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Socially isolated?

Posted , 9 users are following.

lisa52101
lisa52101

ive noticed when reading through conversations on here how socially isolated many of us are. I'm wondering whether it's been a choice to have a few good friends who don't always understand what we're going through, or that fibro has isolated us. We can't go out the way we used to and I know from experience that we can't plan anything because we don't know how we will feel. I know I'm far more isolated than I used to be.

4 likes, 132 replies

132 Replies

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  • shelagh6
    shelagh6 lisa52101

    Posted

    It is very interesting reading everyone's experiences of isolation or otherwise. I have had this condition for about 20 - 24yrs, I used to be able to fight it, go to work, out with friends and out with hubby but now I find every day so difficult, just putting the kettle on is so very hard. I should say I have Osteo Arthritis, Spondylitis, Double Crush Syndrome as well as fm, oops forgot IBS. I force myself to go to dog shows but now hubby has to show the dog for me and I'm still exhausted for days afterwards. I gave up work last year, it was a very stressful job in the NHS I just couldn't take it anymore. We moved to this village a year ago, we bought a house I fell in love with when I saw it but I know no-one here apart from a quick chat with neighbours very occasionally. I am very comfortable in my house with my own company but do miss a natter with friends and colleagues sometimes. I did have online friends on Facebook, I thought, but when I bought my puppy a lot of them turned against me, apparently I should have known not to buy a pup from "that" breeder, I have no idea what they're talking about but they obviously weren't the friends I thought they were. So now I go on FB but rarely comment on anything in case they turn again! I am particularly sensitive today after Saturday's show but sometimes I feel judged even on here when people say we need to get out, go to concerts etc, I would love to , I really don't need to be told how useless I am because I can't do anything and I need to make more effort.

    moan over, take care everyone, gentle hugs!

    ps I guess no-one on here knows what happened here two weeks ago, a coach with young teenagers onboard came round the bend, hit a car coming the other way then ploughed into the house four doors down from us, 17 injured, 9 taken to hospital one by helicopter. Now the house that was hit hardest, he hit three in total, is unstable so there are roadworks outside with traffic stopping too close to the lights and coaches/wagons etc coming through the lights too fast then having to swerve towards our house. Every time I see one coming I think this is the one! It won't happen of course but makes me cringe each time.

    hugs again, thanks for reading!

    • kaz_40
      kaz_40 shelagh6

      Posted

      Hi shelagh no 1 has the right to judge any 1 we are all individules with our own opinions. How we all cope with our condition is individule to us, we know our bodies our limitations better than any 1. If we decide for ourselves that we want to go out visit friends do what ever than that is our decision ours alone. if we decide we dont feel or want to do anything then again thats our decision. we all cope and handle things differently, what suits 1 person may not suit another. its ok to discuss ideas but you should never try to push your ideas on to any 1 else. as for people having ago at you on facebook well they were in the wrong for doing so. who are they to tell ou what you should or shouldnt of done its none of their buissness. people now a days are only too quick to judge others and that shouldnt be the case.take care gentle hugs 
    • shelagh6
      shelagh6 kaz_40

      Posted

      Thank you Kaz, feeling particularly vulnerable today, reading posts about how we should get out to stimulate endorphins feels really judgmental today, probably won't tomorrow, who knows. I feel like I should get off the sofa and clean the house but the pain is all over and very bad.

      gentle hugs winging there way to you xxx

    • TeresaJS
      TeresaJS shelagh6

      Posted

      Have you thought of trying LDN? Since you've got so much going on... it might help.
    • TeresaJS
      TeresaJS shelagh6

      Posted

      Judgement was the as far from my mind as you can imagine...
    • TeresaJS
      TeresaJS

      Posted

      was as far as... 
    • pam_87693
      pam_87693 TeresaJS

      Posted

      LDN is for MS and PBC if you are living in the UK you would be ill advised to take off label drugs. 
    • TeresaJS
      TeresaJS pam_87693

      Posted

      I've got fibromyalgia, I'm on LDN, I decided to take it on an experimetal basis (ongoing) and the GP prescribed it.  I'm not in the UK - I'm in Portugal - but I have lived in the UK for many years and I know the NHS and health system quite well, I reckon. I study everything that involves my health very thoroughly  and I don't take no for an answer. Even so I can't say I'm cured nor that the doctors do every and anything I wish but I sure put up a fight. 

      So, summing up: there are may shades (not only of gray) in this world of mine. What's PBC? I suspect one of these day we only speak "acronymish."

    • bronwyn97278
      bronwyn97278 shelagh6

      Posted

      It's ok Shelagh; I, too, find it hard to "go that extra inch....let alone mile"...to put on the makeup/dressup can be the extra taxing that our bodies can't take....yes, I know that the endorphins do assist our moods, but if there is the added issue of more pain/energy required, when we are trying to conserve what we have, it would defeat the purpose.....I did it for my grandson's confirmation....and had to take extra meds, just to get through the day.....keep doing what you know is right for your body, and as I have suggested to someone else, just Delete any messages that come your way (before even reading them), if you feel that they are not appropriate to what you are needing....I've come to realize when something is going to be relevant to my needs..............hang in there....you are important.............Bron
    • kaz_40
      kaz_40 shelagh6

      Posted

      Hi shelagh I second to what bronwyn has replied back to you. we have to do whats right for us and deal with things in our own way. I f we are able to do things and get out and about that is great and if we are unable to do that because of the pain or just not wanting not to move then thats ok too. just do what you feel is right for you. what I do is listen to what my body is telling me, as it soon lets me know if it doesnt want me to do anything? take care gentle hugssmile 
  • kaz_40
    kaz_40 lisa52101

    Posted

    Hi lisa thinking of you today hope all goes well at the hospital for you. take care gentle hugs x
    • lisa52101
      lisa52101 kaz_40

      Posted

      Hi Kaz, so sorry I haven't replied to you sooner. Between how I felt with the migraine yesterday and the chaos of today I'm not sure what sense I would have made even if I had replied. First of all Thank you so much for wishing me well and the good wishes that you sent. It was lovely to know you were thinking of me. 

      It all went well, although getting up at 6am was a shock to my system 😲 I got home a little after 5pm and they told me the longer I rest, the longer the local anaesthetic will last, hopefully till later tonight anyway. I'm going to be sore for the next 5-7days, with full affect in about a month. I'm going to be re-evaluated in 6wks. If it has worked then it's check ups every month until pain creeps back in and if it hasn't worked, then i will have to have invasive surgery again. 

      I can't begin to tell you how tired I am, or how sore my back is,but if it works, then it's been worthwhile. If you don't see me on here for a little while then it's just because I'm trying to pick myself back up. 

      Thanks again for your kind words. Speak soon and gentl hugs ☺️

    • kaz_40
      kaz_40 lisa52101

      Posted

      Hi lisa you get plenty of rest and look after yourself. Im so pleased it all went well for you, I hope that it has worked for you fingers crossed.lets hope it has so you dont have to have surjury. I bet you are so tired hun with such an early early night will hopefully you do some good.I hope the fibro doesnt make the soreness worse for you. How you are feeling now will be worth it if its worked for you, I really hope it has for you. thinking of you very gentle hugssmile
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