I have lived with MCTD for +/- 8 years. I think you will find that living with a connective tissue disorder will be one of adapting and adjusting over time, an ongoing evolution, as opposed to a specific enlightening event of clarity.
Everyone with a connective tissue disorder will have his/her own set of annoying symptoms. How I experience MCTD will be different from someone else, depending on the type of tissue most involved.
Truth be told, medical science has relatively little to offer to tame an immune system on self-attack. There is always concern in overly suppressing one’s immune system and the sequela. There is much that remains unknown as to the intricacies of the immune system. Approach treatment decisions with the utmost of
care and research/study, especially concerning newer biological.
I am a big advocate of self-care. Perhaps that is due to my background as a physical therapist and distance runner. Never replace self-care with a reliance on pharmaceuticals and medications.
1. Read up on the principles of an anti-inflammation diet. There is sound reasoning in nutrition and food choices that calm inflammation. I shop at Whole Foods, only. I avoid processed foods, high fructose corn syrup, avoid excess sugars and sugar substitutes, and purchase organic. I keep to a vegetarian diet out of personal choice. That doesn’t mean that I do not partake in foods and tastes that I enjoy (I do). I love ice cream. But I eat ice cream in moderation. I am not someone who finds comfort in food, I am not a “foodie.” My intestinal history (ileostomy) and adhesions also affect the foods that I can consume, which does not impact most other individuals with widespread inflammation. Bottom Line: Begin to read up on food/diet following an anti-inflammation program. Dr. Weil is a well-known authored physician on the subject.
2. Keep moving
Yes, it hurts to move when connective tissue and bone articulations are inflammed. But gentle movement is the prescript
ion needed. Synovial fluid that lubricates joint surfaces is exchanged and replenished through regular range of motion. Constriction and gradual shortening of connective tissue is best thwarted by slow, sustained stretching. Yoga. Pilates. Look into community resources . . . YMCA water/pool arthritis program or the Silver Sneakers senior programs. I consider yoga and stretching to be a regular part of my day, along with brushing my teeth. I walk religiously, despite avascular necrosis of my hips. Keep moving. Keep moving. I will keep moving until I simply cannot.
3. Purchase a new mattress and bedding
A memory foam mattress/Tempurpedic has been ideal for me. I also purchased an articulating frame that provides for the head/foot sections of the bed to raise/lower. The Comfort Number mattress series also has good ratings. You want a mattress that unweights sensitive joints and pressure points. Take time and lie on several mattresses as you shop a mattress retail store. I spent a lot of hours on my bed, as sitting is limited for me. A quality mattress has added to my comfort.
Keep to a light-weight down quilt or light-weight comforter at nighttime. Avoid heavy or bulky blankets and sheets that weigh heavily on your body.
4. Keep it simple with personal care products
I subscribe to personal care products (shampoo, soap, toothpaste, etc) that are organic with a minimum of chemical additives. I avoid all products with parabens and sodium laurel sulfate and avoid all plastic with BPA. Glycerin soaps are a pure choice without skin irritation. Major brands for soaps and lotions: Cephalin, Keihl’s, and Johnson & Johnson’s Basis brands are minimally processed with few additives. Your skin is the largest organ of the body. Treat your skin and nails with attentive care and avoid highly processed skin products (several skin product chemicals absorbed by the skin are known to be endocrine disrupting).
4. Dental/oral care
Dental and oral care of teeth and gums is essential. People with poor dental care and gingivitis are prone to heart valve disorders and generalized health deterioration. For anyone with connective tissue inflammation, extra attention to dental care is a must. I have dental hygienist cleanings 4 x a year (insurance pays for 2 visits per year, I private pay for two visits). Attent to any dental work (fillings, root exposure) in a timely manner. Do not delay dental work needs. Floss daily. Use a high quality toothpaste with fluoride (there are prescript
ion toothpaste and dental rinses, ask your provider). Invest in a Braun Oral-B or ultrasonic electric toothbrush. Rinse with an anti-tartar rinse or fluoride rinses.
OK . . . That’s a full starting point of ideas to consider and integrate into your daily routine. I have been disappointed, overall, by medicine and medical care. I have had to reach deep within myself to find a personal compass. Each person’s pathway will be unique. Begin to explore avenues of self-care that bring value to you.
Pituitary failure, wide-spread endocrine dysfunction
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
Post Edited ((Seashell)) : 10/16/2018 12:02:22 PM (GMT-6)