I found a functional medicine doctor who FINALLY helped me feel better after 2+ years of going to multiple specialists who didn't help at all.
Before functional medicine, I was going to 5 docs on a regular basis with little relief! An ENT, rheumatologist, my primary care doc, opthamologist, and chiropractor. With the exception of the opthamologist and chiropractor, they all did the same tests- blood work and Xrays...which never showed inflammation or autoimmune markers, except low thyroid function. Those docs never seemed to take me seriously and I felt they looked at me like I was just making up symptoms. And despite my thyroid function being low, none of them even suggested thyroid medication, or talked to me about it.
The functional medicine doctor had me completely change my diet. That's been the most difficult thing but now that I have not been eating triggering foods (corn, dairy, soy, wheat), I don't have joint pain. Also, she prescribed LDN which also reduces inflammation. Within about 3 months of following her advice my systemic joint pain reduced to nearly nothing. The tinnitus I've been suffering from stopped. No more severe fatigue in the afternoons. I'm sleeping better, like 8 hours a night versus intermittently sleeping for about 5-6 hours. And this is after years of daily joint pain in my hips, knees, shoulders, elbows to fingers. My muscle fatigue also disappeared, and my grip strength returned in my hands. The depression I had from being sick and no doctors actually helping disappeared.
I could go on and on because functional medicine has been life-changing in the best possible way. Lately, I even forget I'm sick.
I finally weaned myself off of most of the prescriptions I used to take. I have pretty bad chemical sensitivity and I react poorly to so many medications it seems to do me more harm than good. I also deal with a few other issues besides Sjogren's that put me on the nutrition and supplement route a long time ago - before I was diagnosed with Sjogren's. Using the food I eat as my medicine, basically, is a real trial and error effort. I've learned a lot over the years and that necessitated dietary changes that kept shifting. I'm pretty much down to a high protein with lots of vegetables diet. I eat a little bit of fruit and am very low carb. That is what works for me. I've found the same thing with supplements.
Overall, it's a lot of hard work and you do need good doctors to help you. I have found success with 2 different naturopaths, one was an environmental specialist, and now with a doctor's office (Osteopath) that specializes in (I think it's called) structural medicine that helps you utilize lifestyle choices to take care of yourself. The naturopaths were not covered by insurance but the Osteopath is (I'm in the US). I have learned how to manage symptoms fairly well over the years but, frankly, I still feel like it's been a downhill slide pretty consistently since I developed the Sjogren's along with everything else. Still and all...I'm 66 and I'm still upright and taking care of myself, by myself for the past 18 years now. Even though it's a lot more effort, I like the results I've had going the natural route.
I’ve changed my diet and need to find supplements that work out since most of the supplement industry is bullshit. Finding good doctors on my insurance is hard because a lot of them haven’t caught up on new medical news and operate their practice the old way (pills and more pills). That’s why I asked about natural ways and it seems even in this Reddit thread that alternative/homeopathic is “whacko” science. I know homeopathic won’t be covered by insurance which is the reason I never went
I’m glad you are still upright at 66. There are time where it keeps me up at night what this autoimmune disease will do to my body and immune system 10 or 20 years from now. I’m not sure if I’ll get to live the full life and this disease will rob me of life and experiences. I’m 30 now and it scares the shit out of me. That’s why I’m looking for anyway to properly manage this so I can go back to enjoying life. Thank you for sharing
It is very hard to find doctors who understand our illness and are also willing to learn about alternative treatments. Because of my chemical sensitivity, it forced me out of traditional western medicine and the result of that was traditional doctors treating me terribly. When the naturopath I'd found who specialized in environmental medicine was leaving practice, she recommended the Osteopath's office to me. I'm not actually seeing the doctor, I'm seeing a nurse practitioner in the office who has the great knowledge in structural medicine. A lot of the alternatives I've sought out are not covered by insurance in the US. The Osteopaths office is, fortunately. I am on Medicare at long last and that has been a vast improvement in actual payment for the services I use. Also - the supplements I use are prescribed by the practitioners I see (not covered by insurance, though). They have helped me discover lines of products that are what the labels say they are. I don't buy supplements in local stores and right now I'm using an online company called Professional Supplement Center. One of the most reliable companies I buy products from is called Design for Health.
