Hello everyone......thanks so much for adding me! I have been a member for a while, just have been soooo busy lately but I have so much going on health wise that I could really use some input.
I was dx with SS by lip bx on 4/22/16. Started on Plaquenil & Evoxac. I have been on & off on Plaquenil 3 times. I am currently off as it has finally been determined that I am allergic to it (rashes).....I am still on Evoxac. We went on vacation (beach) and while I did better at protecting myself (used sunscreen, avoided sun at peak times, etc....) I still got some sun. But I did not get a sunburn. As our vacation was winding down (the last couple days) I started feeling like I was getting the flu. Then after we were home and I was not out in the sun at all....I REALLY felt bad. Joint aches, muscle aches, SUPER fatigue, no fever. So I called my rheumy & had my appt moved up from Aug to this Mon (7/18). I am guessing the sun caused a flare??? Please note that my rheumy did not give me a whole lot of info on SS. What little I have gotten has been on the internet and y'all know how conflicting info on the internet is.....
And lately I have been experiencing.....occasional night sweats, legs and/or arms will jerk, strands of hairs are falling out really bad, tingling/burning in feet/toes, feels like bugs are biting me on my feet & legs but nothing is there. And of course the joint & muscle aches & the fatigue. As I have stated earlier I am not on any med for pain or fatigue. I have just been taking Advil.
When I started this autoimmune journey I was already on a mental health journey.....I have Bipolar Disorder, OCD, PTSD & Anxiety (social & generalized) and I was dx with Pars Planitis in both eyes last Sept. So lately I feel like I have been doing nothing but going to Dr offices.
Sorry this has turned into a novel lol. I am just curious for any ideas as to what anyone thinks I might be dealing with regarding my new symptoms.
BTW.....I am 42 years old and I take Topamax, Zoloft, Elavil, & Evoxac daily. And Vistaril & Klonopin on a PRN basis......my PRN meds I don't take them unless absolutely necessary.
Thanks so much in advance.....and I look forward to hearing fromback from y'all!!
Hi Lisa! A lot of what you are describing for your newer symptoms sound like they are nerve related, and yes, this can be a part of Sjogren's. Neurontin or Lyrica are commonly used to treat this, or should I say to control symptoms. That would need to be monitored by your psych med provider as well, as the Neurontin is also used for anxiety and may impact your psych meds.
I'm glad that your rheumatologist will be able to see you sooner. Sometimes it's a good thing for them to see us when we are at our worst.
Thanks so much for your reply.......at my last appt my rheumy mentioned PN. Hoping to discuss this in more detail on Monday. After re-reading my first post......andr looking at my phone, I see that I failed to mention a few more symptoms that I have been experiencing......I am currently keeping a list on my phone for my appt Monday so I don't forget. lol My mind lately, I swear I have lost some brain cells somewhere.....and A LOT of them. lol I just can't seem to remember things like I used to anymore.......
Anyway......despite being on Evoxac 3 times a day......I am still having trouble swallowing. I get strangled so easily. And I HATE when it happens in public. Everyone stares and have even had people ask if they could help me. I have social anxiety to begin with so drawing attention to myself is absolutely appalling to me!! I take small bites, sip while eating and chew very well but still get strangled easily. I have also noticed that I have been clumsy a lot lately. tripping a lot, losing my balance easily, dropping things, having a hard time opening things with my fingers/hands.
Don't know if any of this is even relevant. But they are changes that I have noticed and while all of these new symptoms don't happen all the time or even everyday, they have happened more than once and I consider them ongoing.
The tingling feeling, tripping, dropping things, etc are all possible signs of neuropathy which can be caused by SS. I have it too….thankfully its very well controlled with gabapentin. Brain fog is a sign of either that or a flair because fatigue makes it worse. I hate that one. LOL
As far as the sun causing a flair up, it absolutely can. Its a messed up thing. You just have to be careful and do the best you can to protect yourself.
I am sorry to hear you are dealing with so many things at once. I don't have too many issues with swallowing but I still have to eat slower than most people and be a little careful so i an relater to that one. It causes me stress so if you already have anxiety it must really be tough. Have you tried relaxation techniques? Corny but they really do help.
Its all relevant. LOL… SS is so weird. Its always been nice that I can pop on here with the weirdest thing and a bunch of people will answer Me Too!!!
Thanks for your reply......this autoimmune journey is all new to me. But I do know it is a long, frustrating & confusing journey. And I haven't been on it very long at all. lol I am very fortunate that I only went without a dx for 4.5 months. But I was sero-negative so I had to do the lip bx.......that was a NIGHTMARE!!!! But it got me a dx and it is behind me so I guess it was worth it.
Thanks again and hope you have a great rest of the day!\
I guess we all have some of the same symptoms, the tingling and feeling like something is bitting me just started when I didn’t take plaquenil for 2 days. Prayer for all of us. take care.