Reflex Sympathetic Dystrophy

I have been diagnosed with RSD (Reflex Sympathetic Dystropy). I have been on several different medications for what seems like a long time (including morphine and percocet). The meds do actually help but they do not take th pain away they just lessen it.  I have had several shots in my back, the last of which was a week ago, now i am confined to my wheelchair (I can only take a few very painful steps).  It seems that everything I do to try to ease some of the pain makes it much worse.  I am almost afraid to try anything else, but I am not sure how much more pain I can take. I have been in constant 24 hr a day pain for over 3 years now.  Is there anybody that knows about RSD  that has any suggestions for reducing my pain?

[namnam46]

First, I want to welcome you to the Pain Management Forum and let you know that I'm very glad that you found this Forum. I need for you to understand that there are NO Doctors on this Forum only CP (Chronic Pain) Patients that help each other through our own experiences and expertise that we have gained from our own pain conditions.

I'm VERY sad to hear how much you are suffering from your RSD.  I can't begin to imagine the pain that you experience EVERY second of every day. I think that you are a REMARKABLE young woman to be able to manage the things that you do each day.

I am sorry to say that I don't have any experience with RSD but I'm hoping  that someone will come along and be able to help you.

Is there anymore that your Doctor can do to help alleviate your daily pain?  

I hope that someone else will come along and be able to give you some good suggestions that can help you.

I HOPE and PRAY that you can get the relief that you deserve.....Sherry

[Tuckamore]

Hello Dhossler,

Welcome to the Pain Management Forum. I am so very sorry to hear about your severe RSD and the huge challenges it has presented. My heart goes out to you.

I wish I had a great answer for you to help you with your pain. Unfortunately I don't. If it helps to know that most of us suffer with chronic pain in varying degrees most every moment of our lives you have come to the right place. You are not alone.

Please forgive me if I repeat the obvious or suggest options that you have long since tried. I don't have to tell you that treating RSD is not simple. The disease in general is very complex and can come with complications.

There are some homeopathic treatments that have reportedly been successful when mixed with conventional medicine and treatments. Some of these include herbal supplements, acupuncture and massage or water therapy. If you have not consulted a physician that offers homeopathic treatments I encourage you to consider it.

Have you had a thorough exam by a D.O.? Doctor's of Osteopathy are trained and educated almost the same as an MD. However a DO's focus may be a bit different as they view the body as a whole, a complex related network. They practice osteopathic manipulation treatment (OMT), which means slight manipulations of the spine or other structures. They are taught to confirm many diagnosis by touch in addition to the usual diagnostic testing tools. OMT's can be extremely helpful in pain management.

If you haven't guessed I see a female Internal Medicine DO. OMT has been the only treatment that has had any success in managing my often extreme chronic pain. I encourage you to consult a DO. Keep in mind not all DO's continue to practice OMT so you will have to ask when you are searching. Had someone told me this nine years ago I would have dismissed their suggestion. Today I cannot say enough good about a skilled DO.

If you haven't consulted a large major clinic or a clinic affiliated with a large teaching hospital I also encourage you do include that in your search for pain releif. These facilities and physicians are on the cutting edge of new medications, treatments and procedures. It may be worth your time to explore that option.

My dear, no one should have to live with extreme and constant irretractable pain. There are many medications on the market that can be tried in multiple varying combinations. It seems apparent that your current medication regime is not managing your CP. Please request and try other options/combinations until you find one that is more effective. Be assertive and refuse to accept your current pain levels.

Please know that we are here to offer you support. None of us are physicians or experts but we certainly know chronic pain...all too well. I hope that you will become active in our community. Please feel free to ask additional questions or just vent. I will look forward to hearing from you again soon.

Take Care,
~Tuck

[dhossler]

Thank you sooo much.  I have tried the teaching hospital (that is where this all happened to me).  I had 2 surgeries on my back, both of which were done there, and then I went to the pain clinic there which is where I had this last shot. They actually told me sorry we made your pain worse lol.  The doctor told me there is nothing more he can do for me  lol.  
I am looking forward to being a member here.  Not only may somebody have suggestions for me, I may be able to help somebody else. Even if it is only to have somebody listen to me vent.  Im also a great listener for somebody to vent to.  Actually I should say a great reader lol.

[dhossler]

Thank you very much !!  I am looking forward to being a member. I have been to sooo many doctors.  Most of them tell me there is nothing they can do for me. My family doctor is the one in charge of my daily meds, and he did have my pain somewhat bearable (I was still in constant pain but I could handle it).  The problem now is that the pain is getting worse but my meds aren't getting any better. I am on very strong meds but it is not enough.  I would NEVER wish RSD on anybody not even my worst enemy. It is not fun and it controls your life.  Sorry Im venting again and I didn't want to do that. I just wanted to thank you and hope that I can help somebody else.

