Can of worms

[Lucky88]

Grief, this forum has certainly opened my eyes to a can of worms! I have to keep deleting this post as I get carried away with documenting the last 9 months of hell. The speed of onset, the degree of pain, immobility, the confusion over diagnosis, the severe gastro issue that arose, the lack of sleep, the multitude of medicines thrown at me, the cost of going private just to get to see a specialist to stop the pain, the lack of guidance given . . .

I have been prancing about like an idiot, happy to be released from most of the pain by taking Predinisolone for the last 6 weeks, though from what I see here, there are a number of issues I need to watch closely and certainly some further problems to anticipate. The information that flows here from Dorset to Adeorjan and PMRpro for example is just excellent. Much appreciated. For me, back to the local golf course as soon as the flood waters drain. On with the booking for Crete in August and check the bucket list before things get too rusty. Piglette, the Merlot last night did no harm!

Are there any group meetings in SE England? Direct discussion and perhaps mutual support would be good.

[PMRpro Ambassador]

Where in the SE? It is a big area and there are a few!

pmrgca.co.uk/groups/

[Lucky88 in reply to PMRpro]

I'm down in East Sussex, Forest Row, 3 miles East of East Grinstead.

[PMRpro Ambassador in reply to Lucky88]

Did you click on the link I gave you? You seem to be neatly positioned in the middle! Oxted is probably the nearest, then Sevenoaks and then Chertsey. The only one I know anything about is Chertsey - and it comes highly recommended!!

[Lucky88 in reply to PMRpro]

Thanks, I have sent an email out to make contact.

[piglette]

Hi Lucky88, your experience pretty well mirrors mine, particularly being forced into going privately. An American friend and I had champagne yesterday, then my next door neighbour came round and helped finish it! It definitely brings a smile to my face.

[DorsetLady PMRGCAuk volunteer]

Hi Lucky88,

Just a tiny word in your ear - you may feel great at long last after all the pre-diagnosis hassle, but... yes I know there's always a but! You do still have the underlying illness, the Pred is not doing anything for that, it's just controlling the inflammation caused. So you need to be aware that you are still going to be more fatigued, and your muscles do take longer to recover than pre PMR days.

So, by all means back to the golf, but not as energetically as before. Maybe use a buggy, even if in the past you haven't - no shame in that! And learn to pace yourself, that really is the most important thing - and very often the most difficult. We've all had busy lives pre PMR/GCA and used to doing half a dozen jobs at once. That has to stop for a little while, no matter how frustrating it is!

You can still carry on enjoying life, but you need to do a bit more forward planning now. If you anticipate the problems and think of ways around them, they are no longer problems!

By all means keep the bucket list going, but don't overfill it!

[Lucky88 in reply to DorsetLady]

Thanks Lady Dorset, great advice. I have been feeling guilty about the tides of fatigue that sweep over me now and again and counter them by mowing the lawn or walking the dog. My working life has always been pretty demanding and I have balanced that with a fairly tough social regime! It is weird for me now, settled back here in England after 25 years in the far East (China mostly) and retired from the race with my wife and our 10 year old daughter.

I must confess that I was rather under the impression that these tabs had me on the right track and after a year of weaning down, I'd be off them with little / no residual effects and back to normal "me" . . . . so maybe a little rethink eh?

[DorsetLady PMRGCAuk volunteer in reply to Lucky88]

Hi again,

You won't be first nor the last to think that. Doctors don't help, they are a bit economical with the truth sometimes, or just don't know!

The Pred will make you feel better, it controls the inflammation caused by PMR or GCA but it absolutely zilch for the illness itself. So as long as you have PMR you are subject to fatigue - par for the course I'm afraid! Your illness can last 2yrs, 4 yrs, 6yrs, sometimes a lot longer, but average is about 4years. It seems to appear out the blue, hangs around for a while causing havoc, and then disappears when it feels like it! Having said that, men do seem to get off more lightly than women though, not really sure why. I always say that because the immune system and the Pred affect hormones, and they seem to be more complex in women - don't have any actual proof of that though.

Glad to hear you are going to join a local group, some are more "organised" than others, but a good chat over a cuppa makes you feel less alone. You can always learn new things and how others cope with their trials and tribulations!

Good luck.

[CT-5012]

Try finding PMRGCAuk on the internet for groups for people with pmr or gca they also have lots of information leaflets. Good luck.

[jinasc]

pmr-gca-northeast.org.uk

Click on the map of the UK on the home page...........links to all support groups and three charities which all work closely together.