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Jan 24, 2016 11:42 PM

Hi everybody, My name is Tristin and I'm really new to this. I have been suffering with RSD/CRPS since I was 13 and have never been apart of a support system. Is there anyone who shares this same disease that is maybe willing to talk about it? I would really appreciate some insight.

Jan 24, 2016 11:49 PM

I have CRPS II / RSD since 2006. Multiple surgeries. This is one resource but with social media there are many resources available for you.

Jan 24, 2016 11:53 PM

Ive never really had any luck. I keep finding pages that are not really support groups but more awareness and informative. I will continue my search though. Do you have any suggestions on how to cope with some of the pain though? I am only 20 years old and I often find it hard to struggle through the day or to be as good as a mother to my baby as I would like to be.

Jan 25, 2016 1:16 AM

Tristin, welcome to our community family. This is a safe forum of very close knit people who suffer chronic pain. We all have different diagnosis but all share chronic, daily pain. Know that we are all here to help one another. Social media may have some information but as you said, some pages have nothing or little to do with what you are looking for. I have several issues including CRPS/RSD and it is certainly debilitating at times. I have it so badly that it covers most of my body. I've also had 29 surgeries and this wretched disease had settled in each and every place that I've had surgery (including my mouth). There are many people here that suffer with RSD and I'm sure can offer better suggestions than myself. Even though I have this problem, the usual meds they prescribe have not worked for my nerve pain. They either didn't work at all or gave me such horrendous side effects that I couldn't take them. There are times when the burning is so bad and my other pains are so over the top that I become delirious. Lack of sleep from pain is also a hinderance. I'm almost always exhausted. I hope that by being here with us you will find the information you seek. There are more and more young people such as yourself joining our family and it saddens me. I've been in pain for 23 years and have only gotten worse and symptoms change and more and more areas have pain. It's not like that for everyone, I'm speaking for myself. So, welcome to our community, settle in and read the posts and join in on conversations. I am sure that you will find the group to be very helpful. Sending you gentle {{{Hugs}}} and prayers that you get to see doctors that are able to help you. Best wishes. πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jan 25, 2016 9:44 AM

Thank you sooo much!!!! It is nice to finally takk to people who understand the physical and mental pain of which comes with this terrible disease. Unfortunatley I have received no medications or therapy for my pain. They inly thing I have access to is medical marijuana. It helps alot and doesnt make me sick. But it takes away almost all of my pain as well as the tingling, numbness, the burning and the constant aching. Or those that have access to it I highly recommend it. I was really against it until I was in so much pain that I decided to suck it up and just try it. Ive only had 1 surgerie but it was not for my RSD. Due to conflict with the people resposible for my life long condition of which was a result of a terrible accident I have not been able to receive adequate care. Thank you all so much for the warm welcoming. After so much hell it is nice to finally have people who understand and care.

Jan 25, 2016 9:45 AM

I apologize for my spelling my child thought he was helping mommy type.

Jan 25, 2016 10:36 AM

Tristin, I have had CRPS since 2013 and I'm 21 currently. This is not an easy disease to deal with but what has helped me the most is my spinal cord stimulator by Boston Scientific. I have four leads that stimulate my legs and getting a paddle put in this year that will stimulate my back and arms. It really relieves the pain without using medication! I hope you can open up with this group and find some relief knowing you are not alone!

Jan 25, 2016 9:07 PM

Welcome Trusting! I don't have RSD/CRPS. But I have many dx that cause chronic pain. However, you will meet many here with the same dx. I battle depression & anxiety as well, as most of us do. You'll find lots of support, advice, shoulders to lean on, ears to listen, and prayers if needed. And if you need to vent that's OK. We can't be expected to never feel frustrated or angry with all we deal with. And this is a safe no judgement zone. Hugs & prayers you'll feel welcome and be able to get the support you need here! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 25, 2016 9:51 PM

Thank you all so much!!!

Jan 26, 2016 1:50 PM

Hi Tristin, I have CRPS too. I'm 15,and our had gone mostly into remission.

Jan 26, 2016 4:57 PM

That is great to hear!!! Im glad that you were able to get treated in time! Im sorry that you ever had to deal with this terrible disease.

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