Hi all….
Does anyone ever feel lonely sometimes, the feeling that people don’t really know what your going through. Don’t get me wrong I have a really supportive partner but sometimes I just feel lonely and isolated x
Feeling lonely : Hi all…. Does anyone... - Fibromyalgia Acti...
Feeling lonely
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Dazakella2010
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Yes I do as people don’t understand my illnesses and aren’t sympathetic, I get rid of those folk in my life as they bring nothing to me and make me feel worse x
yes. Many havent a clue about fibro even if you take the time to explain. I choose my friends and what I say to them. There are several sayings about getting rid of toxic influences - and that means people too. I feel for you.
Yes, me too I think it’s partly because we tend not to look ill that people don’t understand what we go through, it’s so hard living with fibro it makes us isolated from ‘normal’ life
yes! I live alone with my furbabies, I don't go out much, made worse by lock-down, very few friends now but still no point saying ''not today, I just cannot ... because... '', friends do not (or will not) try to understand or they are very self-centred and have no interest in considering my pain / problems
thank goodness for social media, home-based work and study to keep me occupied
Ann xx
Hi Ann, how are you? I can understand how you feel. In my case, I care for my mother, who is elderly and very fragile; It has been 2 years I don't see any friends and socialize (due to the pandemic). I have to say the internet has been helping but It is sometimes hard to keep positive. Nevertheless we must. Friends don't always understand - I hope you feel you are not alone with your pains and insist with your doctors for the best help you can get. lots of love from me in Brazil❤️
I'm doing as well as can be expected, thanks, it would be easier to say which bits of me do not hurt today
I'm actually going to meet some friends for tapas, coffee and, hopefully, a giggle tomorrow so having a quiet day today in the vain hope I'll be OK tomorrow. She has recovered from breast cancer so I have had two years listening to her troubles but not mentioning mine, she is also a dypsomaniac which can be an issue. He is short-tempered so often they argue in front of me which can get embarrassing!! But at least I will be out of the house for a couple of hours, I do get tired easily so cannot last any longer than that
Stay safe
Ann xx
It's because breast cancer can kill but fibromyalgia won't kill you. She needs warmth and understanding while going through that. Once it is history, it will be in the background. She won't be experiencing the pain that you are experiencing, and perhaps she can realise that while she has been cured (hopefully), there is no cure for fibromyalgia and similar invisible illnesses.
Hi I have an amazing wife and like your partner they try to understand.my wife must get bord of me keep complaint about the pain .I feel she not got much of a life I come home from work and I'm so exhausted.as soon as I stop I fall asleep.so I try to keep the pain to myself so I think we all feel alone with our pain .what annoys me is people you work with say your better now but we are never getting better. That's the good thing on this site people understand.your not alone we are in the same boat. good luck .👍
Hi, yes you have summed it up pretty muchI think its only people with fibromyalgia who truly understand ... I try not to apportion any blame on people as it is hard to understand as it is an "invisible" thing
Only your true friends will even make any attempt to ask you how you are doing, I feel that even my husband and close family "forget" I have fibro, probably because I try to just do everything as if I don't have it. It's complicated.
Sending you solidarity, you are not alone xx
Lonely. Its just awful. I'm only 59. My husband divorced me last Feb. I've joined a dating website recently and having seen a rheumatologist last Wednesday to be told I have osteoporosis and fibromyalgia. What man would want to date me. I AM FINISHED. I MIGHT AS WELL JOIN A CONVENT. The words depressed. No man will want me. I'm useless now.
Hi golly123Dont give up hope.
I had fibro for years and used online dating. The block button was my friend and I was practical in my choices.
I wanted a partner but was whole in myself.
I have other health issues as well as fibro.
Met the love of my life and married 17 months later.
He told me after a month or so He was worried no one would want him because he has some health issues too!
We have our daily challenges,falls and trips and face the world together.
I am sure it is also true that I might have met someone without health issues that might have fallen for me but this is my story.
