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.

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,

I haven't had RSD for over 5 years (i've had it nearly 2 years) but I just wanted to say that that is a great idea and I too will probably find the answers very useful.

Take care and I hope you're well

Alison

hi,
Well, unfortunatly I fit the bill. I was originally diagnosed in November 1999 with RSD in my left foot. By around Feb 2000 it had moved up and encompassed my entire left leg, and from then till late 2001 it spread to include mmy right leg as well. So now have it in both my legs toes to hips. I think the easiest way for me is to leave the question your asking then my answer after it. so, here we go.

I am interested in general and specific knowledge of how you are coping now.
Well, day by day. having more bad ones than good, never know what kind of day will be. pain meds are both a life saver as well as a curse.

Which are the predominate features that dominate know.
The swelling, bruising, hypersensitivity to everything.

what type of pain.
Burning, numbness which I think is the worst.

How consistent.
Think the beter question is how often do u not have pain. I am in constant pain, if I can go a day with my pain level below a 7 I am thrilled!!!

What has changed in terms of your pain form previous years.
Think I have gotten so use to it, that it is at times easier to block it to a point. Definatly does require me to pace myself more, as on that one good day, if do too much, Ill be down for 4, rather than if say, ok, today is a good day, Im gonna try to do 2 loads of laundry and stop there. Then may be able to do a little something else the next day. Where, before, on a good day, I would be like yeahh Im gonna steam clean my carpets, clean my whole house and then be down the next week.

How active are you able to be, and if so what are the consequences if you go over that safe active time?
Fairly in active anymore. I use to do Rennisance faires and run a kitchen for a group of anywhere from oh, 6 to 26 people, spend 2 days prep cooking and then finish it so could eat that weekend, 3 meals a day. Now, can't do 2 faire weekends in a row, can't do kitchen anymore. Havent run a kitchen full time now in about 3 years, towards stopping it, It would take me oh, at least a week to recoup from a whole weekend usually more like 2 weeks.

How weak are your affected limbs?
on a scale from 1 to 10, 10 being not able to stay up, a good day is about a 6, a bad day, of course a9 or 10 which are those that stay inbed except to go to the bathroom.

Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.
use meditation alot, more recently which really does make me feel great. Allows me to not take the sleeping meds all the time and even though may only sleep 4 hrs, feel like slept 10.

Meds, whats working- have your meds increased or decreased.
Oh, definatly increased. mainly because of tollerances building up and eventually having to change. Baclofen has been a life saver fr the spasms. had one so bad 3 months ago, that fell and actually the non spasming foot ended up breaking and dislocating both ankles, the tib in 3 spots and the fib in 2.

Ability to work?
Dr.s wanted me to stop after a major car accident in 2002 August, but as a single mom with a child in high school and nothing from there dad, had to work. pushed but had to accept in Oct. 03 was no longer possible. because of the pain, the pain meds side effects unable to work when would take enough to take the pain to a tollerable level, as well as just couldnt sit at a desk anymore, spend most of time laying in bed or on the couch with legs up.

And if not is it due to meds as well as pain from RSD?
it's was a combination of both as well as the more I would push myself, the worst seem to get.

Hope these help, if need me to elaborate more on something let me know.

Blessed Be
Deb

RSD is not who we are, but only a part of who we are, what we are and have to be are fighters and survivors
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[/QUOTE]

[/QUOTE]


Deb, this is exactly what I am seeking thank you so so much, I am so appreciative. I will write more to you later. I am saddened at the same time. Im sure you understand, you and I are in the same place. Thank you I hope we hear from more members, so I can put this together, thank you so so much, CZ

I answered already on the other board but just so the people who only come here can see my answers, I'm re-posting here CZ.


I've had rsd for 5 1/2 yrs now. Next Feb will be 6 yrs. When it began I had severe swelling from the knee down and foot of my left leg. I was on crutches for about 2 months, maybe a bit more, went to pt, learned to walk again and the swelling disappeared. Since then I've only had minor swelling in my ankles. Oh, guess I should mention now that it spread to all 4 limbs in 11 months.

Color was a bluish/purplish that got darker the longer my legs were down. Still gets that way, haven't noticed that it's any worse but definitely not any better! My arms didn't have any color changes until about a yr and a half ago. You notice the change only if my arms are hanging by my side.

My feet,legs and knees were always very cold to the touch and have remained so. My hands and arms, well hands and elbows are cold to the touch and arms themselves can feel cool but not as cold as the rest. I also have it in my shoulders,hips and part of my upper and lower back. I don't notice any temp change to the skin in those areas.

Hair loss was there on legs and my head from the start. Haven't lost any more on my legs, but the hair loss on my head is worse now then it was then. Within a few months the skin on my legs became shiny, thin and dry. Now the dryness is much worse and my whole body has very dry skin, even those areas not having active rsd in them. I've always had oily skin. The bottoms of my feet are also worse than before with drier and also a bit thicker skin.

Sweating at the start wasn't a problem really. I got hot flashes and around that time of the month my legs would sweat at night. Now, still have hot flashes and sweat day or night all over not just the legs anymore! LOL

Very soon after it started my toenails all but quit growing. I only had to clip them once every 2 months. It's still the same. My fingernails had no change. None of my nails are either harder or softer than they were before rsd.

I didn't feel the first "burn" until between 4 and 6 months after it all began. Even so I never burned much at all. At this point I do burn more all over but not as much as others I've talked to. I guess an average "burn rate" would be at least one episode every 3-4 days or so.

