Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 04-26-2014, 12:45 PM #1
Brambledog Brambledog is offline
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Hi Diane and Bo

I read your other post on the service dogs thread, I'm sorry you're dealings with CRPS and having a tough time of it. There are plenty of folk here to understand what you're dealing with, and if you have a read around there are threads dealing with all sorts of issues, there's a good one 'mourning the loss of myself, an open discussion' which has a lot of stuff about how we all deal with the changes to our lives...

CRPS is a horrible thing, but you can still enjoy the life you have, even if too much has had to change for you. I've had it for three years, and I'm still learning how to deal with some of the things it throws at me. It's spread to other parts of me, and has changed almost every aspect of my life in one way or another. I went through some dark times early on in the first year or two, but mostly I'm happier now and feel a little more in control. Mostly lol

Do you have a doc who is helping you? Are you on any meds? Have you been offered much by way of advice or help like a psychologist? How long have you had it and in what way? Sorry for all the questions! Just interested in your story... If you don't have a good doc, please look for one who knows CRPS. If you start a thread on this site asking for recommendations in your area, hopefully someone will know of a name to try. A good doc can help a lot. A bad doc can make things so much worse. You shouldn't have to tough things out alone... I hope you have been able to get some meds that help. Unfortunately CRPS pain is notoriously hard to control, but things like lyrica/gabapentin/amitriptyline can help long-term nerve pain, and there are plenty of others docs can try depending on your health generally.

Psychological help is a big thing, and of course why so many of us are here You will get lots of support here, and a shoulder to lean on in bad times. We are good listeners here lol A counsellor or psychologist is a good idea if you can get a referral (or find one privately). Long term pain causes all sorts of emotional problems, but a good professional can help a lot. There are a few poor ones, but if anyone makes you feel bad about yourself in any way, use the door and walk out. Don't stay to hear anyone put you down.

There are a few things to try in the meantime. Unperfumed Epsom salts are great to get magnesium into your body (very essential, especially for us lucky folk with CRPS ), and good for the long-term burn. Put a few tablespoons into a bath, or wrap some in a damp flannel and put it directly onto your skin when it is burning. You can also buy a cream. Also, vitamin C daily is a good plan as its been proven to help prevent spread of CRPS (but don't take without your docs agreement if you've ever had kidney stones).

I use meditation (Mindfulness ones, free on YouTube), and massage of my cripsy limbs using a good natural nice-smelling oil, and also Qi Gong gentle exercises (also on YouTube lol) to help control my pain, as I've had issues with quite a few meds. Generally, it works pretty well to give me a feeling of being in control of my disease, and helps my mood. A few treats are fab for the soul

I hope today is one of your better days and that things are going ok at home and your life in general. We all have good and bad times, and we do know how crappy this thing can make you feel. Weekends are usually a bit quiet on here, but reach out anytime and someone, somewhere will be listening

Take good care of yourself, and I look forward to hearing more of your story sometime. Keep smiling and good luck.

Bram
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

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allentgamer (04-27-2014), birchlake (04-26-2014), deb b (06-02-2014), eevo61 (04-28-2014), Lottie (04-27-2014), OhioDiane (05-08-2014)
Old 04-26-2014, 02:56 PM #2
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Default Welcome Diane

