Sterling’s CRPS Survival Guide

      Sterling’s CRPS Survival Guide

This has been a long road for Sterling and our family, I say family too because it is hard to watch someone you love and respect go through so much pain. CRPS is a monster and what works for some, doesn’t work for others. What most people don’t understand is pain medication might make you feel loopy and take your mind of the pain for a bit, but it does not touch the PAIN! When Sterling got diagnosed in 2015 the doctors could not explain to us what he has, how to treat and how to find some relief. I went on a research frenzy (I still am!) I read everything I can get my hands on. We felt lost and I felt helpless! I started to take matters into my own hands, after going through many doctors and homeopathic doctors, time and money I wanted to write down what has helped Sterling. He is far from remission, but he is not bed ridden all of the time (like he was when he was first diagnosed.) Sterling and I are not doctors and like I said before what works for some doesn’t work for others. This is not medical advice, it is just simply what has helped Sterling.   After putting Sterling’s story out on social media I have been contacted by many friends, family & strangers who feel lost, hopeless and have no direction with being diagnosed with CRPS. With help from the team of Doctors we now have, here is some information and medications that have helped Sterling along this Journey.

 

I would always suggest watching and printing out Dr. Chopra’s video on YouTube about protocol for CRPS https://youtu.be/s3LKhOZ8mAM this is a long video but has crucial information. He explains that most pain clinics around the US can actually make pain and condition worse! We watched this together many times, asked members of our family to watch it so they could get an idea of what CRPS is, and we printed it out and took it to every doctor’s appointment we had. Unfortunately I was surprised at the arrogance of most doctors that would not even listen to what we were saying and refused to look at the research I had done. It is still worth a try, you may find a doctor willing to listen! Don’t give up!

 

*LDN (Low dose Naltrexone 4.5mg

Through Dr. Chopra we found out quickly why pain medications don’t work, it is because they actually activate the glial-cells around the nerves and with CRPS we want to relax or block them. There is a medication called Low Dose Naltrexone (LDN) 4.5 mg once a day, in the evening before bed. You will need a compound pharmacy to formulate it in the low dose. Naltrexone was originally designed as a medication to reduce heroine dependence, but used in a low dose form it is used to slightly block receptors on the glial cells to return them to normal function. Note; you cannot take pain medications with LDN because they will counter act each other. This was the hardest part for Sterling he had to wean himself off pain medication in order take the LDN and it was hard to get a doctor to prescribe it. This is another question I have everyone asking me is how I got it, truthfully I printed off information about LDN and CRPS took it to Sterling’s family doctor and begged! He let us try it and Sterling got lucky! Again I’m not a doctor and what works for some won’t for others so I suggest you do research on medications before deciding to take them.

*Amitriptyline 75 mg

With CRPS a huge problem is getting NO sleep. Sterling’s pain is so much worse at night I would assume it is with most CRPS patients. He takes Amitriptyline 75 mg at night to help him sleep. It’s originally used for an anti-depression medication, but with CRPS many of those medications are used to relax the system as well. This is an old drug but in my research others with CRPS said it had helped so we asked our doctor about this drug as well.

*Gabapentin 800 mg 3xday

Gabapentin is originally used to treat seizures, but they use it for a ton of other stuff too. Sterling has worked up to the 800 mg 3x a day and can’t miss a dose, this drug seems to help the stabbing, burning pain the most. This is a common drug and most doctors don’t have a problem prescribing it for CRPS.

 

*In my research these are what NOT to eat for inflammation in the body

Caffeine, sugar, gluten, and alcohol these foods can actually cause inflammation in the body. Sterling feels much better when off these foods. His hardest is the sugar we constantly remind him sugar=PAIN!

Vitamins play a key part in helping with pain; Sterling takes them throughout the day to keep them in his system. Vitamins take time before you see a difference. Sterling, can’t miss one dose without his pain being worse, he takes them diligently.

 

• Vitamin B Complex 2xday
• D3 2000IU 4 per day
• Alpha Lipoic Acid 600 mg day
• Vitamin C (can take up to 3,000 mg per day) Sterling takes 2,000
• Magnesium 250 mg 4 per night
• Quality brand of Omega 3’s 2-3xday
• Quality brand of Calcium 2-3 per night
• Turmeric & cayenne pepper are great anti-inflammatory agents. Eat them whenever possible also you can find them in capsules at local natural grocery stores.

 

 

Sterling goes to many homeopathic Doctors as well, I think this is key in dealing with CRPS. He’s done many cleanses to get metals and toxins out of his system. His situation is kind of unique in the fact that he has a mild allergy to metals and has a mouth full of metal posts!   We would have never known this if it weren’t for the homeopathic doctors. They help you understand your body and what it is lacking. I highly suggest in finding a homeopathic doctor in your area and get some help with that aspect of it as well.

*Exercise

This is another key part to CRPS. Many of Sterling’s doctors kept putting him on bed rest and in reality it was making his symptoms worse. He tried physical therapy and I think it helped a bit but wasn’t enough. He rides a bike at our local gym and lifts weights. When he first started this routine I watched him almost pass out from pain, but it slowly started to have the opposite effect on him (when I say he started slow I mean like going up and down maybe 2 stairs!) Now he can do an hour on bike and lift weights! From articles I have read on exercise it inhibits the hyperactivity of the glial cells, which are problematic in CRPS. Without a doubt exercise is a key part of Sterling’s regimen. I also have watched him suffer and push himself to limits he didn’t know he had inside of himself. CRPS in itself can be depressing so exercising helps that part as well.

Again I just wanted to say these medications and supplements help Sterling they may not for others, he hasn’t found remission yet, but I have had many CRPS sufferers ask me what we are doing to cope and keep Sterling moving.

Sterling did try a few nerve blocks and Lidocaine infusions in which they did not work for him. We have not yet tried Ketamine infusions. They are expensive and not guaranteed to work, but we have not ruled them out! (Insurance covers nothing with CRPS!) We have tried to be prayerful and somewhat patient in what we are willing to try. Here in Utah we do not have many options, most pain clinics and doctors are doing treatments in which Dr. Chopra says can only make things worse. It took us a long time to get into the U of U pain clinc, so far we have had good experiences with their team. At this current time we have been speaking with a Dr. Katina in Arkansas that has had some success in treating CRPS without heavy drug infusions. It’s a 10 week treatment program.  We will keep you posted if we find something that works for us that might help someone else with this monster of a disease called CRPS. The most important thing to remember is we are not alone in this. CRPS needs a voice and it needs to be heard.  More research needs to be done.  This is why it is important for us to talk about it and help one another.