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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 07-31-2007, 02:34 PM   #1
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Does your pain get worse as you progress from stage 1 to 2 to 3?

Hi All,
I am frightened to death with the RSD progression. I have experienced new symptoms every few days. The latest is the nail growth and tremors on my right hand and my pain goes up to the wrists. Does the pain level go up even more as your progress from stage 1 to 2 or 3? I would like to hear from you especially if you are beyond stage 1.
Thanks!
Anita

 
Old 07-31-2007, 03:08 PM   #2
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

hi anita. i don't know exactly what stage i am in. for me, stage 1 and 2 are mostly combined and i have had the same symptoms all along and at 1 point last year, about 6 mo into it, my pain went into my elbows.(at 1st, in hands, palms only and ulner nerve, and wrists), then forearms and elbows. since then, it has not progressed up my arm or anywhere else in me but, i do have many other symptoms like, very tired all the time(doc says narcoleptic), heat flashes(very intense), very dizzy at times, mem. loss, extremely dry skin(cracking on fingers), intense headaches, so far that is all i can think of. before all of this, (2000), i was very healthy, fit, happy. now i am flabby, gained weight, no muscle left, cranky, tired, sad, depressed...ect. i would never dreamed that my life would change so fast. i was always skinny, fun, pretty, ect. now i feel ugly. it's been a nightmare and never changes. i did everything with my son when he was small. my daughter was 2 when i first got hurt. she probably thinks i'm a boring, sad person. she will never know me like my son. it is soooo sad. but i guess i could have it alot worse. my friend's husband was hang gliding in new hamp and was 10 ft from landing and a strong wind came in and he landed on his head and broke his neck and now is a parapalegic(can;t spell). so i guess i will try and look on the bright side. ok anita, i just went totally off the subject, sorry, have a great day, patti

 
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Old 07-31-2007, 04:32 PM   #3
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

hey,
I am right there with you. I am not sure what stage I am in but the last week or so mine has gotton worse. It started in my right leg now it is in both. I have also started feeling pain in other places as well. I hope I didn't scare you any more then you are, Just remember that it is a little diffrent for everyone. I just pray it doesn't get any worse for you. Does yours ever stop hurting even for a min?
Becky

 
Old 07-31-2007, 05:42 PM   #4
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

IMHO The "stages" of RSD are crap. I've read a lot of papers and most of the highly respected docs who know as much as is possible to know about RSD think they're crap too and discourage someone from trying to focus on what "stage" they're in.

Here's examples for you to see what I mean. This is long but I think it will help make things more clear.

Stage one is called the acute stage and can last one to three months.

Some characteristics are warmth(fewer people have hot rsd to begin with than the ones who get cold rsd)

coolness(try really, really cold, freezer cold)

burning pain(can take time for it to show up)

edema(only had swelling for the first 4 months)

increased sensitivity to touch(I didn't have this at all until in the last year. I only had sensivitity to air for the 1st 3 years)

increased pain(this is a given. )

accelerated hair/nail growth(could happen right away, take months or not at all)

tenderness or stiffness in the joint(Didn't have this until after 2 years in)

spasms(had that from the beginning, it's why the limbs jerk)

limited mobility(only when I couldn't use my leg in the first 2-3 months. It can get better then worse again like it has for me in the last year)
some bony changes may be visible on X-Ray(I still have no bone density changes. Talked to a guy once who had RSD for 10 years and had no changes either)

abnormal amount of pain for the injury(well duh. LOL)

In this stage there is decreased sympathetic activity. For the patient, she, typically a she, may feel as if their limb is on fire and is amazed when it actually feels cool to the touch(this is due to the lack of blood flow to the extremities)

Stage two is called the Dystrophic Stage and can last three to six months.

Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is exacerbated by any stimuli.(It could feel like all of them or none of them, or in between, depends on the person)

The affected limb may still be edematous(maybe, maybe not) cool, cyanotic (discolored), or mottled (different shades).(I had discoloration right from the beginning as most of us do, so does this mean that we're all stage 2 right from the start?)

