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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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  • pam_87693
    pam_87693 lisa52101

    Posted

    I would think it would be an excellent idea Lisa. I imagine your from the USA? Rather than use a UK Patient group, why don't you all joint your own FB group. I have a FB group in the UK but it is for UK people only. If any of you are in the UK you are most welcome to join my group British Sjogren's as Fibromyalgia is one of the Sjogren's problemsĀ 
    • lisa52101
      lisa52101 pam_87693

      Posted

      Hi Pam,

      Its strange, I think your the 3rd person who thought I'm from USA. I actually live in Manchester England. I'll look up your fab page too šŸ˜Š

    • pam_87693
      pam_87693 lisa52101

      Posted

      Brilliant Lisa we are there for all in the UK for support and chat. We are members of the BSSA the charity for Sjogren's, as SS starts with the sicca symptoms and fibromyalgia we accept those and we have knowledge, some say more than the doctors lol x Look for British Sjogren'sĀ 
    • kaz_40
      kaz_40 lisa52101

      Posted

      Hi lisa you are 50 miles away from hun I live in telford shropshire. I thought you lived in usa? take care gentle hugs
    • pam_87693
      pam_87693 kaz_40

      Posted

      Well if you live in the UK please join us in British Sjogren's! I didn't realise that there were so many in Patient who were from abroad, I questioned the moderator and he said yes they allow them from USA and Australia, however it is very confusing as other countries have totally different healthcare systems to ours, different drugs, different rules. I apologise please befriend me Pam Newman and I will get you into British Sjogren's on FB then you will be amongst others from the UK and if you join the BSSA they have local group meetings. You don't have to be a member to join British Sjogren'sĀ 
    • lisa52101
      lisa52101 pam_87693

      Posted

      I'll definitely look you up. I agree it is confusing, I thought this was a British site. I came across it because my GP started to allow patients to book appointment and repeat meds online, and this was part of the same site. I think it might be a good idea if we had maybe a flag system or something that can identify country of origin, if only so we can adjust the advice we give. As you say we all have different healthcare systems etc..
    • TeresaJS
      TeresaJS pam_87693

      Posted

      Why has the support group "borders", if you don't mind me asking?
    • TeresaJS
      TeresaJS pam_87693

      Posted

      Maybe things are not that different as you think...Ā 
    • kaz_40
      kaz_40 TeresaJS

      Posted

      I gree with you teresa fibro is fibro it doesnt matter where you live in the world.

      neutral

    • kaz_40
      kaz_40

      Posted

      I dont think their should be borders in a support group. after all we are all in the same position battling this horrid condition. we are all in this togeather no matter where we are living in the world Its called a support group for a reason?neutral
    • kaz_40
      kaz_40 TeresaJS

      Posted

      Hi Teresa I dont know how I did it but I replied to myself instead of youlolĀ Im a twit save me retyping can you find the reply to you in my message to me that was meant for you confused I am
    • TeresaJS
      TeresaJS kaz_40

      Posted

      I fact I believe we benefit not in spite but from the differences. Different approaches, views, practices are helpful in leaning how to deal with things.Ā smile
    • kaz_40
      kaz_40 TeresaJS

      Posted

      I totally agree with you we all have different approuches to things and how we deal with this condition and how its affected our lives and those around us
    • TeresaJS
      TeresaJS kaz_40

      Posted

      Lots of people do that in here and don't even notice. Don't worry...
    • sharon53053
      sharon53053 kaz_40

      Posted

      Hi Kaz, I can't believe it ! I live in Telford Shropshire too ! I'm in Wellington. I have osteoarthritis and fibromyalgia. I have recently had the added issue of nerve damage and a partially paralysed foot caused by a severe bout of sciatica. How close are we ?
    • Flowerlady
      Flowerlady kaz_40

      Posted

      Hi Kaz

      You are very close to me, I live in Market Drayton!

    • kaz_40
      kaz_40 Flowerlady

      Posted

      small world isnt it Ann who would of thought we lived that close togeathersmileĀ 
    • kaz_40
      kaz_40 sharon53053

      Posted

      omg sharon I cant believe you live in wellingtonlolĀ I live in ketley near redlake
    • Flowerlady
      Flowerlady kaz_40

      Posted

      I have obviously heard of it, but unsure of the whereabouts. My husband would know. I know where the hospital is, as I attend there.smile
    • kaz_40
      kaz_40 Flowerlady

      Posted

      Im near the shropshire star at ketley I dont know market drayton well we have drove through it on several occassionsĀ smile
    • christine26761
      christine26761 kaz_40

      Posted

      Putting it out there Kaz...does anyone live near Launceston Tasmania Australia,...could be very interesting.,would love it..please post...:-) xx hoping...
    • TeresaJS
      TeresaJS kaz_40

