Kelly Ward was diagnosed with Endometriosis at the age of 19, Myalgic Encephalomyelitis at the age of 23 and Fibromyalgia at the age of 25. She has found her passion in raising awareness of autoimmune conditions and other inflammatory conditions whilst embarking on her own healing journey.
Before I began to reverse my poor health, I can’t ever really remember a time that I felt well. The first time I realised something was wrong with me was around about the age of fifteen. I stood in the doctor’s office trying to explain. Every time I stood up, I felt dizzy and had to put my head down on my chest as if allowing the blood to rush to my brain. The doctor performed a few minor tests and I left the office with an instruction to ‘Always eat breakfast.’ A couple of months later, puberty struck and this really was the beginning of the end for me.With puberty, came the monthly cycle. Menstruation bought a tirade of issues including heavy bleeding that would last for days at a time, indescribable pain and severe emotional lows. It’s only as I became older that I realised the lows were cyclical and lasted the same two weeks out of every month. I didn’t just feel sad during these times; I felt apathetic towards life. Another issue that seemed to arise was an indescribable exhaustion during this time. Being younger, I thought this was normal for women to become tired around this time and I tried my best to get on with things. However, the monthly excessive bleeding and pain couldn’t be ignored any longer. As I became older, it became unbearable. I had no choice but to go to the doctors.
A diagnostic laparoscopy was booked and I was scheduled in at the hospital. I didn’t want to go and I didn’t want it done, but not fully understanding the implications of the procedure I did what the doctors thought was best. The results showed Endometriosis which I was told was removed during the procedure through cauterisation. The bleeding however, became no easier and I began to develop pain in bowel too. Two years later, a second laparoscopy was performed and I was once again told that I once again had Endometriosis and adhesions around the bowel. I felt like I was falling apart.
At twenty-three years of age, after trying various birth controls, the decision was made to have a Mirena IUD. This coil helped control the cyclical bleeding and pain, ultimately stopping it completely. I was so pleased to be offered some release from the monthly lows, horrific bleeding and pain that I continued with it for the next five years. Ultimately though, I started to become more and more depressed on this birth control, not just for two weeks out of each month but constantly. So, my consultant suggested I try another way of managing my symptoms in the form of the medical menopause! Bad decision. My system was shut down and I was given HRT to ease the menopausal symptoms. I couldn’t believe I was having menopausal symptoms at twenty-eight. I felt lost, alone and embarrassed about my current situation. It was decided that the treatment should be discontinued and it was back to the hospital for a new Mirena coil to be fitted. The continuous depression reared its ugly head again and I became even more withdrawn. At the age of thirty, I requested to have it removed for good.
During the above-mentioned time, I began university. I trained to become a teacher and managed to qualify with a 2:1. Why do I tell you this? I tell you this because I hardly ever attended university and I am shocked that I graduated at all. Where was I? In bed. There was something wrong, I didn’t feel right. I woke in the morning as if I’d not slept at all. A relentless fatigue had developed and it was following me around like a lost dog. It was there when I woke up; it was there when I went to bed. It stayed with me all the time weighing me down. It wasn’t just a tired feeling, it felt as though my legs were made of lead and it was a constant battle to stay awake. I had to always sit down. A short walk to the shop would exhaust me. I began sleeping more and more. I began missing lectures and asking friends to sign the attendance register for me. I began missing social events as I literally did not have the energy to get out of bed. Friends stopped asking me out which I was grateful for as I didn’t have to hide the embarrassing fact that I felt like I was one hundred and one instead of twenty-one.
I was sleeping all the time. I thought that maybe this could be a side effect of the coil. A two-night stay in a sleep clinic found nothing but ‘normal’ sleeping habits. I was entering all the sleep cycle stages and everything was ‘fine.’ But I wasn’t fine. What was wrong with me? I couldn’t focus in lectures, I couldn’t follow a simple plot on the television, I couldn’t read a book and I couldn’t complete simple tasks. It was if I were in some sort of fog; like I was wandering round in a daze. I had to be mindful and really concentrate to focus on things in my environment. To be present. I felt like I was falling apart.
