Struggling

I was diagnosed 4 years ago, and I am struggling so bad. There are not alot of Rheumatologist in my area to choose from and the one I was using would spend 2 minutes with me and never listen.

I am waiting on an appointment with the only one in our area that has good reviews and comes highly recommended. I am terrified that she will not here me out and at least try to help me. I am just not sure where I would go from there.

I have always been active. I was a cheerleader from age 5 all the way through high school. I have 2 boys and always worked full time and balanced work, sports, working out and never really thought twice about it. I was a single mom who and very strong and Independant. That is no longer who I can be and I am not coping well with that.

I push through everyday still working a full time job that is very demanding but is really my happy place. I am now 39 and kids are grown and I have a very understanding boyfriend that takes good care of me but feeling vulnerable is not my best quality.

All of the doctors say exercise and I know it would be good for me but I can barely get up in the mornings with 8-10 hours of sleep. My eyes hurt so bad from looking at my computer screen most of the day and when I get home I am not sleepy but feel like I have to concentrate just to move. By the end of a work week it is all I can do to make it to work.

My glands in my neck are constantly swollen. The one in the back of my neck is now hard and fixed and can always feel but will swell so bad. Last week that gland and all down my neck was the size of my fist. Last night, around my jaw and the glands in the front swelled so bad it was all distorted. I keep sinusitis. I really can’t remember the last time I went to the doctor and they weren’t swollen somewhere. Now the one under my left arm is swollen and I will have one in the middle of my breast bone. Constantly on Predinsone which makes me more bitty than I already stay because I’m so angry I feel bad all the time and don’t do much of anything fun anymore because on the weekends I have learned if I don’t rest, I won’t make it to work everyday the following week.

If I even drink one beer it will dry me out so bad I can not even use the restroom. The opposite of how that is supposed to work. My urine tests will show blood, protein, white blood cells …everything but everytime they culture it, no bacteria so no infection. Urologists and ultrasounds and everyone is like I dunno. Uribel works great for that though.

Due to all the swelling I had today I went to an urgent care

Sorry so long and didn’t mean to hit send, but I knew I needed a steroid shot. My Dr. Is closed on Fridays this is why I went there. Explained history and advised him all I needed was a steroid shot to get me through the weekend. He blatantly did not believe me, said “well you know a bad tooth can cause your glands to swell” Really? I have Sjogrens…that is common too, so he gave me a prescription for more predisone and an antibiotic not too mention my BP was elevated a little to 145/90, short of breath, sweating but wouldn’t acknowledge that. On my papers it had tooth infection for the antibiotic and notated I said I would follow up on appt. With Rheumatologist. Instead of putting the Rhuemys name which I told him was Machimada, my discharge papers said Dr. MOJO. Just thought that was rude but I was so upset he just didn’t want to hear what I was saying. I have been dealing with this ,I know my body, and then I broke down which I never do! What if I can’t find someone who really wants to acknowledge that my Sjogrens is effecting my entire body and not just dry eyes and mouth? I’m sooo tired. I am on Cymbalta as well which helps with muscle pain but I can’t function at this rate. I miss the me that always was.

I’m sorry it’s been so rough. Finding a good rheumatologist should help you get off of this merry go round. In the meantime, do what you can to take care of yourself, and keep reaching out for support.

Sounds like you're having a really rough time with all of the SjS symptoms. When you get an appt. with the new Rheumy, it might be an idea to go in prepared; it's often suggested on here to keep a symptoms journal, so that you can see what sets your symptoms off (if anything), and what you've found helps, or have tried and doesn't help. Take that in with you, so that you don't forget things when you're in with the doctor- I know I'm terrible with doctors, I get nervous and everything I wanted to say goes out the window! Also if you can find research/ info to back up your symptoms, then print some of that out and take with you to appts, or to A&E visits etc. as it will show doctors that you know what you're talking about, and might educate them a bit! Write down any questions you want to ask as well.

In the mean time hope that you can find support on here- at least people understand and it's a good place to vent! The past discussions can be useful for info- there have been discussions about swollen glands, and some tips on how to manage that which you might find helpful, although not sure if that's just the salivary glands.

Hi,
I feel just as you do in so many ways. I guess I just feel the loss of my prior healthy self.
When I was first diagnosed with SS and RA the doctors acted like it could all be managed and my life would be fairly normal. Maybe that was the case at the beginning in 2009 but both have worsened. Now I just stay home and very seldom go out…My doctors seem to listen but there is nothing they can do. Also people with a mild case really don’t know how bad it can get. I know two women that have it and there lives haven’t changed. It helps me to know there others out there like me.
I don’t wish this on anybody.

