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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: 6 days ago | Replies (349)Comment receiving replies
Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.
Replies to "Wow! I too have a similar story, only mine is truly in my head. A stroke..."
I have CRPS . I have just injured my knee by twisting it ever-so-slightly. But because i have CRPS from the hip down on the left leg which is the one with CRPS. It has agravatted the crps. So well i am in extruciating pain now all down my leg rather than just my knee. The leg has a real issue with hyper-sensitivity all the time. Even a wee bang on the leg is 100x more painful than it should be for the injury. Anyone else have the same problem with hyper-sensitivity and terrible nerve pain from a lesser injury? And should i tell my GP i have injured my knee which has intensified the pain in my whole leg. All this whilst suffering with clinical depression and anxiety.
Gosh i really hate this chronic pain disease.
Hi @daddylonglegs, I've been following your messages on Connect. First of all welcome. Second, I'm sorry to hear that you just injured your knee and that with CRPS, a slight twist is a big deal of pain. While I don't have CRPS, I would think it is a good idea to mention this hyper-sensitivity to your doctor. Do you only experience the hyper-sensitivity in the leg or elsewhere too?
I read that you are a lung cancer survivor, too. I invite you take part in the discussions in the Lung Cancer group. Would you like to start by introducing yourself here:
Living with lung cancer - Introduce yourself & come say hi https://mayocl.in/2m0p4ZO
Pain and depression often go hand-in-hand. Several members of the chronic pain group also share in the Mental Health group. https://connect.mayoclinic.org/group/mental-health/
@daddylonglegs I would suggest you have the knee checked out by your GP at a minimum. With the CRPS, it may be worse than you you would ever know because of the all over leg pain. If that is the case and if it is not addressed, even if your CRPS gives you a few easier days, your knee may still cause remarkable pain. I do know that the last thing any of us who see way too many dr. offices regularly that we hate to go for any "new" reason, but it could do more harm in not going. I do hope it gets better regardless of how you address it.
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Gosh i am so sorry to hear what you have been through. I forgot to mention on my original post that i was diagnosed with lung cancer in 2015.(thought i had pulled a back muscle that didnt get better with time) i ended up having tumor attached to my ribs that apparently was the size of your fist. I had a lobectomy and a resection(removed left lower lobe and 4 ribs) and patched the area. I had 1 session of chemo and ended up in hospital sick as a dog. So i didnt want to end up killing myself to live. I have my third annual xray this may. And every time they come around i get terribly stressed and scared to death as thr drs.told me the type i had was a very aggressive type of cancer. So aswell as this coming around annually and the high stress my crps tends to act up alot more. I will give what you said a try