Post # 1
Sorry but i really need to vent and get some advice if you can offer any…. I’m struggling big time with my office job (court typist, but in an office – we have the sound & video beamed into us), have only recently gone back after taking four weeks leave because I’ve damaged my hands from too much typing. I’m still only working four hours a day but it has me totally beat… I am EXHAUSTED. I’m continually late in the morning because I’m just so foggy and fatigued, I had to stay home on Friday because I had a really bad flare and it’s only Tuesday and I have literally no idea how I’m going to get through the rest of this week.
The thing is… I’m developing severe anxiety because I’m paranoid about what work think of me for taking so many sick days or turning up late… it’s a fairly flexible environment where we just log on and off so I can work later in the afternoon to make up the time but it just seems like every time i have to ring my manager to call in sick or say I’m running late all I hear is “OMG not HER again”. Even if it’s not what they’re actually saying to me. I feel incredibly guilty about every single day I have to take off but there are some days where literally it’s my only option. I slept til 12.30 after I called in sick on Friday and it took me til the late afternoon to even get down the stairs at home (our bedroom is upstairs).
It’s like there’s this constant and competing dialogue in my head between me knowing I need to do what’s right for my body (and knowing I’m doing just that) and me freaking out about work think of me. It’s not healthy and it’s not helping!!!!
How on earth do you guys deal with it?!
I wish I could be like a normal person and just “suck it up” and go in but when I’m running on fumes 90% of the time, when I have a bad day or get sick there’s just nothing left in me to fight it. And don’t even get me started on fibro fog when I’m trying to type transcripts, it basically just becomes a jumble of words that I struggle to put into sentences 🙁
I wish I could work for myself so I could be flexible with my hours.
Post # 3
Hi there. I don’t have fibro, but I do have MS so I’m sure there’s some overlap in what we’re dealing with. I’ll ask a few questions but do not think I’m asking you to post your personal medical information here. I’m more throwing out a few things for your consideration. (Just a patient myself, not in the medical profession)
1. Have you discussed this with your rheumatologist? (Sorry if I have that wrong. It’s my understanding that they’re ususally the treating speciality for fibromyalgia) Have they put your diagnosis on paper? This may help if you have to bring it up to your employer.
2. Are you currently recieving any treatment, either for the fibro directly (like duloxetine) or symptomatically? I know with MS, there’s actually quite a lot in the arsenal to treat fatigue. It can take a while to hash out the pharmaceutical path that’s best for the individual, but neurologists are generally willing to try things like modafinil or even off-label ritilin. Obviously there’s a lot to consider here. I myself won’t take anything with a possible tolerence/addictive component.
3. If it becomes an area of stress, (wondering about your status or how you’re percieved at work) I’d personally be up front about it. However, this is a very personal decision. And if you have a HR department or a union rep, you might feel more comfortable clarifying your rights first. It sounds like your job might be one with good potential for making adjustments that suit your needs.
4. You do not just have to suck it up. These stresses and fatigue are real. I augment my disease treatment with regular counselling, and that’s helped quite a lot. Anxiety really just makes everything twice as bad. And we’re not talking the expensive stuff. Freebie from the MS society or students in training. It’s what I can afford, and frankly it’s a priority. Quality of life!
Post # 4
@Bette_Noire: thanks for replying! I think what’s adding to the stress is that both I and my GP have brought to work’s attention the issues I’ve been having and work have shown themselves entirely unwilling to acknowledge or do much about the situation. I actually worked for a different section of the same government dept on a year’s contract from about six months into my currebt job (when the RSI problems started… This is before I was diagnosed with fibro) and returned to current position in July – only took a month for my hands to start playing up again 🙁 the other section? We’re amazing. They took the time to listen, liaise with my GP, and got someone to cover me so I could cut back to 3 days a week (at the suggestion of my rheumatologist) and had backup if I needed a day off. I only had to text my manager and there were no questions asked. I had thought since that was a one-person role I was in, and in my current position there are TWENTY of us doing the same thing that they would be if not equally accommodating, at least able to show some appreciation for the situation but it’s a totally different scenario, unfortunately. The way they’ve dealt with it and the rsI situation (I’m still waiting on a workers insurance decision) has just caused me MORE stress, despite my GP warning of the dangers of stress! Ugh. Even she’s shocked at the response and bungling from them (like changing me to a manual time sheet based pay system… Then stuffing it up over a number of weeks so they ended up owing me $1500!)
Oh, and I’m on Lyrica and seeing a psychologist… both very helpful, but nothings really going to change my need to take time off based on how my symptoms are affecting me 🙁 in a way the frustration is all the greater because I feel I’m doing all I can right now. Psychologist did help me rationalise the paranoia a bit though… she helped me realise that because I spent my teens and early 20s forever being judged and criticised by my parents, it’s probably little wonder I think my managers are doing the same thing!!!!
Thanks for your reply 🙂
Post # 5
I live with chronic pain. I can relate to you. I feel exhausted a lot, and things that used to be simple aren’t anymore. I don’t know how I had so much energy in the past! I’m not able to work at the moment. The hope is that I will eventually be able to work part time from home doing computer graphics and editing, but fingers crossed. If you haven’t filed for SSDI yet, I’d highly reccommend getting the ball rolling if you can only work part time. It has been a long 2+ year battle for me that I am still in the midst of. Hugs.
Post # 6
- Wedding: October 2014 - Disney
I have secondary fibro to an autoimmune disorder. Pain management is importantm as pain causes fatigue. If you have a serotonin moderated form of the disease (most fibro is this) depression often comes with it and that has to be controlled too. Has your doctor considered electro physical therapy, or accupuncture for the pain? I only take gabepentin for my fibro issues but its because its due to a primary condition. You maybe a good canidate for something like cymbalta. Muscle relaxants may also help you at night I take them when I’m having numerous issues but I’ve been off for about a year now. Finally pain management is important so if these things dont work a pain reliever maybe a good option. I think celebrex is used in these cases and sometimes tramadol if that fails (Tramadol failed for me due to complex issues with multiple pain factors). I also drink a lot of caffeine and make sure that sleep is a priority. The fibro tends to give me limited issues unless the autoimmune issue (very similair to RA) acts up then the whole poop storm goes to hell and back.
Finally have to been checked for other disorders? RA? MS? Lupus? It is important to make sure you dont have an autoimmune issue on top of the fibro because if you dont control that you cant control the fibro when they come together.
Post # 7
Thanks everyone for the advice and support. I want to reply more fully in the morning but in the meantime does anyone have any strategies specifically for dealing with work and balancing your work commitments with your condition(s)? Especially if your work aren’t particularly accommodating? I’d appreciate it!
Post # 8
Another day, and more frustration. Got changed, got out of the house… but that took so much effort that I wasn’t even halfway to the train before I was contemplating curling up on the footpath and having a nap. By the time I finally got to work I was so exhausted my eyes were watering and I couldn’t think straight. And then I have four hours work ahead of me. It’s just not sustainable!
Honestly, i think I am on the right medication (I was put on lyrica after trial & error, including a very nasty spell on Cymbalta), the main problem is simply I’m wasting all my energy getting up and getting to work. My goal for 2014 is to find a job close to home that I can drive to, but sadly that’s a medium not a short term solution. The fact that my wrists are so bad probably doesn’t help because I’m expending energy fighting through the pain.
I just want to go home and hibernate until after Christmas. THis is no way to live 🙁