I met with the NP at my new pain doctor's office this week. I loved her. She was amazing. I'm always nervous meeting with new doctors. Ever since I met the one whose first words to me were "I don't believe in CRPS. I think it's just an excuse lazy people use to not have to do anything," I have been nervous about a repeat experience. Years of dealing with this condition has taught me it most certainly is real.
The new NP told me they treat a lot of patients with CRPS. She asked me to take off my shoes and socks so she could examine my legs and immediately after doing so she said "Well, I can guess which one is the problem." She *carefully* examined me, asked a bunch of questions, and reviewed the document I brought along explaining previous treatments. She then said "I have a bunch of ideas just off the top of my head."
She suggested a few things: 1) a high frequency SCS. She says this has been found to be more effective in treating CRPS pain and does so without the paresthesia. 2) an increase in some of my medications, but she says medications can only go so far. 3) A Buprenorphine patch, which I admit I was not immediately in favor of. She said there are also other options.
Next week I will go back and have my stimulator reprogrammed to a higher frequency. She said the results of this could help indicate whether or not a high frequency SCS might be better for me. She also increased my medications and suggested melatonin to help me sleep. I took the melatonin last night, and so far no dice. I really think my lack of sleep is linked more to pain than much else. I never had insomnia until I got CRPS.
Last week I was worried I'd never find a way to decrease my pain. Today I'm feeling much more hopeful. We haven't run out of options. That's all that matters. For now I'm still in a lot of pain. we've had some crazy weather and temperature swings this week. My husband is making me sit on the couch and not do anything. I found a good one :)
Saturday, February 20, 2016
Tuesday, February 9, 2016
Mind and body
It's interesting how your physical well-being can be so affected by your mental well-being. From my previous posts you likely know I've been in more pain since last winter than I had been for years since getting my SCS. In October it got so much worse than I had ever imagined it could be. That's when I lost someone I was very close to. My big brother died. This is when I truly learned how much my mental health affects my physical health. I haven't been able to walk since.
That was the worst phone call I've ever received. My nightmare had come true. My husband and I raced over to be with my family and in my haste to be near them I managed to twist my ankle slightly. And so the nightmare got even worse. I've lost my brother and I'm in unimaginable pain. Since that day my pain levels have been so high I've barely been able to sleep. I've been doing my best to keep my head up. He wouldn't have wanted me to be down forever. In fact, as I sit here crying for him I think of how mad he'd be at me for crying. He'd just want to put a smile on my face, give me a gentle hug, rub the side of my face, and tell me everything would be okay. I can almost feel him doing it now. But how will anything ever be okay again? I tried getting back into my routine, but even now, months later, the pain is so incredible I can barely function.
In the meantime, my pain doctor closed down. No notification, no help finding a new doctor, nothing. After repeated attempts I went to my PCP to see if he'd increase the dosage of one of my meds until I could get a hole of my doctor. That's when I found out my doctor had just up and closed down. Thankfully my PCP is very understanding and helped me find a new pain doctor ASAP. I see him at the end of next week. It was the earliest I could get in. In the meantime I'm putting one foot ahead of the other, so to speak, and just trying to keep going.
I have found a song that I listen to every morning to try and help keep me positive. It's Fun. Carry On. There's a part of this song "My head is on fire, but my legs are fine. After all they are mine..." I'm trying to keep that in mind. My leg may be a huge issue for me right now, and I may feel like it is really holding me back, but after all, it is mine. Therefore it must be fine. My head, on the other hand, most certainly is on fire. I just have to keep going.
Due to all of this, I have swam exactly twice since he died. I just can't bring myself to do it, and the normal pool is not comfortable because of how cold it is. Today my mom and I went to a new gym and tried out their pool. It is smaller, but it was warm. We liked it. I'm checking out one more pool tomorrow and we will decide which we like better. Then hopefully I'll be able to get back into swimming, and that will help me cope. Swimming has always helped me deal with problems. Maybe once my head is straight again the pain will go down? Maybe? I'm still holding out hope the new doctor will have ideas for me as well.
For the first time in a long time, I have little positivity to add to my post. For that I apologize.
That was the worst phone call I've ever received. My nightmare had come true. My husband and I raced over to be with my family and in my haste to be near them I managed to twist my ankle slightly. And so the nightmare got even worse. I've lost my brother and I'm in unimaginable pain. Since that day my pain levels have been so high I've barely been able to sleep. I've been doing my best to keep my head up. He wouldn't have wanted me to be down forever. In fact, as I sit here crying for him I think of how mad he'd be at me for crying. He'd just want to put a smile on my face, give me a gentle hug, rub the side of my face, and tell me everything would be okay. I can almost feel him doing it now. But how will anything ever be okay again? I tried getting back into my routine, but even now, months later, the pain is so incredible I can barely function.
In the meantime, my pain doctor closed down. No notification, no help finding a new doctor, nothing. After repeated attempts I went to my PCP to see if he'd increase the dosage of one of my meds until I could get a hole of my doctor. That's when I found out my doctor had just up and closed down. Thankfully my PCP is very understanding and helped me find a new pain doctor ASAP. I see him at the end of next week. It was the earliest I could get in. In the meantime I'm putting one foot ahead of the other, so to speak, and just trying to keep going.
I have found a song that I listen to every morning to try and help keep me positive. It's Fun. Carry On. There's a part of this song "My head is on fire, but my legs are fine. After all they are mine..." I'm trying to keep that in mind. My leg may be a huge issue for me right now, and I may feel like it is really holding me back, but after all, it is mine. Therefore it must be fine. My head, on the other hand, most certainly is on fire. I just have to keep going.
Due to all of this, I have swam exactly twice since he died. I just can't bring myself to do it, and the normal pool is not comfortable because of how cold it is. Today my mom and I went to a new gym and tried out their pool. It is smaller, but it was warm. We liked it. I'm checking out one more pool tomorrow and we will decide which we like better. Then hopefully I'll be able to get back into swimming, and that will help me cope. Swimming has always helped me deal with problems. Maybe once my head is straight again the pain will go down? Maybe? I'm still holding out hope the new doctor will have ideas for me as well.
For the first time in a long time, I have little positivity to add to my post. For that I apologize.
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