Sjogren's Syndrome Support Group

my vitam. D level dropped to 4.5 and the doc has put me on 50000 ui 3 times a week. I am tired all the time but cant sleep because I have developed what the doctor is callin a spastic spasm involving the whole body anytime my muscles try to relax. he has double my muscle relaxent to see if this works but i am without my pain meds waiting for the results for a pain specialist physc. doctor to make sure i am not going to become addicted t the pain med. I really hate doctors sometime.

oh yeah i have the under jaw pain too and i have been having os much trouble swallowing some days its seems hard to swallow water. It took me 6 months of begging doctors and finally this one in SC has scedualed a barrium swallow for tuesday. the doctors all looked at me like i was nuts when i told them about the probliem of swallowing

I think it can really cause a problem as far as you're relationship with your doctors when they have that type of reaction. It's really important to find ones you can trust and work with. I've found for myself that even if they need some education but they believe you and are more than willing to work with you then that's a whole lot better than the informed doctor who doesn't believe you or believe what you say let alone work with you.

I almost jumped for joy when I finally got a rheumy that listened to me about the jaw pain and also confirmed that it was the salivary glands hurting which was, of course, caused by the Sjogren's. I had been trying for months and months to get someone to listen to me. I was on the verge of giving up. She was a new dr. She's one of my favorite drs. ever now. It is just so sad that we have to go through so much to get any help, relief. I wonder sometimes if I'm just not saying it right, am I not using the right words? But I don't think it's us. I think they don't listen. They just think they know everything I guess. Bears, I'm glad you're at least getting them to do some tests. Finally, huh?

I think with my own doctors I've found that I complain about a symptom like the brain fog and they brush it off. I don't think they do it on purpose just that they dont realise how bad it was. One of the best ways I've found to make them take it seriously is describe how it affects me. I'll never forget the expression one doc got when i told him I haven't driven in over two years becausse of it and I'm still just 20. How many people my age would give up driving like that. Suddenly after that he's been asking questions and monitoring it. I think sometimes we have to be insistant.

I know I stuggled a long time with thinking the doctor was always right. It seems like it's kind of drilled into us and even doctors have a "mightier and thou" type attitude. In reality they're as human as we are and they are wrong sometimes. When I realised that it was easier to be pushy and to advocate for myself.

Mizu

you are so right mizuiro, but i have found with some of these doctors that when i am pushy or try to get them to listen they either tag me as a problem maker and hypochondriac or because along with everything else I need pain meds so then i must be an addict. I try telling them that i can go without my pain meds with no wirhdrawl on the longer i am without the the closer i get to being confined to bed. it takes about a week to 2 wks after stopping them. thats why i know that i will be bed ridden again soon unless this psychiatrist decides that i am not at risk to becoming an addict. it seems like we(all of us with SS or fibro or both) can't win sometimes. we get things going good in one area and they take it away in another. to tell the truth i am afraid to say anything because i dont want to be labeled either of the above.

Oh My Gosh!!! I am so glad that I found this group...I'm not the only one going through this stuff. If it didn't hurt to cry, I would be right now! For so long I have had almost every symptom on this forum and it is really scary when I feel so alone with the pain. My first discernible problem started with a swollen salivary gland, but I have always had problems with cavities, in fact I lost all of my teeth by the time I was in my mid-twenties. I'm guessing that I have had this problem for awhile, just didn't realize it until symptoms got frightening.

I understand what you mean, charlamar. It takes around 7 to 8 years for a Sjogren's patient to be diagnosed. We "know" something is just not right with our bodies but its difficult to describe to a doctor because the symptoms can lead to so many different ailments!

For some people, their symptoms present themselves loud and clear and yet their blood tests lie! Its so frustrating sometimes, but we have to persevere until we find a doctor who listens to us and takes time to learn about what we're feeling and how we feel it.

Do you also have dry eyes, and dry mouth? Those two symptoms are also a couple of the main symptoms of Sjogren's Syndrome. I replied to another post of yours, giving you a few websites you can check out to find out if your symptoms match those of SS, and Fibromyalgia. For some reason, many patients who have Sjogren's also have Fibro.

Please continue to let us know how you're doing...

Sonni

BUT EVERY SINGLE ONE OF US HAS TO REMEMBER THAT NO MATTER WHAT A DOCTOR SO MEDICAL PROFESSIONAL TRY TO SAY OR AS IN A LOT OF OUR CASES NOT MATTER HOW MANY DOCTORS I STILL HEAR ARE YOU SURE YOU HAVE SJOGREN'S AND FIBRO. WE KNOW OUR BODIES BETTER THAN ANYONE IN THIS WORLD AND DONT LET THEM TRY TO US GUILT, THAT OLD SEND THEM TO A MILLION PEOPLE NEVER MIND THEY CAN HARDLEY FUNCTION WHEN THEY SEE 1 DOC A WEEK. WE ALL HAVE TO KEEP PUSHING AND STANDING UP FOR OURSELVES. IT IS HARD TO DO SOME DAYS BUT WE ARE WORTH IT. I JUST TELL MYSELF THAT 24/7 AND SOMETIMES I STILL WANT TO GIVE UP. WE ARE ALL HERE FOR YOU AND EACH OTHER. ALWAYS REMEMBER THAT. HUGS TO ALL, JULIE

You're right, bearsjewel, we do have to fight for our right for proper medical care.

Doctors willing to listen to us and not just hear us are treasures. Those are the doctors who do help us or try to do the best for us given the medical knowledge thats available.

Pain is not only in our heads as we are prone to migraines, but its in our joints, as well. Dry eyes and Dry mouths also need to be addressed.

Here I go...gettin' on my soapbox...lol

You all understand what I mean so I'll stop before I start a torrential venting session!!

Hope you all are having a great weekend,

Sonni