CFS outcome? & Good ways to learn whilst being sick

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 

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

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. 

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

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