I would like to say thank you to everyone that discusses their personal experiences in living with pain. I visit this website seeking compassion, empathy and medical care. I do not normally say hello or include myself in discussions or the chat rooms. I have found that reading others comments has helped tremendously. However, I am currently in a funk.
This past year, I was always late for work. Despite all efforts made, I was always running late. Mornings are a really rough time, for me. Waking up involves dealing with extreme pain. Once I am up and moving, I feel better. It just takes a lot to get to that point. Does anyone else experience this? I asked my manager if I could have an official later start time but that was denied. I wrote a letter to the doctors that I worked for explaining that I was diagnosed with fibromyalgia. I tried to explain how difficult it is to get moving in the morning. Again, I requested a later start time. Again, I was denied. However, the write ups began because of my tardiness. I also felt embarrassed because none of the physicians, that I worked for, believe that fibromyalgia is a real diagnosis. After 8 yrs of employment, I left to start a new job.
I was hired at a rheumatology office. What better way to learn about fibromyalgia, to feel accepted, and to help others. However, after a month of training, I was let go because I wasn't catching on fast enough. I was trying to learn the computer system they use for electronic medical records.
I don't know if fibromyalgia played a part in the learning phase or not. I do take vitamin D pills, because I have a vitamin D deficiency. I am chalking my being fired to fibro fog, lack of vitamin D, and my lack of efficiency on the computer. Knowing that I was in a probationary period, I was still late to work on several occasions.
I don't know what to do. Try to find a job that has a later start time? Work evenings? How honest should I be while interviewing for a new job? Do I say that I miss a lot of work? Oh yeah, that would definitely put me in the running.
I am very frustrated and would welcome any input. Thank you!
Hi Steph,
Just wanted to let you know that you’re not alone. I have the same problem and have for the past three or four years now. I was let go from one job at a dermatology clinic for similar issues with fibro fog and being out sick (however I think some favoritism also played into it that didn’t help) but the job I have now is data entry and my schedule is more flexible. I struggle with mornings as well and often end up doing take home work to make up for being late. I understand how depressing and frustrating it is to struggle so hard everyday just to have others tell you it isn’t enough. I still have anxiety that even though my boss is really good about working with me she’ll get fed up eventually. I’ve always been a hard worker, so this has been a difficult and humbling thing to adjust to. It’s hard to come up with an answer, because everyone’s situation is different, but a night job or even one with an afternoon-evening shift might work better for you. I have terrible insomnia most of the time which is another reason mornings are so hard on top of the pain. As far as interviewing goes, I didn’t tell my boss however, I wasn’t in a flare at the time. I don’t think an employer can turn you down based on your health alone if you meet all the other qualifications, but you might study up on that. Disability or partial disability is the only other option that I know of if you can’t find a job/employer that will work with you. Sorry I can’t be more helpful, but just know you are absolutely not alone, and anytime you need to be reminded of that you know where to come.
Hugs!
Karli
I too work 40+ hours per week and it is a daily struggle. I have been at my employer almost 1 year and I still haven't had the courage to tell my boss I have FMS/CFS and Arthritis. I miss work at times but my employer has a generous leave package so I'm able to use my sick leave to cover my absences. I fear that if I tell my supervisor, it will place stigma on me, make me seem less capable of doing my job and I'll be "the girl with FMS", which is widely and grossly misunderstood by a lot of people that don't suffer from it. The mornings are very difficult for me, as you stated they are for you also; I try to wake up early (if I can *sigh*) to allow myself the extra time I need to cry/adjust/be able to get up and get ready. Honestly, I would not tell an employer about your FMS in an interview. I never have and I think part of the reason is because I don't want it to define who I am or overshadow my abilities. It sounds like you are very smart and strong, but your FMS is the primary cause of what is affecting your work/schedule. One thing I do, if I'm able to get up early, is take a hot bubble bath which sets the mood for the day and helps relax my body. It also helps with the pain. I've found if the pain is at a more manageable level, I'm able to tolerate the day better. I don't have any advice regarding fatigue; that is my uphill battle daily. Have you thought about job retraining or applying for positions that you would be more able to handle mentally/physically at this moment? What is your primary work functions that you are trained in? What type of job are you looking for that you think would help you? You know yourself best and what you are able to handle on a daily basis. Stay strong and hope to talk to you soon.
Could you explain to me what a "FLARE" is? I have good days and I have bad days. Sometimes I have really bad days. I guess I just don't understand what it means. How long does a flare last?
Thank you for your reply to me. I was trying to get up a few hours before I had to get ready. Time to just sit and watch tv., time for the tramadol to kick in, time to wake up. It worked when I was actually able to get my butt out of the bed (lol). I guess I am just frustrated and needed to vent a little. I don't feel that telling a prospective employer that you have fibro is a good idea. I just KNOW that the first time I am late (and it will happen) or need to call in sick......well, you know. It is awful. I get myself so worked up when I feel like that and then I get myself even more worked up because I HAVE to do something or go somewhere. It is a vicious cycle.
