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Hi my daughter has been unwell for over a year constant bad throat headaches feeling lethargic all the time sometimes sleeping most of day no energy been to paedtrician had normal tests MRI scan showed a small growth but said this is not causing the symptoms she has blood tests revealed subclinical hypothyroidism but very time we go back results go back to normal she has episodes of where her vision breifly goes making her light headed and pale ( well she is pale all the time ) she has also started with eye twitching she was fit and healthy before all this never missed school now after 1 or maybe just an afternoon in school she is exhausted. I have researched her symptoms and ME keeps popping up but this is never mentioned with any of the 3 specialist she now sees any advice and what you think will be very helpful
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I am rather cross it has taken me so long to find this discussion but none the less hope some of my contribution will help some of the young people. I am a mother who has experienced most of what you all have too and I am happy to share my experience. At its worst my daughter could not walk or talk.
i have no idea if it will work for you but ITS DEFINITELY WORTH PURSUEING FOR YOUR LOVED ONE. my daughter was off school for 7 months and even now she is only able to attend for a max of 2 hrs per day a significant ipmrovement from not being able to attend at all. she is 16 and has managed to sit 9 GCSEs this june. i found spending tme with her myseld and caring for her myself made a huge difference in the speed of recovery. She has gotten much better.
The spark is back as well as the positivity. She has to pace herself but she is motivated to leave the house and enjoy life. We changed our diet. Do message me. I am happy to share my experience and hope your sons and daughter get well too. Most importantly NEVER GIVE UP! You must keep fighting and knocking on doors.
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If you are dealing with someone else, I can give you some general advice. They need your help, support,understanding and above all your patience. Don't tell them they need to get up and do things - they already know that. You are just making the situation worse. They are tired, miserable, ratty and impatient. When they snap at you, it's really irritation with themselves so try to understand and don't react. They need you to be calm and strong. To do this you need to remain calm, slightly distanced and above all don't you start getting flustered, stressed, angry and tired. That way, there will be two patients. Give your self distance, get on with your own life, take time off, away from the patient, find someone you can talk to, breathe deeply and laugh.
All the best ! Bye xx
As to your other questions, I am not qualified to give a scientific answer. I have CFS. I don't know whether it's possible to have both but going from my own experiences, I wonder if it matters. The symptoms are very similar with a huge overlap. Some recover, some don't. As you have suffered for some time, it seems that you, like me are one of those who don't get better. Remember this is an unqualified opinion. I know that painkillers are an option. I use them, but carefully as there is the danger of addiction. Things do get worse from time to time. The bad sessions can last from a few hours to over a year - no way to know in advance - just live through it.
For me, the most important part of your post is your attitude. You have accepted your condition and you live life the best you can. Please keep this positive attitude because it is the most important treatment you can have. Just don't expect too much from yourself. If you haven't got someone to share with I suggest you look around for some type of self help support group. Social interaction is also vital.
I hope this helps. Good Luck.
so much worse if you fight it, waitimg for possible diagnosis rather than rest up, you really have to
self diagnose reading as much
as possible on the subject, I had my tonsils removed at the age of 31 and feel as though I picked
up the virus in or after leaving hospital (40yrs ago) at that time nobody had a clue as to what this
condition was, I had to take a few months of work with no pay, I changed my job
from working on building sites heavy labour to a self employed computer /machine operator
which saved me financially,
the best way to describe this condition is you are like a battery, which when it goes flat takes
time to re-charge,
back home if I pushed myself to hard it would take three months to recover,as I re-ajusted lifestyle
I could recover in a few days, I am suprised over the yrs to find medical workers with this condition
some days you feel good and push yourself hard, and the fatigue comes back with a vengaence
so a VERY careful excercise plan to keep mentally sound, and I feel I am back to 80% of an average
lifestyle, the summer is much harder to cope with, and holidays taking our young children away
really takes it out of you, on getting to train stations airports I tipped people to carry luggage
yet on trying a winter break taking the kids on a ski holiday wrapped up in the very cold mountain air
made me feel a hundred times better, I do not know why as mountain air in the alps can be very
poluted with vehicle fumes, I am to old to do this now and find cycling several miles a day on flat
roads quite easy, also a steady build up on a cross-trainer the best exercise, please keep off
any running type of program
wishing you all a full recovery
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