I don't know what I want from people.. But when I mention my back.. Or knees or thag daily iam exhausted!! I'm reposnded too with.. Yes I'm tired today too, or didn't you sleep well. My aches... Responded too with, maybe some excersise... Ooo kick boxing with me next week!? Or yea, my back hurts today too.
I don't feel any one understand, and it's bringing me down.. I don't want to see my friends and be told the same again.. They hurt or they're tired... Its not the same...
Am I being silly? I feel stupid.. Like I'm eggagerating my things kr something
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Tazmania-ems
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Hi Tasmania-ems. People don’t understand but how could they if they’ve never experienced the condition? It sounds like your friends are trying to be nice and helpful but I understand that it comes across as dismissive of your pain. I try not to talk too much about my condition to other people as it is difficult for them to understand.
I am similar in that I have lowered my expectations of others long ago. It's nobody's fault that they don't truly understand. I will simply say "sorry today is a bad day for me, I will miss you though" and that's that.
Which is why I've stopped seeing them... Isolating myself so I'm not the miserable one in the corner being tired and in pain... Silently. Which is the issue.
Totally get what your saying, the reaction I get from a certain friend who dosent ever really listen to what I am saying that chronic fatigue is different to being over tired. If they would just pause for a minute and have some empathy or even take time to read up on fibromyalgia might just sink in what some people go through on a daily basis. Xx
On of my friends is always telling me to come boxersise... Or dance class or trampolining class! It's too much.. That wud kill me for days.I feel I'm iscolaing my self more and more.
I like the.. Its a bad day for me idea.. Maybe better than I'm in pain or tired x
I will just tell my friends to Google it. I think many of the public do now understand more about what chronic fatigue means, thanks to the long covid sufferers, and the condition being talked about in the mainstream media, especially when some athlete or other well known sports person speaks about how it effects them. So probably chronic fatigue is a good aspect to mention as part of one's condition to friends. They have also heard of frozen shoulder so that term could be used to get across how painful any movement in a joint can be. Although it was only today that on my first visit to the physio that fibromyalgia was the label put on what seems to be happening in to me, but when I actually look back, I think it's been creeping up on me since last year and I just attributed it to worsening with age ongoing management of neck and shoulder damage in all crash 16 years ago. There are so many physical jobs now that I have put off 'til tomorrow' when supposedly I will have more energy and feel body stronger.... put off since last year??? Now I did have a terribleness loss of best friend late last autumn... so of course grief was another legitimate excuse for being wiped out... not to mention covid. attending a funeral where only 15 people can attend and limited to half an hour all going our separate ways after is surreal and leaves one wondering where the world one thought one knew has gone, lockdowns, isolation etc etc... but even walking over winter I remember thinking how stiff I was becoming, how drained of energy after only a few hours of activity, how often I actually lay down and often slept in the afternoons, and how when the lockdowns ended and I could meet up with friends again, they would have to understand how I could not hike fast, just plod! Or why the house was not all cleaned and windows washed! Strange how I never considered something was happening until the big flareup about a month ago. Now at least having a possible name for it,. makes me feel less guilty for all the jobs I have led slide! But I do understand people's reticence to get caught, out on a social occasion feeling the battery has died and pain taking over. . Even since my crash I am afraid to commit to anything on a certain day because I will often wake up feeling that day ' I can't do it, I haven't the energy today, I'm going to cancel'. It's as if one's body is afraid that you are going to ask too much of it and shuts down in advance to avoid the threat!
Hi I was diagnosed with Fibromyalgia 5 years ago but like you I feel now that it was creeping in years before that. I had noticed on my dog walks that my legs were getting painful and I was struggling to walk as far as usual. At night my legs would be aching and fidgety . As I stood a lot in my work I put it down to restless legs. Looking back I had several traumatic events within a relatively short space of time , redundancy ,my mothers severe stroke ,a neighbour from hell, and my mothers subsequent death. I had brought my children up on my own so had also always had the worry of finances and as being the only bread winner always had that pressure and rarely took time off work when I’ll. I think my body just caved in and the with me it was Fibromyalgia that hit .
I am told that we have to pace ourselves. I think perhaps I should have paced myself more , years ago , before the Fibromyalgia but life doesn’t always allow us that luxury .
