Want to talk with others. Have you found relief from CRPS?
I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.
Interested in more discussions like this? Go to the Chronic Pain Support Group.
I am so surprised to hear how many people have this with no treatment. Italy has a treatment and if we have to sell our house to try we will.
It is tough working with our medical coverage especially the HMO's. A lot of Drs. like to write prescriptions and hope you just go away. This is one of the worse diagnosis I have heard about it. I think my Grandaughter will be going to Italy to treat this. After Reading this and doing research its all the same treatment and no results. In Italy the Neridronate treatment is all I can find, that has had a lot of results.
Hi I am back sorry to tell you that nothing has been done to help me with what was done the only thing is I have found out it was done on deliberately because of some misguided government crap about pain medicine I was on the same medicine for over twenty years with no other pain medicine but they have decided that no one should have medicine over a set amount I have found that a lot of other people have had the same thing done to them some with their knowledge but a lot just like me without any warning when you do everything right you still get shit
Hello and glad I found you. My 62 year old daughter is not just coping with pain but also nausea, slow motility, headaches and severe cramps in her abdomen. She had bariatric surgery one year ago. Her specialists point to the probability that it is vagus nerve syndrome but they have no suggestions other than that.
She is also excellent at research and we both have come up with the same list of tools that you have. They are mentioned all over the web. She has corsense to monitor her condition plus a blood pressure monitor. One person in this forum suggested checking (acronym) IFFGD and i highly recommend that Foundation. Please keep posting as perhaps we can all put this together for each other.
Hi,@nam14, I have crps,and relief is a little hard to explain, but here it goes. Yes and no, let's start with "yes" . I started about 20years ago meds, injection, tens,and physical therapy. You will have to find a combination of many things to get the relief. Now it can go away if they are treating it right away. If that is what you are doing then you have a very good chance of it going away. The "no" is that it might not go away, l am sorry for saying that, but it is a possibility. If that is the case, the pain will not go away, but you can get treatment that can help ease the pain. For me I have a spinal cord stimulator, and a combination of meds and physical therapy and talking to people who are in the same situation helps. I hope this helps you with your question, I would like to tell you about my journey with this, but maybe another time. I hope you are doing well and you have a pain free day and think of happy thoughts and know you are not alone in this.
Hello mam14, I believe that I may have crps. along with fibromyalgia.It started over two years ago I told my doctor over and over again that it was more than fibromyalgia, but who am I ?
I changed doctors last September. I have seen a neurologist last January testing was negative but the pain is definitely excruciating nerve pain from my head to my toes. Had a mri of brain looking for MS , negative. I have electric shock pain,burning,aching twenty four seven. I am being seen at St Mary’s Physiatry which is pain management. I am having a Cervical Rizotomy on the twenty eighth and am waiting for an appointment for a Rizotomy for my knees. There are treatments for nerve pain relief without medications.
Hi, I have found relief with retraining the brain with positivity. There are many great books on how to do this. I have also used Ketamine Infusions. They are rarely covered by insurance and are real expensive. These are only tools and are not cures. I have CRPS II almost full body. There are a 2 face book groups with positivity. Stay away from the negative groups. Positivity with CRPS/RSD.Org is a great group. Another one is P neuropathy success stories. Other neuropathy groups are negative and tend to make me feel worse yet compassionate towards the person suffering. Not allowed to post any other groups to those sites. I hope you find the positive groups. You will find so much help. your friend, Doreen
@drorvick Hello Doreen, thank you so much for posting about your experience in managing CPRS II and providing helpful, hopeful tools. I'm sure many members are grateful for your information.
The 2 Facebook groups you're involved in sound inspirational. I'd like to introduce you to Darryl, @drg24242 who also suffers from CPRS and is going through a difficult time. He may benefit from these groups.
I admire that you work on retraining your brain with positivity. I've had more success managing my chronic symptoms since doing the same. I've found that sticking to new routines and beliefs such as positive self-talk, daily stretching, mild cardio (walking or riding a recumbent bike), and low impact weights and resistant bands, even when I didn't feel like it, was eventually game changing. It has allowed me to rewire my brain.
Neuroplasticity is amazing, isn't it. We so often forget because we're consumed by our pain and allow it to overrule us, that we possess the most powerful tool inside of our head. Our brain is a computer and definitely can be rewired.
Doreen, how do you handle difficult days? What is your best advice to get through them?