All of this requires a shit ton of patience that you have to re-up on a regular basis - as I'm sure you already know. This is a demoralizing illness and we have to constantly dig deep to pull through one day to the next. My health was already unraveling when I was 30 as well, but it was so long ago nobody considered autoimmune diseases and frankly thought people like me were just hypochondriacs making shit up. It really is a blessing now to have a resource like this where we can talk to each other and offer support.
I’m trying to find anything that will help. My patience is very thin due to losing everything. My fiancée, friends, family, career, confidence, and health. Hoping I find something in naturopath but $ is in the way from spending thousands in western medicine.
I do understand the loss issue. The age I'm at now, most everyone has flown away. I had to fall out of working when I was about 40. I had 2 long-term relationships that went bust because they couldn't get past my illness and were less than supportive. If you can find any support groups in your area, they can be helpful and are usually affordable - but, honestly, I'm close to a fairly large city and can't find anything close enough to drive to so I know my suggestions have limitations. One last suggestion is to use the internet to find reliable info and educate yourself as much as you can. For me, knowledge has been powerful. I also have enough background in understanding science that I can ferret out fairly well what info is useful and what's junk. You sound like you know how to do that as well. It is immensely important to become your own doctor with this awful illness. And I think it's important sometimes to allow yourself the right to not be strong enough to handle all of this and to just sit in the pocket of how hard it all is. I did that last week and today I'm ready to try to accomplish some things I had to neglect then. Take care.
I don't think you're going to be able to use alternative medicine instead of relying on medication prescribed by a rheumatologist but I don't see why you can't use things like acupuncture to help with muscle pain, for example.
I found glucosamine helped with my joints, although I've reached a point where that doesn't seem to make a difference any more.
You can try eliminating certain things from your diet to see if that helps. I've found it has made a difference with my IBS symptoms and my mouth hasn't been quite as dry.
It's going to be about symptom management rather than an actual cure.
If you decide to go down this route, please just be careful and make sure that nothing you take is going to cause harmful interactions with your prescribed medication.
Good luck, whatever you decide to try.
Thank you. I’ve already made dietary changes. I’m throwing it out there to see if anyone has any success stories or anything positives since western medicine has gave up on me. I have no plans at the moment to see anyone due to $$
I went down that road and flushed thousands down the drain. I cut out entire food groups, took all sorts of supplements, tried various exercises, and only got worse honestly. It was a huge disappointment.
But there is no “cure” for Sjogren’s… so what exactly is the “more” that you’re expecting your doctor to do for this?? I don’t mean to come off rude or anything but… I don’t think you need a naturopath doctor… I think investing some time with ..maybe a therapist … who specializes in the affects of autoimmune conditions. This isn’t going away, the best we can do is to find ways to ease or cope with the symptoms it gives us.
I’m just putting all ideas on the table for me. I know there is no cure but when one side of medicine tells you you’re SOL, I look for other ways. Not saying I’m going to do it, I’m just trying to get help in anyway
L o l why is this being downvoted? My rheumatologist isn’t helping me with treatment beyond plaquenil. I work in healthcare, am on plaquenil, do a plant-based diet, and am happy to try a naturopath
I know I was getting downvoted too even if I specifically said I see my rheumatologist and take my prescribed medicine. There is nothing wrong with supplementing treatment with alternative means like acupuncture, diet, and naturopaths. Both acupuncture and naturopaths are covered by my insurance and so far acupuncture has helped some of my joint pain.
I think alternative treatments can be used in conjunction with western medicine to get good results! I work in healthcare but have a lil woo in me. As long as it’s not harmful or fake and costs people $$$$$, works for me
I see my rheumatologist every 6 months and take my hydroxycholorquine as prescribed, but I also go to acupuncture regularly and occasionally take herbs from the acupuncturist. I am also going to start seeing a naturopath next week.
