[DianeKem]

I am new to this group and this is my 1st post. I have RSD 23 plus years in my right hand arm shoulder... I was told that RSD doesn’t spread only you might have a mirror image of the pain. Really, No one understands RSD. Only folks that have RSD can really understand what we live through each minute of every day. When asked to explain your pain other than burning pain the rest I still after 23 years find it so hard to put the pain of RSD into words that folks Doctors can really understand. And for me yes it spread it has taken over my whole upper body; my concerns are in my chest lungs. If I tell my doctor this he might cut me lose and that’s what stops me from saying anything to him. Scared to speak to your doctor because you know that they really don’t want a patient they can’t cure. I am very worried this time, I tried to fix something and I hurt my left shoulder. That flared up the RSD For the past 3 weeks the pain is spreading to my whole left arm hand worse than ever. At times the RSD takes over my whole body, I find myself saying. It’s really sucks to be me right now, More times than I can count. I also have tinnitus ringing of the ear 2 incurable diseases isn’t life grand, Smile yes sarcasm. A must have, Laughter a must. I came here today because I have no one to talk to about this. I needed to get it out No one wants to spend time with you if all you do is talk about your pain. I hold it in to much for to many years, So thanks for reading my words today. I also would love to help anyone who needs a lift up on how to cope with RSD. I guess I am an old pro on living in RSD pain and its never ever silent from the sounds in my head, ring a ding ding. I am here if you need me. As well as I know you are there in case I need you. we are needy aren’t we. God Bless all who suffer. Pain is pain and when it’s your pain it matters.

[Russell]

Diane,
Welcome to the forum.
Wow! So sorry about how long you've lived with this monster. I've only been dealing with it 4 years now but can certainly relate.
After reading a lot of posts I feel lucky to have a neurologist who is very understanding and knowledgeable with RSD.
She told me where it will be spreading and she was right. I guess I lucked out. How hard it will hit is still a mystery though.
Why should anyone be afraid to tell a doctor anything? Aren't they here to help?
I'm sure I can't tell you anything that you haven't heard before but I wanted to at least welcome you to the family...

[DianeKem]

Hello Jimbo and thank you... I am so sorry you have RSD, It's not easy to live with seems as much as we try and kick the RSD out its like a bad house quest it never leaves. So you do what you can and push it aside. Hobbies are great, i must of done them all. i craft now cards scrapbook its easy light and have lots of machines to help me, even in the kitchen smile. I just want to say thanks i will write more tomorrow my finger isn't to well tonight and that is what i type with so i will get you later thanks again.. D

[Russell]

Diane,
I agree about finding hobbies to sidetrack our minds a bit. I'm either looking around in computer world, reading my kindle or playing my keys (which is my avatar pic).
Belonging to this forum is a life saver...

[Dr. Smith]

Originally Posted by DianeKem

When asked to explain your pain other than burning pain the rest I still after 23 years find it so hard to put the pain of RSD into words that folks Doctors can really understand.

A couple of suggestions that may help (if you're not already familiar with them):
Google: McGill Pain Questionnaire
Google: pain adjectives

If I tell my doctor this he might cut me lose and that’s what stops me from saying anything to him. Scared to speak to your doctor because you know that they really don’t want a patient they can’t cure.

Originally Posted by jimbo

Why should anyone be afraid to tell a doctor anything? Aren't they here to help?

This is the really complex issue. It's bad enough talking to a doctor about pain without worrying about being believed or that "it's only in your head" I don't think it's so much that doctors don't want a patient they can't cure, but many times they are afraid of us. This letter from a real doctor to patients with chronic illness may shed some light and provide some clues/advice on dealing with this:

http://www.medpagetoday.com/Blogs/21266?

I truly believe that most doctors do want to help us, but it is incubent on us to help them help us in any/every way we can, and communication is a big part of this, so more constructive/positive suggestions can be found here.

Google: talk doctor pain

Doc

[LIT LOVE]

My doc kind of gleefully pronounced he loved me as a patient because I'm one of his more complex cases. My sarcastic response was, "gee, thanks!" and then we both laughed.

The doc patient relationshp with RSD is more important than normal, because a high level of trust, communication, and respect is required by both parties for any hope of successful management of the disorder. We're not easy patients to treat medically and they often have to fight for us to get access to the right procedures and best medications.

