When Googling PGAD/RGS, a lot of negative comes up. When I told my mom what I thought I had (after months of feeling depressed) she Googled for hours. The outcome scared her. There where so many articles about suicide and deep depression following this condition. This is a big part of why I wanted to start this blog.
The pain is unbearable and talking about it can be even worse. If you live in a rural city, you will find it extremely difficult to find a good doctor that knows anything about these conditions and the symptoms. The road to treatments is a difficult one. It is so hard to find answers when not enough people know about this.
If you research chronic pain, you will find a lot of articles about "Pain Management." You'll read about breathe-work, mindfulness, and other mental techniques. These are all good and can help you get better. But I find there is a bit more to it then meditation.
So how do I make it work? How do I stay happy?
I remind myself daily that it takes practice to live with the pain. I also remind myself of the things I want out of life. What do I want to do, what do I want to achieve? Because those are the things that make life worth living. I want to travel the world, I want my business to be successful, I want to have a family. These are the things that make living through the pain worth it.
The pain will probably come back. It is important to accept this. I know it is a hard one to swallow. There is no magical treatment for PGAD/RGS and especially chronic pain. Instead, there are fixes. There are things you can do to get rid of the pain or break it down. There are things you can do to take the level 10 pain down to a level 2. Sometimes there are things you can do to take it away completely or take it away for years and years. So don't lose hope. But, for myself, I have realized that life presents stresses and I get flare ups when I am stressed. But that is okay. Because when I get flare ups, I have plans in place to get rid of them. I take steps to deal with the pain and then I move on. Because life is too good to miss out on.
Don't get lost in the deep, dark web. I know when you are first trying to figure out what you have, this will be a bit inevitable. But don't make this a daily routine. If you google something like "car accident" all the images that will first come up are the worst of the worst. Think of this as the same thing. If you Google PGAD you are going to come across horror stories. You are going to see how some medication made things worse for people. You are going to read about women who had hysterectomies to try and solve their symptoms. Again, the worst of the worst. This is not going to help you. Sometimes people read these things and then get paranoid about trying certain meds or treatments. And I understand why, but the truth is, if you find a good doctor, they won't let this happen to you. Find someone who actually knows and studied these conditions. And if you do, then trust them. There were treatments I tried that did not work and were painful at the time, but in the end I am glad I tried it, because it ruled something out for me. It made my lists of treatments smaller.
BE PROACTIVE. I cannot stress this enough. Take the steps. As soon as you feel a flare up, go to your normal routine. Ice it or do a Sitz bath or use lidocaine. You can also reach out to your doctor if you see a specialist. Happiness is a choice. You can sulk in the pain or you can get up. If all you do is sit and sulk, the pain will not go away, IT WILL GET WORSE. And I know it isn't easy. There are times where my proactive steps are not getting rid of a flare up. And if that is the case, I schedule a Tele-visit with my doctor and we go through what can be done next. There is always some new thing that you can try.
Be happy about the small improvements. If today you feel 10% better than yesterday, then guess what - you are feeling better. I know it isn't 100%, but it is something. And I am telling you that is something to celebrate. That means something is working.
I am going to repeat again, Happiness is a choice. You get to choose how to tackle what life has given you. I am not saying you are not allowed to be sad. There are days where my flare ups or something involving my condition is really bad. And on those days, I allow myself to be sad. I stay home, watch TV, and eat whatever I want. But it's the pattern I don't want you to allow. Allow that for a day or two, and after that, work the issue out. Because if not, you are going to let life pass you by.
I've been dealing with these conditions for about 9 years. I have had really bad days and I have had really amazing days. I travel all the time (pre-Covid19, of course). I am married. I have my own business. I have and do these things because I am proactive. The hardest part for me was the first few months. The days where I didn't know what was happening. When I saw doctor after doctor poking and probing with no results. The day I met Dr. Echenberg I felt my life had changed. I felt like I could breathe for the first time in months.
Because putting a name to my symptoms meant I could move on to the solutions. It meant I didn't need to go to doctors crying for help. PGAD/RGS is not known to many, but there is information out there. There are answers. You need to choose happiness. You need to fight for the things you want out of life. I know it can get really hard. I know there are going to be days you want to give up. But life is too good for that. You are stronger than that. "Being able to walk pain-free is a blessing, being able to walk without showing the pain is a skill." -- Kylie McPherson