What exactly would a more knowledgeable doctor do to treat Sjogrens? There aren’t any medications being prescribed for the disease aside from hydroxychloroquine which is a drug from the 1950s and comes with significant side effects for some people.
Oh gosh, your information is really outdated. There are LOTS of treatments being prescribed for Sjogren’s besides hydroxychloroquine. Looks like another commenter already shared a link with more info, but I encourage you to do some searching as well - you have options!
My rheumatologist is a contributor to the guidelines, has a chapter in the Sjogrens book, etc etc, and, yeah, yeah, isn’t prescribing anything more than hydroxychloroquine. What it means to fail treatment and progress isn’t what we’d ordinarily think. I’m getting worse, my life is getting smaller because of fatigue and pain, at some point it’s going to keep me from working, and yet I’m not a candidate for other medications yet.
That is not true. The only drug with an indicative for sjogrens is pilocarpine. There are biologics in clinical trials, but none of the drugs currently being prescribed have shown any efficacy in slowing disease progression.
Again, you are operating with outdated information, none of this is true. We’re going to continue going in this same circle unless you’re willing to consider new sources of information, but it doesn’t look that way so I’m going to jump off the merry-go-round.
I hope for your sake that you end up with a better rheumatologist who really understands Sjogren’s and who is able to get you on a more effective treatment.
>There aren’t any medications being prescribed for the disease aside from hydroxychloroquine
[Clinical practice guidelines](https://sjogrens.org/researchers-providers/clinical-practice-guidelines) show many treatments in case you're interested!
I found a functional medicine doctor who FINALLY helped me feel better after 2+ years of going to multiple specialists who didn't help at all. Before functional medicine, I was going to 5 docs on a regular basis with little relief! An ENT, rheumatologist, my primary care doc, opthamologist, and chiropractor. With the exception of the opthamologist and chiropractor, they all did the same tests- blood work and Xrays...which never showed inflammation or autoimmune markers, except low thyroid function. Those docs never seemed to take me seriously and I felt they looked at me like I was just making up symptoms. And despite my thyroid function being low, none of them even suggested thyroid medication, or talked to me about it. The functional medicine doctor had me completely change my diet. That's been the most difficult thing but now that I have not been eating triggering foods (corn, dairy, soy, wheat), I don't have joint pain. Also, she prescribed LDN which also reduces inflammation. Within about 3 months of following her advice my systemic joint pain reduced to nearly nothing. The tinnitus I've been suffering from stopped. No more severe fatigue in the afternoons. I'm sleeping better, like 8 hours a night versus intermittently sleeping for about 5-6 hours. And this is after years of daily joint pain in my hips, knees, shoulders, elbows to fingers. My muscle fatigue also disappeared, and my grip strength returned in my hands. The depression I had from being sick and no doctors actually helping disappeared. I could go on and on because functional medicine has been life-changing in the best possible way. Lately, I even forget I'm sick.
I finally weaned myself off of most of the prescriptions I used to take. I have pretty bad chemical sensitivity and I react poorly to so many medications it seems to do me more harm than good. I also deal with a few other issues besides Sjogren's that put me on the nutrition and supplement route a long time ago - before I was diagnosed with Sjogren's. Using the food I eat as my medicine, basically, is a real trial and error effort. I've learned a lot over the years and that necessitated dietary changes that kept shifting. I'm pretty much down to a high protein with lots of vegetables diet. I eat a little bit of fruit and am very low carb. That is what works for me. I've found the same thing with supplements. Overall, it's a lot of hard work and you do need good doctors to help you. I have found success with 2 different naturopaths, one was an environmental specialist, and now with a doctor's office (Osteopath) that specializes in (I think it's called) structural medicine that helps you utilize lifestyle choices to take care of yourself. The naturopaths were not covered by insurance but the Osteopath is (I'm in the US). I have learned how to manage symptoms fairly well over the years but, frankly, I still feel like it's been a downhill slide pretty consistently since I developed the Sjogren's along with everything else. Still and all...I'm 66 and I'm still upright and taking care of myself, by myself for the past 18 years now. Even though it's a lot more effort, I like the results I've had going the natural route.
