Reflex Sympathetic Dystrophy Support Group

Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a chronic condition characterized by severe pain following injury to bone and soft tissue. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or...

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mountainmom 08/03/2009

Hi everyone. I have noticed lately that discussion has lagged for the RSD posting site. I would like to get it moving a little. What do you all do to escape the pain? I read, oil paint, and garden when I can. I have 25 roses that take a lot of my time, lots of flowers and now this year a garden to tend. I discovered it was a lot easier planting and watering then processing what has grown. My husband built 6- 3 x 10 by 3 feet high raised beds with a seating ledge on each for me to be able to garden, as he knew how much I enjoy it but how hard it was to do one handed. The beds are so full and healthy they are cascading over and down and in producing like crazy. I did discover not to plant bush beans with trellised cucumbers, that poor bed has been in a huge struggle since it started growing and slowly the cucumbers are winning, but the beans are giving a great fight! My family promised me they would help but so far, not so much help. I have decided not to get upset or fustrated I do what I can and throw away the stuff that goes bad.(so far not much has thankfully) I use all kinds of tips and tricks to help control the pain, like tens unit, deep breathing, meditation, hot pads, cool baths-NO ICE because it is bad for RSD, elevating my limbs as needed, and of course medications ( which are not always the right answer and I have to back up and try again on something else). Has anyone tried different diets? How about biofeedback?

Anyway, for all those who are new to the site- do not give up because not much posting happens. I have noticed that the way it goes here is read the posts, discover people who are like you in situation, temperment, etc and reach out to offer friendship. Remember there are several different discussion groups going where you might find friends, like chronic pain, or other groups. RSD comes with a lot of things happening to your body, there is the depression group, neurological damage group, etc...don't give up if you don't find the friends you need in the RSD group. Then message those friends, and they will message you back. And before you know it you will have started to develop your own support group of people who are having a lot of the same stuff as you and maybe some different stuff that they need help dealing with. Before you know it, when you sign on you will have hugs and messages waiting for you, and you will find the support you need there. Take the time- it's worth it.

And remember- add here what you do to escape the pain?

deleted_user 08/10/2009

I have a standing appointment with a psychotherapist. This week he is going to start teaching me hypnosis. I also use my own combination of drugs - all ordered for the different pieces of me that hurt- gabapentin 100 mg three times a day with xanax 0.25 and then tylenol arthritis 650 mg/tablet; and then celebrex 200 mg in the morning and then the lortab when those fail and then the lunesta when sleeping hurts. i also garden, have two huge dogs who are basically just spoiled brats; ten cats and a house that is always in need. I live alone so I am very grateful that I found this web site. Got to go, I am at work and just wanted to chat for a minute. Kate in South Texas

deleted_user 02/11/2010

For me, i like to try to escape the pain by writing and reading. Especially reading. For me, I like reading because its a way to get lost in another world. Its a nice way to escape reality. I hope you get better, I know what its like. I am young but I do know things lol
Keep in touch?!?

janicesf 02/14/2010

writing ,playing with my cockatiel..,blol out with movies but you know theres no easy fix i had bi ofeed aspart of councelling
give ita go

janicesf 02/16/2010

ah as john lennon says what the world neds now is love ewet love and never a bird he+lping on a mouse o r key board hey mountain mom your roses look cool i was given a raised garden if this is wrong blame bart hes bored they are east ive grown an egg plant and loads od other stoff its so cool

deleted_user 02/22/2010

Have yet to find anything that helps me escape the pain. As my RSD is linked to a orthopedic problem which needs to be resolved, then i will be able to start making progress. 22 months ago i had surgery to what i hoped would help with my long term pain, but 2 failed surgeries and now with RSD if feel that i am worse off now than i was 2 years ago. Every day is a battle, and even the Oxycontin 80mg do not seem to help anymore. Once i get the surgery issue resolved, then i will be able to make headway, and find away to cope with this.

deleted_user 02/28/2010

I use my pain if I can focus on anything I write or draw or do abstract art. I helps depending on how bad the pain is. I usually have to take quite a bit of medications like Oxycotin, Oxycodone, Gabapentin, Naproxen, muscle relaxer (can't think of the name), things like that. Plus I take daily walks that just go around the block for physical therapy. My RSD is in my left ankle and I have other problems in that ankle besides RSD.

deleted_user 03/15/2010

With my RSD spreading and episodes of flaring - each day is different. Lyrica has definitely been helpful for me I'm happy to say. However, it doesn't help with bad flare ups.

I've been trying swimming for exercise since any other kind of exercise causes so much pain. It was depressing especially with all of the weight gain from not working out. I used to work out and run every day which I can no longer do. So, I joined the pool, and exercising in the water is definitely easier on my body, but I still wish I could do more.

I was managing pretty well and was happy for a while - but I feel like I am slipping backwards into a depressed mood. Pain definitely affects my mood. And stress definitely affects my pain.

