Life Changes When You Have Fibromyalgia
You then get an answer to why you were in excruciating pain. Eventually people start whispering he/she looks fine. You then get worse and can’t do what you used to be able to do from dancing the night away to actually needing to rely on people but also trying to accept that your Ill it ain’t going to last a week or a month or a year it’s there life.
You then start to spend more time in your bed than what you would in the lounge. Your bedroom becomes your living space. You spend nights either sleeping or awake tossing in agony and still people think your either being lazy or pretending your Ill or u can’t be bothered. You then start to lose some of your friends as you keep cancelling but still don’t understand what you are going threw. You feel your life slipping away in front of you and there is not one thing you could do. Your illness has changed the person you used to be.
To remind you that you’re not alone if you’re struggling with change, or grieving your “old life”,we have asked the question to our online Facebook community “Living with Fibromyalgia” and our group “Living with fibromyalgia and Chronic Illness” that What’s a lifestyle change you’ve had to make due to fibromyalgia? How has this change affected you?. Lots of member have shared their views and tell who fibro has affected their lives.
Summing up in one para would be like Every aspect of our lives has been changed due to FM. Lots of member said that they have to give their jobs due to extremeness of fibromyalgia Pain. Fibro also forces people to give up physical activities that they perform like exercising, socializing and even lots of ones have to give up driving. We have to slow down our pace to not caught the flare up.
Here is what community shares with us:
1. Resigned from my job a year ago. Moved in with family a few months ago. Could no longer handle my job duties because of overwhelmingly fatigue and cognitive issues. Now applying for SSDI, which has added to my anxiety and stress levels. Losing your independence is an awful feeling. – Cindy Lee
2. Had to change diet radically cant eat processed food anymore. Cant work even thou i want to so im on a disability pension feel useless now. Loved doing things now have pick and choose what to do. Cant go out much when its cold hurts too much. – Faya T
3. I’ve hard to change my life style completely, can no longer work, before all this I was very active, now going up a flight of stairs is enough for me. I miss the me I use to be !!. – Suzanne W
4. Trying not to be so hard on myself, easier said than done, I get very frustrated at things I struggle to do. Keeping on top of my studies is even harder so learning to appreciate the little wins is a big adjustment. – Fran K
5. I used to be the majorette coach/instructor for our local high school band. I attended all football games and competitions which required a lot of walking, along side all the physical activities of baton twirling. Four years ago I had to give it up due to the extreme pain and weakness I would have for several days following a band event. – Laurel W
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6. Fibromyalgia took my life away. Can’t work no more. I’m fully disabled. Can’t do a lot around house or in public. I have a walker. Tired all the time and so much more. Fibromyalgia took a lot away. I’m 44 in a 80 yr old body. – Paula J
7. My whole life has changed. I’m totally unreliable. I’m constantly cancelling appointments at the last minute. My social life has all but disappeared. I can’t keep up with my housekeeping and so much more… – Phyllis B
8. After 25 years of loyal working history, I had to quit do to Fibromyalgia. Taking a ton of meds only made by working worse. I barely knew my name let alone being able to work. My life gets worse day after day. And keeping the house clean has been a struggle. – Karen B
9. I used to be an active walker, active in the community and all sorts of things. I wasn’t able to work for ages. Thanks to medical cannabis and lidocaine infusions, I am able to work a part time job and enjoy life a little more. – Nancy P
10. Used to walk 5 km per day sometimes 10 if time permitted. Hiked every weekend. Attended cross fit training. Can’t do any of it anymore. Pain and soreness is overwhelming some days. Just walking around the shopping center for 30 minutes mean horrendous back pain and need a nap. I use a combination of magnesium oil spray and some essential oils daily on the bad spots and take supplements also. Certain foods cause an inflammatory response and increase the pain. So I now steer clear of lots of things I loved. I’m always tired. Need to have naps whenever I can. Used to love socialising. Can’t do loud noise or crowds anymore so I stay home. – Lynelle P
11. I used to be a non-stop gotta go get it done 24/7 kinda person ??my former self would definitely Not recognize this me!! I have had to relearn EVERY thing several times by now & I’m just grateful that I was able to get my legs back to working together and answering my commands again!!! But I never know IF I will be able to walk the next day, let alone how extremely shitty I feel for no apparent reason, except maybe weather moving in ? A lot of fun around here. – Coutney S
12. Had to go on disability. Had to stop my active life from giving up weightlifting, aerobics, going to the beach being outside in summer give up hiking. Giving up alot of foods. Being in constant pain m getting no help from Drs
