Where Can I Find Help…?
At the start of your chronic pain journey - whether already diagnosed with a chronic pain disorder or still suffering undiagnosed pain - it may be extremely overwhelming to begin your trek through the mountains of information piled up out there.
Obviously in my case, this held true when I was first told I had CRPS/RSD, but from my conversations with other sufferers, this appears to hold true for many other diagnoses also.
Oh, maaan! It’s hard enough to even rally yourself out of bed in the morning, no? How are you then expected to navigate through facts, fiction, negativity, & just plain ignorance?! No wonder your joints are creaky and stiff with exhaustion. Oy!
Have no fear, however! There’s no more need to go it alone. Here are some helpful resources for chronic pain that I’ve managed to find throughout my journey. Take a browse by clicking on the names! I hope they help:
- RSDSA: Reflex Sympathetic Dystrophy Syndrome Association - Find definitions, treatment, events, new research, resources, and ways to donate.
- PARC: Promoting Awareness of RSD & CRPS in Canada - This particular page has fantastic information on alternative therapies (but is not perhaps the most thorough otherwise).
- CRPS/RSD Video - If you’re just starting out, this Youtube video does a great job at explaining very simply what CRPS/RSD is.
- American Pain Foundation - Moving away from CRPS/RSD specifically , you can find loads of information about many different pain causes. Learn definitions, find support, donate, get informed or even involved, etc. This site may even lead you to a pain provider (though again, be cautious - in terms of this, I find it best to go on recommendation or do MAJOR research).
- American Pain Foundation: CRPS/RSD - Of course, if you do suffer from CRPS/RSD, the American Pain Foundation does have a very thorough page for us, and you may find it here…
- Pain Connection - They focus on the psychological side of pain for both patients and their support system. While you may not at first hold this to be your first priority, perhaps have another think. Maintaining hope, faith, and positivity is SO essential to fighting the good fight! How are we to do so if our minds are not clear and healthy?
- Invisible Disabilities Association - “But you don’t look sick…” Oof!!! If only I had a penny for every time I’ve had to explain my invisible illness upon hearing this phrase! Find strength in knowing there’s an entire network feeling this way also! Let’s spread the word and make ‘invisible no more’.
- Good Days: Chronic Disease Fund - Having faced insurance issues myself, I know what a pain (I looove a good pun!) it can be! Good Days helps to get patients the breakthrough medications they need in order to have - what else - good days.. You may donate here also.
- The Project3x5 - While scientific information is nice and certainly important, sometimes while suffering, you may crave a more humanistic touch. The Project 3x5 is my personal pain blog and offers just that and more. I feel that there’s a staggeringly low awareness level for the debilitating & incredibly painful condition of CRPS/RSD. The Project3x5 hopes to be a source of hope, positivity, fun, accurate information, and possibly even inspiration through the daily happenings of my own silly little life.
- The Project 3x5 on YouTube - My YouTube channel gives personal insight to the daily challenges faced by someone fighting the painful chronic illness of Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy (CRPS/RSD). Find vlogs and videos of personal moments (whether positive or negative) that will make you feel as though you’re fighting along right there next to me.
I’ll keep this relatively simple for now so as not to overwhelm you further, but should you need to find these links anytime in the future, just look to the yellow box on the left and click ‘RESOURCES’. This section will be ever-evolving as I find new sites, so be sure to check back.
Good luck :)
Lots of love,
Danielle, The Project3x5