I don’t want to offend anyone so please I only ask because I’m scared.
I see that some of you are not working, and I’m wondering what was the last draw, how did you know enough was enough.
I’m scared that this day will come, which I’m sure many of you were too.
Once you knew it was time to stop how was it getting your doctors to take you off work?
Are you on disability? I hear that it is really hard to be approved.
Dear Justamom
I understand exactly what you mean and the concerns you have. There are difference according to your career choice and to what country you live in. I am a teacher and I live in Canada. Teachers in Canada pay into a Teacher's Pension Plan every month that they teach.
I have lived with my chronic illnesses all my adult life thou I was not diagnosed til age 44. I taught full time til age 55.. I pushed on ignoring my pain and what my body told me until age 55 when I could no longer force continue to teach in the classroom where I had nine grades on a Hutterite Colony and the Grade Ones knew no English because the spoken language on the Colony was a low German dialect. I had no help. Yes, that was quite a hefty load. But I loved it. So, I took early retirement at age 55 and was able to draw on my teacher's pension, but that didn't cover all my expenses so I tutored, taught piano and voice in my own home for 12 more years. Teachers in Canada are able to continue with their Benefits Package(including dental) until they reach 65, then they have to find their own individual insurance. By 55 my two children were raised and on their own so I had only me to be concerned about. No, I am not on Disability.
Rachel,
Thank you for sharing. I hope to make it to 65? Retirement age I think. I pay into a 401k… I’m not sure what would happen if I needed it early. Again I do hope to be able to make it to retirement age… I teach medical assisting, and I am doing college for a bachelors in business. I hope to go into a directors position and stop teaching eventually, except training, leading and assisting my own instructors in the class, which I think will help, the hours on my feet are getting to me.
Joy
Paying into 401k is a good thing when i went of work i dont no what i would have done without it. The last 2 years i was out for 6 weeks at a time every 6 months my doctor finally told me i was not going back i had short and long term disability at work and have just filed for my social security. Keep good records of medical visits copies of days off work start keeping a diary of your day the pain, things you can not do. i was lucky enough to have enough in 401k to pay off my house. Plan ahead and try and keep dept down.
Hello! I left my job as asst. mgr. at a convenience store/full service gas station first with a note from my physician at that time that stated I could not perform my job duties anymore. I asked her for the note. The note asked for a medical leave of absence. I could no longer be on my feet on hard floors for 8/9 hours a day. The company gave me 6 months before filling my position. I did not go back and did not seek disability at that time because my husband has a very good paying job and I had our children close to help me. Now....this is where I made my mistake.
If you leave your position for medical reasons...mark your calendar! After 6 months you should apply for disability. For every quarter you work the govt. gives you a point...so 4 points a year. When they look at your employment history and points they look at how long it's been since you worked. When I applied they said that I needed 21 points in the last 10 years...I didn't have that since I took my leave in 2004. Now I must wait until 65. I should have applied right away!
I live with my daughter and her family plus two of my grown sons, one that helps me and one that we help due to a hit and run accident and the injuries he sustained. It works okay for us but not without it's moments.
You shouldn't stress yourself over all of this right now though. It's not good for you. The important thing for you to do is to take care of yourself first and foremost and if/when it's time for you to be done with the additional pain your job lends you then bow out gracefully and visit your human resources dept.
I was also pointed to a "Peer support specialist" that works out of the clinic I use and they help to find what resources there are in your county and help you to take advantage of them.
My doctor was well aware of the pain I was having and how my job made it worse. Don't be afraid to talk to your doctor when the time comes but make sure your increasing pain as it relates to your job is well documented...start now.
I hope some of this was helpful. Be sweet to yourself
Always~Laurel aka Northwoods G-Ma
I’m glad to hear about the 401 K helping you out. I will start keeping track of everything, now. Just in case. Thank you for your response.
Joy
Hello. I know I shouldn’t worry now. I will stop. I just try to think ahead sometimes. Thank you for your response. I will keep track of everything especially if I need to call in for pain, etc. thankfully I am hanging in here so far.
This was very helpful. Thanks again.
Joy
Thank you Tinawi. I’m sorry to hear about what you went through. I know some people still work. But I know a lot are not. I just wonder because sometimes I feel like I can’t do it, but then I get up and go. I wonder if just one day I won’t be able too or will these awful symptoms will actually worsen. Guess I need to stop worrying.
Thank you for your reply. Have a good evening.
For me, the last straw for my full time job was when I'd come home exhausted and in agony, and then go through the holidays like a zombie. i never felt rested or not in pain, no matter how long i stayed in bed. It occurred to me after about 3 holidays like this that I couldn't do it any longer. My job was quite physical and I honestly thought I was going to die from the pain and exhaustion. I don't know how i got through that time because i was alone back then.
The last straw for my part-time job taken after i could no longer work full-time was when i was pulling myself upstairs using my upper body strength because my knees were aching terribly and felt encased in concrete and like they wouldn't move. I finally couldn't do the upper body pulling of myself anymore, plus i was exhausted and terrified that I would get in or cause an accident (i was a Meals on Wheels driver.)
