Hi From Washington State
 

Hi all, My name is Jo and I am just dropping by to find some support for RSD. I have had the problem for about three years now and it really effects everything that I do. I keep active and try not to let it get me down but sometimes it is too much. I am on some doses of medication and carry a full time job. That can be tricky managing the doses and keeping up with the things I need to do at work.
Well, this looks like a pretty friendly place and active with responses. I have already peaked in the RSD section.

Hi there,
Welcome to Neurotalk, Jo, I am so sorry about everything that you are going through ((hugs))

Please let me introduce myself:

My name is Alison, I am 12 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March, I was diagnosed with RSD 4 months later. I then had a guanethidine nerve block which caused me to lose my balance. I was later prescribed Amitriptyline which caused a nasty side effect of "blurred vision", this resulted in a knock to my right arm, I was diagnosed with RSD 2 weeks later. The RSD in my arm as been in remission, but I knocked my arm 3 weeks ago and it caused my RSD to flair up again:mad:

Do you have Physiotherapy? I see a physiotherapist once a week and I find it really stressful, I don't really like my Physiotherapist, she is not very understanding.

You sound like such a nice person and I am sorry about everything you are going through, I am so proud that you are still able to go to work, I can't go to school due to pain and mobility issues, I miss my friends and teachers A LOT.

take care and I have replied to your PM that you sent me
Love
ALISON

My story started in 2005 on mother's day. I was waiting for my kids to come over and pamper me and decided to go out on my deck in the back and sit in the sun and take pictures of my cat. As I was going back a portion of my deck broke through where I was standing and I found myself dangling through the deck with my left leg in a pressure lock through the deck. I could not free myself. I yelled for my husband to help and he tried to but could not help me so ran to get a crow bar to break the deck further. He managed to pull me out after that and I had some rug burn type of markings and of course splinters galore. The leg swelled in the area it was viced. I decided I should go get it checked since it was also the leg that a few years earlier I had a ruptured achilles tendon and went through months of surgery, wound clinic healing, and the rest. I hated to think that I had done something that would mess with that. Well everything looked good at the ER visit and I came home. Nothing much was going on with it for awhile.
I was in some physical therapy at the time and the therapist as she was working with me noticed that I had a rash that was forming on the left leg and it was itchy to me and soon became very red and inflamed. They too thought I had an infection.
So I was put on antibiotic right away and the Dr. kept a close eye on me. After on day I went to the Dr. office he called me in a panic later that night to go to the ER immediately that they were thinking now I had a blood clot after my MRI examination that day. So I did what he said and was hospitilized. The next day they did some ultrsounds and found three spots that looked suspicious of blood clots. So they decided to operate on the leg. The went in but what they found was only dried pooled blood from the accident. When I woke up from the surgery they had packed my leg rather than sew it up. I now had to deal with irrigating and packing my own wound over a course of time. They still did not think it was RSD at the time. However the first physical therapist did mention she thought it might be.
Over the next 6 months the wound would not heal on its own and I had to go to wound clinic every week and have them use a scalpel on it and cut away the tissue so as to spark the healing process. It was the longest and not so much fun process. The hypersensitivity grew during this time and the would Dr. really wanted someone to send me for a nerve block. My dr. wasn't convinced of the RSD and would not suggest this.
I did finally have a nerve block that was lumbar and it did nothing. So went back in later and they did one directly into the leg. That did work and swelling went down almost immediately. I was very encouraged.
The pain however continued and I was sent off to a pain dr. that was more like a shrink. He was nice enough though but he was only the pill prescriber. That was it. It was annoying to go to someone that really wasn't understanding the problem.
Over the course it was finally agreed upon that I did have RSD. They wanted to put me on amnitriptylin and I was not happy with that. I did not want to do that and when I went to the Dr. that wanted it I walked out of her office and back to my family Dr. and said no what next.
Swelling and pain continued to be my life and still is. I am in a lot of denial so I want to minimize it even in here and find myself correcting my thoughts to admit that I have this severe pain that doesn't go away.
I changed Dr. one day and went to a ARNP she is very good and does a lot of research. She wanted me to try a different pain dr. and that started me in a much better direction. I still go to her today. She knew about my condition and understood the pain was real. She did not care that I needed some medicine and did not think I was some junky coming in off of the streets.
The first time she saw me she thought I should go for lymphodema treatment. That was through a physical therpist. I had light massage and desensitization with wrapping. I was prescribed a pump that helps to take the swelling off and its pretty comfortable to be on. That is pretty cool since I can't wear socks and just the touch of my kitty loving me sends sparks up me.
I completed that treatment and graduated to pool therapy which really helped me. I felt better doing something if nothing else.
Today I see my regular dr. the pain dr. and just finished up with some physical therapy unrelated to the RSD, but since I could not do many of their exercises I asked my pain dr. if I could go back to the pool therapy. I just went this week for the intake eval on that and will start when my name comes up on the waiting list.
My medicines:
gabapentin 300mg
hydrocodone 7.5 x 4
metacarbal as needed 3x day
Thanks for listening to my story...whew long one.

