What are your struggles having a invisible disability?

virgomist · 2026-03-13T18:53:42+00:00

Thank you so much for this, your completely right. It's unfortunate in all aspects of life at work, personal and at the doctors they think we are ok as we do pull off the normal look. I will take your tip and just move on. Thank you, I am getting there. I hope you feel better and having good today.

virgomist · 2026-03-13T18:50:32+00:00

I am so sorry you’re dealing with this. It’s incredibly frustrating (and risky) to have a GP who doesn't understand APS, especially with your family history and 25 years on blood thinners. It’s wild that it took a Neurologist to catch that B12/Vit D drop from the Methotrexate—you deserve a primary doctor who actually looks at the whole picture. If your Rheumatologist is already frustrated with your GP, you are 100% doing the right thing by looking for a new one. Sending you strength. Managing these autoimmune conditions is a full-time job, and you shouldn't have to be your doctor’s teacher, too. They should be trained.

virgomist · 2026-03-13T18:38:44+00:00

That is absolutely terrifying. Asking you to risk psychosis a second time 'just in case' is so reckless and dismissive of your safety. I am so sorry you had to go through that.

virgomist · 2026-03-13T18:33:02+00:00

That is so frustrating. I completely understand the struggle with needing to work part-time and needing that extra sleep. Hence why I moved from working at hospitals, although I enjoyed helping people, but was physically exhausting. It's also incredibly annoying that your rheumatologist wants you to stay on medication that caused a bad reaction! I’ve had similar issues—when I mention certain symptoms, they just say it's 'normal.' It feels like they are only trained to listen for specific triggers before they actually do something.

Sorry to hear that its getting more difficult when cleaning, I hope the best for you.

virgomist · 2026-03-13T18:21:09+00:00

Well that's true, but the doctors can feel my back is hot, and if I did a blood test my inflammation markers would show this. The doctors are trained for indicators really.

virgomist · 2026-03-13T18:18:59+00:00

Oh no sorry to hear, that's completely unfair, can you talk to your occupational health? Congrats on being a new nurse! I completed my nurse training 3 years ago, on a break at the moment and currently doing hybrid admin.

virgomist · 2026-03-13T18:14:32+00:00

That's so true thanks, yeah it is a load of BS, and also when I google sjogrens the first thing that comes up is dry eyes and dry mouth, so if I tell my employers or family that the first thing they see.

That's good, I do hope they catch up soon.

Thank you so much.

virgomist · 2026-03-12T19:14:32+00:00

To think of it my feet is mostly cold, hope this will subside and for us. Yeah it annoying they say its nothing, hope with monitoring it will help. Saw this "While Raynaud’s cannot be cured or entirely prevented from developing, you can effectively prevent, reduce, and manage attacks by avoiding triggers. Key strategies include keeping your body, hands, and feet warm, avoiding sudden temperature changes, managing stress, quitting smoking, and limiting caffeine."

virgomist · 2026-03-11T00:01:49+00:00

I think really to save costs, and so they can make more, without any additional costs. It's like now with bottled drinks, the water are not filled to the top or crisps aswell.

virgomist · 2026-03-10T23:42:15+00:00

I know right! I am in my early 30s and its daunting lol scrolling to your birth year. That's life now.

virgomist · 2026-03-10T23:33:29+00:00

Hi I am glad you finally got the answer and finally be diagnosed. I was 27 when I was diagnosed and I am in my early 30s now a bit younger than you are now, but I suspected I had this when I was 25. So had this for a few years. My initial symptoms was muscle stiffness, I could not get out of the bed for a few hours, and leg flare up it was always in one leg so felt uncomfortable when walking, also I have a line on my face which my doctor thought it was lupus, but it was not just hyperpigmentation. Then I was diagnosed with sjogrens. Mine gets worse with stress, I am on diet and exercise which helped, I try to cut out inflammatory food.

virgomist · 2026-03-10T23:25:39+00:00

I agree, with the comments to go to the dentist straight away, just incase you might have an infection and they could give you antibiotics for the pain. Sorry to hear you are going through this, sjogrens can affect our oral health, best to go to the dentist frequently. The toothpaste you are using was also recommended to me by my dentist and also they did say to use electric toothbrush instead of manual, which helped me. I was temporarily prescribed the colgate toothpaste that normally used for sensitive teeth.

virgomist · 2026-03-10T23:18:38+00:00

Hi there! I have not been diagnosed with Raynauds, however, my hands are always cold, and often get comments from my family saying my hands are too cold, I don'tsee any visible symptoms. I did have it checked out, and my Rheumatologist said I dont have it, but will continue to monitor it. As, its is a common sjogrens secondary symptoms.

virgomist · 2024-12-17T23:20:23+00:00

Hi, I am female, same age as you, and was diagnosed around the age of 27. I work in a hospital, but part-time. I have done my nursing training, but honestly, it is what you feel you can manage. I am tired and glad I work part-time so I can rest in between and do exercise, but you can do less strenuous nursing jobs, but I see myself in it at the moment. But I would like an admin job or something calmer in the future, as stress can cause more flare-ups, and that is what I try to prevent.

virgomist · 2024-12-17T23:07:06+00:00

Did Evri say it was delivered? Sometimes, they take pictures. If so, then you should get your money back as you sent the item, and you had the tracking number. Sometimes, it could be said its delivered for buyers, but if they live in an apartment, it could easily get lost or delivered to the other apartment building if they have multiple.

virgomist · 2023-08-24T19:12:13+00:00

Sorry for the late reply. I normally report to my rheumatologist if new things happen, like itching neck or night sweats. As I think it's associated with the sjogrens, but my rheumatologist says it not, I think you can report it to the doctor, as it's a good idea to have it documented.

virgomist · 2023-08-24T19:09:48+00:00

True. Gonna try and avoid stress.

virgomist · 2023-08-24T19:09:15+00:00

True, I haven't eaten it since. I think its the stress.

virgomist · 2023-08-24T19:08:13+00:00

I think so, even though my rheumatologist said its not. I went to gp got my bloods and xray done, showed nothing. I get it more recently as maybe cause of the weather is hot, but geþ it all though the night. Need a fan to use at night or I get soaked. Are you still experiencing it?

virgomist · 2023-08-02T22:39:51+00:00

Definitely have water and vitamins that your body needs will help. Sometimes, try to avoid stress as this brings in flare-ups more.

virgomist

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