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 others’ 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?
Hi JayCS! Thanks for your response. I applaud you for taking care of yourself and for exploring new and different treatments. I think you asked me if I thought you were still in a flare? I think the experience of having a flare is different for everyone. I would say you are not currently in a flare. When I have a flare, I can barely walk. I moan in pain. I have even stuffed my mouth with a sock to muffle my cries and moans so my neighbors can’t hear me. I can’t sleep due to pain. Basically, I’m incapacitated. Because you are able to function, for the most part, I would say you’re not in a flare but you have continuous fibromyalgia symptoms. I don’t know if I’m correct or not.
Hi Freedom, thanks for sharing and your opinion! Of course you are ‘correct’ in that it generally means a period of much pain, more than before, and the experience varies. And I’d also say: there is no ‘correct’, but as it has a lot to do with the answer to my question I’m wondering if we can find a way to agree on terms.
My question is still: If I am only functioning because I am doing 2h/day of treatments, taking certain supps, and pacing very carefully, and I wd be incapacitated like you are all day and all night very soon after I stop - what cd we call that state? I’m not really content with just saying I have continuous symptoms’, as these are much more severe than most.
Your examples of a flare shows how difficult comparisons are, like you say, but it’s all in your question: Before fibro I was at 40-55h/wk of work, energy activities 8-12h/day. Last year I was working 0h/wk, energy activities 1-2h/day, now I am working 10h/wk, energy 2-4h/day, extremely carefully paced.
So I could contend that I am only partly functioning (25%) and not ‘for the most part’ (e.g. 75%).
Cdnt I then say I am in a continual 75% flare? - which seems to me a pretty big portion.
I’m never completely incapacitated because I always have some residual energy, which lets me do things for a few minutes, peculiar to my type of fibro and almost always there, flare or no. So whilst a ‘real flare’ means it’s best to stop all energy activities, I don’t then ever go to bed, except to sleep, I do ‘fibro-work’ or write mails, lying down or slouching against my couch, because that - thank God - lets me enjoy life despite a lot of pain. I(‘d) do that even with a pain of 7, which as I’ve said my wife says is others’ 12.
My pain scale: More continual moaning and crying out or crying is what I do at a pain of what I call 7 (8 for me is crying or crying out a lot, 9 is no longer being able to do that and 10 is jumping out of the window), but I am already incapacitated at a continual Ache of 5 - which by the way is caused if I sleep under 9h for more than 2 days, or in March / April where I was on sick leave for a month even 10h wasn’t enough to get the Ache down…
The image (of course) is one of a flame that suddenly comes up or comes up again. I’m thinking of a gas furnace/boiler or gas oven, where you ignite gas with a spark and a flame flares up. The spark is a trigger, the flame is the symptoms, the gas is the fibromyalgia (or other chronic illness). In my present case the gas is present all the time, everything I do would spark a flame, but my treatments dampen the sparker and also somehow subdue the flame (anyone got a suitable image for that subduing?), pacing keeps the sparks small enough that only small flames come and infrequently enough that I can rest (quite a few a day tho, e.g. after working, after table tennis, after a rough night).
Any further ideas? Hope others’ll join in, cos I’d like to be able to describe the state I’m in better in a way that everyone can understand, and I do get it that what I’ve always meant by a ‘continual full flare’ is what I would have without treatments & pacing. I cd of course just say I “would be” in one or I am in “a sort of” one… but I’m curious…
Hello JayCS! I have been thinking about how I answered your question about being in a Fibro flare. I read some of your posts and thought to myself “ Oh, JayCS is definitely in a constant Fibro flare.” Then I just read about the furnace analogy. You described it perfectly! As strange as this may sound, I wasn’t factoring in ALL the types of therapies, medications etc. that you partake in and STILL suffer the effects of fibromyalgia. Imagine if you didn’t do this? Ah! Or ouch! . Can I blame my answer on Fibro frog? . Have you ever thought about writing a book about your journey with fibromyalgia? Your experience and knowledge would be so valuable, especially for men. I could see you writing about how long it took you to be diagnosed. How have friends/ family been helpful or not? And what treatments, medications, exercises, therapies diets have helped or not. I live in Illinois and man, are we getting hit by tornadoes today! Sorry, I just saw another tornado warning of TV. I better go!
