Found my way here after a doctor suggested, or rather insisted, that I find some type of support or expressive outlet. I’ve gotten used to keeping most things to myself, but its been harder this year and I guess it’s starting to bubble over a bit.
I ended up with Fibromyalgia in my early 20’s, after a case of what was deemed to be food poisoning in 2013. The nausea passed, but the pain in my legs became so bad I couldn’t really walk. The pain never completely went away and 6 months later I was finally diagnosed with Fibromyalgia. I continued to experience more symptoms like fatigue and allodynia, the pain moved from my legs to my whole body. After a couple of years I was experiencing symptoms less often and kind of established a new baseline normal as it were. I was able to be a full time student, work multiple jobs in addition to volunteer/sport commitments, and could handle the stress and long days (not really, I’d fizzle out month or so, then every couple of weeks and by the time I graduated it was complete burnout). Point being that this is the standard I’ve come to hold myself to, and is also how a lot of people in my life see me too.
Last summer (actually almost 4 years to the day since I’ve had Fibromyalgia) I ended up receiving a rather bad concussion. I experienced the typical post concussion symptoms, light/sound sensitivity, confusion, brain fog, fatigue. Less than a month later I was diagnosed with Freiberg’s disease, which had been causing the pain in my feet and unfortunately has no easy solution. So when some of symptoms stuck around I assumed it was related to stress. When the symptoms seemed to come back and get worse doctor’s assured me that that couldn’t be the case. In December these cognitive symptoms and the Fibromyalgia got worse again, took me till February to realize that all of this was my Fibromyalgia coming back full force.
Coming to terms with this (as well as the Freiberg’s) has been extremely difficult. I just started my MA this year, I have to maintain a certain average to stay in and trying to focus on/do the work is getting harder. Things that were once relatively easy are now a challenge. Coming to terms with the fact I may not be able to reach career goals as a result of these new symptoms has been upsetting. I find I’m becoming increasingly apathetic. I’m also becoming increasingly isolated. Work and school are mainly done from home/an office by myself, many of the people I used to have as supports aren’t anymore. I find it difficult trying to talk to my family about any of this, usually end up feeling dismissed and frustrated (they do try, it’s just not helpful to me). It gets harder and harder to open up about anything, I hate being ‘the sick person’ so I tend to lie about how I actually feel for the sake of polite conversation. This probably doesn’t help things are people now just assume I’m always fine and don’t really listen when I try to say I’m not. Just kind of at my wits end I guess.
Ashley, welcome to the Fibro community. I’m Seenie, and I’m a volunteer here, working across all of our communities as a resource person and a trouble-shooter. I rarely participate in community discussions, but your post really resonated with me. (I don’t have fibromyalgia either: I have Psoriatic Arthritis.)
Every day I “hear” (read) very similar things to what you said, on every one of our communities: I’m alone, nobody gets this, friends have disappeared, family is impatient with me, I don’t talk about how I’m feeling because I sound like a complainer … and on and on. Of all the problems that people with rare diseases and conditions have, the feeling of isolation is probably the most common. Fortunately, that’s what we are all here for: you are not alone, and your peers here can help you cope with what you are going through.
If I could make a suggestions: start reading threads and participating in the discussions. That’s a great way of “meeting” people! Over time, you’ll get to know individual members, and forge supportive relationships with them. It doesn’t happen quickly, but the friendships I’ve made on Ben’s Friends have truly enriched my life.
On your profile, you say that you are in Canada but your region (that would be province) is “CA”. Not sure where that is. Calgary? Calabogie? Your location is important here because often people share resources and names of professionals who might be able to help. Let me know and I’ll fix your profile.
We’re glad that you found us, Ashley, and we hope that you are too.
Thank you Seenie. I’ve fixed the location on my profile (I think), I’m currently living in Saskatchewan. Thank for the suggestions, I’m definitely glad to have found this community.
Hi Ashley - its been a long NON-prodductive day for me, so will just write a note.
I have had fibro 38 years, starting out like you doing everything and at this point am down to nothing. I am older than you, that is meaningless when life says You can’t DO this anymore. I miss gardening, traveling, basketball games, picnics…all the things i used to do. For example, yesterday my daughter wanted to pick me up for a short “trip” which was only about 3 hours I said I just cannot tie my shoes and get in the SUV. to which she said, Come ON mom, stop using excuses. When we got home, i fell on the bed and cried myself into an afternoon nap. Read the threads, dont be afraid to say how you are feeling, and God bless you tonight. Carolyn in Nebraska.
I’m sorry it’s taken me so long to get back to you; life got a little hectic and replying to messages always seems to get pushed back. I really hope things have improved for you and that your daughter especially has shown you a bit more understanding. It can be hard to explain to someone who has no frame of reference that this isn’t an excuse, that your definition of exhaustion and hers, for example, are two very different things. Hope you’re feeling better
hi ashley, i just happened to turn on laptop and got your message i hope anyone reading this has had something, big OR small, that brightened their day. I have fiinally had to get 1/2 day a week of household help --and that was today. so vacuuming, laundry and dishes are done. This morning I could barely get dressed or walk…but i have lots of orioles eating grape jelly, lots of robins and finches to watch. I got a few odds and ends done and pain level is down from a 9 to a 5 so that’s a few hours of “relief”. I have a lot of unread threads and maybe tonight is a good time to catch up. Ashley, i am hoping you feel a bit better…it took me YEARS to understand that I really could not do everything that I wanted to. Your previous post sounded so busy, but sometimes that overloads us. Each of us has to learn for ourselves. SO happy to hear from you. carolyn
