Hello @alyric. I see that you have learned to navigate Connect quite well already and have found some discussions centered around some of the things you are dealing with like peripheral neuropathy. Here are a few more discussions you may find useful as well:

- Fibromyalgia Pain, http://mayocl.in/2hgUGcv
- Osteoarthritis - what helps? http://mayocl.in/2nVJD7P
- Osteoarthritis at 32 female, http://mayocl.in/2mPCBoe

Here is also a discussion with some members who have gone through the pain rehabilitation clinic program at Mayo Clinic, http://mayocl.in/2hj0DBM.

@alyric, you certainly have dealt with quite a bit and I know the members will appreciate your openness and help in any way they can. If you don't mind, may I ask how similar is central pain syndrome (CPS) to complex regional pain syndrome (CRPS)?

@alyric, is there a medicaid program where you live? Perhaps that could help with the medical expense. You mention insurance for RX. Do you have health insurance? Will that help with the Pain Rehab costs? I understand your feeling of helplessness and frustration. Been there,done that.While I'm not dealing with the same array of chronic pain causes as you, I know my pain will always be there till I'm gone. Aside from this online group, do you have people in your life that are supportive? That is most helpful. Hang tough and try to trust in a higher power.

@JustinMcClanahan I have found several discussions to participate in. I find everyone's experiences interesting and informative. It's nice to know I'm not as "abnormal" as I've decided I am. HaHaHa!

I wanted to make sure I was using the correct terminology so I researched quickly some of the most reliable sites. This is one of the definitions. "CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain" per http://rsds.org/telltale-signs-and-symptoms-of-crpsrsd/ . I have found post-surgical pain, fibromyalgia and even everyday bumps are so much more painful than before I had significant pain.

CRPS at CPS is the same disorder. Doctors without much experience dealing with patients having pain issues accuse the patient of "making it all up, "it's all in your head" and "you are just saying this to get medication"!

Some of the latest research shows Low Dose Naltrexone is effective in helping with CRPS/CPS as well as Fibromyalgia. (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf) Naltrexon has, until recently, only used in alcohol withdrawl (in a much higher dose, of course). I have found by using the Naltrexone 4.5 mg and Cymbalta, 90 mg in divided doses, has helped with this pain, but not alleviated it.

I found this information rather interesting.

"Baseline erythrocyte sedimentation rate predicted over 80% of the variance in drug response. Individuals with higher sedimentation rates (indicating general inflammatory processes) had the greatest reduction of symptoms in response to
low-dose naltrexone." (http://rsds.org/wp-content/uploads/2015/02/Younger_LowDoseNaltrexone.pdf)

So if a prescriber were to do this simple test, it could predict if it would be effective in helping treat chronic pain. One of the other things I found, Naltrexone is a compound medication and not every pharmacy does the compounding, but the Mayo Clinic Pharmacy does. But when initially filling, it will take several days to fill the first order, after that just a day heads up & they will have it done.

My PCP has now (not exactly now-January 4, 2017) prescribed a topical cream consisting of Lidocaine and diclafenac. Since insurances will only allow lidocaine 5% or higher for shingles, they will not pay for it (Mayo pharmacies charge $189/30 oz (600 ml)), but will pay for the diclufenac, I have to buy the OTC 4% lidocaine cream available, the pharmacy will send the powder diclafenac and I have to mix it together. I hope to see results of some sort from this. Since it is a topical cream and not a patch, it will need to be applied TID (3 times daily). I will check back after a trial of this. My PCP is out of other ideas if this does not work. He has said if I wanted medical marijuana, he would help me with the process. I hope not to go that road since it is expensive, even with grants available in MN, and not knowing right now how it would affect my nursing license.

@goodtime 376. My insurance in Medicare and MN Medicaid, and the only expense Medicaid will help cover is lodging up to $50/night and a $$ amount for meals---this is great, but I have to pay out of pocket for it, then submit receipts for it, then wait up to a month for reimbursement. The other reason it would be difficult to attend the Pain Rehab Clinic is my son. He is 21 and just diagnosed with Autism. Yes, 18-20 years to late. He is what is formerly known as having Aspberger's Syndrome. He has the body of a 21 year old, the intellectual age of someone who has a Ph.D., the social age of a 10-15 year old and emotional age of someone ages 2-10. When I was in the hospital from April 29-June 7, 2016 he didn't do well. He took care of our 2 small dogs, managed to eat but that was it. He didn't do laundry, take out trash or recycling, vacuum, or do dishes unless he needed something. He used all the disposable plates/plastic ware/napkins. He did not tell anyone where I was, what had happened and did not communicate with others except when he went to the library. So, I am concerned, even though I would be gone from early Monday morning to early Friday evening and in contact by phone. I'm trying to get a support system set up for him to use in the case I wouldn't be around due to hospitalization or some other unexpected emergency. His father hasn't been in his life since he was arrested in 2003, and wasn't a present parent before that. My daughter is 23 and not involved in our lives so she isn't someone to count on.

I do not have much of a support system. People tend to shy away from people with medical issues. I have a therapist I meet weekly with, and I just started a job at the local Family Dollar store. I do have a church I attend infrequently since finances are so tight I am unable to afford the gas to travel 70 miles round trip, and no one to carpool with. It is only my faith that has sustained and brought me through this turbulence. Thanks for asking and sharing a bit about your pain! Blessings!

@alyric

So sorry life is so complicated for you right now. Lidocaine 5% cream has been a help to me. I put it on at bedtime, and it numbs my feet enough to get to sleep. I have peripheral neuropathy. Medicare has paid for it for my application.

We drive 30 minutes each way to church, so I know the problems with that. It's expensive, and hard to make close relationships. I'm a retired minister, and I've always hoped that congregants would care for each other, and they often do amazing things for one another, whether they know them or not. Your pastor could probably introduce you to those who have a gift of benevolence, and maybe they'll surprise you.

Pizza just arrived. Gotta go.

Jim

Yummy, Jim! Pizza sounds SOOO good!

How did you get Medicare to pay for the Lidocaine? My PCP has submitted a couple of different diagnosis & habe been rejected. Plurodynia & Post thoracic surgical traumatic neuroparhy.

@alyric Thank you for providing the information on CRPS and related sites. My original chronic pain was phantom limb pain, which is still one of my major problems. I had never heard of CRPS and thanks to your post i was able to look it up. I still am not sure if they consider phantom limb pain part of CRPS, but it has led to other sites about phantom pain. I appreciate your email and including the sites to contact. Good Luck, 19lin

The neurologist prescribed it for idiopathic peripheral neuropathy chronic pain. It's expensive. Have you tried Capzaisin? I've heard that it helps some people, though it didn't touch my pain.

Jim

@alyric

The pizza was excellent - first time to try a small place.

Jim

Hi a lyric. Yes, phantom limb pain is also considered to be CRPS. I was in a pain therapy program with someone who had phantom limb pain.