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...
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?
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?
I read a lot. I loved to garden, but my husband has not built me raised beds.
I love photography, my daughter in law has that in common with me.
Notice many of the activities we list do not involve other people? Most of the things we are listing are things you do by yourself.
I think getting out and actually doing something is a great distraction.
It is the best medicine (besides laughter) and it seems we can keep a sense of reality when we socialize with others.
I am grateful for this forum, it is a chance to socialize, although we are doing it alone...
Thanks for picking up the discussion mountainmom, you had a lot of replies.
I`ve been suffering with RSD for 8 yrs now. The pain is overwhelming. My RSD is in both my arms, hands, wrists, forearms, elbows, shoulders & now slowly moving into upper back. I`m very limited at what I can do, seeing as we use our arms for almost everything. It takes a lot of medication for me to even be able to come on the computer & type.
I find it very difficult to find things to do that do not involve my arms. Even going for long walks is difficult because I cannot seems to stop swaying my arms when I walk (it`s not an easy thing to stop,lol). So I spend a lot of time getting comfortable & watching TV. I`ve had to give up so much due to this monstrous disease, my life as I knew it is gone. But I try to stay positive... hope for a cure or at least treatment that is more effective than taking all these narcotics to help with the pain.
The side effects of the Lyrica, weight gain & vision issues have made it difficult. And of course you can`t do much when taking the oxycontin or oxycocet except sit & relax and enjoy the time your not in chronic pain.
Depression is almost iminent with RSD. I`ve been put on an anti-depressant... doesn`t seem to help much.
I`ve been waiting for over 1 yr for my first never block, but have been advised it could take up to another year due to long waiting lists!
These support groups are great. So much information & great ideas out there!
Keep the info & ideas coming!
Wishing everyone HIGH spirits & LOW pain!
For the last 6 months or so I have been going through my own trials with RSD, and it progressing above intolerable pain levels no matter what I do. So like most of us, I have retreated away from the computer and life right now as I deal with new levels and new side effects. Also just found out I have entered periomenopause, pretty sure that is playing a role in the increased pain levels.
For now, it is a huge struggle for me to just get out of bed and try to interact with my family, which has grown- my oldest daughter and her boyfriend moved back in and are expecting an addition to our family in the spring. Sigh- now I worry if I can even safely hold my first grandchild.
Peace to everyone- and gentle hugs,
mountainmom
I agree that you don't see many postings here but if you also join the chronic pain group, there are many RSD sufferers/survivors and more are joining so please know that anyone in chronic pain can understand what we go through also. DS has been a wonderful place to get support and to support others.
I've had RSD since June 1999 and have no choice but to take pain meds to have any quality of life and am disabled by RSD.
It started in my right foot after being a pass in an auto accident as I braced my right foot before the impact like an "imaginary brake" and thought my right foot was broken for 3mos until my diagnosis of RSD.
In less than 2yrs it spread up my right leg, into my right hip/sacroiliac area. Since January this year it has spread up the right side of my back to my shoulder area. I do feel blessed to not have it full body after 11 1/2yrs but that doesn't mean that even with meds that I don't suffer from chronic pain 24/7.
To get my mind off the pain I focus on other things; anything to make me not feel it as intensely.
I love to write, help others who suffer, watch TV, listen to music, go to church, and try to help my aging family even though my doctor gets on me for over doing it too often.
I refuse to give up as I may have RSD but it no longer has me.
It has taken me many years to learn to cope with RSD, the pain, and to learn that with all RSD took away, I still have a purpose in life and a reason to be here.
I live alone, haven't even tried to date in over 2yrs, and have no children so to keep from feeling so lonely, I truly enjoy getting to know others with RSD and many become family to me.
My prayers go out to all of you,
Rhonda, IN