Sometimes I don't like coming to this web page because everyone is complaining. On the other hand, I am so thankful for this website. Sorry, Karli, I am just having a day.
I worked for 8 physicians, that did not believe in FMS. I then worked for rheumatology, obviously they didn't have any compassion, either. It is really sad when a doctor doesn't understand. So, how are you suppose to explain to a "regular" employer. I realize that you don't want fibro to define you as a person, but this diagnosis isn't the same as having high blood pressure. I try to be a strong person but sometimes the pain, fatigue, and overall depression just takes over. I am a medical assistant. I enjoy helping people and I don't like to be the "patient." I get aggravated when I am whiny, crying, or complaining (as I am now). Thank you for your response and your suggestions. Much appreciation and HUGS!
Hi Stephi, I am glad you came here today and posted, that is what we are all here for, to help each other. You asked what a Flare is. Generally a flare is a worsening (temporarily) pain level. This can last a few hours, days, or sometimes months. For me, I know if I overdue it or don't get enough sleep on consecutive days, I am more likely to experience an increase in pain. I actually have been having a "mini flare" for a couple of days this week but it seems to be improving now to my "normal" pain / symptoms. You will be the best to decide if it is a good time to tell an employer, I wouldn't bring it up in an interview as it really isn't relevant. I also work 50+ hours week and my employer does not know about the Fibro. I take personal days off when I need to help restore my body as much as I can. Also, have you talked with your doctor about the difficulty in staying alert (fibro fog)? There are medications that can improve alertness. It also sounds as if you have a good handle on the best times for you so perhaps looking for an afternoon / evening job would be a good match? I know for me, nights are worse so I try not to have to work many nights. Please keep us updated on your job search progress. Hugs!!!
Hi, Steph!
You are not alone; I have missed 1 1/2 days this week due to what I call a flare; increase of pain due to maybe no reason at all that can last several days. I know, lovely huh? Just this afternoon I briefly spoke to our HR person at work about FMLA. I’m going to speak to her in greater detail next week. We get sick leave at work but guess what? They don’t really want you to use it much. At the end of my rope, I will definitely be ok not getting paid when I am off due to a flare up if it will put me in a better standing with my company. I am not ready financially to quit out right & hope to get this mess under better control. So, yes I understand. It is a shame that the previous job HR person did not talk to you about FMLA but that employer may not have met the qualifications. DO NOT give out specifics about your health on an employment application. Try for something you already know/love to do–you may not have these issues forever. I don’t know exactly what you did in the doctor’s office but if you handled claims then your skills may be needed in an insurance company, for example. Some jobs like that can even be done different hours, even from home. I hope you find something that will work for you & that you get much better soon! HUGS from Deb
Thank you, Auburnm, for replying. I guess a flare is what I have experienced when the pain level is far more extreme than normal. I guess how I have been feeling, since the weather is changing, would be considered a flare. When the pain level is that extreme, I don't understand the purpose of all the medications. One might wonder if they are actually helping. I have not discussed the fibro fog with my doctor but I most definitely will. Glad to hear that you are feeling better! hope you have a good weekend. Hugs!!
Hi Deb. I hope that your HR person gets things worked out for you. I understand the sick day double standard. I had PTO (paid time off) days, that I earned for time worked, and I actually got written up for taking too much PTO time. What a joke!!! That contributed to why I quit, not that I was financially ready. I was habitually late (5-15 mins) but when you have been employed somewhere for 8 yrs, have a good work ethic, are a team player, are expected to work through breaks and lunches, and work late, you would think that those few minutes would "wash", so to speak. I guess until I work for myself, or hit the lotto, or marry a rich dude, I am out of luck. Keep me posted on the FMLA.
I think I agree with you. It may be best if you don't tell your supervisor. I told one supervisor and when I left the job 6 months later every time I used her as a reference ( I needed to show I had the experience) she told my future employers about it and what I could and could not do. The thing was i was managing my symptoms just fine and was on the right medications. She cost me two potential jobs. Finally I called her and told her she really had no right giving potential employers that information.
Hi Stephi, I am checking in to see how things have been going for you this week. I hope you are feeling better and that the job hunt is going well. Keep us updated when you can. Hugs!!!!
I'm sorry you are having issues with employers. I feel confident you will find the right place, it just may takes some time. I'm a newbie here, I work for a Orthopod that believes most conditions can be improved by exercise and weight management, luckily for me he knows my rhumy so he's helpful.
I understand what you mean by everyone complaining, however I think it's just one safe, non-judging place we don't have to pretend things are all okay. Everyone is fighting some kind of battle and we can all relate on some level.
I know I have to try to 'fake it to make it' but I have found that finding something positive no matter how small does help.
I’m glad this discussion got moved back to the front, I must have missed it before!
