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Is there really an oil for that?

For those of you new to my blog, I have a rare disease called complex regional pain syndrome (CRPS). My body spends constant pain signals that my brain interprets as real threats instead of “white noise”. This means I, like so many others with my disease, am in constant pain every minute of every day.

I have tried close to everything. Every, “my cousins-ex-sister’s-boyfriend’s-kid’s-cousin had that and tried xxx”. I have sought treatment from rheumatologists, pain management specialists, osteopathic doctors, neurologists, optometrists, chiropractors, physical therapists…the list goes on. I have tried every pill thrown my way, participated in a clinical trial, got a chest IV port. I have tried non-medical and natural options; I stopped eating gluten and other inflammatory foods, worn compression socks, got my yoga on, used TENS-like devices, joined support groups, learned meditation. Recently I’ve slathered on essential oil concoctions.

Please feel free to eye roll but stick with me for just a little longer.

I have been SUPER skeptical about this whole essential oil trend. I’m a scientist. I’ve done pharmaceutical research. I’ve run experiments and physically seen medications work effectively. I was not about to trust some mommies peddling “magic” oil claiming to realign my cells.

When I first used essential oils it was to humor my grandma. I’d do anything for that lady. She rolled some essential oil blend on the back of my head for a headache. I didn’t believe it would work. I didn’t want it to work. I’m sure you can see were this is going, it didn’t hurt, it kinda helped *sigh*

After continuing to see small differences such as this, handsome hubby and I decided to give essential oils a 6-month trial period. I was not going to quit any medications or treatments, but give autoimmune and nerve damage blends a try.

I mostly stuck to topical treatment and diffusing oils in the air. I found some relief from sore throats, coughs, headaches, sleeplessness, inflammation, and slight help with nerve damage pain. I started to reach for my essential oil blends along side my medications. At the very least most of them smelt good.

Frankincense isn’t going to cure your kid’s autism, your grandpapa’s cancer, and isn’t the second coming.

I still take medications, go to the hospital weekly for infusions, regularly visit the doctor, get vaccinated, will use antibiotics as prescribed and use my microwave. I have not traded in my medical treatments for essential oils. There just might be something to supplementing essential oils in your life that helps.

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The “Suicide Disease”

When I first received my diagnosis of complex regional pain syndrome I had never heard of this disease.

When I first started researching this disease the more frustrated I became. For CRPS being the most painful condition known to the medical community (see pain index below) there is very little research done. No definite known cause, no diagnostic test, no proven treatment course to follow, no cure.

rsdhope.org
rsdhope.org

That does not mean those diagnosed with CRPS are without hope or crippled for the rest of their lives. The more I researched the disease the more I was able to understand what was going on at the visible level as well as at the molecular level.

From what I understand, CRPS is speculated to be caused by minor (type 1) or major (type 2) nerve damage. CRPS does not affect everyone. For those that it does it usually starts in a limb that has been injured, has pain disproportional to the injury, and slow to heal. (This describes every injury I’ve every obtained). CRPS spreads to different parts of the body in 70% of cases. Systematic CRPS where the entire body is affected is possible, but rare.

The symptoms associated with CRPS are due to the constant “on” state of the body’s alarm system. Nerves send messages (I like to picture them as balls) all the time and the brain interprets which to respond to. In the case of CRPS the nerves in affected areas send too many pain messages to the brain. The NMDA receptors (I like to picture these as baseball gloves catching the ball messages) in the brain are over-sensitive and respond to ALL of these signals. The brain’s pain response is to protect the body against a threat to the body and respond with pain if there is one. In the case of CRPS there is no threat, but the brain is responding with pain.

uspharmacist.com
uspharmacist.com

The body’s response to the perceived threat are the visible and invisible symptoms of CRPS:

  • Constant burning pain in affected area/extremity
  • Disproportionate pain in the affected area
  • Increased pain due to stimuli such as temperature change, sound, vibration, touch, movement of joints
  • Increased or decreased nail and/or hair growth in the affected area
  • Thin, glossy skin
  • Osteoporosis
  • Weakness
  • Coordination loss and/or incorrect perception of the affected area in space

The autoimmune responses in this condition include:

  • Swelling of the area
  • Excessive sweating in affected area
  • Changes in skin temperature and/or skin color (can change white, red, or blue) of affected area
  • Joint stiffness, swelling, damage

Symptoms can differ per person and can also change over time. This makes this disease difficult for physicians to pinpoint. The most common symptoms are pain, swelling, color change (usually redness), change in skin temperature, and hypersensitivity to cold and touch.Complex Regional Pain Syndrome can not be treated, but the pain can be managed with lifestyle, diet, medication, and physical therapy.

Not all CRPS symptoms are visible to others. That’s one of the problems with “invisible diseases”. Many people think if they can’t see the pain you are in or each and every one of your symptoms then you must not be that sick.


*I am not a medical doctor, this is not a diagnostic tool. Please consult your doctor if you are having above symptoms. Article is original content with information obtained from my doctors at UW-Health, MayoClinic.org , rsdhope.org, powerofpain.org, uspharmacist.com.

March Madness for a Spoonie

As a person with autoimmune disease and chronic illness activities I once didn’t give much thought have to be thoroughly planned. Will I have enough spoons, how to pack medication and my cane, is the venue wheelchair accessible, can tickets be refunded, can a day be blocked off for rescheduling, how much walking?

“Normal” activities are no longer “normal”.

In March I get a break from all the forethought that must go into each activity. I do not have to plan or worry if I need my cane or wheelchair or have a contingency plan. With college basketball March Madness everyone sits on the couch! Watching sports often requires little to no spoons. This is a past time my husband has slowly taught me to appreciate.

With college basketball March Madness everyone sits on the couch! Watching sports often requires little to no spoons.

Critter Abby’s picks for 2019 based on mascots most likely to be her friend…


To all my spoonie and non-spoonies I hope your March Madness is enjoyable and your bracket un-busted!!

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10 CRPS facts of life

1) You are in pain every second of every day even when you look healthy.

2) The opioid crisis is effecting your quality of life. It’s punishing pain patients for addicts use and behavior.

3) You’ve lost friends due to suicide from pain.

4) Your favorite days of the week are days you receive treatments.

5) You feel you aren’t receiving adequate treatment.

6) If you had cancer people would understand how sick and in pain you are.

7) You won’t go urgent cares or emergency rooms even if you’re dying. No one there has heard of your disease and just makes it worse.

8) You constantly worry about the disease spreading.

9) You know more about your disease than most doctors.

10) The hospital is your second home.

 

Plow & Hearth

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