Balancing Fibromyalgia : Hi all. I just... - Fibromyalgia Acti...

Fibromyalgia Action UK
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Balancing Fibromyalgia

Hi all. I just wanted to ask you lot as you’ve been so helpful already and most of you have been dealing with this crap years.

So my question is how the hell do we balance staying active but not pushing to hard. Looking online we seem to have 3 levels on this thing. 1 side is the people who are wheelchair-bound and I feel so sorry for them and also worry about going that way then middle ground (that’s me) we can move about but too long and we feel terrible and fatigue stops us from pushing on. Then finally the 3rd side that seem to be doing it all! Working full time and hitting the gym and only feel bad with flair ups! God I envy those people.

The reason I’m asking is was I felt I had my balance right with locked in reduced hours at work and on days off small but regularly walks. Now however though nothing has fundamentally changed apart from really in a positive sense that I’m eating better I’m now struggling now to be mobile as I was!? I had to leave my job as can’t physically stand that long anymore. I’m getting out most days for small walks with our dog and the odd small shopping trip but I seem to be burning out faster now? From all I’ve read this condition shouldn’t get worst but here I am wondering what the hell is going on.

Maybe it would help if I gave my symptoms. What stops me standing or waking to long is my legs seem to get weaker and feel them spasm and then if I keep pushing my balance goes funny and also the strange thing is my glands feel funny too, though they always kind of do they definitely feel wrong when I keep pushing myself, that’s why early on they was thinking as was I that I had Glandula fever but nope fibromyalgia was my outcome in the end.

Many thanks!

Sorry for such a long post!

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Everyone with fibro is different. Some of us stay at the same level for many years, some deteriorate quickly, some slowly. I have had fibro for going on 40 years, maybe more, and for me I stayed at a steady level for many years, then went downhill slowly for a few years, and then quite rapidly over a short period of time.

Getting the balance right is hard ….. even now, after all these years, I still get it wrong. It takes a while to know just how much you can achieve in 1 day before hitting the wall so to speak, but you will get better at judging over time.

Others here will be able to give you their take on things too. xx

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Thank you very much for your reply. You’ve been dealing with it so long you are amazing. I think what makes it all harder apart from my own want to feel stronger and miss the old days of long walks and so on it’s people that message me like today for an update then ohh my sisters mums sister dogs owner has fibromyalgia and just finished a 5K run so there is hope! Plus the people that are posting instagram videos of them smashing it at the gym then here I am who was at the gym 3 plus days a week before this thing struggling now with moving a vacuum cleaner around. I just try and keep telling myself we are all different and it is what it is! And now my focus is on doing a job more suitable for me and so on.

Kind Regards

Chris x

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Chris, there is a saying about fibro and about what other people think of us -

"People don't get it, until they get it" - and that is so true. Unless you suffer from a chronic pain condition yourself, you just don't understand it, or at least most people don't. x

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It’s definitely true. Ohh well nothing to do but fight on and think about positive steps I can make moving forward. Thanks again for replying x

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Fibromyalgia has taught me to suffer in silence most of the time. It knocks you down like a bowling skittle and you have to pick yourself up and keep going. It is very difficult to balance.

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That’s what I’m doing these days. Just fighting on in mostly silence. Just when people ask me for updates on how I’m doing and clearly trying to be nice by saying they know someone with it and the do x y z and I’m like yer I can’t walk for hours let alone run 5K but happy for that person! We are all just so massively different with this condition. No wonder nobody gets it!

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Like mo says, we are all different in how fibro affects us and to what degree.

A few years ago, I managed to do a couple of 5ks and a 3k (walk not run) for charity..... My symptoms are pretty much the same level however I've developed a new pain in my feet ..... So I struggle now to walk 3-5 minutes .

It can be hard not to compare yourself to others .... Or even to compare with how you used to be .... But I've learned that you just need to accept how your fibro affects you now ... And find the balance that works xxx

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Thank you so much for your reply. Just seems so nuts to me even with all the best things I can do to help this condition after managing 4/5 months on reduced hours but was still able to stand and walk that long I’m burnt out after a 30/40 minutes of activity. Standing still is far worse then moving but that’s normal really. I find it definitely harder comparing myself now to the old me but also the me 4/5 months back still sick. Simply no rhyme or reason to this condition. Also the people doing all this gym stuff still. On the upside though my mobility is reduced I don’t feel so “sick” these days when not doing stuff. When I was feeling sick even when at rest that was rock bottom. I definitely found that was made miles better with better diet and pills I take now. Anyways thanks again!

