Finally have a great team of Dr's
 

Hi everyone,

I have been diagnosed with CRPS for about 10 months, however it may have actually been going on for several years. I had a silly slip down some wet stairs and did an amazing acrobatic fall and partially tore some ligaments in my foot. Fast forward to....CRPS.

I have managed to surround myself with an amazing team. I have a physio therapist with CRPS knowledge who does acupuncture on sympathetic points, a great neuro (who has helped me with post concussion syndrome for 8 years), a pain specialist/anesthesiologist who does lumbar sympathetic blocks with ultrasound and sedation every other month and a family dr who oversees everything. I have also connected with PARC who has amazing information and support.

I have been doing the anti inflammatory diet, taking supplements, exercising and doing as much as I can to stop the progression.

But....I still have those days when I think....why the heck did this happen to me?? (although I use much stronger language when I say that to myself).

Its exhausting, but I think that it has made me re-look at my life. I have learned as much as I can so that I can have more control. Even though there are limits, I will find a way to live as normally as possible.

I lived in Africa for a while, and if there is one thing that I can say....I am so fortunate to be born on Canadian soil. I would not have access to the medical treatments, the access to these doctors, and the access to the literature that is available to help me deal with this.

My heart goes out to everyone dealing with this, and since I personally do not have any friends with this (which is good) it leaves me feeling isolated as they can't quite understand the pain.

Thanks for reading and allowing me to rant.

This is the place for us to rant, so please don't feel sorry for doing so.

Being an uncommon disorder, it is not surprising that you do not know anyone that has CRPS besides yourself. Before coming on to this forum, I didn't know anyone either. I have made some friends here, even some outside of this forum, that deal with CRPS. Having somebody to be able to talk to that can relate to what you are going through has helped immensely with ridding that feeling of isolation.

I am glad that you have found a team of doctors that you feel comfortable working with. You have made some great decisions to retake control of your life again. I hope you know that there are a number of people here on NT that very much understand what you are going through, are willing to offer support, and hopefully can help you feel at least a little less isolated.

Many gentle hugs to you.
:hug::hug::hug:

You're welcome! :)

I live in Belgium, and we have excellent health care as well. For a while I had to pay full price for my Neurontin (I remember those days), at €40 a box (for 10 days' worth of medicine). Now I pay between €3-4 a box as it became insured (general governmental health care system). A lot of difference for me.

But I can't begin to imagine what it must be like in other countries.

Even though we still have CRPS, in a sense we are luckier than a lot of other people, at least where health care is concerned.

Hope you're doing well. Stay strong & hang in there!

Tengboche, thank you for sharing. You expressed many of the same feelings that most of us feel at one time or another. Forums like this help bridge that gap between friends and family caring but not really understanding what we are going through.

You are indeed very fortunate to have good healthcare. Too many people with CRPS have to deal with high deductibles, high copays, workmen's comp, or absolutely no insurance or access to knowledgeable doctors. Sometimes we just need to count our blessings as you just did.

Sending warm thoughts your way. May you always know that there are others here who understand.

Shay :hug:

Having the right doctors is so key...so glad you have a team that you trust to help you through this difficult journey. We all have those hard days...but I admire your strength and the fight you clearly have. I have posted my share of rants on here...it is a necessary part of the process of dealing with this. We all need a safe place to vent and get our thoughts in order. I know posting here often helps me sort out my thought and helps me make decisions...not to mention the wonderful support I've received from others on here. Take care and keep us posted on how you are doing! Hugs!