Yes, I'm currently on disability. it only took one try for me to get it but i know it takes many others several tries. Using a lawyer who only does SSDI cases is key. They know how to prepare all of your paperwork in a way that the ssdi office requires.
My doctors both supported me in my desire to stop working. Again, I know others who've not had that experience but i would dump a doctor who could not apprehend how serious and painful my situation is.
If you are thinking it may be time to stop, you're definitely getting there. I STRONGLY advise you to apply ASAP for disability if you are not working or are only making around $1,100 a month. If you are working and must stop, I hope that you could get unemployment until you could get disability. However, I don't know if getting one negates getting the other. For instance, someone explained it to me like this: if you're going for unemployment, you're saying that you're fit to work and are looking for at least 3 jobs every week. However, if you're going for disability, you're saying that you are not fit to work. How that situation works out I do not know. I'm just not sure if you could get unemployment and then try for disability too. You might wish to ask others who've tried.
I hope this was helpful for you. You have my sympathy and support.
Gentle hugs,
Petunia
Hi Tina. It's funny that you mention the terrible lower back pain, as so many of us suffer from it! I honestly think that is one of the first places for fibro to hit. It's still my worst spot.
That mirgraine sounded awful! Odd that so many fibro people also get complex migraines like that. I'm so glad that you weren't having a stroke, though!
Thanks for sharing with us. I cried on my last day too and hoped that my boss would protest my leaving but she did not. I tried my best to do a top notch job but this darned illness just bested me.
Yes, that's a must, you must have good records of medical visits. I saved every sheet my doctor's office printed out, and they also had my various diagnosis on them. i also kept track of each different doctor's visit in a weekly planner. Both items were essential when filling out the disability paperwork. SSDI wants all of that info so please be sure to keep good records!
Laurel, are you aware that if you do not qualify for SSDI due to insufficient credits of time worked that you still might be eligible for needs-based SSI? Here's a link describing it, it's the last example given in the text: http://www.ssdrc.com/disabilityquestions3-45.html
Thank you Petunia girl. There are days where I think this is it. Then I get a blast of I can do this. It’s an every other day thing that I go through. I want to work so I push through. I hope to continue to work for a long time 
Joy
I'm so glad that you asked that question! AND, welcome to our group, there are some very special people on this list. It's very normal to feel scared about all of the decisions that coming with a diagnosis of fibromyalgia. Your life will never be the same, but with support from friends that care, you won't have to make some of the mistakes we did..I guess I should say I did. That's a whole other post and then some. It's about rest, exercise when possible (even if it's in bed), meditation, yoga...and yet, knowing that these things help, we don't do. It was so important for me, once I was able to get out of bed! :-(
I've had FMS/CFS for 20yrs. Once I was diagnosed with pain from head to toe (I used to explain that I felt I had been hit by a MAC Truck) 1993, came shortly after a hyserectomy. After being off for 6 weeks I was feeling pretty well. Then slowly but surely, with the stress that comes from managing a dr.s Family Practice office, the achiness began to get worse. My last straw was in 1996, and I could not get out of bed. I was on to much pain medication than I should haven't been working anyway, but I loved my job, but "in my head" the patients "loved me" and the office couldn't possibly run without me....I actually had patients tell me that......so, it must have been true!! NOT! I was just such a people pleaser than I made sure each and every patient that had a request had it done stat!!! No wonder they loved me! I wish I could have seen the error of my ways earlier and changed them a bit, I'm just not sure I could have done it soon enough to prevent the FMS from getting so much worse. So, one day, I literally crawled to the bathroom,called the office and told them I wouldn't be in. I waited wayyyyy to long! There are to many options now to help you out finanially. At the time, I lived in Calif, and after deciding working was no long an option (major tears........) I filed for state disability, which was almost as much as I was making and it was for a year. During that year I made it my full time job to get on Social Security Disability. Most important tip I can give you on permanent disability is that you need to keep impeccable records, you'll need them over and over. I'm an open book when it comes to helping those in need do whatever it takes to get on SSD..I was 49yrs old when I applied in 1995 and was told the closer I was to 50yrs in age the easier it would be to get it...that was almost two decades ago so things very well may have changed. Are you able to do any low impact aerobics..that extended my time I was able to work, but when I crashed, I crashed big time. I started receiving SSD when I was 50 and kept it until I was 65 when I was switched to Social Security. Also, when my SSD started I also got Medicare which was really nice.
Of all my friends that have FMS today most are not able to work because stress always makes FMS worse. If you have the time and money and patience, you can learn to reduce a lot of the stress. I'm repeating myself...
Please let me know if you have anymore specific questions and I'll do whatever I can to help you! Hopefully you've got a doc that is very supportive of you and of the FMS. The Dr. I worked for had the first FMS patient in our county of 50,000. Interestingly, 4 of my closest friends had it also. we started the first Fibromyalgia Support Group in our county and what a turnout. After awhile I turned it over to someone else but if you have access to a FMS Support Group in your area it would be great to drop in and say "hi."
Best of luck to you...I'm always around! (((((hugs))))))) Susan aka:grandmadaleyx11
Sorry, I tend to ramble when I write!
