I posted on here for the first time last week having been recently diagnosed with PMR. I got so many replies, which really lifted my spirits. Everyone was so positive about this forum, said how it had helped them over times when they were struggling with their personal battles.
I have read some posts today, I don't understand all of the abbreviations, but most of them boil down to the same thing, we are all looking for advice as it seems like we are all self-medicating, and when we get some symptoms back are not sure what to do for the best. I know how that feels, it is why I first joined the forum. I'm struck by how little information and understanding there is from the organisation we put our trust in, the doctors!
I don't want to go into my feelings about the state of the NHS in general. What I do want to say is Thank You, to whoever started this forum, and to everyone who contributes. Without this forum it seems that there would be thousands of people like me, who feel they have no one to turn to.
I don't feel able to answer some of the posts, as I think giving advice about medication when I am in the early stages of taking the Pred difficult. I'm still learning, and I can see from the posts that a lot of people are in the same boat. But I do find just reading some of the posts helpful, comforting and just plain nice to know that I'm not doing this alone.
Wendy
Written by
greencyclist62
To view profiles and participate in discussions please or .
You are very welcome... and if you don't understand abbreviations just ask [there was a link on here, but it seems to have disappeared for some reason] - or very often if you look it up - google will supply an answer... won't guarantee that's always 100% correct though.
You don't have to answer anything, many don't .., but as you go along you will find you can chip in with your experiences - that's what it's all about.
.. and no you are not alone.. I think almost everybody felt like that at the beginning...
This is actually the 3rd forum of its type. The original one was part of what is now patient.info and EMIS which was set up by a couple of Yorkshire doctors to provide reliable on-line information for their colleagues. Five ladies "met" there on a patient forum for GCA, got the GCA and PMR threads joined together and banded together to lobby for a charity to support GCA and PMR patients and get better treatment as one of them had realised that nothing had changed since her mother had had GCA some 30 years before. I joined a few years later and became part of the NE of England charity which that lady had set up in the meantime off her own bat and with the help of the already extant Scottish charity. A lady in France found us and offered to set up a specific PMRGCANE charity forum which ran for a few years before someone decided the by now formed PMRGCAuk needed one of their own and used the HU platform.
Now this is the largest and furthest reaching PMRGCA forum in the world! In fact, the motto of the NE charity was "You are not alone" and their DVD of the same name is now available to watch on YouTube - and using "you are not alone pmr gca youtube" in google brings up the link on the forum.
As DL suggests - try google for an abbreviation, adding "medical" often helps and if totally stumped or confused - ask. She or I will see it if no-one else does and demystify it.
I think it is very important to ‘talk’ to people who are in the same boat as you are. Doctors are taught academically about diseases, but it is very different when you actually have it. Perhaps that is why medical people are supposed to make the worst patients. It all comes home to roost!!
I totally agree with you all. I have learnt so much about PMR since I’ve been on here and have found all help invaluable so would also like to thank you. I have had a flare this week and had to increase the pred but feeling so much better now. Each time this happens I get a bit lower! Without this forum would have been at a loss how to manage it!
I am so thankful I stumbled across this forum. I visit the site everyday. It gives me great comfort and reassurance while dealing with such an unpredictable disease. I would be lost without everyone’s support and advice.
I will be forever grateful that even though I am all the way down under in Australia I can still belong to such a supportive community.😘
Have you read the book? This forum is fantastic I agree with you and has helped me enormously - I read the book before I joined. Kate Gilbert's Survival book - easy read and very informative.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hello everyone
Sad
How many of us support PMRGCAuk with $$ as Members, I wondered....?
