Hello! I was just diagnosed with fibro this month. I’ve been dealing with it for years, but my symptoms lately have gotten worse. I am finding that I am having difficulty coping with an increase in pain and exhaustion. Due to my financial situation, I must work two jobs, adding up to more than 55 hours a week. I often work 7 days a week. I know that I can’t keep up this pace. I am 35 years old and in my mind I should have the ability to do all kinds of things. I end up frustrated and depressed when the fibro prevents me from achieving the life I want. I just started taking Cymbalta, so I hope that will help. I know that I need to change my expectations of myself. But how??
I am also struggling to explain fibro to my family and to my boyfriend. I am pretty sure my mom thinks it’s “in my head”. My boyfriend is supportive, but he seems to think things will “get better”. Any recommendations? I looked up the “Spoon Theory” article and will have them read it. But I don’t know what else would help them comprehend.
Thanks, all! I look forward to being part the community!
To try and get them to understand, when you come across an interesting discussion on here, or an informative article, print it out and share it with them. But try not to bombard them with all the info out there.Be patient, because after all , we ourselves still have a hard time understanding this illness that we live with everyday. They are on the outside looking in. It’s often difficult to explain exactly how we feel at any given moment. Hugs
I was diagnosed in 2010 and still struggle and fight myself when thinking I should have the ability to do the things I need/want to do despite my body. It is difficult working full time and not having time to rest during the week due to work and work demands. One thing I have found helpful are Bubble baths; it allows your body the time to unwind and the hot water really helps with the pain and muscle tension. Meditation works for some people, but I've tried that and it isn't my thing. You have to find a routine that works for you and remedies that make you feel better. Since this diagnosis is so elusive and unpredictable, you have to have a plan A, B and C and mix them up at times. Cymbalta didn't work for me. It made me feel worse, but I hope it provides relief for you.
As far as explaining it to your mom and boyfriend, I told my husband this, "Imagine a cell phone battery. Most batteries recharge fully over the night and they are set for the day until their battery runs out. My battery doesn't EVER recharge and I am left at half power. Because my muscles and body are in pain, it uses the little energy I have to begin with faster than normal. Regarding the pain, imagine having a headache, but the headache is all over and moves around to different spots all throughout my body. I call it a little "monster" jumping around my body poking me with pain". This really resonated with him and he seemed to understand. The most important piece is to make it relatable to something they can understand, like a cell phone battery or widespread body headache. If people can't relate, they can't understand. People will never truly understand what we go through, but can try.
Hi, Laurie. Welcome.
It can be really difficult when family and friends do not understand Fibro and Fibro pain. The article Moderator lovett suggested is a wonderful resource. It really helps explain how we feel and how we cope with an invisible illness. It has a great empathic tone that is sure to resonate with loved ones.
Welcome to the site! I totally get how frustrated you are and it is an overwhelming situation to be in at your age. I am 29 and had to go on disability because my pain prevented me from keeping up at my fast paced job. So, I have a few recommendations. First, try to see a therapist to discuss how devastating an impact this has on your life and to discuss how to adjust to your new body. My therapist stated that this is the “new normal” and I would have to learn and adapt to my new body’s feelings. Second, I understand having financial responsibilities, but you make plans for if you can’t work 55 hours due to a flare up or worsening pain. For example, I have talked about selling my house and moving in with my parents (yikes). You will find treatments that help, I use Salon-Pas patches, Tiger Balm, and Sombra for topical pain relief but those may work different for you. Third, exhaustion is difficult to deal with, but I would recommend getting really good sleep, and using supplements if you aren’t able to. Also, taking Vitamin B has helped me stay energized when I need to. Lastly, do what you can to get your family to understand, because you need to have their emotional support for tough times. My brothers do not understand what I am going through but at least they are willing to accommodate my requests anyway.
I am really sorry your pain and fatigue have gotten worse, but you have to stay positive and look forward to the days when you have little pain. I hope Cymbalta helps you, it definitely decreased the amount of pain I have. Good luck and I hope you get the support you need.
Hi Laurie B, it can be difficult to explain to others what having FMS feels like. The spoon theory you mentioned is good as is the article on chronic pain Lovett mentioned. I have also used the analogy of "it's like having a toddler throw a temper tantrum inside your body" to explain what it can feel like. That seems to resonate with some people and they understand a bit more. One of the hardest things I had to learn was how to pace myself more, I had to learn to say "no" sometimes as I just can't do it all anymore. The more "me" time I have where I can relax, take an Epsom salt bath, read a good book, etc - the better I usually am at managing life's demands on top of the Fibro. I am glad you have started a medication and I hope it works for you. Sometimes it takes a while to find a good medication combo to help with symptom management and there is no one size fits all solution unfortunately. And welcome to the community - I look forward to getting to know you more! Hugs!!!!!
Just sending hugs, as you have already received some excellent support and cool ideas to try. The path of fibro is not an easy one, but I sense a lot of strength in you, and wish you the very best! ST