Hi from Washington State
 

:)Hi Jo and welcome too this wonderful support It's true, RSD effects everying in your life. To me, it's really a process of grieving. It's such an adjustment to losing your health and the ability to do what you formally were able to do.
To those of us that were phsically active, we have learned new ways to be active. The medication and the RSD affects our engergy level so it's really difficult to not give up. I've found that swimming it the best and easiest on our body for toning and remaining flexible. RSD affects the limbic part of your brain that controls jugment, depression and memory loss. There are medications that not only help with depression, but are used to help control nerve pain--they are anti-depressants. RSD also affects circulation in your body and blood pressure,, both high and low. I am on two different blood pressure meds and two different anti-depressants. Lack of sleep was a problem for me so my Dr. prescribed sleep medication to take as needed.
I was on an extremely high dosage of anti-seizure med, until Lyrica was out for a while and we decided to try it. For me, it was so much more effective thannureotin

Hi there,
 

Hi Jo,
I am so sorry about everything that you are going through, but I am glad that the pool therapy is helping you a bit. I have tried Aquatherapy but it didn't work, I couldn't stand the touch of the water on my leg. :mad:
It sounds like you have had such a tough time with the RSD. My PM doctor thoght that I had a blood clot or compartment syndrome when my leg swelt up overnight, thankfully it was just muscle swelling.
My leg is hypersensitive like yours, I can't wear shoes, socks, etc. I am unable to go to school due to mobility and pain issues. I miss my friends and teachers a LOT, my friends do come and see me every so often but it's not the same as seeing them every day at school.
I too suffer from depression, I guess it is because of the amount of pain I am in and the fact that I can't do things that a "normal" 12 year old girl would do.
If you need anything please let me know, I will be more than happy to help you
Alison

Oww.. Welcome, holey rough ride Jo..
 

Hi Jo welcome to NT.. and welcome loretta jewell as well.

I know you will find the support and information you need here at NT it is a wonderful place full of very nice people, suportive and helpful a very carring bunch of folks (alot of whom are still burried in the holidays with their familys at present :wink:).

I had my injury around the same time as you Jo, May of 05.. it seems like such a long time ago now, though it started in my right ankle it is now full body with organ involvement, and I am unable to work.. so I do alot of research to learn as much as I can, if there is a specific area of information you are interested in just ask, and it is probibly already posted in this forum with lots of opinions and imput from the members. Just read back the pages there is alot of very good imput here. or as I say ask away.

Also you can request certain information and someone will help you by posting links to places that provide what you need to know, or to tell you of their experiences with that drug or procedure, or just be there when you need a shoulder, it's a great group.

Meds, Loretta made a good point (many good points) in that antidepresants of a certain type do help with neurological pain... ALOT expecialy if taken at night (how is your sleep?). I am on Trazadone an SSRI antidepressant at night, and it helps alot for both pain and it regulates my sleep because night is the wost pain time for me, I am in to much pain to sleep much without it. I also suffer from depression and I am on a diffrent type of antidepressant for that symptom of RSD.

Lyrica is a newer drug that does wonders for me too Loretta, it was hard one for me to adjust to origionaly, but it takes alot of the symptoms down to a much more tollerable level body wide, some can take it others can't, most of us that are on it get quite good results from it.. and it is not a narcotic, it works and is composed in a similar way as the Gabipentin you are on Jo, but lyrica covers more symptoms than the Gab does.. And lyrica works much better than the Gabipentin did for me.

You have been through alot Jo and you are obviously a strong woman to deal with all this, those of you that can still remain working have my utmost admiration with this condition, I find my attention span is hugely disrupted since RSD as well as alot of other problems. I tried going back to school part time last year, and I found I could only retain very little of what I was learning., it was very frustrating.. I am intollerant of most narcotics so I am not on any but the other drugs to regulate the symptoms tend to effect my concentration as well I think.

