Really need advice please. Poorly child. Is this CFS???

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Ok so the symptoms for the past 4 months have been this...

Continuously tired despite always seeming to be relatively inactive.  Would go to school all week and sleep or rest all weekend.  Now can't even do a full day.  Lost social life, boyfriend etc because she has no energy to be sociable.

Has continuous aches and pains, tingling in hands and feet on occasions and stomach pains or lower back pain.

Periods of vomitting, maybe one or two days every few weeks.

Headaches and a swimming head type feeling.

Significant weight loss of 2 stone despite eating normally apart from the sicky episodes.

Nausea.

So, she has had endoscopy, colonscopy, blood tests.....everything is normal and fine apart from one poo test which showed slightly raised levels of inflammation but colonoscopy showed everything as fine.  Awaiting MRI in a few days.

My fear, although it sounds strange is that they will find nothing because with nothing to go by we have nothing to treat yet she is clearly very unwell.

If MRI is normal, where do we go from here?  who should we be asking to see?  We need a diagnosis particularly for the examining board fo9r her GCSES if any allo9wances are to be made for her fatigue, attendance etc.

Huge thanks

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  • Posted

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    • Posted

      Exercise is not the best treatment !! And could even be very detrimental for this young lady.

      Lucie there are lots of posts on here from people who long experience having CFS/ME. Please have a read .

      Have all the tests been carried out by your GP ? If so you need to asking for a second opinion. Was she unwell before all these symptoms started? Any infections or anything ? CFS /ME is usually predisposed by an infection/ infections often viral , but can also come on quickly with no obvious other illness or infection etc.

      I would certainly request a second opinion . take care and let us know how you get on x

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    • Posted

      Ben1994 has made 902 posts since he joined here 20 days ago. It doesn't seem that a lot of thought goes into them.

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    • Posted

      Sounds like a troll. I have read some of his other posts and they are rubbish too. Must have too much time on his hands !
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    • Posted

      He belongs to 315 different groups on this site. Must be an expert on everything. Wonder if 1994 is his birthday yr ?
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  • Posted

    Mri is of brain and body but they want her to do a hydrogen breath test as well. Bloods were fupload blood count, vitamin deficiencies etc you name it she's had it. I am almost certain it is cfs. I don't see what else it can be but fear the gastro consultant will fob us off now that he's found nothing

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  • Posted

    Based on the symptoms you describe, you should definitely look into ME/CFS. GP's tend to be pretty ignorant of this illness.  Is there a ME/CFS specialist or clinic in your area? If you live in the U.S., I can give you some names of top specialists. Also, you can get a lot of information by Googling ME/CFS. Go to the "solve me/cfs initiative" website. It used to be thought that ME/CFS could only be diagnosed after 6 months, but I was diagnosed after having symptoms for only 3 months.

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  • Posted

    I am UK but have emailed a dr tonight in the hope ofor some help. I just can't see what else it could be. Is sickness or feeling sick a symptom? What about weightloss? ? She's lost so much and continues to do so despite eating relatively ok

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    • Posted

      Yes Lucie feeling sick is a common symptom for many of us. I constantly feel sick. One thought considering the weight loss too . gastroparesis which is delayed emptying of the stomach. Other symptoms are feeling full quickly, heartburn, reflux, bloating. Blood sugar disturbance. I know a few people with CFS/ME who also have this problem.

      I do hope you can get some answers soon. You are obviously and naturally very concerned . as Jackie has said most GPs are still clueless about CFS/ME. Even a decent and appropriate name for it can't be reached ! Stand your ground. Take care and good luck with the Dr you have emailed x

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    • Posted

      Yes, feeling sick and weight loss are symptoms. I've been feeling sick for the past few weeks. Also, when I first got ill, I lost a lot of weight. I do hope you can find a knowledgeable doctor. They are hard to find, but they do exist.

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  • Posted

    So she's been diagnosed with gastroparesis!! Still seeing cfs consultant incase a secondary thing. Consultant said most likely post viral (only got to have brief chat in hospital) so am guessing it goes away and gets better? Although can't find info of that on Internet

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