Thanks for your video! It’s so maddening to have weird symptoms and when a doctor actually bothers to look into it they just say “I don’t know”. Wishing you and everyone here the best ❤

@livingwithsjogrensdisease1550

17 күн бұрын

Thank you for being here. I agree it's maddening when providers do that. Sometimes they just don't get definitive answeres from the various tests, and don't even agree with eachother. I'm greatful to have medical care. 💜💙🩵🩷

I get the little red dots and I thought it happened to every one until about 2 years ago.

@livingwithsjogrensdisease1550

11 ай бұрын

I guess even though Sjogren's presents as a similar Syndrome of symptoms, we all do vary in it. The rash always concerns me when it happens because rhumatologest told me the there's greater risk of lymphomas for those who get those rashes. Scares me some but try to remind myself that, "The battle belongs to the Lord" and "He will make a way for me". Of course that doesn't absolve me of my responsibilities to try. 😉. 🙏💜💙🩵

Yes I do I get it realy bad and deep down.

I don’t take any medication for Sjögren and have bruises coming from nowhere and a hair loss. Except my hair and a little bit of brows, I’m nearly hairless.

@livingwithsjogrensdisease1550

10 ай бұрын

Thank you moxanation for sharing. Medications have made me feel worse in some ways especially as the years have passed & my Sjogren's has progressed. I do take ibuprofen for the sinus & eye area pain. When it's flaring I end up taking a lot & more bruises pop up, take longer to heal. The methotrexate once/wk does make more of my hair fall out. But I also think other things contribute like menopause, decreasing estrogen levels with pre-menopause, vitamine deficencies, genetics & the autoimmune disease effects. It's such a bummer. Love & peace. 💜💙🩵✌️

Do you ever get electric type pain in different parts of your body? And what do I do about the horrible feeling I have in my whole torso?? And vaginal burning, constant piddling. I have so many symptoms I'm weary and hopeless.

@livingwithsjogrensdisease1550

9 ай бұрын

I do in my right & left temples sometimes. It's short lived. My only other lightning pain was 3 times: down my labia with each of my 2 pregnancies, ouch, and during 2012 spinal tap for MS testing, also.down left labia & horrid. I'm told by others that spinal damage and or pinched nerve could cause lightening pain in bottom, hips, and or down one or both legs. But I've never experienced this. I'm no longer an RN & not a provider it would be wrong of me to give medical diagnostic. But I feel good about giving supportive info & ideas. Spinal nerve issues can also lead to or cause bladder leaks but other health conditions can cause bladder leaking too. Its all overwhelming & mentally exhausting coping with the debilitating symptoms & pain. It's, I think, natural to slip into feelings of despare, questioning our purpose here when we are suffering so much. I bug my providers with short messages on patient portal, on phone, kind messages stating facts of what I'm experiencing. I include a question provoking a response such as, "What should I do" "what's causing this" or a statement such as " I'd like a referral to specialist to investogate this issue & hopefully prevent worsening damage". If no response I call with messages, go into walk in clinic & if severe I have gone to the ER. It's sad that we have to be the squeaky wheel. You deserve compassionate active care. My next video is about how chronic illness, autoimmune disease, affect menopause, Role hormones play, what goes wrong & what we can do about it. Still in planning, working on my knowledge & fact checking. But here's an easy read article about male & female hormones, affects, bennifits & problems. It's a great article. Will send in comment, k. 💜💙🩵

I have I and my right side of my body is in pain everyday of my life

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for sharing, so much pain is so hard to cope with, easy to lose hope. Bless you in all you do! 🙏

1:57 1:58 1:59

Do you ever start itching in no particular area. It’s only a short time but it does reoccur. It feels like a sting.

@livingwithsjogrensdisease1550

11 ай бұрын

Yes I do, forgot to mention that. Thank you for asking that question. When it persists I use ice pack, calm it down. Also keeping up a routine of moisturizing helps. I get in a hurry some times or feel too fatigued and don't get it done. Helps a lot though. 😊💜💙🩵

@marjanadidi1261

10 ай бұрын

I have itchy in my legs and hands

@livingwithsjogrensdisease1550

10 ай бұрын

Thank you for sharing. The itching is awful! I forgot to say about the itching. Mine's decreased by half since stopping plaquinill. Ice packs helped a lot. 💜💙🩵

@LadyKestrel23

17 күн бұрын

I also have fibromyalgia but I have periods where I itch. It will be a couple of places for a few second or minutes then it moves to other places. I do get spots that feel like chemical burns. Those seem to migrate around too but certain places seem to be where it happens more ❤

@livingwithsjogrensdisease1550

17 күн бұрын

@LadyKestrel23 Thanks for your comment. I get them too! It can be like a sudden bee sting or bug bite, and or like a hair just got plucked out, other times an irritation like something touching me or bug crawling on me but when I look nothing's there. If I keep messing with the spot it builds into a itching fest. So I have to try hard to shake it off. I don't always win that battle though, lol 💜💙🩵🩷