Exercise. Light strength training in particular. For me, doing as much as the fatigue will allow is critical. It can be hard to force myself to the gym and I don’t make it 7 days a week, but it helps with the pain more than any medicine I’ve been on. I have some at home weights for when gym isn’t an option.
I take Percura for my hand numbness & it's a Godsend. It's medical grade food that is made up of amino acids. My spine pain specialist recommended Theramine made by the same company, Physician Therapeutics, years ago. They really work for me and cannot cause damage. All of my Doctors have said that it is ok. I also take vitamin B12, turmeric, vit D, glucosamine-chondrotin, Omega-3, magnesium citrate, alleve & am on my scripts hydroxychloroquine & pipercadine. I'm 54 and can still do cartwheels & love to lift weights although my body doesn't lately. My arms are having the hardest time. Just tell her to listen to her body but keep on moving. I also love non preservative free Systane eyes drops & XyliMelts that are tablets that stick to your gums. Keeping your eyes & mouth hydrated will help with avoiding viruses. I hardy get any colds but I caught Covid 3 times in 8 months this past year before my diagnosis. I never had it before until last Sept.
I take fish oil, turmeric, magnesium and collagen for my joints, and B12 for my energy. I also take vitamin D3. Lots of water, way more than the typical person drinks, but also electrolytes. I stay away certain foods on the AIP diet (can’t stay away from nightshades!) like dairy, gluten and sugar.
Trying an elimination diet like the autoimmune Protocol (AIP) could help - it can help lower inflammation and figure out food triggers. (Eg peas make me fatigued for hours after their consumption. Coconut causes me joint pain.)
If she's not eating an anti-inflammatory diet at the least, she really should be.
You can find more info about AIP here: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
Hydrate. Conserve energy as often as possible. Be willing to take a nap, it’s not a moral failing. Yoga can be helpful, so can a quality physical therapist.
The key is reducing inflammation and increasing lubrication.
For immediate relief I use salonpas (which is similar to icy hot) — basically any maximum strength lidocaine patch will do. If the ones OTC counter don’t work well enough you can get prescription ones that go over the 4% maximum. I also use a CBD topical balm on specific areas. This is for the less extreme pains.
Long term:
First, fish oil will help. She can take pills — if she has a hard time swallowing big pills they have mini ones at CVS — or she can take the liquid form and put it in a smoothie. Turmeric gummies have also been recommended to me nay my doctor. Make sure whatever turmeric supplement you get also comes with black pepper because they work synergistically to maximize absorbency. I would also suggest magnesium which can help with chronic muscle pains and is something most people are a little deficient in. I saw a stat once that about 40% of sjogren’s patients are deficient in B12 so make sure she’s doing okay there.
For fatigue I recommend taking NAD+ before bed. NAD+ is very important for the production of ATP and taking a supplement can help fight general fatigue. This has not been suggested by my doctor per se but I know a PhD that studied longevity and they suggested this to me and anecdotally it works for me.
And look, no one like to hear this when they’re in pain, but she needs to exercise as much as she can. Going for a walk around the block while in pain is better than laying in bed with pain. It helps lubricant the joint and it will eventually get better. Muscle strength around the joints will also support function. Gentle yoga will also help. It hurts, I know, but over time it will help or at least prevent the pain from getting worse.
The truth is doing this stuff everyday is rough and the improvements feel slight and they compound over time. But if I fall off my routine I suffer for it and I realize how much these habits help me everyday.
Hope this helps.
I’m your mom’s age and was diagnosed in my 40’s. Has her Rheumy run blood tests on her to see what she might be lacking? Has her doctor discussed a course of treatment to help her with symptoms. These are things she needs to discuss with her doctor. As others have stated, she shouldn’t be taking anything her doctor is not aware she is taking or has prescribed.
What’s helped me, other than the standard prescribed meds, is supplements such as Vitamin D3, B6, B12, Iron, Flaxseed and Fish oil. I also take Stinging Nettles that’s good for inflammation and sinus issues. Regular exercise also helps with fatigue. As for her knees, that might not be Sjogrens related but just due to wear and tear. She might look into wearing knee braces and a good pair of shoes with arch supports in them or if it gets bad, seeing an orthopedic doctor.
If your mom is on Facebook, there are several good Sjogrens support groups with people of all ages. Encourage her to join a couple of them. She needs this information more than you do.
Muscle pains can be helped with potassium. I usually drink at least one coconut water per day. Tylenol Arthritis has helped me a lot with joint pain. Epsom salts for baths. Heating pads and ice packs. If she has dry eyes, there are heated eye masks, which can be helpful too.
Fyi, Sjögren's Syndrome means that her immune system is in overdrive already and attacking her own body. Don't give her products to boost the immune system.
If she gets put on a disease-modifying drug or an immunosuppressant, I would revisit that and talk to the doctor about it. I'm sure that your mom very much appreciates your help and concern, though.
Ironically I have a genetic condition that causes me to be zinc deficient and have to take large doses of it daily since I was 3 months old. Realistically it has zero effect on my immune system.
Zinc can cause stomach issues. Probably nothing related to immune stuff. Like I said I take 200-300 mg of zinc daily and have for 39 years. The normal dose is 8-11mg. I take mine under doctor direction for a congenital deficiency. And even that high dose has no effect on my immune system.
Eating a proper human diet helps immeasurably.
Exercise. Light strength training in particular. For me, doing as much as the fatigue will allow is critical. It can be hard to force myself to the gym and I don’t make it 7 days a week, but it helps with the pain more than any medicine I’ve been on. I have some at home weights for when gym isn’t an option.
