[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.

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

[ali12]

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

[Debbie V]

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]

[CZZ74]

Originally Posted by Debbie V

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]


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

[GalenaFaolan]

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'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'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 am interested in general and specific knowledge of how you are coping now. Which are the predominate features that dominate now. what type of pain. How consistent. What has changed in terms of your pain from previous years.

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.

How active are you able to be, and if so what are the consequences if you go over that safe active time?

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.

How weak are your affected limbs?

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.

Which therapy modalities have helped the most? which have you stuck with , physical therapy, psychotherapy, tens machine etc.

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

Meds, whats working- have your meds increased or decreased.

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.

Ability to work?

And if not is it due to meds as well as pain from RSD?

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

[allentgamer]

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!

[CZZ74]

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

Originally Posted by allentgamer

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!

[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.

[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.

[DianaA]

I have to keep this short tonight. I was diagnosed in 1989 with RSD. First in my right shoulder. I had to have a surgery to repair my shoulder and it spread from there. I now have full body RSD. I have had 3 series of 10 each stellate blocks. I also had a Upper Thoracic Radio Frequency Sympathectomy. I now treat myself with HBOT in a home chamber at 2.4 ata. I have bone crushing pain, spasms, swelling, mottled skin, frozen cold extremities and I also have burning pain. All this is kept to a minimum with HBOT.
My life is a constant planned existence to keep pain at the lowest level possible at all times. HBOT has been the saving treatment and I am thankful, but not a cure for me. I, also like many of you was tested for Lyme. Not enough markers to test positive. I don't believe there are any negatives, through the CDC, but I could stand corrected. I live my life the best I can each day to my standards, not anyone elses. I am not sure there will be a cure in my life time, so I just move through each day with gratitude. Not so graceful at times, but certainly thankful for each painful night I survive.
This is the really short version. I left out all the details of meds, too much meds, side effects of meds, the effect on my family and the diminishment of quality of life I have suffered, until I realized there was still a lot I could do, with concessions, exceptions and proper planning. Each time I check into the forum or speak with one of you, I realize that I am in Good Company!!!! I AM BLESSED. I have learned a lot from the RSD and the daily challenge of pain, limited range of motion and the mental strain. My hands are swollen and painful tonight, so I'll close for now.
All the best to each of you,
Diana