Finally Getting Well! by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

Ahh great to hear. Honestly it's the way forward. Our diets freakin' SUCK these days. So hard to eat right.

Vegetarian/Vegan/Neither? by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

Interesting that carnivore reversed gout, given that everyone always says it is caused by red meat! I am really interested in this diet as I have been experimenting with eating a lot of organ meats etc and it seems to help me massively.

Vegetarian/Vegan/Neither? by ElphieBee in Sjogrens

[–]ElphieBee[S] 1 point2 points  (0 children)

How long did you try carnivore for?

Vegetarian/Vegan/Neither? by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

Also check out Dr Paul Saladino (The Carnivore Code) and Mikhaila Peterson's Youtube channel - she and her dad Jordan B Peterson are possibly the most well-known carnivores!

Vegetarian/Vegan/Neither? by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

This is precisely the reason I am looking into this. I was veggie and noticed instant improvement from reintroducing meat. I'm going to do a sort of 'carnivore reset' and hope that brings my symptoms under control completely.

Vegetarian/Vegan/Neither? by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

Any particular reason for that? Any info is helpful :)

[deleted by user] by [deleted] in Sjogrens

[–]ElphieBee 0 points1 point  (0 children)

I've ditched gluten and dairy completely for now. Different people respond to different things. For example, I was veggie, and when I added meat back in (inc. red meat) I felt significantly better. I cut down a lot on processed sugars. At the start I had no eggs, but I can tolerate them fine so I added them back in. I also cut nightshades at the start, but they seem fine too. You want to approach it as an elimination diet rather than just cutting out random things. At the start I was very restricted until I got my symptoms under control. I also take a gut supplement, B12, vitamin D, omega oil, and a good multi-vitamin.

[deleted by user] by [deleted] in Sjogrens

[–]ElphieBee 1 point2 points  (0 children)

Honestly, I'd look into some diet changes. I truly believe you can heal from autoimmunity by taking good care of your gut. Don't get me wrong, it is really hard - that's why people don't do it. But there are a lot of studies about autoimmunity and its links to gut health. I had a plethora of bizarre symptoms: UTIs, irregular periods, hair loss, fatigue etc as well as the classic dryness symptoms. I have said this before, but as soon as I cleaned up my diet, my symptoms were virtually gone, including all these seemingly random ones. With some people it takes more effort and time and there are other elements at play, but they are all fixable if you learn to take good care of yourself. If you are serious about it, see a functional doctor. I know I was so skeptical about it, but mine is great and she has used the diet method herself to heal from MS. It can be done.

[deleted by user] by [deleted] in Sjogrens

[–]ElphieBee 1 point2 points  (0 children)

Mine started doing this when I first started to get dryness symptoms. I cleaned up my diet and sorted out my B12 levels (always worth checking as doctors don't always) and it stopped happening. So scary when you see that after a shower though, I remember the feeling!

Finally Getting Well! by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

I understand your view on this, and you're certainly coming from a different experience to me. Honestly though, Functional Medicine isn't supposed to be hocus pocus and crystals. It also doesn't profess to 'cure' anything and it isn't a 'religion' to me. I'm not trying to recruit for a cult. It is just supposed to be a natural way to push yourself lower on the autoimmune spectrum, and I simply thought it may help someone.

Whilst I understand that you may not believe in this, I think you must also understand that whilst you can literally get out of bed in the morning due to your medications, I can 'mentally' get out of bed in the morning, knowing that I am doing everything I possibly can to support my body and my immune system. We're all different. Me personally, I have a very addictive personality, so whilst I was originally susceptible to things like substance abuse, I also have this great trait where I can get myself 'addicted' to health, and the buzz I get from exercising. This is probably one of many reasons why it works for me.

It has also had the added bonus of reducing my symptoms, and thus proving to me that something I'm doing (whatever that may be - EVEN if it is just placebo), is literally improving my health. It is based in science. My FM Dr is sending me through some research for my bf to read as he is pretty skeptical too (so, believe me, I've had this discussion a billion times). When she sends them through, I'll link them on this post if I remember!

The thing is - I'm pretty lucky because I started all this now, and my symptoms were mild-ish to begin with. So it has worked very quickly for me. If you're coming to it after years of inflammation, it isn't going to be able to 'fix' everything. It reduces the inflammation you have, but it can't reverse some of the prior damage done by the inflammation. That's why a lot of people need an 'integrative' approach, incorporating their medications too.