True.. fibromyalgia is not widely enough known about as a reaction to a trauma or ongoing stress.. I think the general public should be more informed by public health awareness campaigns about it as it's so limiting on lifestyle and independence once one has that first real flare up. People understand about rheumatoid arthritis being a physically limiting condition but I certainly had no idea what having fibromyalgia meant! It could possibly be avoided by many who get it if they knew the early physical signs of being at risk, the signs that one's body system is heading that way, and put resources into halting it getting to the serious stage ie some sort of lifestyle changes and just being mentally aware that one needs to take up swimming or yoga or join a walking group etc anything to reduce the life pressures on one to head it off reaching that first flare up stage. Obviously it wouldn't work for everyone but I do think it could work for many. In my situation I think I could have avoided it if I had realized the signs that were there a year ago. Just being aware back then would have meant me being more proactive in destressing.
I'm loosing my will today I think... I don't know what I want people to do. I feel very worthless and lazy and fat. Letting my head get the better of me on days like today.... The sun is out however... Hopefully good dose of Vit D with all my free time will help.Does any one suggest getting a dog a good idea??x
Re the dog a good idea or not. Yes as a best friend point of view as you get the un conditionl love but you need to weigh up can you afford it. Decent food , pet insurance , wormers, flea protection and a dog walker if your having rough days who can give the dog what it needs plus those unexpected vet visits. Fibro is different for everyone and the good news is there is a endless list of ideas you can try that may help/may not and it's up to us to find out what works for us. First port of call is DR and maybe tinker with meds. Other ideas maybe try CBD oil, Pain clinic, Guides on the net re sleep.
Look through this site to find ideas on what you can try. I think people who dont have fibro dont really understand it a bit like alot of us who have it as its complex horrible horrible condition so try let the hurt ful comments go over your head as im sure they are not meant to be. Trouble with having a invisible illness we can look ok but struggling on the inside.
GL searching for things to help as plenty out there
I have a dog and cats.. it's a struggle on bad days to care for them. But I would suggest you consider a cat. If you go through the right rescue center, they would match you up with a car to suit you, and if it gets too much for you, they will always take the cat back. I have two wonderfully affectionate cats, and they are great company. Cats are not so needing as a dog, especially for exercise. A young kitten will amuse you with it's play, but an older cat is often a better choice.. they are less work, can be a great small companion, and love to just cuddle and purr with you, and if you have a garden you will find they will follow you out there.
Having a pet is a lot of work. I know it is my husband who does all the work and if I live alone I wouldn't be able to care for pets properly. Think more on it.
I have had fibro for over 40 yrs. It was classed as a mental illness then...all in your head girlie they would say.Later it was all send her to the NHS gym and lose weight. I went to the gym as instructed cos I felt guilty and lazy. Was so ill afterwards needed injections for pain. In the end I got mad and insisted on proper care. Saw rheumatologist who taught me about pacing. Went on a pain management course and developed zero tolerance for people putting me down. They back off when you stop apologising. I take naps during the day and not ashamed. Helps a lot. Good enough for Churchill also works for me. Acceptance is the key. Work with it...it helps.
Hello Tasmania-ems. So sorry to hear you are having such a tough time. I find eating a very natural diet (no E numbers or additives), no alcohol or coffee seems to help. I can’t tolerate the medications. Also find the stretching exercises and pacing (that’s a hard one to do) really work. But you have to do it all daily - take a few days off and I’m back to square one.
I did have a wonderful little dog called Zoe. I really adored her. I had her for 14 years - so was really fortunate. Still miss her.
But only have a dog if you have some surplus cash. After my husband died (and my income dropped) I did find it a worry to meet the insurance (rockets as the dog gets older) grooming and food. Didn’t begrudge one penny- but haven’t got another dog for financial reasons.
Hoping you will soon be feeling a bit more positive. Read all the posts on here - you are not in your own with the Fibro problems.