I decided that maybe I needed more exercise. Maybe gentle exercise to start. I remember one time I set off for a walk around a nearby park. Five minutes into my journey, I had to sit down. I don’t know what came over me. My heart was racing, I felt nauseous; I was hot and cold all at the same time. I sat on the nearest bench. What was wrong with me? I couldn’t walk a couple of hundred metres around the local park.Regardless, of my failing health, I left university with a qualification to teach. But how could I teach? I could barely get out of bed to go to the toilet let alone face a full working day. I was never awake for more than a few hours per day.I woke each morning and was physically sick. I ate food only to be visiting the bathroom in minutes. Back to the doctors again. ‘You have IBS’ he told me. He prescribed medication and a smile. I took the tablets, they did help. I still felt sick though, all the time and worse in the mornings. Allergy testing was ordered and revealed nothing, it showed no signs of allergies. ‘There’s nothing wrong with you’ became a phrase which I would begin to hear repeatedly.‘Maybe I need to take vitamins’ I thought so I bought Vitamin C and a good multivitamin. Hopefully this would help. Months of taking which resulted in no improvement suggested otherwise. What was wrong with me?
The chronic tiredness, the dizziness on standing and the constant sickness was relentless but just after I started working full time, I started to experience other issues. I developed a chronic sore throat and my ears became so painful inside. I felt like I had the flu constantly. My nasal cavities became so inflamed and blocked that one day I literally could not breathe through my nose. Another visit to the doctor was booked. He told me I had developed something called Allergic Rhinitis and sent me to see a consultant in this area. I had to undergo a turbinectomy under general anaesthetic to try and alleviate the problem. It did help the problem but only slightly.
My body continued to ache all over and it hurt even if someone were to touch me gently. I was frightened and felt alone. As everyone else was getting on with their lives, I was sinking further into despair. Numerous trips to the doctor and extensive blood testing showed that I was fine, not just fine actually, my markers and levels in my blood were exactly where they should be. But how could they be? I literally felt like I was dying.
I didn’t go out and had lost a lot of friends. I had a lot of time on my hands. I began to research my symptoms. Results indicated Myalgic Encephalomyelitis M.E/CFS. Could I have this? Obviously, there is no cure for M.E CFS so I accepted that I may have this disorder and began to look towards alternative approaches such as acupuncture and cupping to help with the chronically low energy levels and widespread body pain, the worst of which had now resided in my head as ongoing head pain. I attended acupuncture sessions twice a month for around a year and half.
The practitioners told me that the results of acupuncture would be cumulative and I would have to have regular sessions to feel any benefit. I so desperately wanted to feel well that I did just that. I spent over two thousand pounds on acupuncture and felt just as much body pain at the end of the year treatment as I did before I began.The acupuncture wasn’t working and wasn’t going to. Enough was enough. I’m not saying it is ineffective for everyone and I’m not saying it doesn’t help with other symptoms. But in relation to helping me with what I was suffering now, the indescribable widespread body pain, it was not successful. What had encompassed my whole being at this moment in time, whatever it was, was winning. I was sinking daily.
The head pain had become chronic. The pain pressing on every single part of my head was constant. I was like the most phenomenal pressure on my skull. It radiated up the back of my head, over my skull, into my temples and down the side of my nose. I had constant pressure behind my eyes and it hurt to move them, especially if I looked up. When the sun shone it hurt my eyes and it hurt my head. I stayed inside on the rare sunny days. Loud noise was unbearable. I was dizzy every time I stood up and tilt table testing presented as normal.