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I think that's why fibro can be so frustrating ... There is no rhyme or reason to how it affects you from one day to the next. X

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Gosh am I glad I'm not the only one. I have been struggling with my appetite for about 18 months now, trouble is I'm diabetic. The main thing for me is hot dinners I just cannot face meat or potatoes or veg, tonight for dinner I had a cheese & tomato sandwich, no breakfast and cornflakes at lunch. I don't know what the solution is other than eat it or when you feel peckish even it's just a snack but make it healthy one. Good luck Sue🤗

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I can totally empathise with your lack of appetite. I’m very slight and have gradually been losing more weight due to feeling so yuck with fibro symptoms. It was getting to the stage that I dreaded going out for a meal as I just couldn’t eat it. My go referred me to a specialist who put me on a low dose sertraline. It has really helped my mood but also my appetite. I can’t believe it but for the first time in a few years I actually get hungry and enjoy my food. Even when I’m so fatigued and feel awful I can still eat. Perhaps you could try forgetting about proper meals for a wee while and just snack. My specialist suggested full fat yogurts and ice cream a good

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Oops - but you have the added problem of being diabetic. Please hi to your gp and try to get your eating sorted a bit. Although I am still in pain 24/7 and am fatigued , I am definitely stronger mentally and possibly a bit physically now that I am eating better🌈

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Please don’t give up hope. I’ve had fibro for many years. About 5 years ago I didn’t work, struggled to do my housework and some days I couldn’t walk, change a bed etc. I now work full time mon to Friday and help out with my husbands catering business on a Saturday and Sunday. I do all my own cleaning and laundry. I do however pace myself. It has taken years to know how much I can do. Gardening is still a problem especially bending to weed. Like you I sometimes cannot stand for too long. Queuing can be an issue. I am lucky that my husband cooks every evening so after work I don’t have too much to do. I am not sure that I am doing anything different to before though. A positive attitude helps which I know is difficult when you can’t move for the pain but I am much improved and living a near normal life. I do sometimes hit that wall and do nothing for a day or two but I now accept that as normal. I still have good and bad days but on the whole I am so much better now. So don’t give up hope, accept you are different now and listen to your body. Stay positive and try to enjoy what you can do rather than what you can’t do. I found a job where I am in and out of the office so I’m not sitting or standing too long at a time. There’s no lifting, bending or carrying either. I am lucky as we also have flexitime but some days are harder than others but I’m so pleased that I can work full time, I never thought I would again! Good luck, stay positive and don’t give up. Wishing you all the best 🤞😁x

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Thank you so much for your reply. I guess it’s simply all about pacing yourself as you say and in time I’ll find the best balance. I will find a more suitable job. The one I was doing was customer service and standing for hours a day and my body was just not up to that anymore. I’m staying positive and training myself in video editing now something I’d much rather do anyways. I’m very much into my photography and filming and am getting out for small walks and taking photos again but filming sadly has stopped as my bigger camera just tires me out. Trying to do any focused task seems to drain me massively, it’s very odd this condition. It’s not always about just simply a item is too heavy or the like, it’s like my mind gets upset if I try and do something too taxing for it. Anyways just got to focus on the future and see what’s next!

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Hi everyone is different. I have been struggling for many years and now I’m doing ok. I do not know what the future holds but I’m ok with that. I have accepted what will be will be and perhaps that’s helping me. If I can’t do something I leave it and don’t get stressed, angry upset or worried about it anymore. Most times it’s not important. If I have an event coming up I do less for a couple of days before and afterwards. Balance I think someone put on a later message and I will agree with that. Good luck and I hope you find your balance a lot sooner than I did 👍😁

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I think pushing is bad. We deplete ourselves and when we do that, running on empty requires eating into our selves. We can't keep doing that ad infinitum.

I love that there are fibros doing it all. I worry too that these dear fibros are not taking care not to deplete themselves. I worry they are next fatigued and frustrated fibros in waiting.

