Nancy,

It's of note how many responses this thread has generated in a short period of time. You have obviously struck a nerve, so to speak.

I forgot to say that if you're at all interested in exploring the concept of using meditative techniques in order to completely experience pain without being bothered by it, as paradoxical as that may seem, check out an article on Shinzen's website "A Pain-Processing Algorithm" which can be directly linked to here: http://shinzen.org/shinsub3/artPainP...gAlgorithm.pdf

To give you an idea of the sense of perspective, Shinzen's teacher, Jōshū Sasaki Rōshi, who at 102 is literally the world's oldest living Zen master (who's public talks I've had the priviledge of attending although never been able to study directly with him because my health does not permit me to engage in the physical rigor of a Rinzai Zen retreat) puts his role in assisting students to completely experience whatever arises in their perception, with openness and equinimity, as follows:

I am a travel agent, selling tickets between Heaven and Hell, to which you can go, indifferent as to the destination.

I apologize if anyone thinks this is over the top, but trust me, this has little if anything to do with the usual concept of religion, and everything to do with being so aware of the various aspects of experience on a second by second basis, until physical pain breaks up into manageable sensation, no more, no less.

The same concept from a Christian perspective is addressed in many places, from the writings of St. John of the Cross and in particular his Dark Night Of The Soul, to many of the 70 books of the late Thomas Merton, a Trappist monk and later priest with a PhD. in English from Columbia, who distinguished between the idea of what he called "Zen Buddhism," as that religion which which began in China and spread to Japan as well as the rituals and institutions that accompanied it, and Zen itself, something he said was not bound by culture, religion or belief. (Solitary Explorer: Thomas Merton's Transforming Journey, Elena Malits, Harper & Row 1980, pp. 106-112.)

I hope this is useful.

Mike

Hello Nancy,

The emotional roller coaster is almost as bad as the pain. I have full body RSD (9 years).
In the beginning I was a mess. I was trying to keep life as normal as possible and not let anyone (even my husband) know how awful the pain was. I wasn't fooling anyone.

I thought about suicide (spelling ?) and how I would do it. I started to the garage and I stopped got down on my knees and asked God to help. He is the only sure thing in this life of RSD. Every night I ask for his peace that passes all understanding so I can sleep and every morning I ask for the energy and strength to face the day. He never fails me.
God has sent the people into my life that help me manage this awful pain.

RSD is frustrating. It's important to have the right doctors, medication and exercise. I like water walking and swimming at the Y. Dr. S is Philly told me the best thing I do for myself is seeing a Chiropractor. Finding the right doctors is a challenge as is the medication that will work for you. It can be done just have patience. Once I accepted my condition and stopped looking for a cure around every corner. It was so much easier to live.

Don't allow RSD to define you as a person. It's OK to cry sometimes don't spend to much energy on crying. God gives me the peace I need.
Take care,
Sherrie

You're welcome and thank you! I have a couple of crps and preg articles coming out soon. I hope someone will find them as helpful as others have found all the ones I've written on crps so far. There's so much to write about so I'll have topics for a long time yet! lol The next couple coming is crps and weight loss, then a physical therapy series.

Hugs,

Karen

Hi Nancy,
Sometimes I don't even recognize myself any more...with my mobility limitations and other changes, I have lost the sense of who I am...and I greatly miss who I used to be...and I cry and lament the things I can no longer do (hike, stroll, be-bop around town, etc.)

But I must agree with fmichael about how helpful, insightful and psyche-saving the Shinzen Young C.D.s are. (particularly Break Through Pain and his book by the same title) When the burn pain is really bad and the nights are endless, I will listen to his C.D. as I try and fall asleep..he reviews how to cope with pain in a very humane and understanding way...
I have also found meditating to be a great help in retrieving balance and gaining some peace of mind and body....and finding myself again despite all the changes.
Take good care, Nancy,
Hope4theBest

