Feel like I am alone

I am looking for some current activity. It looks like what is here is years old. I soooo need to tslk to some others dealing with this.

Hi there! I’m in here at least once a day. I’m one of the moderators here in this site, as well as ModSupport on all of the Ben’s Friends sites.

And to answer your question, yes, I have Sjogren’s. It’s not my primary condition, but I suspect that is become more and more of a problem these last few years, with neuropathy, pericarditis, etc.

@SSRedhead how are you doing? I hadn’t heard back from you

Still learning how to keep up to date on messages.
I seem to have on and off. I work around house and yard until my engine stops. Then I have to rest for a few hours and get uo and go again.
The fatigue is the hardest to deal with.

That has definitely been one of my biggest struggle. If you can pace yourself that would be great. But if not, taking rests is just fine. I’ve done it for years. Most days I take an afternoon nap, and one of my cats just loves afternoon nap time. Sometimes she comes and bothers me because I haven’t gotten up to my bedroom yet.

Are you on any medications to control the disease?

Have something gor the dryness and the joint pain.
I also usually take an afternoon nap. If I go too many days in a row without a rest, I usually have a whole day down. I do not like those days.

It is hard to remember that this is not like a cold, it is never going to go away.

Definitely not like a cold. I was diagnosed with psoriatic arthritis fourteen years ago, and Sjogren’s maybe eight years ago. I had some level of dryness for years, but then overnight was struck with extreme eye and mouth issues. Near daily naps are just part of the landscape for me, as are a whole bunch of daily and weekly meds, and so many doctor’s appointments. I’m not going to say that it gets easier, but it will become just a part of your routine. Getting decent control over your symptoms will help a bunch.

How have all of the doctors appointments helped?
I am sorry you are having so much trouble with symptoms.

So many doctors. I have Sjogren’s and Psoriatic arthritis. I have asthma. I’m 50. I’ve had multiple joint surgeries. Cataract surgery. And so on and so on. The idea for the arthritis in particular is to slow the progress of damage.

Last year I had multiple fractures in my feet. I still don’t really understand what was behind that. One of them ultimately needed surgery to repair it.

I guess that some of it is to manage the chronic end of things. The other part is to put out fires

Good morning! It’s been a while since I’ve heard from you @SSRedhead. How have you been doing?

I lost one of my tear duct plugs last week, but I’ve been pleasantly surprised to see that while I do need it replaced, it’s not an urgent matter.

Just so you know, I’m typically here at least once a day. If you ever want to reach out, know that you won’t be waiting too long for a response.

Thanks so much. How have you been doing?

So sorry to hear about your tear duct.

So far so good, I have not needed to make an appointment to go get a new plug put in. I think I’m seeing the doctor in 2 months, so I’ll just let them know if I think I need a new one before then.

So I actually deal with both sjogren’s and psoriatic arthritis. So I’ve been in a bit of a bad cycle lately. I’m sort of in between medications and I’m still waiting for the new medication to fully kick into gear. So lots of joint pain and swelling all over the place.

And then just for the heck of it I get random weird paresthesias, presumably from the sjogren’s. But yesterday I was in the car for a while and part of my back was weird and tingly and uncomfortable. I never understand how those things come and go. Do you have any issues with paresthesia?

Have you been tested for lymphatic or bone issues or have they done a PET scan on you to see why you are breaking bones? Just wondering if they haven’t made sure they haven’t checked all bases. They should run some tests to make sure your white blood count is okay.

The good news is that i haven’t broken anything for two years now. That doesn’t make me any less nervous about it, but the more time that passes, the more relieved I feel.

I did have quite a bit of testing done. I had a bone density test, all sorts of blood work, 24 hour urine, etc. Nothing awful, just steady decline.

Welcome here by the way!

That’s good news, Stoney. And thank you for the warm welcome. I’m being tested for sjogrens. It’s been a long road just to get to this point. I have a condition called fibromuscular dysplasia (which caused 5 cerebral aneurysms and I needed 2 open brain surgeries) and it seems like most doctors only want to focus on that and think my “aches and pains” are a result of getting older. It was my pain management doctor and my oncologist (I had breast cancer too) that finally made the referral to the rheumy. My ESR came back at 52 and when I called my primary doc’s nurse she said my ANA was negative 40. I don’t think she knows what she’s talking about. The results aren’t even posted on my chart on the hospital even though I made that request a week ago. I have trigeminal neuralgia, parasthesia/anesthesia in all of my limbs, get headaches every day at 3:00, and get horrible dizzy spells. Did I mention the fatigue? That started about 10 years ago. I also can’t climb stairs, can’t wash my hair without my arms aching and my vision gets brights spots at times. I fear that if this is sjogrens, my doctors ignored me for too long and irreversible damage has been done.

Edit: I also have sicca and xerostomia and have lost 5 teeth in two years. I don’t know what I am going to do. I’ve taken such good care of my teeth all of my life. I don’t have the money to do implants on all of my teeth. I put one Pontic in, and the tooth next to it broke off. I taste salt constantly and get “hot mouth” frequently.

You certainly have your hands full with chronic health concerns. I’m not surprised that the doctors focus in on other things, but fatigue and pain are real issues.

Sorry, this is Stoney. I’m signed in with my alter identity right now.

Welcome, Holly! Like you, I am in the process of getting a diagnosis and that is not going well for me. I was sero-negative but have almost all the signs of it. Recently in the hospital because of extreme weakness and marked trouble breathing. The doctor whose care I was under refused to even look at Sjogren’s despite the ENT doctor who scoped me and thinks I have Sjogren’s because of how very dry I am. How are you doing now?

I wonder how you are doing now, SSRedhead? Like you, I am looking for support. I hope you are doing as well as possible!