My Health and My New RSD Treatments
Wow, I have no concept of time, I can not remember the last time I just wrote an update about my health and RSD treatments.
Last year I weaned myself off of Gabapentin, I was up to 5400mg a day and there weren’t any more good changes, only bad. It worked for awhile to turn down the volume from my nerves to my brain, but we got to a point where it was no longer helping and I felt it was doing more damage than good. My memory was gone.
Weaning off of Gabapentin is not an easy task, especially if you do it on your own like I did. The withdrawals were horrible. It was really difficult. I did it very slowly, hoping for the least amount of withdrawal symptoms, but man it was rough.
I went without treatment for months. The pain was out of control and over the top. I ended up in the ER a few times. My heart started beating really fast anytime I tried to sleep or rest. Dizzy spells and tingly numbness were constant. I finally bit the bullet and made an appointment with my neurologist. It’s hard for me to make choices to help myself sometimes. I am one of those people that believe I can handle it, I’ll get through it. But there comes a point where you just can’t deny that you need help.
My neurologist said he was pretty sure that the racing heart issues and the dizzy spells were because I was living with so much pain without anything to help. You see, living with pain does a lot of damage to your entire body and emotional state.
Lyrica for RSD
So, he prescribed Lyrica. WOW, the price of Lyrica is astronomical. I don’t understand how they can charge so much and make it so difficult for people to get help. He started me at a low dose and we recently doubled it. The volume is slowly turning down again. I am waiting to hear from Pfizer to see if I can get patient assistance, right now my doctor is keeping me on samples.
I took a horrible fall about a week ago. Off of a chair and slammed into the refrigerator and the floor. It kicked off a horrible flare and the muscle spasms and dystonia kicked in hard. I made an appointment with my massage therapist to see if she could help. Massage is painful for me as an RSD patient, but the results are so totally worth it. After my treatment, I was walking much better with less pain.
I haven’t really skated in months, just a few minutes here and there. My pain was so bad with my legs that even walking is difficult. My goal is to slowly build my ability to skate back up and raise my endurance and strength. I WILL be back on skates on a regular basis. I refuse to give up.
Lyrica has caused some rapid weight gain, and I put on a lot of weight because for the last several months my activity level was ZERO. My oldest daughter has an interest in nutrition and she has been learning so much. I let her set up a plan for me and it is working! I have goals and I WILL meet those goals.
Holistic Medicine
Another thing that I will be adding to my care is treatment from a Holistic RN. The Rustic Apothecary uses natural ways of helping the body and soul to function and heal. I am so excited for this new step in working on my wellness. I’ll be sure to blog about that after my appointment.
Positivity
I have been in a more positive place and I think that is important. If there are things in your life that make you stress or unhappy, get rid of it! Life is too short to drink poison willingly……
Girl on Fire
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One day at a time and with your positive attitude and will power, you will get through. I know from seeing you, how bad you are and no matter how much you blog and try to explain, unless someone is in your shoes, they have no clue!
Keep up the fight and know I am here for you, each step of the way, I respect you for not giving in, and remembering to “Suck it up” for this continuance long and painful road ahead. We together, with all those who care for you, will continue searching for the treatment, anything, to help you live as normal a life as can be.
Love you
mom
I love your Mom’s response.
We have been friends for how long? 6 years? Ups and downs…in and out of contact…but I have always cherished our friendship as it is true…there is nothing we gain by being friends…except knowing the other is there if we need them. How awesome is that.
I read your posts…your fb updates…and it makes me truly sad because I cannot help you, there is no cure, or even real treatment…but I am also proud…and in awe….because I do read about RSD and how terrible it is….and yet, no matter what you have going on…you put one step in front of another…always….you are always moving towards making your life better…and I am proud to call you my friend.
You know what you remind me of….I think you have a little “hope” sitting on your shoulder, because everytime you say “I am not giving up!” I hear this:
When the world says, “Give up,” Hope whispers, “Try it one more time.”
<3 you