When someone does not respond or a date is not right for you take a positive of having met someone interesting and move on.
You have a lot to offer as a human being, if they dont get it,they are not for you.
Take care of you
G
You have too much to cope with at the moment to look for someone to date. You are not finished. You now need to be on a quest to find the best ways of caring for yourself, and that might include joining a walking group. The movement and exercise might help and you will make friends, which is more important to your wellbeing than dating. You are, as you say, only 59. You've got plenty of years ahead of you but don't get caught up in a toxic relationship!
To everyone. For all the good advice. It means a LOT LOT A HUGE LOT. Great advice and you have all brightened up my day. X
Sending hugs and💝. You will find a partner who will love and accept you ❤️
I can fully understand your feeling this way as I have felt the same but my friend has said someone who truly likes you will like you for what you are keep strong golly123 xx
Yes. Even when surrounded with people I feel so lonely. I have only told a few people that I have fibromyalgia and although they say they understand they really don't. Last few weeks I've just wanted to cut myself off from everyone as I'm sick of putting on a brave face. Hoping once the better weather comes I will feel less down about everything. X
I feel the same love most of the time . What ever support we get still don't understand how we have to carry on working and doing the simpilist things which can be so hard to do x
Absolutely. Particularly between the hours of 2.30am and 5.00am when the world is very quiet and dark. It's hard because whilst partners are supportive, they don't live your life (nor you theirs) and so your limitations and pain are experienced differently by them (outsider looking in). I've found that being open and honest with people is important but also reflecting myself on what I need ie if I feel lonely what does that mean. Does it mean misunderstood, unheard and if so, by whom. Then what would change that/make me feel abit different about the situation. Please don't think I'm preaching (I'm not), I frequently get it wrong but I know how destructive these feelings can be so just offering my perspective .
Yes good to reflect on our feelings and assess their origin. Good advice xx
I agree with others comments, people who do not have it just do not understand it and so you are left feeling misunderstood and lonely. My husband is brilliant and seems to really get it but beyond that no one seems to get it.
Just had a quick scan at the other replies, please nobody take offence at what I am going to say. I don't expect others to understand my pain or my neurological issues. Yes, my life is very lonely, it's difficult to not feel lonely and basically just lost. I am not able to have a fulfilling life when life is passing by your window and most times I am not even capable of watching it. Such frustration wears me out. So we are left even more drained. So here we sit, tired, in constant pain, lost and lonely.
Yes I absolutely feel the same way. In fact reading all the replies has helped me... knowing other people are going through the same things. I have a supportive partner too but it's just me who feels bad not being able to do the spontaneous things we used to even though he totally understands. I just never know from day to day how I'm going to be. So rather than plan anything with the very few friends I now have...I tend to do things on my own, when I'm able to. It can be very lonely...like I'm living my life in someone else's body. So nice to be able to talk freely here with people who " get it" .
Hi I know how you feel. People might think I am lucky as I have a very supportive family. My oldest daughter had our first brand baby in December so I should not be feeling lonely.ALthough I have my new granddaughter i do still feel very lonely at times. I really feel that you can have people around you but still feel lonely. My problem person is my husband he is great but I feel like I have to keep justifying myself when I'm having a bad day. He can't seem to understand that the smallest tickle or just sometimes just sitting to close can cause pain. I love him dearly but do get feelings of loneliness when I have to keep explaining myself.Hope you start to feel better.
• in reply toPaige1999
Hi Paige1999
Congratulations on your first Grandchild ❤ hope that your are very happy xx
I guess I'm lucky, we don't have any children so it is just my husband and I to worry about.
I feel lonely sometimes too, been awake since 3.50am this morning and my husband is still sleeping. Yes I agree with you, you can still be lonely with people around you.
My husband is supportive and does everything for me. I count myself very lucky.
I had a rough night last night, I was doing so well, no pain for 3 consecutive days.... last night my husband nuzzled into my right shoulder affectionately and set off a major pain attack. He thought I was 'cured' and couldn't understand how the lightest touch can trigger an attack.