Nails are brittle and ridged(4 years now and don't have this problem)

Pain and stiffness persists(Didn't persist, it just began to happen over years)

Muscle wasting may begin(not if you use the limb, it's not a given)

Patient usually starts experiencing short-term memory problems(Because of pain and meds)

as well as increased pain from noises and/or vibrations(Could be right from the start or develop over time)

and other changes in the limbic system; these include the inability to concentrate(Because of pain), find the right word when speaking(Because of pain). X-Rays may reveal signs of osteoporosis(Could take years to show this). Patients may start to repeat themselves(Because of pain)

In this stage there is increased sympathetic activity.(IMO it's there from the start)

Some Doctors will try and use tools such as x-rays, Bone Scans, thermograms, and others during Stage 2 and Stage 3 to confirm a diagnosis of RSDS(No, they use these tools right from dx)

Understand that while these tests MAY show the presence of RSD, they are rarely conclusive and they should not be used as the sole determining factor in whether a patient does or does not have RSD. The only positive way of diagnosing RSD/CRPS is a physical exam by a Doctor knowlegeable in RSDS. These other tests should only be used as one of many tools to aid in that diagnosis. They are also useful in tracking the progress of the disease over the course of the time.

Stage three is called the atrophic stage and can last an unlimited amount of time. Pain as usual is typically constant but can increase or decrease, depending on the person, and the RSDS may spread to other parts of the body(Spreading can happen the same day, within weeks or months, even years later)

At this stage irreversible tissue damage may occur. Skin becomes cool, thin, and shiny.(From medical papers I've read irreversible damage to tissue and nerve endings occur after having RSD for just 6 months. My skin changed within the first 4 months)

Contraction of the extremity may occur as well as atrophy of the limb (decreased joint movement). Skin atrophies (wasting away) and loss of movement or mobility may also occur. X-Rays may show marked demineralization and increased osteoporosis. (It may if you don't use the limb or are unable to move it. It can take a few weeks to years and years before seeing bone density changes, it differs for everyone)

At this stage many RSD patients are not likely to be effectively treated with blocks as the percentage of SIP (Sympathetically Independent Pain) is now much greater than the percentage of SMP (Sympathetically Mediated Pain), meaning the majority of the pain signals are now originating in the brain and not at the original RSD site where a local block would help. (You can have SIP in the first few weeks, months or years later, depends on the person's body. Blocks sometimes don't do anything at all even if given in the first month or two)

THE PROBLEMS WITH STAGES

- Most patients have symptoms from multiple stages at the same time making a definitive diagnosis difficult.

- Stage 1 and Stage 2 are so brief, sometimes less than a few months total, and very few patients are diagnosed within those first few months

- Depending on which Type of CRPS you develop you may not develop many of the symptoms listed for each of the stages, again making for a confusing diagnosis.

- Some patients may never advance to Stage 3 and only a very few patients will advance to Stage 4.

It may be difficult to determine your stage due to the combination and/or lack of symptoms.

- A better benchmark of where your RSD/CRPS is may be mapping your percentages of SMP and IMP over a period of months. Like diseases such as MS, RSD is a progressive disease, meaning it advances over time. Placing a patient into a clearly defined Stage with a highly fluid disease like RSD just doesn't make medical sense, as we are learning.

- Not all Doctors agree on the existence of a Fourth Stage.

 
Old 07-31-2007, 06:21 PM   #5
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Thank you for that information. It makes me feel a little better. I have had many diffrent symptoms from the start. I had pain, burning, color change, swelling right off. I am still having all of them, plus more now.
Becky

