Warm greetings everyone! I am writing a research paper for one of my college classes and OF COURSE I chose the topic of Fibromyalgia because, well, I know very much about that topic first hand! Any input that any of you would care to send my way in regards to how Fibro affects your day-to-day life and what about you has changed comparing pre-Fibro you vs now you, I'd very much appreciate it!
Sub-topics:
- How has Fibro changed your job/occupation
- How does Fibro change your home life (chores, sleep habits, sex habits, or lack thereof!)
- How has Fibro affect your day-to-day mood and physical health
- Social Life?
- Daily routines, is it getting harder to get dressed and ready each morning?
- Any digestive disorders that came with the fibro? Do you find yourself preparing more simple meals?
Hi . As for me I just want to say that fm was not my primary diagnosis . It was either at the same time or an add on . I have been disabled for 30 years, 10 years bedriddened and then have been very homebound but not bedridden . From my years of experience and years of knowledge many people with fm have different levels and degrees . Some are totally disabled while others can function normal lives making various life style changes . I hope this helps some and much good luck with your paper!!
HUGGGGGGS
Suzie
I have good days & bad days. When I moved to this new place my daughter & I decided to make the living room my bed room. Sometimes I trip over nothing & fall. Being in this large room insures that I won't swonk my head or ding a body part on furniture. Some days I try to do at least 1 chore/dy, & some days I am lucky to get out of bed. : I am on 3 Meds that put me to sleep by default (aka-side effects).
It is a vicious circle When in pain cannot do a Dadblasted thing. Not able to do a Dadblasted thing lowers self esteem. Low self esteem becomes depression. Depression makes me to Not want to socialize, who wants to hear me groaning & complaining?
I have 1 Med that makes me constipated but, I would rather be constipated than be in pain.
Glad to hear you are able to share your (and our) experiences in your college class. Any outlet we have to spread awareness is fantastic! As a young person with Fibro, my life has entirely changed. I feel like a totally different person. I carry around pain meds and supplements constantly. I swear people look at me like I'm nuts when they see me take 6 or 7 pills in one gulp. Recently I have been having a very hard time with limitations in the work place and my social life. I've been struggling in my job to maintain previous success and meet expectations. I am calling off work more, struggling to remember small details, and overall not as eager to work as I used to be. I am constantly terrified these days that they will fire me because of my struggles. I went to college with all these dreams of my career. It seems impossible to accomplish those dreams anymore. My social life is pretty much non existent anymore. I have my few friends who are amazing and understand. They are okay with watching movies and staying in. Of course at 25 though, most want to go out to party, drink, dance and do normal young things. If I were to spend one night even trying to be like them, not sure I would survive the pain that follows. Those are the friends who slowly stop understanding and disappear. Thankfully I am lucky enough to have a boyfriend that understands. He has had a taste of chronic illness himself so he understands my restrictions sometimes. I know that he does get frustrated with my lower libido but he tries not to blame me. I can definitely understand how a relationship could easily suffer from this disease. I am also blessed (haha) with IBS which has not been a fun addition to fibro. I am on the low FODMAP diet but still am not able to eat without getting sick. I have very strict foods that I know are safe and grocery shopping is always a pre-planned ordeal. I carry lists and use apps galore on each trip to make sure no ingredients will make me extremely sick. Fibro is no doubt life changing and we each struggle in our own ways. I hope all of that helps! Best of luck on your paper!
After several very painful and long lasting flares I have put all of my attention to managing my energy and fatigue. I have an activity chart and I rate my fatigue and pain every day as well as my fibro fog and I have learned that some activities are worse than others and that fatigue tends to have a snow ball effect. If you keep pushing yourself when you're tired than you will just collapse. I can be in bed for three to four days sleeping 14 - 15 hours. I have become super vigilant about how I spend my time and energy. If I want to do a social event one day (drive,go for coffee and chat and go to the movie) I will rest the day before and make sure I have nothing planned for 2 days after. I need two days to recover. I do not make many phone calls because even though I enjoy them they suck energy from me. I find texting and messaging on face book easier. It is easier to break off conversation. My mother was living with me and recently moved out. I discovered that just having her chat every time I walked into a room zaps me. It took her being gone for a month in her place to make me realize that. It's so hard to explain to friends. They are understanding but I wish I could do more with them. I feel like I have this chain on me and I am yanked back constantly whenever I try to have too much fun.
Thank you everybody that has shared your input! My paper is due tomorrow, May 4, 2016, and I am still very hard at work trying to complete it (i will probably be up all night). Ironically my Fibro had set me back a few days but I am pushing through the pain and fatigue to get our story and experience out there. I deeply appreciate having a family on here that I can share my life and all of its struggles with without feeling judged or hearing the multiple "suggestions" offered by those who don't understand what it is that we go through. Gentle hugs and thanks again! -Jessie :-)
I have missed work due to flares, have to adjust where/when I meet with families (I’m a social worker), my memory is horrible, my sex life is in the dumps because of chronic pain and fatigue, I have IBS with mostly constipation, horrible reflux, RLS at least 3x per week which consists of excruciating cramping in legs and toes, my family life suffers because I am unable to do things with my kids, my social life is pretty much non-existent outside of work…
I try to keep up with some things I enjoy like teaching Sunday School. I am trying to get my LCSW as well. I just keep plugging get away. My husband is supportive for the most part, my kids have a harder time. It definitely takes a toll.