incidental pain, which is understandable as I now have a body that hasn’t been moving or functioning well for some time. I am working through aches and pains as my muscles learn to work again and I stretch and realign. I’ve been continuing to avoid pain medication but I do drink a lot of herbal teas targeted towards reducing inflammation, including a lot of my own blends fresh from the garden. I frequently include rosemary as it is a demonstrated effective anti-inflammatory and anti-oxidant but there are many other herbs and spices which are also beneficial and I include many in teas and in cooking.
Migraines and the neck
When I developed ME/CFS I had already been suffering from regular and severe migraines for a number of years that had been significantly interfering with my life.
Those in the ME/CFS community will be aware that there are stories of recovery following discovery and treatment of CCI/AAI. Reading those stories and their descriptions of their symptoms led me to take a look at my neck and visit a physiotherapist. I had full spine and neck x-rays and while I have some minor issues, I do not have significant joint instability. However, I did discover I had a very poorly aligned spine with mild scoliosis and my neck alignment and muscles were in a bad shape. I came to realise the years of horrendous headaches I’d experienced were largely due to pain and tension in the muscles of my neck and jaw. My neck was initially very poorly aligned and I had to do a lot of careful physical therapy just to get it to a stage at which I could even wear a soft neck brace. I didn’t wear this brace long-term, but for just a few months to protect the neck as I worked to lengthen and strengthen it. I have a skilled physiotherapist who works carefully with me. Now that I’m not suffering with fatigue and weakness I am able to do some self-massage.
The improvement in my neck alignment is so significant I can’t rule out the possibility that there was some nerve compression or cervical stenosis causing spinal cord compression or interfering with cerebrospinal fluid flow. By the time I had x-rays taken, and more recently an MRI, I had already had a lot of treatment and improvement. What I do know is that getting treatment for my neck and slowly stretching and strengthening the muscles made a dramatic difference to how I felt and I haven’t had a migraine/headache for a long time. As the condition of the muscles of my head and neck improved, my pulsatile tinnitus has faded. Pulsatile tinnitus has been studied in relation to tension in the muscles of the head and neck. The problems with my neck muscles may have been feeding into other symptoms like dizziness, blurred vision, inflammation, and sleep apnea.
Physical therapy
My initial physical exercise was extremely limited. At my most unwell all I did was small and gentle stretching, engagement of core muscles, and some breathing techniques like pursed-lip breathing and humming while exhaling. It is not much, but it is what I could do and, as limited, subtle and small as it was, it helped. Any little thing you can do that makes you feel better, that supports your health and well-being, that lifts you up and moves you forward, even if it is minuscule, is worth doing. Tiny steps in the right direction are significant. I now do more stretching and strength work. I progressed from what I could do in a lying position, to doing some things in a kneeling or seated position. Now I can do some stretching and balance in a standing position too. I feel that the limitations of ME/CFS are gone but I still have a long way to go to come back from deconditioning and I have a lot of tight muscles. It is not easy but I am committed to each step and every little bit of progress is very fulfilling.
I am aware that inflammatory processes can be degrading to connective tissues so I include varied protein in my diet and while I was working intensively on my neck took some collagen supplements also. I don’t know if they had any significant effect though.
Before I developed ME/CFS I could happily work in the garden from dawn until dusk. Gardening was important to me, part of my identity, and had been a large aspect of recovering from previous mental illness. When I initially approached gardening while sick it didn’t go well, it was painful and distressing and I just gave up for a long time. When I was ready to try again I started with tiny tasks. Now that I am recovering I can work for hours and I’ve even done things like pushing a wheelbarrow full of compost up a steep hill. It was hard but I did it, something that would have been impossible not so long ago.
