I have reciently been diagnosed sjogrens & polmyalgia rheumatica. In flare up. Need advice.

Hi yes I am Pam from the FB group British Sjogren's are you a member of the BSSA? We are a FB group for BSSA members and those with Sjogren's Syndrome so are quite knowledgeable about it. You really should be getting proper treatment as if you don't it will only get worse. Your problems all sound very typical as Sjogren's is a very close cousin to Lupus and is a connective tissue disease so it can attack almost anywhere and everywhere in your body. What are your medicines? You really do need to take your health seriously, I know it's very frightening but you must explain to your GP how worried you are. I am sure he will understand. You do need help as the sicca symptoms can be reversed. The reflux is common as is IBS. Has your GP checked you for Coeliac? I'm negative so as my bloods a seronegative my Sjogren's comes down the seronegative line from either or both parents as my dad was Hypermobile and my mum had Psoriasis! You do need to look after your eyes too. I think my IBS is colitis related and Sulfasalazine has cured a lifetime of mouth ulcers! Have you had an ANA test if so what was the titre? If you haven't your GP can do bloods for both and see if your low on any vitamins and other problems also check your inflamitory markers. I hope this helps. If you wish to join British Sjogren's you are most welcome just ask to join, I am Pam Newman and am an admin, just mention tou found me on Patient and I will let you in xxx Good luck

Hi

Hi Susan. Im so sorry you are going through a flare.I have Sjogrens and Hashimotos. Sounds bad! I have the same symptoms as you...just went to emergency last week...thought I was having a heart attack....It was some kind of spasm or prednisone complication. I'm good now. my flares have been 10 days to 6 weeks. Many years I have gone through everyday symptoms to bad flares. OK - This is what I have found works for me: I take plaquenil and pilocarpine. I get up and move and stretch and either walk a mile (more if I'm having a good day) or some kind of lower cardio activity. I put a glob of coconut oil in my mouth everyday and swish for 10 to 20 minutes then spit. Moisturizes my mouth and is an antibacterial and antimicrobial which may help with secondary symptoms due to dry mouth, sinuses, esophagus. sip water all day. Hard part: I don't eat sugar, gluten or dairy. First 2 weeks felt like I had the flu, then I woke up one day and felt like a real, healthy person! Symptoms 80% better. I tested negative for celiac but the no gluten makes a world of difference - for me. no sugar - use monkfruit sweetener, fruits to sweeten, agave -  I know they all have sugar, but the refined sugar, sugar cane, fake sugars, - make my legs, fingers and stomach swell up.It is very difficult to find doctors to deal with this - after years I have a wonderful Rheumatologist and PMD. May when your rheum gets back, there could be some type of communication initiated by you between rheum and pmd. good luck, meditate, drink water, walk, and hopefully have a better day!!! Monika

p.s - I've also found that drinking tea with 1 tsp of coconut oil (20 calories) coats your throat and esophagus and moisturizes them. I get a big vat of it (on sale!) for my tea (or any warm drink, because it has to melt -  even warm water or almond milk). I use coconut oil right after the shower on my whole body (except face) and my dry lizard sjogrens skin is 90% better!  I also use restasis for eyes and flonase for sinuses - and saline cleanse my nose.

Hi Susan - I have similar symptoms. Sunsetstuff is right, try a paleo diet. Many of the foods we eat cause inflammation. I've been on Paleo for 2 weeks and feel much better. Still have the symptoms but not as bad.