Reflex Sympathetic Dystrophy (RSD)

[livingwith]

In oct/9/06 I was a back seat passenger in a taxi cab, the driver went to change to the right lane and he was not paying attention,( he was driving with a broken arm and talking on the cell phone with the other) so after his lane change we hit a car as traffic was stopped, I flew out of my seat and hit my shoulder on the passenger back seat, I was more concerned with my knees and after about 10 minutes I lesft the cab and took muni home, Iwas quit shaken up, the next day I could not lift my arm ...Read the full article

[Lindaann]

I want to share with you that I too suffer with RSD I have for over 2 years now one thing that is very important do not get anymore cortizone shots in that shoulder anybody who knows about RSD knows that even a pin prick in the area where the pain is can make it worse. The good thing for you is that you have been diagnosed early and the sooner you get the block the better people who get the block with in 3-6 months of diagnosis have a great chance of getting it under control. I unfortunately did not get a nerve block in time and when I did get it I beleive it was to late. Please dont give up hope you are not alone there are many of us out there I am 46 years old I have 3 young children still at home and I tried to work this last year through this and it got really bad for me I am now going through a pain management program that is not working for me they think that you can meditate this awful pain away maybe some can but as for me I am a type A personality and I cant sit still anyway let alone taking time to breath through this firey pain. I know that you can get through this please email me if you want to talk my name is Linda my e address is [moderator note: e-mail address has been removed]

[katrina]

Keli I know what you are going thru...been there...it aint easy and even the people that love you the most can never understand what you go thur. 1st...be carefull about allowing any type of needle puncture or "exploratory" procedure done to you. This is how mine went from just being my right leg to now...being full body. Find a doctor experience in diagnosing and treating RSD before allowing anything to be done to you. I have been thru the blocks, spinal cord stimulator and a large array of medicines, what worked for me was the morphine pump which feeds the meds straight into you so you only need to take 1/300th of the meds you would take by mouth. I also get baclophen and bupocaine thru the pump as well. I have MSIR for breakthru and take Neurontin as well as many other symptomatic meds. I was injured in June of 1998 it wasnt untill May of 2001 that I found out the name of my illness. Those three years were spent being told there was nothing wrong with me, that my symptoms didnt make sense my family were the only ones that seemed to know that something wasnt right. I was actually dianosed with Multiple Scelorosis in Dec. 98, and Remittive Remissive Ms in Dec. 99 and put on Copaxone injections daily and told my pain must be in my head or just an exageration of the pain from the MS. Well some doctors still leave the MS on my chart but dont belive I have it but we did stop the biggest problem of that diagnosis which was the injections daily.

I know it is so depressing but dont give up. You have to find an inner strength and build it up even more so you have it to call on during the worst of the pain and depression. I find an simple MP3 player with some awesome nature and relaxing tunes on it a great tool. When I am very depressed or hurting really bad I get in a quite part of the house and listen to that closing my eyes and picturing long warm beaches or beautiful waterfalls and eventully I get so wrapped up in it sometimes it does dissplace the pain for awhile. Educate YOURSELF AND YOUR FRIENDS AND FAMILY!!! very important. For them to be around you or to be in your life they have to understand some of your health issues and how to help you when you need it. How many times when your skin is so sensitive do people with good intentions come up and pat your arm or your back not realizing how bad that makes you hurt. They need to know if they are simply driving you down the street to watch for bumps and potholes...its uncomfortable to them and unbearable for you. People that dont understand will laugh or think you are over reacting...I mean put your self in their uneducated shoes. So that is why it is important to educate those around you and learn to ignore those that arent.

I have tried to commit suscide...nothing I am proud of but I thought I couldnt bear the pain anymore. Then I realized I would leave my children with nowhere to turn and they saved my life. I still have my "bad" days that I just lay in bed and have a pitty party but most of the time even though it hurts so bad I get up and I rule my day. I try to make it as normal as possible and finally after all these years have my mind set...I RULE RSD IT DOESNT RULE ME!!! It is alot of work to get to that frame of mind and to keep it. Like I said I have my days. But I have to so I can provide myself with some quality of life so I can give my kids a quality of life.

Pain management is key. If you want to go work in the yard and you know it is going to hurt you take your meds before you do the activiy so it is working by the point you really need it. You have to compromise with RSD. I want to go shopping with my daughter or go baby shopping with my son and future daughter in law, I know it will drain me...I do nothing the day before and know Im going to hurt for several days after the trip so I am carefull what I schedule in those days. You have to have time between your activites to rest and recover. Its all about balance. I know I will never return to my job as a mortgage lender but I will be the best mom I can to my kids. Its hard to end your career and it is very depressing especially when you see that door in your life close. Open another! Only you can build you up and that is a hard thing to do. Sometime you just wanna cry and that aint bad either. You deserve a good cry from time to time.

Get support from other victims of this diease it will help and keep fighting I know it is hard but you can eventually beat this metally. I also wellcome you to email me at any time even if you just need a shoulder to cry on, a place to rant or whatever. Im here for you and anyone else that needs someone they dont know to take out their frustrations on. [moderator note: e-mail address has been removed]. You can also try these sites they are really good... http://www.rsdhope.org/ and also http://www.rsdalert.co.uk/

Good luck to you and hang in there.

God Bless
Katrina

[Lindaann]

Hi my name is Linda I just wanted to ask you how does the meditation help you to cope with the burning pain and do you still take pain medication? The Doctor I see is suppose to specialize in RSD but they are trying to take my pain medication away they say meditation and exercise is the way to deal with this and I am really struggling with this and non opoid medication along with over the counter drugs It is hard for me to meditate and do yoga when first of all I can even do the stretches because of limited motion in my upper extremities

[keli]

Hi Linda thanks for the question, I dont meditate but mabey i should try it. I had a stellate ganglion block on feb 14 and had 5 hours of pain relief but that was it! Dr now wants to do a selective nerve root block. I still take pain meds, actually today was a very rough day, I am on so many meds they are lyrica 3xday naprosyn 2x day norco up to 8x day, cymbalta 2x a day, seroquil 3x a dayznaflex 3x a day and now methadone 3x a day but i havent tried the methadone but willing to try anything oh an also luensta at night, im thinking about dropping the lyrica as it makes me so dizzy i now really havent been consistant in taking it for 4 months. I hope it all works out for you let me know your updates.

Thank you

keli

[keli]

Hi, first i wanted to thank you for your story and words of encouragement, I cant believe what i was saying, I get in manic modes from time to time and guess i was there on the day i made my post. I feel guilty spilling out everything when there are many others who suffer from this. My problem is i love to help others and find it very difficult helping myself! Things are actually comming together, I love my new pain management dr and my primary care dr, on april 18 i had a cervical nerve root block, which hurt like hell and i was laid up in bed for 8 days and did not eat, this did not work at all, actually the stellate ganglion blocked worked for 6 hours and it was the best relief i have had in 18 months!, my pain dr wants my shoulder scoped just to make sure i do not have a labral tear which many do not show up on mris, I am happy about this as I am hoping for a tear and this will either prove 1 or the other, i know i shouldnt have surgery as the risk with rsd and surgery and needles can make it much worse but i am desperate, Im not sure if i can live with rsd im really scared to have to know i have to deal with this the rest of my life. Again thank you for writing me back and I hope you are doing well as can be.

all my love

keli