Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Feb 08, 2016 12:01 AM

Hi, I'm new to this site .I got complex regional pain syndrome when I was 7 .I'm in pain every day but I still do the stuff I Love even if my pain is a 5 I still go out and hang with my friends just because people can't see our pain doesn't mean it isn't there if you have a headache or you just feel bad that doesn't mean you can't go get some fresh air.today is new day and tomorrow will be better

Feb 08, 2016 6:06 PM

I have had CRPS for almost three years now. I got it from breaking my right fibula and the CRPS was just in my legs until last year May when it went full body! I have had chronic migraines since I was 13 and I'm 21 now. The CRPS have me terrible tremors so I take muscle relaxers all the time. I don't take pain killers because they don't work on me because of my genetics. I deal with the pain by telling myself I can make it one more day and smoking medical marijuana.

Feb 08, 2016 6:06 PM

Welcome to our community Horsesnuggler12! I'm sorry you've been sick so young. I don't have CRPS, but many here do. I'm 54 with multiple diagnoses that cause chronic pain; some for over 25 years. I worked until 2010 when I needed surgery for a large benign mass, turning into 5 in 1 surgeries. Then I began developing problems and getting diagnosed (dx) with one after another, three being auto immune (AI) diseases. I try to stay positive and find something to be grateful about, even on my worst days. A year ago I realized how weak I'd become so I began trying to walk on a treadmill, and although it's a slow process I'm making progress. I'm also learning to take outings for fun, instead of just to the doctor. Lol. I live in GA/USA so most of the time our weather isn't too bad. But big fluctuations cause flares of my fibromyalgia, sjogrens, and Arthritis. I also have degenerating disc disease all down my spine, especially the neck and Lumbosacral areas. I know your L5-S1 pain!

Tell us a little more about yourself. What are your hobbies? Are you still in school? I hope you settle in and find as much support and helpful information here as I have. Hugs, love, & prayers you have more good days than bad! 🙂🙏💕🌼

Feb 08, 2016 6:09 PM

Welcome! I'm pretty new too. I have CRPS too. Others in the site as well. So sorry you developed It so young!!! I developed it in my 30s after a work accident. 😖 Insanely difficult at first but I was lucky to find a good doctor pretty quickly. Its still very hard but after so long some things are easier, some are harder. I'm lucky I can still do a lot!! Some folks have it much *much* worse 😧 and they can't "push" through. It's too hard for them. Their symptoms are more severe, or their treatment isn't helpful. CRPS is Sooo different for everyone... And the treatment available is so different. I think because I got good treatment very quickly (and have been able to keep that treatment), I was able to get to a stable place more quickly. Soooo many people can't find good doctors... It's not right that people can't get good care!

Feb 08, 2016 10:50 PM

I love horses and yes I am still in school I ride 2times a week and I don't tell my mom if it hurts because I know if I push through that I can see my favorite horses at the end of the day I'm ok .

Feb 08, 2016 11:52 PM

I also have CRPS. It was caused by an accident I had at school. I was 13 at time. I love horses too. I used to train horses and do parades with them before I got hurt. Im so sorry for all that you have been through. We are all here to support you in anyway possible. Welcome to our friendly community 😊

Feb 09, 2016 12:14 AM

Welcome horsesnuggler. I have it as well in my ankle. I developed it after a pony cart driving accident. I have good days and bad days. Ride safe horsesnuggler.🐴

Feb 09, 2016 2:43 PM

Horsesnuggler do you have a 504 plan (K-12) or disability accommodations (college) to addrss any health needs that occur st school or affect school? I work in schools. I am surprised that many students suffering do not have accommodations at school. These accommodations are available to any student with a documented medical issue. Extra time, modified ( as in shorter assignments), change of schedule...and many others are available. I am happy to answer any questions if needed.

Feb 09, 2016 7:09 PM

Got in fight with my so called friends at school hope my pain syndrome doesn't flare .uggg sooooo much homework I was hoping to go throw the ball with my stepdad today but I have two science packet due tomorrow and two pages of math due Thursday plus I have riding tomorrow and I don't have time for extra homework.

Feb 09, 2016 7:12 PM

My parents are working with my counselor at school to set up the 504 and thank you Gardener

Feb 09, 2016 9:26 PM

I'm glad your counselor is helping you with that. You should definitely qualify for reduced in-class and home work assignments (for example 10 math problems instead of 20). Teachers can modify assignments for you as well (if 3 book reports are required for the quarter, you can do 2) . The idea is that you still learn the material but reduce fatigue and leave time to heal. Breaks during classwork or tests as well. You can also request special timing for tests- if mornings are terrible because you hurt- you can have your exams in the afternoon. If sitting for a 2hr exam is too much you can have it broken into 2 days. If you miss assignments, you should have time to make them up or be excused. Some schools fight these accommodations thinking you should "push through" like everyone else. You already push through enough! These accommodations are federally mandated, you are entitled to them. This doesn't mean kick back and don't work (that doesn't sound like you!) It means pacing and breaks as needed. It means time for home work and riding! You need to be active and do things that improve your mood! Those are valid activities! Let me know if you have any questions or problems!

Feb 10, 2016 7:48 AM

Horsesnuggler, I am so sorry that you deal with so much pain. It must be very difficult to deal with pain, school responsabilities and homework. I am quite a bit older than you and the only sanctuary that I find from my pain is being around horses. I had two horses years ago and have been in the market to buy another one even though I really can't afford it and I don't even know that I can ride any more due to my pain levels. When I'm around horses though, nothing else in the world exists. My hands on one of these magnificent animals transports me to a place of total peace. (I pay highly afterwards but it's worth it). I hope that you are always able to keep horses in your life. We ALL need to have something that we love more than anything else and we all deserve it as well. I know you'll manage to get done what you need to... Don't stress over your fight with your friend. If you're true friends, it'll pass. There is NO relationship that is without its bumps and bruises. Keep your focus on what you need to get done and always keep that joy you feel in your heart while riding close at hand. {{{{Hugs}}}} 💕🙏🏻🌻

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