Hi Allie Girl..
thanks for the links. I hope your day is less painful. How is the arm coming along? I am praying for you.
Do you keep up with school from home? Or are you homeschooling opposed to public school? I know you must miss all the social activities with your friends. You are too sweet to have this awful thing around you.

I am asking about school because I am planning to be a special ed. teacher...and if I every come across a young person with the same concerns as you I will know how to adjust schooling to make it the best possible. Can you go for a portion of the day?

take care.
huggles jo

Hi there,
Many thanks for your reply. My arm is much better now, it still hurts a bit but not as much as it used to do.
I used to be able to go to school but as the pain got worse I couldn't go. I tried to go back to school for 2 hours a day in September but I couldn't cope with the pain or concentrate properly, plus I was out of school for hospital appointments etc. My schools currently sending me some work home, until I start online tuition this year.
My moms put in for an SEN statment (I am not sure what they are called in America) but it basically tells the school that even though I can't go to school, I still need some form of education.
I will try and get my mom to reply to you too.
Thanx again
Love
Alison

Here in the states if you are home bound someone from the school district will actually come to your home. Perhaps that is with that paper that you are speaking of that your mom has started for you.
I did an internship at our Children's Hospital where we have a school room. The school is one that kids with psychiatric disorders can go and get some school education and get help in strategy for how to cope with regular school. Other kids in the hospital get bedside school work. So the teachers there were three made rounds each week and visited all the kids that were on their roster. The criteria was a three or more day hospital stay. I got to see babies up to third graders on my watch. Since I was learning more about early childhood education at that time. I did a lot of work with kids on the cancer ward. They had to go through so much. I would communicate with their school and find out what they were learning and try to get the books that they were learning out of. The kids kind of liked the school part of their day because it was something normal for them. Not someone coming and poking them or giving them some nasty test. They liked it when we came in. The kids were so brave. I did a lot of work with the parents while I was there and got me interested in if I could help parents to understand their kids better or have a better way of working with their child than I would make a bigger difference in the child's life by changing the course of their lives. So I than went into Human Services where I got my BA degree. I have done mostly case management work with people but always have focused on their kids. While at the hospital the hardest part for me was going the next day and finding someone didn't make it through the night. It was so hard. I learned though that the time that they had was of value and that I gave them something that no one else was giving them.

But for you sweetie, I bet having school come to your home would help some. I would still try to figure out one part of the day that is a fun one like art or something that you like and go for even one hour, when you feel up to it. Maybe not now but work toward it as a goal of your pain management.

There is Podcasting now that your mom might want to explore. You can be a part of your class through the use of an IPOD. You can hear all the kids and be a part of the class too. Ask at your school if there is something that could happen in that arena. That way you won't lose touch with your BFF.

HUgs. jo

i would say the spinal cord stim is a great option when everything less invasive has failed. i have 2 one upper and one lower body, the upper body one had to be revised when the cauterization for the second one shorted out the battery (this only happens with old units). despite the revision the stims are both great and have had an amazing impact on my pain. i still have days when i struggle to do much of anything, but the stims certainly have limited those

Anyone know of a doc that actually knows what RSD is & knows how to treat it in Western WA. state???

I'm really looking for a doc to do a SNB. I saw one & instead he did a Epidural & has made my mild RSD spread badly!!
My GP nor my podiatrist don't know of any of doc that know RSD & do SNBs I really need to get something done to help get it back in control as I had had for the last 22 years!!!

Vanityfare - Just wanted to shout out and say welcome from another Washington State RSD person. I reside in Kent Wa, how about you? I think you will find very good info here and everyone is so friendly and gives good advice. I have been diagnosed with RSD for about 2 years now and seems like it has stirred up problems in all areas of my body since then. I have been looking for a support group for RSD around - but havent come across any. Right now my RSD seems somewhat undercontrol -knock on wood - but the knee it has effected is acting up due to the knee replacement - so walking on egg shells, so to speak! I see mainly a pain management dr for the RSD. I also have MS and AS and see a neurologist and rheumatologist. If you are nearby it would be good to meet sometime! Take care.

Hey Lindkay,
I just saw your post!! I didn't get any notice that you had replied to my post on here.

I hope you are doing OK since this post!! I am really bummed we didn't connect before this!!! Prayers to you!!!

I now have an AWESOME Dr. Frank Li, in Renton. Just saw him today....my RSD is spreading!! Anyway I am working on starting a support group here in WESTERN WA. RSD/CRPS Support Group. I guess I can't post my e-mail address on here so contact me through face book Sam Goulet.

I hope I hear from you I am between Auburn & FedWay. So we are very close!! I know of 10 folks in Western WA with RSD & a few possibles RSDers. I hope we can get our first Support Group meeting by the end of this month. Transportation issues is the main problem.
HUGZZZ Sam

Wow, all these people with RSD in Western WA and this is supposed to be such a rare condition? I also live in the Kent, WA area. I belong to a local pain forum and have found 2 others on it with RSD. I think it's critical to somehow get a group together locally, even if it's internet based, as there is so little cohesiveness as to how this condition is being treated here in the Seattle area. My neurologist even abandoned me when I was hospitalized late last year as she just didn't believe that this causes blood pressure issues, edema, weird rashes, etc. My PCP said he believes my pain, but thinks RSD is basically a psychological condition (even if Pain Management specialists) say it's it's neurological and the PCP had no other reason for the discoloration, edema and nerve damage, aagh! I called the U of W and they said not to make an appointment as they had no protocol for treating RSD and I would be wasting my time. I don't need a pain doc. I'm needing to find someone who will be up to speed and aware of all the OTHER things that can go wrong (and have) so I don't end up with a(nother) crisis. If we want to try to get an RSD group together in some fashion by contacting one another, I can be reached through the WA state cannacare.org forum (by PM'ing me where I post as "RSD patient" in an effort to find more of us out there). I'd love to try to get a lot of us seeing the same doctors so somehow there can be strength in #'s and improvement in our care (and to avoid treatments that are not in our best interest). My "pie in the sky" desire would be to somehow get some press for this disease so we can get appropriate protocols. It's almost impossible for us to find one another other aside from the internet. I do hope people will try to contact one another, this is a rare chance, I think.

Corinne89
P.S. I was surprised that Dr. Li was mentioned, as his office said they did not take RSD patients some months ago. Maybe I will try going "stealth."

Easterm Washington; live near Spokane. RSD appeared in '94 after very tight cast on arm repaired after horse accident. Best PT guy ever helped me regain range of motion. My Rheumatologist has taken care of me ever since. He is good about trying any Rx that may help. Too bad, I'm allergic to most everything! Lyrica worked wonders until puffy feet and legs started. Severall immediately caused swollen hands & face.

I get extreme pain in foot that I had fusion on 2 yrs ago, sometimes swelling and gray, hot or cold. Am told repeatedly that nothing is wrong, or "arthritis." Yet Scan lit up like Xmas tree and tech asked if I had ever had gout. I wonder if I always get complete answer!
I have to have knee replaced this spring, and am worried that major flare will be triggered.
Glad to find a place to rant.

Hey,

I have been out of it & just remembered this site tonight.
Corinne, I hope you are doing well. Had one person show up for a support meeting & she actually was wanting meds & money from me. I'm not thinking this is something I want to deal with. Any ideas??? I'm not a Dr. & don't give out meds to anyone!!

I am still seeing Dr. Li & he has helped me a lot! Maybe he changed his mind or someone had some wrong info. on him. Just saw him last week & talked about SNB in my neck if my hands don't settle down , which thankfully they are!!!

I thought I would stop by & say hey.
Sam