Quote:
Originally Posted by CZZ74
Hi, I hope this finds everyone well this Sunday morning. It is beautiful in Orlando. Cold, by our standards, in the 50"s a real treat and a nice break from the afternoon thunderstorms that cause us all so much trouble.
My interest in starting this thread is that people are always asking me "well what happens Next". Whats the long term prognosis? We are the answers to those questions. Just as when some one asks me what are the long term effects of so much ketamine. We are the test subjects that will be reporting that.
I'm hoping to find out if there are any similarities, common ground, especially in the area of the pain . How many of the original components are still with you, the sweating, the outward signs of red molting or blue, thin limbs or swollen limbs. And all of the above questions following use of your affected area.
Hi CZ, Thank you for asking the questions, the answers we will all learn from and be able to learn more, especially those with less time, with still lots of questions.
Mine started in 1996 with left breast surgery and under arm for two benign tumors. Left arm swelled double size the next day. Dr. left for vacation, so his office withdrew the green fluid 2-or 3 days. When he came back my shoulder was frozen bad. Sent me to Rehab Dr. who oversaw physical therapy- about 100 treatments to get range of motion. I refused surgery to break it about half way thru. I paid for massage therapy just be going into pt. That help soften and stretch arm. Extremely painful, being strapped down and took pain med before treatment. No diagnosis. We moved across country to Arizona and before we left pt. said it might move over to the other shoulder and IT DID. More therapy No diagnosis. I was basically in remission inbetween problems. Then in Sept 2000 I was water skiing and felt a deep pull in nerve of left hand, immediate swelling and pain and discolored.
I am hoping that those of us with RSD for 5 years or more would feel like helping me complete a small study of sorts. In the end, i think it might be helpful for all of us, and helpful to those that are not here yet.
I am interested in general and specific knowledge of how you are coping now. Which are the predominate features that dominate know. what type of pain. How consistent. What has changed in terms of your pain form previous years.
How active are you able to be, and if so what are the consequences if you go over that safe active time?
How weak are your affected limbs?
Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.
Meds, whats working- have your meds increased or decreased.
Ability to work?
And if not is it due to meds as well as pain from RSD?
Please add as many elements as you can think of that I have not mentioned. I am going to post on braintalk too. I will post the results together. I hoping to see some type of pattern. Thank you so much in advance if you feel like sharing some of your experiences. sincerely, cz
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Hi CZ,
Thank you for taking the time to inquire of our different paths in the life of RSD. My name is Loretta and I got RSD the day following left breast surgery and arm pit removal of 2 benign tumors in 1996. The next day my arm was doubled in size. My Dr. was on vacation , so his office removed the green liquid for 2-3 days When he came back, my left shoulder was completely frozen. Sent to a Rehab. Dr. that oversaw physical therapy. About 100 treatments got most all range of motion back. I paid for an hour massage therapy just before pt so as to warm and stretch my arm. Very painful. I had shooting pains thru by back, shoulders, stabbing pains.About half way thru, they sent me to ortho. surgeon and he wanted to break the shoulder, I said no thank you and stayed the slow course. So glad no surgery, didn't even know then it was rsd. Before we moved to Arizona, pt told me it might move to other shoulder. IT did. more therapy. After each shoulder problem, I really went into remission No pain meds. Just tookk them during the torture pt.
Sept 2000 was water skiing and felt a pull in left hand. painful swollen and went right away to Dr. He said it was Rheumatoid Arthritis, even though the tests said NO. Put me on some meds, I felt something was really wrong and not RA so I flew to a Sports Injury Group in Eugene Oregon and Hand Dr recognized RSD in 1 minute, followed up by tests at the hospital.
Starated physical therapy the next day and then came back to AZ and found a good hand Dr. and pt. Didn't have blocks, it had been over 4 years undiagnosed or rather misdiagnosed., really both.
My hand was blue, red, mottled and extremely sensitive to touch, sweaty, and shiny, and red hot in touch and couldn't use my fingers. frozen straight. Torture therapy and hand is like a claw, but desesitized and can cut my own food now etc. Years ago, this used to be called hand-shoulder syndrome.
A few months later, my right hand was turning color and atrophy, sweaty and shiny. From the beginning, I had sweat problems, and sort of like panic attacks emotionally, but didn't understand that, as never happened before.
