Hi, everyone! It has been a few months since my last post. There has been a lot going on; there was a death in the family, a new relationship, lots of doctors appointments and lots of flank pain. In addition, there has been a lot in the news, and everything in my life’s been overwhelming and has been causing lots of anxiety. Needless to say, I am hoping to again post more regularly now that things are a tiny bit more calm, and I have a giant list of things to post and hundreds and hundreds (literally) of emails to respond to (thank you for being such dedicated and wonderful readers!). Bear with me as I get caught up!
One of the things that has taken over my life, as you know from previous posts, is this horrendous flank pain I deal with. It is unrelenting, as an EDSer and friend who has horrific flank pain commented to me recently, and can really bring a person down to the bottom. There have been days I am curled up in bed in crocodile tears, clutching at my sheets, screaming and writhing in pain. I have all sorts of pain in my body, but nothing that comes close to this. Refer to the photo below for location. I have described it as:
“…terribly hot, writhing pain that never goes away, and is only slightly muted by the combo of pain meds, anti-spasmodic meds and a heating pad. The docs have no idea what is causing it and have just labeled it “nerve pain”.”
Currently, Dr. Pain Relief, the new pain management physician I am seeing has me on a regimen of pain meds, fibromyalgia meds, muscle relaxers and Lidoderm patches. I am taking Oxycontin 15mg 2xday, Norco for breakthrough pain 10/325 up to 4xday, Savella (a newer fibromyalgia med) 50mg 2xday, Flexeril 10mg 2xday, and using Lidoderm patches daily for my back/flank pain. The new combo has me feeling a lot better with the pain in most of my body. I am not having as much pain in my hips which is fantastic, and I don’t notice most of the “normal” pains in the forefront. If something subluxes, the pain is bad, but seems more manageable. However; the pain med combo is doing nothing to touch the flank pain. Nothing at all. The Lidoderm patches placed directly over the pain make it ever so slightly less annoying. Not a lot though.
This has left us searching blindly, as with most EDS symptoms, but now we’re left without a lot of options. We’ve tried everything: TENS units (which I already own), higher doses of pain meds, injections, nerve blocks, etc. None of them help, or only help slightly for a few hours (like the nerve blocks, and I can’t be injected with those every few hours!). My doctor thinks I should try a neurostimulator, also referred to as Spinal Cord Stimulators (SCS). At this point, I feel like trying anything, but I am terrified of having something implanted in me.
How a neurostimulator works:
For my readers who are familiar with SCS:
- Can you please provide me with your opinion/story of neurostimulation?
- Have you or someone you know had the surgery? (I am hoping to find people with EDS or fibromyalgia, etc., to find how it helped/didn’t help them.)
- Did you receive relief? How much?
- What was your recovery time?
- Was the surgery worth it?
- Would you recommend SCS?
Thanks so much for all of your time! I am very scared and having a hard time making a decision. I want relief more than anything. I have also watched lots of videos on YouTube that have shown patients who have had wonderful relief and who have had terrible experiences. I am very lost. Any help you are able to provide would be greatly appreciated!
I hope you are all well and enjoying a low-pain week! My love goes out to all of you!