Before Fibro we were such an affectionate couple. Some days he can't even touch me!!He can't understand it. The only way I can describe myself with Fibro is that I am fragile like an egg.
The slightest touch will crack my shell.
He accepts that we can't hug each other, sometimes. I know it's wrong but I resented him for last night, I was doing so well, but ANYTHING could have triggered it. He is awake now, I'll be nice!!
This blog helps a lot too, and knowing that you aren't the only one. I know I don't blog very often but my symptoms have been really good recently.
Ooh and my husband and I are sitting in our lounge now, I'm blogging and he is on YouTube and the conversation is light.. so far!! Xx
Hope you are ok and that you have a good day.
Take care Xx
Definitely understand where you’re coming from. Am constantly in pain but people at work say “I’m in so much pain from my arthritis “ if I even mention how I feel. They say I can’t understand the pain. Well I’d take arthritis pain over fibromyalgia any day because arthritis can easily be controlled by painkillers (mum and other people had it and said how easily painkillers helped) but this can’t. Now I’m finding gabapentin is impacting heavily on my asthma so now have problems with that but family don’t understand. I feel alone, like you, but also feel people think you’re lying because they get relief from their pain. Wish I could just click my fingers to be pain-free. People just think fibromyalgia is a little bit of pain. I really feel for you x
Hi , i have both fibromyalgia and arthritis , I wouldn’t say that arthritis can easily be controlled with painkillers , but it’s a different kind of pain from fibro and all the other stuff that comes with it, fibro fog, IBS etc etc .
I have 2 different types of arthritis also and that is also so painful, sometimes even painkillers don’t help. X
Hi yes I've been like this for many years now. I've lost friends over this. It just me now. I'm lucky that my mum has come to terms with it but sometimes it's been hard for her to understand.
I take every day as it comes. My sleep patterns are bad.
We are lucky that we got this site that we can talk on!!
Ok every one take care
Daz
Yes I do I know exactly what your saying
Hi, I thoroughly understand how you feel! I think it is very common amongst people with fibro. If you have a pot on your arm people can see something is wrong! Stay strong! Don't put the fork from the dog food in the bin and the kitchen roll in the dishwasher like I did earlier!!! Fibro fog! Think I'm losing the plot! Take care x
This is totally me it made me chuckle. It makes you realise your not alone reading the posts. I have fibro and other health conditions to. Please take care too x
Yes, people ask you how you are but don't give you a chance to reply. Then you sit on an uncomfortable chair while they take an hour to brag about how good they are at their job. Absolutely - no-one else gets to speak. Then they ask you again how you are and they scream insults at you before you've had a chance to explain why your life is how it is. They don't understand why I have put them out of my life and say that I won't be able to attend any other gatherings where they are. What?
YassytinaFMA UK Volunteer
Yes I totally think people do not always mean too but don’t always show very much empathy for this condition and sometimes you can get very lonely , I know sometimes when I see people living their lives too the full and I feel my cups always half full😏I do surround myself with a handful of friends who totally get it and are very supportive, having a good partner is great as you can always have a good chat now and again and show them your way of giving back be it a little note, buying their favourite cake, extra cups of tea , showing interest in their day , just the little things that help in a relationship when one is struggling. I know in most towns there are little clubs even fibro related ones where you can turn up on the day (if you feel like it) cups tea/cake and having a chat with people can differently lift you. Once a week I aim to see a friend to do just this . But yes a lot of here really can relate to you xx
Hi there Everyone.
Yes I totally have to agree also with this. I have also now found after 2 failed relationships since having the different conditions I have such a lonely and empty life.
People do see you and think she looks ok. Not the daily battles to get people to understand or applying through the awkward and terrifying benefits system to see GPS and hospital visits.
It all energy none of us really have is it.
I can’t blame everyone as I’m sure we would may have felt different if we ourselves had no been going through all of our conditions.
