parent of cfs sufferer

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My 14 year old daughter was diagnosed with cfs in December last year.

Lately she is having more frequent episodes of her legs not working properly.

She describes it as her brain and legs not being connected.

Any suggestions

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6 Replies

  • Posted

    I can relate so much

    However I'm not 14 but 64. I do have several other issues but I think cfs is the most debilitating. I'm taking adrenal complex which helps a little and a good antidepressant My heart goes out to her??

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  • Posted

    Hi Lesley,

    What she is describing could be some sort of balance problem along with brain fog- symptoms that are often associated with CFS. It's really hard to describe.

    Both my daughter and I have CFS. My symptoms started when I was in my early 30s, while her symptoms started at age 15. The good news is that the younger you are diagnosed, the more likely you are to recover or at least make a partial recovery. My daughter is doing bettter now and is actually able to attend college. She still tires easily and her symtoms flare up when she over does things. Hope you are getting your daughter some treatment. Pacing yoursleft and getting the right balance of light exercise along with rest are both important. Good luck to you and your daughter. KPD

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  • Posted

    You should look into a condition called May-Thurner Syndrome (Left Iliac Vein Compression). It's been causing me CFS for the past 25 years and more recently leg problems. It can also definitely affect the brain and legs. I had an Interventional Radiologist discover this condition recently and had a stent placed in my Left Iliac Vein. Almost overnight the Chronic Fatigue and leg pains were gone. I've talked to other people with May-Thurner Syndrome and they have the same problems yet very few doctors seem to understand this condition and the problems it can cause. If your daughter does have this condition, it's possible a simple stenting procedure could give great relief from her problems.

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  • Posted

    I am also 14, i have CFS and i can relate to the exact same feeling and for me it's constant for up to a month and then goes away and comes back for a month. My advice is that she keeps moving. Everyone said this to me and i hated them for it because all you can do and feel like doing is resting and keeping still. So i didn't move, i sat on the sofa and moved only when i needed to. But i started getting symptoms of muscle weakness and i couldn't even crawl across the room i was using the furniture to pull myself around the house. It's important to find the balance between straining yourself and resting the whole time even if she's just doing light stretches or some physio. Definetetly talk to your doctor and i hope this helps.

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