I read a blog post the other day, that I had written and something jumped out at me, my punctuation, which is normally questionable was atrocious. But the post was dictated. I don’t always remember to insert things like commas when I dictate.
The second is all the crying faces on Facebook in response to posts about my CRPS. It does suck and it has taken over a large part of my life. But I rarely blog about it just to whine about it. I blog about it for the same reason I blog about serial killers, politics, and conspiracy theories.
I have a forum that’s open to whatever my mind thinks of…. And with nearly 5,000 followers between my blog, Facebook, and Twitter, I can pass along information via my blog to others. And when one of those 5,000 people who reads my blog and meets someone new and that person says “I have CRPS” those readers will not have to ask “what the hell is that?”
And ultimately, that is my goal. Or worse, if their daughter or granddaughter or neice breaks an arm and a year later, it still feels broken, that reader can say “Look, is this a possibility? I follow a writer who has it and she went 23 years without an accurate diagnosis, because she had to wait for it to take hold in another area and the pain to be unbearable.” There’s no test for CRPS. Some people have visual changes to the skin around the area. My hip, buttock and thigh on the right side are massively swollen all the time. That hip gets a mottled red and white and it feels slightly colder to the touch than the rest of my body, even when I’ve been up and moving around. Some people have the opposite, it feels warm to the touch. Some people lose their hair in that area.
When I mention it probably started in my right arm when I was 14, doctors touch that arm and inspect the hairs on it. The hairs are normal as can be though. It doesn’t change the fact that it always hurts a little and it always feels like it has a small electrical current passing through it. I have a neuropathic twitch in my pinky on my right hand. I also have it in my thumb. Neuropathic twitches are common with CRPS. Sometimes I know it’s coming, sometimes, I don’t. And there’s one in my thigh and one that will make me kick out my right foot.
Usually, once a day, I can sit and watch a nerve near my groin twitch. It makes my entire thigh “jump”. Why the foot kick? Because we are fairly certain the nerves in my groin aren’t the only ones afflicted in my hip. It would appear my sciatic is as well on that side. When that nerve twitches (the sciatic is the largest and longest in the legs), my foot uncontrollably kicks out. And my toes point. It doesn’t hurt, it’s just annoying as hell. The twitch usually lasts less than 5 minutes. Sometimes it will last 10-15, but that’s incredibly rare for me.
For years, I didn’t know the symptoms of RSD/CRPS. So I didn’t know the neuropathic twitches in my fingers and at my wrist could be signs. I also didn’t know that radiowave nerve ablation is one of the worst things that can be done for it. So in September 2017, when we didn’t have a diagnosis, but knew the pain was nerve related, we did nerve ablation in my hip. My hip hurt before it was done, no doubt about it. But it wasn’t as bad as it was now. I could take Tylenol 75% of the time and that would help the pain.
Only after nerve ablation, did the Tylenol stop helping. That was when I had to have something stronger all the time. I have talked to a dozen other people with CRPS who, like me, didn’t know they had CRPS and went ahead and tried nerve ablation only for the pain that was bad to get instantly and insanely worse. By sharing my story and struggle, I hope to help others.
I hope that if someone new comes into your life and says “I have CRPS/RSD” my readers will know exactly what it is, keeping that person from having to explain their misery. My other hope is to keep someone from going diagnosed for a long time, like I did. And maybe stop them from doing something that is irrevocably worse for the condition, like I did.
Here’s the thing, it normally affects women, but about 20% of my support group members are male. Also, I have mothers in the groups who are there because their 7 year old daughter has it, or like one, her 6 year old son has it. Both of them got the disease after breaking a bone. That’s the most common initiator of the disease. But it isn’t the only one. I have talked to people who got it after spraining a wrist or ankle. I’ve talked to people who got it after tearing a nerve in a car accident. The cause of this neurological disorder is unknown, why does one person get it, but not another? Who is at risk? From what I can tell, anyone… It doesn’t seem to have an age preference, or a ethnic preference. A 40 year old German woman is just as likely to get it as a 10 year old African American girl.
Some research suggests there is a genetic component, but it is probably a multi-gene component. Some one may be required to have multiple gene mutations at different points, which would explain why I have it, but no one else in my family does.
And it usually starts in a limb. That’s a big thing. It didn’t start in my hip. It spread to my hip. Why? Possibly one of two reasons; I have had very, very mild arthritis in that hip since I was in my early teens. I was born with both of them out of socket and my right leg is approximately 1/8th inch longer than my left. It could have been triggered to spread to my hip from arthritis that is so mild not every radiologist even marks it on the list when I have an X-Ray of that hip done. I also have a cartilage tear in that hip. Nearly all cartilage tears heal on their own. Most people don’t even know they have one. I didn’t. But it showed up on an arthogram. A procedure that left me in brutal pain for 2 days afterwards. My hip did not appreciate having dye injected into it.
And sometimes, it just spreads on it’s own and no cause for the spread can be found. Since it’s on my right side and my right side seems more prone to CRPS (it started in my right hand and forearm when I was 14), neither of those things could be responsible for it moving to my hip. It may just be one of those things.
It’s working, my goal of educating others about this. Since I started blogging about my battle with CRPS in the fall of 2017, two of my readers have been diagnosed. One had been misdiagnosed. She broke her foot about ten years ago. She messaged me one day to say that her foot never stops hurting. Never. And one foot is a shoe size bigger than the other. Standing on it, is awful she told me. Her doctor told her it was nerve damage from the break. They weren’t doing anything for it though except Gabapentin. She took what she had learned from my blog to her doctor. And after a couple of visits where her pain was evaluated, they decided she had CRPS. Another reader, took what she had learned from my blog to her doctor for her mother. Her mother had fallen on some ice several years ago and was experiencing terrible pain in her shoulder after breaking her upper arm in the fall (from what I could gather, she broke the head of the bone off in the socket and had to have surgery to fix it). Once they brought it up to the doctors and had a thorough evaluation, it was decided both of these women were indeed suffering from CRPS. Interestingly, one of them messaged me after my gallbladder surgery and my discussion about how much better I’d felt after getting ketamine for the surgery. She took that information to the doctor and got her mother approved for oral ketamine tablets. The doctor told her it probably wouldn’t work, but they’d try it for 2 weeks and then evaluate the side effects v. pain relief. She says her mom is doing fabulous on it, no side effects and the pain has decreased enough that she is able to garden again, one of her great pleasures.
That’s why I blog about it. Admittedly, most blog posts are triggered by an event or comment or question or my need to vent my frustrations when I can’t do something because of it. But it help others, not just me. And that helps me too. Yes, I have this awful thing, but if my blogging about said horrible thing can help someone else? Then maybe it’s worth it?