Questions for those with RSD 5 years or more

CZZ74 · 11-12-2008, 05:47 AM

thanks for the replies, I am encourage to day to see so many more responses. I hope they will keep coming. It is interesting to see how the meds are being managed and what the alternatives are. Such as Diana's hbot. Im not sure if you still require Meds Diania, I know you have your own chamber, something I too hope to have one day. Sorry for the continued pain form everyone but thank you so mcuh for continuing to answer this simple survery, Sincerelly, cz

loretta · 11-13-2008, 04:22 AM

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

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

CZZ74 · 11-13-2008, 07:47 AM

Quote:

Originally Posted by Loretta jewell

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 Thur by back, shoulders, stabbing pains.About half way Thur, 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 took 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.
Starred 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 desensitized 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 daily 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 manages 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 conciseness. 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. Don't 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 research 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

Loretta, thank you so much for replying. Your journey has been a dreadful one. The attitude you have been able to arrive with at this point is truly amazing to me. I am so happy you wrote,especially given the pain in your arms. When you closed your letter you stated close to what my purpose is of this informal survey, you said" I wish I knew then what I know now-could have planned better for what is coming". I hope this will help all of those just beginning to understand RSD, those making major financial decisions on forms of treatment, and how to prepare for how life really becomes. As I said I Will be posting a summary from all replies from both sites. Again Loretta, I can not thank you enough, My warmest thoughts to you and prayers, CZ

CZZ74 · 11-13-2008, 09:01 AM

Quote:

Originally Posted by sherimac

I was originally diagnosed in 1990 or 1991, after a knee injury and DVT from immobilizer. Initially effected my right leg and knee, I spent 4 yrs in pt, learned to walk again. The pain was incredible, it was burning, electric cuurent and sometimes felt like I was being jabbed with a hot poker. It swelled, turned pretty colors and I couldn't stand anything touching it. I went through many doctors trying to get relief, did Phentolamine blocks but didn't get enough relief according to pain doc to continue, tried lots of meds, Ultram, Neurontin, Klonipin, Nortriptylene, Trazadone, and every anti-inflammatory they could prescribe, but no one wanted to prescribe any real pain meds. Eventually I stopped everything and it went into remission for about 8 years, then last summer it came roaring back in my leg after another DVT, this time it has spread to hips and spine and lucky me I fell in August and fractured my scaphoid in wrist and am having problems with the rsd spreading there, it is currently burning some, though not as bad or often as my leg, it is mostly the temperature change and color change, my hand has been cold and I can't seem to get it and keep it warm. My skin is very dry all over my body, and is shiny on my leg, I too have experienced some hair loss on my leg. I am currently in OT for my hand and thankfully my PCP is willing to prescribe pain meds for me. I have been taking Skelaxin 800mg and Norco 7.5/325 for over a year, may need to increase the Norco. I have been trying to see a Neuro, but everytime they hear rsd they won't see me. I am working full time in Social Services, thankfully I work for a very flexible agency and it allows me to come and go, set my own hours and work from home when I need to, I just started back in the field last month, prior to that I had worked for 1 year for SSA as Medical Disability Examiner, what a nightmare, way too stressful which aggravated the rsd. I didn't have any flexibility there it was awful, now I can't believe I worked like that. I do the best I can, I use my cane when I need to and rest a lot. There is so much I can't do anymore, as standing and walking are so difficult. I'd like to look into SCS if I could find someone in the Orlando area willing to talk to me about it. Anyway I think I have tried just about everything, with little or no real success, even tried acupuncture and Tens unit which really set me off. Somehow I keep going despite the fact my doctor told me last year to go back on SSD, I was on it for 7 years prior to the remission, it took me 3 years to get and I just don't want to deal with it and wait that long again, so I choose to work, somehow I am doing it because I refuse to let rsd get the better of me.

