Hello everyone, I was wondering if any of you have had to give up work due to sjorgrens?
Hi Alfred.... I am still working but SS has definitely made things much more difficult though. Good discussion to start as I know we have a number of members that have had to stop working.
What kind of work do/did you do?
I am a vicar in the Church Of England. The fatigue makes everything so difficult. Brain fog is alarming and means I no longer feel able to hold my own in conversations and debates - I have 2 post graduate qualifications and I feel stupid. My voice is hoarse and I cough so much it makes leading services and preaching difficult, been off for over a year now.
I still work. However I did have to change jobs due to many aspects of my health. Good discussion topic. Looking forward to following this conversation.
I gave up working although at the time all I knew was that I was sick. I didn't have my Dxs yet. That was two years ago last month. Still waiting for a ruling from the SSA judge but hoping I hear from them before December when my long term disability benefits from work run out.
I work 2 jobs as both a therapist and as a rape crisis advocate. The fatigue is a killer. It helps that I sit a lot, LOL. Thankfully the brain fog hasn't been so bad lately but there are times when I can't find words, etc…. no good at all in either of my jobs. But, it was unnerving when it was happening. I go through phases with the chronic laryngitis too but also hasn't bothered me so much lately. Mostly grateful the docs seem to have me pretty well balanced right now.
I know now that I can't work. I just don't see how. The worst thing is the fatigue and brain fog. I'm doing better with medicine, but the fatigue still hits me sometimes...it's unpredictable and it's truly horrible when it happens. I was laid off from my last job, and then shortly after that is when I started getting sick. So I was never able to go back to work. There's no way I can manage it...unless I can find a job where they will let me take naps in a back room somewhere! And then I'd probably have to go home a lot because I will suddenly feel dizzy and get headaches. Add to that how I can't lift any heavy objects anymore because of weakness and joint pain. There's just no way. I've already gone through the whole nightmare once of trying to get disability, I even had a lawyer (who didn't help much) and I saw a judge. I was still denied. But that was before I was actually diagnosed and all the doctors said was that I likely had some sort of autoimmune disease. Now that I'm actually diagnosed with Sjogren's Syndrome and my condition has deteriorated to the point where I physically can't do the things that most jobs would require, I think I have a chance. I guess I'm going to have to start over again with a new application.
Hi Alfred. I also had to give up working. Going to get a lawyer this time also so hoping I am approved this time. I have ss and severe neuropathy in arms/hands and legs. I have a difficult enough time trying to take care of myself as well as my 2 girls ages 2 and 5. There is no job left that I can do frustrating and depressing yes but I know physically I just cannot work. Best of Luck!
Hi Alfred I’ve been off work awhile now I will want to eventually go back to work once I can get on the right medication but work will ill health retire me before I get a chance to get on an even Keal. I understand what your going through and how your feeling but only you can decide if to give up work but what’s more important your health or your job. Wishing you the best in whatever you decide. From Rita. Uk
Thank you all for your responses. It’s great to have a support group like this. I spend a lot of time trying not to think about stuff or talk about it because it feels so rubbish to have had such an active life and now to feel like I’m old before my time.
You're welcome! I know the feeling, feeling old before your time! It's nice to talk with people who truly understand what you're going through. Also great to have this support and advice.
I'm in NY and its kind of a given that disability denies the claim the first time around. I wish I knew why they feel the need to do that but they really put people through the ringer here before given them what they should have.If it helps any, I had the same horrible issues with brain fog, memory, keeping track of conversations and even being able to speak a full sentence. It got much much better. I know that insomnia and stress contribute to it. I also had a run with neuropathy so the neuro had me on Gralise (gabapentin) for a few months. That helped the brain fog a whole lot. I hope yours works it way through also. Plaquenil helped the fatigue also. Its not totally gone but its WAY more manageable these days.
Sorry to hear that. I think you have to keep fighting to try and get your disability recognised. I would never have thought of myself as disabled - but the reality is I am and I can’t do the things I used to do and lots of the things I want to do. Like Rita says if it comes to a choice - it’s just rubbish that we live in a world where lots of us don’t feel that we even have that choice. That’s why forums like this are so important. It’s really important to have somewhere to air thoughts and feelings. Work are sending me to an occupational health assessment on Monday and I’m hoping that will help move things on a bit. I feel like I’ve been stuck in limbo for a long time.
I have given up work in the last two years, But have worked all of my life except when my 3 children were born l I have been diagnosed with SS for 21 years I am 52 I am hoping to have a little job,, and next year plan to go back to work if I can just for two days per week as I have a degree and would like to make use of it still,
I worked in mental health a lot of travelling and very light work sitting at a computer,, meetings and so on,,, I worked full time,, now I know I cannot work full time any more,,but will love to do about 16 hours per week People with SS as the years roll on with it I could not stand for 8 hours or even two hours or do any heavy work, you need to have a job sitting most of the time to be able to cope
Great question. I had been a school administrator, instructional specialist, and then returned to the classroom teaching because I missed being with the students. The last year I transferred to a new school and suddenly found myself in danger of receiving an unsatisfactory evaluation! At the time I had no idea I was sick. I thought I had aged prematurely…Brain fog, problem with word retrieval, extreme fatigue and. Joint pain, as well as the whole dry mouth and difficulty talking and swallowing thing. Frankly, I would have given me an unsatisfactory rating had I been my administrator. I struggled through and decided to take early retirement. It was humiliating. A year later my opthamologist noticed me swilling water at an appointment for severe dry eyes and sent me for blood tests and then To a rheumatologist. I consider myself to be extremely lucky. I had a pension to fall back on and a brilliant opthamologist who knew I was very sick before I did! Having an autoimmune disease is a new reality that take courage and a new perspective on life. I feel bad for those of you who have to work in spite of this disease. I’d say the most important thing is to have moral support. Autoimmune diseases are invisible to the rest of the world. Having some in your workplace who understands is a great help.
I gave up work mainly due to memory problems, trouble concentrating, feeling anxious about the responsibility etc. I was a finance manager. I had a few months off and hAve started a new job now with less to remember. I do not have a SS diagnosis yet- waiting for a referral to a rheumatologist.