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PMR and GCA Support The interactive forum giving you an opportunity to make new friends and chat about PMR and GCA.
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The time now is Thu May 17, 2012 8:49 pm |
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| Forum | Topics | Posts | Last Post | |
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| INTRODUCTION TO THE FORUM | ||||
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*** POSTING LINKS - PLEASE READ ***** ***IMPORTANT ***ALL MEMBERS PLEASE READ NEW REGULATIONS FOR USE OF FORUM ***** LINKS NO LONGER ALLOWED |
1 | 1 | Wed Nov 30, 2011 4:21 pm ChristineB  |
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IMPORTANT - DISCLAIMER - PLEASE READ. WILL ALL MEMBERS PLEASE NOTE - Submissions to the PMR and GCA Support forum are the views and opinions of the individual contributors. The administrators can take no responsibility for the accuracy or reliability of any medical or other opinions expressed in this forum. Moderators ChristineB, Pammy |
1 | 1 | Sun Feb 27, 2011 11:37 am ChristineB |
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WEB SITES For security reasons we cannot add web sites to our details at the moment.... please read Moderator ChristineB |
1 | 1 | Sun Mar 20, 2011 4:09 pm ChristineB |
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Forum Rules Nothing too strict! Just general house rules to make sure we don't offend anyone or cause any offence or confusion. PLEASE READ |
1 | 1 | Mon Mar 21, 2011 1:49 pm ChristineB |
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Who is this forum for? Why has this forum been set up? Who runs it? Can anyone join? ...... Find out more here Moderators ChristineB, MrsE |
2 | 36 | Thu May 03, 2012 8:31 am sparklin |
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What do I have to do when I use the forum? There is no need for you to have computer qualifications, anyone can take part. For help to get you started use this topic Moderator ChristineB |
2 | 21 | Sun Apr 10, 2011 7:51 am ChristineB |
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How can the forum help me? Not all of those with PMR and GCA can get to meetings of support groups. Not all members of the forum will have PMR or GCA. We know how we THINK we can help - but would like you to tell us what you need as well! Moderators ChristineB, CatieP |
3 | 34 | Thu May 17, 2012 1:50 pm LindaS |
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Getting to know you It is always good to meet new friends. For those who are struggling with PMR and GCA the support and friendship of those who understand is invaluable. So, don't be shy, when you join the forum introduce yourself here and tell us a little bit about yourself so we can get to know each other properly. Moderators ChristineB, Pammy, CatieP |
82 | 2696 | Thu May 17, 2012 6:24 pm Lizzie Ellen |
| BEGINNERS GUIDE TO PMR/GCA | ||||
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FAQS about PMR/GCA At first the prospect of life with PMR/GCA is quite daunting. You will have lots of questions but may not know where to look for the answers. They are all on this forum somewhere but to give you a quick and easy start, here are a few of the most common questions and brief information. Moderators ChristineB, Pammy, CatieP, MrsE |
1 | 1 | Thu Jun 09, 2011 4:51 am ChristineB |
| QUESTIONS AND COMMENTS RELATING TO FAQs | ||||
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MORE INFORMATION NEEDED?? Due to the fact that the FAQs category is closed, we thought that there may be a need to provide a topic for members to ask for further information about specific questions. So that the details don't get mixed up I have set up each question as a new topic so that replies can be accessed more easily. Hopefully this will make everything more logical! Moderators ChristineB, Pammy, MrsE |
43 | 534 | Wed Mar 28, 2012 4:52 pm MrsO |
| HEALTH AND MEDICAL ISSUES | ||||
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What is PMR? Polymyalgia Rheumatica is a complex condition that most people have never heard of! If you, or someone you know, has just been diagnosed with it you will want to find out more. Hopefully we can help you here... Moderators ChristineB, Pammy, MrsE |
2 | 95 | Fri Feb 17, 2012 5:15 pm sparklin |
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What is GCA? Giant Cell Arteritis is often, though not always, connected to PMR. Symptoms are sometimes rapid in onset and need urgent intervention. Discover more about it here.... Moderators ChristineB, Pammy, MrsE |
9 | 342 | Thu Mar 01, 2012 3:07 pm CatieP |
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Research Historically there has not been a great deal of research done into PMR and GCA but things are changing. There is now a greater awareness and hopefully that will lead to more information being available regarding causes and treatment. As we discover important new issues we will add them here to keep you up to date. Moderators ChristineB, Pammy, MrsE |
4 | 29 | Wed Apr 04, 2012 9:38 pm meggies |
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CLUB ZERO - MEMBERS ONLY POSTS! This section is just for those members who have been through the horrors of PMR / GCA and have come out safely at the other end! Those who no longer take ANY Prednisone. Please let us know who you are and how you got through it?- Join the CLUB ZERO!! |
3 | 3 | Tue Apr 17, 2012 5:30 am Green Granny |
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CLUB ZERO - COMMENTS/ REPIES We all want to congratulate those of our members who have - at last - joined the exclusive CLUB ZERO! But we don't want to get the posts all mixed up - so if you have a question or a comment - or just congratulations to offer - please post it here |
2 | 43 | Wed Apr 25, 2012 8:09 am meggies |
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Medication and treatment There are many different approaches to PMR and GCA. Not all of them timely and suitable for all. Many have nasty side effects, some of which can be overcome. What are your experiences, or questions? Moderators ChristineB, Pammy, MrsE |
210 | 5772 | Thu May 17, 2012 7:26 pm Sarah G |
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How long to your diagnosis? We've all been there and we know that you can suffer for months before you discover the cause of this mystery ailment! Tell us about you experience with the medics. How long did it take for your condition to be diagnosed - Your story could help others who are going through the same thing! Moderators ChristineB, CatieP |
12 | 379 | Thu Apr 26, 2012 4:41 pm Charlotte H |
