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Trying to understand...

Posted , 10 users are following.

shira75032
shira75032

Hi, I'm trying to understand this, hope someone out there can help me:

I understand that the the primary objective in treating Sjogren's is "managing the symptoms". However, if the disease is actually attacking our moisture glands shouldn't we target our efforts on stopping the attack?

If we only treat the appearing symptoms won't the disease just continue to wreak havoc on out system damaging our cells beyond repair?

2 likes, 92 replies

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  • shira75032
    shira75032

    Posted

    Trying the anti-inflammatory diet without milk products, wheat or sugar.

    How long would you all say it takes to begin seeing some results?

    Also, is oatmeal okay?

    • Sunsetstuff
      Sunsetstuff shira75032

      Posted

      Hi! I started a gluten free, dairy free, sugar free, try to eat as much organic as possible - diet 5 years ago. The first 2 1/2 weeks I felt SO BAD but I hung in there, and just before the 3 week mark, I woke up and felt TERRIFIC!!! By one month I had lost 20lbs - which I did not expect, but was a pleasant 'side effect' and I can truly say it made me feel 75% better! I had not yet been diagnosed with Sjogrens- but they said I had Undifferentiated Connective Tissue Disease and I have Hashimotos Thyroiditis. Ultimately diagnosed with SS via biopsy years later. Our errant antibodies get riled up by gluten, dairy and sugar apparently. My antibody count went from 1,097 down to 645 (normal range 1-35) so it does help....
    • Sunsetstuff
      Sunsetstuff shira75032

      Posted

      P.s. I did NOT cheat on this diet for 4 Years. This last year I started cheating here and there and I pay for it! Peripheral limb pain, neck pain, increase of fatigue and some depression. Not worth it. Stick to the diet- there are lots and lots of yummy recipes!!
  • Sunsetstuff
    Sunsetstuff shira75032

    Posted

    Ps.....different people say different things re oatmeal. I buy oatmeal that specifically states gluten-free. I do oatmeal with blueberries, nuts, cinnamon, agave and almond milk. Delicious!!
    • shira75032
      shira75032 Sunsetstuff

      Posted

      Thanks for the info Sunsetstuff, it's amazing you've achieved such encouraging results on this diet!  My main symptoms right now are facial swelling, nasal congestion and parotid gland issues. Hoping it makes a difference and I manage to keep it up!
  • aitarg35939
    aitarg35939 shira75032

    Posted

    Hi y'all, I'm late to this discussion but i wanted to make a couple of points. Sjogren's isn't fun and we should do our best to help our bodies. But Shira it sounded like the diagnosis and mental imagery is causing you an extraordinary amount of stress. I hope that this has abated somewhat for you. In a way i'm glad i was diagnosed pre-internet and have been able to learn at a slower rate.

    Ultimately each of us must find a way to live with it, because that's what we'll be doing for decades. However, there was someone in the group wanting to treat themselves - be treated - with prednisone injections. Let me add my voice tto that of the nurses's: only use prednisone when absolutely necessary for specific needs. Contrary to what American doctors are taught, one can develop anaphylactic reactions to steroids. Once that happens, you can't even use the stuff to treat shingles, much less respiratory emergencies.

    Meanwhile, i have an idiot for a rheumy. He changes hus story from year to year about my disease. Much as i love my new gp, when it comes to getting my evoxac, i preferred my old clinic where they happily prescribed the med for many years based on the quack's original Rx. Our area support group maintains a well-guarded slam book and i can't wait to write something about the guy. In my fall visit, he refuted 90% of what's on the US Sjogren's Foundation website!

    • shira75032
      shira75032 aitarg35939

      Posted

      Hi aitarg, thanks for commenting.

      Yes, the visual image of disease activity is very disturbing, but unfortunately it's very realistic: I just had a sialography of my salivary glands done and they found degeneration of the parotid glands, which is exactly what I feared would eventual happen if the SOURCE of the disease is not treated, only the symptoms.

      My symptoms only began a year ago.

      As far as your rheumy, join the club!

      My rheumy is an idiot as well, and claims there is no treatment for SJS, so "tough luck"!!!

      I decided to leave him, but first emailed him an invitation to a national Sjogren's conference where they discuss all the available treatments for SJS.

      I added the message: "Educate yourself".

    • aitarg35939
      aitarg35939 shira75032

      Posted

      Great email! I can't do the same because when mine was at Harvard with my gp, he was top of the class so she assumes he's great. Eventually I'll find someone better.

