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portiasnextadventure · 6 years

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Neuropathy

Since September 2016 I have been struggling to understand why I have nerve pain/itching. I have seen specialist (neurologist), chiropractors, pain management doctors, and an allergist. Based on the nerve test, which was incredibly painful, I don’t have nerve damage. In reseraching neuropathy I have discovered the pinching sharp pains I experience all over my body could be the result of inflamation to nerves in my spine. Which made since in 2016 since I was experiencing the worst of my herniated disc/sciatica pain. After seeing specialist that fall with no solid answer as to what I was experiencing or why it was happening, I did find relief through pain management for my back. Do to my many allergies, I cannot take opiods since it causes severe migraines and was instead prescribed a nerve blocker, gabapentin. It not only helped with my back and sciatica pain but also reduced my prickling, poking, nerve pain. I didn’t realize this until April 2017 post-surgery when I was no longer taking gabbapentin. With the random nerve sensations returning, I sought my allergist to see if it was related to my multiple food and environmental allergies, but nope could be nerve related and he prescribed gabapentin to see if it helped. I then made the connection between the lack of nerve pain, poking, itching had been alleviated from December 2016 through April 2017 thanks to the pain management doctors prescription. But its almost a year later and I am stll having frequent nerve annoyances. Which has drawn me back to searching for neurological disorders that could be causing these random firings of nerve sensations across my body. It feels like being bite by a mosquito, like my skin is being pricked which makes me want to scratch the site, but there is nothing there. I do not have a rash or even small red dots. Which makes it hard for doctors to do a visual exam and relate it to dermatitis.

It is now March 31st at 2:29 am and I have been awake for two hours due to these nerve impulses. Even with taking my gabapentin its not relieved fully, but is less annoying. Cool showers, Aveeno oatmeal lotion, hydrocordisone cream and allergy pills don’t really help either.

I am thinking I might have Peripheral Neuropathy or Complex Regional Pain Syndrome. Both are related to the Central Nervous System and Peripheral Nervous System.

Though not a a single disease, peripheral neuropathy is nerve damage caused by a number of conditions. Causes of neuropathies include:

Alcoholism. Poor dietary choices made by people with alcoholism can lead to vitamin deficiencies.

Autoimmune diseases. These include Sjogren's syndrome, lupus, rheumatoid arthritis, Guillain-Barre syndrome, chronic inflammatory demyelinating polyneuropathy and necrotizing vasculitis.

Diabetes. More than half the people with diabetes develop some type of neuropathy.

Exposure to poisons. Toxic substances include heavy metals or chemicals.

Medications. Certain medications, especially those used to treat cancer (chemotherapy), can cause peripheral neuropathy.

Infections. These include certain viral or bacterial infections, including Lyme disease, shingles, Epstein-Barr virus, hepatitis C, leprosy, diphtheria and HIV.

Inherited disorders. Disorders such as Charcot-Marie-Tooth disease are hereditary types of neuropathy.

Trauma or pressure on the nerve. Traumas, such as from motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from having a cast or using crutches or repeating a motion such as typing many times.

Tumors. Growths, cancerous (malignant) and noncancerous (benign), can develop on the nerves or press nerves. Also, polyneuropathy can arise as a result of some cancers related to the body's immune response. These are a form of paraneoplastic syndrome.

Vitamin deficiencies. B vitamins — including B-1, B-6 and B-12 — vitamin E and niacin are crucial to nerve health.

Bone marrow disorders. These include abnormal protein in the blood (monoclonal gammopathies), a form of bone cancer (osteosclerotic myeloma), lymphoma and amyloidosis.

Other diseases. These include kidney disease, liver disease, connective tissue disorders and an underactive thyroid (hypothyroidism).

Complex regional pain syndrome occurs in two types, with similar signs and symptoms, but different causes:

Type 1. Also known as reflex sympathetic dystrophy syndrome (RSD), this type occurs after an illness or injury that didn't directly damage the nerves in your affected limb. About 90 percent of people with complex regional pain syndrome have type 1.

Type 2. Once referred to as causalgia, this type has similar symptoms to type 1. But type 2 complex regional pain syndrome follows a distinct nerve injury.

Many cases of complex regional pain syndrome occur after a forceful trauma to an arm or a leg. This can include a crushing injury, fracture or amputation.

Other major and minor traumas — such as surgery, heart attacks, infections and even sprained ankles — can also lead to complex regional pain syndrome.

I feel like Complex Regional Pain Syndrome is more fitting based on my physical symptoms, L4/L5 herniated disc resulting in surgery, along with inflammed sciatic nerves for two years prior to surgery.

