Newbie and What the Heck Is Going On With Me?

[DeadGirl75]

Greetings everyone,

My name is Shelly and I was very recently diagnosed with Sjogren's. I'm so new, I'm still waiting for my initial consult with the rheumatologist. I can't get in until November and I feel like heck. For the longest time, I thought most of these symptoms were in my head because every time I told doctors of the extreme fatigue, they would push antidepressants. It wasn't until I found a lump in my neck and switched doctors, that I was sent for testing. A lip biopsy came back positive for stage 2 Sjogren's (I don't even know what that means because Google is no help)

The ENT put me on steroids and let me tell you, I felt so much better. The problem is, I'm out of steroids and the doctor won't refill them. I have an appointment to talk to him about it on Friday. I know steroids are bad, but I need something to help me function until I can see the rheumatologist. My face is swelling, my joints feel like I'm a 90-year-old woman instead of a 40-year-old woman. I have wedding to go to at the end of the month that I'm dreading if I can't get relief. Just taking a shower takes all the energy I have, let alone driving three hours to a wedding.

I've made a log of my symptoms and I hope this gives my family doctor some idea of what I'm dealing with.

Swelling parotid glands that get painful
Itchy spot on my palm that isn't a bug bite
Soreness at the base of the skull
Body aches
Headaches
Dry eyes, mouth, nose, vagina
Dry skin
Involuntary muscle spasms
Numbness and weakness in left hand (sporadic)
Tingling in feet
Itchy rashes on wrist
Fatigue after sleeping
Hard time falling asleep
Swelling of legs and feet
When laying in bed, body will jerk, legs, arms, feet
Feeling like something is crawling on me
Two bumps at the base of my skull and they feel sore or like I've been hit
Family history of rheumatoid arthritis

Thanks for letting me loose. If you have any advice for me, it would greatly be appreciated and if there are things I should bring up to my doctor, let me know?

~Shelly

[Joe S.]

Welcome to the forum. Sjogrens is not a death sentence. When you first get it it feels like it is. I suggest that you read "Spoon Theory" on the web. It does a good job of explaining good days and bad days.

Some of us fave posted what meds and supplements we take in our signature. Before you try any meds or supplements, check for counter indications, side effects and drug interactions.

when you learn how to manage your flairs you will do better.

[DeadGirl75]

Thank you! I will go look that up now. Honestly, it was just a relief to know I wasn't crazy!

[Carolina]

wow i remember those bumps at the base of my skull that hurt!   That was like a 'blast from the past'.

I have had all of those symptoms off and on all of my life.  Now I'm 74 and dealing with different stuff mostly.  I mean some things are the same, but some things are way worse.

Get a good doctor if you have to try 20, it's worth it.  Make lists, take someone with you to your appointments.  You have one diagnosis, which is one more than I had at age 40.

Talk to us, share with us, please.  You can get good help here.  I'm just tired right now, so will maybe add more later.

Hugs, and WELCOME!  Elaine

[DeadGirl75]

Thanks, Elaine.

You said you had those bumps, are they part of Sjogren's or was it something else? I haven't read any literature about them, so any insight would be great.

*Hugs* Nice to meet you!

[Tharrell]

Hi Deadgirl and welcome.
I came to reply on your muscle spasms, jerks and crawling feeling.
You may want to go to a neuromuscular specialist for that and get tested for anti vgkc, or voltage gated potassium channel. I have Isaac's syndrome which is another autoimmune disease. The Different forms, in order of progression, is benign fasciculation syndrome, benign cramp fasciculation syndrome, Isaac's syndrome and then morvan's syndrome.
My presenting symptoms for Isaac's are the following:
Fasciculation- all over my body, 24 hours a day, there are several areas constantly twitching and spasming. Sometimes it feels like a bag of worms rolling under my skin. You can actually see the waves run through the muscles.
Cramps: before I was started on meds for this I had several attacks of muscle cramps in calves, thighs, feet, hands, arms. All my electrolytes were always normal.
At night, when I try to relax i get major jerks where an arm or a leg just jumps. High enough to clear the mattress! One nap time, while I was lying on my side, I thought I heard somebody repeatedly knocking on the door. Then I realized it was my foot beating rapidly on the matress! I would be hard pressed to move my foot that fast on purpose!
My body is never quiet, it constantly moves and contracts, it's exhausting.
Everyone had hoped that after my thyroid was taken out that would stop. Unfortunately that didn't happen.
I'm far from saying you may have this, I only point it out as something to ask the neuro. This condition still get's very much overlooked and patients have actually been erroneously diagnosed with fibromyalgia!
Hope this helps!

[DeadGirl75]

Hi Deadgirl and welcome.
I came to reply on your muscle spasms, jerks and crawling feeling.
You may want to go to a neuromuscular specialist for that and get tested for anti vgkc, or voltage gated potassium channel. I have Isaac's syndrome which is another autoimmune disease. The Different forms, in order of progression, is benign fasciculation syndrome, benign cramp fasciculation syndrome, Isaac's syndrome and then morvan's syndrome.
My presenting symptoms for Isaac's are the following:
Fasciculation- all over my body, 24 hours a day, there are several areas constantly twitching and spasming. Sometimes it feels like a bag of worms rolling under my skin. You can actually see the waves run through the muscles.
Cramps: before I was started on meds for this I had several attacks of muscle cramps in calves, thighs, feet, hands, arms. All my electrolytes were always normal.
At night, when I try to relax i get major jerks where an arm or a leg just jumps. High enough to clear the mattress! One nap time, while I was lying on my side, I thought I heard somebody repeatedly knocking on the door. Then I realized it was my foot beating rapidly on the matress! I would be hard pressed to move my foot that fast on purpose!
My body is never quiet, it constantly moves and contracts, it's exhausting.
Everyone had hoped that after my thyroid was taken out that would stop. Unfortunately that didn't happen.
I'm far from saying you may have this, I only point it out as something to ask the neuro. This condition still get's very much overlooked and patients have actually been erroneously diagnosed with fibromyalgia!
Hope this helps!