Functional Neurological Disorder
What functional neurological disorder is, and what it is not
It is a deep subconscious brain disorientation that produces very real and debilitating symptoms. It is not something that patients have choice or control over or can recover from through just effort or concentration. It is not imaginary or “just in your head” or a result of stress or emotion. It requires targeted and specialist rehabilitation to retrain the brain and movement. It can happen completely out of the blue, but it’s also common to happen to people who already have health challenges and symptoms, where the brain is struggling to make sense of things, but gets stuck in bad patterns. It can be understood to operate somewhat like the nocebo effect, when the brain has a certain expectation of physical or physiological symptoms and then produces real reactions. Then, on experiencing these symptoms, there is a feedback loop that reinforces and exacerbates symptoms. Sometimes it happens to people who have witnessed illness in others like family members.
The origins of (mis)understanding of FND are very Freudian and it was once erroneously explained as a form of mental illness or a dissociative process. Despite understanding having moved on from these ideas 15 years ago, it is still sometimes discussed under these frameworks or equated with “conversion disorder” arising from some suppressed traumatic memory. This is stigmatising and alienating, not how the disorder is understood or treated by specialists and just doesn’t make sense or have any reflection in reality or supporting data. It is simply not what FND is.
I find that non-specialist doctors either have no idea at all what it is or hold some of the old-fashioned ideas that it is something to do with stress or mental illness. There are books about it called stupid things like “It’s All in Your Head” and describing it as “imaginary illness” which are just not a realistic or compassionate or helpful representation of what the disorder is. This does not represent at all how the illness is approached or understood by specialists with up-to-date and evidence-based understanding.
There is a lot of this bad and out-dated information that circulates about FND and I think, sadly, it is stopping some patients from seeking help and accepting diagnosis. From described symptoms I wonder if there are many people with chronic illness who are also experiencing FND. Unfortunately there have been people with chronic conditions who have been very wrongly told that all their symptoms are due to FND which doesn’t help and has given FND a bad reputation in the chronic illness community. In my case my understanding is that I had ME/CFS and then had FND as an overlay on top of existing illness. That explanation is agreed on and supported by all the health professionals I have worked with. I am grateful that my diagnosis of FND was never used to minimise or invalidate my experience of ME/CFS.
My FND experience
For me FND came on top of existing physical symptoms. It’s hard to pinpoint exactly when it started but I know around the time I was feeling awful with overuse symptoms from painkillers I experienced noticeable worsening of cognitive impairment. At some point I developed quite sudden blurred and tunneling vision, worsening dizziness/vertigo, bowel and bladder dysfunction, I lost strength and feeling in my left side, and would be unable to speak at times. When I couldn’t speak it was stuttering speech, or I could get out a few single words, or only slowly pronounce words a syllable at a time. There were a few severe episodes when I could barely move or be unable to walk and I had two trips to A&E. On the first A&E visit I’d had pins and needles and then lost feeling down the left side of my body and the left side of my face was droopy and they were concerned I was having a stroke or TIA, but it wasn’t that thankfully. (There are many other ways FND symptoms can present, including spasms, twitching, tremors, and seizures).
My vision was significantly impaired for quite a few months so I couldn’t drive and relied on family driving me to medical appointments. At times I used a wheelchair or crutches. My symptoms were mostly transient. Recovery is normally much more of an ongoing process and sometimes with only partial recovery. I was a rare and fortunate case of almost spontaneous recovery of symptoms.
The small amount of rehabilitation I did was working at a specialist centre with a psychologist and physiotherapist who were very knowledgeable and engaged. We worked on me understanding my symptoms, supporting the recovery, and learning strategies to prevent relapse. We tried to see if certain activities could trigger symptoms so we actively recreated scenarios that I thought may have been trigger in the past like experiencing clumsiness or dizziness. If my symptoms had been triggered they would have been immediately treated and resolved so it was a safe scenario, but I was still given full choice and control. I was pretty determined not to have symptoms triggered and they were not. Additionally, the challenges really helped me see how good my functioning was and I assume reinforced my subconscious beliefs about being well and able. An important aspect of relapse prevention is to not overreact if symptoms happen again, to just see them as a nuisance, to challenge them and to move on. It is detrimental to our health and functioning to focus on symptoms and ruminate on them. Many of my FND symptoms had some basis in underlying physical illness. I had some nerve compression in my left shoulder and while normal symptoms of this would be quite mild, FND amplified them. In the midst of my worst illness I had been actively trying not to over-focus on my illness and not to have unproductive thoughts about my situation but now I can see that I was ruminating to some extent. However, this is understandable and I don’t blame myself.
