Re: MRI is clear! But now what?

February 9, 2011

Hi Kirsten - I definitely hear you! Lucy was diagnosed 2 1/2 years ago and

the MRI at the time showed inflammation and her wrist was completely stiff.

She took Enbrel for two years and during that time had a lot of pain in

other joints. The rheumy didn't see any signs of active arthritis and so

after two MRIs we have decided that she is in remission and took her off

Enbrel. But, she still has a lot of pain. It's been terribly cold for

weeks here in Colorado and when those fronts are moving in she is

miserable. The rheumy has told me that she has rheumatism, that she has

inactive arthritis but still has pain. I don't know what else to do, so we

are trying to live with it.

I wish I had better advice to share with you, but I wanted you to know

that you are not the only one! Good luck with your visit with the rheumy.

Amy

On Wed, Feb 9, 2011 at 5:13 PM, kirsten <wilderhealing@...> wrote:

>

> Hello All,

> So good news is 's MRI of her knee showed nothing. No inflamation,

> no injury, no anything abnormal. Very glad except she's in a lot of pain.

> Now what? She's been in serious pain for 2 months now " all over " but mostly

> knees and back. If one of her worst spots shows no signs of arthritis,

> what's going on? Her pain level seems to vary dramatically through out the

> day. She seems perfectly fine and then moaning and not moving on the couch.

> She has no range of motion issues and can walk, run, skip, etc. until a few

> minutes later when she can't anymore. Labs are normal. Anyone have any

> ideas? We see her rheumy on Tuesday, but in the meantime I'm full of

> questions! I'd love ideas, opinions, anything!

> Thanks,

> Kirsten

> mom to , 6, spondy

>

February 9, 2011

Hi

I'm just a lurker on here--I joined hoping that you guys would be able to help

our family out if we ever needed anything after Adina was diagnosed with JRA

(14) last October. She had a lot of pain in her right wrist that spread to

basically her whole body. Most of the symptoms didn't match with JRA, but the

radiologist believed he saw inflammation in the MRS and our old rheumy didn't

listen to us. When we went to CHOPs to get a second opinion, Adina couldn't

barely walk from her bed to the bathroom and we were looking into a transfer

chair. At that point, we had been on Enbrel for 6 weeks with terrible allergic

reactions and no results.

When we got down to CHOP, they took one look at us and told us our diagnosis was

wrong, but they wanted to check the MRI just to make sure---turns out, the MRI

was read wrong. Apparently, the fact that she had so much pain to the touch and

the amount of pain fluctuation throughout the day indicated Reflex Neurovascular

Dystrophy. I'm not a doctor, but it seems like could fit in that

category, although most girls don't show signs of it until puberty. Its an

amplified pain syndrome caused bye either injury, illness or stress and doesn't

show up in labs. Sometimes, it is called childhood fibromyalgia, but they don't

like calling it that because kids DO have treatment. Some doctors will drug

them up with anti-depressants, but usually thats unnecessary. They have

prescribed Adina with heavy duty physical therapy and desensitization... it is

extremely painful for her, being that she'd already at a 10 on the pain scale

and we have to increase it to teach the body its not in pain and do a lot of

cardio. Apparently, any pain is being amplified because normally, if you step

on a tack, a message is sent up to your brain that its in pain and the nerves

send a message back down to constrict the blood vessels (to protect itself)

which causes more pain. Normally, a message would be sent saying everything's

A-ok but the reflex muscle doesn't work correctly and sends a message saying

your still in pain, and then the process repeats itself. Cardio, fortunately,

forces the blood to flow again so the process is finally over. So far, Adina's

treatment has been going well (for the last 2 weeks) and she can already walk

again. I hope feels better

-Kendal

>

> Hello All,

> So good news is 's MRI of her knee showed nothing. No inflamation,

no injury, no anything abnormal. Very glad except she's in a lot of pain. Now

what? She's been in serious pain for 2 months now " all over " but mostly knees

and back. If one of her worst spots shows no signs of arthritis, what's going

on? Her pain level seems to vary dramatically through out the day. She seems

perfectly fine and then moaning and not moving on the couch. She has no range

of motion issues and can walk, run, skip, etc. until a few minutes later when

she can't anymore. Labs are normal. Anyone have any ideas? We see her rheumy

on Tuesday, but in the meantime I'm full of questions! I'd love ideas,

opinions, anything!

> Thanks,

> Kirsten

> mom to , 6, spondy

>

February 10, 2011

Thanks for sharing your stories. Both sound AWFUL! Our poor kids and what they

go thru..... I have no idea what's going on with , but I'm going to

try thinking positive : ) I told her tonight to start telling her brain to get

with the program, stop telling her things hurt all the time and start telling

her that she is a healthy, pain-free little girl. She liked that! Then she

said " Brain, try to remember when I was 2 or 1. (diagnosed at 3) Remember how

to feel good! "

Thanks for the support and sharing,

Kirsten, mom to , 6, spondy