RSD/CRPS

What is CRPS

CRPS is a rare, neuro-inflammatory syndrome characterized by intense chronic pain, swelling, tropic changes, vascular changes, and functional impairment of the limb. It can become incredibly debilitating.   CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain. The level of pain is measured as one of the most severe on the McGill University Pain Scale & can spread to other limbs and even your internal organs.  The syndrome shows variable progression over time and is nicknamed the Suicide Disease.  It starts from an injury & It is no longer at your injury site, its throughout your entire body.  It effects your nervous systems, immune system and your brain.  

There is no cure.  

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CRPS-I is a syndrome characterized by a continuing (spontaneous and/or evoked) regional pain that is seemingly disproportionate in time or degree to the usual course of pain after trauma or other lesion. The pain is regional (not in a specific nerve territory or dermatome) and usually has a distal predominance of abnormal sensory, motor, sudomotor, vasomotor/oedema and/or trophic findings. The syndrome shows variable progression over time. CRPS-I occurs after any form of trauma, particularly a fracture or soft tissue lesion. CRPS-II occurs after nerve damage.

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Just SOME Symptoms  : 

• Pain that is described as deep, aching, cold, burning, numbness and/or increased skin sensitivity

• An initiating injury or traumatic event, such as a sprain, fracture, minor surgery, etc., that should not cause as severe pain as being experienced or where the pain does not subside with healing

• Pain (moderate-to-severe) associated with allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower

• Continuing pain (moderate-to-severe) associated with hyperalgesia, that is, heightened sensitivity to painful stimulation)

• Abnormal swelling in the affected area

• Abnormal hair or nail growth

• Abnormal skin color changes

• Abnormal skin temperature, that is, one side of the body is warmer or colder than the other by more than 1°C

• Abnormal sweating of the affected area

• Limited range of motion, weakness, or other motor disorders such as paralysis or dystonia.

• Can't control body temperature.  

• Progresses to Central Sensitization Syndrome, which has no cure either.

• Can cause Seizures, High Blood Pressure, Heart Issues, Dental Issues, GI Issues, Nausea, Diarrhea , Dizziness, Balance Issues

• Pain generally starts in one limb; however, it can present in the trunk (spine, abdomen, chest wall).

• Depression, Anxiety, Panic Attacks, Tremors, Spasms, Throbbing, Migraines, Full Body Pain, Acid Reflux, Chronic Fatigue, Aching bones & Joints, Osteoporosis, Bone Resorption, Atrophy, Trouble eating, Trouble Swallowing, limb turns purple or blue in some cases, Stiffness in limb, can lead to paralysis and weakness.  

• Tissue Wasting, Contractures.

• Brain Fog, Short Term Memory Loss, Trouble with  Concentration, Sleep deprivation, chronic sleep issues,  heart palpitations, heart racing, Arthritis,  and balance issues.

• Central Sensitization Issues:  Light, Sound, Smell, Food Medications & Hearing

• Chronic Fatigue

• Feels like your limb is on FIRE and can alternate to Burning Cold as Ice 24/7

• Chronic stomach pain

• Ringing in your ears

• Sensitivity to air just toughing your skin creates extreme pain.

• Passing out (Syncope), cold hands and feet , temp intolerance, lightheadedness, dizziness, heavy sweating(hyperhydrosis), hair loss, bowel and bladder issues, mottled legs.

• Abnormal walking or falls, muscle jerks, difficulty maintaining precision of small movements, spells and seizure like episodes

• Sensory Amplifications, No return to normal, no self adjustment to pain-Central Sensitization. Pain begets more pain becoming autonomous.

• Malfunctions your entire nervous system causing many health issues.

• Change in skin texture

• Dystonia

• Pain pathways in your brain become permanant.

• Skin Issues, sores

 

*There are no  medication to help these chronic conditions.  Central Censitization (CSS)  causes increased sensitivity to medications.

Nerve Blocks:  50/50 chance of a treatment and are only temporary and increases dangers of spread and the pain signals coming back stronger without ever lowering.  CRPS & CSS (Central Sensitization Syndrome) expected to worsen over time, there is no cure.  Once CRPS progresses to CSS a Spinal Chord Stimulator will not work.  Neuropathways are changed in the brain and cannot turn that off or fix it

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Some Alternative Treatments:

Not all patients can tolerate pain medications and the side effects. Fortunately, there other options. Seek out counselors, perhaps a psychologist/psychotherapist and a nutritionist, who can teach you new coping skills for managing and controlling pain, including:

• Distraction

• Visualization

• Meditation

• Biofeedback

• Breathing Exercises

• Stress Reduction

• Yoga

• Anti-inflammatory Diets and other methods

• Exercise

 

Create a Team Strategy – It takes a village to treat and live with CRPS/RSD. The first thing to do is to put together an interdisciplinary treatment team – with you as the captain. Depending on your needs, it may consist of your family doctor, a physical therapist, an occupational therapist, a pain management specialist, your caregiver/s (family and/or friends) and others.  

https://rsds.org/living-with-crps/coping-strategies/

• Get a service dog. Many CRPS/RSD patients are getting along much better with the help of specially trained service dogs, or other animals, and enjoying the unconditional love that man’s best friend brings into any household.

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MY STORY

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My name is Kelly,  I'm a mom of five wonderful kids and grandmother as well.  

2020 was a life changing year for many families and ours was turned upside down in a way no one was expecting.  An injury caused a diagnosis of Reflex Sympathetic Dystrophy now known as Complex Regional Pain Syndrome.   Its also progressed to Central Sensitization Syndrome. This caused Severe Osteoporosis from the bone resorption,  Arthritis & Atrophy.  I deal with almost all the symptoms listed above and probably missed some.  Due to this life changing event, I have been in a wheelchair since 2020. I have yet to take any steps, I am still non weight bearing.  Spend most my day bedridden . Even going outside causes pain and just sitting up causes swelling and higher pain levels.   All this happened from a broken foot.  Since breaking my fifth metatarsal in my left foot,  which caused the CRPS ,  I've also fallen breaking my heel two more times, my ankle and a toe.  The pain has spread to many parts of my body including my left foot to hip, my right foot on up, both my hands, hips and face.

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 Since becoming disabled, can't walk, have trouble doing daily tasks or functioning, lost my independence, dealing with chronic illness and pain 24/7, being mostly bedridden,  losing my career and ability to do my photography,  has been  soul crushing for me.  I don't have the heart to delete the photography part of the website, as its been my life so It will remain on the site.  My son & daughter has interest in photography and as their talent grows they will take over that position.  

 

Since we are a house full of Artists, the candle and gifts shop has re-opened, thanks to the help of my wonderful family. In hopes to help ease the financial burdens of a complicated and debilitating disorder.    You can read more about the relaunch for candles for a cause in our blog.   

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Netflix Documentary :  Take Care of Maya

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