Well I just wanted t come on and say welcome and look I wrote a book.. lol
Welcome both of you. If I can help in any way please don't hesitate to ask.

hugs, painless ones,
Sandra

I can really feel the emotions within each post that have been written. I just wonder how much denial I am in. I really don't think much about it and just do it. I think now in retrospect I may have lost my last job due to the medications that I was on and the pain cycle. I am not sure as now I am finding out more about retention of information etc. I used to be able to remember people's stories in my line of work but now I write things down as soon as possible to not loose things.
I am surprised at the progression of this disease and wonder now how much more of my body is effected by it and I don't realize it. I was just diagnosed with B-12 deficiency, my number was 172. That is really low. So I have to go in for shots for this month weekly and monthly after that. I will not poo poo it away like i might have before reading this forum.
It has been really hard for me to read this as I still think I am just fine.
When you talk about going to school I have been working full time, going through my Master's program online. I have a 3.7 GPA. I am going to start my student teaching in February and when I do that I will be working full time as well. I also hold down a 2nd job in my love of art. I teach lampworking to students. (making glass beads) I am an artist myself and I sell at shows and on ebay when I can pull it all together to get some listed. I have a website under Vanityfairebeads.com but have not been able to post any pictures yet. That is the last thing I try to get to so its still is waiting. But I love my website. I aspire to get that in there too. I am going to be 52 years old and I have 4 children. My last child we adopted and he is special needs. He is MR and is in special education. He is the light of our lives and is so wonderful to be around. The easiest kid ever. He will be 15 in March.
Ali, sweetie. I just love you over the internet. You are a remarkable girl and are living with so much at such a young age. You are so giving. I believe you will overcome all this and live a good life with lots of things to do. I am praying for remission for you sweetie and that your arm goes down soon.
Take care all. I appreciate everything that you are informing me of. It scares me to think of the future with this stuff however and finding this forum has really brought a reality check to my life. I can not be in denial anymore. I was wondering if you could point me in the direction of that card that you can give to people that describes the disease I think I need to give that to my boss for future reference.
huggles.

hi jo sorry we have to meet under these circumstances...my name is lauren and i much like yourself prefer to think that my crps really isnt that big a deal. i am a bit of a doctor's nightmare, in 2005 i had my first spinal cord stimulator implant placed. 2 days before i went snowboarding, jumped a snow making machine and proceeded to land on my head. my surgeon was less than impressed when he asked in pre-op when was the last time you were in the er and i told him. he has learned over time to just smile and laugh when i justify my stupidity with answers like "well i knew after surgery it would be a while before i got back on the snow, the powder was great so i decided to get in one more day". both he and my pain doc like to remind me that my body just cant handle all of the things i used to do and they both shake their heads when i tell them that i just have to figure out how to make it work.
i too am currently a student, i had graduated from the police academy prior to a serious injury that resurected the rsd that began in 1993, i had to quit my job. so i went back to college to get a degree in public safety admin, not quite the same thing but it will have to do. i used to be a full time student but the longer i have struggled with crps the more involved my brain has become, at this point i carry 6 credits a semester and i actually find myself working twice as hard. it is a challenge but i think that all of us in our own ways find a path that makes it work.
it sounds like you have a good support system in place which is probably the biggest factor. i commend you for doing as much as you do.
welcome and good luck

Thanks Wakegirl.
yep I can relate. Always seem to be pushing the envelope. The Dr. that did my nerve block began to mention having a spinal stimulator placement if the nerve blocks weren't working. The Pain Dr. have all said to hold off yet that it is still early in the process.
Do you feel it was worth that surgery placement?

Hi there Vanityfaire,
Most doctors don't want to do a spinal stimulator placement until all other medications fail to work.
I have spoke to many people that say that the spinal stimulators are really good.
These are helpful websites about spinal cord stimulators:
http://www.rsdalert.co.uk/treatments...Stimulator.htm
http://www.rsdrx.com/rsdpuz4.0/puz_23.htm

Sorry that I can't help you further
Take care
Love
Alison

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. :mad: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

Seeking RSD Doc in western WA. State
 

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. :mad:

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

I'm also from the So. Seattle area
 

Rsd
 

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.

careful of whos out there....
 

I would be careful on getting the b-12 shots. When a person has RSD they need to be careful on getting stabbed with needles because of th chance of it spreading to the area. So i would be very careful and see if you could take maybe a liquid or capsul. Just do some research

Hey Smile,

I'm not sure where you saw the B12 shots, but I agree with you. I can't get any shots without having so much pain just from the needle stick it's self!

I take a complex Vitamin B that has helped give me more energy than I have had in a long time so I recoomend Vitamin B's for sure. There is a facebook page with info. on Vitamins & other CRPS/RSD Research & Development. Lotsof good info from folks living & research9ing this Beast!!

How are you doing??
I'm getting over a icky flu the last few days & surprisingly less pain!!
Take Care! Sam