Dear Sandy,
I am so very sorry you are going through this. I happen to have had shoulder complications,frozen shoulder, following breast surgery,benign. It took 100 physical therapy sessions to get range of motion back. I also had massage therapy just prior to the pt. Tho painful, it was good to go thru both. I also have severe headaches. I also have trigeminal nerve disorder. I don't have the breeze pain like so many. I think it was because of the physical therapy and using a tens unit. I injured my hand and during therapy, they also did desensitzation. I also did it everyday at home. I took several
tupperware bowls. I put cotton balls in one, coffee grounds in another, rice, beans, sand,
just several different textures and run my hands, fingers, and feet,toes, through them.
I know how bad the depression can get. It's been 13 years for me, and I still cry. It's a terrible thing to have ones health ripped out of their life. There is a wonderful book called You can't Afford The Luxury of a Negative Thought by Peter McWilliams. It coms in Hardback and paper back.
Michael J Fox just wrote a book called"Always Looking Up" It's about his struggle when he got parkinsons.
When my parents died, I did a couple of years of counseling and it really helped. I've been see a pyschiatrist/neurologist,pharmacologist. He manages my pain, and is so compassionate and helpfulin my struggles and adjusting to this life changing condition. I use a lot of different things for distraction. epson salt bathes, scented candles, meditation, prayer, exercise, stretching, swimming, comedy movies, my favorite music, keeping in touch with lifelong friends. Journeling is a wonderful aid in releasing painful feelings and loss we have. Writing down your feelings, can be a huge help in figuring out what is bothering us and releasing emotions. One of my meds is an anti-anxiety med called lorazepam 2mgx3 times a day. My Dr. changed my sleep aid and cut my anxiety med in half. Ambien CR wasn't working at all. I wouldn't get to sleep till 5-6 in the a.m.
and then sleep till the afternoon. The new med i sleep from 10-11 till 8-9 a.m. Sleep is imperative to cope with RSD. I was crying a lot, but as I adjusted more to this, it got better. I had been on two double dosed anti-depressants before changing to the one-cymbalta.
Have you ever had desensitzation sessions? Maybe you Dr. will order some pt with the desensitizing. I did have that and it was miserable.
Do you belong to a local support group? You can go on RSDSA and put in your zip code and they will give you a name and phone number to contact a person for time and location closest to you.
Please know we care and take care of yourself, loretta

How could RSD not make us emotional and not change our lives. I always think about the way I was before I got this ugly and crul dieases. I was always on the go doing my nursing work,hiking,camping,downhill sking.(sp?) Anything that had to do with the outdoors! Now I am on SSDI and I do not like it. Sometimes without thinking some of my very close friends say (well some of us have to work!) It makes me so made. After I had worked for over 25 years as a nurse. How do they think I feel? Like I wanted to get RSD,ya right. Yes I do cry, then I do try to think about the people that have worse situations then I do. I do have big time problems trying to fall asleep! I have been to a sleep lab where I spent the whole night there,just to find out I have what is called (sleep misperception state) Basically it is when you think you are not sleeping and you really are more than you think you are. However I am only sleeping only 4-maybe 5 hours a night.The pain wakes me up most of the time,or my emotional state. Love To All By the way this was a great thread! Breezy55

I have been dealing with this for 2.5 years and before my rsd I had severe depression/anxiety. I had seen a psych on and off for eyars but when got dx with this I quit as I wanted to just work with pain control. Anyhow as the years past and my pain level plus more health issues happened I became an anxious,depressed,almost like monster mess. After a very big push from my family I went back to a psych and on meds for anxiety/depression etc 4 months ago. I am so glad I did. Though I still have high pain my outlook and coping is still better. Even people in my life have made comments. I am more rational and through the bad days which I have both mental and physcial I can now remain more hopeful still. I think a combo approach with a pain doc and a psych works well. Hang in there

This is one area I feel I've failed to help my wife who has RSD. In her early days of this disease she was under no pain control which lasted around 4 years. She was falling apart and became very paranoid. Now she is much better in the pain department but still has several days of depression. She's sad and only talks to me and her doctors. Only when I insist on visiting folks that she will venture out. We used to be a very social couple. I've suggested and her doctors have suggested that she should talk to someone that can help her in dealing with her depression but she refuses.

At the risk of being a downer;

I mostly go from one negative emotion to another. These negative emotions are closely correlated with the pain but some also come when pain is low or absent altogether. When I feel the pain before the negativity I'm depressed and when I feel the negativity before the pain I feel guilty like it's all my fault. This is an embarrassing condition and I'm always feeling guilty about not working or not beimng able to do much (which is the leading cause of depression).

Anti-depressants give me all sorts of trouble but I don't think I could take them even if they didn't because they just paint a fake smile on my face and make me feel worse. Lexapro is a little better but I don't tolerate it well. When I can suppress the pain and the depression sometimes the paranoia will flare up. This is really just another type of pain; a sort of mental anguish.

I need to keep busy but it has to be something that doesn't require rapt attention or the pain will sneak up on me like lion. Of course physical activity is pretty limited. A little bit of overdoing it will cause a two or three day excursion.

It's been especially tough in the evenings lately because of extreme boredom.

This is exactly how my wife explains how she feels, exactly (she has RSD). She thanks me all the time for taking her to the doctors or do major repairs and upkeep around the house etc. I tell her to stop thanking me, I'm your husband and will do anything to help you, because I want to, it's our home, you have things you can do and those things that I can do and that's that. I feel I don't express myself enough to get thru to her that I'm very serious, I will not let her fall. Her guilt is enormous, she worked her whole life and feels that she is not contributing, but she is very much so.