The months dragged on and everyday was a struggle and one winter’s evening I remember very clearly. I was now at such a low functioning point, that I thought things couldn’t get much worse. They did. I went to turn the light switch on in the bedroom and to do this I had to bend my wrist around a corner. Boom. Something else was wrong. My wrists hurt. Over the next coming months pain began to present in each one of my joints. My wrists, my knuckles, my knees. Rheumatology bloodwork presented as normal. There’s nothing wrong with you. I felt like it was all in my head. But I wasn’t, this was purely a physical thing. I was suffering real physical symptoms.The tension in my muscles and joints had now reached a level whereby I could take no more. The symptoms kept popping up, they kept firing at me from afar and I was grounded. In June 2005 I was diagnosed with Myalgic Encephalomyelitis (M.E). I finally had a name for what was wrong with me.It was shortly after the diagnosis, when something happened that I believed at the time, to be a positive thing. I know now it only covered the symptoms. My doctor prescribed me the opiate pain reliver Tramadol. I reluctantly took it at this point I was desperate. Within an hour the change was incredible. It was if a miracle had occurred. I had energy! My body did not feel heavy; made of lead. I did not have to sit down to cook dinner or perform just about any household task. I could get household jobs done. It gave me a sense of contentment whilst it was in my system and it reduced the pain in my body especially my head pain. This is what it must be like to feel normal! This is great! I could function at work, I could concentrate a bit better. I felt alert whilst I was on it. I was twenty-eight years old and using Tramadol to get through my day. But I needed it I told myself. So that was ok. It wasn’t ok. When the effects had worn off, I was worse off and ultimately my body became accustomed to it and it stopped working as efficiently for me.
Back to the doctors I went. Falling apart and hoping for an answer. His answer was in the form of antidepressants. I tried both SSRIs and SNRIs, the latter being more successful for me. They helped with emotional symptoms but turned me into a zombie. I was taking them along with Tramadol and another pain reliever called Naproxen which is a non-steroidal anti-inflammatory. A cocktail of very strong drugs, all probably interacting negatively with each other I thought. So, there I was. I got out of bed at 8am and I went back to bed at 4pm. Sleep was unrefreshing; I never felt like I’d been asleep. I was struggling and sinking fast. Losing hope daily.Without Tramadol, it was a daily battle to get to work and getting to work on time had become a problem. My work was suffering and one afternoon my boss called me into her office. I broke down as I told her ‘I wasn’t feeling very well.’ She sent me home. To be a teacher and to be sent home is not good. I was embarrassed at what I had become, almost trying to hide it from the world. Hiding it from my boss was the biggest challenge. Looking back now I should have been more vocal about my struggles but at the time I needed a job; I needed to work. I returned to work the next day stating that I was fine and able to carry on. I will always remember the deputy head being outside my classroom listening to my lesson. I knew I wasn’t fine but now, so did he.
Life at work became increasing more difficult and my boss became increasingly aggravated at my late arrivals and early finishes. And understandably so. I was failing at work in a profession whereby you must be at the top of your game both mentally and physically. It wasn’t fair on the pupils and something had to change. That change came on a Thursday afternoon. I remember it clearly. I had fallen asleep at my desk, on a chair at the back of the classroom once the children had gone home. I was mortified; this wasn’t fair on the children. They needed somebody vibrant and full of life who could be a good role model and shape their future. Not someone like me. The next day, I handed in my notice of resignation.I started looking for a new job, but very stupidly in the same profession.
I secured a position in a lovely Catholic school. The ethos was incredible and the first Mass nearly bought me to tears. The faith and belief in God was mesmerising and listening to children sing beautiful hymns about God’s ability to heal the sick was choking. But, why couldn’t he heal me? I loved working here and the people were lovely but once again just as my first academic year was ending, I was bought in the office regarding my early departure from work time. Initially too embarrassed to say I was going home to sleep, promises were made for a better year next year.
The following year consequently saw an increase in Tramadol to function. I then began to lose my memory. All over body pain continued to increase and despite weekly massage sessions, it never improved. I was given a further diagnosis of Fibromyalgia along with M.E/CFS. During this time, I also met my partner. It wasn’t long into dating when he became increasingly concerned about my health. He was a real gym goer and believed everything could be solved through exercise. He believed the cause of all my problems was laziness and the fact that I didn’t exercise. Maybe he was right?
