I can't take this much longer!
Posted , 7 users are following.
I have changes consistent with Sjogren's, along with Hashimoto's thyroiditis, and burning mouth syndrome. I am 66, a widow on my own and I am so fatiqued, depressed and in constant pain which is in my lower lip. My mouth doesn't feel like it's mine anymore. I don't have thrush, I am taking Pilocarpine to help me salivate and I can't even cry with tears. The worst part is not only the pain but the fact that everything sticks to my teeth so I am always flossing and rinsing with water. I also keep spitting up water and other liquids, but not food. My doctor thinks I have reflux but I don't have heartburn. Even if I did, one can only take Prilosec or Previcid for no longer than 14 days, so after that then what? Does anyone else have a problem with spitting up liquids? My joints in my thumbs are so painful and a thumb brace doesn't help. I can barely open anything. I also have terrible joint pain where my large leg bone meets near my butt. It is painful to sit or even walk. However, the greatest pain is in my mouth as I also have facial neuopathy. I don't know why I am even here anymore. I just want to sleep forever. Blessings to all of you, donna
0 likes, 25 replies
chris08587 donna57006
Posted
hi Donna, i have only been diagnosed since april of 2017, so rather new to this, but i have had weeks and some months almost symptom free. I tend to start to flare up if im not sleeping or something stressfull happens. i eat pretty healthy, but havent yet had to make any dietary, significant changes. i take plaquinil and vitamins and antidepressant and sleep meds. for awhile i was only getting 1-3 hours. thankfully dr. uped the med and i am getting 7-8. not necissarily my life plan, but its helping me greatly in order to get stronger. so for me, i have had periods symtom free and expect to have many more. there are some who occasionally are able to visit the site that share that they have been symptom free for years. I hope this gives you hope. I know how horrible symptoms can be. sending lots of positive thoughts your way and to all on this site
donna57006 chris08587
Posted
Hi Chris, thank you for your comment. I have never been symptom free mostly in my lower lip. Yes, I do have facial neuropathy which is most likely what is causing the terrible pain. I am on pills to help me sleep and I will not take plaquinil due to the side effects. I take vitamins and try to eat gluten free. Most of this is from nerve damage but it continues to get worse with aging and with oncoming autoimmune diseases. Blessings, donna
loonsd donna57006
Posted
I hope today was a better day for you. I know lyrica, cumbalta or gabapentin are medications used for neuropathy in your extremities. I wonder if it could help facial neuropathy? You probably are already on e but mention it just in case.
donna57006 loonsd
Posted
I have already tried all of the meds you mentioned and I do have facial neuropathy. Nothing has helped and the meds make my mouth even drier. Blessings, donna
loonsd donna57006
Posted
I am sending healing energy to you. I wish we had suggestions to help you. I do find it helps to know you are not alone. Sjogren's does like to kick our butts. Chatting to others and reading conversations helps me. We are all here for you.
chris08587 donna57006
Posted
hi Donna, i fully understand your misgivings about taking plaquinil, but id encourage you to reconsider. i read all about it and was very unsure if i would take it because of the side effects. i thought and prayed about it and decided to give it a shot. i take 200 ml a day. since you are absolutely miserable i would seriously consider plaquinil. just something to think about. for me the only possible side effect i may have had was thinning hair, but now my hair is normal. i have taken it now for a year and a half. hope you feel better soon
donna57006 chris08587
Posted
Thank you Chris, but the pain is in my lower lip and the pain is mostly from nerve damage. I did so much research on plaquenil and it really doesn't treat the nerve damage I have. Blessings, donna
chris08587 donna57006
Posted
thanks for your response Donna. reasons for not taking plaquinil cuz of your lip makes sense. i know that is the primary of your pain. i thought you wrote that you were also having significant joint/ bone pain. is your pain from a lip biopsy to test for ss? thought i may have read that from earlier posts. sending good thoughts your way.
donna57006 chris08587
Posted
Hi Chris, sorry so late, but I can't always get on my computer. I do have joint/bone pain but it takes a back seat to the pain in my lower lip. No the pain is not from the lip biopsy although it was very painful at the time. I did heal from that and two biopsies were done because a blood test for Sjogren's was negative for antibodies in my blood. My dermatologist/surgeon did one on the L side and one on the R. side of lower lip. I could smell the burning skin. The first test came back negative for antibodies. The second test came back positive: It read changes consistent with Sjogren's. I also have Hashimoto's thyroiditis, which I found out in August of 2016 when my lips swelled three times their size. This happened three months in a row and I found out I had angioedema; an allergic reaction which causes swelling from Lisinopril the high blood pressure medication I was taking for 8 years. My thyroid is still okay but it does cause joint pain, chronic fatigue, brittle nails and hair. It causes my skin to be dry as well. It was right after that when my lips became extremely dry and no balm would help and then I started getting dry eyes. Between Sjogren's and Hashimoto's, plus my age, I will be 67 this December, I seem to be fighting a battle I can't win as there are too many factors going against me. The burning mouth syndrome is another situation that causes extreme pain to my lower lip and tip of tongue. Blessings and hugs, donna