Hi Mom, Please not to worry about sharing your pain with us. How many tears have been shed by those with RSD? I know a huge amount.I've had RSD 15 years, and I'm 61 years old. I had breast biopsy, benign, but immediately following the surgery I started having frozen shoulder. Wasn't diagnosed for 4 years.
When I was 25 my mother died of cancer. I had the privilege of being with her during her surgeries, going to MD Anderson Cancer Hospital in Texas, Mexico, and the final 4 months. The pain and loss was overwhelming. Then my father became ill early, and cared for him thru his death. I went thru counseling for 2 plus years weekly visits, sometimes twice a week. Journaling was a huge help to work thru my feelings of loss & grief. The stages of grief include anger, so I wrote many a letter, reading it to my parents. I was so sad and missed them so much. It was even worse, that's my mother's death at age 46 was because of neglience of her Dr. We went thru a trial and court agreed 100% and my Dad's death was during the night and I found him. I had a wonderful therapist. When I was diagnosed full body RSD, my neuro suggested I see a psychiatrist. So for the last 6 years I've had a wonderful psychiatrist, who also is a neurologist, and pharmacologist. I've worked thru a lot of feelings including issues with my husband. We have one daughter-who waws 15 when I got RSD. We were so active, playing tennis 5 days a week, traveling, water and snow skiing-other sports-so difficult to loose all of that. RSD is change, not just for us, but our family. Our daughter, who now is married 10 years misses terribly our special times together. Thankfully she and her husband are extremely close and both are active.
At the beginning, my husband didn't 'get it' but when he started reading on neurotalk, he began to understand the tragedy RSD brings. Our daughter is a court reporter and even had court cases of RSD. Hearing what others went thru was very painful to her. They both went with me to therapist and that helped them. We live in Arizona. My husband started doing all the grocery shopping, picking up my meds etc. My taste buds changed, so am mainly vegetarian except salmon and scallops. My husband grills fish and meat, He picks ups salads already ready to serve. Fresh fruits, etc. I do a little house work, but he does the majority.
I always thank Darold for going to the store and pharmacy. Our daughter and son in law help too, which we are grateful for. I used to keep my pain and feelings to myself to spare my family. But, felt that was not healthy-not honest. When I started sharing my feelings and how bad it was, my family started really understanding how bad RSD is. They all started researching it and was so much more compassionate. A huge difference. RSDSA shows RSD on the McGill Pain Index as 42 in a scale of 1-50. I know this is miserable- I have a room-my pain room that has a single bed in it, tv, books, music, I need quiet time- nap time sometimes. That helps. Walking is so important-when I slack up on it, my husband says you are supposed to walk-I read it on the RSD web site. Before he understood, it was terrible-I felt like getting my own apartment, but now I feel compassion from him and others. Do you have a printer? If you print out particular articles-that should help others understand more what this is like. I hope this helps. Do you have a support group in your town? I've taken friends and family members with me.
I still have a lot of friends that don't understand this and have withdrawn. It's sad, but I've found I can talk a little to some and not at all with others.
I still journal and that is helpful. I see my psychiatrist once every 2 months-First 5 years saw him once a month. It helped tremendously. I'm so grateful I found him (in the yellow pages) smiley face. Please continue to communicate with us. We are here for you. One of your new friends, loretta