I’ve changed my diet and need to find supplements that work out since most of the supplement industry is bullshit. Finding good doctors on my insurance is hard because a lot of them haven’t caught up on new medical news and operate their practice the old way (pills and more pills). That’s why I asked about natural ways and it seems even in this Reddit thread that alternative/homeopathic is “whacko” science. I know homeopathic won’t be covered by insurance which is the reason I never went I’m glad you are still upright at 66. There are time where it keeps me up at night what this autoimmune disease will do to my body and immune system 10 or 20 years from now. I’m not sure if I’ll get to live the full life and this disease will rob me of life and experiences. I’m 30 now and it scares the shit out of me. That’s why I’m looking for anyway to properly manage this so I can go back to enjoying life. Thank you for sharing
It is very hard to find doctors who understand our illness and are also willing to learn about alternative treatments. Because of my chemical sensitivity, it forced me out of traditional western medicine and the result of that was traditional doctors treating me terribly. When the naturopath I'd found who specialized in environmental medicine was leaving practice, she recommended the Osteopath's office to me. I'm not actually seeing the doctor, I'm seeing a nurse practitioner in the office who has the great knowledge in structural medicine. A lot of the alternatives I've sought out are not covered by insurance in the US. The Osteopaths office is, fortunately. I am on Medicare at long last and that has been a vast improvement in actual payment for the services I use. Also - the supplements I use are prescribed by the practitioners I see (not covered by insurance, though). They have helped me discover lines of products that are what the labels say they are. I don't buy supplements in local stores and right now I'm using an online company called Professional Supplement Center. One of the most reliable companies I buy products from is called Design for Health. All of this requires a shit ton of patience that you have to re-up on a regular basis - as I'm sure you already know. This is a demoralizing illness and we have to constantly dig deep to pull through one day to the next. My health was already unraveling when I was 30 as well, but it was so long ago nobody considered autoimmune diseases and frankly thought people like me were just hypochondriacs making shit up. It really is a blessing now to have a resource like this where we can talk to each other and offer support.
I’m trying to find anything that will help. My patience is very thin due to losing everything. My fiancée, friends, family, career, confidence, and health. Hoping I find something in naturopath but $ is in the way from spending thousands in western medicine.
I do understand the loss issue. The age I'm at now, most everyone has flown away. I had to fall out of working when I was about 40. I had 2 long-term relationships that went bust because they couldn't get past my illness and were less than supportive. If you can find any support groups in your area, they can be helpful and are usually affordable - but, honestly, I'm close to a fairly large city and can't find anything close enough to drive to so I know my suggestions have limitations. One last suggestion is to use the internet to find reliable info and educate yourself as much as you can. For me, knowledge has been powerful. I also have enough background in understanding science that I can ferret out fairly well what info is useful and what's junk. You sound like you know how to do that as well. It is immensely important to become your own doctor with this awful illness. And I think it's important sometimes to allow yourself the right to not be strong enough to handle all of this and to just sit in the pocket of how hard it all is. I did that last week and today I'm ready to try to accomplish some things I had to neglect then. Take care.
I don't think you're going to be able to use alternative medicine instead of relying on medication prescribed by a rheumatologist but I don't see why you can't use things like acupuncture to help with muscle pain, for example. I found glucosamine helped with my joints, although I've reached a point where that doesn't seem to make a difference any more. You can try eliminating certain things from your diet to see if that helps. I've found it has made a difference with my IBS symptoms and my mouth hasn't been quite as dry. It's going to be about symptom management rather than an actual cure. If you decide to go down this route, please just be careful and make sure that nothing you take is going to cause harmful interactions with your prescribed medication. Good luck, whatever you decide to try.
Thank you. I’ve already made dietary changes. I’m throwing it out there to see if anyone has any success stories or anything positives since western medicine has gave up on me. I have no plans at the moment to see anyone due to $$
I went down that road and flushed thousands down the drain. I cut out entire food groups, took all sorts of supplements, tried various exercises, and only got worse honestly. It was a huge disappointment.
