New member!

[jmr804]

Hi all!
      Like many of you, I have a long complicated history that led me to Sjogren's. It started almost 10 years ago when I was bit by a tick. Fast forward 9 months and I'm on crutches 75% of the time because of severe pain in my lower joints. 6 months later I was finally diagnosed with Lyme Disease after seeing many, many specialists. After a 2 month stint on Plaquenil (in amounts that were definitely inappropriate for an 11 year old), I was pain free and able to live my life.
      Then, two years ago I began to feel pain that felt almost exactly like my Lyme flare ups. I ignored it. When I began my freshman year of college the pain only got worse. When I had had Lyme Disease, the pain was only in my lower joints but I was lucky enough to also get it in my shoulders, elbows, wrists and fingers. Then the fatigue began. No amount of sleep or caffeine could keep me from dozing in my 10 AM psych lecture. When the stress of school increased, so did my pain. My grades were awful and I couldn't find the motivation to get out of bed. Everyone said that it was normal teenager/ college student tiredness. No one believed me when I said it was more.
      That summer (a year ago), I went to a rheumatologist. After some blood tests, they told me I had the genetic marker HLAB 27 which means I'm more likely to have autoimmune diseases. This was news to me. Being adopted, I don't know much about my biological family's medical history so I've learned to prepare for curveballs at every doctor's appointment. Then they told me I had Sjogren's Syndrome. At first I was terrified. Then they said that it usually just causes dry eyes and dry mouth and sometimes joint pain. This didn't seem too terrible to me. My doctor said that my Lyme Disease had likely triggered the early onset of my Sjogren's. They said they could put me on medication that would help with the inflammation and that would be the end of that. I was pretty happy to hear that there was an "easy fix". Boy, was I wrong.
      Back on Plaquenil I went. The joint pain went away and I felt really good. Then the school year began and the joint pain and fatigue returned. Stress--> Pain--> More stress. I went back to a rheumatologist and they told me to try to be less stressed. I was taking 18 credits and working 2 jobs and planning a conference. That was not going to happen. I made it through this past year by sleeping as much as I could and pushing myself way too hard. I'm really lucky that my school has amazing disability services or my pain would have gotten in the way. There were days I couldn't walk or write which makes being a student a little challenging. I'm so proud of myself for accomplishing all that I did despite the obstacles I had to face.
      The fatigue didn't end when finals/ stress did. I can sleep 15 hours a day, which I do on my days off. I am able to force myself out of bed to go to work but it's miserable. The tiredness makes it so hard to get things done which makes me feel useless and I experience a decent amount of self loathing every now and then. I decided to do a little more research on Sjogren's. I figured either there was something else wrong with me or there was more to it than I thought. I don't experience dry eyes and my mild dry mouth just causes me to drink a lot of water which isn't a bad thing. I realized about 2 years ago that I was much more sensitive to the sun than I had been when I was younger. I didn't know what caused the change but I didn't worry about it too much. Just yesterday I learned that it was because of my Sjogren's. I also discovered this forum which I am pretty excited about.
      Sorry for the long post, it felt good to type though. Is there anyone else here who was diagnosed at a young age? If so, have your symptoms worsened at all since then?

Thanks 

[Scottietottie]

Hi jmr804 

Welcome to Sjogren's world.

The youngest member we ever had in here was 4 (well - her Mom posted) and we had a nine year old who used to post. Although the majority are older - many took years to get a diagnoses - and SjS can apparently strike at any age!

You certainly seem to be having a rough time of it. Lyme Disease is tough to get rid of.

I hope you find this forum useful. We're a friendly bunch!

Take care - Scottie 

[JoanElizabeth]

I am about the same age as you! I am so excited to find someone close to my age, I feel like such a baby here. I read a study that pediatric case of sjogren's tend to start out with pretty mild sicca symptoms (dry eyes/dry mouth). I have some what of a dry mouth but only in like the last 6 months and like you I just drink more water to deal with it. It seems rather mild in terms of dry mouth issues. I havve also had joint pain for about 10 years. It is definitely hard to balance college and this disease. I seem to have some major flare up of health crisis every finals week!

[Carolina]

Welcome JMR. 

Sjogren's tended to be an illness of women of 'a certain age' (over 40) in the past.  I think now that doctors are more aware of autoimmune illnesses and can test for them, there will be more and more younger people as well as men, who are diagnosed.

I believe that in the past it was mature women who persisted in seeking a diagnosis after being dismissed, and that younger people and men just 'sucked it up' and went without diagnosis.  But I could be wrong, of course.  I often am.   

