This post was originally posted on Blogger October 20, 2024.
This post was originally posted on Blogger July 12, 2024.
Up until I fell, I’d never heard of Complex Regional Pain Syndrome (CRPS) which is a complicated and painful disease of the central nervous system in which pain from a physical trauma (usually a limb) outlasts the expected recovery time. The injury pain when you have CRPS is heightened and far greater than it would be in a person without CRPS, and for most people it doesn’t go away. In my case it actually spread from my ankle, to both my legs in their entirety. CRPS usually starts with an injury to a limb, and manifests as excruciating pain, swelling, limited range of motion and changes to the skin, hair, nail growth and bones of the affected area. It may only affect 1 limb and then spread throughout the body. 35% of affected individuals report symptoms spread throughout the body.
CRPS is basically the most painful medical condition that you can have, with it being rated higher than cancer pain, unassisted childbirth, fibromyalgia, and amputation, according to the McGill Pain Index. The McGill Pain Index, also known as the McGill Pain Questionnaire, was developed at McGill University in 1971, and is a self reporting questionnaire that allows individuals to give their doctor a good description of the quality and intensity of pain that they are experiencing, and the rating goes from 1, being extremely mild pain, to 50, being most severe. CRPS rates at a 42/50. Some say it's a 46/50. Because of this, and the mental health struggles that living with extremely high level and intensity of non-stop pain, CRPS is sometimes referred to as the "Suicide Disease", and with good reason. The unrelenting severity and wide variety of different debilitating pain sensations being sent to the brain all at the same time causes a whole host of mental health issues and feelings of being overwhelmed. It literally makes me feel like I'm crawling in my own skin, and time stands still. When it's that bad, and nothing is helping, and I am only able to go moment by moment, sometimes minute by minute, it takes a lot out of me.
There are two types of CRPS: CRPS Type 1 and CRPS Type 2. The difference is Type 1 your injury that caused CRPS did not damage your nerves, and Type 2, the injury that caused CRPS did have nerve damage as part of the injury. I have Type 2, as well as a severe form resistant to most treatments that others report success with.
So what does CRPS feel and look like? Symptoms of CRPS are different for each person affected. Most people do not have all the symptoms listed below, but I am that rare person that has most of them. My CRPS came on aggressively, spread quickly, and the pain has not stopped since I injured myself. I don’t even remember what it’s like not to live in pain and hurt anymore.
Symptoms of CRPS are different for each person. Most people do not have all of the symptoms listed below. CRPS-related pain can be constant, come and go, or get worse when the limb is touched or submerged in water. Some of the symptoms of CRPS are:
Unprovoked or sudden pain that can be constant or change with activity. A person might feel a “burning” or “pins and needles” sensation, or as if the affected limb was being squeezed. Over time, pain can spread from the first injury site to most or all of the rest of the arm or leg. In rare cases, there is pain and other symptoms in a matching location on the opposite limb. This “mirror pain” may indicate that a person’s spinal cord neurons are involved.
This is what happened to me. I injured my left ankle, and it spread up my left leg, and then hopped across to my right leg, and then spread to that whole leg.
The pain sensations that I feel simultaneously are: A deep ache in my entire legs from the bones out, sometimes throbbing so badly that I can feel the pain like a pulse, and even hear it pulsing/beating like you would your heart rate. My skin hurts and is often burning from the inside out. I get electrical jolts that shoot up my legs with every step I take, and if I stand too long my legs start to burn further. They get really painful pins and needles, starting in my feet, with my skin feeling like I’m submerged in needles pricking me, while also feeling a painful numbness. If wind blows on my legs, it feels like I’m being stabbed with knives, and when things like my pants and socks touch or rub against my legs, it feels like knives or nails being dragged across my legs. I get sharp jolts that shoot up my legs into my back, and I can’t stand for very long or my legs experience so much burning, painful numbness, and pins and needles, that they don’t feel like they are a part of my body anymore, and it makes walking difficult.
Excess or long-lasting pain after use or something that made contact with the affected area. A person with CRPS may notice more sensitivity in the affected area in addition to their baseline pain, known as allodynia. Allodynia causes the skin of the affected limb to be very painful with light touch or normal physical contact and using the limb is very painful. A person may also notice severe or long-term pain after a mildly painful stimulus such as a pin prick. This is known as hyperalgesia.
I experience this in a big way. My legs are super sensitive to touch, and physical contact with my leg can be excruciating and sometimes leaves me needing to catch my breath. The heightened pain is also felt after the painful stimuli ceases contact with the affected area, sometimes taking hours to go away.
