Hello. I would very much like to connect with others who are dealing with rsd/crps. For the longest time I've been trying to tough it out on my own. I'm not doing so well with that. It's been a lonely and frustrating road. I try to minimize the collateral damage to my family. Minimize the impact of my rsd on their lives. The physical damage and limitations are beyond my control. The emotional fall out is what I try to hide. What I try to keep to myself. I want to support others and sometimes I'll need some myself. I'm looking for some friends here and looking for opportunities to be a friend. ((hugs))~Diane

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

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

Hi Diane and welcome to the group. I'm sorry you need to be here but it's a terrific group. I've only had CRPS for 16 months so I'm a relative newbie. Like you, I try to tough it out and hide the pain. That is probably true for many of us.

CRPS affects us all a little differently but we all understand what it is like living with the pain and all of the other stuff that comes along with it - the exhaustion, the painsomnia, the isolation, the limited function, etc. I know that my pain is upsetting for the people closest to me and, let's face it, not so easy to understand for most people. Here, I don't have to explain myself and I don't have to pretend it doesn't hurt.

I hope that you find the same comfort and support here that I have found.

KimA

Welcome, Diane! ~Lottie

Hi Diane!

You found the right place!!! Hope your having low pain. Welcome to the place where everyone understands what it is like to live with the monster, and is always there to support and be a friend

Hi Diane,
Welcome so sorry it's for reasons of having RSD but everyone here are just wonderful people wiling to help, listen etc. I just wanted to say a quick hello & welcome you to our great group of people if you ever want to chat feel free to email me anytime. talk soon I hope, have a wonderful day

Welcome, but sorry for the reason you need to find us.
I think this is a WONDERFUL group! We've all been through
some tough times physically & emotionally.
In the beginning I did a lot of reading & research to
catch up.
Di in AZ

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

Thank you eevo. It's so nice to 'meet' you!