Socially isolated?

Posted , 9 users are following.

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.

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  • 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 problems 
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    • 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's 
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    • 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's 
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    • 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..
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    • 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
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    • Posted

      Hi Teresa I dont know how I did it but I replied to myself instead of youlol 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
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    • 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. smile
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    • 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
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    • 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 ?
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    • 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 smile onwards upwards 
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    • 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!
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    • 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...  but yesterday there were some 107ºF inland towns. 

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

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    • 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.
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    • 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 on smile
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    • 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
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    • Posted

      You know what? This is the kind of conversation an American person would find very hard to understand... in Europe  and the UK however "small" countries are they always hold considerable weather diversity… so the weather here (I’m in Lisbon area if you go North it’s much colder and snows in Winter time and further South of her is much warmer)  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 77-95ºF in the Summer. In between it’s mild. When it rains it’s usually heavy rain, really heavy. Very much like in the UK people are always complaining about the weather: too hot, too wet, too….windy, too long winter (not true) too short Springs…. And so on.   People are never happy are they? biggrin
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    • 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.
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    • 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
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    • 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, stops cramps and spasms by 80% yay,,,,be blessed Maggers.,have a lovely day..:-) xxx
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