CFS outcome? & Good ways to learn whilst being sick

Brain and nerves
1

Hi there. 

My name is Katie and I'm 18 years old, I got diagnosed with CFS when I turned 13, and I've been struggling ever since, as I'm sure anyone with this terrible illness does.

I was wondering if any of you had any tips on getting better? I have tried over & over again to do what the doctors have told me - Eat better & do Graded exercise therapy. This never helps me. I don't know if I've not stuck to it long enough or if there are other ways to get better? I just end up in the same cycle - I try my hardest to do exactly what the doctor advises, it doesn't work & makes me sicker, I then give up and get depressed over the whole thing, I get motivated to get better eventually & then rinse and repeat.

I'd love to know what has helped you improve/get better?

The other thing I wanted to ask other people in the same situation is how have you found ways to learn whilst being sick? I've wanted to be a counsellor or a professional in the psychology world ever since I was small. Obviously though, since I got sick before I even managed my GCSEs my hope of ever getting there has deteriorated. I did do 4 GCSEs from home but this made me very ill and I've been almost traumatised ever since especially because of the rushed nature, pressure and time constraint involved with normal learning. 

Are there any sites online in which you can earn proper qualifications without too much pressure/time constraint? I think this would be ideal for me to get re introduced into learning and hopefully 1 day where I always wanted to be as a kid. 

Looking forward to your replies and let me know if I can help any of you guys with anything smile 

-Katie

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You sound like how I was. I have recovered using pacing. It sounds to me like you are doing way too much hence you never getter better, I use to do that.

You have to work in very,very tiny steps. The first step is finding how much you can do without feeling bad, then work from there, very,very slowly increase your activity. Then stop at that level for quite a while, then move on again. 

I can now cycle 60miles after doing this for 3 yrs. when I started I could barely cycle for a minute and I had a confirmed diagnosis of cfs

Best of luck 

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@wknight Thankyou for the advice good luck to you too!

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Katie--I'm so sorry you got ME/CFS, and at such a young age. It's very alarming to me that your doctor is recommending Graded Exercise Therapy (GET). This therapy, along with Cognitive Behavioral Therapy (CBT), was recommended by the PACE trial. That trial has been largely debunked by the medical community. GET can make people worse and cause them to crash, as it did me. Many doctors worldwide still "have not gotten the memo" and continue to prescribe GET. They are doing a great disservice to their patients. I've had this illness for many years. Here's some information I've gleaned over this time. Pacing and adequate rest are critical for improvement. Try to stay within your energy envelope and avoid crashes. There are some cutting-edge therapies that help subsets of people, but probably a very small number of doctors know about and will prescribe these therapies. The therapies include low-dose Naltrexone (up to 4.5 mg) and various anti-virals, like Valcyte. Also, gamma globulin infusions (very expensive) can help. There's a sea change going on now in ME/CFS research, so there's a lot of hope for new treatments and understanding of the illness. You're young, so there's every chance that you can get better. 

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Hi phantomokay

You are young, and that is in your favour. Today there is at least a recognition that this crazy disease exists! Most people on this site sadly didn't get that recognition. Tips. Stop beating yourself up, you are trying your best. Accept you will need support. Take it in whatever form you can. Cry when you need to and laugh out loud when you can. Add tumeric to food it's an anti inflammatory. Add thyme to food or drink it, it helps the nervous system. Take meds when it's impossible because they will help you normalise. LDN is good for re-kicking the immune system. Painkillers will kill pain. Exercise is important, because you need to stay strong, but it must be something you can pace yourself with in a healthy natural way. Eat berries and honey, avoid all processed food. Love and be loved. Have kick ass fun occasionally. Allow yourself to Be loved, because you'll need the emotional support, if you haven't enough people get a cat or a dog. Believe that their will be an end in sight, believe that intelligent people will research this and it may get easier and manageable. And you can and will become a therapist if you stay with it. There are courses out there that let you take your time. Your life experience will help you become a great therapist. Xx 💓 Julia

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Hi Katie

Sorry to hear about your plight with this damn awful disease. I have had it around 21years now and have been housebound for years. but was about 38 when I had to take ill retirement from nursing. So at least I had a career. Whereas you have been poorly from a much younger age. I was ill from age 13 for seven years which I have been told could well have been ME but eased off and lay dormant until I was unwell again later on. At that time I was treated as anorexia nervosa. Which was part of it but I did also have several of the major symptoms of ME. I have known children below age 10 with ME .

I am dismayed that you have a GP who has advocated graded exercise as the road to go down. Sounds like it has not helped you which is unsurprising. It is the only thing a lot of GPs have to offer. That and CBT and counselling. It might help some but on the whole has made many a whole lot worse to the point of ending up bedbound. Your GP has not helped you but I understand how some people trust their Dr. Especially when desperate for a reprise in their health. Sadly ,often GPs get things wrong with some health issues, medication etc .

The best approach is to take each day as it comes. I take each hour as this disease fluctuates so rapidly pace yourself as others have advised. This goes both physically and mentally. You already know how mental activity can floor you just as much as physical from doing your GCSE'S. Well done for getting through them though.