I joined a gym. I took some Tramadol and waited for it to take effect, then went to the gym. I felt nothing but sheer hatred for the gym. To see all those physically active people full of energy made me doubt myself even further. I knew there was a real, physical medical problem with me but still felt jealous, robbed of a life that I would like to have had. The gym never made me feel any better, it only made me feel worse both mentally and physically.I was lost. I joined every single support group on social media looking for help. Looking for answers. One afternoon I was scrolling through and I saw a post that caught my eye. It was from a lady who was in a similar situation to me who had found relief using something called LDN. LDN is short for low dose Naltrexone. I was hopeful as I read the introductory description, ‘Low-dose naltrexone holds great promise for the millions of people worldwide with autoimmune diseases.’ I read every article I could find on LDN. It was a drug used in higher strengths to treat cancer sufferers but had been used more recently to treat autoimmune diseases. This sounded promising until I read the description further. This drug could not be taken if you were also taking Tramadol. I had to make a decision. Should I trial the LDN and try and come off the pain reliever Tramadol? Would I be able to do it? If the LDN started to help me I would. I found a reliable compounding pharmacy in Scotland, had an interview over the phone with them and they dispensed the drug.
A couple of days later, the drug arrived. I felt nervous about taking it but hopeful of a reprieve. The therapeutic dosage range for LDN is 1.5mg to 4.5 mg. You had to start on the lower end of the dosing spectrum and titrate upwards until you found a dosage which worked for you. I took it as prescribed but could never get over the 3mg mark as it gave me a painful stomach. I couldn’t take my Tramadol, the pain in my body and head was horrific and now I had pain in my stomach too. I managed two months on this drug but unfortunately it wasn’t effective for me.I was back on my pain relief which at best took the edge of the pure physical pain.
I continued to research. I just wanted some relief from the constant widespread muscle pain and head pain. I saw an article on Botox being used to effective treat migraine headaches. I didn’t have migraine headaches but maybe the Botox might help to release the tension in the muscles I thought. I booked an appointment with my doctor to discuss the idea. I was very fortunate to have, at this point, a fabulous doctor who really did listen and try to help. This had not always been the case when I was younger and was registered elsewhere however, for now I was fortunate to have a doctor who really did want to help and I can only commend his efforts. He wrote to the hospital, and I waited eagerly for a response. A couple of weeks later the response came back. The answer was I wasn’t a suitable candidate. They wanted me to try more medication. They told me unless I had tried both Gabapentin and Topiramate at very high doses, they refused to see me. I didn’t even get an appointment.
I had visited Rheumatologists, Neurologists, Allergy specialists, Gynaecologists, Chiropractors, Gastroenterologists, Podiatrists(!), Massage Therapists in both NHS and private hospitals. I’d had blood drawn vial after vial and two MRI scans on my brain both presenting as normal.
I'd lost hope. I stared and the computer screen in front of me. I didn’t want to die and I didn’t have suicidal ideation, I just didn’t want to exist anymore. I pressed purchase on the screen and sat back as I realised what I had done. I had purchased a book on how to end my life using imported barbiturates from Mexico.I lay in bed for two weeks waiting for the book to arrive. During which time, I asked my partner to leave. He was young and healthy and subconsciously my future wasn’t certain so how could our future be certain together. I didn’t want to die, I just wanted the pure physical pain and constant exhaustion to leave. I just wanted to be normal. He left which was very upsetting and the book arrived. I read it. I examined my options. I could order the barbiturates and take my own life or I could have the book in the house, feeling safe in knowing that if things were to get so bad, I’d have a get out clause. So, I put the book in a drawer and continued to fight.
It wasn’t long after this that I began to lose my memory. I would start forgetting words and muddling up sentences when I spoke. I knew I was losing my memory but I was too embarrassed to admit it. I was a teacher after all. Out of all my symptoms, I think it was the memory loss which really made me sit up and take notice. Something had to change. I continued to research my situation and came across a video online that had been put together by two doctors called Martin Rutherford and Randall Gates.
