I just wanted to ask some opinions, and get different perspectives. Lately after working 2 days in a row, I have more severe facial pain, ontop of a brainfog that makes it hard to do anything. I currently have a physically demanding job where I lift about 40+ pounds, repeatedly moving all over, with extremely loud music. Last night my pain was worse, and today I am having trouble even thinking, like my brain is exhausted and can’t function well. We are considering moving closer to the Mayo Clinic area since this seems to be getting worse, I would like any advice as I reach out to my doctor. Thank you for reading this. I am considering looking for other work, but we also plan to move soon.
Working has been possibly my biggest struggle since diagnosis. I have been in near constant ATN crushing pain for 6+ years. (a few treatments gave good relief for a week or two but we’re not sustainable.) I have not been able to work full time in that entire time, and I have attempted 8 different part time positions and had to quit all of them do to exahstion and poor work performance after 3-8 months.
I currently work 12 hours a week in a self employed dog walking position, and even that is a struggle at the moment due to my medications loosing effectiveness and my pain levels rising.
I hope to start my fight for disability soon, because I just turned 30, and I can’t keep doing this, as it is just getting harder as I age.
I either need to not work inorder to control my energy levels and my environment to optimize for low as possible pain, or I need to get something for better pain control, and the only things left to try ante Implanted neruo stimulator, and ketemien infusions, 2 expirimenal treatments that also may not work.
I have the same issue where I reach a point of exahstion and overload where my brain just stops functioning and I start to make mistakes and slow down at work, and have much worse pain from stress and an uncontrollable environment (air movement and temperature are my worst pain increasing triggers)
I wish I had a good solution. I keep trying different job after job, reception, teaching, data entry from home, etc. And I simply can’t manage even 15-20 hours in any of them. Work from home was the best, but the specific company I was with had crazy high quotas for speed of work, and I couldn’t think fast enough to keep up. I really hope I can get some sort of disability aid over the next few years, but I expect it to be a hard fight.
Any chance you could go on disability? I did years ago because of my TN (since 1997) and the meds. I wasn’t able to form a coherent sentence, much less work in a challenging field. I hope that you’re able to get the help that you need. Stress about job performance can exacerbate your symptoms. I didn’t realize how much worse stress affects the tn until years later. I’m doing well on Botox injections every three months, and I’m continuing my Trileptal 600 mg twice a day…just in case. Life is better, despite the pandemic. I hope Mayo can help you. You’re fortunate to be near there. I finally saw a neurologist at UCLA who started me on Botox. I’d been to maybe 20 specialists in 20 years, maybe more. Take care.
Shannna, I’ve been fortunate to be able to stay home with my kids while my husband works, but it’s been tight financially, especially with all my medical bills. I have atypical TN on both sides. Crushing pain and burning every minute of the day. Some days it’s ok so I can still function. I was considering being a part-time substitute next year at my kids school. I can’t imagine returning back to full-time teaching though. Too much stress. I’m not sure what your qualifications are but that’s an easy job if the teacher has everything already prepared.You can look at districts that hire 2/3 positions. There also seem to be positions for costumer service openings that you can do from home if you search on the job websites. They set you up with everything and train you. Career builder was one of the sites I used. You can also teach English to overseas students. Most companies require teachers to have a bachelor’s degree in any field and to be native English speakers. They pay fairly well. I hope these suggestions help. I’ll be praying that you find something that works with your needs!
Shanna, knowing what the tn pain is like i can sympathize with you. It seems that you have the wrong job for your situation. I see that one of our members gave you some good advice so I won’t elaborate. I wish you all the luck. And I hope things will get better. Stay safe. Gloria
Thank you all for your helpful insights and comments, they are very appreciated, as is your time! I will be looking into a better job in the near future, there is definitely correlation between harder work days and pain levels.