Listen to your body as only you know how you feel. Don't let fully fit people make you think you should be out and about doing things. Things you know tire you too quickly. I am not saying lock yourself in a room never to be seen, but step back and assess how things have put you back in the past . being selfish can really go a long way in this disease. Although I prefer to call it self preservation . because that is what it is !

Have you ever been referred to an ME specialist?

I hope you can find some long-term respite from this, but can be a long road. Take it steady avoid snake oil type treatments like the graded exercise etc. I never found vitamins made any difference. I have been gluten, wheat, dairy free for years as intolerant. I am moderate to severe ME and don't feel any different avoiding each foods. But it does help my IBS. I would not stop avoiding them though just incase ME did exacerbate. Some do though feel an improvement with vitamins and diet change. I had always been veggie anyway. I believe meat, especially red, is no good for the body. Is carcinogenic.

I am rambling now i think. So will stop. Don't hesitate to ask more questions and share your own experiences . Everyone is lovely on here .take good care x

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As I mentioned I was ill for seven years from around age 12/13. So never went to school again. No home tuition other than amusing myself with things. But when feeling better I worked voluntary in a children's nursery. Then was given a chance to train as a nurse .I did and passed with flying colours. My childhood dream of being a nurse fulfilled.

After that always worked in paediatrics. Did a years course in it . Then after another two years went to great Ormond street course and reached the level of senior , senior staff nurse. Yes came the time ME destroyed all that. But it was nearly 20 yrs in nursing from no formal schooling since 13 years old. I am just sharing this in hope it inspires people to never give up on their dreams. One day , you just never know . And that is from a person who is badly affected by ME. A positive outlook is better than a negative one . Even when all the chips are down. Take care we everyone x

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Janet, you are amazing. Senior Nurse! I bet you were a kind warm nurse who helped people feel better just by being able to understand what being sick feels like. Hope you have a nice wkend. 😊

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Thankyou so much for sharing your experience with me and everyone else.

I can only imagine what you've gone through, but you did amazingly to become a senior nurse when you got the chance. I don't know you, but I'm proud of you for that! 

My GP didn't really do much at all. Just thought I was a dramatic teen not wanting to go to school and referred me to a counsellor. Later on after my counsellor saw I was genuine, she referred me to an Occupational therapist (paediatric). The OT was the one telling me to Diet and do GET, I tried super hard because she was so kind and so assured in herself that it would help, but like I explained in my original post it makes it worse, over & over. 

Yea, I try to do what I can when I can but it's super hard. My mum was recently diagnosed with chronic migraine with aura, and she was the one who enabled me to get out of the house, now she's in the same situation as me.

The neurologist that diagnosed her told her that CFS/ME is closely linked with migraine with aura. It's often mistaken for CFS/ME and vise versa. I tried mentioning this to my GP but she didn't really respond, and shrugged it off. It's an avenue I'm going to try going down though, with other doctors and see what their opinion is. If anyone reading this is interested in migraine with aura I'll post a link here: https://www.mayoclinic.org/diseases-conditions/migraine-with-aura/symptoms-causes/syc-20352072 

Thankyou on congratulating me on my GCSEs I didn't get many but I did my best. I payed a price physically but I am proud of myself.

I made the mistake of ignoring my body completely at the OT's advice, and went downhill very very quickly. I was a kid so carried on doing it and got extremely unwell as a result, if I'd have ignored her and listened to my own body I wouldn't be as bad as I am now, so this is great advice for anyone with this condition.

Don't worry about rambling, you seem lovely and I'll read your ramble if you want me to

It's inspiring that you got that far without formal education. When you're in school (or home tutored like I was) you feel like it's going to be the end of the world if you don't pass your GCSEs, and that's why so many people my age are getting mentally ill/stressed over it.

Again I'm super proud of you, and it probably doesn't feel like it but you're an inspiration

It was lovely to read your story and if you want to share more I'm here in private message or on this board

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Awe Kay thank you so much for your lovely words. Truly appreciate every word. So sorry to hear of your mum having dreadful migraine. I used to have terrible migraines prior to ME. It actually then got worse . I was put on gabapentin for nerve pain. It did practically nothing for it but was like a miracle for my migraine. I had constant migraine for well over a year. Was gone just like a light being turned off on the gabapentin . I have been on the gabapentin for many yeas now. Still does s nothing for nerve pain but I have never had a migraine since. Sometimes I get a cluster headache. Usually brought on by excessive light. I can't stand bright sunlight or bright light. Even though housebound I wear prescription sunglasses inside as well as outside and have curtains closed. 😎

I will send that link to another friend with ME who is currently being investigated for migraine with aura. Thank you Kay 😃

I did an a\o level in psychology at night school when I was still working. And just the exam in human biology and passed.

I think we should all be very proud every day we get through with damn awful disease ! Big group hug !🤗

I haven't come across private messaging on here yet . but will have a look . stay as positive as you can . take care x

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Thank you Julia. I tried my best and did feel I was able to understand better than some people I worked with . !

I loved nursing. And i always felt so privileged looking after children. It must have been so hard for parents to put their trust in us . take care Julia x