Natural things that help?

[trc1962]

Now that we have moved past MS I still can't get a positive sjogren's diagnosis. I qualify in many ways but it is not "absolutely diagnostic." My rheumy still contends that sjogren's is a disease of dryness not neuropathy. I have been thinking about what I can do to help me in every way possible besides the prednisone and cellcept (40 mg and 1000mg right now). Here are some things I have come up with and please add what has helped you:

-I will shoot for 9 hours of sleep at night and hope for 8.
-I will avoid stress when I can and take extra time to distress (walks in nature, good music)
-I will continue to eat a low inflammatory balanced diet.
-I avoid caffeine, don't smoke, drink and I exercise regularly (except right now that is 20 minutes in the pool being careful) and I will continue that.
-I wont teach full time this year but .8 - 3 day weekend.
-I will try to get a diagnosis on my thyroid issues; dr, says he can't evaluate it on prednisone at all (TSH been 10 or over since last August and no treatment because my labs are still within range). Do any of you have high TSH that your dr. can monitor while on pred?
-Look into massage or reflexology just out of interest. Anne Romney feels like it gave her life back and it can't hurt to try (if my insurance covers).

Please add what has helped you as everyone has probably found some things that really help them - please share!!

[Joe S.]

1. Do not panic as it increases pain and anxiety
2. Remember to breath through the pain
3. Meditate i am, calm
4. Supplements cucumin, boswelia, high active tart cherry, inositol
5. Learn to manage your spoons, Spoon Theory

there are more but these are the basics that I do.

[Navigator]

If I were you I would do the following.  (I am not a doctor remember).

Try to get the doctor to agree that you can taper off the prednisone and have your thyroid completely checked out.

Have your Vitamin D levels checked. Most of us are very low and that can make symptoms worse.  Even if you are in the normal zone...which some think is 35 IU take supplements (up to 4000-5000 a day is fine) and try to get it higher. Above 50 is my goal. My doctor likes 65.  If you are low the treatment dose is often 50,000 IU once or twice a week.

Add Fish oil to your list of things that are natural to take or eat Salmon or other high Omega 3 fish at least once if not twice a week.

Do things you love to do, that gets you out with people and adds joy to your life.  Volunteer if you want...don?t hide in you house.

[ktfabian]

Hi, I think it's great that you're looking for natural ways to treat your (most likely) Sjogren's. First thing to remember is that it can still take at least five years to get a positive diagnosis.

Also, unless you absolutely love the doctor you're seeing or are bound to him by an HMO or other health insurance reasons, look for a doctor who understands that there is MUCH more to Sjogren's than dryness. I'm not saying that to scare you or anything, many of these other symptoms are very manageable with the right doctor and the right treatment. But starting out with a doctor who thinks of this as only a disease of dryness probably doesn't have a good handle on Sjogren's.

I, like the others who've already posted, take supplements. I take turmeric ( which I believe is where curcumin comes from), Theratears vitamins, which have fish oil in them, Magnesium Glutamate, Glucosamine Sulfate, and B 12, a B Complex vitamin and a standard  multivitamin because I have trouble eating some foods and know I don't get everything my body needs on a daily basis. I also take calcium with D3 and a prescription vitamin D, 50,000 IU once a week because I've vitamin D deficient.

All of these have been recommended by my Rheumatologist or PCP. We're talking about starting a Prebiotic because I have trouble with gastroparesis. My Rheumatologist, who is a Sjogren's specialist, also recommended an all natural Sleep Aid called Calmes Forte. I wouldn't start any of these things without checking with a doctor you trust.

Breathing through the pain is really good advice. It's sometimes hard to remember when the pain gets bad, but the  more you   practice, the easier it should get. If you can't meditate (I, for one, have never gotten the hang of it) try finding a quiet place and a piece of music that help you to relax and breath in time to the music. I've actually found I use the breathing I learned during child birth classes much more than I ever did during either of my boys' births, which were both emergency c-sections, but at least it comes in handy now.

And try not to lose touch with friends. At times, this disease can make us feel very alone. Never be afraid to reach out to the people here, and help those closest to you understand what you're going through so that they can help you through  your tougher times. Get out as much as you can. My husband and I recently moved into a senior apartment building, and if anyone would have ever told me how good I would feel after a night of bingo with friends I've made in the building, I would have laughed. But now I look forward to Friday nights and the chance to just take the elevator down to the Community Room and share a few hours with friends. I even win sometimes.

I wish you the very best and hope we can come up with enough suggestions to make your transition into Sjogren's a bit easier,
Tracy

[Sharon]

I can't tolerate most meds.
I agree with your ideas as well as those of the others and add:

Vit. D3 in liquid gel form (more absorbable) up to 10,000 IU daily (better daily than higher once weekly...)- has helped my musle and joint pains and neuro symptoms, perhaps improved energy. (Read up on the Coimbra Protocol for Vit. D- amazing, hopeful info!)

