Lately, my heat flares and pain have mostly been on my right leg and foot. Not much on my left side. Does this happen to anyone? It's been about 2 or 3 weeks now. I didn't pay much attention in the beginning so not sure about the time frame.
I've been taking misoprostol, and haven't , felt much difference. However, a few days ago, I forgot to take my morning dose, and was in sooo much pain! That's when I realized I hadn't taken a dose. But the last couple of days my pain has increased. And, I already have EM pretty severely. So, I haven't been doing good. And, have been crying again. Saw my Pain Dr this morning. We decided that I would take it 3 times a day to see if in fact it's helping me. I also just got my glp1 today, but I'm gonna hold off for a couple of days to see if the misoprostol is in fact helping. My next med will be mexiletine. I would love to try the hot baths, but I can barely shower. So, I don't think that's an option. Are there any other meds that have helped anyone?
So, I haven't had much luck with anything. But I did ask my pain Dr if I could try misoprostol. I started on 7/21, so it's been a couple weeks. I think I'm feeling something. The last few days have been good. Not much flaring. Usually I'm in a flare all day all night. Last night, I went to bed without being in a flare. I was surprised! Even my son was surprised!Today has been ok, however, my right foot started flaring up a few hours ago and hasn't subsided with fans and ice. But overall, better. I see my pain Dr this month for my 1 month f/u. I'm gonna see if we can increase the dosage. And, haven't been crying, which is huge for me. I just hope this isn't a fluke. And that I'm not jinxing myself by talking about this. Fingers crossed!
I saw pain management to increase my belbuca. I cried through the whole appointment. He is increasing the dose for 2 weeks, then moving me up to the next dose since I'm in a lot of pain. He also prescribed journavx for now, to give some relief. He suggested fentanyl patch. But I will see how this works 1st. At this point, I don't think anything will work.
Still working on the spinal cord stimulator. Just started up with new programs. There are a lot of programs and levels. The current ones have vibration modes. When I met with the rep yesterday, the minute he turned it on, it felt great. Had to turn that program off to drive home. Turned it back on and after 3 or so hours, I stated getting inflamed again. So, I had to go back to a non vibration mode. Just got off work ( I work from home. I went back to vibration mode and lowered it way down. So far, not flaring up. But keep in mind my EM is pretty bad, so I am red and inflamed constant. It's just not "flaring" bad, if that makes sense. I also started on Belbuca. Reading online, opioid don't work for EM, however, it does say that Belbuca can help reduce pain. Only on the low dose, so not feeling anything yet. Getting it increased this week. This is for acute chronic pain. Just Google it, and you can read up on it. I will be back for updates. Sorry it's been awhile, but as you know, it takes time for Dr appointments and seeing what works and what doesn't.