Hi, I'm 21 and I'm in my final year of university in the UK. I have just been diagnosed with Chronic Fatigue Syndrome and I just want some advice from the community. I've seen a lot of comments about CFS not being a real condition and that people diagnosed with it either have ME or something else but if I'm honest I don't really know what to do with that information. I feel like I've hit a brick wall at the doctors now. I've been feeling unwell since last April and it's taken until now for the doctors to rule everything else out. I still have another appointment booked next week to talk about it but I want some advice from you guys. No matter how much I sleep I still feel awful. I have painful headaches every day and a new eye twitch that doesn't go away. I constantly feel tired. I feel like I want to nap all the time and my muscles and joints ache from the moment I wake up. Now I'm to the point where I'm emotionally exhausted. I am always close to tears and even talking to people feels like too much for me sometimes. I struggle to do the washing up, let alone make it into uni. I'm at a crucial point in my studies but as I type my essays I can't remember words like 'contradict'. It really gets in the way of my flow to the point where it takes me weeks to do work I used to be able to do in days. I'm on a calorie controlled diet but still not losing weight and my thyroid tests are coming back normal. This illness has become very isolating and I feel like the treatment isn't going to help. I've done CBT in the past for depression and anxiety but I feel like this is something very physical and it's not all in my head. I might not be able to do Graded Exercise Therapy because I have something called Functional Hallux Limitus which basically causes me great pain when I walk or stand. I can walk for maybe an hour before it hurts but I can't stand in the same spot for more than about 15 minutes. This wasn't as bad before but is getting worse with the addition of CFS. My family and boyfriend are very supportive now but before I got this diagnosis I honestly think they thought I was just being lazy.
What other treatments can I try? I've started trying to do 10 minutes of yoga every day (It's all I can manage) and I've heard good things about acupuncture but I'm a bit apprehensive. At the moment I stay in the house most of the time and limit social activities so I don't feel like I'm dying the next day. Any advice whatsoever would be appreciated, whether about potential treatments or otherwise.
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bakeacake33
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I suggest investigating all avenues outside of the NHS, i.e seeing an endocrinologist, rheumatologists, neurologists etc. I did all that and it yielded nothing, but it's best to rule everything out.
In the meantime read this book by Sarah my hill - Diagnosis and Treatment of Chronic Fatigue Syndrome: Mitochondria, Not Hypochondria.
Adjusting things like your diet, meditation etc make a big difference, especially when you end up constantly spiralling out of control.
After following Sarah's protocol for several months I made the biggest changes after following the advise and protocol from "gotmag.org" and there's facebook group attached. Which in short is about re-mineralising your body, getting rid of all the unbound iron. Detoxing and letting your body heal the bugs, by providing it the nutrients that it needs.
Took me two years to get to this stage and the realisation that conventional doctors are not trained well and you need to become your own doctor. There's blood tests to run, but you can start with all the stops and starts in the meantime (slowly) and I bet you will see benefits
What a lousy time to develop m.e!! Suggest you read Sara myhill book and if monies available have the tests she recommends.ie mitochondria function levels. Mine are 0.09% of lowest level of normal. Sadly expensive but would prove that you actually are sick especially for those who may need to claim benefits but more so for all the sceptics who exist... including GPs. Am on a wheat gluten sugar and dairy free diet. Supplements may help. Haven't noticed any improvement myself. Main thing is that you pace yourself in all you do. If your body tells you that you need to rest. Rest. If you don't the symptoms will increase. Listen to your body. If you need to sleep.sleep.Brain fog is common. Give yourself a break from your studies.rest.come back to it later. I suspect that you may have problems with concentration. Don't be afraid to speak to your tutor about your situation. They really should be made aware. It is nothing to be ashamed of!!. It's an autoimmune disorders NOT a mental health issue and has many varied features to it. Get them on board and make sure you have someone you can offload to. It's a frustrating illness and by it's very nature can impact on your mood especially if you see little progress. Be patient especially with yourself. Ease up on as much stress as possible. Supplements gaba helpful for stress. Hope you find this helpful. Really wish you well.
Thanks for your advice. I'm definitely thinking about trying a gluten-free diet to see if it changes anything and I'll think about that mitochondria test.
Maybe try goats milk.cheese etc.not soya and definitely no sweetner with aspartame. Supplements can help with depression as well as anxiety. Your studies should soon be over. Good luck!!! Once that stressors over time to tackle major symptoms of m.e. perhaps you could take a look at mindfulness too. Living in the moment. For now,do what you are able. Leave what can be left until uni's finished. Find a friend to offload to. Later on maybe join the m.e group.you may even have a local one. I think The Unrest film is out on dvd soon.,... supposed to be good re experience with m.e.and accept...it is as it is. Wishing you all the best
Thanks for your concern. It’s not great at the moment. My symptoms are worse and I’m not bed bound but house bound certainly. The doctor hasn’t given me a single piece of advice on how to manage it and so I’ve decided to have a private second opinion. I found an endocrine specialist who thinks it could still potentially be a thyroid problem. I won’t see him until the end of April. I’ve been referred for pain management on the NHS but have no idea when that will happen or what it even will consist of. The doctor treats me like I’m a nuisance so I’ll probably change practices after I’ve seen the specialist. I doubt I’ll find anyone sympathetic though.
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