Green_girl10 years ago

I have the good fortune to be under a superb Rheumy - but even so, she could not spend the time needed to discuss things fully - nor did she have the ability to get practical, day to day help for me - and no advice on how to gain this was available at that point either.

iforget10 years ago

The medics I see are all pretty good but they have their areas of expertise and are not exactly hot on practical aspects in the same way as those with first hand experience. Having access to info from people truly "in the know" helps a lot

jinasc10 years ago

The above two comments were why Support Groups and the three Charities were set up.

EdithWales10 years ago

Again I voted no simply because I am very well supported however many are not so lucky

annihami10 years ago

I echo Edith Wales comments.

I consider myself fortunate..

mega10 years ago

Oh, what a difference a bit of practical support would have made to me in my 'journey' through GCA . I won't bore you all with the fine details but widowed, just before we moved into a lovely flat in a new location. Had one bout of GCA not long after, which went undiagnosed. Although my GP tried her best, I was eventually sent to Oncology at the hospital who were equally puzzled, after all tests (thankfully!) proved negative. After a period of about six months though, I gradually began to feel better and eventually got back to normal. I have since read that this can happen within a year of first contracting the demon - after that, it's likely to stick around for some years.

Now in my mid seventies I have been contending with my second bout for 3.5 years while also 'suffering' AF, skin cancer, cellulitis and long-standing thyroid problems plus other more minor problems and the horrible effects of the steroids - talk about a double-edged sword. Almost instant relief of symptoms initially but long-term use creates others . The skin cancer necessitated an hour's drive for treatment but no-one asked how I would manage that. It meant an hour's drive for my son to pick me up, an hour to drop me back and then an hour for him to return home. Then about nine months of diminishing time intervals for return visits of three or four minutes 'treatment'. All when I was feeling very unwell and living within five minutes' drive of our local hospital.. After the second visit I put a stop to it and my GP agreed to check that the cancer hasn't spread; she does when I remind her.

Having been physically pretty active before all this started, I have had to sit and allow my flat to degenerate to almost squalor at times. I just have not had the energy to cope with it. It bothers me enormously but, unlike some of you poor people, I have not been blinded. Maybe I should get my priorities right?

In the course of dozens and dozens of surgery/hospital visits, most of which have entailed taxi fares, which must add up to hundreds of pounds, no-one has ever asked me how I manage on my own. Thank the powers that be that I am comparatively computer-literate. My life depends on it for food, banking, info etc and yourselves, of course. I swear I know more about this condition from following your postings, than I would ever have gleaned from the medics I've encountered. I wonder how others in my position who are NOT computer users are able to manage though.

Sorry everyone, I've gone on longer than I intended to and I do realise that some of you have more to contend with than I have and you have my utmost sympathy. Could we do with more practical support though? Undoubtedly YES!

Best wishes to everyone who are in the throes of these debilitating conditions Get well soon.

Mega X

Carris10 years ago

I have learned a lot from this site, in fact after seeing my first rheumatologist , i told my gp that i would not see him again. He evidently had never treated anyone with PMR. My gp and I are moving along very well. Down to 3mg and it has not been two years yet.

Jeanieallergy10 years ago

I have learned everything about this illness from this website. My gp is happy to let me 'self-medicate' but really knows very little about PMR and can offer no advice.

estherdevers10 years ago

badly needed. Seems nobody can really help with this problem

estherdevers10 years ago

Seems that nobody can help with this problem. Badly need help