Quote:
Originally Posted by St George 2013
I have SFN but never had the spinal tap so I can't give you an opinion on that. I had to chase my own dx and finally got it with a skin punch biopsy. I guess if that had not been positive I might have done the spinal tap.
I've had this going on 4 years.....I still can't get the 'pacing myself' together. When I feel halfway decent I want to do so much around the house....forget about going out.....I'm home 99% of the time. Frustrating and depressing that my life has turned out like this. I'm only 54 and without the help of my grown children and grandkids I have no idea where I would be.
I too get upset seeing what other people are able to do. I try not to but it's really hard sometimes. I try to pull myself up by my bootstraps but it's not always easy to do.
Can I ask how old your son is ? God love your heart, I don't have all the symptoms you have but I know you are a strong woman trying to raise that son of yours !
But......we do wake up everyday and get to see the sun shining in. That has to mean something 
We've got to support each other through the good and the bad.
We're here.....such good people on here always ready to reach out with the right words to help me.
Keep us posted on your results of the muscle biopsy.
Debi from Georgia |
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