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I'm not a savvy as Rain and can't do the board in several colors and shapes and sizes but I can tell you  this.  We are on the look out for some moderators people that can you know be funny, informational  and just be you.  We need some Questions of the day some spiritual writings and some chat.   It does not always have to be on RSD.  Let's get some chat going here people this is what its suppose to be Chat!!!!  If you would like to be on the committee pls contact Naturelover, Ugg or myself Patches
I would like all you to welcome Naturelover as one of the New Administers to the Site also Ugg will be helping Naurelover and myself Patches!!![4]


  LIVING, LAUGHING, &  LOVING  WITH RSD!!!!! 

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Author Topic: Are there stages to RSD - you decide...  (Read 1211 times)

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Are there stages to RSD - you decide...
« on: June 15, 2011, 14:31:51 »

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=5
Four Stages of RSDS

Doctors classify CRPS/RSDS into different stages.

Although now most Doctors use these simply as guidelines since the more that is discovered about CRPS/RSDS the more they learn that there are no definable timetables for these stages especially with the advent of the new terminology of CRPS TYPES I and II.

For more on the problems with using stages to classify CRPS/RSDS be sure to read the information that follows "THE FOUR STAGES OF CRPS/RSDS" below.

THE FOUR STAGES OF RSDS / CRPS

STAGE ONE

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

Some characteristics are warmth, coolness, burning pain, edema, increased sensitivity to touch, increased pain, accelerated hair/nail growth, tenderness or stiffness in the joint, spasms, limited mobility, some bony changes may be visible on X-Ray, abnormal amount of pain for the injury. 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

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

Pain is constant, as in stage one, and throbbing, burning, aching, crushing in nature and is exacerbated by any stimuli. The affected limb may still be edematous, cool, cyanotic (discolored), or mottled (different shades). Nails are brittle and ridged. Pain and stiffness persists. Muscle wasting may begin.

Patient usually starts experiencing short-term memory problems , as well as increased pain from noises and/or vibrations, and other changes in the limbic system. These may include, but are not limited to; the inability to concentrate, inability to find the right word when speaking, depression, and irritability. X-Rays may reveal signs of osteoporosis. Patients may start to repeat themselves. In this stage there is also signs of increased sympathetic activity.

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 CRPS/RSDS. Understand that while these tests MAY show the presence of CRPS/RSDS, they are rarely conclusive and they should not be used as the sole determining factor in whether a patient does or does not have CRPS/RSDS. The only positive way of diagnosing CRPS/RSDS is a physical exam by a Doctor knowlegeable in CRPS/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

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 CRPS/RSDS may spread to other parts of the body. At this stage irreversible tissue damage may occur. Skin becomes cool, thin, and shiny.

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.

At this stage many CRPS/RSDS 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.

Pumps and Spinal Column Stimulators are usually discussed at this stage but there are other treatments available and more are coming all the time. Surgical treatments such as these should only be considered as a last resort.

STAGE FOUR

Most patients will never advance to Stage 4.

In this Fourth Stage, CRPS/RSDS is resistant to many forms of treatment.

Also in this stage there is an involvement of the inner organs.

Please do not allow any Doctor to amputate the affected limb unless it is a medical necessity due to gangrene or the like. While it is infrequent, amputations in an effort to eliminate the CRPS/RSDS pain are still being done. This is not only barbaric it is ineffective. It not only does not work but it also in most cases will exacerbate the CRPS/RSDS and increase the spread rate.

Always ask to speak to a Doctor's other patients before undergoing any type of implant or surgical procedure. Educate yourself on the internet. Talk to other patients. In the end, YOU are most responsible for what happens to your body. It is the only one you get so treat it with the utmost care. You deserve first class care always!


IN CLOSING

THE PROBLEMS WITH STAGES

While being able to divide patients into neatly defined stages is seen as a plus by some diseases it has always presented a problem for Doctors who are trying to make a diagnosis, and for patients who are trying to understand it, for the following reasons;

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

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

- CRPS/RSDS is an evolving and constsantly changing disease. The symptoms you have today may not be the symptoms you have next week, depending on how your body is reacting to; the weather, your stress levels, your current medication, the time of day, your living conditions, the time of year, where you are in the stage of the disease, etc. This makes it even more difficult for even the most knowledgeable Doctors to correctly diagnose and treat the disease. One more reason why the patient needs to educate themselves as much as possible. Don't assume your Doctor knows everything there is to know about CRPS.

Rain
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Re: Are there stages to RSD - you decide...
« Reply #1 on: June 15, 2011, 14:32:23 »

Hi Rain,

I would like to know what is meant by "organ involvement" as it appears, at least in my case, to have begun in me. Bladder and Uterus issues.

any help would be soooo appreciated
Summer
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Re: Are there stages to RSD - you decide...
« Reply #2 on: June 15, 2011, 14:33:02 »

Rain, thanks again for a great article.

Ree
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Re: Are there stages to RSD - you decide...
« Reply #3 on: June 15, 2011, 14:33:37 »

 :-[ 

Mike
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Re: Are there stages to RSD - you decide...
« Reply #4 on: June 15, 2011, 14:34:02 »

the stages of Rsd are right on target...to a point, in my case anyway. At first there was red, hot, and swelling along with the extream pain and the lightening bolts that just flew thru me. over time and spread that pain was replaced with bone pain, cold, pressure inside my bones, muscles feeling like they were being ripped off the bones, exhaustion, migrain headaches, contractions (not cramps) during my period (which they are dealing with now), depression, insomnia. I know there is more but to be honest seeing it written here is a bit overwhelming. It's been more than 10 years and I know there is some organs being affected, bloodflow, eyesight is worse. So, yes. There are stages to RSD, but I think they do not go far enough...also fibromyalgia is the newest thing for me plus Hosimotos (auto-immune hypothyroidism). So I believe my whole immune system is now involved. If you get a cold I get Pneumonia, If you get broncitis again I get double pneumonia....and on and on. Anyone else see anything familiar in what I have added?

