Hi Debi, yes I'm exactly the same with the pacing thing. I just want to do everything round the house I've been needing to do! Then you can suffer can't you, it's frustrating.
My son is only 4 and full of beans. Luckily his father is very involved and we have a very good friendly relationship despite being apart. I'm lucky in that respect as I can rest and take care of me without worrying about anyone when he is having fun with his dad. I really do try look on the bright side for the most part. I think chronic pain and exhaustion can make you feel so down that it's a fight to stay positive. I always always stay bright and cheery for my son as my worst fear is dragging him down.

I feel less alone knowing I'm not the only one not going out really living a normal life but it's sad to hear that too Debi. I'm glad you have the support of family. It can be really difficult to keep going sometimes and having others need you around can be the thing to keep on going.

I've had the skin biopsy, sfn is without question. I wondered whether the Spinal tap might rule possible causes out. Im being investigated for EDS but that's not certain yet.

Thanks again for your lovely message Debi :-) x