Sherimac,
This is so helpful, you are one of the first people that i have heard fro that has been able to continue working.It seems as though you have been able to make you job work for you best you can the standing is very diffucult for me, anything over 20 minutes causing a severe spinal flare in the thoraic area. Thank you so much for replying. Sincerelly, Cz

CZZ74 · 11-13-2008, 09:07 AM

Quote:

Originally Posted by Imahotep

I got it in mid-'98 but at first it was nothing of note. I was strong as a bull and as active as a small herd and RSD was just an annoying pain in my hand. But it kept getting just a little worse and started causing fits for my digestion since this pain was so stressfull for me. After a time I started realizing the pain was associated with usage. If I took it easy with the hand then the pain was better and digestion OK. It was all downhill from there.
Over time everything started falling apart and my life just started imploding as I had to give up one thing after another. I still worked for a long time but used one hand almost exclusively. Eventually the symptoms and pain expanded and got worse and working became most problematic. I wasn't diagnosed until mid-'03 however. The doctor told me that the prognosis wasn't as bad as I might think and that most patients eventually get on the right combination of drugs that they can function.

My symptoms have been far too numerous to even attempt to list and there are some new ones that are in themselves disabling but I'm still active for up to a few hours per day. I still have some strenght on my right side and can be very productive when I work. I have nearly as many bad days as good ones and I'm finally learning what will set me off so don't get the most severe symptoms and pain as often as I used to. Memory was a problem early on but was probably caused by medication. It seems to be returning a little but might not be caused by the RSD or the meds this time.

I try to go out every morning but only make it four or five days a week. On good days I'll swim and try to maintain a schedule with this as much as possible.

I do a lot of reading and surfing now and find the pyramids extremely fascinating. This interest is expanding a little to include more early history and late prehistory. I take care of my mom's house and all my own chores. There's not much social life left but there's still family.

The biggest problem recently tends to be stress and, in a way, it long has been. Depakote keeps me on an even keel and helps with the pain a little. Neurontin helps with the pain a lot. Tizanidine allows me to sleep because without it fine muscle spasms keep me awake. Seroquel helps me to sleep. Norvasc keeps the blood pressure down even when pain levels are high. Keeping the blood pressure down prevents headaches and other problems. I have a few meds I take in the event of emergency. Some of my specific symptoms are overwhelming. I also sometimes need additional help getting to sleep and get side effects from too much seroquel.

Pain killers never really worked for me. Methadone helped me not care about the pain but it didn't really ease it. Even a large quantity of morphine just got me to quit screaming though the pain was little different. I got this when I wakened from an unrelated operation. My hand hurt so badly that I woke up to my own groans and it got worse from there.

The worst thing about this is the feeling of powerlessness and the lack of control over anything. I was once almost fearless and micromanaged my world and now I'm afraid of the dark and can hardly manage what little is left of it. I suppose the best thing is that it has slowed me down so I can appreciate parts that were invisible to me in the past. My greatest hope is that someday I can get off the neurontin since it affects my mind quite a bit.

Dear Ima, thank you for sharing your struggles, I can so relate to the feelings of powelessness and lackk of control. It to me is one of the most devasting aspecsts.The pain and time management does not leave much room for joy, i think in the end thhhis is our biggest struggle. I enjoyed your sharing of the history channel. Im determined to have something to share when I do recieve a visotor- only problem i have is memory and retelling the interseting parts. Thank you again for particiapating. I am looking foward to collecting all and posting. Sincerely, cZ

sherimac · 11-13-2008, 06:49 PM

Quote:

Originally Posted by CZZ74

Sherimac,
This is so helpful, you are one of the first people that i have heard fro that has been able to continue working.It seems as though you have been able to make you job work for you best you can the standing is very diffucult for me, anything over 20 minutes causing a severe spinal flare in the thoraic area. Thank you so much for replying. Sincerelly, Cz

I work because I have to, for my own sanity. I was home 7 years on disability and it was aweful, there is just so many Danielle Steele novels I can handle or so much daytime TV, LOL. I also have to work because my husband hasn't had steady employment since he lost his business in 2004. He is currently out on medical leave, had shoulder surgery in September after a motorcycle accident. If I didn't work we wouldn' eat. I just keep going as best I can. I am in pain 24/7 my back, hips and leg hurt all the time, it is hard to climb stairs, walk, stand or even sit sometimes. I am constantly moving and changing positions. I come home and go to bed most nights and spend a lot of the weekends in bed, that is how I am able to work. Lots of flexibility.