Summer
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Re: Are there stages to RSD - you decide...
« Reply #5 on: June 15, 2011, 14:34:22 »

Hi Summer!

I agree that there are many issues there are some which you mention that I am fearful I am facing at a much lower time frame.  I try to tell myself it is in my head, I am imagining it but it always seems to come down to the same thing.  I am fearful that in time I will be all consumed and as each day ticks buy I notice more and more.  My research cannot always come up with stuff to print up and take to the doc's.  I would love to come upon something that talks about internal workings of RSD so if anyone knows of a site or a book please let me know...

What I do not agree with though is that they are stages, I think they are more like signs and symptoms that come as time goes on but not always in the stage order/timelines.

Hugs and Love

Rain
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Re: Are there stages to RSD - you decide...
« Reply #6 on: June 15, 2011, 14:34:44 »

Yes Rain, I agree. At first the "stages" are pretty on target, but then something happens. There are no more stages mentioned after 4. But I think there are more stages to this illness and maybe we are finally getting somewhere, the study on how this affects the brain gave me some hope, maybe not in my lifetime, but the next generation will benifit from all the knowledge that is begining to surface now. I also beieve that groups like our own are a major player in finding the answers. Remember how MS was once seen and delt with. And today, while there might not be a cure, they know what is really going on. And that in itself helps.

Summer
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Re: Are there stages to RSD - you decide...
« Reply #7 on: June 15, 2011, 14:35:04 »

I think this concept of stages is ok but not clearcut. This disease is so individualized for each patient and we do notalways follow the stages as listed. I think some of the symptoms listed in stages overlap and can occur at the same. We all agree this monster is a constantly evolving disease. Look how it evolves during the timeframe of a day. I think the concept of stages makes doctors feel better because they can assign the patient to a stage or timeframe.

Ree
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Re: Are there stages to RSD - you decide...
« Reply #8 on: June 15, 2011, 14:35:26 »

If you read Hooshmans' site he says there are stages to and stage 4 is cancerous and your immune system definitely fails to the point of death.  I believe there are stages and symptoms during the stages which you go through.  I think the time frames are inaccurate. 

Patches
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Re: Are there stages to RSD - you decide...
« Reply #9 on: June 15, 2011, 14:36:53 »

If you read Hooshmans' site he says there are stages to and stage 4 is cancerous and your immune system definitely fails to the point of death.  I believe there are stages and symptoms during the stages which you go through.  I think the time frames are inaccurate. 


Thank you Patches! You have explained what I have always thought but never could figure out how to say, the time frames.  I think you can have symptoms of two stages at once during the early stages and I think this overlap of symptoms is what adds to the confusion for everyone.

Ree
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Re: Are there stages to RSD - you decide...
« Reply #10 on: June 15, 2011, 14:37:22 »

frightening.

Summer
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Re: Are there stages to RSD - you decide...
« Reply #11 on: June 15, 2011, 14:38:00 »

Rain you are very sweet and I am sorry for all you face too. I think my frustration is that each doctor only looks at there area and none connect the things together. I feel like a hot potato always being thrown to someone. Just fyi before I got rsd I was sick for 2 years with a flu and fever every month.So I do feel there are connections. I am here too if you need or want a friend

Gina
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Re: Are there stages to RSD - you decide...
« Reply #12 on: June 15, 2011, 14:38:38 »

Summer I've only meet 2 people that have actually gotten to stage 4 for one.  Dr. Hooshman is a specialist on RSD and he says there are 4 stages to RSD.  The 4the stage is the final stage where you immune system is totally compromised  and you will get cancer and other disease to attack you body you will not die from RSD but from complication of RSD.  But very few go to this stage.  So no worries Summer until you hit a brick wall okay??????  Remember this is one dr opinion and that is all there are plenty other opinions out there,

Lots of Love,

Patches
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Re: Are there stages to RSD - you decide...
« Reply #13 on: June 15, 2011, 14:39:11 »

Yes I agree the time frames there may be something for one person at 2 years where another person at 7 years is just going through.  Great way to explain it

Thanks Miss P!

Hugs and Love

Rain
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Re: Are there stages to RSD - you decide...
« Reply #14 on: June 15, 2011, 14:39:49 »

I was doing some research and came across this from the Nationl Guideline Clearinghouse's RSD/CRPS Clinical Practice Guidelines.  (http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=4117&nbr=3162 ).

"The staging of RSD/CRPS is a concept that is dying. The course of the disease seems to be so unpredictable between various patients that staging is not helpful in the treatment of RSD/CRPS. Not all of the clinical features listed below for the various stages of RSD/CRPS may be present. The speed of progression varies greatly in different individuals. Stage I and II symptoms begin to appear within a year. Some patients do not progress to Stage III. Furthermore, some of the early symptoms (Stage I and II) may fade as the disease progresses to Stage III. The following stages are presented in these guidelines merely for historical significance."

Ree
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