I think the problem is the world has become so busy. Before families stuck together friends kept and eye on each other and no one seemed to judge as much.
I have lost friends that seemed to love me when well and over 23 years of friendship gone.
I find my dog is my rock sounds daft probably but she seems to understand if I’m not quite right.
I’m finding it’s keeping a relationship in all honesty. I can’t always be the bubbly person I once used to be dancing on the table on a night out.
The one who used to organised the limos and get togethers.
Does anyone else find there relationships have ended or suffered mine have been long ones.
I sadly can’t have children either so I do understand that sitting and watching the world go by feeling but then I have to sit and think what I’m grateful for believe me it’s hard truly.
I think being able to read these messages and have the support from in here is great. I won’t lie I was crying my eyes out earlier then checked my emails and this was in it for the post.
Life is not perfect for any of us but then what these days seems to be a perfect life???
Just know if you need a chat I’m happy to listen. I don’t have groups around me so I can feel very isolated I’m in the middle of the countryside.
I have chronic fatigue plus other health conditions too. Has anyone found that they too have had people use them or a partner for money etc then they have left you in lots of debts ??
Gentle fibromyalgia hugs to you all and keep smiling we have each other even if it’s through our technology xx
Hello Twinkle I couldn’t read and run. How are you? That’s great you have your lovely dog for company, animals are wonderful. I have a beautiful cat and I would be lost without her. What breed is your dog? Xx
I have a shih tzu and she really is brilliant. What bread is your cat AllthatGlitters I housed to have cats before my dog. Thankyou for saying about my post. I think if I make just 1 person maybe smile or think they are not alone then it makes me smile. I hope your ok? Gentle Hugs 🤗 Xx
My baby is a Maine coon and she is is so cuddly and vocal I would be lost without her. Yes I am fine just going through lots of health problems at the moment 🤮hoping for some light at the end of the tunnel as they say x
Hi,
It's been ages since I've been on this group and something made me come and read again. I totally relate to everything that is being said. And Twinkle your comment caught my eye about being used financially and getting into debt - yes experienced that with my ex.
Hi mono3 Thankyou for messaging. Have you really had the same thing happen. It’s awful isn’t it. I feel a complete idiot and do not know who to trust I’m having to do a debt plan are there any others out there who have experienced something similar.
Please remember it is not you. It is more to do with the actual person who does it to vulnerable Kind caring and I’ll individuals that are the ones who are actually not very nice kind and have the problem.
Keep strong 💪 and always message never feel alone I was until I started reading the posts more on here.
So I truly Thankyou all Xx
Oh yes, all the time. I don't like talking about my health anymore because of past comments, like, your lucky it's not terminal😲 be grateful you don't live on your own😬 and lot's of other useless comments that don't help. So I greet every friend with a smile and say I'm fine!!! But then it makes the loneliness worse as there is no one to talk to!!! Still I'm lucky it's not terminal😂😂😂 I have 2 friend's who understand and as their circumstances are difficult we offer mutual support😊😊
Yes I understand the loneliness all too well!I share my wkends so not completely alone but even so when in pain/discomfort/exhausted it is hideous not 2b understood!!!
Today I undertook ONE errand and have returned to lie down in a crumpled heap!!! It's difficult to explain the fatigue; even to myself! Yes friends are few+they have v sick partners so it's only texts+e-mails and I am greedy to hear from them but of course they have busier lives than me...
Disappointment is frequent!
Family def don't understand but Long Covid has made their contact happen a little more often... Why accept one but not the other condition???
Feeling lonely+alone is common.
I do hope you can feel the love+support here? We all need some connection in our empty lives don't we???
Gentle hugs Dazakella xx
Yes, definitely do at times. I do believe I bring a lot of it on myself though as when I'm really struggling I tend to take myself away from everyone.
That could be just me though, can't stand sympathy, that concerned face & head tilt really makes me want to scream 😩😩😩 Empathy though is entirely different. 😊
Reading through some of the comments about people not understanding other people's pain I can totally get that.
