Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-25-2008, 06:07 AM #11
gabbycakes gabbycakes is offline
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Default Happy Holidays

I have been at the point of yes I am getting better to I can't believe I feel like this today. RSD is so hard to deal with period, but I do agree with the post who stated that you can never give up, a very true statement. Right now I am into this mess it will be 6 years since my accident and DX with RSD 8 months later did all the normal procedures you see talked about. At this point I have some serious spread going on which has just happened over the last 2 or 3 months but around Sept. I felt great, it is such an up an down process, for me that is the hardest to deal with.

I have a question of RSDer to ask if you don't mind, when you say "received ketamine the correct way", what does that mean. I have done ketamine 3 5 day icu treatments with boosters. I have had some success but always's seems to come back after time. I am aware of some of the protocols and would be interested in the differences if you don't mind. I actually spoke to Dr. Kirkpatrick about 4 years ago when I was looking for a doctor to do ketamine. I live near NYC so I have a wonderful doctor in the city who just keeps on plugging along through all the ups and downs.


I hope everyone feels a little better today....


Gabbycakes



QUOTE=RSDer;433378]Lori Lee,



Don't give up, don't EVER give up! I am 3+ years into this and had just about given up figuring I'd spend the rest of my life like this. But I found a wonderful doctor here in Tampa, FL who has put me into remission with just a series of 3 blocks that were administered the RIGHT way - not the way that the doctors did more than 2 years ago. You are early into this and I know how hard it can be during the holidays, but you have an EXCELLENT chance at getting this thing into remission!! But you have to become your own advocate and drive your own treatment program - that's your new job and as an ICU nurse you'll be EXCELLENT at it. You just have to focus your mind and take control here - YOU CAN DO IT!!!

Feel free to PM me if you like.

Jan[/QUOTE]

Last edited by gabbycakes; 12-25-2008 at 06:11 AM. Reason: Thanks
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Old 12-25-2008, 08:33 AM #12
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Thank you so much for this post-I can't tell you how many times I read it. Sometimes this is so tough and it really shatters all of those "life plans" that float in your head. I'm already in with someone to look into the surgery-all I know is I fell asleep without it and woke with it. There were also some strange comments during my block for surgey which lead me to believe that this wasn't entirely a lightening strike. Bless you for your encouragement.
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Old 12-25-2008, 08:36 AM #13
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Heart

Quote:
Originally Posted by loretta jewell View Post
Hi Lori Lee,

I can 'hear' yoru pain and depression in your words. When a major change or loss happens in our life our reaction to it can last for various lengths of time. When my parents died at a young age, I just couldn't adjust, so found a wonderful counselor to help me thru. Then when I couldn't adjust to RSD, again I found a psychiatrist to help me thru that awful deep depression. I sense that is where you are now. The depression isn't just the loss and change, but there is a physical change in our brain, called the Limbic system. It is altered by the RSD and causes the depression. I've been seeing my pschy. for 4-5 years now. Cymbalta is working well for me. low dose 60 mg. What has helped most is my determination to fight and keep a calm system, which in turn is less pain. i troy to look at things is a positive, grateful way. Terrible things happen to wonderful peoplle,and it is so encouraging to see them do well. I went thru a very low low time too, but I try to call friends to encourage them, love flowers in the house, scented candles, scented lotions, and scrubs, polish my nails, exercise, swim, play with my kitty, watch a funny movie, look at old photo albums of family vacations, write letters to family and friends. It's tough. I also miss snow skiing. my daughter and I and our friends made many fun trips in Oregon. Mt Batchelor, Mt Hood. My husband would come too a couple times a year and would have the fire going when we got home. We had a ski boat and water skied a lot-ten minutes from the house. My daughter and I played tennis about 5 days a week. So much fun. We traveled as a family several times a year. self-employed

Like yourself, my RSD came the day following surgery. swollen arm, then frozen shoulder. It took months of therapy to get range of motion back, then went to the other shoulder. more pt I think our daughter was about 17. I don't say this to discourage you, but shortly after the second frozen shoulder, I was water skiing and my hand was frozen. Misdiagnosedd with RA flew back to Oregon and diagnosed RSD. We had moved to Arizona for college, went thru therapy to get most of hand back. Never regret all the painful therapy. now can use both arms and most of left hand. I have full body RSD 12 years now. In between the two frozen shoulders we went to Europe twice. which was grateful for. As it spread, I was very limited and had to stop traveling. I'm hoping to start up again. So don't give up please Journel if you need to, or reach out to us on the forum so we can encourage you. Choose carefully, whom you speak with about your RSD. Many people or friends care, but some tend to withdraw witih discussions of illness and such. I assume you know what journeling is, writing down your true feelings, without reservations, then burn it if you need to

This can be a serious disorder. I almost died when blood pressure dropped to 60/40 was going to go to Maui the next day, but ended up in ICU instead. The last couple days have had low blood pressure again. It is caused by the para sympathetic nervous system. the sympathetic nervous system cause high blood pressure. I'm on two different meds for that.I take Lorazepm 2 mg. for anti-anxiety 3x day to keep calm. Vicodin for pain. Was on 3200 neurotin and then lyrica and now down to 100 mg. lyrica. Hope to go off soon.So far no electric shocks, jolts, spasms, etc I feel I'm progressing, I stretch and have full use of arms and feet andall of right hand and partial left hand. I did have problemds with toes curling, but Dr. gave me exercising while swimming and got the toes to touch the ground again.