And of course the true awareness of autoimmune conditions and tests to diagnose them haven't been around all that long.
Just think of all the people who suffered with no diagnosis and no possible treatments!   

I, for one, would not have survived infancy in the era before antibiotics.  So here I am at 74, with a host of 'conditions' which seem to keep adding up, but I'm having a wonderful life in so many ways.  I can't complain (but of course, sometimes I do!).

JMR, are you still on Plaquenil?  Because Plaquenil also causes sun sensitivity.

Hydroxychloroquine may cause you to become sunburned more easily. Avoid the sun, sunlamps, or tanning booths until you know how you react to hydroxychloroquine. Use a sunscreen or wear protective clothing if you must be outside for more than a short time.

https://www.drugs.com/cdi/hydroxychloroquine.html

I find that all of my life, if I did anything 'stressful' I wound up sick/miserable/in pain.  That's because my Immune Disorder leaves me with no reserves.  Even retired, I have so much trouble when I have more than two things to do a day.
So I hope that you find as many way to manage your conditions, JMR, as possible.  New treatments are being developed all the time, and perhaps there will be a good treatment for you.

I know that the long lasting effects of Lyme Disease are finally being recognized by the medical profession.

One of the worst experiences in knowing there's something wrong and having all the medical professionals dismiss you.

Take what you need here.  We are very supportive and patient.

Hugs,  Elaine

[Kathy57]

Welcome JMR804,

It sounds like you had a long road to diagnosis.  Sorry you had to find us but you will find a really good group of people here with lots of great advice!  When I was "new and struggling" everyone came to my aid here.  Don't know what I would have done without the help and support, because I didn't know a single soul with this illness until I joined.

What a relief to find out that I wasn't even close to being "alone".  I know we have some young people here but I'm not one of them.  Lol.  I'm sure they will "chime in."  😃

Again, welcome. 

Kathy

[SjoDry]

Hi Jmr804,

Sorry to have to welcome you into a club that you didn't choose to join. I am glad that you found the forum, there is great info & support here. Taking advantage of your 504 opportunities at the college (as you have discovered) will absolutely be necessary throughout your time there. It is unfortunate that SS has intruded into your life at this age/stage of your life. Def hard to handle and the fatigue is beyond words for many of us. I was drinking 2 energy drinks a day up until a month ago (and one of those was a jumbo can).

I wanted to mention a couple of things to you. There is a great book you may be interested in reading: The Sjogren's Book by Dr. Daniel Wallace. It is very thorough and addresses how SS manifests in all of your body systems/organs. Between that book & this forum, that is where all of my SS knowledge came from. Very helpful. You may not have any control of how SS affects you, but at least it helps to know what to possibly expect or identify what may already be happening that you did not know was SS. You may wish to check out the Sjogren's Syndrome Foundation site or join. They have a good monthly publication. Once a year they have a very well done patient conference, typically with attendance between 400-500 people/patients and all the leading SS docs in the country.

For both you and Joan Elizabeth, there is an Under 40 Sjogren's Syndrome Group. The leader is a friend of mine (who is mid 20's)  Paula Sosin. Paula lives in NYC.  You may call her at: (301) 538-3422 or write to her at: pbs@udel.edu    Paula has periodic group meetings by way of Skype or FT. Tell her Sandy/SjoDry in Pittsburgh referred you.

I will tell you that one of the most important things that you will need to do for yourself is to become a strong advocate for yourself (both with docs & teachers, etc.). It is not uncommon to find docs who know little about SS. You may have to go through a few before finding the right fit. It sounds like your doc is treating you and has an awareness of SS. That's good. Diagnosis for most people can be from 5 to 8 years and beyond. So many of us may have had symptoms for years but not identified it as SS.

One of the challenges of Dx is that there are what I call, "now you see em, now you don't" symptoms and symptoms that people talk away...(Oh, air conditioning always dries me out). Docs tend to look at the symptoms before them & not put the whole picture together (at least that has been my experience).  Not sure where you are located, but you might want to check out the Sjogren's Syndrome Foundation site to see if there is a SS support group in your area. I run a SS support group here in Pittsburgh. I have some younger folks in my group. And the one thing I will say is that my group (now in it's 3rd year) has grown so much. I now have over 100 people on my mailing list. The point being...SS is being diagnosed more (especially with the new physician guidelines), so you may be more likely to meet younger Sjoggies in a support group as more Sjoggies are identified. Just a thought.

The reality is that Sjogren's sucks no matter how old you are. Sjogren's is an equal opportunity attacker.

Glad you found us. Feel free to ask questions, get support or be a lurker...whatever works.

Take Care.
SjoDry