 
Old 07-31-2007, 06:36 PM   #6
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Patti,
It seems to me your progression was slow. You are not alone. I felt the same way. My younger daughter probably felt that i am bored because i could not do much with her than the older one. I had become very non-active ever since i had the pelvic pain back in 11/04. Yes, i gained a lot of weight but lately i started to lose weight because of the RSD. I wonder what is the level of your pain at this time from the scale of 1 to 10? Is it constant also.
Becky,
During the first two weeks of my symptoms started, only drying skin, stiff, swelling but no pain. After that, my pain has increased every day to a poin t that when ever i use my hands it hurt so bad. Even if i don't use it, it still hurt but no as bad.
Gale,
I think you are right. The stages are not universal. For me, the symptoms come on very suddenly. They started with both hands. My pelvic pain doc agreed with me as she thinks there is no way i can get it from the IV needle injury and there is no way i can get it for the both hands. Couple weeks later, i find that my feet are going through the same process.
I can't wait to get treatment soon!
Thank you all for your sharing! You make my day. Just went to psychiatrist and she prescribed some sleeping pills for me. Hope i can sleep tonight.
Hope we all have no progression from this monster!
Anita

 
Old 07-31-2007, 07:28 PM   #7
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

hi anita , i originally got hurt at work in 3/2000. didn't develop rsd until 11/05 during my 4th anterior c-spine fusion with plate at 3 levels. i woke up with major burning pain in hands, color changes and at the point, i had no use of either hand. stayed in for a week(actually, the very next day, had posterior c spine with wires put in.). the doc told me my nerves were on fire cause he moved things around and it would go away . it never went away. the next day, my pcp told me rsd but ortho did not agree. after months of fighting with rsd, finally saw pm in march who confirmed my pcp as soon as he looked at my hands. i feel lucky that it hasen't spread to bad. the spreading took place rather quickly and then stopped. i pretty much stopped being patti in 2000 but patti has gotten much worse since then. w/c is actually pretty fair with me and i am on ss so i am rather lucky that i don't have to work with all of this. i can't imagine having to work with this but many do. i just hope i have good luck with the scs as i need toi get off the narcs. i am sooo bad with them. i am on the lowest does of everything except cymbalta and i still get sick and wasted on them . i also take anti-nausea med. recently, i have been diagnosed with narcolepsy. this is new and just started in early june. my pm says it from rsd but his partner who i saw last week says no so i will do a sleep study next month with my pcp so i can find out. i take med to sleep at night and now i take med to stay awake in the day, whats next??? oh well, i just try to keep my spirits up and make the best of it. just seems rsd is making me lazy. well, i guess i just wrote a short story..lol sorry. feel better and talk soon, patti

 
Old 08-02-2007, 11:57 AM   #8
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Patti,
Thanks for sharing your story! I am curious as to what has triggered your RSD. Was it the c-spine infusion or the accident at work? If it was at work, how come RSD start a few years later. Just want to learn more.
Anita

 
Old 08-03-2007, 03:00 AM   #9
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Anita,

Your doing it again...Take it day by day. Your going to see a doctor real soon and he will (or should) address these issues. All your doing is creating panic for yourself and making things worse. Stress contributes to flare ups and disease progression. Im not trying to be a jerk by any means, but you have read to much and are getting WAY WAY ahead of yourself. Calm down its not the endof the world, Relax... What will be, will be. I went through andcounted your threads and its seems to me by how many threads you are creating your doing something called "self created drama:. Just get readt for the blocks and take it from there... STEP BY STEP. until try doing things to get your mind off the RSD. Good luck

JOn

 
Old 08-03-2007, 10:48 PM   #10
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Jon,
Thanks for your reminders! I actually tried to relax a little bit by going to have a hair cut, then the YMCA-doing a little swimming and going into the hot tub. Afterward, taking my time doing a bit grocery shopping. After dinner, went for a walk and enjoyed the sunset.
Anita

