Hi everyone! We all have something in common. FIBROMYALGIA! I was curious about what an “average day” having fibromyalgia, looked like to you? What does it feel like? Where is it located? How long does that feeling last? Are you able to work? I’ll start with myself. I’ve had Fibro almost 3 years. On an average day, I feel muscle aching to arms,legs, back and neck , joint pain, my muscles and joints throb, medium to low level of burning to arms, legs, back, palms and tops of hands and top of both feet. I also have a low tingling sensation to arms and legs. Off and on throughout the day I may have sharp stabbing and shooting pain to arms and legs. My average pain level is a 6.5 (0-10) scale. Since being diagnosed, I have never had a day where I wasn’t in pain. I am unable to work at a job.
For me an average day is probably not as bad as for some people. My biggest problem isn’t even the pain, it’s the other things like muscle cramps, sleep issues, exhaustion, itching, restlessness, weird smells, going hot and cold…I do have pain but it can generally be controlled by Tylenol and Advil. Also, I get these shooting pains like someone is stabbing hot needles into me! Can’t seem to do anything about those. I am able to work full time but only because I have a desk job, I wouldn’t be able to work if it required me to be on my feet all day, and even now I do miss a fair amount of work. It is difficult though because I am tired most of the time, I feel like I have to pretend that I feel fine when I don’t. I must be a good faker because my boss recently said “but you’ve been doing so well lately!” when I explained why I dropped out of the classes I was taking for a second master’s degree.
Hi Chameleona! What you described to me sounds very painful. Thank you for sharing your experience with fibromyalgia. It’s too bad we have to fake being well for other people. At least we can be real on this site without judgement.
I don’t know if my day is ‘average’ but each day is a struggle. My back is the worst thing, with pain and aching and sometimes it feels like it’s on fire. My neck and arms ache most of the time, plus my stomach is bad most days, and get pain down both sides of my body. Just a few weeks ago my legs decided to join in with the aching as well, all day and night. My headaches are every day with a few migraines tossed in as well. I get the sharp shooting pains as well throughout the day. On the pain scale I would say about an 8 most days, I don’t get any ‘good’ days at all, just slight decrease in all the pain.
We recentley moved to an over 55’s place and absolutely hate it, so we are having to look into moving yet again in the hope we can get some peace and quiet-don’t get that here. I think I’m permanentely stressed out.
Tough one for me to answer, as it’s all baby steps progress at a low level , which means my blog tries to answer it anew everyday, that and my new high- & lowlights of the week try to show the steps plus the blog-summary the overall progress.
I’ll try to put it in 2 nutshells. I would say that my fibro developed as Ache and tiredness starting 2011 and ended in a full flare Dec19, which I have been in since. My symptoms are very similar to yours, @Freedom, @Chameleona and @SueT. However what I thought was joints was mainly the tendons. Less burning and tingling, but also sleep, stiffness (which you just haven’t mentioned, I know), exhaustibility, many GI & bladder problems. Because of continual treatment (avg. 5h/wk) and self-treatments (10h/wk), mainly physio stuff and GABA, self-care, pacing (10h/wk of work, i.e. 20%) I have got all my symptoms down to usually 1 of 7 pain (my wife says 7 is other’s 12) and I say I am feeling 90% well most of the time, night and day (again my wife would considerably tone that down… [edit 90% → 50%]). If I’d stop all this and lived like I used to I would be back up to 4-5 of 7, which might be 7-8 on other’s scales. That’s why I consider this as being still in a continual full flare and not ‘healed’ in any way. I had been on sick leave for 10 months last year, then tested and found this level of work to be OK, but in March/April my sleep problems got so back I had to go on sick leave for a month again, but apart from that I’m pretty stable, my body is reliable enough. Thankfully it’s not a desk job, at least not one where I have to sit a lot, I need to be able to change my position regularly. Sitting is what I’m targeting at the moment. When working digitally at home I can lie down or change positions more often. Tiredness is a problem if I can’t sleep like I need to, esp. on the one day a week I have to get up early, so I’ve sorted out that I only have to get up at 9:00 at the earliest in 2 months. People apart from my wife can’t see my symptoms, so I tell them all the time. It’s not faking tho, it’s just that I’m a cheerful optimistic guy and have had pain all my life and got used to it and thus don’t need or want meds (which only harm me anyway). At the moment a lot of colleagues have been asking me, even regularly, so I’m getting into a routine for quick answers (at the moment “stable at a low level”), praps going a little deeper and then asking back “and yourself?” unless they want to delve out more details.
… Would you agree that this is still a full flare I’m in, or how would you describe it?