And somewhat looking down on their tired fibro friends that can no longer push.

Our society tells us that there is something very wrong about the person that wont fight themselves to work and play hard. That person is lazy, weak etc. BAD?

And for us burned out fibros, no longer able to push it is hard. Others look down on our laziness and pitiful efforts to keep going. We should do more. Stop being lazy. The monumental effort we make to walk the dog and get some washing up done in the day is not enough.

I know fibros like me that were busy morn til night and fit, super fit even and now we are not. Where did it go? In our heads we can do it all, and want to, but now our bodies can't.

I think that, with what ever fibro is, we cannot easily make up the energy we rob from our bodies. We struggle to sleep and heal. We struggle to eat and get adequate nutrition from our food. Overdoing esp on a regular basis risks our bodies giving up on us.

Time to start listening and caring better for ourselves. optimum nutrition, adequate sleep, enough exercise, etc. And of course the big ones... Contentment, happiness, fulfilment? Acceptance? Ouch!!!

Life isn't just some race/competition for money, status, a home and so on. Smash and grab! It is bigger than that. Fibro tells me life is about, taking your time, time to care, time for love, time to understand better.

Ever tried to rush a child? Chivvy chivvy? Gee, it's hard. Push too hard and there's a melt down, tears. It takes so long to pacify and comfort. I wonder do they understand what we don't? Life isn't just about the rushing.

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Amazing reply, thank you! I’ll find a balance in the end. This is all very new to me and I’m coming to terms with the old me is gone and the new me is here and has set boundaries I must take notice of or I’ll be worse off.

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Balance is good. Probably!

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I'm like you plodding along slowly going to aqua as often as possible I try Tai chi my balance as gone I do tend to fall over the Tai chi is advised for helping with balance it's all gentle exercises and your not pushed to do more . Went to aqua yesterday then shopping had a bad night and now I'm on sofa feel like shit had trouble driving home yesterday due to shoulder pain hard to change gear . I am so impatient if something needs doing it has to be yesterday not tomorrow I can't wait always been like this plus I hate a mess need to clean everyday I have tried to pace myself but I don't have the hang of it . Like yesterday shopping and exercise lol done too much . I was only diagnosed last year but think I've had it for years had a back injury in work which I'm assuming was the start of this problem most of the GPS I saw seem to think my pain was referred pain from the slipped discs and then I developed osteoarthritis every where had bilateral hip replacements now need knees but with all the pills and the reactions to the medication I have put on so much weight I have to lose it for the knees lol easier said than done . Most of our journeys are different and what works for one doesn't work for all it's a case of hit and miss . I have found that mindfulness meditation works for me not sure why lol . I am lucky to have an understanding GP now but her hands are tied I have tried all the pills and developed reactions to them there's nothing left to try I stay on cocodamol when I'm desperate heat pads hot water bottle tens machine and rest plus the odd exercise thrown in when I'm able . Just wish I could pace myself so I don't burn out . Good luck carol xxxxxx.

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Yes I think Moal61 says it all fibro is different for everyone , trying to get the balance right, I know there are days I feel I can do alittle more but differently pay for it the next day l I still try and pace like I am this morning setting tasks in doors for say half an hour then stopping with a cuppa, I differently come to a halt if I’m pushed too hard , had my little grandboys Wedsnesday till 7 o’clock as daughter is poorly seemed while I was focusing on them I kept going but when they left it was like whoal

, bath and rested took me over an hour this morning to try get in the swing of things but differently will be lots of mini breaks today . Like you I say for me the middle ground but I’m 57 so I have to take that into account, also have treated sleep apnea/cfs. My partime job was a gardener so had to stop that, but trying to little bits on my own that keeps me focused just takes longer. Have you any hobbies

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Thanks for your reply. A lot of this all just comes down to acceptance I guess. I will stay positive and do what I can, but be aware pushing to hard simply isn’t worth it! I’ll find the balance in the end 😊

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I'm a mid range Fibromite, but heading slowly for the chair! I already have one, but use it only for long trips or if I'm particularly wobbly. Mind you, I'm not sure where the Fibro stops and the Old Age kicks in! ( likewise Fibrofog and Alzheimer's! ) I'm 71.

