It’s hard to explain exactly what daily life is like. People ask me what’s new, family and the few friends I have. And to be honest not much changes. Because to be blunt, I barley left my bed until my new wheelchair arrived last week.
Until the motorized moving pink robot arrived last week I was in a prison. Like a giddy child on Christmas morning awaiting to see what Santa has brought I was rolled out to entry way where my Pink throne awaited me. My new motorized wheelchair is PINK and fast and goes every direction. And having freedom is amazing. It’s indescribable. I relied on everyone for everything. Now I run into walls and bang my paining body, but freeer than before. But my body says you’re in prison.
My body is a prison with the walls of my bedroom locking me in. They are blue but perhaps in my mind have faded to grey. My bed that supports me is no longer soft as my muscles are weaker. The bed and sheets hurt.
My body is a prison. I can’t even pick up my phone because my hands are too flared. I can barley eat or drink from the pain of my failing, flailing body and rely on iv fluids for hydration coming out of a tube through my chest. My body is a prison.
My body is a prison my arms and legs they move erratically when I’m in too much pain. My limbs move as if no connnection to my body, they move with force and my back arches as the pain sears through. I have no control. I even hit myself. I stutter. I am out of breath and often nauseas dizzy and even pass out hearing nothing but distant voices calling my name. My body is a prison.
My body is a prison. The pain is a prison. And I don’t normally write about because I don’t want to upset the family I have or make it to hard to read. But the reality needs this awareness. I don’t want to stop the conversation. I want to start a conversation about CRPS. I want Awareness and acceptance and I don’t want to be told this is made up or somatic. I want help for me and everyone else battling to their very very best with a horrifying illness.
- It can stems from a trauma of some kind. Though this is not always the case. And the word trauma can be any kind, from a needle prick, the flu, to a fracture it’s a medical word and does not mean emotional trauma.
- There is no cure and it is chronic meaning life long. There are some treatments, however crps is mostly likely to have a positive outcome if treated correctly within the first 3 months of onset of symptoms.
- This is the most painful disease at the top the McGill Pain Scale and it is known Suicide disease from those that have lost their lives due to the pain from this disease or complications there of
- Tremors, body movements and dystonia are and can be a symptom
- It can happen to anyone at any time though it’s most common in women around 40. Kids often get it though too like I did when I was 10. Some believe the reasoning behind the theory of children being able to recover from this disease is the surge of hormones on brain still taking shape.
- It is not studied in medical school and less than 1% of research dollars are put towards Pain disease. This means most doctors don’t know about it, treat it or diagnose it. Some doctors claim there is actually over diagnosis. However, there is a great deal of evidence that points to the contrary.
- There is no one official test you can only be diagnosed by exclusion Some doctors believe thermography is the best tool we have.
- Used to be known as Causalgia when it was first documented during the Civil War. It was also known as RSD and still goes by many other names today RND, AMPS shoulder-hand syndrome, Sudecks dystrophy and many others
- CRPS does spread usually laterally or horizontally and occasionally diagonally. It does also spread into the organs and can cause but not limited to:
- Vascular and circulation
- Gynecological (menstrual/ birthing)
- Syncope/ dystautanomias
- CRPS is not the same as somataform Münchausen syndrome or conversion disorder
- Many are often misdiagnosed and see several doctors and on average over many years just to receive a diagnosis before even attempting a treatment.
- Treatments are medications, nerve blocks, spinal chord stimulators, transcranial magnetic stimulation, hyperbaric oxygen, immunoglobulin therapy (IVIG), ketamine, lidocaine, physical therapy, aqua therapy, psychological therapy, alternative therapies, etc.