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
