So this forum isn't for everyone with RA?

So im told that im unbelievable to be posting anything on here because im in US and this only for people in the Uk this person has been really rude to me and making me feel as i cant talk to you on here about how im feeling and dealing with my RA because im based in the US. I thought this was for people with RA to talk with others who understand what were going through during this hard time. Not for people to judge you belittle you and treat you bad cause of where you live. Im sorry just feel very upset. If im in the wrong please let me know.

41 Replies

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  • Report it to the administrators, no-one should be rude like that on here. We're from all over, and with a range of inflammatory diseases. Mainly RA, but others too.

    Over to the right of your screen is a box called "pinned posts" and there's a message about how to report private messages.

    Yes it was started by an organisation based in the UK, but that is 't the most important thing. As you say it's about sharing our experiences.

  • everyone is able to write on here. They come from all over the world, Australia and inbetween . Thats one side , people in America and everywhere else that write. Take no notice of who ever it was. You can ask questions and have a rant or say anything someone will reply .

    Hugs to you and hope to speak to you soon.

    Chris

  • It does not matter where you live to participate but we can forget that each country has their own treatment protocols and access to them can be very different. Farm

  • Absolutely it's for everyone, no matter where they are in the world. If you were told different by someone either on the main site or on a private message please report it to the administrators using the 'Report' button in the drop down box next to the 'Like' button or on the message if it was a pm.

    True, NRAS is a UK based charity but it does not preclude anyone from anywhere! Protocols & drug names may differ so it can help if overseas members make us aware of where they are in the world so we're not at cross purposes. I do hope this hasn't put you off being here with us, how unkind, unless of course they're a new member & unaware. x

  • Everyone is welcome in my eyes. :) Do bear in mind that we may not be able to answer specific queries about things like insurance and getting disability benefits in the country but the basic RA stuff is the same, no matter where you live.

  • Thank you it was on a post i had posted about my muscles feeling like i worked out 5hrs when doing simple tasks i know you wouldn't be able to help with insurance and doctor related questions but i just want to have a place i can talk with people who understand what im going through. Thank you for the welcome

  • This is dreadful,

    Please don't think that anyone else on this site would agree with this behaviour.

    I can't believe that anyone of the lovely supportive people who legitimately use this site would treat another sufferer in this way!

    You should report this as others have mentioned and post,rant, ask advice,give advice as much as you like.

  • Thank you i deleted the post i created and she was commenting on because i was so upset i have enough stress with people in my everyday life not understanding my RA i don't need it on here too. The thing is i was not asking for any help on doctors or insurance just a question if everyone else felt the muscels get tired and sore after doing simple tasks now which turned into her saying RA is not life threatening and people shouldn't take meds as its just pain and on and on then telling me i shouldn't be posting anything as im in US

  • I've been on this site for almost 2 years now and the people here are so friendly.

    Don't allow an idiot to upset you. as we all know every country has a couple of fools per capita. :)

    Sometimes we forget that this is a UK site and we post questions that don't make sense to the majority of people. For example , today I deleted a post I was writing because I was asking advice about MSP, CPPD and Pharmacare... I could have waited for a response but I needed advice ASAP. I ended up asking my nieghbour for advice.... Now my nieghbour knows my business.....oh well...The point I am trying to make is please feel free to be yourself. Who cares if you post a question that the majority of people can't answer? Someone from your country will answer in time.

  • Well if she said "It's just pain" she sure doesn't have RA does she folks? Before I had it I thought a bit like that........now I wonder why those lucky folk who don't have it need to be made more aware of just what a nightmare it is!

    I quite agree with you about being exhausted after anything even vaguely energetic.

    Of course you are welcome from the US! WECOME Jaclyn!

    AC

  • Yeah - You are totally right. The exhaustion is one of the worst things, and even though I am doing better on the inflammation / swelling / pain front, the fatigue is still there. I keep looking at the pretty yards around my house and wishing I could get out there to do the same thing. I think I am going to hire someone... REMEMBER TOO - your experience of RA is like your experience of the flu, grief, pregnancy, or taking a shower. It is YOURS and no one can tell you how you SHOULD feel.

    BTW - I've been driven away from more than one site by the "experts". I'm new here too, but these folks seem to be wonderful..

  • I'm shocked by this type of behaviour, who knows where anyone comes from. I take an American med and jolly good it is too. So do not be put off and I'm so sorry this has happened to you. RA affects people across the world.

  • Hi Jaclyn,

    That is a complete and utter nonsense and the offender does our country a disservice by suggesting that this forum is only for UK citizens! This forum is for all of us RAers and relate disease sufferers regardless of nationality, ethnicity and/or religious beliefs. There are members from mainland Europe, Canada, Oz, India, USA as well as the UK that I am aware of and probably from other countries that I am not aware of. Please report it... send a copy of the offending communication to the administrators and please keep adding your thought, feelings, experiences to this rich tapestry called HealthUnlocked NRAS forum.

