Peripheral Neuropathy (Feet)
I have painful feet. I was shocked when the doctor told me that I have peripheral neuropathy, but it explained why I could not walk without being in horrible pain. This affects my body in that I am in constant pain and it does not go away.
When this started, both my feet began burning. The pain intensified when I tried walking and it felt like I was walking on glass because the stabbing pain was overwhelming. I had to get a walker to help me get around because it just was impossible to walk without it because my feet became agonizing.
Keeping up with daily activities
I refused to let my diagnosis keep me from taking my walks and doing my daily activities. I had to change my shoes because I could no longer tolerate my usual shoes. I got inserts and began wearing shoes that helped people like me. I often wear these sandals that are extremely helpful and do not cause me that much discomfort.
After a walk and I stop moving my feet begin to burn and hurt so much but I am proud of myself for getting up and doing my best. It is not easy living with this pain and often having days where walking is extremely difficult, but I think my mental fortitude is stronger and it helps me get through the day.
CF affects more than you think
I do want people to know that people with CF suffer in more ways than one. We go through so much more than everyone thinks we do. Our bodies go through so much pain in various ways that I do not think a lot of people could understand. It is not always the lungs that are affected but our entire body that goes through the motions of suffering and pain.
I would never in my life think that I would be going through this because I am such an active person. I love working out and taking walks, running, and swimming. The pain I experience has impacted these areas of my life because when my feet feel like they're on fire I cannot walk as much as I hoped or do other things.
Grateful for help
I am grateful for the medications and therapies that have helped me with my neuropathy, but I will not lie and say that the pain has left because it is still very much there. I am grateful for my walker because it has helped me get around when I cannot by myself sometimes.
Having neuropathy is extremely hard and my heart goes out to anyone who goes through this as well. My family has been amazing and really supports me; I can honestly say that without them it would be exceedingly difficult to go get groceries and do other errands when I have difficulty walking.
Moments where my pain is overwhelming, I do sit and cry because I am mentally drained from it. To say that this does not mentally drain you when you go from being a very independent person to being reliant on others more than what you are used to is hard. I am very blessed to have family members that truly love and help me in every way. For that, thank you!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?