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Please tell me the truth no matter what the answer is


#1

Hi, I was diagnosed with fibromyalgia one month ago. The way my days go, I have no idea how I’m going to feel. Every day I have pain somewhere on my body. Some days I just lay on the couch in severe pain hardly able to walk. Other days I still have pain but I can drive a car or have lunch with a friend. I am not able to walk very fast since my diagnosis. Ok everyone, is there anyone out there that has been able to manage their fibromyalgia and work a full time job that requires you to be on your feet for long periods of time? I am a nurse who was use to working three 12 hour shifts a week. I am on short term disability from work right now. My doctor ( not rheumatologist) told me today I needed to start applying for jobs. The place I worked for suddenly closed since being on disability. He is concerned about my financial situation. I live alone and support myself and will soon have to start paying off about $20,000 in hospital/ medical bills. I just want to know, am I going to be this way for the rest of my life? How do people work full time jobs to support themselves? I want to know the truth. Please. I don’t have family who can help me. Are there people out there who work full time jobs maybe sitting at a desk? And still managing their fibromyalgia? Are there people out their with fibromyalgia that don’t have much pain? Thanks ahead of time for answering my questions. Jean


#2

From an insurance standpoint how did the bill get that high? Did you not have insurance via your employer? If you had insurance check your policy for your max “out of pocket” (OOP) as that will be the actual cost to you after you pay your premiums.

Being on disability now means you qualify for assistance, get in touch with the billing department of the hospital for information and get your paperwork in asap. Don’t worry about medical bills, you can always work out payments for that, worry about your rent.

azurelle


#3

Hi! Thanks for your response. I was very sick in November and December of 2017. I was in the hospital for long periods of time. Each time they billed my old insurance so they had to re bill my new insurance. I met my deductibles and oop. But in the end I will owe about $8000.00 for the year 2017. Then in March, I was in the hospital again. I met my deductibles and oop. Again, they billed the wrong insurance. In 2017 and 2018, my insurance payed 80% until deductibles etc. we’re met. So in total, I owe about $20,000. I had and have BCBS so the numbers were mixed up and the billing got mixed up. I haven’t received a bill yet from the three hospitalizations. I expect to get them any day now. Plus I pay close to $800.00 a month for COBRA insurance. I have no idea what to do. In the last year and a half, I’ve worked about 3 months. I have been on short term disability through my work. Well, I worked at one job for three months, went on short term disability then quit. I worked part time last summer for Uber until I found a full time job that was less stressful. I found a job in September. Went into the hospital in November. Went on short term disability, then in April the place I worked at closed. It was the best job I had ever had! I’m still on short term disability for several reasons including fibromyalgia. My short term disability ends the end of September then long term insurance begins. I see I’m going on and on. Sorry. Just a little overwhelmed.


#4

Make sure you have a Dr who treats your fibromyalgia. If you treat it right away you may improve. Do you have a pain clinic near you that treats fibro?
They should try you on lyrica, ssri’s, nsaid’s, pain meds, nerve pain meds, and muscle relaxants. Gentle exercise in a warm pool is best, massage therapy helps.


#5

May i ask how long you have had fibro , and are you treated at all?

I was worse in my thirties, got better, raised my kids ,

In recent years , worse again, i seemed to do ok till one winter my vit d levels fell, felt like i was 90… have they checked your d levels…

Try to make yourself move as much as you can…and stretch daily…with some help from my dr, and a lot of self help…
Most of us can learn to cope…i would think nursing may be pretty tough for fibro…ideally working from home often works best , but it is isolating…

I love topical pain products…then whatever area is worse , i can cut it way back… i am medication sensitive so i have to find other ways to get help.

So i would say you can probably get better…but its very trial and error, what helps each of us…


#6

It’s really depressing when I read what others are going through with this terrible disease. I have Fibro, Depression, Anxiety, and Post Traumatic Arthritis in both of my wrist. Yet, when I read these post I feel even worse for those others who are dealing with these issues. I’ve always been more sympathetic towards the suffering of others than myself though. I haven’t worked in going on two years. I lost my health Ins around May of this year, so I haven’t been able to get treatment. I applied for Disability but was turned down twice (I just filed my third appeal). After five months of trying I was just approved this week to get into the local clinic who doesn’t have an available appt. until mid Sept. I’ve had days where I’ve been very close to committing suicide, but something keeps me going. And as bad as things are I don’t want to leave that upon my children. I pray that you get the help that you need and that things get better my friend.