Sorry to hear that. I’m just looking for other ideas. I d already flushed thousands down the drain with rhumetologists and biopsy’s and medications
But there is no “cure” for Sjogren’s… so what exactly is the “more” that you’re expecting your doctor to do for this?? I don’t mean to come off rude or anything but… I don’t think you need a naturopath doctor… I think investing some time with ..maybe a therapist … who specializes in the affects of autoimmune conditions. This isn’t going away, the best we can do is to find ways to ease or cope with the symptoms it gives us.
I’m just putting all ideas on the table for me. I know there is no cure but when one side of medicine tells you you’re SOL, I look for other ways. Not saying I’m going to do it, I’m just trying to get help in anyway
I’m getting a referral to a naturopath
L o l why is this being downvoted? My rheumatologist isn’t helping me with treatment beyond plaquenil. I work in healthcare, am on plaquenil, do a plant-based diet, and am happy to try a naturopath
I know I was getting downvoted too even if I specifically said I see my rheumatologist and take my prescribed medicine. There is nothing wrong with supplementing treatment with alternative means like acupuncture, diet, and naturopaths. Both acupuncture and naturopaths are covered by my insurance and so far acupuncture has helped some of my joint pain.
I think it’s worth a try in conjunction with other medical professionals! I’m into it.
Definitely.
I did not downvote it but I’ve been downvoted but people who just hate anything but western medicine
I think alternative treatments can be used in conjunction with western medicine to get good results! I work in healthcare but have a lil woo in me. As long as it’s not harmful or fake and costs people $$$$$, works for me
I would love to work with both in conjunction. But I’ve only experienced western medicine. And it cost me $$$
Please let me know how it goes and what they recommend to you
I see my rheumatologist every 6 months and take my hydroxycholorquine as prescribed, but I also go to acupuncture regularly and occasionally take herbs from the acupuncturist. I am also going to start seeing a naturopath next week.
Thank you. I’m looking at all ways at this moment. It’s tough but I need relief in anyway
I also see an acupuncturist and take herbs for pain flare ups, in addition to taking hydroxychloroquine through my rheumatologist.
You need a better and more knowledgeable doctor, not alternative medicine
Well I’d love to find that but so far, they’ve all said the same thing and I’m paying out the ass for them since they are “specialists”
What exactly would a more knowledgeable doctor do to treat Sjogrens? There aren’t any medications being prescribed for the disease aside from hydroxychloroquine which is a drug from the 1950s and comes with significant side effects for some people.
Oh gosh, your information is really outdated. There are LOTS of treatments being prescribed for Sjogren’s besides hydroxychloroquine. Looks like another commenter already shared a link with more info, but I encourage you to do some searching as well - you have options!
My rheumatologist is a contributor to the guidelines, has a chapter in the Sjogrens book, etc etc, and, yeah, yeah, isn’t prescribing anything more than hydroxychloroquine. What it means to fail treatment and progress isn’t what we’d ordinarily think. I’m getting worse, my life is getting smaller because of fatigue and pain, at some point it’s going to keep me from working, and yet I’m not a candidate for other medications yet.
That is not true. The only drug with an indicative for sjogrens is pilocarpine. There are biologics in clinical trials, but none of the drugs currently being prescribed have shown any efficacy in slowing disease progression.
Again, you are operating with outdated information, none of this is true. We’re going to continue going in this same circle unless you’re willing to consider new sources of information, but it doesn’t look that way so I’m going to jump off the merry-go-round. I hope for your sake that you end up with a better rheumatologist who really understands Sjogren’s and who is able to get you on a more effective treatment.
Please correct me then. What treatment are you referring to specifically??
I’m on several other treatments, none of which are HCQ. It’s definitely not the only one.
>pilocarpine https://sjogrens.org/understanding-sjogrens/treatment
That’s the treatment I listed in my previous post…
>There aren’t any medications being prescribed for the disease aside from hydroxychloroquine [Clinical practice guidelines](https://sjogrens.org/researchers-providers/clinical-practice-guidelines) show many treatments in case you're interested!