We’ve always had dogs and I’d love to have another, but I’m getting older so would it be fair not being able to go for walks if not feeling too good, unless you have someone else to take them out, , how about a cat , no walkies 👍
Hi. I have two guinea pigs and a rabbit who I adore however, they take a lot of cleaning out and you should never have a lone rabbit or guinea pig so you should always have two (not one of each). It takes me and my partner at least an hour each night to play with them and clean them and it's every day regardless of how you feel. Have you thought of a budgie or two?? Great company, good fun, lots of background noise and only need cleaning weekly. You can train them to say a few words too which is always entertaining. They are probably the easiest pets I've had. 😊
Tbh my family are amazingly understanding but friends and acquaintances were very lacking....I then started to say I was having a symptom flare and couldn't come out to play as I wouldn't be able to get to work the next day....it took my closest friend a while to realise I wasn't just a bit tired and a bit achey! She even questioned my arthritis diagnosis....it took my turning up at an event with a walking stick for support and an early taxi home to bed for her to realise....now she is very supportive...i think she read up on it.....I think just explain to those who matter to you what you are dealing with....send them links to info and hopefully they will start to understand you and support you.
Hi yes been there as now i dont have any friends for that reason, as though the one i thought was my friend stabbed me in the back , and was not very nice at all. I got fed up with having to explain myself and she keept throwing it in my face and saying you always complain your ill, she just did not get it. Some days better than others but on the whole i never really had many good days. only bad. The effort to even get ready was not like i used to, Its like an alien has taken over my body and i am in there saying hello please let me take some control. This past year spent mostly in bed been unable to do not really any thing. I do get up now but only do the slightest chore and i am absolutely shattered and have to go back to bed. I potted 2 plant boxs yesterday and you would of thought been walking up a mountain and spent next 3 hours asleep than had to go to bed. The reception i used to get was so your not coming than so i said i would have liked to but not possiable as my body tells me other wise. so now they dont ask not even family as my sister gets im not able to. But really sucks at times as you get fed up looking at same four walls. Now nicer weather i do get in garden but still have to reteat to my bed. I have to do whats right for me.
I had a friend who kept saying ..you look well....so I sent her a photo of me looking ill and said this is me when I stop making a gargantuan effort to slap on a smile and cover up my pain so I can appear ok but I am not. She took Tunbridge. Her loss.
Hi Lilly yes there just not worth the hazzle i dont think can not be doing with it. Yer she tried to tell my other neighbour how my pain was and i said i am not having that,you have no idea what my pain is , you dont have it so how do you know. That was it after several other issues going through my clothes at one time that was the last straw. I give and help any one if i can but thats taking the biscuit. Hope your feeling ok ish and the weather your if me not liking . x
I am currently recovering from a quadruple heart bypass op and everyone is telling me how amazed at how well I'm coping with the post op pain.
I tell them that the pain is nothing compared to a full on fibro flare-up so please could they save their empathy for the next time I get one rather than comparing it to their sore knee (or whatever)
It is somewhat ironic that it takes a huge acute life threatening event to make people realise that we are suffering from a chronic illness that sometimes makes us wish we were dead.
Hi its really hard to come to terms with the way your body reacts to fibro . Just remember we are all here some a lot more years under our belts living with fibromyalgia. Try and take time for your friends to come to terms with your condition but its your terms you tell one or all your fibro is yours so trust plus get support from close friends. I lost a lot of people i fought were good friends but gained a lot of friends through pain support groups who had or were going through chronic pain as I am . Its their loss if your friends walk away from you when you need support
at this point in time .
Take care of YOU and give yourself time to deal with this fibromyalgia its a pian but
Hi Tazmania-ems. I totally sympathise with you as I get the same responses from most people however, I realised a while back that I also find it hard to empathise if I've never felt the same kind of pain that someone else has. It's not because I don't want to empathise, I really do, but it's because I don't actually know what they're feeling so I just do my best and become very practical about helping rather than being as sympathetic as I'd like to be. What I'm trying to say I guess is that maybe your friends are doing their best but don't really know how to help so it might be worth talking to them and telling them what you need. Tell them that a film night with some good food would be better than kick boxing!! Friends are important and if they're good ones, they'll be there for you. 😊
Nope, I'm that tired today I can hardly speak. I got washed and dress and I'm done. Just a lazy git. Pain I have a PhD in and if never ends. Who cares no one but I'm too tired to be bothered that they don't. Take care.