Cake · 11-16-2008, 06:58 PM

My RSD started in November 2000. So I'm just on the 8 year mark now for my right arm and hand, and I'm nearly at the 3 year mark for my leg and foot.

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.
My arm doesn't go red when it's touched now, I don't have big issues with allodynia since my 1st ketamine treatment got rid of that in 2004. Still have swelling and purply/mottled hand and foot, but not the whole limb so much. After use? they're worse.

Which are the predominate features that dominate now. Burning pain, swelling, purply colour change, bone pain, stiffness, weakness, sharp stinging pain.

What has changed in terms of your pain form previous years. I'm worse now in terms of mobility, movement, dependance, fatigue, pain levels, coping ability, psychologically, (so EVERY ASPECT!) than I have been in the whole 8 years, except I have more use of my hand than I had before. Also insomnia is a big issue now, I average 2-3 hours sleep a night.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
I can't be very active at all. I worked out my base and peak times for doing things, and for instance the amount of time I can stand with weight both even on my legs is just 20 seconds. At my lowest pain level, I can walk around the house with a mild limp. At my worst, I can't put my foot on the ground at all, let alone stand on it. I spend most of my time almost at my peak level, with maybe a few hours in 3 days total where I can walk with just a mild limp. I have fairly good use of my hand though, but thats due to a lot of hard work for a lot of years.

How weak are your affected limbs?
See above for my leg. I can hold a 2ltr bottle of milk with my right hand for about 10 seconds before it starts to shake and I have to let go, but at least I can hold it!

Which therapy modalities have helped the most? Definitely physio.I've gone from having no use of my hand, and a totally frozen shoulder, to having good use of my hand (mostly), being able to write with my right hand again. My shoulder is starting to screw up again now, but its been fine for a few years. I also still see a pain psych, which I think is invaluable.

Meds, whats working- have your meds increased or decreased.
Meds have increased. Almost run out of available medications to try, as I've tried everything. At the moment, I'm on 40mg oxycontin a day, 900mg neurontin, 75mg endep and 50mg baclofen, plus vitamins etc. I've had other times where I've been on this much, and other times where just the endep and baclofen have been enough. I know these all help right now as I just had a week without the oxy and it was a nightmare, but I'm still not quite there. I'm still in a lot of pain, a lot of the day.

Ability to work?
Me work?! My husband can't even work! Well, he does 2 days a week because we need the money and he needs to get out of the house, but he sets things up for me so I don't have to do much on those days, and he catches up with it all when he comes home. Right now, I need him home all the time to look after me and Hannah. It's hard doing everything when you're on crutches 24/7- you can't even carry a drink into another room. I have to put things on the high chair tray and push it from room to room! lol I'm hoping that one day I'll be able to work again. That's why I'm now doing a Business Administation course from home, and last year completed a Human Resources Management course. Hopefully one day I can put all this learning to use- providing they hurry up and cure us!

Hope that helps!
x Kate

CZZ74 · 11-20-2008, 06:41 AM

Quote:

Originally Posted by Cake

My RSD started in November 2000. So I'm just on the 8 year mark now for my right arm and hand, and I'm nearly at the 3 year mark for my leg and foot.

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.
My arm doesn't go red when it's touched now, I don't have big issues with allodynia since my 1st ketamine treatment got rid of that in 2004. Still have swelling and purply/mottled hand and foot, but not the whole limb so much. After use? they're worse.

Which are the predominate features that dominate now. Burning pain, swelling, purply colour change, bone pain, stiffness, weakness, sharp stinging pain.

