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Old 18-09-2013, 05:21 PM   #1
eburkedpt
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Default The Princess in The Tower

A patient of mine with RSD/CRPS referred me to this website:

http://www.theprincessinthetower.org/default.html

The website is written by a female who was diagnosed with RSD/CRPS in 1999 and was a journalist prior to her pain experience.

Evan
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Old 18-09-2013, 07:52 PM   #2
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Well, she promotes a massage therapist in the UK (Stillpoint Therapies) that is a JFB-MFR acolyte. .

Quote:
Myofascial release is one of the fastest growing therapies in the USA and with good reason. Jan trained to an advanced level in the USA with John Barnes. Myofascial release really gets to the root of long term chronic pain conditions.
Don't want to judge the whole site on this one glaring wart, however. It looks like there is some useful information there, too.
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Old 18-09-2013, 08:01 PM   #3
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I agree that some of the treatment ideas are concerning after reading more, but I enjoyed the sections titled "To Carers, Family, and Friends" and "How to Help a Patient." The patient that referred me to this site has stated that reading this has helped her in her management. She told me printed out this page and gave it to her friends and family.


The Top 20 Things Not to Say to a Chronically Ill Person:

People always have good intentions when they think what they are saying to a person with chronic pain is helpful or uplifting, but even with the best intentions, if they actually took a second to hear what they are saying, they may retract those words. Here are some of the many comments and words that are spoken out of ignorance. Enjoy!


You look so good today!
You just need to get out of the house more often.
If you stop thinking about it so much, the pain will go away.
You must not want to get better if you won’t try this.
When I was your age I didn’t have the luxury of being sick!
I wish I could just laze around all day!
No pain, no gain!
I’m so glad to see you out and about feeling all better.
Is it hurting now?
I have this juice that is working wonders…
You’re sick again?
You don't know what it feels like to be old.
Your illness is just caused by stress.
You can’t be in that much pain.
Maybe you just want attention.
It’s not good for you to miss the day.
When are you going to get rid of that cane?
Oh is it a bad day today?
It can't be good for you to take so much medication.
But you don't look sick!
You seemed fine earlier and when I saw you last week.
I met someone who had that and they're fine now.
It can't be that bad if you're not screaming.

Remaining Intact In Spite of Well Intentioned 'Advice'As your chronic illness continues, some people may assume you've given up but physical limitations are not a measurement of determination about your disease. Each person must look at their own situation and what is an attainable goal for their individual body. It may be something as small as walking to the sofa and back, a huge achievement for some. Never judge another's limitations whether you yourself have a chronic illness or care for someone or a healthy friend.
Friends and family often give 'advice' because they don't know what else to do – they can't make your pain go away. Helplessly watching someone suffer can be emotionally difficult for the patient's loved ones too.

Work out a more positive way that your loved ones can support you, such as helping you get dressed, running errands or weeding your garden when you can't do it yourself. Ask your friends to just be there and non-judgmentally listen when you need to talk. Support is vital and loved ones really do want to be supportive, they just need to be guided in a positive direction.
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Old 18-09-2013, 11:54 PM   #4
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ill have to check that out. There is another good blog written by patient dealing with more of a chronic pain issue. It is http://sunlightinwinter.com/. A lot of good information there for patients and clinicians
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Old 28-08-2014, 10:29 AM   #5
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Quote:
Originally Posted by eburkedpt View Post
It can't be that bad if you're not screaming.
[/B]
Dang- if I had a doctor say that to me - I would probably get off the table and chop him in the throat. lol
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