Curcumin- high doses- helps with pain and inflammation in general

Ubiquinol 100mg-200mg (depends how dry you are)- dramatically increases saliva flow, perhaps improves energy as well. Really improved my quality of life.

Not "natural" but really helpful in calming the immune system when needed, especially when a flare is coming on: Lorivan

Good luck!

[trc1962]

I take both liquid B12 (levels in the 700's) and liquid D3 as well as extra calcium right now. I also take krill oil (every other day as it makes me bruise). As I have been dealing with histamine issues (they really are real and I believe mine is from my thyroid being out of whack) and I have done some quercetin (dr. says fine) and I have lessened high histamine foods in my diet. I sure appreciate all the suggestions, especially with panic/anxiety as I have felt worried lately about the future. The biggest issue right now - besides the nerve pain - is the inability to focus and feel centered, I always feel shaky, nervous and just "out there." Rheummy's changes today are doubling the cellcept to 2000 and trying to add lyrica (if my insurance will cover). I don't have a lot of choices for rheummy's here and so I am going to have to stick with this guy, however, he would support me visiting a sjogren's specialist in Seattle (5hours away) and follow whatever was directed I would think. Thanks so much for the suggestions, they are really good!

[eija]

Remember, that even with natural ailments you need to check carefully that they sit well with your medication - and you personally.

E.g. Tumeric/Curcumin that was suggested in this thread and which I know many people on this board use successfully, has some counter effects with certain medication like blood thinners, diabetes medication and stomach medication. Try googling "Don't EVER Use Turmeric If You're on any of the Following Medications" (there are ads on the page so I can't link it here)

Natural remedies can be a good thing but they can also be even lethal if not used right and carefully.

Hoping you'll find help soon!

[trc1962]

Tumeric does not work well for me at all and so I don't use it. I run everything through my dr. and rheumy before it enters my mouth as so much can mess with the ability to absorb medications. I heard from the neuro who looked at all my MRI's for the past 12 years and he says the original little white areas on my brain MRI from 2003 look very much like gluten sensitivity areas and he asked I just totally go over my diet again. I did and the only thing I could come up with was that I have been eating GF oats from Traders Joe's for breakfast a lot as I love them and they offer good fiber. My mom is visiting and is celiac and oats for her (even GF and milled in GF plant) cause her digestive issues because some strains emit a protein her body doesn't like. Therefore, I will try a few days not eating them and see if it helps. On a small plus note, my Primary emailed to remind me that low doses of clonazepam (1/2 mg) did help with neuropathic pain in a small flare in 2011. I had some at home and took a 1/2 mg dose and it did give some relief and seemed to "slow my brain down" as it just gets racing. Thankful for small things and ready for bed.

[ccaplin]

Add Fish oil to your list of things that are natural to take or eat Salmon or other high Omega 3 fish at least once if not twice a week.

I agree that trying a high-quality Omega-3 fish oil supplement is an option, but I would caution against eating salmon. Most salmon is farmed and is high in the inflammatory GLA, as well as many toxins. Fresh wild salmon is much less common, so canned salmon or other types of fish high in omega-3s are better choices. If you like (or don't mind) anchovies or sardines, those are high in omega-3.

I've also been trying borage oil. I read a book a couple months ago that talked about the inflammatory process and inflammatory disease, which is where I got a lot of the info about EFAs. American diets are high in GLA omega-6 EFAs, which the author thinks is the origin of our high levels of inflammatory disease and allergies. He has dietary recommendations for reducing GLA production and consumption (our bodies also produce it, just what we needed), but the easiest for me to follow is taking borage oil.

[trc1962]

I feel fortunate that my youngest son has spent his last few Summers in Juneau Alaska and he supplies us with all the fresh pacific wild caught salmon we can eat - I eat it twice a week and love it. I have also done Krill oil which seems like a good thing. Never have used borage oil, but will read up on it.

[SjoDry]

Hi trc1962

You didn't mention anything about your diet and whether you might be following a special food plan? I will tell you that I have just (since May) made some drastic changes to the AutoImmune Paleo food plan and have eliminated some other things, while adding supplements. I have had some very big changes for the better and wish that I had done this a long time ago.

Everyone is different and what works for me may not work for you...changing my food plan was the only thing that I had not tried.

Best of luck to you.

SjoDry

[trc1962]

I actually started eating a low histamine diet in March as I had developed so much skin inflammation and of all things, oily hair. I started realizing that if I took and antihistamine my symptoms improved, so I started trying to eat a whole lot less histamine. As a plus, my ear ringing actually went away for awhile. I would be interested in what your diet entails, but I hesitate to follow the paleo diet because it cuts so much out. By following a lower histamine diet and wearing a super strong sun screen (I developed sun sensitivity only on my face) I actually looked and felt pretty good. My TSH and pituitary have been elevated for over a year but not treated because the endo said the prednisone won't allow a proper reading. However, he has finally decided to look at a blood draw and I am relieved as a high TSH could be making my situation. Please do share your diet though as I am open to anything!