Then moved to both feet and legs, spine, lower back, neck, bad headaches, trigeminal nerve disorder, fibromyalgia, Both arms are now deforming elbows are bowing out. At one time toes started curling and didn't touch floor, Dr. gave me pool exercises and I didn't them dailey and now can touch the floor. I read the water needs to be 86 degrees. Cold water is not good for our bodies.
Now I have the burning limbs and also ice cold, can't warm up limbs.
I see a psychiatrist, neurologist, pharmacologist all in one, and he managaes my pain, He is conservative, but sensitive, has experience. Yes, counseling has really helped me. I go once a month for an hour. I also had 2 years when my parents died.
Meds:I take Vicodin 4/500 2 pills 3x day, Lorazepam 2 mg. 3 times a day. 2 blood pressure meds Diovan 160 1x, Toprol xl 50 mg, (used to take 100)
Was on Neurotin 3200 mg. to get the jerks, electric jolts, spasms, etc to stop. now changed to Lyrica 100 mg. 3x, but having issue with lungs, so probably will go off next week when I see my Dr. Ambie Cr. 25 mg for sleep
Cymbalta 60 mg for anti-depressant, used to take paxil cr. and wellbutrin xl double dosed. I hated the nuerotin,tired all the time, memory bad, like the cymbalta, had no emotion on the other two meds. At least I can cry now when I need too, big difference and I think healthier.
I have skin lesions, red, itchy, and turns to brownish moles- a nightmare.
About 3 years ago, I woke up and stumbled into the door, passed out. My husband was in his home office. I woke up over an hour later- got his attention and he called 911. The medic, couldn't get a pulse, and told my husband I was dead. I was going in and out of conscienceness. Blood pressure was 60/40 not good. Spent 4 days in ice !6K in tests alone, My blood pressure goes up and down at times so I take it nearly every day. Last night it was 160/109 pulse 91 after being sick with stomach flu and getting a really bad headache. I think it was higher than that, because I didn't think to take it until after an hour of my head almost exploding.
Pain- always, up and down, grateful for the vicodin and hope never to have to go higher. Lorazepam helps a lot to keep calm. I use music, cd's scented candles, reading, meditating. Looking at photo albums of lots of happy trips and times. We have one daughter and we did so much together as a family. Water ski, Snow Ski, Tennis fanatics, besides playing almost every day, we went to 12 days of us open both day and night matches. Swimming, 10K and health club work outs. Oh and horseback riding weekly.
After going on Cymbalta, somehow I passed that deep dark depression I had been in for so so so long. I concentrate on gratefulness instead of what I can't do anymore. I like to talk on phone to close friends, and write cards.
I love this forum, and makes me accept where I am and have compassion for others. I'm 60 now, but would still be playing tennis and water skiing if I could
Mobility: I am in bed most days. Walk around the house. Don't drive very much-have to wait 4 hours after meds, Can't walk a lot, feet and lower back get tired and hurt. Dont need a cane. Ankles hurt, swollen. Hurts to type this long, I have a microwave warmed long bean bag head with velcro straps to keep it in place. Also works good in spine and lower back and warming up, when I'm in the cold bone chilled state.
I talk to a good friends with full body rsd. Image she has had it longer and has 5 children young children. Tough
Support: My husband is very supportive, has gone to Dr. with me and well as our daughter. They both have done researach on RSD. She knows too much, because she is a court reporter and has dealt with rsd in court.
She is married 8 years and we love her husband. They are both helpful, helping with house cleaning, yard, and picking up dry cleaning, etc. My husband gets my meds and grocery shops.
We own a business, but i can't work any more in it. I really miss that, but just can't do it. Financially, this has hurt us pretty good.
Well CZ, just ask if you would like more info. Hope this helps others and isn't too discouraging. I wish I knew then what I know now-could have planned better for what's coming. Remissions is a precious thing. Earlier treatment the better. Physical therapy is very hard and tiring, but I am very glad I can use both arms and most of my left hand, the desensitizing was so important. I had a tens unit and it helped while my hand was so bad, but don't use it anymore.
Sleep: have problems sleeping. Many nights can't get to sleep till 3 or 4 am.
CZ thanks again, take care Loretta Jewell
