TESSA!! There you are! So great to hear from you!!

Oh yeah, I did try Baclofen and it was a terrible experience for me and I couldn’t wait for it to be out of my system. And I am the one who ask to try it. It was my idea with the doc, and I so regretted it. I will try to explain what it felt like. So I take gabapentin (which I will be talking to the doc in jan about changing) which helps or makes life worth waking up for by helping to control the electric shock and tremors.

My tremors, much like the shocks were, without this drug, VERY severe. The tremors would also turn into full on violent jerks. My tremors often give off warning feelings before they become visible. I can feel a vibration of sorts, or tremble inside and without some treatment it will escalate from there. I can also have what feels like restless leg.

Anyway, so when I took baclofen I felt the vibrations, trembling and SEVERE restless leg (but all over my body) feeling. It was maddening and I couldn’t wait for it to be over. I’m so dumb that I tried it again, thinking well what if it was just a bad night. NO! it was indeed the drug. That sucks because I had heard so many that felt like it really helped them and I was hoping it would help me too.

Soaks/Massage: yep, I do both.. often. My daughter is in massage therapy school. She’s trying to learn how to fix me, bless her heart. She’s only done one real, full body massage on me. She’s concerned to touch me until she has all the knowledge. She doesn’t want to hurt me. I tell her, heck, you’re not gonna hurt me, you would massage lightly on me before you were in school. I respect her and I am waiting. I think around May-ish I will be a regular client lol. Until then, yes I rub the areas that I can reach. I worked hard for the first few years of CRPS and continue to try and desensitize my foot/toes as much as possible. This usually happens in a bath. Funny how the more stressed out my leg/foot, the more sensitive my toes will be. They can regress quickly and then dissipate if I quit doing whatever is aggravating them, like walking too much, etc.

And another quick note on massage. I’ve paid for such bliss and have had great experiences with it. I have also had terrible therapists, who like some doctors, just didn’t listen to me before or during a treatment. I will always tell them; don’t lightly touch my foot, ESPECIALLY my toes on my right limb. As relaxation is what I’m after, not pain, and that would send me through the roof. If you do touch that area, be profound, definite in your touch. Most will just avoid it. Cool that.

I do move and get around more often and more vigorously than I probably should. I am the queen of over doing it. Then I pay the toll for a day, two or three… Balance… I must find balance in my life with this stuff.

So great to hear from you! Sorry to just be rambling on and on. Hope you’re having a good day! And HAPPY NEW YEAR!