The following informative piece was written by one my followers Pete Lacey (Thank you Pete) Pete also runs a Facebook group (Big Steps Little feet/CRPS chronic pain info) where he helps support people who are suffering with chronic pain. If you would like to contribute to my blog please send me a message, I would love to hear from you.
So what is RSD/CRPS?
(Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome)
To start, it is the most painful medical condition known to man at a 45/50 on the McGill pain scale. Because it is so painful, and it is hard to find a good doctor to treat the condition, CRPS (Complex Regional Pain Syndrome) has the grim nickname ‘The Suicide Disease’
RSD/CRPS is a disease of the central and Autonomic nervous system. Within the Autonomic nervous system there are two branches: The parasympathetic OR ‘Rest to Digest’ mode and the sympathetic OR ‘Fight or Flight response.
There are 2 kinds of CRPS, TYPE 1 and TYPE 2.
TYPE 1 occurs without a direct injury to a nerve, so many people with TYPE 1 CRPS do not know why their symptoms started. TYPE 2 CRPS, formerly known as Causalgia, occurs after a direct injury to a nerve causes some degree of damage.
Type 1/Type 2 Symptoms
Most people experience;
- Throbbing and cold pain.
Other Symptoms may include:
- Allodynia: Hypersensitivity to light touch
- Hyperalgesia: Extreme Hypersensitivity to pain
- Changes in hair and nail growth
- Skin colour changes
- Skin Temperature
- Changes to sweat patterns
- Stiffness in the joints
- Temporary Paralysis
- Delayed wound healing
- Hypersensitivity to sound and light
- Weight gain/Weight loss
My personal experience with CRPS is that it takes your life, you lose your friends, family, work colleagues because of the Stigma INVISIBLE ILLNESS. What you can’t see you don’t know, you don’t look sick.
After my accident in 2012, from a crush injury to the left leg, it took 26 months to be diagnosed, which in this day and age is way too long. Awareness is essential. Before a diagnosis was made we, as a family, had nowhere to turn, they were going through the severe pain in the same way. I would often have a sneaky cry because we did not know if this was going to stop, nor could any Doctor tell me what was going on. I looked into the scary Joys of Google and I did not like was I was reading.
After reading loads of articles and joining groups on facebook, I could not believe how many people were suffering from this, it was scary to know there is NO CURE.
Having most of the symptoms (as above) I then was diagnosed with Leg Emphysema and fasciitis in the same leg as the CRPS, which totally took over my life.
With the cocktail of Meds, I’m sure most of you will understand the Brain fog, fatigue really gives you one, so I opted for a spinal cord stimulator (SCS) which I’m finding is lowering my pain to this day. This has enabled me to get a form of life back and help others, so I started a chronic pain group https://www.facebook.com/groups/BigstepsCRPS/ People need to know help and support is out there.
I’m taking each day as it comes at the moment, as not everyday is the same, meds, SCS for the chronic pain and as for planning your day, ‘NO such Thing’.
I have linked up and met some wonderful people on my journey and long may it continue. My family have been amazing.
We have put together an amazing team of people to help with research, loads of experience in Rare Diseases. 2018 will be a good year, it will be amazing to be part of our worthy cause.
CRPS can be a lonely place, Please don’t feel alone come join us.