I think that is where I am having trouble accepting some of this, because I know there is nothing anyone can really do other than try to manage the symptoms. I have always been the girl trying to fix everyone’s problems, and I am the problem solver at work, and try to help everyone I can, and feel like now I can’t really help myself. I love my job so much but have thought about resigning because it seems to take a toll on me and I know we couldn’t afford to be without the money. Noone seems to understand except for people like you and thank you for that. I am blessed that the man in my life although he may not understand he let’s me have my bad days and gets me whatever he can to try to make it better. Never had that before so it does help too. Guess we just keep pushing through day by day

I’m sorry you are feeling so bad. I have my good and my bad days. My biggest problem is fatigue. I’ve never felt so exhausted before. I used to be very active too! Now I work PT. Its not strenuous so I’m able to put in 18 hours a week at a desk. I was out on sick leave from my night PT job because it involves standing and I’m unable to do that for any long period of time. Had to cancel my gym membership. I know this stinks. But it could be a lot worse! I hear and see other people’s health problems, (working for a doctor) and I realize it could be much worse. As far as your rheumatologist, I’ve had the same problem with one who can’t/doesn’t want to help. I’m seeing a new one on Friday and hoping to get some answers and the help I need. Good luck and God bless.

Hi again,
We are lucky to have a forum that at least we can vent. Today I did a stretching tape and made a cheesecake. Then I took an hour nap. My kitties are settled for the night and I love to read and do some bedtime yoga. Sleep well everyone.

Thank you so much for sharing your stories. I hope that things are improving. I have an app. for a complete physical in a week. I wonder how the dr. will address SS, and what she can offer. I will let you know. I do not go back to the rheumatologist until January. Do you know how long it takes for prescriptions to kick in to help some of the symptoms? I have been on them for almost a month, and they actually seem to be making things worse, ie vision, sweats, soreness, fatigue, etc. I am also so very tired. Yes, I know, "Can I get some cheese with that whine?" haha

The only thing that has made me feel better immediately are steroids but then I become so irritable I’m hard to live with Lol. I have recently started taking a Turmeric Curcumin Supplements and that actually seems to be helping a good bit with a daily vitamin. Nothing seems to help the fatigue though and that seems to be the worst thing for me because I hate I never feel like doing anything!

Hi,

Today I was reading an article on Rheumatologists.org about the connection between periodontal disease (PD) and RA and it seems that PD can worsen RA and decrease sensitivity to treatments for our RA. I hate going to dentists because I have TMJ and horrible teeth… I!m having some extractions tomorrow… I can floss, water pick and brush and my teeth still just decay.

I will post this as a separate topic.

Also I have heard about the turmeric supplements but I take to many already it seems overwhelming.



Kquixtar said:

Hi,
Today I was reading an article on Rheumatologists.org about the connection between periodontal disease (PD) and RA and it seems that PD can worsen RA and decrease sensitivity to treatments for our RA. I hate going to dentists because I have TMJ and horrible teeth.. I!m having some extractions tomorrow.. I can floss, water pick and brush and my teeth still just decay.
I will post this as a separate topic.
Also I have heard about the turmeric supplements but I take to many already it seems overwhelming.

The best of luck. I am having trouble with the glands under my armpits. They are so sore and achy like a tough workout, but I know that is not the case, as I am so stagnant right now. I started taking a senior yoga and strengthening class though a rec center. I felt that I did not overdue it, and was not too sore the next day. I am 51, so I looked a bit out of place. I am also going to take a swim class for RA at the same rec center. I will keep you posted. Good Luck pz

I have TMJ and horrible teeth as well with PD. I spend so much time on my dental hygiene and still have PD problems. I have had root scouring and scrapins of my entire moth 2x's within the lat 3 years. Trust me, for someone with TMJ it wa not pleasant. I wish you the best of luck tomorrow with the extractions, and hope to hear good news. PZ

pz48 said:



Kquixtar said:

Hi,
Today I was reading an article on Rheumatologists.org about the connection between periodontal disease (PD) and RA and it seems that PD can worsen RA and decrease sensitivity to treatments for our RA. I hate going to dentists because I have TMJ and horrible teeth.. I!m having some extractions tomorrow.. I can floss, water pick and brush and my teeth still just decay.
I will post this as a separate topic.
Also I have heard about the turmeric supplements but I take to many already it seems overwhelming.

Turmeric studies for Sjogren’s has reduced symptoms from 45-70% and has even resulted in ANA panels showing normal so thought this one was worth a try. You do have to becareful if youre on some meds because it can thin your blood, but for the first time my eyes are not killing me when I get off of work.

Is there a particular brand you use? I will consult with my doctor but he usually says it’s OK.

Look forward to hearing from you. I need some help badly.
PZ. I will let you know how it goes with the extractions tomorrow.

I'm sorry that you are having a rough time. Hope it helps to know you're not alone! I wanted to mention that a few months ago fatigue and pain causing me to not be able to sleep through the night were my main complaints. I sought help from a functional medicine practitioner that, among other things, did food sensitivity testing (different than food allergies.) My new diet has completely taken away my fatigue and pain! I know it may not work for everyone but I had to mention it since it gave me my life back.