Hard to be hopeful..

Lisa, when you are in the thick of symptoms etc it can be hard to be hopeful. I would say take 1 thing at a time. Can you give up smoking? If so, then do it. That will help over time with lots of medical issues. If you simply cant, then move on and dont beat yourself up about it. Tackle the next issue. This does wax and wane for some people. For me, not so much, but when i am dealing with it well it can feel like its waning a bit so thats a plus anyway. Find specialists you can talk to to and who explain things well and with compassion. It isnt the end, but you need to get some control over both some symptoms and your attitude and approach. Its all real, but your mind can positively affect how well you manage.Lots of people here can help you. Dont lose hope.

Hi Lisa,

I too live in the "great" old US of A (I use great VERY loosely) many think that here we should be up on things, not the case. I believe we are behind many countries when it comes to autoimmune health care... I have been sick for about seven years due to my autoimmune diseases. With sjogrens, with my own experience & reading those of others, your blood work does not always have to be either positive or negative to have the disease. Mine is good one time, bad the other but I am diagnosed as having sjogrens & uctd. To get back to some of your questions, when you have an autoimmune disease you can have a mess load of other problems as well. (Most common, TMJ, mouth sores, bad teeth, mouth dryness, ear problems, loss of hearing, eye dryness, gritty eyes, cataracts, loss of eyesight, nose dryness, nose bleeds, loss of smell, dry skin, itchy skin, neuropathy, raynauds, pain in organs, (problems with organs) uti's, constipation, ibs, stomach problems, Barrett's esophagus, gerd, difficult urination, these are just a few of the most unpleasant side effects, which I have them all, as with many others) I too was asked if I smoked (do not, never have) but yes, smoking can cause problems when it comes to having diseases (I am not sure if smoking can cause the autoimmune disease, although docs believe that I developed autoimmune disease by the abundance of surgeries that I had in relatively short periods of time & the stress it caused on my body, as well as some devastating events in my life) I do believe that smoking can have effects on the autoimmune, but I do know that quitting smoking is no walk in the park. Perhaps you can look into ways to help you with your smoking, try cutting down, then weaning off, I have heard there are a lot of helpful ways of doing so. I know it's not a pleasant nor easy process (I have family members who have succeeded) I hope you can find a way to quit... best of all to you, take care... 😊

Hi Lisa,

I'm so sorry to hear you're going through a bad time. Sjogren's syndrome (SS) affects everyone in different ways, but many of us go through a series of flare-ups and remissions. So you won't necessarily always feel the way you do now.

Concerning the TMJ, as far as I know this is not SS related. There are many causes, and the solution depends on the cause. You really need to see a maxillofacial surgeon about this. They are the experts. (Don't be put off by the word "surgeon" - most of the solutions are not surgical.)

The sicca symptoms and Raynaud's are, of course, down to SS. Raynaud's is made worse by the nicotine in cigarettes, but it's by no means an exclusively smoking-related condition. I have it too and I've never smoked in my life! Mine suddenly started at age 60, ten years after I had my first SS symptoms. In fact, the appearance of Raynaud's was instrumental in my doctor finally making a diagnosis of SS. In the ten yeas up till then my GP, a couple of dentists and an ophthalmologist had been putting it down to allergy, old age(!) and goodness knows what else. You're actually quite lucky to have got a diagnosis so quickly. Ten years seems to be about par for the course, going from what many posters on here have said.

I'm sure no one is going to judge you for smoking. However, smoking conventional cigarettes is definitely going to make the sicca symptoms worse, especially the dry mouth. SS can also affect your lungs as it progresses, so you might want to re-think the decision to continue on this basis too. I suddenly started developing asthma at age 70, and my doctor warned me that I was developing the very early signs of COPD, in spite of never having smoked a single cigarette in my life. Fortunately, use of a low-dose steroid inhaler has now brought this under control.

Why not try gradually phasing out cigarettes in favour of vaping? This won't help the Raynaud's, as it's the nicotine that causes that. However, it's the tars in conventional cigarettes that cause all the lung problems, as well as cancers in other parts of the body. Vaping wouldn't have nearly the same effect on your sicca symptoms as cigarette smoking.

I volunteer in a mental health centre, and I was having a conversation about vaping only the other day with a young man with severe mental health problems - a group where heavy smoking is quite common. He had been on 50 a day since his early teens, and it had already started taking a toll of his physical health by age 30. He was really singing the praises of vaping. His terrible "smoker's cough" (which is also due to the tars, not the nicotine) had disappeared, and he was delighted at being able to run up flights of stairs again without getting breathless.

However, there was one thing he said that really caught my attention. He said his nicotine consumption had also gone down since he'd started vaping. It seems that since he's had his e-cigarette, he actually smokes for shorter periods. He said that most smokers don't like to waste a normal cigarette, so will smoke it to right to the end, regardless of whether they really want it all or not. Since he's been vaping, he's noticed that he just pulls on his e-cigarette till he feels he's had a sufficient nicotine hit, then turns it off. He's also noticed the financial effect of this!

So... stop beating yourself up about smoking, but try to replace at least some of your daily cigarettes with vaping. See a maxfax about your TMJ (which may well be causing your tinnitus as well). Take your rheumatologist's advice about your sicca symptoms. And keep hanging out on this forum, where you'll get all kinds of support and useful advice from fellow sufferers.

This site also has a number of forums on oral and dental problems, where TMJ and its treatments is often discussed. I know this because I went on there when I wanted some input on a dental problem (not TMJ) that I was having last year. They may also have a specific TMJ board.

Try and stay as positive as you can. Some of us find this has a big effect on our SS symptoms.

Hi Lisa

You've been hit with a lot of stuff. Each of your conditions can be overwhelming; to be hit with all of them at once is like, Kablam!

I'm in the States too. I smoked from age 19 - 53, with one 4 year break in my 40s. For the 1st 25 years I smoked a pack a day, but by the end only 4 or 5 a day, tho they were really loooooong cigs, lol. It's been more than 10 years since I quit for good. Your next quit could be your last one so don't give up. Most people quit many many times before the final quit - and then tgere are the weirdos who quit cold turkey. If you have any belief system, turning to that higher power may help when urges hit you. Faith was the only thing that finally worked for me as even the lowest dose patch and lozenge contained more nicotine than i was getting from cigs, thus making me crave more.

You haven't mentioned any terminal diseases. I'm in my 60s, was diagnosed with Sjogren's in my 30s but probably had it all my life. I have lupus. I've got 2 big lung diseases, 1 of which might be from smoking. I've had a lot of good life since all these diagnoses, and you will, too. But there is an adjustment period. These support groups help a lot, as can in person groups. If necessary, ask for referal to a counselor.

There are tons of free aids to help you quit smoking in this country. The American Lung Association has toll-free numbers and they're a good place to start. Some States give out patches for free as part of the settlement of the tobacco law suits -- more than 20 years ago. We've known since at least the '60s that smoking is harmful. The lawsuits over precisely that issue began 30 years ago, in the '80s. So if we try telling docs that nobody knew smoking was harmful until yesterday, they will blow us off. They expect us to take some responsibility -- and given what cigarettes have cost for the last 12 or so years, and given the warning on the packages, we do have to accept our responsibility. It will make all your dealings with doctors much easier, AND you can then ask for help on quitting! Some GPs and clinics have free support programs.

Keep on quitting@