recently diagnosed and off work - Anyone else going through the same?

[PazzyRay]

Hello all. I am new to this site, and wanted to start out with saying how helpful I am already finding this. I don't personally know anyone who also has fibromyalgia, so it's nice to connect with others here.

The job issue has been one of my biggest worries. I left my job of 8 years in October of 2013. I wasn't diagnosed with fibromyalgia at that time, but I was having a particularly hard time with migraines and medication changes for my bi-polar ii disorder. I was no longer able to keep a full-time work schedule, and unfortunately my job was not able to offer me a telecommute or part-time position. Initially I took several months off under the FMLA hoping that I would be able to get things under control again, but I was not well enough to return and resigned.

I have been formally unemployed since then. I am working on developing my own freelance graphic design business and sell some things on Etsy. This has been good for me as I try to figure out managing the fibromyalgia, since I can work at my own pace and from home. There are days that I can't work at all, but other days that I can put in several solid hours into the business.

I'm glad that I have something to work on and towards, but it is so frustrating when I can't work as much as I want to on my projects, and the sudden decrease in household income has added tremendously to stress (especially living in one of the most expensive cities in the US). I hope that I am able to figure out how to better manage the pain and fatigue so in the near future I can further develop my business and possibly take on some part time work as well.

 

[Kristine]

I know exactly how you feel. I have been diagnosed with Fibromyalgia since September 2013 & have been out of work since. I have worked hard all my life in the insurance business & suspected that I have had it for quite awhile. Stress seems to be my biggest trigger & not being able to sleep at night makes me incapable of functioning during the day. In addition to the fibromyalgia I also have been diagnosed with COPD or bronchiectasis & have to sleep with oxygen. Recently I was also diagnosed with degenerative bone disease in my left knee (arthritis) & because of all the other medications that I take; daily pain meds were not a option. The doctor felt that maybe if I could make my upper leg muscle stronger that might help my knee pain when walking. So I am now taking physical therapy to strengthen the leg, which all it is doing is giving me pain in the knee when I am not using it & especially when I am sleeping. So if the fibromyalgia doesn't wake me, then the oxygen cannula wrapped around my throat or coming out of my nose wakes me. Now knee pain is keeping me awake. I go once a week to a psychotherapist to help me with my depression & to help me accept my condition . I now take it one day at a time, hoping for a better day. If I have to take a nap, then I do it. Just take it one day at a time.

 

[cmetryme]

I too had to quit my job. I was 34 years old and I worked
As the operations manager for IBM and 2 other big named companies.
As I had a biopsy taken from my back that confined skin lupus. The doctors
Told me the lights I'm under 12-18 a day sometimes 6 days a week was causing me the
Pain. After years of continued pain and never going outside and blacked out windows in my home I was then tested n diagnosed with fibro.
I was turned down for disability due to my wife makes to much
Money! I said what does my wife have to do with the
Money I paid into disability? They told me the law has
Been on the books since 1964. Disability is based on house hold
Income. If I want to get it I will have to divorce my wife and move out of my house
That we have been paying on over 20 years.
I'm glad you can appeal and go before the judge.
Its takes an appeal to get disability/ss. My
Two friends just called the state Representative and she got theirs pushed right through.
Y'all make the call n do the appeal. Good luck
To all.

 

[terbaer]

After almost 30 years of government employment, I am no longer able to work. I am officially medically retired as of January 31st. I worked for years juggling my hours, depending on my health that day. I pushed and pushed myself, felt guilty and kept on trying to do the best I could at my job. I ended up having a heart attack in October 2013 at the age of 49. That was a wake-up call and my body was never the same after. I think it just said, you can't do this anymore. So in December 2013, I tried working part-time in my position. I was a manager for over 20 years. I was lucky. I had a very supportive boss at the time. Unfortunately, I started oversleeping and failed at the schedule we agreed I would try. In July 2014, my physician put me on medical leave for a month. I think my body decided it wasn't going back. And I haven't. I let go of the guilt and stress of not measuring up to my own standards and feel at peace. I have few good days and my house I can't maintain, but my husband and this site have been a godsend. My biggest stress right now is how we are going to survive. I was the major breadwinner and I currently only have $240 coming in from the state's Long-Term Disability. After working the numbers and even though it's less than half of what I used to make, somehow we can survive when I start getting SSD. I just pray it's soon....

Cemetryme, I applied for SSD in August, and unfortunately I am still waiting for an answer. SSD does not look at the household income, I think SSDI does, which I didn't qualify for because my husband works. I'm wondering if you applied for SSDI?

 

[sideline]

During my testing & diagnosis phase I was off work for about 6 months or so when the symptoms became unbearable and I felt like a doctor's test dummy on different meds and being poked all the time. Honestly I was probably at my lowest while I was off work. I have been working full time for the last 9 years in a high stress job and while there are days that are really rough I am way way better now than I was when I wasn't working.

When I was off work I could just lay on the couch and feel sorry for myself and dwell on everything that was hurting or things I was missing out on, etc. I'm not saying that this is what you are doing but you have the opportunity to. When I finally got sick of being like that and just got up and dealt with it and moved on I was in such a better place. Sure I still hurt every day and by the end of the day I can hardly walk. Yes I still have depression issues and have to address that every day. I have to be somewhat mindful of my limitations but I refuse to stop living just because of these things.

Keep your chin up, focus on what you can do. Go out and do the things you enjoy! You may hurt a little more after doing them but it will be worth it! Never ever give up and give in to this condition.

 

[BombayMum]

Dear Sideline and everyone else who has posted above, I came here ten minutes back, cried my heart out in a post and then I read this thread. Looking back there is a huge list of great jobs that I have left alongside the way and the next one I am getting , I'm just so unsure if I should do it. Its a teaching assignment in a lesser known pvt college. I had decided to do something "lighter" in dec and came up with a work business for myself, but the truth is that after one phase of it, I was exhausted. getting a business in shape, you need to have infinite energy. Just when I needed to give it the thrust this month, I was unable to. migranes, vertigo... not to mention zero support at home. I wodner if it has something to do with the weather. Its been rather cold in India this year. All of you inspire me to work and enjoy..and I hope I get out of this state fast, for my own good.