OMG! Thank you for sharing! It's crazy how these symptoms overlap.  I'll make a note in my "symptom log" to talk to the doctor.

I've had those jerks where it feels like you clear the bed! It's like when you're falling in a dream and jerk awake or on the verge of sleeping and you jerk awake. I get charlie horses SO freaking easily. I initially thought my potassium was low, but when I took a supplement, it didn't work. It is so nice to know I'm not crazy. It drives me crazy having that feeling of things crawling on me.

[Steve]

Hello ladies,
           For those spasms , shakes and jerky motions I've been taking ropinirol and that has worked for me very well but that's the only symptom that ever got any better.

[Tharrell]

Hi Steve! I take roparinole for restless leg syndrome as well. I take 5 mg twice a day. It takes care of the crazy urge to move my legs! However it does nothing for my Isaac's syndrome. For that I am currently on phentoin, Dilantin. I started of with gabapentin which did nothing at 1200 mg a day and never mind I could not function at that dose. Next we tried topiramate. I wanted that one, because it would also treat my acephalgic migraines, which for me was 24/7 dizziness. It was great for the migraine, I still take it. In the beginning it helped with Isaac's, but then the symptoms got worse. Then we tried Dilantin which is currently working.
Deadgirl, I also tried magnesium, but it too has no effect.

[Bigleyj]

Hi Shelly.

My doctor only prescribes me steroids when I'm having a flare.

Your rheumy should give you scripts for other medication/s which (generally) reduce some of the Sjogrens symptoms.

Let us know how you go.

Where do you live?

Good luck, fingers crossed you will be feeling a bit better soon,
Jo 😀

[DeadGirl75]

Hi Shelly.

My doctor only prescribes me steroids when I'm having a flare.

Your rheumy should give you scripts for other medication/s which (generally) reduce some of the Sjogrens symptoms.

Let us know how you go.

Where do you live?

Good luck, fingers crossed you will be feeling a bit better soon,
Jo ?

Hi Jo! I'm in North Carolina. I'm on 5 mg of Prednisone until I see the rheumatologist in November. It does help quite a bit. I have a sneaking suspicion that I'll have Sjogren's secondary, as I have symptoms of other autoimmune disorders. Honestly, it's nice to know I'm not crazy.

[Deb 27]

DG, welcome to the forum. Sorry you have SJS and are suffering right now.  Your symptoms sound familiar. Yea, I've had some lumps on the back of my head too that were sore. I have so many symptoms, I don't even talk to the Dr about all of them.  Do you think you could go back to your primary care for at least some symptom relief?? Help for the pain or sleep?? I'd give it a try. I take plaquenil but that takes a long time to kick in. Another thought, call the rheumy's office and get on a cancellation list? Take care.

[DeadGirl75]

DG, welcome to the forum. Sorry you have SJS and are suffering right now.  Your symptoms sound familiar. Yea, I've had some lumps on the back of my head too that were sore. I have so many symptoms, I don't even talk to the Dr about all of them.  Do you think you could go back to your primary care for at least some symptom relief?? Help for the pain or sleep?? I'd give it a try. I take plaquenil but that takes a long time to kick in. Another thought, call the rheumy's office and get on a cancellation list? Take care.

Thanks. I did go back and he put me on a low dose of steroids until my appointment in November. I'm on Tylenol 3's for pain but I take otc sleep aids. It's a strange thing. I'm always so tired, but then when I can sleep, it's not restful. Also, I am on the cancellation list, but it's looking like that's not happening. I only have a few weeks left to go, so I think I can handle it. I 've made it this far, right?

I just wanted to say, thanks to each of you for posting. It really means a lot.

[irish]

There are lymph nodes on the back of our head and it is possible that your inflammation is causing them to swell. You do need to show them to the doctor though,. Sometimes these lymph nodes that swell cancome and go. Irish

[Pete0211]

Hi Shelly,

I'm in NC too, and though I haven't had the body aches and pains, I was hit with horrid dryness in July, spent two weeks of little sleep and food (and lots of water and internet searches for remedies) until my fourth ER trip led to an IV dose of steroids, then a prednisone pack. I too had a long wait for a rheumy appointment (on the coast), but as my condition didn't get better my primary care doc found an earlier availability with a highly rated rheumy in Chapel Hill.

Depending where you are in NC, you might find an earlier appointment with a rheumy in a larger city, but the downside can be it may will require travel (the travel was scary for me, as my appointment was still two months after my initial attack, and I was afraid to risk an overnight stay somewhere other than my familiar and well-stocked-for-dryness-remedies home).

Glad the steroids are working, and good luck to you. The one thing I learned is that even though Sjogren's isn't well known, there are some great resources (here and several blogs) that have a wealth of information. I used those sleepless nights to search the web and stock up on supplies for the dryness. Keep positive and have someone to talk with - and if you haven't found out yet, even with the driest of eyes tears still come up pretty quickly (though it came with a strange feeling in my eyes/tear ducts for me) - and as a bonus, when I did let go and cry my nose became runny, too (a welcome relief for a short moment to help with the dryness and give me an idea that my body still worked right sometimes!).

Pete