Financially, we have spent a love of savings, but our daughter and son in law thru college.I can't work much. memoroy is bad. We own a coffee company, We bought it when we moved to AZ. thripled it, but then health went down. I guess what I'm trying to say is, you may want to think about the statuate of limitations on filing for damages.

I didn't file on my breast surgery, and next day my shoulder was frozen. 100 treatments. plus I paid for 100 massage therapy. the ovef to other shoulder, Our insurance paid for treatment and I paid for Massage therapy. I did the desensitizing at home too. and am GLAD I did! Between the two shoulders we went to Greece and also a 7 day cruise thru the greek islands. WONDERFUL I'm so glad I did the time and pain The wonderful memories with friends and family. Then our daughters wedding. So fun. I know for sure, the stretching exercising swimming kept me moving and had the joy. Please keep trying.

My husband has interviewed two men to go out and sell coffee. I can't do that anymore. If they can, maybe I can get some HBOT treatment.the 100)% oxygen and the the oxygen toends of arms and legs.I would be so gratefultomore and have more energy

On our bad and painful days, it's hard not give up and just stay in bed, but I want to help others ah travel more.

I guess one more thing I want to say to you Lora Lee is, if you feel you have a case on your surgery, it's worth a visit to an attorney and see if you have a case. It's unbelieveable how much allthese medical bills cost and therapy. If there was neglicence, you deserve commensation. If it is something you are going to pursue, sometimes, it's best to go out of town and keep it quiet.

My father pursued my mothers death and was 100% settlement

I had very good evidence for my surgeons blunders, but decided not to pursue due to emotional costs Medical costs are unbelievable and keep going up, so you need to decide on that are of your life......Hope all works out well. and goes wellfor you. I truly underand the loss of physical sports. I loved itSwimming is so great, water auerobics, Please know I think of you often and hope you continue to stregthen yoursel

Our daughter and son in law just moved in with us.He is a American Airline Pilot and just moved backfrom chicago I'm doing so much better here thatn in Oregon Please let us know how you are doing? I'm checking into the HBOT treatment and will let you know whenI find out more. Take care, Loretta Jewell
The "reply" on the next page is for you. What you said had made me feel so much better-I can't even say how much.
Lori Lee
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Old 12-27-2008, 04:49 AM #14
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Hi Lori Lee,

I forgot to mention about desensetizing. In therapy, I had little buckets of rice, cotton balls, coffee grounds, beans,popcorn, just various textures, dip your fingers or toes into each buck and then move on to next bucket, rubber balls, rubber bands, The various textures, get your skin used to various textures. Massage Therapy, does the same thing, adding essential oils. These all play a part of adjusting your skin to various textures and smells. Violet is a relaxing soothing fragrance, music, happy memories from childhood, photo albums, funny movies, writing cards to good friends and family, makes them feel good as well as ourselves.

I really miss skiing and tennis, Snow and water,We still have our boat. It took me a long time to miss my sports, but I now am just grateful to have been able to have done so much. There is a book entitled, "You can't Afford the Luxury of a Negative Thought" by Peter McWillliams he also co-authored the 5 steps of grieving. Grief, or loss of our health is a huge adjustment that takes time to heal.

Have you thought of sitting down with your children, maybe individually, due to their age difference. zmaybe the schools have ski programs.Maybe other mothers are willing to take them in with their children. What state do you live in?

My heart goes out to you. Please keep in touch and let us know how you are doing? We really care! Loretta Jewell
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Old 12-31-2008, 04:47 PM #15
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Default there is hope, i am in FULL remission,

Quote:
Originally Posted by llrn7470 View Post
I've been scouring the pages of the net trying to find an answer to a somewhat dicey question. What percentage of patient's diagnosed with RSD ever get "cured?" How many are able to go back to their original job? Is it even worth it for me to do all of that "desensitization" at home, keep up my PT at home because I can't even afford the copay, take all of these drugs and do all of these procedures when it really is "never going to happen?" I'm really early in my diagnosis, and everyone says that those have the best chance (diagnosed 10/18/08). But what does that really mean? This is so very disillusioning to me-maybe made worse from the holidays, maybe not. Maybe I'm just depressed more than previously. I am just so deeply unhappy and angry. Anyone actually know what the chances are?
Lori Lee
Hi
I suffered rsd for 12 years plus a lot more.
I am completely RSD free; I tried a lot of treatments all over Canada & the US. Please continue to hope and fight, you will recover. I am new to this site my email was taken when I signed in, and you may email me at home if you wish for any information you may find helpful.
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