Hi, everyone. My name is Michelle, I'm 22, and I have been suffering with Sjogren's Syndrome for at least 7 years. I was finally diagnosed just this past Monday.
My issue is that my rheumatologist decided not to put me on any medicine. The eye doctor gave me Restasis, so he thinks that is fine. (I'm okay with that for now). I just got diagnosed with restless legs syndrome, so he is waiting until after treatment for that to address my fatigue. Fatigue is my VERY WORST symptom and I don't think that treating my RLS is going to do much. Yes, I may get more sleep, but I don't think that not sleeping is necessarily causing my "chained down to the couch" feeling or my "walking with weights on my legs and arms" feeling EVERY DAY.
As for my joint pain, he isn't even convinced that it's coming from the Sjogren's. Which I think is just silly, because there was nothing on my bloodwork to indicate that Sjogren's is secondary to anything else. He said "SOMETIMES people with Sjogren's experience joint pain, but not many people do". PFFT. Please.
Anyway, he is sending me to physical therapy for my knees, hips, right ankle (tendonitis and ?), and neck (Desiccated discs). He's giving me cortisone injections in my knees. He's also doing a full body bone scan on me.
I'm just wondering first of all WHY he didn't put me on any medicine for this. I will say, I have tried Plaquenil before as my old doctor thought that I had RA. It did not do anything for me. I think that my rheumatologist doesn't want to try anything "more aggressive" than Plaquenil until we try all of these other things.
I do have other symptoms, terrible brain fog, dry mouth, tooth decay, itchy skin, leg pain (muscle pain?) and more.
I guess what I want to know from you all is what other treatments have you been put on? Have you used immunosuppressants for Sjogren's? Did they work? Is there any other route I can take other than the Plaquenil? Am I doomed for life to never be able to work again? Thanks in advance for any answers and I hope you're all having a good day today!!
G'day MeShell and welcome to the forum. Sorry you are having such a time of it. I am glad you found us. You will find that the people here are compassionate and understand what you are going through. Be sure you peruse the archived posts. You will find a lot of helpful information in them.
Sjogren's is a very sneaky disease. It affects all of us in different ways and to different degrees.
Unfortunately, there is no magic bullet in treating this disease. What works for some, will not work for others. You need to work with your doctor in finding what works best for you.
Be educated. Learn all you can about this disease. When you next see your doctor, bring a written list of questions about your concerns. Be sure to write down your doctors answers. Don't be afraid to ask for a second opinion on your treatment options.
Yes there are a variety of medications you can be offered. But you should talk them over with your doctor. Each one has its draw back.
You asked about being able to work again? That is something you will need to do a personal assessment on. Have you checked with SSI? You may want to eventually file for a disability.
Lastly here's medications I use to help control my symptoms: Plaquenil, Methotrexate, Savella, sometimes Prednisone. For my eyes I use Systane. For added pain relief I use aleve.
I hope you start feeling better soon. Take care
Seeker
Thanks for the reply, Seeker. I will definitely read some more posts on here. I've already done that a bit, but can only do it in spurts due to brain fog. I have looked up some things about SSI... I would so rather be able to work again than have to get on disability. So honestly, I don't want to even start applying for that yet. I would rather get on some treatments, see if it helps, etc, first. It may be VERY wishful thinking, but I have hope that I will someday work again.
I have tried savella as well, that didn't do anything for me either. I actually asked my doctor if he would put me on prednisone, as I am not doing the physical therapy or cortisone shots until January (going home for 20 days for the holidays, won't be around) and he seriously told me that "Steroids are what we're gonna put in your knees, maybe some will leak out." HA!!! Does he think I'm a moron or what? Besides, I have a whole month before I can even start that, so why not try prednisone now? Grr. Anyway, sorry for the rant, I just don't have the best luck with doctors, it seems. I am confident that in February when I have my followup with him that he might get his stuff together and start taking me seriously... I will try my best to make sure that happens.
MeShell
Sjogrens Welcome
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.
Thank you for all of the tips, Joe, you have been very helpful.
Hello, it is nice to meet you! Welcome.