      As far as I know, the only salivary glands working in my mouth are the sublinguals and they're not all that hot. Had stones in them in the '90s and am glad now that my own ENT was out so that i saw a young doc. He told me to do a very long course of low-dose antibiotics. I kept reporting no luck. Then i kept feeling pieces of grit in my mouth. Eventually i realized that they were the stones, and eventually they quit xoming out and the pain stopped. Another time i was sent to hospital for specialized tests and had a real Ross Geller "Friends" experience. Highest doc was called in. When even he couldn't provoke saliva from the parotids, he said i was very rare and would i mind if he brought in all the rest of the department to look at my mouth. 20 folks and an entire lemon later they all cheered when saliva finally came from the sublinguals. Nothing on earth can make the parotids work for me.

      Which means finding helpful mouth treatments plus being wise about brushing teeth and gums. We know now that no one should brush their teeth within 20-30 minutes of eating as it's too hard on our teeth. Around here seems everyone in the support group chews Spry gum, which is beneficial when chewed immediately after eating. Brush 30 minutes later and be sure to gently brush gums if you don't have sores, as this helps maintain gum health. Use an appropriate mouthwash for 30-60 seconds. I've used Biotene since the 90s, just saw it in the store one day. About 4 years ago they changed the toothpaste & i had to find something else ... which went out of production. Eventually Biotene reformulated the toothpaste so am back on that. I'm 61 and definitely had dry mouth by age 18. Have only survived since age 24 with gum, can only chew half a piece at a time or my jaws protest. Sory is small enough that i can chew a whole piece. Look up the science behind the ingredients.

      While you've got this image of terrible stuff going on in one body system, perhaps it would help to also envision other systems which are working well. I can tell that your brain and thought processes are working well, which is fantastic. Keep in mind one of the Buddhist teachings (don't think that's the right word):

      It is in our nature to occupy frail bodies

      It is in the nature of our bodies to suffer ailments.

      It is in the nature of our frail bodies to age, and for ailments to increase as we age.

      To age is to experience, and to experience all the physical aspects of aging.

      Experience is all.

      Or words to that effect, as Quakers say. I'm neither Quaker nor Buddhist. I just liked this and it seemed to help many friends who were new to ailments. To put it another way, from a friend who suffers massively from bipolar disorder: get up in the morning, look at oneself in the mirror and smile, then ask what can one do that day to help oneself? For her, it's always what can she do to improve her mental health that day. And it's that day. Thus if it helps you to envision those terrible inner misbehavings, do so. But it seems to me from your posts that those visions are distressing to you. Me, i can face any amount of blood and gore to help someone else (had to take care of my mom in hospital when i was 17) but do not ask me to watch bloid be drawn or to look at any images other than exrays of my insides - I'll just read the reports, thank you.

      Do you have a support group to visit in person sometimes?

    • shira75032
      shira75032 aitarg35939

      Posted

      Thanks for your suggestions and words of support.

      Why is it harsh on the teeth to brush immediately after food?

      There's no support group in my area.

    • morelia100
      morelia100 shira75032

      Posted

      Hi Shira, hope you don't mind me jumping in on this comment. The reason it is better to brush your teeth either before you eat or wait 30 minutes after you have eaten is because of the acidity level in your mouth. Eating food changes the acidity level in your mouth causing the enamel that protects your teeth to become soft. If you brush your teeth while your enamel is soft, you will, over timex brush your protective enamel away. This is particularly a problem with foods high in acid-- like citrus, carbonated drinks, caffeinated drinks, most dairy, sugar, etc. You can do a search for foods high in acid, or just wait the thirty minutes after you eat. I think rinsing with mouthwash is a good alternative and if you really want to get rid of the food, flossing is always a good route. I use an all natural toothpaste so to avoid as many chemicals as I can. I also use a natural mouthwash made from essential oils. Best of luck!
    • aitarg35939
      aitarg35939 shira75032

      Posted

      Hi Shira

      Morelia covered the tooth enamel issue.

      My support group meets 4 times yearly, 20 miles from my house. Some folks come from 50-60 miles away. Maybe you can find some other folks in your area and start a group. The 2 women who run it alternate program mtgs with personal sharing mtgs. I think this is a great way to do it as I've had bad experiences with support groups where there's never anything positive and we all get held hostage, so to speak, by the same 1 or 2 people who monopolize all the time at every mtg.

    • shira75032
      shira75032 aitarg35939

      Posted

      Vey interesting the tooth enamel explanation, thanks guys!

      A support group sounds quite tedious. I actually think I prefer these

      forums. They've been very helpful so far.

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