I also have severe temperature sensitivities to my legs. Something warm feels scalding hot, and something cooler feels really icy and cold. It makes showering a traumatic experience that has contributed to the severity of my medical and physical trauma PTSD. The water hitting my legs feels like pins, nails and sharp things are being shot into them, and the temperature of the water either feels like it’s burning me or that I’m in an ice bath.
Changes in skin temperature, skin color, or swelling of the affected limb. The injured arm or leg may feel warmer or cooler than the opposite limb. Skin on the affected limb may change color, becoming blotchy, blue, purple, gray, pale, or red. This indicates changes with blood flow to the area.
My legs are a pale bluish-purple colour with red blotches, and they can swell up and look shiny, depending on what I’m doing. They are also colder than the rest of my body.
Changes in skin texture can also appear. Over time, if the person’s affected limb doesn’t get enough oxygen and nutrients, the skin in the affected limb can change texture. In some cases, it becomes shiny and thin, in others thick and scaly. Avoiding washing or other contact with painful skin may also contribute to these skin changes.
My skin looks like a combination of both shiny and thin and thick and scaly, and it’s almost like I can see through the texture into their discolouration under my skin.
Sweating and nail and hair growth are also an indication of CRPS. On the affected limb, the person’s hair and nails may grow very quickly or not at all, and they may notice patches of profuse sweating or no sweating. All of these functions are controlled by a person’s nerves and affected by blood flow to the area.
I sweat, a LOT, and my legs are often clammy. My toenails grow at a snail’s pace and my leg hair is also patchy, being thick and dark in some areas, and no hair growing at all in other areas.
Stiffness in affected joints are also a painful problem. A person may try not to move the affected limb as much to avoid pain. As a result, their tendons and ligaments lose flexibility, become stiff and more difficult to move, and then lose function. Tight ligaments or tendons also may sometimes rub or pinch nerves, making CRPS symptoms worse.
Since CRPS is in both my legs, I don’t have much of a choice but to move them, despite it causing increased pain. That being said, I do have to manage not doing too much on my feet at once because of the pain flare ups it causes. I have lost a lot of muscle mass and it has restricted my movement in my legs.
In 2008, when I was diagnosed, I was told that I would be in a wheelchair within 5 years, because of the severity of my CRPS. That scared me. I had two young kids at home, and wondered how I’d manage if I couldn’t walk. My specialist said it’s basically a use them or lose them sort of thing, and that kicked me into high gear. I was determined not to lose the ability to walk. I weaned myself off my crutches that I’d been using since the accident, and moved to a cane which I used for a number of years. When I moved to Galiano Island in 2017 I weaned myself off of the cane entirely. I’m not great on my feet, but I can still walk. Last year I started a low impact fitness routine using Apple Fitness Plus, and I feel like I’ve made a lot of progress in that respect. My mother-in-law and I do them together twice a week.
Another symptom is thinning of the bone or excess bone growth. CRPS is often associated with thinning and remodeling of bone that may also affect the bone marrow. In rare cases, the bones of CRPS-affected limbs may become rough or enlarged, such as after a poorly healed fracture or from a bone cyst (sac of fluid). This can irritate the surrounding tissue and nearby nerves to either initiate or prolong CRPS. These bone abnormalities are often visible on X-rays or other imaging and can help doctors pinpoint the location of nerve damage and identify the best possible treatments.
To be honest, I’m not sure if I have this symptom or not, but it would not surprise me if I went for x-rays or an MRI and they found some.
Living with CRPS has been the single most challenging aspect of my life. I don’t want to say it’s completely ruined my life, but it has certainly tried to, and done a lot of damage in the process. If I didn’t have the family and friends I have, I don’t know if I would have made it this far. They have been a great source of support and comfort and I appreciate all that they do to help me.
I also want to take this moment to thank everyone who has reached out to me with positivity, interest and kindness since I started this venture. Some are even excited that I am discussing this very important topic, and, I have to admit, I'm excited too, to see where this goes.
Chronic pain has a long reach, and affects so many of us. So it’s really important we talk about it. It's time to lessen the stigma attached to people with chronic pain (that we are just in it for the drugs, being one of them), and have open and honest conversations with each other about how we can support each other. It often leaves the person feeling isolated and alone in their suffering, even when they are not, so talking about this is really important.
My long term goal is to help others living with chronic pain feel supported in living their lives the best way they can, and making changes, and to lessen the devastation that chronic pain brings.