    All the best

    Ali

  • Right, you are more than welcome here, talking stuff over, getting stuff off your chest, that's why we are all on this forum!!! Take no notice of the tools who tell you otherwise Jaclyn.

    Regards, and hope you feel less stressed soon.👍👍

  • Yes, of course anyone can join this forum, and for general support and information you should be able to get a lot of help. However as most people are in the UK, you may find that you won't be able to get good answers on things that are specifically related to US treatment, insurance, social security, etc. For that kind of stuff you would need to find a forum that was more US-centric.

  • You are wrong my American friend. Please report the rude person by clicking on the arrow at the bottom of the post that is offensive to you.

    Although this site is located in the UK, it is very welcoming and informative to everyone world wide. I'd be lost without this NRAS forum.

    Your Canadian friend

    Sue

  • The hardest thing about RA is accepting the new normal. Like many on here I thought when diagnosed they would give me some meds and I would get back to " normal ". Well I found out eventually over the 26 years that was not going to happen. This disease causes fear, confusion and it constantly changes. EVERYTIME we think we understand it another symptom appears. We need people to talk to, to discuss our fears, to gain knowledge to help us to make decisions about our treatment and our future. Everyone is welcome here, if you want to rant then rant, if you want to ask questions then ask. We are all at different stages in this disease so you will always find someone to listen and hopefully allay some fears. So welcome, we can't always guarantee you will not find the odd idiot but they are very rare.

    Take care

    Sharon

  • Thank you kind friend id be lost without this place everyone except the one in quarrying has been very welcoming understanding and carrying and we need that cause we might not always get that in our day to day life. I have no one on the outside except my husband and daughters which are 2 and 10 so i come on here to talk with others who understand.

  • I don't post a lot but I've always felt welcome when I do. I'm from USA so a lot doesn't pertain to me but I still get knowledge from everywhere I can. Sorry you ran into a grump, I think it's very rare here.

  • Your are definately wrong. I think you may be confusing us with Mr D Trump. He may make comments like that but i would be very surprised if any of the kind souls here would be so unkind. Hopefully you will find the same kindness, compassion and gentle encouragement here that i have found. Which should apply to any person, from anywhere, probably even Mr D Trump. (actually i think i may just not reply to Mr Trump).

  • Noooo don't leave please .

    I for one, welcome our friends across the pond :-) or any part of the world for that matter .

    I know there is a site American RA Warriors which I'm a member too .

    Doesn't matter where you are in the world .....we are all in the same boat with RA .

    Please keep posting

  • Thank you im on the American RA too but this one see ms more active and i like to talk with anyone and everone who understands.

  • That's exactly what we all like ..,,to chat to people who understand and that are going through their own battles .givinh each other support and comfort :-)

  • I live in Australia and I have been a member for a couple of years. Not sure who told you that but it isn;t correct. A lot of the referral services etc referred to here are only for people in the UK obviosuly, but advice, support and companionship have no borders as far as I am aware.

  • Hi everyone,

    Just to clear up any confusion, this is a forum for anyone with RA ( or similar conditions if they so want ) wherever they are in the world. It is UK based and mediated by people based in the UK but anyone can join from around the world.

    With this in mind, confusion can sometimes arise because of differences in the way RA is treated in the different countries. Please be respectful of this when posting and replying.

    Regards

    Beverley (NRAS Helpline)

  • Welcome this is a fantastic sight for everyone regardless of where they live. We all have different experiences and it is valuable to share them.

    Rudeness is unacceptable please report it to Admin to prevent it happening again, otherwise people may feel intimidated and stop using this valuable site.

  • You got an inflammatory arthritis condition? You're welcome here.

    (The club of which no one wants to be a member)

  • Hi Jaclyn - I'm from the US as well, and everyone here has been really good to me. I think you must have gotten hold of the "wrong" person. So sorry. The only things I don't / can't get into here are the processes because they are so different in the two countries. I agree with the others - report it. Even if someone disagrees, they should just say so with respect..

  • You don't say who this person is but they are wrong. You can talk to us whenever you like. No-one on this site will judge you, belittle you, think you are being silly or snub you. This site is for anyone with RA regardless of who they are and where they live. We all help each other and although we can't take anyone's pain away we can sympathise, exchange tips and suggestions and just know that everyone on here understands what we are going through. I would suggest that you ignore what this person says and put it down to their ignorance. Unfortunately, even in 2016 people have no or little knowledge of our condition until they are hit with it themselves. hope you will post again soon. x

  • I am so sorry your first visit was not a nice experience for you. We all suffer with some forms of RA here and to me I don't care where in the world we are we all need support and as far as I am concerned you are very welcome

    Regards xx

  • Hi Jaclyn,

    I agree with all the responses here. I am from Malaysia, I am not sure if there is anyone else from Malaysia? RA is a disease across the border therefore who cares where one from? What we want here is to share our experience and to learn from each other for our betterment purpose.

