The more you learn, the more ordinary and in control you will begin to feel.
This will help you to not let your disease control you. ~ Mayo Clinic.
.png "Sjogren's Newsletter August 8, 2022")
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CHRONIC PAIN by Stacey L. MacKinnon
Sleep is something I can’t do
My body’s aching like the flu
So fatigued I can not stand
Fingers numb on every hand
Muscles hurt from inside out
Work today? I highly doubt
Brain fog making me forget
Plans I make are never set
A normal shower hurts my skin
There’s so much more , where to begin
Tummy nauseous everyday
Feel like sh*t in every way
Most my days aren’t very fun
Don’t wish this pain on anyone.
Cry myself to sleep at night
Before the dark turns into light
Praying daily just because
I want my life back like it was
Waking up in so much pain
Sometimes I think Ill go insane
All the meds the drs give
Just so I can kind of live
This is the toughest thing I’ve done
And can’t explain to anyone
Just how hard it is for me
To deal with pain you can not see
But with the faith in God above
And all my friends and families love
I will get through this chronic hell
And maybe one day will feel well.
So if you too have this disease
All I ask you is to please
Don’t give up in anyway
Keep on fighting everyday 💜
Thank you for your poem, Stacey. It is something that many of us can relate to.
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The Oklahoma Sjögren’s Research Clinic is recruiting study volunteers with known or suspected Sjögren’s disease, as well as healthy individuals, to participate in a free, one-time clinical evaluation for Sjögren’s. For more information, contact 405-868-9412, sjogrens@omrf.org or visit www.omrf.org/sjogrens
This is following on from the recent research conducted by Oklahoma Medical Research Foundation which sheds new light on genetic risk factors contributing to Sjögren’s disease.
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Tips for coping with Sjogren's recommended by people with Sjogren's:
Sabrina Marello
Salagen, it activates the salivary glands.
Faye Karageorge
Taking Nordic Naturals Ultimate Omega fish pills helps too. Recently tried my first set of plugs for a couple of tear ducts (so the fluid doesn't drain as fast) and that was a game changer!
Andrea B. Simons
For the ones with very dry feet, Bepanthen cream at night.
Dorothy Welch Aduddell
Serum eye drops are wonderful.
Fran Delise
I use organic coconut oil for my dry eyes Restasis burned my eyes
Peggy Carpenter
Listen to your body !
Denny Rae
use a saline spray every morning up each nostril to treat inflammation in the nasal passages.
Lori Watters
Lots of vitamins and supplements greatly assists my dry mouth symptoms. 'Have great saliva flow.' Magnesium, veggie supplements. Turmeric and collagen.
Lori Bermani
Use an alcohol free mouth wash. I also use it in my hand bag in a spray. Get a small empty spray bottle. Many mouth washes have alcohol in them. This really works to prevent dry mouth.
Jamie Wysel Krug
Topical CBD (in coconut oil) does wonders for my joints and doesn’t mess with my incredibly sensitive skin.
Connie Blosser - Emry
Cindy Baxter
Emma Hermann
LDN. Lifesaver. it's low dose naltrexone. Naltrexone is used off label in very low doses to treat inflammation/pain. It had me feeling cured after 20+ years of disabling pain...but stopped working for a bit. I think it was because of menopausal symptoms were getting the best of me. Now...it started working again...and my pain is reduced by 65-85%. I started it in Oct. 2019. Here are some books about LDN
Gina Guzman
I take it Day by Day. I pray and push through. Exercise, Read and watch good shows. Lots of water healthy eating. Don’t drink alcohol.
Mimi Dickens
I found using a water pick extremely useful. It massages my gums, cleans, and adds some much needed wet to my mouth.
Robin Barry
Try not to overdo, learn how to say no. Both are really hard for me.
Renee Austin
Add a plain electrolyte product to water and sip throughout the day. I use a product called E-lyte by Body Bio and It keeps my mouth and throat moist and it's been a lifesaver. It's a clear liquid with no chemicals, flavorings. or preservatives, just electrolytes. My doctor recommended it.
Petra OttenI use NasuMel it helps me well
Josie Miliano-Parisi
Eating gluten free helps me.
Julie Maria James
Sleep, listen to your body, take naps
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MEDICATIONS USED IN SJOGREN'S
SALAGEN: Generic Name: pilocarpine hydrochloride
Brand Name: Salagen
Drug Class: Salivary Stimulants
What is Salagen and how is it used?
Salagen (pilocarpine hydrochloride) is a cholinergic agonist that increases saliva secretion in the mouth used in the treatment of dry mouth. Salagen is available in generic form.
What are side effects of Salagen?
Common side effects of Salagen include:
- changes in vision,
- increased sweating,
- dizziness,
- weakness,
- headache,
- runny nose,
- nausea,
- diarrhea,
- redness of the face and neck (flushing),
- chills, or
- increased or frequent urge to urinate.
Salagen may cause an increase in tears. This can be helpful if you have dry eyes (such as with Sjogren's syndrome).
THANKS TO RXLIST where you can find side effects and other information on this drug.
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Health Benefits of Potassium
When we have enough potassium in our diet it can have anti-inflammatory and pain-relieving effects. This may benefit the management of muscle cramps, aches, and stiffness. As part of a balanced diet, the mineral potassium can help reduce inflammation and pain.
