Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

537 Members
1,886 Posts
0 Online
Muscles & Bones
/ Sjogren's Syndrome Support Group

Beginner

Stefunny25
Stefunny25

I recently got diagnosed with Sjogrens a few weeks ago, after a whole year of constant complaints of pain and fatigue. I also developed Piriformis Syndrome that has given me terrible sciatic pain. (still not sure if that's related). Im 25 yo so this all came as a shock to me. I have been reading everyone's posts and i'm feelin goptimistic that once i start taking Plaquenil that things will get better for me. It's been very hard this past year, and i've just gotten to a place where it's super hard for me to even make plans because I never know how i'm going to feel. PAIN everywhere. I've had issues with "dizziness/swaying sensation" as well, but that could be stemming from other factors. I've been anxious to try the Plaquenil but after reading everyone's posts its making me hopeful. This has been super hard thing for me to cope with, but i'm crossing my fingers this medication will help me get my life back! I never can/want to do anything anymore :( It's sad. Steps towards recovery here i come...

artwithin
artwithin
I am so sorry to hear that you have SS at such an early age. I was Dia when I was around 58 but probably had it longer. The meds do help that is for sure but sorry to say your Life will never be the same. You have to constantly tell yourself it could be worse but you still will hate it and learn to live with it ( I was ALWAYS a busy person with allot of energy no more) God always put someone in my path that has it way worse that I have it so that puts me back on track and I do what I can do and be thankful. I hope things get a little better for you at least now you know what you have and take steps to better yourself. I also take 5000mg of Vit d and multi vit and mag.
LadyBatman
LadyBatman
Hi,
The piriformis is a muscle that lays underneath the gluteal muscles in the buttock. The sciatic nerve can sit just underneath the piriformis, on top of it, or through it. If that muscle is tight, it can impinge the sciatic nerve, causing pain in the lower back and down the leg. I've included links to two pictures that show this. If you can find well educated massage therapist (specializing in deep tissue, sports massage, or medical massage) or a physical therapist, they can show you how to massage (to relax the muscle) and how to stretch it. You can also try heat in an attempt to relax the muscle. You'll want to apply the heat to the buttock, not the lower back, to specifically affect the piriformis muscle.

I hope this helps!
http://www.massagetoday.com/content/images/lowe02__1_1_6984.jpg http://jonaschiropractic.com/wp-content/uploads/2017/02/Sciatica-or-Piriformis.png
Tahlamoon
Tahlamoon
I am so sorry for your diagnoses. I am 50 now, diagnosed in 2014. I was in the best shape of my life, lifting weights and hoping to compete and taking Krav Maga hoping to teach one day. I so understand the reality of the life change. I hope that you have a good rheumatologist that listens to you. This is extremely important. I am on Plaquinel, Mobid for my joint inflammation and now Gabapentin for my nerve pain. I have very good days and with medication my bad days are not as bad. Life does change. We all have different symptom. Working with a good team of doctors will is essential. Good luck