    When I read the posts here, that will give me some questions and thoughts to ask and share with my rheumatologist on the next visit. That I call the learning process from across the world.

    Just report her and just tell her to get away from you. What we want is the moral support and sharing of knowledge.

    RA patients general feel very tired, this is very normal. I slept most of the time during the day in my office those days. I am okay now since I am in remission.

  • Thank you im so glad your in remission i hope one day i can say that or even say im in care of a rhumy this wait is so frustrating im getting worse everyday and im scared its gonna get to the point i can't take care of my baby. Today i found its now affecting my neck and i have the worse pain and headache along with nodules on my neck behind my head. I just wish the us had a better medical system for RA waiting 6 months for a rhumy appt. Is crazy.

  • Dear Jaclyn,

    4 months after I was diagnosed of RA, during my physiotherapy session I was told not to walk like a machine. I was in great pain to turn my neck but I was told to try to do it else my neck would be continue to be stiff and it would lose its mobility in future.

    The medication needs time to work on us. Give yourself sometimes. Have a look at me now in the link below, I hope it can inspire and encourage you to move on.

    healthunlocked.com/ra-warri...

    Below are very informative and good RA videos to share. These are the most organized videos so far I found.

    healthunlocked.com/ra-warri...

    Don't give up. We are here to give you the moral support and we know how you suffer.

  • Amy lee ....the voice of reason .,as always :-)

  • Dear Fifi,

    RA patients need a lot of positive thoughts to help and motivate ourselves to live a normal life again. Drowning in pain and suffering will not give us a good and healthy life, this include people without any health issue.

    The decision is in our own hand on how we want our life to be. Generally, I will cut off those who are negative and put them in the fridge away from me because I believe in The Law Of Attraction. :-)

  • Hi Amy...I'm from Penang, Malaysia but I live in the UK now. Pleased to meet you!🌴🌴🌴🌺🌺🌺

  • Hi KSee,

    What a coincident, my name is KSiem...Hahaha. Almost matching. I am from Ipoh but live in Klang now. Nice to know that someone here is from the same country. Unfortunately, very sad to say that Malaysia is full of corruption. I was very active in NGO activities and actively involved in BERSIH-3.

    When I was diagnosed of RA 2 years ago, I slow down most of the activities. One year ago I continue the training program to train a lot of polling and counting agents. I also joined the polling and counting agent team during election for good and respected candidates. I was posted in one of the most remote longhouse to conduct the duty recently in 7 May 2016 for Sarawak State Election. There was no electricity and water supplies. The Iban are in the world of their own down there. They do not have any telephone or internet connection too. I had to be on my own should there is any problem during the dirty election if any.

    Beside being one of the life members of the Arthritis Foundation of Malaysia (AFM) and take part in their activities to share and to encourage others, coming weekend, I will be joining the medical camp in Batang Berjuntai, to provide free medical services for the kampong people there. I will be there to support a group of specialists to do some of the administration work and or to help checked their blood pressure, height and weight and so on.

    Life has to be continue. Actively involve in different kind of social works give me the satisfaction and happiness to move on positively. That will also help to motivate myself when I see many poorer folks out there who are in much more difficult situation than me.

  • This is the caption from this sites homepage and the reason I joined. I think some people need to re-read this. Shame on them for making you feel bad. I, too am in the US and have really come to depend on the people on this site for information. More so than my doctors. Post away!!!

    "Welcome to the community for people with rheumatoid arthritis (RA). This is run by the National Rheumatoid Arthritis Society (NRAS) and exists to help you find support and information from other people living with RA. You may be newly diagnosed or have had RA for some time or you might not have a diagnosis yet - everyone is welcome! "

  • No, stuff them. You are most welcome here. Take care xxxx

  • So sorry to hear you have had a bad experience on here. Please do not let it stop you posting and interacting, hopefully the person is in the minority. Sending you a big virtual hug.

    Donna

  • This was disturbing to read. Everyone is welcome. I did read a post similar to yours a few years ago, about someone going on about why people from other countries were on this site. Its because this is one of the very best sites out there. There is a respect among members not present on other sites, its run in a professional manner and a wealth of knowledge shared by many.

    I am from Canada and I have not found a better site than this anywhere.

    We may be from different countries, but dont let that divide you, we are all in this together. All the world should care about all the world...

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