Accepting the diagnosis
Functional Neurological Disorder (FND) can be a difficult diagnosis to accept and I know for some patients they don’t accept it. I found it a challenge and I had my reservations, in large part because I’d been exposed to a lot of poor information and badly informed opinions about FND. I took the position of remaining open-minded. I was being offered help so I wanted to take any part which might help me in any small way. The fact that I’d had a brain MRI while going through ME/CFS diagnosis, had seen the images for myself, and knew definitively my brain was healthy and intact helped. My most dramatic symptoms were transient so I knew something strange was happening.
Because of my open and factual advocacy for myself, the health professionals I worked with were willing to consider other factors and do some investigating even if it was just to confirm there were not physical causes of symptoms. To some extent they were willing to do this just to help put my mind at rest (and my family’s minds at rest). I was concerned because of my symptoms and especially the loud pulsatile tinnitus that there may be a vascular issue in my head or neck so was given an MRI to check. I now suspect given this symptom has faded with treatment of the muscles that it was from muscle tension in the neck and/or jaw. I also found that as I recovered from FND my double vision improved dramatically but not 100%. If I look through a pin-hole my vision was near perfect which suggests a refractive (physical) issue as does the fact I had double vision in each eye individually. My team discussed and supported me seeing an ophthalmologist which I’m going to do. Either there will be a physical issue with my eyes and we’ll tackle it or they’ll tell me my eyes are fine, my brain will get that message, and that should help my FND recovery.
FND triggers
There is a key element of FND which involves the subconscious really believing in the existence of illness and dysfunction in the brain and body. I don’t know exactly where my subconscious got its bad ideas from. In large part it was amplification of real symptoms and illness, it could also have been from concerns and theories expressed by people around me, it could have been from interactions with doctors, it could have been from searching and reading health information, it could have been from reading about other people’s symptoms. I think there was information that I processed consciously believing I was not personalising it or taking it on-board, yet my subconscious did so without me knowing or permitting it. I don’t regret the research I did to try and understand my symptoms and find solutions. In the end I did find a path to recovery, but it’s unfortunate it may have triggered symptoms at the same time. In a better healthcare system I would not have had to go searching for solutions on my own.
With what I have experienced and know it now concerns me that in the chronic illness community, in the commendable goal of advocacy and support of patients, that there is a risk those same patients are also being unintentionally harmed by being exposed to a continuous stream of described symptoms and a negative and despairing depiction of illness. I think as we share our experiences we have to keep our audience in mind. What is helpful to share for awareness and advocacy and with the goal of systemic change is not always the same as what is helpful to share with those we wish to support who are suffering illness and are vulnerable.
While there are benefits from online social support and connecting with others who share our experience, there are also potential negative outcomes. I try to be mindful of how and who I engage with and the impacts it is having for me and only participate in what gives me benefit. We should avoid anything that feeds into negative perceptions as the effects can be not just on our emotional health or attitude, but truly manifest in our physical health too.
Coping
When we face major health challenges it is important we work to use deliberate and proactive coping mechanisms rather than maladaptive non-coping mechanisms and to practice acceptance with a solid understanding of what acceptance means. ME/CFS is incredibly hard to face. It is a massive challenge to deal with the pain, frustration, and grief that comes with it.
