and so my story begins …. Most of you would not know that back in December of 2011 while living in Jamaica I suffered two fractures in my left foot (metatarsals 1 & 2). I continued to suffer in pain although I was told that both bones had completely healed.
I got another doctors opinion in England where I was told I had the beginnings of arthritis. I came to America and got another opinion in 2016 being told I had arthritis in my foot.
The pain continued , with medical advice I was walking with a walking stick as I would fall at times. In the early part of last year I was shocked when I was informed that my foot was still broken ( I have the original x-rays) added to that not only did I have osteoarthritis I had osteonecrosis as well. A decision was made that I should have surgery and have my mid-foot fused together. Using a titanium plate and 5 screws I had this surgery in December 2018. This was 7 years after the original fractures.
I then found myself in excruciating pain it was so very bad much worse than natural childbirth or postpartum hemorrhage, I kept pleading with the doctors to help me. I went back and forth to different hospitals and to various specialists eventually about 3 months ago I was given a reason for my pain. I was diagnosed with a rare disease called Complex Regional Pain Syndrome formerly called Reflex Sympathetic Dystrophy.
So exactly what is C.R.P.S. / R.S.D. you may ask?
Complex regional pain syndrome (CRPS) is a chronic pain condition. It causes intense pain, usually in the arms, hands, legs, or feet. It may happen after an injury, either to a nerve or to tissue in the affected area. It’s said rest and time may only make it worse. It is a disease of the central and autonomic nervous systems.
The disease is so rare that few doctors know anything much about it and research continues. The key to this disease is for it to be diagnosed and treated quickly. This helps to prevent this disease which is not curable from spreading.
Treatment focuses on relieving the pain, and can include medicines, physical therapy, and nerve blocks.
Also connected with this my allergies have gotten worse and I have been having anaphylactic reactions, I now have an epipen but urgently need allergy testing done as this is now life threatening.
Just how painful is this?
It is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so rare and painful it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” http://www.rsdhope.org/mcgill-pain-index---where-is-crps-pain-ranked.html
This is where you come in, I really need your help. I have been in pain and discomfort day and night since my surgery its been truly overwhelming and exhausting. Some days are better than others, some days I can’t move from bed and sometimes I am in too much pain to wheel my wheel chair. My treatment has been limited due to the medical insurance that I have. I need different therapies to keep me as mobile as can be which includes physical therapy, water therapy, nerve blocks, pain medications I need help with transportation to and from the hospital, clinics etc I also need different equipment to help me better ambulate, nutritional supplements have also been shown to be beneficial. I need to see various specialists, neurology, rheumatology, pain management, orthopedics also an allergist I may be referred to other specialists and I definitely need more scans and various testing done.
I am currently unable to work. I do my best to smile through each day but it really is very tough.
Thank you in advance for your love and support!
No donations yet. Be the first to help.
Welling, Greater London, United Kingdom