#7

Hi everyone, thank you for all your support and advice. I have only been diagnosed for one month. In that month, I’ve seen a rheumatologist twice and a neurologist once. On Wednesday, I see my neurologist and am having an EMG. Currently I take 60mg of Cymbalta twice a day, Gabapentin 300mg three times a day and Aleve 440mg twice a day as needed for pain. I am just trying to learn what my life is going to be like with fibromyalgia and will I be able to work full time. I need to support myself.


#8

I don’t know what to say to help but I do knows paying medical bills from hospitals is the last thing I would worry about if I were you what are they gonna do to you ? Have you applied for Social Security disability? I don’t I will pray that you get Social Security disability know that you said you don’t have people to help you but the people here are so helpful. Even though I don’t make a lot of comments I come here so I will not feel so lonely . We are all out there struggling alone but together anyway. My days been getting worse and I came on today visit with people to see other people felt the same way as I do I wish there was something else I could do something I could do to help you I will pray for you and wish you the best of things will get better. You will be in my heart


#9

For some of us it is possible to have low pain and work full time. There are options to explore that might help. I found I had huge problems with side effects to pain meds, and opted for natural supplements instead. For me this has been much better. It’s a matter or trial and error to find what works best for you. Hang in there and I hope you find something useful soon!


#10

Also, in terms of paying hospital bills, pay NOTHING until you can match the bill to the EOB (explanation of benefits) from your insurance that shows what your insurance has already paid and what the hospital as agreed to accept.

There’s a terrible thing going on in insurance right now called “transparency” – this means you get sent copies of EVERYTHING, whether you need to pay or not and often times whether or not it’s even a bill. You will also end up getting doubles and triples of things so be careful you don’t pay something more than once.

azurelle


#11

Wow azurelle! Thank you for your wisdom! And thanks to all of you who have responded to my questions!


#12

I found desk jobs are harder on me. My lower back and legs tend to go completely numb within the hour. I just had to switch jobs to something that I can both walk and sit. My last job required 8 to 10 hours of my being on my feet and it was easier then 4 hrs of sitting. Everyone has unique pain and triggers. You will find out what works best for you as your journey continues.


#13

Hi Jean,

I am a nurse and since I have a hard time standing and walking for prolonged periods, a desk job is doing well for me. It’s not for everyone, since you have to make sure you have an ergonomic chair, desk and computer set up. I work part time since my job is quite a drive, and driving is also painful.

You will have to find what works for you, but depending on the severity of your symptoms, you may be able to work full time.

With medication, my pain sometimes goes away. Sitting still, I usually feel okay, but movement is usually tender. The first year was the hardest for me. Sleeping a minimum of 9 hours makes me functional, and there are supplements to help with sleep if that is a struggle for you.

I was really touched by your post, because it reminded me of the first few months of my illness.

Hang in there. Life is worth the struggle.

Heather


#14

I’m sorry that you have this horrible disease I’ve had it now for 25 plus years it’s been horrible I’ve lost all my friends that I knew before I had this I was a postal worker they gave me disability at the time so then I went for social security disability they denied me three times and the fourth time they got it right I would recommend to anyone get these lawyers on tv first time don’t wait cuz I lost out on a lot of money but as far as fibro goes it’s only gotten worse for me flares last longer I’ve been on so many meds over the years
I have also tried many different things some meds work for a while and quit I loved being on Cymbalta I was on Lyrica for only three months and gained 75 lbs and it didn’t work but like always meds quit working I’m really bored I haven’t found anything I like to do my brain fog is horrible I don’t get regular sleep now my family doesn’t understand why I can’t make it to family functions I do have a husband that tries to understand but he would never be as strong as I am to fight every day as I do it’s horrible horrible disease I’m lonely and it’s not like a cancer that they either fix or you die you just suffer and nobody can see it not even the doctor when you tell them your pain is passed the chart they have to offer right now I’m on a narcotic called narcos and it helps me get through the day I have pain but at least I can get out and walk around a little bit and do a little around the house boy my house used to be clean no clutter I had to give all that up I can’t take showers like I want to nor do my hair like I want to I see things differently now I have to I don’t want to I think I fight that all the time I would love to have me back I loved me then so organized knew what I was doing made good money but now I’m lost in this pain that just takes over people say just push through it or shake it off or I can’t believe you are in that much pain and that’s not the exhaustion at times or irritable bowel or migraine headaches or the numbness and the tingling in the hands and feet I’m so so sorry you were diagnosed with fibro but this is a good place to talk with people and I hope you can keep working but please don’t make it harder on ur self soft hugs to you


#15

Hello. I’m so sorry that you’re facing all of this. We all understand. I do not work full time now but I did for many years after my diagnosis. I’m fortunate now that my husband supports us and I don’t have to work.

