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.
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
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 😊
Don't think I am isolated. I might not have caring neighbours but I work, walk the dog or rather throw the ball in the park as can't walk too far and compete in canine activities. Colleagues at work don't take it personally when I refuse evenings out they just accept if they want me to function the following day I have to go home and rest. Sometimes I have to push myself to get out like we all do but usually the effort is worth it even if there is occasionally a sprite payback. I am still learning the art of pacing myself but I am determined not to become isolated. Things done on the spur of the moment are often the best outings. I know some of us are more affected than others but I want to continue using what I have before it goes completely. I am lucky that most of my friends are in different parts of the country so it is a case of just phoning each other or emailing so we keep in touch and only meet up very occasionally. I can understand how easy it is to lose touch with people. I know if I did not work I would find it hard.
Hi lisa I think fibro has had a big affect on isolating us more. my friends dont understand what Im going through and they dont want to understand what Im going through. So Ive been lonely and isolate as they just cant be doing with how I am. so a part from husband and you lovely ladies thats all I have. we all have each other so thats a blessing something Im grateful for. gentle hugs hun take care here for you
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
Hi lisa you are 50 miles away from hun I live in telford shropshire. I thought you lived in usa? take care gentle hugs
I think you ARE in the USA, why don't you join a USA FB group, it's a much more personal way of chatting to others. I only use this to help UK citizens onto FB, as we all prefer FB
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
Hi Pam, sorry but I definitely live in the UK. I'll look up the UK fab site though for sure 😊
Hi Maggers, I'm really pleased you managed to stay so socially included. I found it hit me hard when I gave up work. Try as I might I just couldn't keep up. I know I'm not as isolated as some on here but it's definitely a different kind of life than the one I used to have. I don't think it helped that for a long time I didn't have a name to tell people why I couldn't do the things I had done before.
Long may your health continue to keep you active. Gentle hugs
Hi pam I am a uk citizen and I live in the UK and always have 
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..
Then join FB it's free, start your own page, then ask for group British Sjogren's, it is a closed group, which means that your friends and family will see what you put on your own face page, BUT they will NOT be able to see anything you post in British Sjogrens, you will be able to see and say what you like without anyone NOT in the group seeing you. I am Pam Newman the admin. For British Sjogren's. Once you have joined FB ask to join and I will see your link
Friends? Were they really friends? No, they don't understant and are not willing to. And family BTW not much more either.
So, yes, it makes everything worse. Support can heal almost anything.
Tragic isn't it?
Why has the support group "borders", if you don't mind me asking?
Maybe things are not that different as you think...
Hi Teressa My friends and son dont understand what Im going through or care. having support is what we need with our condition but getting that support and understanding is another matter? 
True friends would give you that support
I apologise for intruding: I don't see it that way. I've lived in several countries and for me borders are about politics not about support, knowledge and most certainly about disease. However I do understant how some people have a different mindset.
I gree with you teresa fibro is fibro it doesnt matter where you live in the world.