Hi Wolflarsen,
I'm sorry you experienced such unprofessional treatment with your doctor and nurse.
Considering that you indicated that you don't have insurance you will be best served if you can arm yourself with the most current data on RSD/CRPS. You need to educate yourself quickly and I would highly recommend the Medifocus Guidebook on Reflex Sympathetic Dystrophy. It starts out by quickly answering your most fundamental questions about Reflex Sympathetic Dystrophy, including:
What causes the condition and are there any recognized risk factors?
What are the predominant signs and symptoms?
How can you be sure that it's really Reflex Sympathetic Dystrophy and not another underlying condition that causes similar signs and symptoms?
What tests are needed to establish the diagnosis of Reflex Sympathetic Dystrophy?
What are the standard treatments?
What are your treatment options in case the standard treatments don't work for you?
What is the most likely outcome or prognosis after treatment has been completed?
How will the condition affect your lifestyle and what steps can you take to minimize the negative impact on your quality of life?
What are the most important questions to ask your doctor about Reflex Sympathetic Dystrophy?
Here is a link to a preview of the book.
https://www.medifocus.com/2009/previ...5581&gid=NR015
To answer your question about spread here is what the most current Medifocus has to say:
Quote:
Subgroups of Reflex Sympathetic Dystrophy
There is no consensus of how to categorize subgroups of reflex sympathetic dystrophy (RSD) but several methods have been proposed including by the pattern of spread and by prominent symptoms.
Pattern of Spread
• Contiguous spread - This occurs in almost all patients and involves the gradual enlargement of the affected area.
• Independent spread - Signs and symptoms appear at distant sites not adjacent to the initial site of the injury. This pattern occurs in up to 70% of patients with RSD.
• Mirror image spread - Signs and symptoms appear in the same area on the opposite (contralateral) limb. This pattern occurs in up to 15% of patients.
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While there are times that I have RSD pains in other areas of my body I have never been able to have it confirmed that the RSD has spread.
Many people talk about having "whole body RSD" as the result of their spread (my heart goes out to each and everyone of you, I honestly don't know how you get through the day with this spread everywhere). I've never really understood exactly what that means as it has not been my experience. Of course every time my arm burns at the slightest cold temperatures or when the pain ping pongs from joint to joint along the left side of my body it scares the crap out of me. Other than those sensations I don't have the typical external signs of RSD anywhere for the doctors to be able to confirm the spread.
I think about this a lot and reading the latest Medifocus guide seemed to make the light go on for me.
I believe that there is a centralization of the pain that occurs in most of us probably right from the beginning. The RSD manifests itself differently in each of us depending on many many individual factors.
Here are a couple of quotes from the guide:
Quote:
Reflex sympathetic dystrophy appears to be a combination of both the sympathetic nervous system as well as other systems such as peripheral, central, immune, and vascular. In effect, what may be happening with RSD is that a vicious cycle is created: the sympathetic response leads to chemical
changes which then activate the response of other systems (e.g., central nervous system) which leads to more pain, which leads to more chemical changes, and so on.
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Quote:
In short, it appears that the pain of RSD is not related to an overactive sympathetic nervous system, but rather, reflects a more global involvement including:
• Peripheral nervous system
• Sympathetic nervous system
• Central nervous system
• Vascular system
• Immune system
• Inflammatory responses
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Personally I would fire your doctor and seek help from someone more experienced. Before you book the appointment and commit to spending the money make sure they treat other RSD patients.
Good luck.
MsL