If you can't open up to your doc, analyze why. Is it your issue? Or are they communicating to you that they're not thrilled with having to provide your care? And I'm going to repeat myself from another thread and sound like a pompous ninny with my own catch phrase, but--There are other fish (with medical degrees) in the sea!

[kathy d]

Hi Diane and Welcome,
I have to say first off that after 23 years of this mess you deserve a medal!!! The second thing I have to say is that if I had $10 for every medical "professional" who told me something about rsd that they believed was true I would be a really rich person haha. Most of the medical profession seem to pick up tidbits of information from different people they talk to so some of the things they say are incorrect...like rsd doesn't spread ha that is a good one. I've had this for over 6 years now and it spread from one area to entire body within four months.

Also, I think you might need to find another doctor if this one is not working for you. Talk to some people around you and see if they know a good neurologist. You need to be honest and comfortable with your doctor and if you can't be then you need to move on. The doctor should be comfortable enough to be able to be compassionate and helpful to you. As far as a complete healing...well tell the doctor he/she doesn't have to worry about that one yet because to date rsd is not cured as you well know. Yes we can always pray and hold on to hope that it will go away but remission and less pain are always an option too. It is a whole journey we go on with this mess. Hang in there and talk to us here whenever you need to. I understand everyone around you not wanting to deal with us. I get that all the time. I have shut down in talking to family about it as they just do not get it nor do they want to. I have two amazing friends that I share stuff with about rsd and they get it. Funny thing is they live many states away from me but I get more support from them then the people that live near me. Go figure. Take care of yourself...and vent here for sure.
kathy d

[Russell]

Kathy and Diane,
I just want to share this short story about my first orthopedic visit.
I completely snapped my left arm in two just above the elbow up in NYC area. Spent a week up there in a hospital were a rod was placed between my shoulder and elbow. Three days later I was sent home. WC sent me to see this doctor for follow up and by that time RSD had begun in my wrist and hand. At my first visit my hand was beginning to claw. (This is the funny part) At first he was not a believer of RSD but when he tried to straighten my fingers the pain was so intense that out of a reaction I used my right hand and shoved him up against the wall. (This is were you laugh!).
Since that episode he's read up on RSD and has become rather sympathetic to my pain.
Some doctors just don't understand RSD because they've never dealt with it.
I just thought you'd like the story...

[melpel]

Jimbo,
I noticed you are in WNC. We live in Arden. My daughter has been diagnosed with RSD since Jan of this year. Currently we are being treated by her orthopedist at BRBJ. Wondering if you have any recommendation of doctors here in our area. She had here 4th nerve block out at the ASC this past Monday. It would be great to be able to know someone else in the area. Thanks
:

[alt1268]

Diane,

Sorry for my delay in welcoming you to the group. I'm sure everyone as told you were glad to have you. I love your saying " It sucks to be me." Many days I have said that. and it just sums my life up in one short phrase. So Welcome. to the group.

Originally Posted by DianeKem

I am new to this group and this is my 1st post. I have RSD 23 plus years in my right hand arm shoulder... I was told that RSD doesn’t spread only you might have a mirror image of the pain. Really, No one understands RSD. Only folks that have RSD can really understand what we live through each minute of every day. When asked to explain your pain other than burning pain the rest I still after 23 years find it so hard to put the pain of RSD into words that folks Doctors can really understand. And for me yes it spread it has taken over my whole upper body; my concerns are in my chest lungs. If I tell my doctor this he might cut me lose and that’s what stops me from saying anything to him. Scared to speak to your doctor because you know that they really don’t want a patient they can’t cure. I am very worried this time, I tried to fix something and I hurt my left shoulder. That flared up the RSD For the past 3 weeks the pain is spreading to my whole left arm hand worse than ever. At times the RSD takes over my whole body, I find myself saying. It’s really sucks to be me right now, More times than I can count. I also have tinnitus ringing of the ear 2 incurable diseases isn’t life grand, Smile yes sarcasm. A must have, Laughter a must. I came here today because I have no one to talk to about this. I needed to get it out No one wants to spend time with you if all you do is talk about your pain. I hold it in to much for to many years, So thanks for reading my words today. I also would love to help anyone who needs a lift up on how to cope with RSD. I guess I am an old pro on living in RSD pain and its never ever silent from the sounds in my head, ring a ding ding. I am here if you need me. As well as I know you are there in case I need you. we are needy aren’t we. God Bless all who suffer. Pain is pain and when it’s your pain it matters.