I have created this blog entry to document the path I have taken to get a diagnosis. I have not started at the beginning, but at the part that is relevant. I have started when the doctors first considered autoimmune disease. The years before that are not relevant as we didn't know what was going on. I created this entry for those that may be going through autoimmune things. Autoimmune diseases are so new to medical science and so little is known. Sharing information can only help. As no person is effected the same way, no one's medical journey is the same either. However, hopefully through this page and my other blog posts, it helps you find your path quicker. I am consistently updating to make sure the most current is available. I have organized it as "Medical" and "Lifestyle."
Dec 2019 - Went to the doctor because my personal trainer informed my I may have fibromyalgia or a different connective tissue problem. Doc ordered blood work. It was positive for SSA-Ro and I was referred to a rheumatologist.
Feb 2020 - Saw the Rheumatologist. She listened to my long list of symptoms and suspects multiple autoimmune diseases. At least one is gland oriented and one is muscular oriented. She so strongly believes the glandular one is Sjogren's that she sent me home with info to familiarize myself with. She also ordered several bouts of bloodwork and an EMG/NCS. Blood was drawn that day to send to an immunology place in CA. They will preform an AVISE CTD test on my blood.
Feb 2020 - Had an EMG and an NCS done. Neurologist said there was no sign of damage to nerves or muscles. Also stated that muscles and nerves were responding appropriately to stimulation.
Feb 2020 - Gave more blood to be done locally. They will check muscle proteins and several other things to get more info on what is going on in my body.
The only thing I seem to be able to do almost 100% consistent is the Pilates, stretching, and breathing. Everything else varies based on pain and fatigue.
- Pilates Reformer - 1 day per week
- Metabolic Conditioning on Anti-Gravity Treadmill - up to 5x per week
- Weights - light with many reps - 2+ times per week
- Stretching and Band work - every day is the goal (happens about 3x per week)
- Steps - work to get 10,000 per day (this varies wildly based on my fatigue and pain)
- Breathing - use apps for now (trainer is working on a regimen for me)
Although not exercise, I receive trigger point massage (with myofacial release) at least once a month. If the pain is too much, my therapist will switch to myofacial release only. The optimal would be to have this every week but my budget will not allow for this. So I make sure to do it at least once a month. This is essential to my well being and I highly recommend massage therapy for pain management and muscle health. It may take a while to find a therapist who can work with you. Just like picking a doctor, you need a good therapist. Take the time to find a good one.
My diet is currently based on my IBS diet. This diet is very specific to me (as all IBS diets should be tailored to you - people have different trigger foods).
VITAMINS & SUPPLEMENTS
I based my vitamins and supplements off of the documentary "Food Matters" and on several books about vitamins and supplements. Although I do not agree with everything in the documentary, the concept that people with health issues need more vitamins and supplements than "normal" people makes total sense. When you are these vitamins and what you take them with make a difference in how they work. I worked with my doctor to get all of my nutritional values (done through blood work) to normal. I did this through a good diet and through using this supplements and vitamins. Some of these supplements are geared toward reducing inflammation and do not have to do with nutrition. I will make them italic so you will know. I spread these over the day, taking some at every meal. Through my research, I optimized the supplements by make sure to take them at the right time and with the right things. I also made sure I had quality stuff. The lab work from the doc helped confirm this. I have a vitamin pack from GNC, and supplements/vitamins from Doterra, Melaleuca, Swanson Vitamins, and CVS. If you want any specific information on the brands, my regimen, the books I used, what type of lab work, or anything else, please leave a comment or email me.
- Women’s Green Multi-Vitamin Pack
- Turmeric & Black Pepper – 2x daily
- Digestive Enzymes – 3x daily
- Vitamin D3 – 2x daily (2,000 IU total)
- Recover AI for inflammation – 2x daily
- Purple Fruit & Veggie Complex – 2x daily
- Fennel – 3x daily (1440mg total)
- Replenex for joints– 3x daily
- Probiotic – 1x daily
- Calcium Magnesium Citrate – 3x daily (1,000mg Calcium Citrate, 160 mg Magnesium, all else see label)
- Flaxseed Oil – 2x daily (2,000 mg total)
- Vitamin C – 3x daily (2,000mg total)
I do not allow anything to mess up this routine. It is essential to helping establish good sleep patterns. Sleep is essential to being healthy and this is more so for those with chronic issues.
- Hygiene (wash, brush teeth, put on PJs, etc.)
- Stretch for 10-20 minutes - I use Sworkit app and do a full body stretch.
- Breathing exercises for 5-10 minutes, depending on strength.
- Ibuprofen - 2 tablets if just for sinus/nasal swelling, 3 tablets if I have that and some body pain, 4 tablets if I have sinus swelling and a lot of body pain
- If I am having allergies, I will take either Mucinex DM or Benedryl, depending on what my symptoms are
- Essential oil rub - I use a blend for pain and a blend for sleep. I use the pain blend where I hurt and the sleep blend for everywhere else. My husband applies it and gently rubs it in.
- I stay in bed and relax at this point. I may go straight to sleep or watch a show with my husband.
ESSENTIAL OILS & OTHER HOMEOPATHIC REMEDIES