Hi Taz Sorry for the pain you are in. Its true indeed nobody does understand because unfortunately, unless you have our condition you can't understand the pain or the way you get exhausted for days after doing something. You can't understand what you don't experience. Its maddening when someone tells you oh they have pain here there and everywhere, but its human nature. If they just gave birth and the pain stayed for months later then they might know. Its impossible to know. I found honesty the best, telling them they don't know how its like and gave them stuff to read. One friend got this condition as well so knew, she had it at uni and had to stop for a long time so she already knew. Like her it hit after a serious illness or accident and life event. I then had a second accident which compounded the first and this after. She could understand. I found no doctor thought it was real save one who was wonderful. I find small bits of exercise help but I have to do it. I don't often want to. I gave up with explain years ago. I just say let me see on the day. Its very hard. Hope you find your hope and happiness in your life and hope you are o. K going forward.
Hi, Tasmania it's really difficult isn't it but maybe your friends do have pain, it's not a competition on whose pain is worse. You're unsure of what you want from your friends, maybe they're feeling the same. Chronic illness isn't a licence to only talk of your pain, of how you're feeling surely. To be a good friend is also to be interested in how they're feeling, how they're doing too. Don't let pain take anything else from you! especially your friends who sound well meaning but perhaps a little uninformed. I've cared for lots of people, some get very selfish with the 'why me?' whilst others in far more difficult circumstances are an absolute joy to care for. Maybe you could go watch your friend kick box or meet for a coffee afterwards, sometimes a big effort is so worth it. Take Care x
No you are not being silly you are being honest and they are dismissing you like it's nothing and that hurts. I get this from my family all the time. It's awful and makes me feel unloved misunderstood and my needs unrecognised. Sadly very typical response to folks with fibro. I have light sensitivity and migraine...they say everyone gets headaches and wears sunglasses....I have a blue badge confirming my difficulties walking and a Stair lift cos I can't do stairs....they say ..if you start walking 30 mins a day then an hour you will build it up. They have not got a clue. Definitely them not you. Makes me cross cos as soon as they have a twinge it's oh the pain. How to cope....well realise you cannot change them...they are ill informed and not interested in being informed. Reframe your expectations and don't let them make you feel bad. Tis infuriating and disheartening though. Remember you do not need to explain yourself to anyone. You have genuine pain they don't understand. 're kick boxing a "don't be ridiculous" might be appropriate. Maybe get better friends.
I feel exactly the same, because people can’t see anything, not like a broken leg etc , then it can’t be that bad, I rarely say how I really am now as it got me so fed thinking you don’t understand, find its better to keep quite now as that doesn’t make me feel as bad, ☹️
It's the same for many of us. We try to say ''I'm finding my pain unbearable today'' , but use a different phrasing, and friends say things like ''Oh, I know ! I'm SO sore today too after that 5km run last night !'' and it makes us want to shout ''I bloody well wish I COULD run 1m, never mind 5km ! I can't even make it to the bloody bathroom without serious pharmacological help !!''
But we don't...........we just end up either avoiding the subject or the friends
Unless they actually have fibro they haven't a clue. But I've got 2 members of my husbands family that have fibro also but we all suffer completely differently. One runs her own business. The other works for her part time and is a single mum to 2 primary school children. I'm not sure if they are as bad or not as me, we don't talk about it much as I rarely see them, I do think they get that were all different though.
I've struggled to be able to work and suffer terrible fatigue and pain. I have 3 children, aged 13, 19 and 21. The older ones are really supportive but the younger one just can't quite get her head around why I'm not like other mums. My husband has seen me go from a 28 year old party loving, dancing queen who loved being on the dance floor with the girls and drinking cocktails. I still love the idea of all that and can still have a little boogie with my crutches. I just don't get yo do it so often. I'm now 43 and have mobility issues almost all the time. This last week I've been so tired and fed up that its frustrating for us all. My husband cares for and supports me so much I couldn't ask for anyone better but I just find it difficult to explain in a way for them to understand. I'm not sure they ever will but as long as the love and support is there they get that were not always at our best. Just try to explain it on there terms. Thing is theres nothing the same with fibro. We all know that every day is different so if we don't get it I'm not sure anyone else will unfortunately.
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My husband actually understands my gobbledygook!
Any one suffer from poor vision when they are tired
My arms and hands ache
Tired of being tired. 