It's so difficult to understand when it's actually happening to you, so difficult to put it into words without sounding like the cheese 🧀 has taken a massive slide off the cracker 🍘.
How can we expect others to understand how it feels?
Pain is pain IMO no matter the cause.
It's not a competition.
Comments on other conditions being less painful or preferable is negative uninformed and smacks of hypocrisy whilst discussing others treating people with fibromyalgia in the same way.
Take Care Everyone ☺️
100 %people have no idea but are quick to judge
Yes, it's hard to have conversations with people who are out and about, possibly working, going on holiday. Leading their lives, looking forward. 'What have you been doing' is a question I dread; especially when they are telling you about the promotion/ birth of a baby/exam success/film- art exhibition - shopping trip - new shoes - night out with friends. Well I got outside for an eight minute walk/(after washing and dressing and feeding myself. I might even have) cleaned the toilet! ...followed by silence.
Oh how I get this. Every week my lovely friend calls and asks me what I have been doing. Does she really want to hear that I’ve managed to wash my hair or done a jigsaw puzzle?
Luckily she does understand more than most what it is like for us, but it still leads to a few awkward silences, when I just can’t think of absolutely anything I have done all week. The other problem is that with fibro fog, I can’t always remember the things that I was intending to tell her 😂
Aw new shoes!👠New pretty shoes with Heels to match your outfit!👠👠Not new comfy ergonomic ugly as sin shoes with removable podiatry approved insoles!! Aw I vaguely remember them, do you? 😩🤣🤣
Hi,I know exactly how you feel, I find that is really hard to stay positive some days.
Life is lonely, but like you, I have a very supportive partner but I also feel empty inside, I stay home most of the time and don't really have anything to talk about. Sure I have things I like doing, some that I can do and a lot that I can no longer do. I do find reading a good way of taking me off the rollercoaster of pain and self loathing for a while.
My fibromyalgia has been really effecting the back of my knees lately as well as other areas and I also have something called Plantar Fasciitis which is bloody painful!! Nobody seems to really understand what we are going through, or adjustments we have had to make.
People on this site have been wonderful to me and given me help and support. If I feel the need to talk I come here!! Sometimes I don't want to talk though. But really I understand how you feel, it's an uphill struggle of pain and loneliness.
I really hope you can feel less lonely. This is a good way of feeling less lonely, just pour it out on here with people that know what you're going through. Take care x
Hi everyone…. Thank you for all your replies. Sorry I haven’t been feeling too well the last couple of days. I just get so down sometimes. I have been medically dismissed from my nursing job and that makes me to upset sometimes. I’m on 42 so it makes me feel very low. I have quite a few medical problems along with fibromyalgia, blood cancer, m.e,?Rheumatoid arthritis (under investigation) osteoarthritis intercranial hypertension and a benign liver tumour. With all the symptoms that come with these diagnosis I had no option but to be put on sertraline a few weeks ago to try and help my mood.
😘🤗🤗
Hi so sorry to hear this and sending a hug it’s so hard. I have been through something similar. It’s awful. Please feel free to DM if you like xx
Hi ya Dazakella2010
I can fully relate to you. I am just 43 myself and I had always worked within care. No need to apologise for the down days. We have all been there or going through it. This week has been horrendous for myself I’ve had 3 days in bed.
Please just message and it’s surprising how many of us are exactly going through the same.
Myself I lost a best friend or so I thought who basically could not cope with me being unwell but there are the likes of all of us who are happy to listen and in a similar situation.
I’ve found myself very low again lately too but hey give yourself time there are lots of changes that we have to deal with and accepting and dealing with these changes just takes time and baby steps.
Please take care gentle 🤗 xx
Yes, I often feel like no one really gets it. They all say that I look fine and that maybe I just need to get more fresh air and exercise. I often feel like I dare not say anything because people just seem to not get it. But I just keep on "keeping on" and accept that they will not understand unless they have Fibro (which I would not wish on anyone).
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