Living with Complex Regional Pain Syndrome.

Hello friends,I just want to talk to you a bit about what life is like living with this horrific disease.
Ariel has many medical issues as I'm sure you are all well aware.Seizures being a big part of her life since she was 12 yrs old.Her Neurologist said he believes she has Lennox Gastaut Syndrome.Almost daily she has one seizure or another it just depends on the severity.Some days it can be blanking out or jerks other times it's full blown Generalized Tonic Clonics or ones so severe she has to use her wheelchair.Then she has Gastroparesis so sometimes things are good and then other times her stomach is wreaking havoc.

On Dec 11th Ariel had a Grand Mal (Generalized Tonic Clonic ) in the bathroom and banged her arm on the tub causing her to get post traumatic fat necrosis.Her arm was so painful and just kept swelling and turning black and blue.Thankfully we found a good doctor to diagnose this after many visits to urgent care and just being blown off.That turned into CRPS.
Here is an explanation of what this is.
https://www.webmd.com/pain-management/guide/complex-regional-pain-syndrome#1 
It is one of the most painful syndromes there are.On the McGill pain scale it tops amputation,childbirth and cancer.
http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html
Unfortunately not only do a lot of people in the medical field not know about it,but also there isn't a lot you can do for it.Basic treatment is nerve blocks,physical therapy,spinal cord stimulators and Ketamine infusions.Some people have used essential oils and diet and that has helped them and we are not above looking into whatever we can to help Ariel.In fact the less invasive the better.

The more rare thing is she is one of the people who get burning lesions from her CRPS.She has a team of doctors treating her.This includes Sports Medicine,Physical and Rehabilitational Specialist and a Pain Management doctor.None of them have ever seen anything like it.I showed them articles and documentaries and mentioned people on my group that get them.The documentary below is of Kayla.She and her mom have helped me tremendously.The people on my group that get lesions all look very similar to Ariel's.At first one doctor said they were shingles after countless doctors and Dermatology it was determined these are indeed from her CRPS.Everywhere we went they took countless pictures.They tried putting her on Gabapentin for nerve pain and that was a bust too many side effects.She was in so much pain and every new lesion feels like she's being burned.We have become quite efficient in knowing what to use as far as creams and ointments how to wrap and what makes her feel a bit better.

And unfortunately CRPS spreads easily.She now has lesions on both arms and one leg.

 

Finally after a whole lot of nonsense they finally were able to get her nerve blocks scheduled.Unfortunately these are only a temporary fix.The goal is to calm the flare and pain down and to scramble the signals going to her brain.Ariel is pretty much put out for these due to her seizures.They didn't listen on the first one and she had several seizures while they were trying to do the procedure.Here is the description of them:
https://paindoctor.com/treatments/stellate-ganglion-block/

After the first one she felt really good.Not pain free,but tolerable.We were able to get out and do some things.The next one was 10 days away and then due to a scheduling error she had to wait 3 weeks for the next and got a whole lot more lesions and was just feeling miserable.

Most days were spent in bed feeling awful.A fellow CRPS warrior made this amazing cup for Ariel.Thank you Raechel.

As of now she's had a total of 6 nerve blocks.She will be getting her 7th next week.The time they are lasting is seeming less and less and we are really looking into essential oils and dietary changes hoping that will help.As of right now we are either at the doctor all the time or on the phone with them.It's so very frustrating.We did take time this past week after her 6th nerve block and went to the park and to downtown Poulsbo just to get out and have some fun.

Poor girl needed something to lift her spirits and those were pretty good days.Last night she was hurting a lot again.Please continue to pray for Ariel that we find something to help her.