First, remember that when you’re on sites like these, that there are a ton more people out in the work with FMS who are functioning and enjoying their lives. People who are here are usually the ones who are having a hard time. If we feel good, we generally don’t hang out in support groups! So, not everyone with FMS feels bad every day, and it can get better.
I don’t envy where you are right now. A year after I was diagnosed with all of the mess I have now, I was forced out of my job. Until that time, I had to fight every single day to get out of be and get my drugs in me and then get to work. It was really the hardest time of my life. When I left the job, It wasn’t right, and I let the push me out because I wasn’t really happy there anyway. But, I did learn some very valuable lessons. 1) Never mention your disability in a job interview, if you actually want to get the job. 2) Never mention FMS to your employers or the folks you work with. They don’t need to know, and many will think differently of you. 3) Find a job that I can do from home. 4) File for FMLA. 5) Disability pays about a third of what I made working and can be a bear to actually get.
What I ended up doing was posting my resume online, and also hunted for light duty jobs. Not exactly an easy feat considering that I was a critical care, and certified ER and trauma nurse! But, I did manage to find one. I didn’t mention my disability in my interview at all. They did find out later and they were not happy, but I had really shone and they didn’t really want to let me go at that time. I had to work incredibly hard for the first year. Upon my being hired, I purchased long term and short term disability insurance. If you get it when you’re hired, you don’t need to submit to a physical, if you wait until later you will. After the first year I applied for FMLA which protects me from termination if I need to miss work for health reasons. I also have a statement from my doc stating my disability and under the ADA, my employer needs to make reasonable accommodations so that I can do my job. The other thing I did, is while I was looking for jobs, I also worked on getting myself better. I tried different medication and therapies until I found a combination that let me function and work. Your life can be better, but it’s a fight to get it there. Take some time to make a plan to get it there and start working on one thing at a time.
I’m sorry that you’re struggling so much right now. I hope things start looking up soon.
GrumpyCat, I don’t know how I missed your response? (lol) Glad I found it!
Thank you so much for sharing your experience. I very much enjoy the feedback here and I didn’t mean to sound unappreciative or uncaring regarding this website. I am very grateful for this support group!!! I am looking for work but haven’t found anything yet. I did qualify for unemployment (doesn’t pay crap).
I have found that I am having a VERY difficult time doing anything, now. I keep trying to analyze what is going on with me but have no answers. I could stay in the bed the entire day! I don’t care if I get dressed or clean or anything. I have enjoyed doing absolutely nothing. My oldest daughter moved out and I have been trying to paint that room for almost a month. I should have been done with it in a couple days time. I know it sounds like I am depressed but I don’t feel as though I am. I am wondering if it is the weather changes. All I know is I am enjoying not doing anything. Maybe, this is just one really overdue vacation (ha).
Thank you again for your response and your concern. I hope you are feeling well.
I understand completely. Just don’t give up hope for better days. I really do understand how you feel. It is so unbelievably hard to feel bad every day. I’m thinking of going out on short term disability/ FMLA leave just to get myself figured out again. It’s been a very rough year, and getting harder. My hope if that I can take time off and take care of myself: get my arthritis under control, get the FMS pain under better control, and relax a little. I need to get better because, as you have found, SSDI or long term disability doesn’t pay squat. Plus, I like what I do, and I don’t want to give up yet another part of my identity because of my disease.
When I was diagnosed with psoriatic arthritis, I took 12 weeks off under FMLA so that I could get my meds straightened out. It helped a lot. I hope very much to get myself straightened out again. When you’re sick the future can be a very scary place, right?
That apathy you are having is either part of the fibro, or part of being chronically in pain. And counseling with good meds can help that. It took me a while to figure out that it’s not normal to want to stay in bed all day (duh!), and get myself to my doctor. Even if you don’t go back to work, you want to be able to do something productive with your time, and to do things with your family. If you are so flat all the time, you may find it hard to do things that you usually enjoy. I hope you start feeling better soon.
Hey Grumpycat! How are you? Did you make a decision about possible leave? I hope you are feeling better. How are you coping with the arthritis? I am feeling a little bit better. I am still frustrated. Have you or someone you know ever had such a difficult time accepting a diagnosis? One day, I feel I have accepted that the drs. diagnosed me correctly and then another day, I think maybe not. I have tried the mind over matter concept, doesn't work well. I just purchased a book titled, Fibromyalgia for Dummies. Maybe, I will find some answers there. The weather has been awful. It is currently 7 degrees. I know that has played a part in my aches and pains. Do you have a Costco where you live? I just purchased a throw heating blanket, plush material. There is a rebate at the time of purchase and so cost is 20 bucks. It is well worth it. It gets so hot, that medium level is almost too hot. Absolute great buy! Thought I would pass on information, hope you can get one. I have started watching, How To Commit Murder. Awesome series. I am watching, Stalker, too. Another great show. I have been trying to keep myself busy and I finally started painting the bedroom. Just wanted to touch base. Hugs!!!!
So, not everyone with FMS feels bad every day, and it can get better.