I thought I would do a post to share what I’ve recently been going through with my health and have finally been diagnosed with. To my good friends, thank you for all your lovely support the past month or so that I have been off work-basically I want to share the journey I’ve been through to get to this point to hopefully help some people that may be going through the exact or similar things and unaware what they may possibly be suffering from, or how to go about seeking an answer to many of the disabling symptoms associated with these genetic and sporadic disorders. Since being hospitalised with severe salmonella in late 2012 my health has never been stable. Like many I then got glandular fever from a weakened immune system. For roughly the past two years every 6 weeks or so I would get the flu, excruciating sore throats, extreme tiredness, sore muscles and basically not be able to work, exercise or social for a week or so. I then started to notice that anxiety started to creep up on me. Anxiety isn’t something that all people like to talk about openly-and is often still looked upon as there must be something wrong with you mentally. So the up and down immune system continued and the anxiety began to get worst to the point where even though I was completely a happy person-it was taking over the majority of how I was feeling day in day out. In the past six weeks I then fell extremely ill again after quite a few months of strong health-where I was starting to get back into my daily exercise routine (which I’ve always loved but unfortunately would have to keep stopping from the sore throats and lack of energy to even walk to the fridge etc.). I’ve always watched my diet and ate relatively healthy (I do love to eat-but am by no means an unhealthy person in terms of nutrition). With a week off work the Dr’s. told me I just had a re-activated dose of glandular fever and tonsillitis- and that my tonsils should be removed. I thought finally an end to the years of blood tests, Dr. visits and always ‘nothing wrong with my immune system and that I must just be one of the unlucky people that always just gets sick’. With luckily my angel of a Mother being a nurse, I flew to the Gold Coast for a second opinion from a GP and ENT surgeon….where they could tell there was definitely far more going on that just a flu, where sore throats would be cured for life if I were as planned to go ahead with the tonsil removal surgery. FINALLY I was referred to the most amazing Dr. who is on the Gold Coast-please PM me if you would like his details I couldn’t recommend anyone more in tune with listening to people’s symptoms, sufferings and his passion and knowledge for his work is beyond- I’ve ever come across (and trust me I’ve probably seen about fifty in the past two years). He diagnosed me with several auto-immune disorders within my first consultation. I was being listened to. I’ve been diagnosed with the auto-immune disorder ‘Hashimotos Thyroditis’ which is linked to the functioning of your thyroid …and basically my own body attacks its immune system. Sarah Wilson who wrote ‘I quit sugar’ suffers from this disease. I was also diagnosed with severe disabling chronic fatigue syndrome- which arose from the post-infective salmonella. I was also last week diagnosed with Fibromyalgia Syndrome- which is a spinal condition. The key features of FMS include widespread pain especially in your neck and back, fatigue, muscle stiffness, sleep disruption and emotional distress. The only way these diseases and disorders can be managed is through an extremely strict diet with a nutritionist and naturopath…never to eat dairy or gluten again (yep no cheese, ice cream, chocolate ahhh) physio, Pilates-to address spinal disorder... vitamin injections and intense rest. I’m currently pretty much just sleeping throughout most of the days…up to four naps a day…haven’t been able to work or do much other than little bursts of walks and rest between home in Gold Coast and Sydney. Dr recommends working part time over the next 6 months or longer. Basically at this point my immune system recognizes the body as an intruder, and so it launches an attack using adrenalin which creates the severe anxiety and extreme fatigue. In turn your thyroid gland (which balances everything in the body such as metabolism and hormones) ends up attacking itself. This brings on pain and fatigue and a whole list of symptoms I’ve been suffering from (but in the dark as to why) which I want to outline here as if anyone is reading this they may also be suffering from these daily life infringing issues and not know why. -Increased heart rate/blood pressure -Extremely poor digestion (pain and cramping) bladder -Tight chest pain and shortness of breath -Light-headedness, tremulousness and feeling faint and dizzy -Blurred vision, memory loss, lack of concentration, sensitivity to light, hard to focus, -Dry mouth and eyes -Extreme sore throats, especially when swallowing -Stress /extreme anxious feeling that is overwhelming for no apparent reason -Skin problems that were never there before -Get hot and cold very easily -Tinging in the middle of the night and spasms in your hands and legs -Extreme insomnia, waking in the night and general trouble sleeping -Frequent poor tolerance to any exercise regime such as PT sessions or cardio These are symptoms of anxiety but are actually caused by autonomic dysfunction (where as many people with these auto immune diseases just get diagnosed with anxiety or food intolerance and told to see a psychologist or dietitian -when actually it is a genetic illness that has arose and there is an imbalance in the body which is trying to protect itself in order to fight the disease). ‘FMS is common at all ages and in all societies, affecting females more than males. In the Western world, (diagnosed) FMS affects 3—5% of the population, with women accounting for 80—90% of cases’. dysautonomia.au/ I have been suffering from all of these symptoms for the past two years and didn’t know what was wrong with me- I thought I just had a poor immune system and for some reasons was suffering from unknown anxiety perhaps due to work deadlines or life obstacles. I had countless blood tests and nothing ever came back from them, so I am now so grateful I found a specialist who has helped me diagnose and understand the diseases and disorders I’m currently suffering from. The chronic fatigue is the biggest battle at the moment- which obviously impacts your life in terms of not having the energy to socialisie, leave bed, exercise or complete a work day. However with the management of key specialists, a prolonged period of rest to minimise stress to the body, dietary management and gentle eventual exercise such as yoga. I am assured that in 6-12 months or longer, a great deal of my symptoms’ will have significantly minimised and I will hopefully be able to go back to living my normal mid 20’s lifestyle I can’t wait to have the energy again to go for a run and not feel completely beyond exhausted to even stay awake for a whole day, and have the concentration to power though a working day. Along with the overwhelming feeling of anxiety to disappear, my immune system hopefully gaining the strength that it can fight off continual infections and symptoms from these diseases and disorders. It is something I will have to manage for life, however I really wanted to share my story to hopefully help others! I am aware this was a novel, however I felt that if I just posted a direction to a blog many people would not link through and there may be many, especially females that are suffering from these life infringing daily symptoms and not knowing how to go about finding where they may be coming from, what they may have or how they can manage it. Please visit dysautonomia.au/ for amazing information from several of these auto immune diseases I currently now know I have, and you can learn how to reduce your symptoms and hopefully in given time improve your quality of life. I am also happy for anyone one here to contact me as to how I went about this long journey of diagnosis (trust me it was a long, hard one) what I’m needing to do daily (especially at the moment with the severe chronic fatigue) what medications I’m taking, specialistis I’m seeing weekly and the Dr. that helped me get to the point I’m now finally at- a positive, informed, active management path to life at its fullest In the mean time it’s dairy free, ice cream, sleep and starting an e-book on all of the above. Thanks to all my amazing friends and family who have supported me recently (after originally just thinking I had tonsillitis and finding out the disorders I have) being there for me in terms of understanding where I’m at and not thinking over the past years that I’m just a crazy, always sick, forgetful human being in constant stomach pain and continual tiredness…I love you lots x x Sorry about the lengthy post but from going through this myself I really want to and hope this information helped some people on here!
Posted on: Mon, 15 Dec 2014 10:59:03 +0000
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