      Posted

      I heard that today you're going to get some HOT hot weather ! So enjoy!
    • kaz_40
      kaz_40 TeresaJS

      Posted

      hi Teresa it is very hot today the forecasters say its going to be even hotter tomorrow with thunderstorms? is it hot where you are how are today? I didnt sleep again last night and was in agony last night with muscell spasams in my back didnt feel well at all last night never mind plod on smileĀ onwards upwardsĀ 
    • kaz_40
      kaz_40 sharon53053

      Posted

      Hi sharon how are you today? are you enjoying the hot weather? it doesnt agree with me so Im staying out of it take care gentle hugs
    • shelagh6
      shelagh6 TeresaJS

      Posted

      It is certainly hot up here in the north, no wind or sun just heat! Unfortunately I and a few others are so much worse in the heat, I would love to enjoy it but can't! It is very frustrating! Hope you have a great day!
    • kaz_40
      kaz_40 TeresaJS

      Posted

      The hot weather doesnt agree with me, so I cant get my vitamin d me my dog are trying to keep cool hope your having a lovely day take care
    • TeresaJS
      TeresaJS kaz_40

      Posted

      Gotta have some magnesium... usually spasms indicate lack of it. Are you taking it?

      It's hot, hot, hot in here. As I'm by the sea it's a bit cooler than in other parts fortunately... Ā but yesterday there were some 107ĀŗF inland towns.Ā 

      I'm glad it's cooler than that in here... anything beyond 95 makes me sick, low blood pressure, etc.Ā 

    • shelagh6
      shelagh6 TeresaJS

      Posted

      My cramps stopped with tonic water, not everyone likes it but I have the one with added lemon from any of the Supermarkets, it's just like fizzy lemonade.
    • kaz_40
      kaz_40 TeresaJS

      Posted

      Hi teresa I suffer from high blood pressure Im not takeing magnesium, Ive got to nip to a chemist so will have a look for it. I wondered how the weather where you live compares to us in the uk? Im very cool got fan onĀ smile
    • kaz_40
      kaz_40 shelagh6

      Posted

      sounds interesting shelagh Ive never heard of that before? I suffer with cramps sometimes but its mainly muscel spasms I get I was in agony last night I had muscel spasams in my back? I dint know whether to scream or cry take care hope managing to keep coolcool
    • TeresaJS
      TeresaJS kaz_40

      Posted

      You know what? This is the kind of conversation an American person would find very hard to understand... in Europe Ā and the UK however "small" countries are they always hold considerable weather diversityā€¦ so the weather here (Iā€™m in Lisbon area if you go North itā€™s much colder and snows in Winter time and further South of her is much warmer) Ā comparing to the UK (the UK holds considerable diversity) in much milder all year round: never snows, at times it rains considerably, and it hardly ever goes below 48-50F in Winter time and somewhere between 77-95ĀŗF in the Summer. In between itā€™s mild. When it rains itā€™s usually heavy rain, really heavy. Very much like in the UK people are always complaining about the weather: too hot, too wet, tooā€¦.windy, too long winter (not true) too short Springsā€¦. And so on. Ā  People are never happy are they?Ā biggrin
    • kaz_40
      kaz_40 TeresaJS

      Posted

      No 1s ever happy where the weather is concerned still gives us something else to talk about other than the horrid Ā fibro?smile
    • Maggers
      Maggers TeresaJS

      Posted

      Tonic water has quinine in it and is an old remedy for muscle cramps. either taken or sprayed on affected area. Never tried it myself but my gran used it all the time.
    • lisa52101
      lisa52101 kaz_40

      Posted

      I am, Iuuurve this weather. I ache less and I just love it, love it, love it!!!! šŸ˜ƒšŸ˜ƒšŸ˜ƒ
    • kaz_40
      kaz_40 lisa52101

      Posted

      Hi lisa glad you are enjpying this beautiful weather and not aching as much thats a real added bonus hun take care gentle hugssmile
    • kaz_40
      kaz_40 Maggers

      Posted

      Thats interesting to know anything is worth a tryĀ smile
    • kaz_40
      kaz_40 Maggers

      Posted

      My husband has just told me his gran use to use tonic water for cramps/ Im going to give it a try but with out the ginlol
    • sharon53053
      sharon53053 kaz_40

      Posted

      Hi Kaz, I know Red Lake and the Shropshire Star ! We are only about 10 or 15 minutes drive from each other, I don't know Market Drayton so well. I work at the GP surgery which is based at the Princess Royal Hospital. I would love to meet up with you for a cuppa and a chat, sending gentle hugs to you and Anne
    • christine26761
      christine26761 Maggers

      Posted

      I tried I once..I had really red eyes the next morning.,,the doc said it was the tonic water..grr..I just use double dose magnesium..works pretty well,Ā stops cramps and spasms by 80% yay,,,,be blessed Maggers.,have a lovely day..:-) xxx
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