I wish my hubs could understand about the pacing, i need to pace both physically and mentally, but i could explain that every week and he still would not understand that…i got him through a very rough hospital stay and surgery this year and after care…and have not fully recovered but he still only talks nonstop about medical stuff… even tho he knows i will avoid appts like the plague because i do not feel like using my energy that way.
Understand this disease is just impossible for people who do not have it
Oh dear, hope hurt & damage stays limited and fairly reparable …
I’m still not too sure about the term 'flare’. It means that “the flame” is quite a bit more than usual. So relative. In comparison. But compared to what?..
Inspired by your tornadoes, I think a (bush) fire may be a more helpful image for the continual aspect. Also because home fires (furnace, oven etc.) are made to be well controllable. The fibromyalgia is any burnable substance, let’s say dry wood now. The subduing is the firefighters . Now in most of us the fire is kindled when it was first set off and at least glimmering or burning a bit all the time. Pain killers and sleep meds etc. are the chemicals used by firefighters to dampen the fire, which may be quicker to suppress symptoms, but have quite some side effects. All other treatments (psychological; physiotherapy; diets; changing the surroundings; supps & herbs) can sometimes work in that way too, if they don’t fit, but it happens less and isn’t meant to happen. They are trying to be like the firefighters removing the dry wood (triggers, e.g. diets, surroundings), quenching flames with water (physio, supps & herbs) or by removing air (psychological, physio, supps & herbs).
Back to flares: In a few rare cases, the fire is quenched, no more or only occasional flares which wdnt really be seen as such. Some have a bit of fire, don’t have to do much to keep it under control, can have more flares. Some have a lot of fire, under control or no, flares the less they have it under control. Etc.
I’d say I have “a lot of fire”, but use everything apart from chemicals (because these increase the fire) every second of the day and night, so I have quite a lot of and very slowly increasing control over the fire and over additional flares and can lead a happy life, altho a lot of it is “consumed” (like the pun? ) by keeping it controlled. That makes it not nec look like a ‘continual flare’, only like a small fire - not like the ones at home, but a bush fire that can break out fully anytime, but may not be left alone for one second. However if I now stopped treating it that intensely, it would fully consume me. Continuing the ‘consuming’ image: one part of my life is consumed by the symptoms, a 2nd by getting them more under control, thru which a 3rd is “feeling well”. Not sure - let’s say 40 / 30 / 30%.
But back to the flare in comparison to the fire: When I have worse hours or days or weeks than usual that is a flare relative to the “normal” fire, agreed. If we compare ourselves to the years before fibro, then a fire is praps the right word. In my case a blazing fire. And I’ve just now realized the reason why I started calling this a continual flare: Because since Dec19 it was a continual blaze and I never had any good days, so I cdnt discern flare from not flare, like others could.
Due to the treatments I've been slowly getting the blaze more under control...details:
A few good days in the summer of 20, after starting cryotherapy. But a break from that due to clinic Sep20 and harmful physio-treatments there brought me back to the old blaze. Nov & Dec20 I started work, and newly starting acupressure managed to keep all days OK-ish, meaning pretty bad, but not totally bad. Jan21 was good without work, Feb21 first good with a lot of digital work, then I “broke down” for a month March to April, the treatments cdnt get the blaze under control, or actually flared it up more. After that slow baby steps.
No need to blame your answer on the because ‘flare’ meant for you what is visible, and I think many people think of it like that, so it’s a welcome point of view to grapple with.
Writing a book?: Well for me my blog & references are book enough for me. I am actually already writing a lot all of the place, in forums and otherwise, about the fact that I think there is hardly any difference between male and female fibro, how I got to my diagnosis, that I was very lucky that my friends were helpful in helping me much better than docs at finding good treatments and that my wife is … usually … very supportive and the treatments that help me. The thing why I don’t think a whole book would be helpful for other people is that I have various unique symptoms and treatments, that don’t seem to help others, or they are simply not prepared to, so I feel a bit alone, walking my own path and hoping that people can glean a little bit out of what I write: My answers to their specific problems, my blog showing my path, my cause, symptom and treatment lists. I would also wanting to continually update what I write, like I do on the web. I know some people like reading books, but at the moment I don’t think I’m the right person to write one. But thanks for the kudos