My name is Jesika aka eevo,welcome to our community and hope we can all be able to help you.
I hope you already have a medical plan depending on your stage ,their are many of us who's medical treatments worked and some doesn't ,but is good to learn from everyone.i learned at the beginning by reading each member postings and short biographies that gives you an idea of how we all evolve and learn to deal with this condition.
Yes,you don't have to feel or being alone,you have a huge family here,we can always learn from each other,blessing and wish soon you find some comfort in all of us,your friend Jesika
Ps. I do crochet as well,not much lately but I love it ,don't stop smiling
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Old 05-08-2014, 04:51 PM #3
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Quote:
Originally Posted by eevo61 View Post
My name is Jesika aka eevo,welcome to our community and hope we can all be able to help you.
I hope you already have a medical plan depending on your stage ,their are many of us who's medical treatments worked and some doesn't ,but is good to learn from everyone.i learned at the beginning by reading each member postings and short biographies that gives you an idea of how we all evolve and learn to deal with this condition.
Yes,you don't have to feel or being alone,you have a huge family here,we can always learn from each other,blessing and wish soon you find some comfort in all of us,your friend Jesika
Ps. I do crochet as well,not much lately but I love it ,don't stop smiling
Thank you eevo. It's so nice to 'meet' you!
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Old 05-14-2014, 01:04 PM #4
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Hi Diane,
Welcome to the forum.
All too well we in here can relate. The feeling of lost and alone in our struggles is far too common. At least we have this place to come and find info, friendship or just vent. There's always someone to lend an ear.
Best of luck...
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Hope for better days.....
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Old 05-15-2014, 01:19 PM #5
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Hey Russ, Thank you for the welcome. I can see myself stopping by here more and more. Wishing you peace amidst the storm~Diane
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Old 05-08-2014, 04:48 PM #6
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Heart Thank you all so much!

Thanks so much Bram!! I appreciate the humor, compassion and positivity. Thanks for shining your light my way. P.s. Bo says Hi

Quote:
Originally Posted by Brambledog View Post
Hi Diane and Bo

I read your other post on the service dogs thread, I'm sorry you're dealings with CRPS and having a tough time of it. There are plenty of folk here to understand what you're dealing with, and if you have a read around there are threads dealing with all sorts of issues, there's a good one 'mourning the loss of myself, an open discussion' which has a lot of stuff about how we all deal with the changes to our lives...

CRPS is a horrible thing, but you can still enjoy the life you have, even if too much has had to change for you. I've had it for three years, and I'm still learning how to deal with some of the things it throws at me. It's spread to other parts of me, and has changed almost every aspect of my life in one way or another. I went through some dark times early on in the first year or two, but mostly I'm happier now and feel a little more in control. Mostly lol

Do you have a doc who is helping you? Are you on any meds? Have you been offered much by way of advice or help like a psychologist? How long have you had it and in what way? Sorry for all the questions! Just interested in your story... If you don't have a good doc, please look for one who knows CRPS. If you start a thread on this site asking for recommendations in your area, hopefully someone will know of a name to try. A good doc can help a lot. A bad doc can make things so much worse. You shouldn't have to tough things out alone... I hope you have been able to get some meds that help. Unfortunately CRPS pain is notoriously hard to control, but things like lyrica/gabapentin/amitriptyline can help long-term nerve pain, and there are plenty of others docs can try depending on your health generally.

Psychological help is a big thing, and of course why so many of us are here You will get lots of support here, and a shoulder to lean on in bad times. We are good listeners here lol A counsellor or psychologist is a good idea if you can get a referral (or find one privately). Long term pain causes all sorts of emotional problems, but a good professional can help a lot. There are a few poor ones, but if anyone makes you feel bad about yourself in any way, use the door and walk out. Don't stay to hear anyone put you down.

There are a few things to try in the meantime. Unperfumed Epsom salts are great to get magnesium into your body (very essential, especially for us lucky folk with CRPS ), and good for the long-term burn. Put a few tablespoons into a bath, or wrap some in a damp flannel and put it directly onto your skin when it is burning. You can also buy a cream. Also, vitamin C daily is a good plan as its been proven to help prevent spread of CRPS (but don't take without your docs agreement if you've ever had kidney stones).

I use meditation (Mindfulness ones, free on YouTube), and massage of my cripsy limbs using a good natural nice-smelling oil, and also Qi Gong gentle exercises (also on YouTube lol) to help control my pain, as I've had issues with quite a few meds. Generally, it works pretty well to give me a feeling of being in control of my disease, and helps my mood. A few treats are fab for the soul

I hope today is one of your better days and that things are going ok at home and your life in general. We all have good and bad times, and we do know how crappy this thing can make you feel. Weekends are usually a bit quiet on here, but reach out anytime and someone, somewhere will be listening

Take good care of yourself, and I look forward to hearing more of your story sometime. Keep smiling and good luck.

Bram
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