Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

Rsd

Mar 08, 2016 6:59 PM

I just found this app. I have had RSD since 2003 to 4 years for me to be diagnosed who else here has RSD

Mar 08, 2016 8:14 PM

Welcome tell us more about yourself. We are a large group of fun loving people who learn from and teach eaxh other. Feel free to observe and interact as much as u want. We look forward to hearing more about u.

Mar 08, 2016 8:16 PM

Welcome to our little chronic pain family! I have RSD/CRPS and Lyme disease. I've had the RSD for 3 years now and I have no clue when I got the Lyme. I want to try ketamine infusions to help the pain since nothing else has helped my nerve pain. I like having this app to vent and see how other people deal with the pain.

Mar 09, 2016 12:25 AM

Hi, I've had crps for 7 years, welcome to this wonderful community.

Mar 09, 2016 1:14 AM

How are you managing your rsd pain. I have had it for 12 years.

Mar 09, 2016 2:04 AM

Welcome Momof4, I do not have the same illness as you (rsd) but my illness results in chronic pain. New to this app and also the chronic pain world as I have had it for just over 3 years. They have not been able to get my chronic pain under control yet. But Good News, I just got a call from the Pain Management Cllinic. ... So we will see. Again, welcome!

Mar 09, 2016 9:37 AM

Momof4, welcome to our community family. I am glad that you found us. I have CRPS/RSD and was diagnosed several years ago. It's a nasty disease and I feel bad for you that you've been diagnosed with it. I went through 3 nerve conduction studied over a few years when I was finally diagnosed. Unfortunately, since I have several other issues like DJD/DDD, I have had 29 surgeries in the last 23 years and it has settled into almost every place that I had surgery. There are many people here who will share their experiences with you and will also be there to support you through the bad days. We pray for one another, support one another and celebrate the small victories we all have.. Most of all, we laugh together. You'd be amazed at what a wonderful thing laughter is. I love to come here and chat with my peeps and help whoever needs it and I also love to put a smile on someone's face and make them giggle, it makes me feel good as well. I hope you settle in and meet a lot of new folks that you can share info with. Know that this is a no judgement zone and you can vent and we will understand. We all have bad days that we need help to get through. Sending you welcoming, gentle {{{Hugs}}} and prayers that you find this community helpful in days to come. 💕🙏🏻🌻😊

Mar 09, 2016 4:48 PM

Welcome Momof4! I don't have RSD, but I understand chronic pain. I hope you find the support & answers to help you cope better!

Mar 09, 2016 8:27 PM

Welcome momof4, I have crps going on 3yrs I have had 8 to 10 nerve blocks, a spinal cord stimulator surgery implant, and now I just got approval to have ketamine infusion in May. I am hoping for the best.
Welcome to our community

Mar 10, 2016 12:30 AM

Thanks one and all. Went to new pain dr yesterday. I thought he was wonderful. Recommended by my neurologist, who is a saint. Made huge mistake forgot to tell neuro to talk with new pain dr - my old one that was amazing retired. Got there had really good feeling about him. Then he says he doesn't think I have rsd. That it is related to my spine. Agreed to let him give me 3 nerve blocks in my sound for my ribs. Not a walk in the park. I had never done nerve blocks didn't think it would work because my area is so spread out. Actually asked me after block would I consider going back to work now that he had fixed me. That really shocked me. Been unable to work or have any normal life for 12 yrs. at that moment the pain in ribs had stopped. Asked how long this should last. He says min 8 hrs. Didn't even last the 15 min ride home. Now not only all old pain back but now it has spread again. Called neuro explained situation. She was very upset explained that he is s good doctor but a lot of pain dr don't really understand rsd and want to always try new things not because of relieving the patient pain but because they make more money on certain things. To one and all. Find at least one or two Drs you can trust. Know what works and don't be afraid to say no to treatments that they say will work. Have tried everything over the years every new thing had increased my pain and caused the rsd to spread. Most Drs don't understand that I need meds to control my pain. That is only thing that works. Was going good for few years. Yes I had some bad days but Good definitely outweighed the bad. Then because of hormones and premenopausal stage dosage most days doesn't work at all. Giving new pain dr another try now that my neuro has spoke with him We need to be our own advocate because not all Drs know or want what is best for us. Good night. Going to try to get some sleep.

Mar 10, 2016 4:54 AM

Momof4, I'm so sorry your pain has come back and spread after the blocks! I dont know why they continue to give those to CRPS/RSD patients because the same thing happened to me when they gave me a nerve black in my leg three years ago! My pain just went up my leg and in my back and in my arms! Now I have to wait for them to treat my Lyme disease before they try to treat my CRPS again. I hope you find something that helps your pain! I see you have children which is great to have a support system! Good Luck finding something that helps this evil pain!

Mar 10, 2016 5:17 AM

According to a 2012 scientific study called "Systemic Complications of Complex Regional Pain Syndrome"by Robert J Schwartzman MD, out of over 500 patients, both crps1&2 groups had 65% difficulty with repeating numbers backwards, delayed recall and semantic fluency. This means 65% of us with CRPS/RSD are loosing our short and long term memory from the pain! There's so much to read on this article so if you google the name and author you will learn more!

Mar 10, 2016 7:58 AM

Meganblondie, thanks for that info!! I'm going to read that article. I'm always looking for new info on this insidious disease to try and help myself dealing with the pain.

Mar 10, 2016 11:23 PM

I was married for three years with two stepchildren that are the sons of my heart Really wanted our own children together I was almost 40 and had pretty much given up. One afternoon my husband and went for a short boat ride. One hour later I was being airlifted to stony brook hospital. Bi almost died that day but I truly believe that if it wasn't for that accident I would never have gotten pregnant three months after the accident we discovered we were expecting. I will take this pain and embrace because I truly believe that if not for the accident I wouldn't have gotten pregnant. And even if I by some miracle did get pregnant I never would have considered staying home to be with them 24/7. God has a plan and a sense of humour. Definitely not nearly the person I was but now we have two beautiful girls to go with our amazing boys. So pain is unbearable sometimes but I try and concentrate on the wonderful things I do have.

Mar 11, 2016 11:32 AM

Yes indeed, I totally get you, I have a 5yrs boy and a 10yr old, they keep me going even days like today I can't go into work, but the kids cheer me up.

Mar 11, 2016 2:09 PM

I used to nanny a little 1 year old when my CRPS was only in my right leg and it really helped get me through the pain playing with him every day! I love babies/children and how happy and excited they are all the time! I can't babysit or nanny or work anymore for over a year now though. I miss it.

Mar 11, 2016 2:48 PM

Hi I have RSD had it 10 years . It's so lovely to find a group with RSD

Mar 11, 2016 3:40 PM

I've had crps/rsd for 9½ years now. I'm now 30 years old.
I'm Canadian and have had wonderful doctors treating me and am doing pretty good lately.

Mar 11, 2016 3:43 PM

Wot CRPD or RSD ladies? I've got good old fibro and CFS &IBS. All these acronym make my head spin. Good luck Mumof4 I've just been accepted to go on a residential pain management for 4 wks but unfortunately won't start for a few months yet.

Mar 11, 2016 8:53 PM

Dolph1nmum, CRPS/RSD is known as both Complex Regional Pain Syndrome and Reflex Sympathetic Dystrophy. It's an autoimmune issue and it tells your sympathetic nervous system that there is pain in many areas. I can effect you skin, your joints, muscles and organs. It causes very bad burning sensations and sometimes it's so body covering that you wanna scream. There are many articles on line for this horrible disease. Hope I was helpful to you {{{{Hugs}}}}💕🙏🏻🌻

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