Thank you. It’s good to know I have support through this. I am too a people pleaser and I work extremely hard at my job to make sure everyone and every student is taken care of. I am a medical assistant instructor. The thing is most days after work I drop. I can’t hardly move, let alone take care of my son he is 4. I do what I can and wish for more. I just really like to be prepared and i think knowing that day will come makes me want to hear everything I can NOW not after I screw up. I appreciate your words not a ramble at all.
I love this group I’m so glad I found it!!
Joy
Hi, I can relate...
I've always loved working. Since I was 15 I worked a lot, and I put a lot of my self-worth into the quality of my work. When I was 26-ish (I'm 29 now) I landed a job that I LOVED. I learned a lot there, gained great experience for my resume, it paid well, they were going to pay for me to get certifications, and the company was flexible with things like me working from home if I need to. I was incredible thankful and happy where I was!
I've had severe Fibro and several other conditions my whole life, so I thought I had a handle on dealing & living with it. Well, about a year after starting this new job, my symptoms all started getting worse and I started getting completely NEW symptoms! It was scary! I went to Dr after Dr, continued trying drug after drug, treatment after treatment, but nothing worked and I was getting worse. The severe widespread pain in my body, chronic migraines, worsening photo-sensitivity, and the newest addition of constant 24/7 dizziness were making it impossible for me to work, even at home. I was terrified.
At that point I was taking a class at work to get a certification on top of my crazy workload. After hours of crying on my husband's shoulder, we decided that I need to stop the class. I wanted it so bad, and it was a great opportunity for my career, but physically I couldn't do it on top of work. It broke my heart. I told myself that once I got my health under control then I'll get the certification then.
Shortly before that though, I had sought out a local support group for Fibromyalgia because I was scared that soon I won't be able to function at all and that I'd have to stop working altogether. Well not even a week after leaving the certification class, I realized I couldn't work AT ALL, PERIOD. I went on unpaid medical leave, which is only 3 months. At the end of those 3 months I was still just as bad and couldn't come back to work so they fired me. My worse fears had come true; I lost the amazing opportunity because of my illness. I was completely heartbroken. I felt like the biggest failure. Not to mention all of the physical pain.
It was a huge, difficult decision, especially for me because of how much I loved my job and working in general, and because of the opportunities I was loosing...but the decision was the right one. I knew it then, and after a year out of the workforce being able to concentrate on me and my health it proved time and again that it was the right decision. I could have gone on disability as my doctor suggested, but I personally didn't want to. Fibro has already taken so many goals and possibilities from me, and I didn't want it to take away working. Yes, I'm stubborn. lol After that year off, I was able to go back to the workforce. I don't have as bad-ass of a job that I did before, but at least I get the satisfaction of working. It's with the same company (different business within the company though) so I still have the flexibility of working from home when I need to. If it wasn't for that, I wouldn't be able to be employed at all. So again, I'm lucky in that regard.
To answer your question about what was the last straw to leave the workforce, it was the point when I no longer contributed ANYTHING. My doctor's knew my situation well (how many years I've been in pain, and that it must be bad if I'm saying I can no longer function at all), so my primary care physician and neurologist were both happy to write a note for medical leave. As for disability, like I said I never tried, but every single person I've talked to that is said it was difficult. You'll likely get turned down the first or maybe even the second time, but try again! Do you have any other conditions besides Fibro? Most people have said that if they only had Fibro they would've had even more difficult time getting it, but because they have something else (chronic migraines, diabetes, etc etc etc etc) it was more likely to get accepted.
I hope this was a little helpful at least. I think you'll know what the right decision for you is.You have to take care of yourself. <3 Best wishes to you!
I stopped because my doctor told me to. I probably would have worked until I dropped dead from pain or as I was already driving off the road when the pain was bad, probably killed myself in a car accident and hopefully not another person too. I'm working with a disablity lawyer to get SSDI and it's a noxious process that's been going on for about a year as they routinely deny you on your first application. I am living on savings that are dwindling and have no one but myself for support, which I think is part of why I got FM in the first place: I try too hard and have no help. My life has been one of exceptional struggle and I think my body just finally broke down. It helps to know that the FM is a call to focus on your own self and happiness for thorogh healing.
You have to have a Rheumatologist do the documentation in the US.for the best medico legal case.They need to say in a consult report that you are physically unable to perform your "usual and customary" job due to physical disability. They have to give the date they made the diagnosis of FM and the history of your progressive disability. It really helps to have a lawyer guide you thru the process because of the overwhelming comlexity of the general situation and debility.
It's really hard to proove FM, but it's a stress to deal with the legal aspects which makes the FM worse. This is a catch22 in it's most basic definition.
I totally understand how you feel! I am still working and am blessed to have a secretarial job so I'm not on my feet all day but I know that if I can't get this under some type of control it's just a matter of time. I have been noticing alot of things I mess up because of my fatigue and fog. It's scary. even with sitting down most of the day the pain is so intense and the stiffness is crazy!
Because of all the great advice I am going to start getting my records in order now and start keeping documentation so that if that time ever comes I'll be ready! You ladies rock!!