 
Old 08-04-2007, 06:24 AM   #11
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Anita,
I have to agree with Jon.. I noticed the samething when I read all the threads.. Try not to go ahead of yourself.. You may not even need all these treatments.. They seemed to catch it early which is a great sign..
I am also not trying to be mean.. What happens is your creating stress mentally.. and your going to start worrying about it all..
When i first was DX.. I did the same thing.. I went online.. read about it, looked at pics and said to myself.. Oh my god.. I am going to be disabled and be in a wheel chair and all crippled up for the rest of my life.. All the horror stories.. Try not to look at the worse case sinarios.. Not everyone is like that.. Some people stay the same for yrs.. and never have change..
Once I started seeing a dr.. and started getting treatment, my mind started calming down.. I noticed I didn't go on the internet as much.. Its weird cause I noticed I wasn't as upset.. I think whats happens is you mind starts playing games with you.. and believe me, Iam sure alot of people on this health board will agree with me.. If you start reading up to much and saying oh my god am I going to be like this etc.. you start going crazy and soon you will be so mentally stressed and then it turns into physically.. Then before you know it.. Your so flared up, depressed then you have to pull yourself out... and move on.. its hard. I know.. I sooo remember what your feeling right now.. I think what happens to alot of us is.. we come to accept it.. Like I had before in alot of the threads.. Once your dx which you are now.. and once you get the right treatments you mind will start calming down.. Right now you are soo full of anxiety.. Understandable.. try to relax.. take some time out. I know its really hard because its on your mind 24/7.. Are you taking any antidepressants?
Please don't get me wrong.. I am here for you and so is everyone else.. We just want you to try to relax and take a step back.. so you don't flare up.. Soon you will learn what you can and cannot do..
Do you right a journal.? If not.. I think it would a great thing for you. I use to do it in the beginning.. because everything was happening so fast.. My head was spinning.. and when I had to sit with lawyers etc.. I couldn't remember anything.. I actually thought I was going crazy..
Anyway.. We're here for you.. Take care and relax today... Drs orders lol lol
Michelle

 
Old 08-04-2007, 06:27 AM   #12
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Anita,
I read that the dr feels its not from you IV... and you stated that you have pelvic pain.. Could all of this been from your pelvic pain?? Maybe the pevic pain is the RSD.. Just a thought.. I hope you have been sleeping better.. Take care.
Michelle

 
Old 08-04-2007, 04:05 PM   #13
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Michelle,
Thanks for your kind reminders. I don't think the RSD is from my pelvic because i don't have the skin or color change there. I never have a problem with my hands until after that painful IV experience. I have been on antidepressant. The doc said it may take several weeks to kick in. I am also on some sort of sleeping pill but the doc only let me take it every other day. So last night i am up all night thinking about what had happened and what had gone wrong and what would happen to me in the future. Like you said all the unknown and anxiety have drove me crazy. Believe me, i am trying to relax a little bit. But it is hard. I am sure you know that.
I know i am not alone.
Thank you!
Anita

 
Old 08-05-2007, 02:56 PM   #14
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Anita,
I know you were saying that you didn't think the RSD started from you pelvic.. because you didn't have any skin change, color change in that area.. I injured my cervical spine.. I didn't have any of those signs other then the heriation pain. No RSD symtoms at all in my neck. I started with the hands.. I have what the call the mirror image spread. The symtoms appear in the same area on the opposite limb.. Most people have the independent spread.. I think its about 70%. Thats usually when the symtoms appear away from the actual injury. Just a thought.. I am not dr soo.. I am just giving you the knowlege that I learned from my dr.. I wish I was a dr.. I would find a way to heal all of us... lol
Michelle..
PS.. Dr S would be so proud of me.. I learned something from him...

 
Old 08-06-2007, 12:40 PM   #15
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Re: Does your pain get worse as you progress from stage 1 to 2 to 3?

Hi Anita,
From my own experience, yes, the pain gets progressively worse as the RSD spreads from stage 1 to 2. Mine was a result of a fall at work. The injury was to my left hand and wrist. It has been 4 years now and I have it on the entire left side of my body. RSD attacks the central nervous system, so if it is not arrested at the point of impact it will get worse. I now take 1000mg of Arthrotec, 1500 mgs of Neurotin, 10 mgs of Flexeril, 7500 mgs of Vicodin, 20mgs of Lexapro, 10mgs of Provigil plus 5 mgs as needed of Valium daily.
I am still on pain. I am currently waiting for WC to approve the Ketamine Infusion for me as nothing else has helped. One of the key things I try to do is keep moving. If you don't move you add muscle atrophy to the problem. I hoped that I helped. Please feel free to get back to me if you need to.
Maryann

 
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