I have had a time let me tell ya. I was diagnosed summer 2016, however I do believe it’s been about 5 years living with this. I lost my good paying job because my fatigue a brain fog was so bad I would miss days at a time from work. My family is not as supportive as I desire them to be. I went from being a supporter of others to retreating to my bedroom on a regular basis. They don’t get it. It really hurts when people say, “ You’re stronger than this. Push through. They don’t understand that the more I “push through” the more exhausted I become. I had to quit yet another job today because my stress levels and my fatigue just would not let me move forward. After being off work for 2 years i thought i was finally ready to get back out and try again. Boy was i wrong. I struggled daily for the this past month I’ve worked there. It was so many factors at the workplace that made things very difficult for me. The main 2 things were 1. We are in the summer months so the ac is cranked to its highest setting. No matter how many layers i wore, my 8 hours were spent shivering and trying to focus through that. 2. We only got a 30 minute break from the stress of scheduling patients and overworked coworkers. So i had to eat, regroup, make doctors appointments and give my self a pep talk all in 30 mins. This was very difficult for me. I did inform them that i had fibromyalgia but many people don’t care enough to research or ask more questions as to how you are affected by it. Even when you begin to explain they don’t understand and most time i get the feeling that they could care less. Moving on from that, at this point i feel extremely lonely. Hubby is saying you GOTTA try and do better. I need your support because we are drowning in debt. This makes my stress and pain WORSE. I am currently off all fibromyalgia maintenance meds. I was put on cymbalta shortly after being diagnosed and it completely ravished my life. At diagnosis I was 189lbs i stayed on cymbalta a little over a year and by the time i was taken off i was a whopping 106lbs. This fibromyalgia journey has been pure hell for me. The only way I’m am surviving is holding on to the mighty hand of our God and father. My faith is what keeps me strong. I am so happy i found this group. Reading over some of your stories makes me feel now that i am in good company because the people I’m surrounded by just don’t seem to understand.
I’m so sorry you are having such a hard time. Fibromyalgia really sucks! I too had to stop working due to mine. I struggle everyday but my faith gets me through. This support group allows me to talk to others with the same issues and allows me to be frank with what I’m feeling.
Welcome to the group and know I will pray for you
hello Queen and welcome. I have had fibro 38 years, before anyone except a couple of doctors knew what it was. I started self-medicating with aspirin. BAD idea. anyway, i was disabled in 2004 very quickly with this diagnosis. some people wait a long time. mine was within a couple of weeks. What really caught my eye in your note was the air conditioning. I cant stand it. of course, i’m retired now, but set my air at 73 for my cat and company. that means i usually wear a fleece lined flannel shirt every day over my regular clothes. NO, “they” don’t understand. I had very scarey hallucinations with Cymbalta AND with Savella. gabapentin nauseated me so i could never reach the “right” dose.
Right now I am on a narcotic and anxiety med. I’m afraid to go to bed at night because i know morning brings stiffness, pain, using a cane, ice, meds, and being totally worthless for about 3 hours. I’ve also had financial problems - in the course of one year i had a divorce, my house foreclosed and i filed a bankruptcy… I simply could not work at a high enough paying job to pay my bills.
could you and husband go to a debt counselor? is there any type of work you could do at home? i wish I had a magic wand for all of us. carolyn
Thank you soooo much for all your support!
Although it doesn’t change my situation, it’s so good to know I’m amongst people who have Walked where I am strolling now. May God keep you in the abundance of his love. Prayers up for you. I ask that God sends EXPEDIANT healing to all of us in Jesus name. Amen!
Queen, it sounds like you have medical/insurance experience. May I suggest looking for a telephone based member services job in health care or prescription insurance? That way you’re not face-to-face but you’re making the most of your skill set. Maybe claims processing would be a good fit? Something to get you out of direct contact with people and out of smaller offices. Smaller offices always seem to be more stressful than larger employers/call centers/claims processing centers. Also, in all of things I’m suggesting you typically sit 8 hours a day, much easier than running back and forth around an office.
We often find that, unless you have this disease it is reeally hard for others to understand it…we look healthier than we are…
People mean well when they say you have to push, without any idea how hard that can be at times…
Am actually trying to push some right now, because i was in flares from weather so much, that i feel weakened.so i am trying to get my muscles strengthened some…by pushing i just mean moving more in general…not sitting as much…
Hope you can find some work that is less stressful for you
Do you use supplements?