[Tuckamore]

Wonderful that you are planning on being an active member. It is our goal to assist and support others. I am sure you will be able to be of help to others.

I have been old the same. There is nothing that medical science has to offer me. It's always startling news. But more importantly it's what we do with that information that matters. At first I was in denial and I was angry. Once I learned to accept the cards that life has dealt me....everything became easier. My goals are well defined, that is to be as comfortable as I can, for as long as I can.  That means different things for all of us.

Most of us are left with the medications that are available for pain management. I have learned that we will all have different levels of pain. Nothing can it completely away, so we cope in other ways.

However the key in my opinion is acceptable levels of pain. If you are consistently a 7, 8 or 9, your pain levels are not within limits of reason. That's when we need to be assertive. We all have to endure the challenges of chronic pain but none of us should have to live with unrelenting, unbearable levels. There's too many medications that can make a differance. My little rant for the day. :)

So Welcome Aboard. I am very glad that you have found us and will remain with us.

~Tuck

[dhossler]

I have done the denial and the anger.  When I was first told that I'll never work again, I cried all the way home.  I have been trying to keep myself busy (reading, knitting, cross-stitch, gallery glass etc). I try to keep my mind occupied with other things besides pain. I try to think of happy things, but sometimes I just feel soo depressed.
Right now its really hard. I am now confined to my wheelchair and that really stinks (and I keep getting really close to running over my dogs lol).  The husky doesn't care he won't move he just lays in my way and wants me to go around him (my house is not that big) lol.  I also have my little shadows, 2 Shih tzus. I told my boyfriend that I wanted a lap dog (all my life I had big dogs) and a friend of mine was expecting puppies.  I fell in love with 1 of them immediately and my daughter fell in love with a different one almost as quick. Needless to say we ended up with both of them.  My Colby is exactly what I wanted and needed, and Bandit is also my baby. Just watching them running around and playing makes me laugh (even when I felt like crying a minute before). They both cuddle with me and sleep with me. I am sooo glad I got both of them I don't know what I would do without them !!!
Its amazing how much a pet can help when you are dealing with chronic pain and depression.

[mellie4]

I have RSD after multiple surgeries to my hand.  I've been having stellate ganglion blocks in addition to the medication.  I do think the blocks help the RSD, though so far, only for a short while.  It's a frustrating diagnosis.  There doesn't seem to be much in the way of treatments that work, and the pain medications only cover the pain to a certain extent.

I'm glad you'll be part of this group.  It does help and I think you will be able to bring your experience to the table to help others.

[Lynnies1]

I was diagnosed w/ RSD(both legs) in 2006.  I had arthroscopic surgery on my knee.  After 2 mos. of having numbing/ burning pain my dr. diagnosed it.  I have a wonderful orthopedic dr. who specializes in neurology.  

I came upon a website and it has helped me tremendously.  It is RSDrx.com.  This site is from a dr. who specializes in RSD.  He is now retired but his findings are still on the site.  Especially take a look at the 4F diet.  It is not a weight loss diet.  It is a pain management diet.  You will be amazed at how many foods we eat daily that can set off pain. I hope this info helps you.

[mellie4]

Have you done the diet?  I've never heard of it before.  How do I find it? Do I just google it?

[jscott56]

I was diagnosed with RSD 23 years ago after an ankle dislocation and area below the ankle dislocation.  I have begun going to my family physician for help because the pain clinic wasn't helping and because of the meds, I had a life threatening infection masked by the medications.

My family doctor has me on Lortab 7.5/500, Trazadone, Baclofen, Low dose Tegretol, and Elavil, and Valium.  It isn't touching the pain or constant severe muscle spasms.  I have been through nerve blocks, dorsal column stimulators and infusuion pumps.  All to no avail.  I am back to the drawing board and the internet.  I go days before I nightmare (sleep) for ten to fifteen minu

I am searching again for answers.

Julie

[cbailey]

I am a nurse and I also have a pain problem from birth defect. You really need to go to a (pain syndrome) specialist or neurologist. You do not have just chronic pain. RSD is a pain syndrome that causes intractable pain. You also need documentation of your RSD so you always have access to medications you need. I am not trying to be controlling, its just that I also have a pain syndrome and had to get proper documentation due to new DEA problems. I am sorry you have a pain syndrome, they are so very painful. I would suggest trying to find a RSD specialist. That way you could get the latest treatments, also a specialist will understand how to treat you. Good luck