I will try to catch up on all the comments in this reply, so please bear with me if I miss something. *hugs*
EnjoyLife - thank you - I hope you are able to find a yoga practice that sustains you. After 2 frozen shoulders in 4 months, I've realized I can't do what my teacher does, and so I am definitely focussing on a gentler practice that I can sustain without injury. As for not tolerating the treatments - I think the treatments were more scary than anything for me. I would develop a rapid worsening of my depression and self-harming tendencies... now, although I must live with the pain as so many of us do, I still feel better than that scary out of control feeling on the meds, and I read so much about side-effects - I just believe I have a very sensitive system and maybe it is all for the best. I have tried several dietary things, and I continue to work on that - it's hard as food is my last "vice" and while I've never been a huge junk eater, I still love my chocolate, and that is definitely my downfall. *gentle hugs*
SK - I am not so sure now my reaction wasn't the reaction to the frozen shoulder inflammation. It's happened twice in 4 months, and both times there was a night that was really bad pain and inflammation and fever wise (like almost ER levels) and I think there was some of that going on. The turmeric is prescribed by the naturopath and I totally trust her. I've taken several doses since and the main thing is the worsening of the cankers... as someone else mentioned maybe too hot for my system. Thank you!
Evelyn - thank you! I forget that I speak sometimes in an "illness" short-hand LOL. Like you, I have had a history with mouth ulcers since shortly after I first got ill. My daughter rolls her eyes when I say that I have had a sore throat for 21 years, but that's what it has been like. I find that sulphites (which are very drying) make the whole thing worse, so I avoid those in food and meds as much as I can. When I have a flare up, just all the symptoms get worse and I actually talk about them (instead of forgetting they're usually there all the time). Sugar is a bad thing for sure and it's the one thing I struggle with as I love chocolate so much... kinda like one of life's last pleasures. My teeth are pretty much already a mess, and I can't afford the dentist since losing my job earleir this year, so I just try to be extra careful with the oral hygiene. Gargling sea salt seems to soothe the cankers somewhat. Thank you *hugs* and many blessings back to you.
Hi Connie - I'm sorry you are having the same reaction to the drugs. It can be very frustrating. I had to go on prednisone for pneumonia once - within 3 days I was a wreck. I became very suicidal. It's just not a good drug for me at all. Even the therapeutic dose of plaquenil made me suicidal/self-harming, so I am a firm believer that Sjogren's is very much part of the mind as well as the body, and what affects one affects the other. I have an immune support called Moducare that I have taken for some 11 years. It has stopped me getting pneumonia and bronchitis each year, so that's been a huge blessing for me. I avoid citrus for the very reason that it makes my mouth sorer. :) I'll be interested to hear if you have any positive outcomes related to the turmeric. I am just starting on one cap a day, seeing how I go with that. I'm not sure how much is in the capsule. As I mentioned above, canker sores have been a main feature of my Sjogren's for over 21 years - they just get worse when I flare, and I think it was the shoulder injury that night that caused it - maybe the turmeric was a coincidence...
DLT88 - thank you so much for your support and for the really helpful information. It's quite possible you're right that the turmeric is too hot. I did some Ayurveda as part of my training and it said I was mostly Pitta (fire) so maybe it's not good to add fire to the system. I've also always had to avoid a lot of spices because they often add sulphites and I definitely do not do well with those. I will look into info about the cats claw and devils claw and quercetin. Thank you so much, it's so good to have alternatives!
BigMama - That's a good question - I've done some reading and it seems suggestive that autoimmune diseases could be a risk factor for frozen shoulder (I don't know about frozen hip, but it might be similar), and I read that diabetes was also a risk factor. What caused the frozen shoulder for me was actually doing yoga - and essentially doign the equivalent of push ups during a sequence called a sun salutation - which lifting 210 pounds up on my shoulders was apparently not at all a good thing. So I have to revisit my whole approach as obviously this is not something I can do now. I put on all of my weight in the frist few years of my illness in the nineties, when I was on a lot of inappropriate psychiatric meds for my depression. I spent some time with a yoga therapist and remarkably, her therapy was based on lots of very small, gentle movements. It can take up to a year to heal from a frozen shoulder, so you don't want to be overstressing it. You do need to keep things moving, but not overinjure it so that it freezes again. My therapist wanred me that doing regular yoga classes would re-freeze my shoulder and she was right! I am going to be an advocate for gentle yoga for sure. I hope you can find some gentle stretching to help. There seems to be a lot on Youtube - just make sure you research a bit as some people out there know less than they think they do! Take care!
Thanks everyone, *hugs*