The Pain in CRPS

I would say the pain is not possible to describe. I do mine on a scale of 1to 10. But the pain itself could be burning, tingling, or stabbing. I write every thing down every day . I write down the weather, how much stress I have any changes in my health. This disorder sucks. No one person I've spoken to on this forum seems to say the same thing. So I only can pass on what mine is like. I also have several other health issues. So I just go day to day. And try to find a good day and do something special for myself...I'd suggest you try the same. Keep talking and best wishes.

@rsnowflake

A diary is a good idea. I haven't done that. It would be helpful when seeing a doctor. My days are busy and there is much to do even with the pain. I also have others to care for - a husband and a granddaughter occupy much of my time as well as learning how to best deal with the situations that come up. I am also learning a lot spiritually and that continues to be an exciting journey. Have a great day.

I have CRPS Types 1 and 2, with my right leg being the primary location, and specifically in the knee area. That's where the discoloration, swelling, pain, allodynia are centered. The burning and skin changes now have spread throughout my right leg. I'm also noticing the start of issues in my left knee/leg as well. This nightmare began on 8/23/2016, although not due to the usual causes. I've begun keeping a photo diary, in addition to noting factors such as activity, stress, weather, mood, etc. The photos are very important to me, as they allow me to compare the visual manifestations of my symptoms over time. Additionally, the appearence of my knees/legs varies greatly over each day, as well as day to day. Having the photos provides my doctor with the ability to see the visual aspects of my CRPS, regardless of how they look at that given moment when a provider looks at my knees/legs in an office visit. Hang in there! Research reaseach research, as knowlesge is power, and you NEED to be your own advocate.

I have crps type 1, was diagnosed about 2 years ago. Broke my ankle in 3 places and that's where my nightmare began. I was extremely lucky to be diagnosed early. I tried gabapentin , nerve blockers , but they all failed. I have a spinal implant and it saved my hand. Mine jumped quickly from leg to arm then after implant to other arm, but they had already put leads in for both arms. Unfortunately now it's in my spine, I use medical marijuana to help when it's really bad. I also keep a diary of every thing and pictures. I try and tell others that have it to really enjoy the days when u feel good. Do something special for yourself!! I'm here to listen and compare whatever anyone has to say! Keep in touch if you want. I'm always checking the posts . Good luck!!

I just recently got diagnosed with CRPS Type 1/RSD. It’s very aggressive and extremely painful. It’s in my right foot, ankle and leg from the knee down. I had my foot and ankle operated on twice, most recently in 2018 and the RSD bloomed from that (according to four different providers that I have seen). I also sprained the same ankle 20+ times as a gymnast while as an athlete and a coach. So from the combination of the surgeries and the many sprains I had, My doctors are rather concerned. I am the beginning stages of treatment and honestly, my hat goes off to those who have dealt with this disease/disorder for many years.

I have started a journal of what goes on with my pain along with what others have listed in this specific forum. I list my pain on a scale from 0-10. My pain never goes below a 7/10 EVER. It’s very uncontrolled and extremely distressing (to say the least). My advice to you and those who are stricken by this nasty disorder is to find immediate medical attention by your PCP and then go from there. Research your symptoms but do not get obsessive over it. Do not self diagnose yourself, that’s the worst thing you can do. Keep an open mind. When the four providers I saw all agreed with each, I knew I had a big problem. That’s when I started researching what RSD was.

My pain management doctor who has taken over my case totally has started me out with aqua therapy, lidocaine infusions, and Gabapentin for the pain (so far). Needless to say, the Gabapentin isn’t doing a darned thing and I’m afraid to say anything to my pain doctor for fear he thinks I’m drug seeking. I am not, at all. I just pray for 30 seconds of relief a day and haven’t had it in a while. At 34 years old, I should NOT have this going on.

I hope and pray all of you this read this find relief in your CRPS diagnoses.

Yes! I agree! Go buy yourself something. Treat yourself to dinner or something...even if it’s just once a month. Reward yourself for being the warrior you are. Good idea!!

Hi, @marksholl, and welcome to Mayo Clinic Connect. That sounds terribly difficult that your CRPS Type 1/RSD is very aggressive and extremely painful, and that your pain never goes below 7/10, ever.

Hoping members like @tunajon @barbbie @rsnowflake will return to offer their support with your new CRPS diagnosis and offer any tips or suggestions on this journey. I'd also like to invite @rags @mam14 @cm49ers into this conversation for their insights.

Are you considering telling your pain management doctor that you aren't experiencing any relief with the gabapentin, despite your concerns he could think you are drug seeking?

Hi Mark! I'm Renee. We sound like 2 peas in a pod lol. U have 2 try and laugh at something with this horrible disease!! I was diagnosed a little over a year ago. I started with a broken ankle 6 months b4 my life changed forever. I made it through a very long journey with m y ankle 9 months in a full boot. I was so happy to start physical therapy. But my foot and leg started to turn purple and swell. Then I went 2 my orthopedic surgeon and he happened 2 have a co worker who research ed crps 4 two years. They immediately sent me 2 a pain management doctor. I got 2 nerve blockers in my foot and leg and it worked. Little did I know how this disease totally is like nothing else. Jumped to left hand and arm with in 2 week s. Nothing worked gabapentin a total joke. Then nerve blockers no luck. Hand was in atrophy and my doctor booked and immediate trial spinal stimulator implant. I wa s about 2 lose my hand and scared as shit!!!! The trial gave me my hand and ar. Back within 3 hours I was amazed
He booked me for an implant 4 days later. The surgery was tough and recovery. But it was great, until it jumped to other arm within a month. The put 2 titanium leads in so the were able 2 just turn it on. Unfortunately it's now in my spine. But I can control some pain in hands and arms. I also keep a pain journal . My state has medical marijuana which has been a life saver.
U can talk 2 me any time. Keep some faith. I also due allot of medical research I do, so if u want 2 find out anything I can try to help!!! Best of luck..and I am only a few years older than u.

My daughter was diagnosed with CRPS several years ago. I did some research but this information I am going to tell you about was honestly given to me by my angels. If you will look up Calmare Therapy or Scrambler Therapy. This is what we used to treat my daughter's CRPS. It worked!! It is not an invasive treatment. Please check it out. It is "scrambling of the nerves" taking the pain away. I'm not sure if it is covered by insurance companies, but about 8 years ago this therapy was in a trial with the DHS. It is amazing. I hope you will check it out and find a certified doctor for this therapy. Good luck and God bless you. No one should have to endure this type of pain.

I have had shingles for 6 years on my buttocks. Which left me with CRPS. It finally left in 2019. with some bouts of burning in legs, but that was it until now. I recently had to have 3 cervical epidurals for nerves pressing on my neck to my arm. Now the burning on my buttocks came back. No shingles, no redness, just hot.

I have found 2 things, that help Pennsaid Oil 2% . Its very expensive, insurance may cover it, if you do a prior authorization, and then Aloe Vera Gel, pure gel . Walmart sells it for $4.95 a 32 ounce bottle. It seems to
keep the burning away or calmed down right away but it returns . So you must keep on applying it.

I wish all who have CRPS pain free days.