Potassium in the diet
You can change your diet to increase potassium intake.
Some healthy food choices rich in potassium include:
- cantaloupe
- potatoes
- bananas
- orange juice
- raw spinach
- artichokes
- asparagus
- green beans
Recommended Daily Allowance 3500 grams per day
What are the signs of low potassium?
The main signs of low potassium are:
- fatigue
- weakness
- digestive problems
- abnormal heart rhythm
- difficulty breathing
- numbness
- frequent urination
- high blood pressure
- Constipation
- Muscle weakness or spasms
- Tingling or numbness
Information compiled from Healthline and MedlinePlus
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Soft and easy to eat as well as healthy with an easy to make, no-cook, sauce. Here is one of our go-to meals that is gluten-free and would be on an anti-inflammatory diet like MIND or the Mediterranean diet. Of course with all recipes you may need to swap some ingredients to what you are able to eat.
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This is the most popular food processor on Amazon for those looking for help with their food preparation.
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RECENT RESEARCH COMPLETED
1. The interplay between cognition, depression, anxiety, and sleep in primary Sjogren’s syndrome patients. This study concluded: Cognitive complaints and fatigue concern a large proportion of pSS patients and represent complex clinical situations. Here, we found that global memory, executive functioning and attentional resources are objectively impaired in pSS patients with cognitive complaints. However, their tight interplay with depression and anxiety should be considered by physicians in daily practice and may require psychological or even psychiatric management. Screening for sleep disorders could be helpful in patients with fatigue or cognitive complaints. Further studies are required to validate our proposals for screening and management and should also include extensive cognitive evaluation, and maybe biomarkers or specific brain imaging (measuring brain functional connectivity and microstructural changes).
2. The difference in pathogenic bacteria between chronic rhinosinusitis in patients with and without Sjogren’s syndrome: a retrospective case–control study. This study found that P. aeruginosa is a major pathogen in SS-Chronic rhinosinusitis (CRS) patients. In addition, physicians should be aware of potential Fusobacterium and antibiotic-resistant bacterial infection in patients with SS-CRS. Previous studies have found that patients with autoimmune diseases such as rheumatoid arthritis and systemic lupus erythematosus are predisposed to CRS. SS can cause upper respiratory tract infection and local sinus inflammation more frequently, and predisposes patients to CRS.
3. Scleroderma-specific autoantibodies study.
This study, done in Greece at the National and Kapodistrian University of Athens, was on 216 patients who were referred for evaluation of possible Sjogren's Syndrome between 2017 and 2021.
Autoantibodies specific to scleroderma are frequently found in patients with dryness complaints and at strong but not medium titers are independently associated with minor salivary gland biopsy positivity. This data shows a useful role of SSc antibody testing in the diagnostic work-up and possibly in the classification criteria for SS. Read the full study here.
Scleroderma (sklair-oh-DUR-muh), is an autoimmune disease, also known as systemic sclerosis, is a group of rare diseases that involve the hardening and tightening of the skin. It may also cause problems in the blood vessels, internal organs and digestive tract.
Scleroderma is often categorized as "limited" or "diffuse," which refers only to the degree of skin involvement. Both types can involve any of the other vascular or organ problems. Localized scleroderma, also known as morphea, affects only the skin. Mayo Clinic
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Giving Us Hope: While we may not understand the complexities of Sjogren's research it is comforting to know that it is being done. Here are a few current studies:
Hydroxychloroquine Blood Levels in Primary Sjögren Syndrome Patients: Analyze patients with pSS receiving HCQ as part of their treatment: blood levels of HCQ.
Dental and Periodontal Status of Patients With Sjögren's Syndrome: assessing the prevalence of dental wear and gingival recession in patients with Sjögren's syndrome in France.
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A list of medical clinics that treat Sjogren's Syndrome is here: If you have a medical clinic that you would like to add please email me at contact@sjogrenssyndromeinfo.com
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Recognizing World Sjögren’s Day July 23rd
In recognition of World Sjögren’s Day:
- Sjögren europe did a dry eye education campaign.
- Sjögren's Society Of Canada did a Facebook, Twitter, and Instagram tips campaign.
- Sjögren’s Foundation asked members to Share their story.
- Venus Williams, who has been diagnosed with SS, sent out a tweet saying "For those with chronic illnesses, this day is for you".
- Healio Rheumatology compiled its top five stories featuring Sjögren’s Syndrome from the past year. These stories cover current and emerging treatments, outcome measures and the challenges in making a diagnosis.
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Fatigue in Sjogren's Syndrome this excellent and informative campaign, from Sjogren europe, will be posted on my Facebook profile Lee Good, once a week.
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If you would like to receive an email reminder about this newsletter, which comes out twice a month, please go to our website Sjogren's Syndrome Info and add your email address.
AFFILIATE DISCLOSURE: I'm an affiliate for some products and as such receive a small percentage of the profits, at no extra cost to the purchaser. This is how I help fund the work I do for this newsletter. Thank you for any purchases you make.
Please keep in mind I am not a medical professional, but a person with SS with a background in research, and the information in this newsletter does not replace the advice of a doctor.
Sincerely searching for better health, Lee Good contact@sjogrenssyndromeinfo.com |
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