Sensitivity.....was only to air on my legs at the start. The air sensitivity on my arms began about 2 1/2 years ago and is worse now for both arms and legs. Even the slightest bit of air hurts. I didn't develop any touch sensitivity to arms or legs until about 2 yrs ago. It's especially bad when my pain is high. My whole body is very touch sensitive, even my head and scalp. Things like noise, has always bothered me but is definitely much worse now. Vibration wasn't an issue for the first 3 yrs but now I can't stand riding in a car at all unless I absolutely have to for going to the doc. It just hurts too much.

Leg numbness became an issue in the last yr and a half. I have off and on numbness in arms

I cope now the same way I have from the beginning. I keep as busy as I can, find something to laugh about every day even when I don't feel much like laughing. I meditated before and it became more important to keep doing it after. It helps by keeping me calm and helping my mind stay focused on something else besides the pain.

The pain itself was horrific to start with. Even with my high threshold for pain it overwhelmed me. None of the wc docs would give me any meds so it just made it worse. By the end of the 1st year my body had adjusted to the level of pain I felt. It was still bad but not as horrific, even with no meds. Now at 5 1/2 yrs with pain med it's lower. My good days average about a 3-4 and bad days about a 7-8. Of course pain is subjective to each of us because my 4 is someone else's 8 or 9. The feeling of it I'd say definitely changed. I used to describe it as severe, unrelenting, crushing, sharp, stabbing, shooting. Now it's still sharp, stabbing and shooting but not crushing. I still feel it bone deep at times. I feel more muscle pain now than then.

I have more muscle spasms at times now than in the beginning but on the baclofen I have much less uncontrollable jerking of my limbs. My legs were very bad for the first 2 yrs.

Not very active. I can clean house a bit at a time. If I do too much it results in more muscle spasms, uncontrollable limb jerking and a higher pain level for 2-3 days, unable to do anything other than lay on the couch and take meds.

Much weaker than they used to be. When it started I only had about 10-20% weakness and now it's about 70-80% in my legs. My arms, maybe 5% and hasn't changed.

I had land based pt 1st time for 6 sessions along with water pt. That got me walking on my own again. Had land pt 2nd time for 10 sessions before she dismissed me because it was only making me worse. I tried a TENS and it was the most painful thing I have ever experienced! I'd have to say water pt was the best and would've been better if the water had been warm. LOL

I take generic vicodin, 10/325. I had taken 7.5/325 for a little over 2 years and increased it this past Jan. I take baclofen 10mg, was 2 x's a day and increased to 3 x's a day last month. I began taking Lyrica 75mg in Jan and went up to 150mg once a day over the next few months. I took it to hopefully help the leg numbness. I'm now back down to 75mg once a day because it made the numbness 10 times worse. It hasn't gotten any better even though I've decreased the dosage. I think it's permanent now.

I haven't worked since I was hurt in Feb 2003 and will never work again. It's all due to the rsd. I can't stand or walk for long. I was a cook and that's a stand/walk job. Oh...I did work for about a week when wc MADE me a few months after the rsd started. They didn't try that one again! LOL

I think I covered everything. If you want to clarify something or need more info, don't hesitate to ask!

Hugs,

Karen

Added to original post,CZ asked about major treatments,such as block,elec shock therapy,etc:

I was on wc so wasn't given much in the way of treatment. LOL

I was finally given the go ahead to get one block done. It was done May of 2004, 1 yr and 3 months after it all began. The doc wanted to do 2 a week for 4 weeks on both legs. WC said nope, only left leg, don't care about "spread", only on the leg that was originally injured.

Rather glad it was only one side though. I left the office and was about 1 minute from the place when the most horrific pain hit. OMG!!! It was far worse than when it started. I wasn't able to walk,stand,sit,lay down....it all caused my 10 to hit 20. I suffered like that for 2 months after the block. Needless to say I told them all I will NOT ever do another one! LOL My neuro agreed so didn't push it. I didn't and don't have money to get any other kind of treatment.

Hope today was a good day for you. It was an ok day here. :-D

Hugs,

Karen

What a road we travel. Rsd has been a REAL trip!

I got the RSD way back in 2000, and worked about one year more. It wasnt that I wanted to stop working, I was forced out because of low job performance. It was then that it was dawning on me that life as I knew it to be was radically different from what it was before RSD.

Took them almost 4 years to quit saying it was in my head, and then bomb me with the RSD information. I really wanted to run from that revelation, but I couldnt run anymore

It all started in my right leg, and has now spread into my right arm and shoulder. The hips have really started hurtin the last few months, even to the point where I cant lay on my sides. Used to have some serious pain in the ankle that now is the entire leg.

I think the scariest thing is when they told me that it is effecting the central nervous system. Because of this my blood pressure is sky high, and even with 3 different BP meds it still runs high.

Pain is still the main factor in every day. At one time I was on lots of different pain meds that worked to bring the pain down some. But left me in fog all the time. Topamax worked for a while too until my hair started falling out, and it became increasingly hard to pee.

So today 3 BP meds, lipitor, and norco for pain is all I take everyday. Only one or two norco works to bring the pain to a tolerable level per day. At least I have some of my brain activity back LOL.

I have to use a cane most of the time, and for the loong walks I use a power chair. It seems to me the weakness is always getting worse not better. Although the weakness is getting worse, at least it is gradually happening.

One thing I would recommend is that anyone that has RSD get their bone density checked. When they checked mine the first time it was low normal. This was about 4 years into the RSD. They checked it again a year later and they said now it is osteopenia. This has also been getting gradually worse as time goes by. The doctor says it goes hand in hand with the RSD.

Sorry I didnt stick to the format, didnt have time to answer that way. Hope everyone is doin well as can be expected, and has a great holiday season!

The way you answered was fine, it said it all. I appreciate your time in helping me check in and collect some information on where everyone is now. Thank you again, I will put everything to gether when we hear from more members, 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

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

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