Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

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.

@neverrest

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

Jump to this post

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.

REPLY
@faithwalker007

I was finally diagnosed with CRPS Type 2 (permanent nerve damage of the lumbosacral plexus) by my neurologist at 6:30 pm in his office after a six-hour appointment, multiple tests, MRIs, and consultation. He's a Christian and thoughtful, kind man who refused to give up. He was the eighth provider I had seen in a year and a half. I had been told that the excruciating pain, abnormal gait, numbness, burning, well, this list goes on, was "in my head," "would subside with rest and time," "was part of the knee replacement rehabilitation," and of course, "me over-reacting or just being a wimp." I love the last one, don't you?
Within three months of his diagnosis, I was diagnosed with progressive Complex Regional Pain Syndrome, Type 2, high-risk recurrent C difficile infection colitis.
Since May 2017, I have gone from a productive 22-year career pharmacist who provided for her disabled husband to a woman who can't drive, care for her home, or leave her home. I can't walk, stand, sit, or lie down for any length of time. I rarely sleep. Today, I was told by another "pain management specialist" that the answer is to wean off of all "opiates" and I would miraculously be free of pain. All I needed was to change out my Spinal Cord Stimulator leads and I would be able to go back to work! Woohoo! Everything would be hunky-dory. (Sorry, that's sarcasm. I didn't have the temperament at the time to correct him that I take opioids, not opiates.) He actually sounded like the poster child for the DEA agents I spoke to about ten years ago when they thought they had the answer to the Nation's Opioid Addiction Problem. I simply popped their bubble and told them that they were missing the Gabapentin that everyone was using as an additive and stimulant with their opioids at the time and nobody bothered to notice. They dismissed me. Too bad I was right.
The issue is that NOT taking opioids won't make my pain go away. Changing my leads won't make my pain go away. And working as a pharmacist OR anything else will NOT make my pain go away. The issue is that I have CRPS Type 2 and my pain will never go away. When asked, he didn't know the difference between Type 1 and Type 2. He didn't know what the cutting edge treatments were for CRPS. What LDN was… He said he gave Ketamine IV in his OFFICE!

BE CAREFUL WHO YOU TRUST WITH YOUR BODY, BRAIN, AND EMOTIONS. YOU ONLY HAVE THIS ONE LIFE ON EARTH. God gave us a brain to use it. Do so. Get prepared. Listen, learn, and be armed with knowledge and faith before YOU decide what to do with your body. God will be with you the entire way. He will not leave or forsake you. He will walk through fire if need be.

PLEASE, PLEASE, KNOW YOUR BODY. KNOW YOUR DISEASE. KNOW YOUR TREATMENTS. KNOW WHAT IS ACCEPTABLE, WHAT IS NOT. Don't be fooled by fancy words or a white coat.

AGAIN, your life may depend on it. So far I have kept multiple errors from occurring in my own case merely by doing this.

YES, the best approach is the TEAM approach. Unfortunately, many physicians and specialists are too prideful or busy to consult with other doctors about their patients, relying on medical records, incomplete at that, to give them the "required" information that they base their pre-visit, and sometimes, conclusions about the visit on. They are too busy or too booked up to spend adequate time with their patients to confirm, clarify, or simply take a complete history and examination either. Therefore, they go with their "gut," a conference or statistical approach, or simply what a previous specialist's opinion. Why spend the time on a complicated case when they don't have the time for the easy ones?

That is the truth about the majority of our healthcare system today, especially in rural America like Wyoming.

YOU MUST BE THE CAPTAIN OF YOUR HEALTHCARE TEAM. YOU must make sure that all your providers are on the same page when it comes to your care. YOU must make sure that everyone has the most up to date information, test results, imaging, and medication lists. YOU must carry the information everywhere so no one needs to guess how to treat you if they need to. YES, it's sad. YES, it's bad. But your LIFE DEPENDS ON IT.

If you have a chronic health disease and are treated by more than one specialist or doctor, YOU are the one responsible for your healthcare. NOBODY will do it for you. Please don't let yourself down. I care too much about you to NOT tell you the truth.

Jump to this post

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.

REPLY

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

REPLY
@lioness

@rsnowflake Good morning I'm Lioness I use to live in the Pittsburg area before moving to Calif. I have fibromyalgia O.A. and had a fracture back that gives me pain. I know about the weather issues even when it rains here I feel the change and we are in a rainy pattern now. I am 76 now but remember by 40,s it was tough that's when fibro started my mind was all over the place with that and menopause I was a wrecking ball wonder my family didn't desert me. Its good days and bad we all have but I have developed a tool box of stuff I do. Ice ,heat Tens unit for relaxation, Tappingsolutions.om if your not familiar with tapping. Tai,Chai, I started a chair exercise program here where I live Ginger turmeric tea for imflamation and it just taste goods. I wish back in those days I would have known about some of those tools . Sometimes when Dr,s don't have the answers we have to look elsewhere . I do a lot of research on any subject ,computer is great for this . WebMD.com ,https://www. nich.nih.gov I'm here if you want to talk This is a good group of people on here that care and try to help others

Jump to this post

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.

REPLY

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.

REPLY
@mam14

Thank you. I will look into that for sure. I tried to order a CBD oil, one that is legal and supposed to be safe. I got scammed. It was infuriating with all I'm going through. Have you ever tried one of those?

Jump to this post

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.

REPLY

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

REPLY
@drorvick

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

Jump to this post

@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?

REPLY
Please sign in or register to post a reply.