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Living With Fibromyalgia - Online Support Group

Not sure which way to turn?

#1

I haven't been on in some time due to all the things happening in my life...I am now in need of suggestions on what to do because I feel so overwhelmed I'm at a loss :(

I have only been diagnosed almost 1 year with fibro and chronic fatigue. The fatigue has now gotten to the point that I am late (10-20 min) almost everyday to work. Prior to being diagnosed, my company put into effect a new tardiness policy, that if you're late so many times, they write you up and it goes against you like the attendance policy. My commute is 90 min on a good day, my mgr knows this and I have also made her aware of my illness. I'm only seeing a neuro as of right now and he filled out my fmla papers for 3-4 times/mth 30 min -8hrs. I'm obviously going over that but I don't want to call off because I really did like my job. He now states I need to see a pain mgmt doc and psychiatrist for them to fill out fmla papers since they are more qualified? And for a paper trail to apply for disability. Do I let them fire me to get unemployment? I also read getting unemployment hurts your chances of getting disability even after being denied. I'm in Ohio, am I able to qualify for caresource (medical) and any other benefits without working? I feel guilty, I'm only 43..i have a soph in college and my youngest is a soph in HS, then I have custody of my 2 yr old granddaughter. If I choose to stay home with her and try and get disability, is that possible?? I'm at a loss :( I'm too young and I feel like a failure. Any advise would be appreciated!!

#2

Hi GMN, I am sorry the fatigue is so bad. I also have gone through times where it is really hard to continue working. Once I did leave a job and was on short term disability (in CA you can take a year if you have worked enough and an MD deems it necessary) for a while. However, I found that I became increasingly depressed so eventually I returned to work at a different job. Regarding FMLA, it is my understanding any MD can fill them out. Regarding pain management, just a gentle caution to proceed carefully. Personally, I have found non-medication treatments to be more effective for me, most of the time. Things like physical therapy and mindfulness techniques are generally more helpful to me. Another thing that helps is to control stress, try to eliminate feeling guilty (I think everyone on here can relate to feeling guilty, myself included), and get enough sleep. Not that those are easy things to do but it does help most people. Please keep us updated on how you are doing. Hugs.

#3

Some suggestions… Contact a disability law center in your area. If you cannot find one, then contact the vocational rehabilitation services in your state. They should be able to help with resources. Get a therapist who understands chronic pain and have them guide and support you. I would hold off on disability but talk with them before doing anything. Let us know how u are doing and if there is additional help I can provide.

#4

I can completely relate to your situation. I have been overwhelmed and feeling guilty for not working. I am 46 years old. I am currently appealing my second disability denial. I have a disability lawer this time. I have other health issues along with Fibro.

I agree that you should consult with a lawyer before you make a decision. I have also benifited more fron non-traditional pain relief such as meditation and breathing techniques than prescription medications. I joined the YMCA just to soak in the hot tub. Stress increases my pain levels. Don’t be so hard on yourself. It sounds like your doing the best you can.

#5

Fibro and Chronic Fatigue - aaagghh! Before you accept the Chronic Fatigue diagnosis, did they do a sleep test for sleep apnea or other breathing disorders? Having oxygen every night has really helped me. Definitely get a lawyer when applying for disability. Sometimes the wording makes all the difference. Don't see just a psychiatrist, see a behavior therapist. A behavior therapist may be both. She/he will be able to teach you coping tools. Don't see just any physical therapist. Make sure they are experienced with fibro patients. You may progress more slowly than a normal person in PT. As for a Pain Mngmt doc, do not let them talk you into epidural injections unless you have pain consistently in one area. If you only have fibro, your pain will move around frequently and the steroidal injections will not help. The comments by Auburnm are due to the fact that pain drugs, opoids, act for a limited amount of time. After 3 months or so, you will feel consistently better without them. And getting off them is horrible. Try talking to TakeCourageCoaching.com about their program. It works. Bottom line: the best therapy is distraction. Try pacing, reduce the length of time you do any one thing without a short rest. Try reading Gratitude Diaries by Janice Kaplan. Try including some exercise for a few minutes several times a day: a short walk, isometrics, a few stretches, etc. Get up out of your chair frequently whether at home or at work. Talk to yourself in a positive manner. Do your best to eliminate any negativity. I'm sure you'll also get other suggestions here. This is a great support site with great people.

Good luck and gentle hugs,

Kathy

#6

I can only tell you from my experience and the research I have done. I was always late also I had to switch my time to be at work in order to be there on time. The thing about it was my immediate supervisors were very understanding about my Fibro. They new to get moving in the mornings were painful and slow process. As far as disability goes I have read some real horror stories people were saying how it is not enough to cover the bills. At that point I started looking for alternative methods of keeping me on track. Breathing through pains and walking on breaks and on a study schedule helped me out a lot. I thought about the disability expects also but I know I could not afford my household even on a minimal budget with what they give you.