Before I developed Fibro, I was a very active person, Walking, Riding Fencing, Rock climbing, dancing and Archery.

Now those are pretty much out the window, although I could probably do wheelchair archery, but I only have usable sight in one eye, so it may be a little hairy for others!

I am a fighter though, I don't let the Fibro win easily, I get angry with it and challenge it. I take Vit C, Glucosamine, and Cod liver Oil daily, and have Ibuprofen for everyday pain, with Codydramol for extreme pain. I don't have to take them often, My current prescription has lasted more than a year. My problem is with my doctor wanting to give me Seroxat every time I go there! I'm NOT depressed!

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Thanks for your reply. I just try and stay positive and do what I can. I’m 33 and this has stopped me doing the long walks and standing too long. I’ll find the best balance in the end, it’s just going to take time and a lot of patience, something I am very up and down with as just want to keep moving but have to acknowledge I can’t! Had a morning walk first thing today and done some cleaning about the house today and sitting down now as legs are being funny.

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The best advice I got from my doctor was "pace yourself" She knows how difficult it has been for me to slow down and I am only getting the hang of it after a few years. I now do what I can when I can with rest in between. I went from working 70 hours a week to a part time job then had to take early retirement last year. In the past I brought up 3 children on my own and helped care for grandchildren. Let anyone dare call me lazy !! Need a rest now after typing this !!

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Thanks for your reply. I’m 33 and went from full time work and going to the gym 3 times a week with a personal trainer to reduced hours at work, no gym and then gave up my job last month as simply couldn’t stand that long anymore. I’m focused on me now and getting into the best place I can and will look for a more suitable job, already started training on video editing online :)

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Hi StayingStrong85, l don't know what is going on with this damn illness,all l can do is make a cuppa occasionally,if l go out my husband pushes me in a wheel chair,which l have not been out for 4 weeks now,l feel so very low in myself,l just don't seem to have the strength that l had before, but l have not just got fibro l have lots of other illnesses to cope with as well, l do wish you well as you can be, but l.am sorry for carrying on.

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Sorry to hear that. I’ve managed to get out few times today but this weather isn’t helping as my legs are terrible today. We all just need to keep fighting on. It’s what we do daily! 💪❤️

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I do think that keeping moving, little and often, does help. Also this group is amazing wish I’d found it a lot sooner. No one had heard of fibro when I was diagnosed and there were no support groups either. The people on here will always help you with advice, suggestions or even to help lift your mood, they’re all fab 👍

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I have had well was diagnosed in 94 with fibromyalgia and CFS/ME. Over the years it has slowly gotten worse in the addition of new diagnosis stomach GERD, gastroperisis, Barrett’s esophagus, oh ulcers with H-pylori, ulcerative colitis, interstitial cystitis, neuropathy, chronic renal insufficiency, mild cognitive impairment, depression, thyroid goiters that turned to cancer in 05, well you get the idea. Fibro likes to invite other diseases to the party and with each new diagnosis brings compiling new symptoms which makes it harder to keep the balance. This has been my experience. Also some doctors diagnose people with “a little fibromyalgia in the shoulder” not meeting all the criteria’s of fibromyalgia like wide spread pain that has been there for 3months or longer, ruled out all other possible causes. So there is a group out there who are miss diagnosed with fibro who in reality do not have fibro. Working full time and working out at the gym everyday more than likely are missed diagnosed.

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I definitely suffer in silence for the most part! (Unless I’m on here then I have a good old moan) I do work full time and have two young kids. Yes I am lucky that after ten years I’m still able to do this however...it means when I am feeling naff people do not take me seriously! On the outside I look fine but every day is a struggle, I push myself to do the basics daily. This however means, I am unable to do the other bits! Like charity walks with work, nights out etc. I will occasionally attend a party or go out for meals but this has to be when I have days off after to recover! I also was going to the gym three times a week but that massively set me back, so now I stick with focusing my energy on work and home life. I think the saving grace for me is I was diagnosed relatively young, so I kind of feel like I’ve never really known anything else! I’m also considering getting a sad lamp! I know my mood and energy levels differ massively dependant on the weather, maybe something to consider?! All the best xx

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