Getting treated like I’m a drug addict for asking for pain Meds. Falling down a lot. Now I have to live with my daughter and grand kids because disability isn’t enough to live on by myself. It really sucks. -Sandra L
13. I still can’t accept that it affects my life. I keep reminding myself that I need to say no more, I “forget” how much I’m affected when I’ve overdone things. Then beat myself up when I feel so awful, wishing I had listened to myself beforehand. It’s hard because people don’t understand – the simple things like getting on a train, cleaning the bath tub, socializing is exhausting beyond words. I find it handwork having to explain all this stuff all the time. I think that’s the worse thing – the explaining and lack of understanding. – Hannah J
14. I have to be selective about where my energy is going to be used on any given day. I live a “if you do this, you can’t do that” type of life. Over time you learn that these choices – and in many cases missing out on things – can make the difference between a tolerable day or one where symptoms flare. Going without is far easier than dealing with a flare, every single time! – Linda J
15. I had to give up driving. I can not turn my head to look to the left. I have to turn my whole body. So, rather than pull out and hurt someone I just stopped driving. I really do hate being dependent on others to get around. – Maureen G
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16. I had to move from western wash which is very wet from the rain to eastern wash where the annual rainfall us under 10 inches a year. My body could not handle the wet rainy weather. Rain is the worst for me. My body is a human barometer! – Dorren D
17. Can’t work (pain and fatigue) can’t drive(brain fog and medication) can’t watch grand kids long (pain and fatigue). Cant take care of my house (pain fatigue and balance issues). It is depressing and disheartening. I feel like a failure as a human being. – China B
18. I use to do bead work, computer art work, drawling ,and coloring, painting cant do any of them anymore. House work and yard work are pretty much out , use to love to bake and cook a lot now I do good if I cook dinner , I use to be a substitute teacher now I am lucky if I can remember my own social and phone number. – Mellisa J
19. I was walking 4 miles a day, use to ride my bicycle, was going to gym 5 times a week, I was working 40 hrs a week, was playing with my grand daughter, now thank god if I am able to walk half miles, try my bicycle no way, sick leave of work, most of the time I cant take my grand daughter in my arm too heavy all my body is going apart. -Dorren
20. I have had to stop working. Originally I was out of work for a year trying to recover from a 2 week hospital stay. I started working again October of last year and bc I have autoimmune diseases as well I kept getting sick from coworkers and ended up missing a ton of work. In June I asked to go part time or longer hours and work just 4 days but I was told it would be in my best interest to take leave or I’d be let go. So here I am for a second time on medical leave. I have run out of money. My bank accounts say $0 in them so my boyfriend have to pay for my medicine yesterday. There are times where my legs are so weak I can’t make it down the stairs. Currently I feel like my body is on large bruise. I can’t get comfortable laying down because it puts pressure on my bones and its is painful. Just touching the area can make me cry. I walk with a cane right now. Sometimes I can go without but usually it’s always with me. I’ve lost 60 lbs in a years time and no matter what I do I can’t gain it back. I am 127lbs at 5’6. I haven’t been able to dry my hair in 2 months because it takes everything I have out of me. I used to be dressed on point and beautiful hair and make up. Now, I’m lucky if I can manage a shower. Going to festivals, walking around town even going shopping I can last maybe 30 min if I lucky. I also have RA, POTS, dyautomomia, they are positive I have MS as well but I can’t afford the test right now. I have a few other autoimmune diseases such as Ramsey Hunt Syndrome and one I always forget…it just gives me bruises and makes my legs swell so minor in my book lol. I miss the person I was. I miss my friends and family. Being able to just go out and sit and enjoy life. Now it’s all about researching where we are going to see how the seats are or do they have wheelchairs, is there some place I can sit. My life had become a series of buts and ifs. It’s become a place of sadness – Shawana M
21. Has to slow down and take frequent breaks on everything. – Shan S
22. I had to stop working at a office and start working in my livingroom with children. – Rita S
23. Had to have my daughter and her family to move in with me to help me with everything! – Bonnie M
24. It effects yr mentality as well as causes depression & anxiety as i do too much on ‘a good day’ then suffer for several days fatigue & pain make doing ordinary things seem like climbing a mountain. – Gill B
25. I moved 2000+ miles for a better quality of life and better climate. – Sharon J
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Click Here to join our group “Living with fibromyalgia and Chronic Illness” and share your thoughts with us in the comments section.