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It started out of the blue...Or did it? We all have our own theories about what caused our condition. The medics have their theories as well. But are there any factors in common that we have experienced ourselves? Moderator ChristineB |
8 | 207 | Wed May 09, 2012 2:43 pm sparklin |
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Theories of the causes of PMR and GCA We know what the medics say but there must be many of us with our own theories. The medics may not consider our ideas but are they really a load of coincidences? What do you think? Moderators ChristineB, MrsE |
5 | 194 | Sat May 05, 2012 8:27 am Mrs K |
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Diet and Exercise Both very important issues generally, but for those of us on certain types of medication it is vital that we understand what is best for us. Types of exercise, best dietary advice, even the dreaded alcohol issue! Share your thoughts here Moderators ChristineB, Pammy, MrsE |
36 | 888 | Thu May 17, 2012 7:10 am MrsE |
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Get Well Stories Some days we can't imagine ever feeling well again, but one day we will! We all need a beacon of hope to get us through the darkest hours. If you have come through the worst of PMR/GCA and are beginning to feel that you can definitely see an improvement PLEASE share that news with us. Moderators ChristineB, CatieP |
24 | 707 | Thu May 17, 2012 8:08 pm beev |
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Media Reports From time to time we may spot an article in a newspaper about PMR and GCA. Whilst the information may not be always accurate, as they say...... 'any publicity is good publicity'. Anything that raises public awareness of these conditions has to be a good thing. If you see any articles or news reports - share them with us ..... Moderators ChristineB, Pammy, MrsE |
7 | 38 | Thu May 17, 2012 8:47 pm MrsO |
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Support Groups and local information We hope you will all find this forum helpful, but there is no substitute for becoming a member of your local support group and taking advantage of their, more personal, advice newsletters and occasional lectures from rheumatologists etc. Links to Support groups and dates of meetings can be found here. ALSO - We don't want to reinvent the wheel when there has been a great deal of work done by other agencies. Here are some links that may be useful. Moderators ChristineB, Pammy |
29 | 392 | Sat Apr 21, 2012 4:25 am elstep |
| THE SOCIAL NETWORK | ||||
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The Chatter Box We don't live, eat and breathe PMR and GCA, even though it does feel like it sometimes. So relax, have a cuppa and pop into the place where you can share your general thoughts and ideas. Are you annoyed about something? Do you want to let off steam? Or do you want to share a wonderful experience or have a bit of fun! It doesn't have to be about your condition, it can be anything you want to talk about. Moderators ChristineB, CatieP |
417 | 10553 | Thu May 17, 2012 7:18 pm paininthehead |
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Friends and family support Our loved ones mean such a lot to us but do they really UNDERSTAND? Do we actually help them to understand? Do you have a friend or loved one who has PMR and/or GCA? Would you like to share your experiences? Can we help each other more by sharing our knowledge? Moderators ChristineB, Pammy, CatieP |
6 | 149 | Wed May 09, 2012 2:45 pm sparklin |
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Practical issues How have you coped with stairs? Is a shower easier than a bath? How do you manage with the day to day things that were so simple before/ Do you go to work? Have you approached Social Services for practical help? Are there any benefits available to help that we may not know about? Please share your knowledge and advice on all these issues here.... Moderators ChristineB, MrsE |
21 | 580 | Wed May 02, 2012 5:58 pm Charlotte H |
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Window Shopping It may be something that makes day to day life more simple, a shower seat, a long handled brush and pan set, an ironing seat! Or it may just be a fun item, a new piece of kitchen equipment or a nice piece of jewellery that you have treated yourself to! If you have discovered something that you think others would like why not share it with us? Moderators ChristineB, CatieP |
2 | 56 | Tue Mar 06, 2012 5:00 pm BettyE |
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Transport and Holidays The thought of going away from home can be a daunting one. There are so many things to consider when mobility and sight is an issue. Have you been somewhere that a you would recommend to fellow sufferers? How did you cope with long haul flights? Did you have to have any medical care in a foreign country? By sharing your information you may help others to enjoy a much needed break. Moderator ChristineB |
7 | 141 | Wed Feb 22, 2012 5:50 pm Charlotte H |
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Poets Corner Have you seen a poem that you think would help or make us laugh? Do you write poetry yourself? There are many people who find that, by expressing themselves in verse, they can show themselves and others how to understand their difficulties. Or it could simply be a poem about everyday life - or a beautiful sunset. Go on - give it a go! Moderators ChristineB, CatieP |
53 | 405 | Mon May 14, 2012 9:35 pm MrsO |
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Healing thoughts It is always nice when someone tells you that they will be thinking about you. How much nicer when they tell you that they are sending you lots of love and healing thoughts. You don't have to be 'Religious' to send someone Healing thoughts and Prayers (if you are so inclined) but it does help. If lots of people join in it can only be a good thing. So if you know of someone who would benefit from a boost - just ask and there will certainly be members who will do their best to help. Moderator ChristineB |
7 | 60 | Sun Apr 29, 2012 6:50 pm Sarah G |
| ADMIN AND TECHNICAL SUPPORT | ||||
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Having a technical problem? First of all have a look at the FAQ heading at the top of the front page. If that doesn't answer your question ask here. We may not be able to offer an instant solution, but we may know someone who can!! Moderator ChristineB |
18 | 130 | Fri Mar 09, 2012 5:49 am Pammy |
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Forum Suggestions The topics on this site are not inexhaustible and there are certainly many more that would be of value. If you have any ideas or suggestions please let us know Moderator ChristineB |
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