When I was working it was hard but I found ways to manage my symptoms as best I could allowing for me to work. Things such as managing my stress. Adjusting my work station for my physical needs. Adjusting diet to foods that don’t cause inflammation. Essential oils help me a lot with pain. A heating pad at my desk. Lots of epson salt baths after work. Resting on my days off. Light exercise when I was able.

All of these things and much more allowed and still do allow me to manage my symptoms. For me it’s all about mAnagjng my symptoms as I cannot take medication due to my multiple chemical sensitivity. It was a long journey to figure this all out but worth it.

I’ve found that managing my stress really is a big factor in my fibro flares. It’s not always easy and I stumble and fall often. But I know what to do when that happens now.

Sending you good thoughts and wishing you the best in this journey. Hang in there. There are ways to live a good and happy life with fibromyalgia. We can all help one another figure it out.

Blessed Be.


#16

Hi Kittyboo, thank you for responding to my post. I am so sorry that fibromyalgia has taken over your life. It’s hard for me to imagine that you’ve had it for over 25 years. In my very little time I’ve had it, I have learned a lot from this website and all the wonderful people here who are so supportive. I pray that you receive all the love and support that you need from your friends and family and that they learn about you and your needs and about fibromyalgia. I pray that you find new friends if needed. Thank you again for your response.


#17

I have not been able to keep full time employment down for years. Recently I had a job that worked me full time for a few short weeks. I had to quit when the said they were giving more time. I was barely able to keep part time work. I would always be so overly exhausted that fibro fog and headaches would rule most days. I was able to do a fairly good job working but nothing else was coming out of me except for work and bed rest. I was a horrible way for my family to see me every day. Now that I am not working my fibro has been in a real flare up. I am glad I quit when I did. It has been a week sense I felt like I could write to any one. My pain goes and comes, but most days it comes in with a vengeance. When I say I am having a good day my pain level is just below a four on the scale from 1 to 10. If I have a day of 3 or less I feel as if I was healed of all malady. Lately it has been a 9.
I started to come to this group to find insight and to share what little insight I do have. But there are times when all I can do is gripe. I am really a positive person. Almost to a fault. Most people have no idea of the suffering i go through. In fact most people say I must have things going right in my life because of my positive outlook. A positive attitude is the only thing I do have control over. I can choose how I allow things to effect me or to affect me. I will never give up on finding an answer to all of this. Who knows what medical breakthrough may be coming our way. I know it is a hard thing to keep positive in the face of such opposition. But the battle will surely be one. At least this is what I hold on to.


#18

Hi Jean. I’m so sorry you’re going through all of this. I am also a nurse. I work full-time at a nephrology practice and my hours are M-F 8:30-4:30. I started having FM symptoms in Nov 2014 and was diagnosed around Feb/March 2015. Thankfully I had my current job and was no longer working 12 hour shifts in the hospital because there would be NO WAY I could do that now. As it is I struggle EVERY day to work full-time but I have no choice because I am single (recently divorced). Some days it isn’t so bad and then other days I can barely make it through the day. I don’t generally miss much work due to FM, mostly because I take tramadol and grit my teeth through it because I can’t afford to lose my job. I have definitely called out before when I just absolutely could not get out of bed without every muscle in my body screaming. Weekends are now spent recovering rather than enjoying other activities. I spend all my energy getting through the work week and then there’s little to none left to enjoy the weekend. :frowning: I wish I could tell you that this condition is something that passes but it’s still kicking my butt going on 4 years now. I’m sure you’ll find others here who have been struggling for more than 20+ years! I worry about my future because I support myself and woudn’t be able to live on disability - or even the mere process of applying for it. I hope you can find a job that is flexible for you. Wishing you all the best.