advice please for mum of teenager with cf

Hi

a close friend of mines niece had CFS from age 12 she became bedridden couldn't attend school etc when she was 16 her mother heard the piano being played she ran up stairs to see her sitting at the piano. She had got out of bed . Weak but felt a little better. She went on to a full recovery . Caught up her education etc...

no miracle cure just time and the bodies ability to heal . But don't give up hope  

Prognosis is pretty good for teenagers, but we don't know why, and don't know what the best thing to do is. The majority do fully recover without any medical intervention.

Personally I think it could be helpful to try to accept that she'll fall behind with school while ill, and focus just on what school work she most enjoys while also making room for her to relax and play. It could well mean that she'll need to delay exams and change plans in the event of recovering, but trying to push through and keep up will lead to a really miserable period while ill and surely place her body under extra strain.

Dear Katharine, I was diagnosed with chronic fatigue many years ago, but when my son was experiencing the same symptoms as a young teen, after seeing a dozen or more doctors, we went to Mayo Clinic, and he was diagnosed with Postural Orthostatic Tachycardia Syndrome instead. Because there is a lot not yet known about  chronic fatigue, I would recommend, if you have not already done so, to get a second opinion or a third.  My thoughts are with you as I know how heartbreaking this can be. It's cliche' but just try and take one day at a time.  My neice also had similar symptoms and after a year or so, is almost back to normal. My son is getting his Masters and looking into PHD programs now.  He is not completely recovered, but is doing much better and has learned a lot of coping skills.  As others have stated, this can get better.  Take care of yourself because you need to be strong right now for her.  You are not alone.     

Hi Katharine,  I have Fibromyalgia & ME/CFS and it dates back to my early teens, I am now 36.  I am a case that it hasn't gone away with time but it didn't start from an illness which it has done for some others.  I am an Architect, I am self-employed, have a very loving husband and two great kids (9&6yrs old).  I have helped physically build my own big extension doubling the size of our home and volunteer at Brownies.  I have got GCSE's, A-Levels, GNVQ adv & my degree.  It wasn't easy, but I've achieved alot!  My symtoms of the condition have varied throughout my life. Sometimes I was more able than other times.

I wasn't actually diagnosed until about 2 years ago.  I thought my symptoms were normal and my mum thought I just had a bad back.  This has worked for me and against me.  For me = I pushed myself continously to achieve what I wanted. Against me = maybe if I had rested, got extension on deadlines I would achieved higher grades and my ME/CFS might have remained at a mild/moderate level?

My advice regarding your daughter wanting to be a doctor would be similar to what I did (if possible).  I didn't do the 7 year Architects degree.  I did the 3 year Interior Architectural design degree with 2.5yrs out experience.  I then proved my ability out in the work place to achieve exactly the job I always wanted.  Maybe your daughter needs to consider and research another area of medicine she could be happy with?  If she still has ME/CFS at even a moderate level, let alone severe there is no way she will manage the hours and physical side of being a doctor.  She won't manage the study needed to get there.  In my first year of study we were doing 60 hours a week.  I collapsed big time!  On top of that during that year a was suffering badly continously.  The physical and mental side of it was too much and I absolutely hated it!  From my understanding the whole of training to be a doctor will be like that and working as a doctor.  Unless she is cured of ME or becomes extremely mild it could be a job she struggles to train for but can never actually do because of the mental and physical demands.  If she is struggling with school I'm afraid she will never make it.

I would suggest with my whole heart to find another job which can be possible for her.  No-one wants to train for a job they can never do.  She loves medicine so maybe a nurse position is more suitable?  You get part-time nurses more than part-time doctors.  If in the long-run the ME calms down she can then maybe upgrade?   

I now have moderate / severe ME which is getting worse.  I can't play with my kids. I can't cook a meal. I walk using 2 walking sticks or have to use my mobility scooter.  I struggle to remain at the table for an evening meal.  If I had known what I would be like physically at only 36 years old I would of not pushed myself so much when I was younger.  Mentally I can't think of a whole week in one go without becoming ill.  I can't remember if I've done things or what I've said because my short-term and long-term memory have become so bad.

My advice if you are an ME sufferer is to not continously over push yourself.  Yes over push yourself in the short term if it's to achieve something which means alot to you.  However, watch the timescale.  The longer you do it, the more it might hurt you in the long run?

Guide her and love her. Support her and try to reason with her to not over do it.  I believe that is the best thing you can do for an ME suffering child or family member.  She will push herself because she want's to achieve her short and long term goals.  I think we Me sufferers can be very hard on ourselves and we continously need guidance from others close to us to slow down. 

Good Luck