CRPS, testimony and blessing

Doctor Route for Me

As I have said before CRPS does not have a cure. Some people can find remission, which will come and go. There is also no one size treatment. It’s all trial and error. I have also found where some things work for a period of time then one day it no longer will help. Here are some things from the “pharmaceutical” route that I have tried or am still doing and some of the effects that can come from them.

I was blessed and found the BEST pain doctor so soon, 4 months from when the symptoms began. He knows his complex regional pain syndrome stuff for sure. But he also pushes being your own advocate with him. Research and try different things. I’m very thankful for this but it is also very exhausting. But having a doctor so well educated in this disease is a MUST.

If the pain and symptoms from the disease was not enough, nerve medications have a lot of side effects as well. Brain fog, memory loss, weight gain to name a few. These are things that you have to outweigh with the pain. I was on several depression and anxiety meds as well but since getting my SCS a year ago I am down to only 2 of them!

The first one I was on was gabapentin and that was a no go. The side effects became too great in a short time. Lyrics was the next one. That one is tolerable so have been sticking to it for over 3 years. I also take Cymbalta and that helps a lot. There were a few others that I also was on or tried, for depression and anxiety. Those too had a lot of side effects, some that I could not tolerate. He even had me try one that would help open the vessels up more, it too was a no go.

The one caused me to gain so much weight in a year time, that was battle in itself as I struggle with my weight. I think it was God helping me completely showing me I should not be so consumed with being a certain size. My dosage has since reduced a little and I have lost some of it. Honestly I’m pretty happy with where I am finally!

It also causes withdrawals. Been said that it is like heroin in how much your body gets addictive. I take them 3 times a day and if I miss one, a few hours later I begin the withdrawal. Nauseous. Shaky. Sweaty. Must.Have.It!! It’s horrible. Through this though I can now relate to people who are dealing with withdrawals. I have felt it, I know the extreme of it. I went a week once, I honestly thought I was going to die.

I have been on many different opioids as well. Pills and patches. The narcotics do absolutely nothing. the patch helped for a month then it started to burn my skin and didn’t help the pain. I find muscle relaxers do a better job but I am not on any.

I have had quite a few sympathetic nerve blocks in the beginning. These are not same as cortisone shots, another saying that doesn’t go well over a CRPS patient. These two are not the same. This is when I experienced my first full pain relief. The warmth came back immediately, it was the strangest feeling. I literally could feel the blood vessels start to pump again in my foot. Again these helped for a time being.

Try having this severe of pain but knowing going to the ER would be more work than good so you suffer through. This becomes a part of life. Most doctors don’t know anything about this. I remember back in the beginning being so bad I had to go and the ER doctor looking at me, serious I might add, well why can’t you take Advil. You don’t say those words to someone in chronic pain! So maybe 6 months into this journey I am bawling my eyes out in pain, trying to explain to this “dr” what it is and how to treat it. He does finally listen but it’s an excruciating visit that I avoid at all costs. And you will find this is a too commonly of a story between CRPS patients.

The spinal cord stimulator has been a life saver. I have talked about this before so I won’t go in depth again, but just wanted to make sure I added it to this list of things from the doctor. It’s been a little over a year since I had the permanent one placed. I still receive 80-90% relief. It’s definitely a chore to keep it going though. Daily charging is harder than one would think. And sometimes the mind set struggles with it. Still it is totally worth it! I’m thankful my body has accepted this device.

What comes along with all this too is routine blood work to make sure the organs keep functioning properly. I have to go every 6 months, and this is through my family doctor. The hurdle that can happen with the blood work is the needle can cause CRPS to flare up. Which has happened a few times, it will flare in my arm from my elbow down the side of my hand and fingers. The only positive with that if it happens is I always come out of it pretty quickly. Maybe a week or two and then my arm is fine. Again no rhyme or reason when it will do it.

As you can see everything is trial. Never know what your body will do with them. You have to become ok with this process and not get too disappointed if something doesn’t work. Every person story of this is different too so always give something a try. Just because it didn’t work for me doesn’t mean it will be your staple in treatment. Next post, I will share my homeopathic and natural add ons that I have helped tremendously too. All done with the support of my pain doctor. 🧡