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

Posted , 10 users are following.

lucie12086
lucie12086

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

0 likes, 21 replies

21 Replies

  • lucie12086
    lucie12086

    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

  • jackie00198
    jackie00198 lucie12086

    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.

  • lucie12086
    lucie12086

    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

    • janet71271
      janet71271 lucie12086

      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

    • jackie00198
      jackie00198 lucie12086

      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.

  • lucie12086
    lucie12086

    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

  • alice63994
    alice63994 lucie12086

    Posted

    sounds like cfs, does she feel even more tired after exercise? Due to the pain it would also be worth looking into fibromylagia. also has she had a gastric emptying test and does she struggle with early satiety? and also, check her standing heart rate and blood pressure compared to sitting, i have PoTS which can cause fatigue, sickness etc and woule be worth looking into qswell. goof luck i hope you get to the bottom of this 
    • janet71271
      janet71271 alice63994

      Posted

      Hi Alice.

      Lucie has written above that her poorly girl has been diagnosed with gastroparesis today. Is also going to see a CFS specialist.

      Sorry not speaking for Lucie or anything . just saying .

      Take care Alice x

  • rosie34970
    rosie34970 lucie12086

    Posted

    Hi, just wanted to say that I get gastroparesis episodes with my cfs when it flares, in case you wanted to ask any questions. Sounds like you’ve done a great job of getting answers very quickly (probably doesn’t seem quick, but in the scheme of things!). I recommend Crystal Saltrelli (there’s a blog online) for advice about what to eat during gastroparesis episodes.

    Best wishes.

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