[gitte74]

My son is finally sent to another hospital because of RSD in the leg and back pain. I dont now when, mayby in 1-2 months from now, so waiting again. We now have the psyciatrist word that his back pain is not in his head. But now im still affraid that the next doctor will say that "i havent seen it before in the back so its not RSD, we cant help you" This is little denmark we are living in and i dont now how common it is. Its not common when i read about it, but i now that others suffers with the pain.

So i ask you all, do you have problems in the back and do you have other symptoms than pain and sensibility. I have to have some facts with me...

Thank you all
Gitte - Olivers mum

[SandyS]

Hi Gitte,

I am sorry to hear Oliver's RSD is spreading, I can't answer your question for you, but I know that many people have had the RSD spread to their backs. My 16 year old daughter has RSD and it has spread to other parts of her body. It began in her left ankle and spread through her leg and to both her arms and hands. She has had Ketamine infusions and they have taken the pain down to a tollerable level. His pain is not in his head, believe him. There will be other posts that will help you here. My prayers are with you.

Love Sandy

Originally Posted by gitte74

My son is finally sent to another hospital because of RSD in the leg and back pain. I dont now when, mayby in 1-2 months from now, so waiting again. We now have the psyciatrist word that his back pain is not in his head. But now im still affraid that the next doctor will say that "i havent seen it before in the back so its not RSD, we cant help you" This is little denmark we are living in and i dont now how common it is. Its not common when i read about it, but i now that others suffers with the pain.

So i ask you all, do you have problems in the back and do you have other symptoms than pain and sensibility. I have to have some facts with me...

Thank you all
Gitte - Olivers mum

[dreambeliever128]

My Physical Therapist diagnosed mine in my back. I knew I had full body pain but it didn't strick me that it was in my back at the time. He wrote it in the report he wrote a few years back and sent it to my PCP to make him aware of it.

I've had RSD since around 98 along with Fibro. I thought it was just the Osteoarthritis in my back up until Paul diagnosed the RSD in the back.

Ada

[AintSoBad]

Originally Posted by gitte74

My son is finally sent to another hospital because of RSD in the leg and back pain. I dont now when, mayby in 1-2 months from now, so waiting again. We now have the psyciatrist word that his back pain is not in his head. But now im still affraid that the next doctor will say that "i havent seen it before in the back so its not RSD, we cant help you" This is little denmark we are living in and i dont now how common it is. Its not common when i read about it, but i now that others suffers with the pain.

So i ask you all, do you have problems in the back and do you have other symptoms than pain and sensibility. I have to have some facts with me...

Thank you all
Gitte - Olivers mum

Gitte,

So, you son is "sent to another hospital, because of RSD in the leg and back pain."
Therefore, you have a dx of RSD. Sad, but true.
From now on,
you must insist to any doctor, that "Perhaps they're not qualified, to diagnose RSD"!?
Then, leave politely.

You will perchance come upon doctors who may be, or who may NOT be knowledgeable enough to DX RSD!
Don't let a Fool, get you Down!
Walk away!
If they're not educated enough, IMHO, they don't deserve to be paid! (That makes them learn!) As they should! I can't tell you how many doctors, perhaps 30, that I've simply walked out on, when here in Pennsylvania they were guaranteed an unlimited payment. I told them, "NO" I'm not signing your little paper, because you've got NoCLUE What we're talking about here! And, I walked out.
More than a hundred doctors with no clue, welcome to the 80's!

Here's my suggestion:
Call and ask if the doctor is familiar with, and has treated folks with RSD?
Ask for a number. How many folks does he treat regularly with RSD?
(What? Do you think a Doctor is a Saint? NO WAY! He's just a guy, or woman, who had
the money to go to med school!)
And, some of our wonderful Neuro's, are super naive',
They went to med school, and to be a Neuro, so they didn't hafto get "dirty".
A good reason not to trust Neuro's!

But, Keep going to these doctors!
It's better to have a little doubt. Than to be pushed through a "system".

So, you're doing the right thing, you're thinking the right thing!

Best of wishes for Oliver, and you, Gitte!


Pete

[gitte74]

Thank You for answering

Oliver got the RSD diagnose in the leg almost a year ago, so far so god. His back pain started 4 months later, after PT. The hospital we are going to is one of the main hospitals in denmark, but then again, this is denmark, we are not big on the map and i havent been able to find any danish littarture descriping RSD back spread, thats why i am a little worried about maybe getting the same message. I was told they are one of the best in denmark, but i read that they have only been treating 10 kids in 5 years i hope thats a wrong number...