What has changed in terms of your pain form previous years. I'm worse now in terms of mobility, movement, dependance, fatigue, pain levels, coping ability, psychologically, (so EVERY ASPECT!) than I have been in the whole 8 years, except I have more use of my hand than I had before. Also insomnia is a big issue now, I average 2-3 hours sleep a night.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
I can't be very active at all. I worked out my base and peak times for doing things, and for instance the amount of time I can stand with weight both even on my legs is just 20 seconds. At my lowest pain level, I can walk around the house with a mild limp. At my worst, I can't put my foot on the ground at all, let alone stand on it. I spend most of my time almost at my peak level, with maybe a few hours in 3 days total where I can walk with just a mild limp. I have fairly good use of my hand though, but thats due to a lot of hard work for a lot of years.

How weak are your affected limbs?
See above for my leg. I can hold a 2ltr bottle of milk with my right hand for about 10 seconds before it starts to shake and I have to let go, but at least I can hold it!

Which therapy modalities have helped the most? Definitely physio.I've gone from having no use of my hand, and a totally frozen shoulder, to having good use of my hand (mostly), being able to write with my right hand again. My shoulder is starting to screw up again now, but its been fine for a few years. I also still see a pain psych, which I think is invaluable.

Meds, whats working- have your meds increased or decreased.
Meds have increased. Almost run out of available medications to try, as I've tried everything. At the moment, I'm on 40mg oxycontin a day, 900mg neurontin, 75mg endep and 50mg baclofen, plus vitamins etc. I've had other times where I've been on this much, and other times where just the endep and baclofen have been enough. I know these all help right now as I just had a week without the oxy and it was a nightmare, but I'm still not quite there. I'm still in a lot of pain, a lot of the day.

Ability to work?
Me work?! My husband can't even work! Well, he does 2 days a week because we need the money and he needs to get out of the house, but he sets things up for me so I don't have to do much on those days, and he catches up with it all when he comes home. Right now, I need him home all the time to look after me and Hannah. It's hard doing everything when you're on crutches 24/7- you can't even carry a drink into another room. I have to put things on the high chair tray and push it from room to room! lol I'm hoping that one day I'll be able to work again. That's why I'm now doing a Business Administation course from home, and last year completed a Human Resources Management course. Hopefully one day I can put all this learning to use- providing they hurry up and cure us!

Hope that helps!
x Kate

Cake, thank you so much, yes this helps allot. Sorry I had a few bad days there- you brought up some issues I wish i had thought to include such as the insomnia and the amount of strength you do have . I too am very successful with baclofen, seems as though allot of people are.I'm sorry for all the pain you are still in as I am for us all. thank you for participating in this -I did want to ask if you continue ketamine treatments. They too were very successful for me with the alloydina primely. Thank you again so much, Cake, Sincerely, CZ

GalenaFaolan · 11-20-2008, 08:04 PM

Quote:

Cake, thank you so much, yes this helps allot. Sorry I had a few bad days there- you brought up some issues I wish i had thought to include such as the insomnia and the amount of strength you do have.

I didn't think of those either! LOL I can answer them now though since it was brought up.

I have a lot of problems sleeping. I generally don't go to bed until between 3 and 4 am. If I'm in bed by 3am it's a early night!

Usually it's later and I get serious insomnia when that time of month rolls around. The week before I can't seem to get tired. I never had that problem before rsd. When I do sleep it's in fits and starts of course so I always feel tired. Then it catches up with me and I'll get a night or 2 of unbroken sleep because I'm so exhausted and my body shuts down to protect itself.

As for the strength issue, all 4 limbs are much weaker than they were pre-rsd. I was a cook and on a daily basis I hefted 20-30lb boxes of egg wash,10+ lb boxes of bacon,sausage and other meats, plus lots of other heavy stuff. LOL My left knee/lower leg/foot was where it started and that leg is the one that will begin jerking first and more often than any other limb. It's definitely weaker than anything else. Right leg is weak and I can't lift much of anything with my arms either. Some days lifting a gallon of milk feels like trying to life a 20lb weight.

Hugs,

Karen

CZZ74 · 11-29-2008, 12:32 AM

Hi Everyone,
I look forward to summarizing all and comparing what is available to us in literature. Again, thank everyone enough for taking the time to answer thank you so much. CZ

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