I think initially when I became unwell I reflexively adopted a depressive and disassociated approach to what I was experiencing, understandably so. After some time, and the failure to get any understanding or guidance from the medical community, I realised it was up to me to manage my situation. I knew that I personally could not just go to bed and surrender and that if there was any way I could feel even a little better I was fiercely determined to find it. My goal was not recovery, but just improvement, and to give my body every opportunity to heal. I held the ME/CFS label at arm’s length and always reminded myself there were many things I didn’t know and in the space of what I didn’t know there was an opportunity for healing. I deliberately shifted my thinking from believing my body was broken and dysfunctional to seeing my body as striving to heal and recover, even if it wasn’t quite getting it right, and to observer all the ways in which my body was functioning. I moved my focus from ruminating over every little symptom to reminding myself of the enormous capacity of the body to heal. I realised I was hurting myself by comparing my circumstances to my earlier life when I was young and healthy. It didn’t help and I don’t do it at all any more. I firmly focus on where I am right now and the next small step forward.
I saw a counsellor as I knew that I wanted to frame and process my situation in a better way. I found it very helpful and my counsellor really encouraged me to shift to a proactive and problem-solving approach and see the importance of every small step I could take to support myself. He was very good at validating and recognising my experience, frustration, and grief while at the same time helping me to accept the limits to what I could know and what I could control. He also helped me be a better advocate for myself in interacting with health professionals and find the balance of speaking strongly for myself and be challenging with confidence I wasn’t being aggressive or defensive, just simply committed to having facts and reality on the table.
I funneled my grief, frustration and rage into a furnace of determination. I visualised a column of light through the centre of my body and if all I was capable of doing was breathing and enduring pain then I would breathe and feed that column of energy/fire/light. I didn’t navigate this illness like some zen master though. It was very emotional and I cried a lot (I still do, only now it’s with relief). Although I felt a lot of frustration and anger I tried to deal with that quietly and not inflict it on anyone, particularly my family. I am fortunate to have family and friends that were supportive, understanding and who listened. By choice I have no aggressive or abusive people in my life. If I did, illness would have prompted me to tune them out or cut them off. There is no need to give those sorts of people an ounce of emotional energy at any point in your life, but particularly when you are facing chronic illness.
There were a few instances where I had bad interactions with healthcare professionals, was badly treated, and even physically injured. These sorts of things should never happen, they are not OK, but the reality is they do sometimes happen. If there were major failings or inappropriate behaviour I always made complaints, for my own closure but mostly for the sake of future patients. I did my best to process, talk it out, give my self some care and space and then, as soon as I could, move on. Dwelling on victimisation was not going to help me so I worked not to, but some incidents took longer to heal from than others. Resilience is a muscle and we can build it.
It has been while recovering that the full force of grief has really hit me. Even as I experienced profound fatigue even I couldn’t get my head around the magnitude of it until it was gone again. Only then did I have perspective on how extreme and how debilitating it was. The chronic pain and constant migraines were horrendous to live with. Only those who experience chronic pain truly know the toll it takes. My heart is with anyone carrying these burdens.
I want to move on with rebuilding my life and leave illness behind me. But before I do I am committed to sharing my experience in any way that can help. I am providing feedback and advocacy in my country and doing what I can to use my experience to support shifting the system to one that is more responsive and supportive of those struggling with these huge challenges.
Even now, as broken as you may feel, you are still so strong. There’s something to be said for how you hold yourself together and keep moving, even though you feel like shattering. Don’t stop. This is your healing. It doesn’t have to be pretty, or graceful. You just have to keep going. — Maxwell Diawuoh
About me
There are many ways in which I am fortunate.
I know I am fortunate to recover from ME/CFS and the recovery rates are very low. I am fortunate to recover from FND as quickly as I did. Complete recovery rates for FND are less than 50% and that normally requires more intensive rehabilitation than I needed.
My academic and professional background is in biological science and research. This really helped me navigate and evaluate health information and find evidence-based strategies.
I have very supportive, loving, and committed family and friends and extended family who live nearby who were actively supportive. My financial circumstances meant that me not working was not a completely unmanageable burden on our family and I didn’t have to access financial support from government agencies (a process that I know can be disheartening and dehumanising).
I have developed enormous gratitude for my younger self for giving me a body of knowledge of meditation, breathing, yoga, and pilates that I can now adapt to my needs.
