HELP I'm new for CFS

Discussion in 'Fibromyalgia Main Forum' started by birdo, Jul 28, 2008.

  1. birdo

    birdo New Member

    Actually, it's my 15 year old son. He is on the higher end of the Autism Spectrum and I just can't get clear info. He is newly diagnosed with CFS.
    Do any of you suffer vision problems with this? He is totally unable to read. Everything close range is blurry. (He has an appt. with an ophthalmologist Thurs but I would like to go with some wisdom from you all). Also distant vision is much worse. He has always had incredible vision. This also explains his constant headaches.
    How much are you able to push yourself to do as far as activity? I just can't tell where he is in this. How far is too far? I know that's a toughie to answer but throwing it out anyway.
    Thanks and sorry this is so long. Trust me when I say it could be so much longer!!
  2. mbofov

    mbofov Active Member

    I have CFS only (no FM). I don't have vision problems so can't help you there.

    Re how far I can push myself? Basically, I can no longer push myself, or else I crash and end up in bed with exhaustion. So I do what I feel I can do comfortably and if I start to feel like I am pushing myself, then that's a warning sign to me that I'd better stop whatever I'm doing and just rest. My daily limit seems to be about 3 hours of light activity - e.g., running errands, light house cleaning, but nothing strenuous.

    Of course I had to learn this the hard way after repeated crashing. So your son will just have to see what he can tolerate in the way of activity before he crashes.

    Does he have post-exertional malaise? this is severe fatigue which hits after overdoing it, and can take 2-4 days of doing absolutely nothing in order to recover. It's the hallmark of CFS.

    It would seem the headaches and vision problems are related, and they are not necessarily CFS symptoms. Someone else suggested lyme, and it would be good to get checked for that. Hopefully the ophthalmologist can help here.

    Wish there were easy answers --

  3. birdo

    birdo New Member

    A reply to all three of you, You are awesome! Absolutely, without a doubt awesome! You have helped me see so much. YES! The muscles around the eyes are weak. That makes SO much sense!!! That is why it happened so quickly. He didn't even know his distance vision was bad until I figured it out. He said he just doesn't focus on anything anyway so how is he to know? (this is a big part of the autism talking here).
    He is so new to all of this. This came on him like a mac truck. Flat on his back. So this is just the beginning and I haven't seen him with energy to do much of anything so no formed patterns are known yet. But you are so helping me prepare.
    We have gone to physical ther. which really helped and acupuncture which didn't.
    How on earth am I to do schooling with him? That is a question!! I homeschool him and he is a slow learner as it is! I just realized this!! YIKES!!!!! I've been so wrapped up in making it through each day. More help please???
  4. birdo

    birdo New Member

    I forgot to ask, what is a LLMD??
  5. birdo

    birdo New Member

    You explained it! Lyme doc. Paul has been given the western blot and it was neg. for Lyme.
    Sorry about the excessive post.
  6. scrappytngirl

    scrappytngirl New Member

    Birdo - Welcome! Two ideas - I also have a son (10) who is on the high end of the Autism Spectrum with ADD, Turettes and OCD. He has a lot of vision problems and headaches. Eye doc says that his eyes do not work together - has to use special glasses to try and correct issue - the glasses are hard to see out of (make your eyes work very hard) and cause more headaches!

    I have FM/CFIDS and my vision changes all the time. Some days I can see clearly with contacts/glasses, and other days I have a hard time focusing.

    As you know Autism can make it very hard to figure out what the problem is. Hope my thoughts help - I look forward to your posts. Scrappy
  7. Lichu3

    Lichu3 New Member

    Google for pediatricnetwork dot org

    This is a non-profit which has many years experience working with kids and their families. They have a messageboard and info as well.
  8. birdo

    birdo New Member

    The search feature is wonderful. And the link to the ped. network is exactly what I was looking for.
    Thanks so much for the help. If anyone is reading this, what do you do when you have tremors? He has them every now and then. I did a search on tremors but didn't find too much.
  9. JoFMS

    JoFMS New Member

    Hi Birdo,
    I have fibro and CFS and I believe that it's best not to exercise every day but to have a day of in between - stretches are ok but nothing more. This is what I've found. I've recently been exercising every day and think I may have somewhat crashed slightly - now I have gone back to every other day but stretches every day so my body isn't so stiff and tired.

    Have you looked into mercury, does your son have amalgam silver fillings? There seems to be lots of connections with CFS, autism and mercury poisoning. I am currently following Dr Cutler's protocol for low dose frequent oral chelation and he's helped a lot of people with CFS and autism.

    My vision does go blurry sometimes in that I can't see the pages. My optometrist says theres nothing wrong except for tired eyes in that my body is so tired and exhausted that the eye muscles dont have the energy to work their best at times.