Gitte

[AintSoBad]

Relax Gitta,

They'll do their best for you, I'm sure...

Let's not go in there looking for the worst! Some trust is required! And, appreciated!
So, take it as it goes,
and just don't let them push you around, which,
I understand the fear of,
but, It doesn't seem that's what they're gonna do!

Prayers are with you, and Oliver!
Faith, that you'll both do well....

Pete

[loretta]

Originally Posted by gitte74

My son is finally sent to another hospital because of RSD in the leg and back pain. I dont now when, mayby in 1-2 months from now, so waiting again. We now have the psyciatrist word that his back pain is not in his head. But now im still affraid that the next doctor will say that "i havent seen it before in the back so its not RSD, we cant help you" This is little denmark we are living in and i dont now how common it is. Its not common when i read about it, but i now that others suffers with the pain.

So i ask you all, do you have problems in the back and do you have other symptoms than pain and sensibility. I have to have some facts with me...

Thank you all
Gitte - Olivers mum

Hi Gitte & Oliver, I have RSD in my lower back and neck area. If I life too much or try to do too much housework, I get bad lower back pain. Also nect pain, have ruptured disk in nect and have headaches. The lower back pain is real. I have full body RSD 15 years now. Massage therapy helps me, jucuzzi is helpful, and even a heating pad across my back. I try to not overdo and get along OK, I also do stretching exercises, which is very good for muscles. There is a cylinder about 5 ft long and 6-8 inches in diameter- I lay across that and roll for side to side or up and down the spine, Physical Therapy gave it to me, It's made of styrofoam. should be able to buy one. You can also buy bean bags to put in microwave that feel good across the lower back and neck. Take care, loretta

[gitte74]

Originally Posted by AintSoBad

Relax Gitta,

They'll do their best for you, I'm sure...

Let's not go in there looking for the worst! Some trust is required! And, appreciated!
So, take it as it goes,
and just don't let them push you around, which,
I understand the fear of,
but, It doesn't seem that's what they're gonna do!

Prayers are with you, and Oliver!
Faith, that you'll both do well....

Pete

Hi pete

Thank you for your prayers. I would like so much to relax, but when your son havent been able to join school for almost a year and seeing how much it affects him, I actually starts to get a bit desperate...I cant help it. They pain has been "treated" with a psyciatrist not with any affect as you might guess. I think that the hospital we are going to is tha last opption i denmark, that also makes you even more desperate. I know they will do their best, i am a nurse myself, but i also know that the knowlgde of this disease is very limited in denmark. I can hear that you have other options than we do, but i havent lost my hope yet, i cant...

Gitte

[CZZ74]

Hi, Gitta,

I am so sorry to hear your sons RSD has spread , and that the area is his back. when rsd spreads to the spine it is close to unbearable.

I have full body, however I can say unequivocally that my back flares are some of the most devastating.

I wanted to add in year 6 an MRI was finally taken of the correct area of my spine, the thoracic area.

this is significant as Dr. S had said that I had a secondary injury which was causing relentless flares in my spine. Constant burning so severe i could not ever express it with words.

my pain management doctors idea was to begin epidurals addressing my secondary problem- which were causing the repetitive flares in my back which included lesions.
( Lesions occur as your body is screaming, it can not take any More pain in a given area, that by the way is my explanation of lesions. And there are no other "good "" explanations out there)

The epidurals for my disc problems did reduce the number of flare up on and in my back for almost 6 months. Very significant, so much better.

Unfortunately now, my body's reaction to the catheter , the invasion of it- is so severe i can no longer have the epidurals.

I mention this in case your son has an underlying problem which is triggering more flares in his leg and or back. its something to check out.

I feel my program might have been more successful if started earlier. My rsd is so advanced i have cellular changes in my spine so it started a bit late for me. Hope this helps, CZ

[snowboarder13]

That's actually not that uncommon really. More and more people with RSD are experiancing the spreading of it throughout their body, whether in their arms or legs or anywhere else. RSD can spread, that we know for sure, its just a matter of where it spreads. I'm sorry to hear that your son is experiancing pain in his back and I hope you sort all this out soon,
-jeremy-