#7

The best thing I found that helped was this site. I loved being able to ask questions and not worry about being judged. I found different options to try. Some worked some did not. I will tell you briefly as I can what worked for me. I did have to stop working in 2011 and that has been hard. My daughter was 7 at the time and I would be in such pain at the end of the day I could barely take care of her. I have tried so many things to help with the pain and fatigue. I can not take any of the medications for fibro, Lyrica, Cymbalta, Savella. I have also tried Gabapentin and other Meds. None of which worked and had crazy side effects. I did PT with great therapists that had worked with Fibro patients. That did not work either. Meditation, stretching, massage therapy etc. I have tried and tried. But the important thing is that I did not give up trying to find what works for me. I do have other issues besides Fibro as many of us do. I guess this was not as brief as I thought it would be. So to make a long story even longer, sorry :slight_smile: I do take hydroconone, this was a last resort for me. I found that Tumeric helps also. But the biggest thing for me was to loose the guilt and accept that this was not my fault. I was not lazy or crazy. It’s ok to ask for help, physically and mentally. Understand that you might get a lot of suggestions, try what you feel comfortable with. What works great for someone may not work for you. I am not sure if any of that helped but if you have any specific questions you can always ask.

#8

I hate to be the “Debbie Downer” but I have not had good experiences with individuals being understanding. I have lost the last 3 jobs because of absences and tardiness. I tried to explain my diabilty to one job aND instead of making accommodations they began nit-picking and eventually fired me; " I was not a good fit." My latest job wrote me up for missing 6 classes over a span of 60 classes; cited that 10% is considered excessive. I have applied for disability and I was denied with the statement that I do not look like I am in need of the assistance I was seeking. I have recently tried to apply for jobs revealing my disability and they don’t give a second look. I am still waiting for a hearing, despite applying 9 months ago and there is a 14 month waiting period to see the judge. I had a higher salary than my partner and I always held the health insurance. Loosing my employment caused a loss of income, loss of health insurance, and even a loss of our primary residence(our only residence), and our motor vehicles.

#9

Isn’t that discrimination under the law covering making accommodations for disabilities? Of course, I realize that if an employer wants you gone they will find a way. But that doesn’t mean don’t fight back. I know someone who was fired and won a lawsuit for age discrimination. Seems like we should have accommodations to assist us with being as productive as possible.

#10

I am so sorry to hear you are going through this. I am only 25 but already struggling in maintaining my career due to my symptoms. I very much understand the sense of failing and feeling too young to be suffering this much. I can only assure you with the same things people have been telling me. IT IS NOT OUR FAULT and above all, WE ARE NOT FAILURES!! Some days when my boss is really getting on me about my performance, I have to repeat these things to myself or have a good friend repeat them too me. It is harder then most people can imagine. I am likely going to have to utilize FMLA for the first time this year and have started the process of requesting accommodations at work. I wish you the best of luck and peace of mind with your decision.

#11

To work or not to work? I'm home sick another day, and constantly worry about losing my job. I've already lost others and ended up in a homeless shelter. But still not eenough to get disability. I'm so tired I fall asleep in the middle of my work or the middle of the day. I deal with joint pain and swelling almost every day. My doctor requested a sleep study but I've been waiting for weeks for my insurance to approve it-didn't know it was that complicated to get a sleep study done. I'm hoping for some evidence that will expedite my disability, because trying to maintain a full time job is almost impossible for me. Anyone have any ideas about jobs good for people with Fibromyalgia?

#12

Here are two websites which might be helpful for getting job accommodations and also advice on SSDI:

JAN - Job Accommodation Network

Social Security Disability Secrets

#13

Hi Dani
I may be late in replying to your email. A suggestion for good working environment for people with fibromyalgia is administration work. Wordprocessing, photocopying, reception. Anything that is moving. I found it very difficult in jobs where I had to sit all day. I really got sore and stiff.
I take cipramil, lyrica, and heart meds too. FM definitely improved for me now that I am retired. A long way off for some but nevertheless something to look forward to.
Love and soft hugs Dani
Mary Michelon
South Australia xx

#14

What medications are you taking?

#15

Hi GMN,

I am in Massachusetts and I understand every state operates differently but I would check out the facts about being denied disability once you have been on unemployment. My understanding is that disability is funded by the government not the state. I was on unemployment for 8 months and ran out. I applied for disability after I ran out and was accepted 2 months later. My son was 2 years old when I was accepted and they did not have an issue with me caring for my son. In fact, because I was on disability I qualified for daycare. I was 40 when I went on disability. I loved working but even my employer knew it was time for me to throw in the towel. I had worked over time for 2 years. .

#16

Hi GMN,

I just got approved for disability and been out of work since 2012. I am 44 years old. I felt guilty for long time but if you are not lying and telling the truth about your condition worked as long as you can I don't think you have nothing to feel guilty about. That is what it is there for. But I think your doctor is right have see other specialist and get on paper of what you can a can't do. I am seeing a PCP . Then I have my team of specialist. When I applied for disability everything was taken into consideration. I worked for 12 half years before I left on FMLA and could not make it back. I was not fired but got what you call Medical Separation. I was out of work for 3 years before I got approved. I had to go all way to the hearing step. I live in Wisconsin been pretty regular for them to make you wait three years.

My regular doctor filled out my FMLA papers. I had originally left for back injury. He was primary treating doctor. But I know it does help to have as much of your health issues documented have as much information as you can. I had restrictions so made it harder to do my job. I was lucky I had a good disability program through my job so made less stressful while I was off work.

Having dependents here in Wisconsin makes easier to get help. I didn't.

I know it would be bad if you got fired and couldn't get an income. My work also had a strict attendance policy.

Miss 3 days in three month period counts late too. If you were late more than 15min that counted as an absence.

I understand you worrying about what to do

Have tried talking to your boss see if you could get later start time. Is that an option for you.

This always stressful when it gets to this point. Hang in there and don't feel guilty about any of choices you make

good luck