I have had sjogrens since I was your age (or younger), yet I wasn't diagnosed until this year. I was in a terrible state for many months in a huge flare. I really thought I was going to die. I couldn't get off the couch. I felt awful in every way--very dry, dizzy, tendonitis in my elbows, horrible fatigue, pain in my hands, muscle pain, weak limb muscles, insomnia, plus much more!
Nine months later, I am turning a corner. Fatigue is much better and most of my symptoms are minimal on plaquenil and methotrexate. I am a stay at home mom right now, but I am good enough that I know I could go back to work. Don't give up hope, my friend. Everyone's sjogrens is different, but keep trying. If you doctor isn't giving you options then find another one. Hope you get feeling better soon.
For sure, at least for me, stay out of the sun. Wear 50 SPF every day on all exposed skin. Where hats everywhere. I also bought a UV protection umbrella for when I have to be in the sun. The sun always gives me flares and brings on bad fatigue and other nonsense.
Big hugs to you! The good news is that now you know what is going on, and you can start getting better.
Thanks for the response, Ark mom. I definitely know what you mean about most of your symptoms. I can't believe the amount of fatigue that I have. I'm so glad that you're doing better than you were. That is really good to hear, not only for you, but it gives me some hope as well. And sooo great that you say you would be able to go back to work! That must be an incredible feeling. And with you being a stay at home Mom, I know you are very busy at home so I'm sure it was very hard when you were at your worst.
I didn't know that my fatigue from the sun was related to Sjogren's at all. But now that you mention it, I know what you mean!
I am definitely excited to get a diagnosis. To some people it sounds funny, but they don't understand what it's like to go for YEARS without knowing what it is, and then to finally find out it's something that's treatable! And it's great to prove that it's NOT all in my head like some people have thought. Best wishes to you in your journey of treatment, hoping that you keep on trucking around that corner you're turning!!
-MeShell
Good morning all. I was a member here briefly a year or so back but got so frustrated dealing with unknown and ever changing diagnoses for my issues I just took the meds my rheumy gave me and pretended I wasn't sick. I really did feel much better for almost 9 months. Have been diagnosed off and on since a small child with RA but new rheumy treated me also for suspected Sjogrens. Fast forward to a couple months ago when I hit a brick wall - namely horrible fatigue! My RA is mostly in my feet and is asymmetrical. I had a schirmer test last year and it was a 5. My rf has been positive for a while and sed rate is usually a bit high. I have now had to close my law practice and have started the paperwork gathering to apply for disability due to my difficulty with continual pain when walking and due to fatigue.
I just had blood work and urine labs and had all kinds of stuff show up that hadn't before, including pos ssb but neg Ana and ssa. Rf was neg for first time in a couple years...weird. My c4 comp is low but c3 is fine. Other results are low uric acid, urine bilirubin, rbcs in urine and protein. Sound familiar to anyone? Starting methotrexate today and very nervous about it but plaq no longer working.
I know this was rambling but I'm a little freaked out about the sudden escalation of symptoms. Dry mouth and eyes also worse recently. A flare? I've never had one in all these years. Either slow worsening or remained stable up till now. Suggestions?
Stick gal, I am no expert (certainly not a doctor), but it sounds to me like you do have Sjogren's syndrome. But it can be a secondary condition to something else, like RA. A high rheumatoid factor can be associated with many different auto immune diseases (like Sjogren's) as well as RA. A high Sed rate is associated with RA, I'm not sure about anything else. But remember that just because your ANA and SSA are negative does not mean that you don't have Sjogren's. My ANA is negative as well. Actually, I don't even know if I had an SSA and SSB test before I was diagnosed, all I remember having is a high rheumatoid factor. So I guess I got what you call a seronegative diagnosis, meaning the tests were negative but I still have Sjogren's Syndrome.
Anyway, there is other testing if you're still not sure you have Sjogren's. Have you talked about doing a lip biopsy? I know I've read about people doing that for a diagnosis. Also, I never even did a Schirmer test, the opthamologist just looked at my eyes through a ... I don't remember what it's called a slit scope or something like that... and told me that I have a very thin tear film.
Sorry for rambling, just trying to help you out a little. Hope I did.
Thanks MeShell. I appreciate the concern. It does help.