Action Plan: Kaiser Urgent Care to explore these two nerve disorders to see what is really going on and how I can get relief and sleep through the night. Yes, my nerve issues primarily happen in the late afternoons and evenings which impacts my ability to sleep through the night despite taking gabapentin which also makes me sleepy.

Sources:

https://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/symptoms-causes/syc-20371151

https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061

#nervepain #insomnia

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invisiblenotbroken · 6 years

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Real Romance: Carbs and Insulin Diabetes and Colitis: Parenting With Chronic Illness: Invisible Illness Serial Podcast

"The reminding part can be absolutely exhausting. When you feel like you're talking to a brick wall (parenting with chronic illness)" -- Vanessa

Disorder Info

Name *Vanessa Jean Locke

Age * 44

What is your disorder? *

Diabetes Type 1, Ulcerative Colitis, Hypo Thyroid, Vitiligo and Sjogrens (eyes)

At what age did your disorder become a daily issue? *

Who were you before your illness became debilitating? *

I was a carefree kid who enjoyed lemonade for fun rather than a hypo treatment. I don’t remember a lot about being without chronic illness as part of my life.

What would you do if you were not dealing with your invisible illness? *

Such an interesting question. If I didn’t have to manage the daily implications of my conditions, pursuits such as university study, full-time employment or highly demanding career options (nursing, teaching) and even enjoying social outings would be feasible. I try to focus on what I can contribute though!

What would you like people to know about your daily life? *

I minimize my pain. You will only know that I’m not feeling well or in pain when I’ve endured many hours or days of painful symptoms. I may speak curtly but I don’t mean to push you away. I feel like despite my best efforts, my body betrays me. Feelings of frustration and despair can be daily. Solitude, quality sleep and resetting my mind will help me be the Vanessa you know again.

What would make living and moving in the world easier for you? *

Beyond a cure, affordability of the continuous glucose monitoring (CGM) system would help a lot. Currently, the system is subsidized to those aged 21 and under (in Australia) but at full cost, $300-400 per month is too high to be sustainable. The system is based on a wearable sensor that can give data about blood sugar trends. Used in conjunction with normal finger prick blood testing, there is potential for added peace of mind and tighter control of blood sugar measures.

Do you have any life hacks? *

When I’m exhausted but need to go out and not look as though I’ve escaped from a morgue, dry shampoo helps me look as though I've washed my hair and B.B. cream is a desert island product—dark circles, rashy and pale to kinda of looking ‘normal’ in 2 minutes. Drinking fruit juice (orange or apple are most reliable) will help a hypo discreetly and quickly without having to shove candy in my mouth. It sounds like fun but believe me, it’s not.

What kind of support do you get from family or friends? *

Every support, emotional and physical, I get from my husband. I call him my angel on Earth. From allowing me to rest while he looks after the house or kids to talking with me in my low times...just being there with no judgment. It’s priceless to me. Outside the immediate family in my house, my expectations are low. People know I ‘have conditions’ but it’s confusing for them. Unless I am visibly sick or they have a specific question, it’s not something often talked about.

How has your invisible illness affected your relationships? *

I’m fortunate to soon be celebrating my 19 year wedding anniversary to the most incredible man who defies logic in his acceptance of me. Our marriage has gone through many ups and downs but at the core is the most thrilling unconditional love. It’s this love that gets us through my times of illness & lethargy.

Is there anything you are afraid to tell even the people closest to you? *

Big question. I’m not sure I’m ready to answer.

What is your best coping mechanism? *

My mind.

What are you the most fearful of and hopeful for in the future? *

Fearful: further autoimmunities corrupting my body. I wonder if it will be an autoimmune condition that claims my life in the end...or will I pass from old age? Hopeful: further technology to stabilize Diabetes. I am hopeful and expectant that none of my disorders have been passed to my children.

What is your favorite swear word?

SHIT!!!

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

My Instagram page and Facebook page

Any questions you think we should add to this list?

What’s the hardest/best lesson your condition has taught you?

Monica's Note: We discussed chronic and clinical depression and if you have ever dealt with this you will know depression is very different from sad. If you are trying to understand clinical depression I would like to introduce you to one of my favorite webcomics Hyperbole and a Half by Allie Brosh In episode 1 and episode 2 she gave THE BEST explanations for what clinical depression feels like. We are a show that discusses medical issues we highly recommend visiting your doctor if you are experiencing symptoms.

#diabetes #Diabetes Type 1 #t1d #insulin dependent #t1dwarrior #sjogern's syndrome #Vitiligo #depression #depression and chronic illness #marriage and chronic illness #romance and chronic illness #chronic illness and love #chronic illness blog #chronic illness #chronic illness podcast #invisible illness #invisible illness blog #invisible disability podcast #invisible illness podcast

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