Dr Martin Rutherford is a Functional Medicine Practitioner and Chiropractor, and Randall Gates is also a doctor who specialises in the field of Chiropractic Neurology. What interested me the most about both of these doctors, is how they spoke about the whole body in a holistic way. They discussed how everything in our bodies, every chemical reaction, every symptom, every bodily system is interconnected and related. They spoke about the body as whole body entire entity and explained how medications only improve symptoms and don’t address the underlying causes. As I watched this video, each line they spoke, seemed as if they were speaking about me. Tears rolled down my face. In the footage, they talk about the major causes of inflammatory and autoimmune conditions, such as an overactive stress response system, toxin overload, gluten sensitivity and infections and how all autoimmune conditions can basically be reversed. From the moment I watched this video, I knew exactly what I needed to do to get well and for the first time in my adult life, I felt hopeful.
From watching the video, I instantly knew that if I ever wanted to improve my health, I needed to change my approach to life and the first area that I needed to change was my diet. I made a vow to myself that I would try this one final approach, the autoimmune diet, to reverse my own autoimmune-like symptoms and help with my inflammatory conditions.
From my research into autoimmunity, I found out that autoimmune disease develops when your immune system, which defends your body against disease, decides your healthy cells are foreign. This then results in your immune system attacking your healthy cells. Autoimmune disease can affect one or many different types of body tissue. In Rheumatoid Arthritis, for example, the immune response triggers inflammation in the joints. Fibromyalgia and M.E. are not classed as Autoimmune diseases, but they do present with strikingly similar symptoms.
In order to reverse autoimmune conditions and associated symptoms, it is vital that the body brings the immune system back under control. Unfortunately, conventional treatments include managing the isolated organ systems that are being affected, often by using drugs. These drugs usually have harsh side effects and even though they are effective at reducing various symptoms, ultimately, they suppress the entire immune system. I believe this is what had happened to me.
I have been following the Autoimmune diet for eleven months now.Along with implementing this diet, I have also made a number of other changes to achieve a better quality of life. I began my own healing journey by following the six steps below:
The Autoimmune Protocol is a diet that helps heal the immune system and gut lining. It is applicable to any inflammatory disease. The AIP diet works by calming the inflammation in the gut and inflammation in the body. Evidence suggests that autoimmune diseases can never be cured, but they can be put into remission. This diet requires dedication as the diet is very restrictive in terms of what can and cannot be eaten. Since beginning my own dietary journey, I can say that I have learned how to cook. Cheese on toast and frozen ready meals are no more! The dinners are simple and fresh and help the body to heal. Check out autoimmunereversediet on Instagram for examples of AIP compliant meals.
Whenever I heard people talking about gluten intolerance, I didn’t believe it could cause such widespread problems. I was very aware of Celiac disease and the need for Celiac sufferers to avoid gluten, but I wasn’t aware of the issues that gluten could cause to people with autoimmune diseases or people predisposed to developing autoimmune diseases. Gluten literally is a death sentence to autoimmune sufferers. Apparently, gluten firstly causes inflammation in your gut. The proteins in wheat irritate your gut causing an inflammatory response to occur. This increasing inflammation causes further problems in the form of intestinal permeability (also known as Leaky Gut).
Leaky Gut is when things like toxins, microbes and larger undigested food particles, escape from your intestines and into your bloodstream. They can then travel throughout your whole body using the bloodstream as a transportation system. This is problematic because your immune system recognises them as ‘foreign bodies’ and attacks them. Gluten is the number one cause of leaky gut but other inflammatory foods like sugar, diary and alcohol can also be responsible as well.I consulted various Functional Medicine doctors who suggested I began supplementing my diet with L-Glutamine which is an amino acid that is a building block of protein. It helps to improve gastrointestinal health acting as a vital nutrient for the intestines to rebuild and repair. It is also an essential neurotransmitter in the brain and helps with memory, focus and concentration.
Toxins can be found hiding in a wide variety of places. They can be found in our foods and other chemicals typically found in the home, like certain cleaning agents. When exposed to these they begin to add to the total toxic load on our bodies. Toxins can also come in the form of medications, including NSAIDS like Ibuprofen and Naproxen, steroids, and antibiotics. They can also however, present in the form of environmental toxins like mercury, BPA from plastics and mercury. It is important to try and decrease your exposure to toxins.After exactly two weeks of following the Autoimmune pale protocol, I decided to stop all medication cold turkey. I wouldn't advise this approach to others but for me it was the only way. I am thankful to the drugs for enabling me to function and helping me through the most frightening of days. I am also thankful to them for enabling me to hold down a job and keep a home and the relief that they bought me even though only temporary. But, after at least five years on medication, it was time to say goodbye. I also rid my home of any potential toxic burdens.
