Just diagnosed with sjogrens syndrome

Hi Carol! Welcome to the wolrd of Sjögren's! I was diagnosed with primary sjogren's nearly 18 years ago. I have been symptomatic for 21 years. It started with dry eyes and a diagnosis if TMJ. My dentist told me to bite my tongue to relax my jaw and to massage the jaw with heat. Massaging didnt work DO NOT MASSAGE, but biting my tongue does sometimes. Speaking from experience, it is most likely your siliva glands acting up. Do oranges or acidic and salty foods hurt to eat or smell? Try to stay away from acidic and salty foods when this happens. I have incorporated a lot of anti-inflammatory foods into my diet and this does seem to help with everything. On occassion I do have cluster migraines and feel it mostly when I feel facial numbness. I have had a ton of regular headaches as well and loads of fatigue. I gave up coffee and surprisingly 90% of my fatigue went away and so did most of my headaches. Also discovered I developed a load of environmental allergies. Zyrtec really helped. Also, I was super low in Vitamin D and am now on daily dose of 1000 units. Really helped all around. Now when I am fatigued its either because of my arrhythmia that has recently developed, neuropathy, carpal tunnel or joint inflammation. Unfortunately Sjogren's fatigue is not so cut and dry. There are so many things that effect it and with sjogren's there are so many complications, including fibromyalgia. Hopefully you have a good rheumatologist who will help you solve your ails. I am looking into starting methotrexate because my neuropathy is worsening and I think it is the cause of my arrhythmia. I had a kid and I foolishly ignored my care for 10 years and my sjogren's came back with a wham! You definitely need to maintain your care and need a good team of doctors to help you and that believe in you. A lot of general practitioners are clueless so make sure you have a good rheumatologist. I don't know about the UK but here in the US, it is a connective tissue disease like rheumatoid athritis and lupus. I can get a medical marijuana if I wanted for the pain and am covered with short term disability. If your pain is causing your chronic fatigue, your blood test should show your level of inflammation and pain. I dont see why you shouldnt be qualified for disability benefits. Good luck with your journey.

Hello Carol.

SS affects people in very many different ways. You should arm yourself with all possible credible knowledge. Start with which is the British Sjorgrens Syndrome Association. They have a wonderful helpline. I bought a little book called Living with Sjogrens Syndrome

by Sue Dyson. You can get second hand copies online. Don’t get dragged into the USA side of things; they blind themselves with science. 

I personally obtained the names of consultants in my area that was given to me by the Association. I chose one within my area. I had a private consultation for about £250 then switched on to her NHS list (I’d establied first that this was possible) as my doc said he’d refer me.

as for benefits, the Association might be able to advise. I suspect Attendance Allowance might be available if you fit the criteria and also it’s not means tested.

You should also look at having special toothpaste with high fluoride. I use duraphat 5000 prescribed by the dentist. And regular eye tests. My multifarious existing problems fell into place when I had my diagnosis. It was when I was about 62 or so. Now 76 and other problems manifesting which I won’t bore you with.

Hope this helps. I live near Manchester by the way. There’s a local BSSA members group that meets quarterly but it’s very small though friendly. They have speakers at most meetings, too. There are other groups around the UK.

Keep well. All the best

Estelle

welcome to our world

Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.