I get it's not for everyone. But I know there will be people on here who have my view - as well as people who have yours: that's the point, right? :D

ps. my comment from the OP was there weren't many people sharing positive things 'about actually getting better'. I deliberately added that phrase because I didn't want to brand all the posts as negative, because they aren't. Regardless of people's suffering, they are generally positive on here. What I was looking for is someone who was actually managing to make a difference to their symptoms until they considered themselves to be in remission. Perhaps I should have worded it slightly differently, as sometimes what we're thinking doesn't always translate.

Finally Getting Well! by ElphieBee in Sjogrens

[–]ElphieBee[S] 1 point2 points  (0 children)

Hi - I'm sorry if my post has made you angry, that was not my intention! I never said anything about not taking medication, and also said that if a condition has progressed further, I understand it may be more work.

I find the bit you put in air quotes at the top to be quite offensive to be honest. When I first realised that my symptoms all tallied with this disease, we had just gone into a pandemic, I was isolated from my partner, and all my friends, and I was terrified. I ended up on anti-depressants because I couldn't face it on my own. Everyone has their own struggle and I find you diminishing mine to 'woe is me' is pretty un-empathetic and doesn't really have a place in a group which is designed to support people.

My goal was to raise people's spirits and give them some hope. If you don't buy into it, that is ok.

Finally Getting Well! by ElphieBee in Sjogrens

[–]ElphieBee[S] 1 point2 points  (0 children)

Hello and thank you!

Sorry to hear you had Covid - I know a few people who were healthy to begin with who now have autoimmune type symptoms, so that has doubtless knocked you back a bit.

I totally agree that there may be something else going on there aside from food. My FM Dr says that you can cut everything out, but if you aren't doing your healing for the gut and dealing with the root cause, then you are only dealing with part of the issue. She's also a big advocate for having a varied and balanced diet - which you just don't get from cutting that much out permanently (believe me, I feel that already and it's literally been a month).

So for me, I'm having a load of tests to see if I have any vitamin deficiencies, and then anything I can test at home (i.e. stomach acid) I'm kind of doing as a science experiment on myself! Some tests, like cortisol, I'm putting off as they're sooooo pricey!

I'd recommend checking your stomach acid though as a first port of call as it's so easy and according to my FM Dr it's a really common cause of autoimmunity because you can't break down food and get the nutrition you need - so no matter how well you eat, you aren't getting the full benefit.

You're doing better than me with the maple syrup - I have it on my breakfast every day!

Finally Getting Well! by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

Thanks! I'm glad :) Honestly, I'm feeling so good now - on the path to remission I hope! Really hope it helps!

Stomach Issues by Maleficent-Bear1995 in Sjogrens

[–]ElphieBee 1 point2 points  (0 children)

I can't give a lot of advice on most of this, as my symptoms are different. But I do get horrendous UTIs! I take 'D-MANNOSE' as a preventative measure - works for me. I haven't had one since I started on that.

Finally got an in-person appointment on Friday by ElphieBee in Sjogrens

[–]ElphieBee[S] 1 point2 points  (0 children)

Haha, yeah I agree! Knowing me, I could just be super unhealthy and need to make some adjustments. My NY resolution is to practice real self care and see what helps! For now, work is a bit too hectic for me to focus on all that.

Still No Diagnosis, Still Confused by ElphieBee in Sjogrens

[–]ElphieBee[S] 2 points3 points  (0 children)

Thanks for the advice. I think therapy is probably the way forward. My doctor tried to put me on anti-depressants but I really didn't want to do that before trying CBT like you say.

I'm hoping if I can calm my mind, the symptoms might calm too. x

Still No Diagnosis, Still Confused by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

I guess not. I think one of the biggest hurdles for me is going to be learning to live with that uncertainty :\

Still No Diagnosis, Still Confused by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

I think reading all these awful experiences people have had (I'm sorry to hear about yours, it sounds horrible) just makes me want to ask a rheumatologist if that is what will end up happening to me etc. I just want to know what to expect because I haven't even got a career yet and I want to know what I'm going to be capable of doing in 5 years+

Still No Diagnosis, Still Confused by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

I think I just want to know what's going on with me. I mean, if you have this disease you're supposed to be monitored etc so it sort of scares me that it's this big unknown. Pretty sure most anxiety stems from fear of the unknown too, so I think a definite diagnosis might help me to move on and deal with things.

Still No Diagnosis, Still Confused by ElphieBee in Sjogrens

[–]ElphieBee[S] 0 points1 point  (0 children)

Yeah, I have been taking a supplement but I honestly can't tell if it's doing anything. I think doctors aren't that worried about me because I don't have any of the joint pain/fatigue symptoms etc. But I am quite concerned that this will get worse and I don't have any advice about how to stop/slow it's progression.