Apparently, there are a large number of infections, both bacterial and viral, that have been known to exacerbate autoimmune conditions. These need to be checked for by a doctor and eliminated if present. I was checked for literally everything but nothing was found.
Practising regular stress reduction techniques like meditation and yoga is useful if you want to strengthen your immune system. Now my CFS has resolved, I practise yoga once a week. I have also recently started weight training in the gym.
Supplementation is useful if you are suffering from an autoimmune disease. I currently take a Turmeric supplement, Magnesium Glycinate, a good quality probiotic and prebiotic, Omega 3 fish oil, Vitamin C and Coenzyme Q10. For the last twelve weeks I have also taken medicinal CBD oil which has improved my sense of well being massively. By using this oil, I also hope to see an improvement over time in the chronic pain from which I suffer.
I noticed no improvements whatsoever during the first thirteen days on the AIP diet but something very strange happened on day thirteen. Thirteen is now my lucky number. On day thirteen, I woke up and for the first time in years I didn’t feel chronically exhausted; I felt like I had actually been to sleep! For the first time since being a child, I feel a 'normal' energy - not a pure, physical, constant exhaustion. The lead feeling in my legs that had previously hounded me since I was a young teenager, seemed to have disappeared. When I stood up, I didn’t want to immediately sit back down again. I walked up and down the stairs to check. Yes, there was a definite change. I had a sort of energy. I was gobsmacked. It really was nothing short of a miracle. Never did I ever think I would see this day. My head pains were still extremely bad and the pressure behind my eyes was still there. My muscles were still painful and my joints still ached BUT they didn’t feel as 'on fire' if you like. My throat and ears were still sore and painful and I felt as if I had a cold but the increase in energy was positive. It was new to me and for the first time in a very long time, I felt hopeful. That night was the first night in a long time where I didn’t go home from work and get into bed.
Currently, I am still in widespread pain. Consultants suggest this is from chronic inflammation of the brain, soft tissues, muscles and joints throughout my body. I continue to fight for my health daily. I don't look sick and hear this a lot. A recent round of blood testing once again showed that I'm healthier than ever, a result which leaves me feeling frustrated and alone. However, I know I am not alone and there are millions of people out there who also exist in a state of chronic pain. These people, I believe, are the bravest people I know because to face each and every day in pure, physical pain with limited hope, is no mean feat.
At the start of my healing journey I decided to set up an Instagram account called autoimmunereversdiet and an online blog called Reversing Autoimmune & Inflammatory Conditions Through Diet The aim of these blogs is to raise awareness of all autoimmune and inflammatory conditions and to provide support for people on their healing journeys. It has been so nice to connect with others in similar situations. I feel the only people who truly understand my plight are those online. My mum still thinks all my problems can be solved with a hot cup of tea. I pray that a cure will be developed in the future for autoimmune diseases and inflammatory conditions like M.E and Fibromyalgia and I hope to see it in my lifetime, but until that day comes, I sit and wait expectantly along with millions of others sufferers.
Written by Kelly Ward
Kelly Ward, creator of autoimmunereversediet, has spent the past eleven months following the Autoimmune Paleo diet. She was diagnosed with Endometriosis at the age of 19, Myalgic Encephalomyelitis at the age of 23 and Fibromyalgia at the age of 25. She has found her passion in raising awareness of autoimmune conditions and other inflammatory conditions, like Fibromyalgia and M.E., whilst embarking on her on own healing journey. Kelly graduated with a degree in Education/Science. She is currently working as a Primary School Teacher in a school in Manchester.
Reference:Martin Rutherford Fibromyalgia Cutting Through the B.S. - YouTube 10th May 2017 from https://www.youtube.com/watch?v=qG3MWTRmPI8
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