I would like to attend a local support group to m... - PMRGCAuk
I would like to attend a local support group to meet other people with PMR and/or GCA, and have practical advice from expert speakers
Access to local resources would be great
These are already on offer in some parts of the UK.
Some areas seem to be very well covered, particularly urban areas. Unfortunately if you live in a rural area there is a much larger area to cover and therefore makes it's more difficult for groups to be formed. If you feel really unwell, the last thing you feel like doing is travelling fifty or sixty miles for a meeting. But that's life I guess, which is why this forum is so important to so many people. DorsetLady
Absolutely agree - I am 60+ miles from my nearest group, but when I made the first visit (to North Cumbria group) I felt so much better for looking round the room and seeing lots of people all with the same problems, and being able to talk with them. After 5 years I still don't know anyone in my locality with RA and GCA, so always make the effort to get to meetings. What the rheumies and GPs don't tell you at the start is that you are going to be responsible for monitoring yourself, and to some extent treating yourself according to how you feel. Which goes completely against what most of us are taught to expect from health professionals! So I felt all at sea for years, and very alone. Thank you for this forum, which has increased my knowledge and therefore confidence, enormously. Venezia1
Where is the north Cumbria group? I live in ingleton.
Hello, Venezia1, I feel exactly the same as you with regard to the medical profession. My GP has never monitored me and I had never seen a rheumatoligist in three years until recently, when my self-monitoring resulted in my blood readings being nearly twice as bad as my initial readings, when my GP then described them as " deranged". I had been following her 'prescribed progamme' for steroid withdrawal and she didn't once initiate any contact with me, or suggest that I should have with her. I have now been slapped back on a high dose of steroids, with all that that entails and still no defined contact. I have come to believe that we sufferers are more knowledgeable about it than those who are supposed to be treating us - certainly GPs.
As you say, thank goodness for this site and the wider Internet or I think we would all be so much more ignorant of these conditions
and the isolation and lack of understanding they can bring.
I wish you well, Mega
I voted no simply because I have all the support and information, from my rheumatologist, GP husband, interested friends and the forum so I am fine. For other people especially those with complex needs a group would be a real bonus.
I am considering whether to start a group in my area, south/mid Kent as the nearest group now is in North Kent and quite a long way away. I don't know yet if there will be enough demand for this.
I have voted Disagree because I already belong to a wonderful Support Group in Chertsey Surrey..They are wonderful people and give lots of advice. I have just been through months of misery and they have been there for me and so has this Forum. trish29
I have voted Disagree because I already belong to a Support group in Chertsey Surrey . There has always been wonderful support at our meetings and also from this Forum. trish29
You are very lucky!
Hello NanaB43 ..yes I am lucky to belong to a Support Group and it was recommended by my Osteopath because I was going through lots of problems at the time, and as PMR flare-ups come back to bite you these bad spells still occur. When I come back from a meeting I feel that I am not the only one with this condition , others are suffering to . Sometimes we have speakers that talk about Medications. Our Diet and anything connected to PMR/GCA. I have also found that since belonging to PMR/GCAUK and HEALTH UNLOCKED I Have learnt a lot about medications and Natural Supplements .. I hope you can find a Support Group near you. trish29
Sorry, I have voted no because when I was in the grip of GCA and really could have done with some support I could barely get from my living room to my bedroom, let alone attend a venue. More power to your elbows though! I may attend if there's one in my area when I'm finally shot of this horrible condition, just to display that it can be beaten!
Mega, there is a support group that meets on the South Coast (Worthing) so if that is near enough we can give you further details when you feel ready.
Celtic - please can you tell me the dates for the next support meetings that would be the nearest to me (I live in East Grinstead, West Sussex). My husband has retired to look after me and is willing to drive me to any of the meetings. Just not sure where the nearest would be? It would be so uplifting to meet some of the wonderful people on this forum who are in the same boat. Maybe your group in Surrey would be possible, or maybe Worthing, or Tonbridge. Any advice and direction would be most appreciated. Thanking you in advance. Love and Blessings. Healthopes
I have voted disagree because I'm quite shy and I'm happy to 'chat' on here
I would love to be able to go to a support group and meet other people and compare notes but there is nothing in the Oxfordshire area
Only just seen this, are there any support groups in the West Midlands?
visit pmr GCA uk website, it carries details of all support groups.
I live in solihull West Midlands not far from Birmingham airport and have tried for two years to find a group or some sort of support but have never been able to find any.
I've just been discharged by my rheumatologist and my ear and crp have gone up. I just wish I had someone to compare notes with so to speak.
Dear Chynnamoss
There are now 17 support branches each run by volunteers who have or have had PMR or GCA. They are supported by PMRGCAuk. Sadly there isn't one at the moment in the Birmingham area. BUT the charity has about 20 members living not far from you in the West Midlands and maybe there are others on our HealthUnlocked forum.
We've been running a branch in Bromley, Kent for a while. Recently we split the branch into four smaller branches in Kent & East Sussex. Now more members can attend meetings - Maidstone, Hastings, Sevenoaks and Orpington. Members come along to compare notes, share local information, they no longer feel isolated and they meet new friends - and the friends understand that they may look well but that isn't how they necessarily feel!
If you would like to be part of a new branch in the West Midlands we can help by putting you in touch with others who feel the same.
We will help you to find a suitable venue, assist in getting the branch off the ground; we can put notices into local media and information on the charity's website and in our newsletter.
It only takes one, two or a few who want to meet up! So many people feel like you.
Email me at polymyalgiaplus@gmail.com and we will do as much as we possibly can to help you find some others in your area to meet up with.
And if you're reading my reply but don't live in the West Midlands the same offer is there for you. Email me to find out if we have members living in your area. PMRGCAuk wants everyone in the UK to be able to be part of a branch if they wish to.
Details of existing groups are on the Charity's website: pmrgca.co.uk/groups/
Penny Denby
Chair of Trustees
PMRGCAuk
Moderation team
