Chronic Fatigue Syndrome (CFS), anyone else?

[Farmwife]

Well we're back from the rehabilitation hospital.
Thankfully it was less then a 2 week stay in the program.
Grace did great and was such a trooper even when the therapist were pushing her little body to get stronger.

Unfortunately it didn't really help the way we wanted it to but they did teach a bunch of coping mechanisms to help her deal with the pain.

The pain doc added a new dx to her ever growing list...........

Chronic Fatigue Syndrome
1Does anyone else deal with this?
2does it come and go?
3 What helps it?
4 Do you take meds to help?

Other than that, her abdominal pain is still there but appetite seems to have even out.
We met with the GI nurse practitioner tomorrow. I don't think anything well change but we'll see.

 

[pdx]

I'm not surprised to hear that Grace was a trooper in her program! It's too bad that it wasn't quite what you wanted, but hopefully some of what she learned will be helpful. Sorry to hear about the chronic fatigue syndrome diagnosis.

Glad that you're back home!

 

[Maya142]

Way to go Grace!!

Why did they keep her for just two weeks Farmwife? I thought it was a 6 week program?

The program M did was three weeks. She learned a lot. Her sleep is much better and she stays more active, despite the pain and fatigue.

We have no experience with Chronic Fatigue Syndrome but did meet one kiddo with that diagnosis at the program. I don't know what meds (if any) she was on.

 

[xmdmom]

I would ask the doctor how s/he made this diagnosis. It seems like a hard diagnosis to make when Grace has other medical conditions that could be causing fatigue and is also on a medication that could cause fatigue.

Does she have cognitive difficulties? That is part of the diagnosis.

 

[Farmwife]

Trust me 2 weeks was long enough to be away from home.:ack: At least the house was still standing.

Everyone was impressed with how much strength she really had when it came down to it. I think they thought they would have to go way slower with therapy then they did.

Her big issue is her joints being to bendy.
She's putting to much stress on them because there's no natural stop in the joint. You put that together with aggressive JIA and you have a nightmare to treat.
She learned allot about protecting her joints.
Grace's reflexes are also a mess because of years of pain so I was taught to do some therapy on her legs that should over time help to correct that.

The doc doesn't believe Grace will ever be pain free and has already come up with alternating pain plans
to help her as she grows.

I'm still glad we went even if it didn't solve her pain issue that much.

 

[Farmwife]

Xmdmom,
Yes she does. Her teacher had always said that Grace is so bright..... except when she's not. She'll go through times when she just can't get what we know she knows.... ya know. Lol
But I agree, there is allot in her mix right now and at the end of the day it's just a dx and not my kid.

 

[Maya142]

Is she continuing with PT? That should help with hypermobility - keeping her joints strong.

Unfortunately, for many kids with JIA, particularly those who already have joint damage, pain free is just not realistic . That's the point of the program - to teach them to live well despite the pain.

We have found that with PT, M's muscles have become much stronger and that does help with the joint pain. She does still do the exercises she was given at the pain program daily.