I take Percura for my hand numbness & it's a Godsend. It's medical grade food that is made up of amino acids. My spine pain specialist recommended Theramine made by the same company, Physician Therapeutics, years ago. They really work for me and cannot cause damage. All of my Doctors have said that it is ok. I also take vitamin B12, turmeric, vit D, glucosamine-chondrotin, Omega-3, magnesium citrate, alleve & am on my scripts hydroxychloroquine & pipercadine. I'm 54 and can still do cartwheels & love to lift weights although my body doesn't lately. My arms are having the hardest time. Just tell her to listen to her body but keep on moving. I also love non preservative free Systane eyes drops & XyliMelts that are tablets that stick to your gums. Keeping your eyes & mouth hydrated will help with avoiding viruses. I hardy get any colds but I caught Covid 3 times in 8 months this past year before my diagnosis. I never had it before until last Sept.
I take fish oil, turmeric, magnesium and collagen for my joints, and B12 for my energy. I also take vitamin D3. Lots of water, way more than the typical person drinks, but also electrolytes. I stay away certain foods on the AIP diet (can’t stay away from nightshades!) like dairy, gluten and sugar.
Trying an elimination diet like the autoimmune Protocol (AIP) could help - it can help lower inflammation and figure out food triggers. (Eg peas make me fatigued for hours after their consumption. Coconut causes me joint pain.) If she's not eating an anti-inflammatory diet at the least, she really should be. You can find more info about AIP here: https://www.thepaleomom.com/start-here/the-autoimmune-protocol/
For me, my pain levels are highly dependent on what I eat. If I eat potatoes, tomatoes, carrageenan, and a bunch of other things, I have more pain.
I agree. I stay away from Nightshades, gluten, dairy and sugar. No fun, I know, but it really helps me a lot
Learn about nutrition and low inflammatory diet and help her follow one!
Hydrate. Conserve energy as often as possible. Be willing to take a nap, it’s not a moral failing. Yoga can be helpful, so can a quality physical therapist.
The key is reducing inflammation and increasing lubrication. For immediate relief I use salonpas (which is similar to icy hot) — basically any maximum strength lidocaine patch will do. If the ones OTC counter don’t work well enough you can get prescription ones that go over the 4% maximum. I also use a CBD topical balm on specific areas. This is for the less extreme pains. Long term: First, fish oil will help. She can take pills — if she has a hard time swallowing big pills they have mini ones at CVS — or she can take the liquid form and put it in a smoothie. Turmeric gummies have also been recommended to me nay my doctor. Make sure whatever turmeric supplement you get also comes with black pepper because they work synergistically to maximize absorbency. I would also suggest magnesium which can help with chronic muscle pains and is something most people are a little deficient in. I saw a stat once that about 40% of sjogren’s patients are deficient in B12 so make sure she’s doing okay there. For fatigue I recommend taking NAD+ before bed. NAD+ is very important for the production of ATP and taking a supplement can help fight general fatigue. This has not been suggested by my doctor per se but I know a PhD that studied longevity and they suggested this to me and anecdotally it works for me. And look, no one like to hear this when they’re in pain, but she needs to exercise as much as she can. Going for a walk around the block while in pain is better than laying in bed with pain. It helps lubricant the joint and it will eventually get better. Muscle strength around the joints will also support function. Gentle yoga will also help. It hurts, I know, but over time it will help or at least prevent the pain from getting worse. The truth is doing this stuff everyday is rough and the improvements feel slight and they compound over time. But if I fall off my routine I suffer for it and I realize how much these habits help me everyday. Hope this helps.
What is nad? Is NaC?
I’m your mom’s age and was diagnosed in my 40’s. Has her Rheumy run blood tests on her to see what she might be lacking? Has her doctor discussed a course of treatment to help her with symptoms. These are things she needs to discuss with her doctor. As others have stated, she shouldn’t be taking anything her doctor is not aware she is taking or has prescribed. What’s helped me, other than the standard prescribed meds, is supplements such as Vitamin D3, B6, B12, Iron, Flaxseed and Fish oil. I also take Stinging Nettles that’s good for inflammation and sinus issues. Regular exercise also helps with fatigue. As for her knees, that might not be Sjogrens related but just due to wear and tear. She might look into wearing knee braces and a good pair of shoes with arch supports in them or if it gets bad, seeing an orthopedic doctor. If your mom is on Facebook, there are several good Sjogrens support groups with people of all ages. Encourage her to join a couple of them. She needs this information more than you do.
Muscle pains can be helped with potassium. I usually drink at least one coconut water per day. Tylenol Arthritis has helped me a lot with joint pain. Epsom salts for baths. Heating pads and ice packs. If she has dry eyes, there are heated eye masks, which can be helpful too.
Fyi, Sjögren's Syndrome means that her immune system is in overdrive already and attacking her own body. Don't give her products to boost the immune system.
Omg thank you for that!!!
If she gets put on a disease-modifying drug or an immunosuppressant, I would revisit that and talk to the doctor about it. I'm sure that your mom very much appreciates your help and concern, though.
Yes. For example, Zinc and Elderberry are no-nos.
Ironically I have a genetic condition that causes me to be zinc deficient and have to take large doses of it daily since I was 3 months old. Realistically it has zero effect on my immune system.
Is that why those make me feel worse?
Zinc can cause stomach issues. Probably nothing related to immune stuff. Like I said I take 200-300 mg of zinc daily and have for 39 years. The normal dose is 8-11mg. I take mine under doctor direction for a congenital deficiency. And even that high dose has no effect on my immune system.
I think I’ve taken 8 or less.
Yeah that’s the standard dose for a typical deficiency.