Each day is different - I find the best way to deal is to enjoy the good days, and just count the bad days as taking a break. There is no point in being angry - just rest and wait for it to pass.

deleted_user 03/27/2010

ppbbls and theedge i know how you both feel with the depression and medication not working. the depression what helpd me was to find an outlet for it and all the emotions that come with it. I use writing and drawing which both are good emotional therapies for a person. anytime I get depressed i start to write and draw and soon enough i am doing better emotionally. a lot of the time my pain is so intense that medication doesn't work and the only thing you really can do is trying to take your mind off it by focusing on something you can lose yourself in or to try to sleep til it passes and your body will know when it does and most likely you will wake up.

deleted_user 05/01/2010

Sometimes I sleep it off w/ a heating pad on my back & heating blanket... heat (dry) seems to help...

Also I listen to Jeffery Thompson's Theta Meditation set of CDs.

See...
http://www.amazon.com/Theta-Meditation-System-Insight-Intuition/dp/B00000IXS0/ref=sr_1_1?ie=UTF8&qid=1272734336&sr=8-1-spell

I've used this after surgery in the past & for relaxation as well as for this RSD pain... I would NEVER drive w/ this music, or allow any doctor doing surgery, or team, to play it on the overhead in an OR, as it is thought to be brainwave altering, but if you have time to sleep off the pain, put it on repeat & let it play!

Dr. Thompson did research on music and brain waves. Nice music and helps you relax, as tensing up increases pain & this music is designed to relax you & change your brain waves.

Great stuff, especially with other treatments... not a cure by any means, but more helps you get into a meditative state & to relax.

deleted_user 05/01/2010

Hi MountainMom and all the other members! I'm new here. I've had RSD for 12 years and have been crocheting, when my hands allow, for family & friends and am now making chemo caps for cancer kids. It not only distracts me from the pain but makes me feel good about myself. Which is really important to those of us who have put on weight and may be in wheelchairs, etc...
I also like to read, and take pictures of all the beauty around the property I live at.

deleted_user 06/25/2010

You've got to get to Providence, RI to see Dr. D'Amato! Please google Competitive Technologies Calmare Pain Treatment or Google Dr. D'Amato's website under Calmar Pain Relief! God bless!

deleted_user 07/04/2010

I have R.S.D. after a knee replacement. This is all new to me. I'm just learning.But I have been working in the yard, reading.and writing. Just keep hoping for the best.. I"ve had 2 nerve blocks that have helped quite a bit. An the Lyrica just about keeps the bee sting feeling out of my toes and lower foot. I keep reading places about the hot flashes, I'm having cold flashes every since the surgery. Does anyone else have these.

deleted_user 07/10/2010

Hi, I'm new to this sit, I feel like I need help right now.. I have had rsd for 81/2 years, My pain has escalated to an almost intolerable dimension over the last few months. And I believe the increased pain has to do with hormonal imbalance as I am now in the peri menapause state. has anyone experienced this? I am not on medication as I am an addict in recovery for 19 years, I try to find natural ways to reduce the pain, I have tried everytihing even the spinal stimulator. I was a work out buff before I got injured, it has been such an emotional rollercoaster only you can understand. If there is anyone in recovery with this condition or going through the effects of hormonal changes increasing the pain, please contact me, I am at my wits end. Thank you

deleted_user 08/29/2010

Hello, I am new today. I would love to know what people do as an escape. This crazy thing has me disabled. The meds make me sleepy, but I scrapbook when I'm up to it. I do some non-profit work and teach scrapbooking classes for that group. My major problem is that because people don't see anything wrong with me, and I don't complain all the time they assume that the pain isn't there all the time. I don't want to wear a sign that says please stay away from my feet, yes I hurt, no, I don't want to go hiking!

deleted_user 09/02/2010

My son had RSD for 8 months and is now pain-free due to the new Calmare pain treatment. This treatment sends a "no-pain" message to the brain through electrical impules, just like nerve electrical impulses, from electrodes attached to key nerve impulse points on the skin. It is not a glorified TENS machine. The Italian inventor has unlocked the code that sends the "no-pain" message instead of the "pain" message that is being sent to the brain by the nerves. My son had the treatment in June and is still completely pain-free, and the three clinical studies by three major U.S. teaching universities show that there is either complete pain relief or a huge reduction in pain that has yet to recur in the past 9 months of being treated. European studies verify this treatment lasting even longer, although it's only been used in Europe for mainly the last two years because it's so new.

My friend's mom is 65 and has had RSD for the past 11 years. She went to Dr. D'Amato in Providence, RI for the Calmare pain treatment also, and is now completely pain-free! It is truly here - the answer to all of those prayers we've been praying. Unfortunately, the company that is marketing the Calmare pain treatment in the U.S. is having a lot of trouble from the pharmaceutical companies, because it means a huge reduction in their revenue. They have managed to get the company's stock de-listed and all kinds of other sneaky things. But there are more and more caring doctors who are starting to see the results of this treatment and are being trained on how to use it, so more and more of them are becoming available in different areas of the country.

I hope and pray that you will research this and get this treatment so that you or your friend or relative who is in pain can also be set free!

Blessings, Kim

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