Some years ago I had a time of significant mental illness and recovery. While I wouldn’t have chosen in my life to go through that and then a major physical health challenge, I think the former prepared me well for the latter. I had already developed resiliency, self-awareness, and strategies for coping with depression, anxiety, and PTSD. I relied on all those tools (and developed more) to navigate the trauma of complex chronic illness.
Postscript about medications
Some additional notes about medications (NSAIDs, venlafaxine, rizatriptan, and propranolol).
I suspect many medications I took prior to, and over the course of my illness caused problems. In retrospect I think there were some I should not have been taking concurrently as there was potential for interactions. (I have made specific complaints and adverse reaction reports in some instances). I am a little hesitant to discuss specifics as I don’t want to trigger nocebo effects in anyone so I will only mention those where I am certain there was a side-effect. I am only one person, what is true for me is not necessarily true for others.
NSAIDs (dicolfenac and ibuprofen)
(See the section above about chronic pain.) NSAIDs were very problematic for me. NSAIDs are not recommended for patients with mitochondrial disorders so I am concerned about their effect in ME/CFS patients.
Venlafaxine
Prior to developing ME/CFS I had been taking venlafaxine for 10 years. I had a history of anxiety and depression and developed severe anxiety in the context of postnatal depression. I believe that taking the medication was helpful and effective at getting my anxiety under control. But I now regret that I took it long-term. I came off this medication (very slowly) after my ME/CFS diagnosis because I’d had good mental health for years and it was the only way to determine if any of my symptoms were medication side effects. Even reducing the dose very slowly over months I still had withdrawal symptoms when I eventually removed the medication completely. This was at about the same time I was having NSAID overuse symptoms. It is hard for me to tease apart which symptoms were from venlafaxine withdrawal and which from NSAID overuse.
Over the years I took venlafaxine I had highly excessive sweating and allergic reaction to sun exposure producing skin rash. Both those things ended shortly after withdrawing the drug. Also while I took venlafaxine I had inexplicable weight gain. Doctors repeatedly tested my thyroid and I saw a nutritionist only to be told I was eating correctly, something I already knew. Since stopping venlafaxine I rapidly lost a lot of weight. Serotonin plays a large role in gut-signalling and vagus nerve activity so I have to wonder what impact SSRIs (selective serotonin reuptake inhibitors and SNRIs (serotonin and norepinephrine reuptake inhibitors) have on the vagus nerve and gut. I don’t know definitively if venlafaxine played a role in triggering any of my illness but I do know I feel dramatically better not taking it. I will say both my GP and my mother (who is a healthcare professional) feel it had an enormous negative impact.
(Amazingly over the course of chronic illness I remained mentally well and did not develop depression. It was enormously challenging, but I felt my emotions were my own, rational and controllable and that I did not have mental illness. I attribute this to having already experienced mental illness and having a range of strategies, self-knowledge and resilience. It is entirely understandable that some people with chronic illness also develop depression.)
Rizatriptan
I took rizatriptan for migraines. My understanding now is that I probably should not have been taking rizatriptan at the same time as venlafaxine. After my experience of painkiller overuse I never took rizatriptan again. Now that my neck and jaw muscles have been effectively treated migraines are not a factor and no medication is necessary.
Propranolol
I took propranolol daily as a migraine prevention medication. After some time of not experiencing any migraines I decided to stop this medication. I suspected it was worsening my asthma. When I stopped taking it my asthma improved, but I was also surprised that the dizziness and vertigo I’d been experiencing was instantly gone. Dizziness had been attributed to FND but I think actually it may have been largely a medication side effect, possibly with a functional neurological aspect exacerbating it. Propranolol, like NSAIDs, is not recommended for those with mitochondrial disorders so I am concerned about their effect in ME/CFS patients.
I currently only take some asthma medication but nothing else. I have definitely benefited from shifting away from prescription medication and towards supplements and nutritional solutions, but to get to that point was a process and required a number of other factors being in place.