Newbie

[Lynylou57]

Hi just joined I was diagnosed in March this year with pmr never heard of it until then.I am pleased I've found this community to share with people who too have pmr.

[Jackoh]

Yes for many of us this has been a life line and also helped us not to feel so isolated and alone. You may also want to purchase Kate Gilbert's book ( from Amazon) and the booklet "You are not alone" from PMRGCA northeast group. Both of these are good as well to hand out to family and friends if they want to know more about these conditions.

Jackie

[queenhermione]

Hallo and welcome. This is a wonderful site! I've found it very helpful and reassuring to hear so many different stories. Enjoy

[Lynylou57 in reply to queenhermione]

Thankyou for your kind replies . I've got to the stage where i cannot see a light at the end of the tunnel. Because I have neuropathy aswell its double trouble and none of my pain medication is giving me any relief at the moment and unfortunately i am having to use a wheelchair that is if i get out need someone to push me. I am totally reliant on family members hate it want my life back. Have appointment on 4th with gp writing everything down i need to ask him else will forget thanks to short term memory loss .Rant over lol

[DorsetLady PMRGCAuk volunteer]

Hi,

Welcome. As others have said this illness can be very isolating, so the best way to deal with that is to get as much information about it as you can. Unfortunately, that means you have to look for it, as suggested read Kate Gilberts book, written from a patient's point if view. There is lots more information on PMRGCAUK site and NHS site etc, but sometimes it's a bit overwhelming at the start, so digest it in small pieces when you feel up to it. Someone on here will always answer any questions you have.

You may have a lot of questions for your GP, but don't be disappointed if he/she can't answer them all - many don't know a lot about PMR! That's why this site is so good, we understand what you are going through, because most of us have been there, and we can give you some help to get through the bad times.

Take care.

[Lynylou57]

Thankyou dorsetlady already looked up Kate gilberts book up on Amazon will be buying it

[TooSore]

I would only add that if someone could post the link to the spoon theory, you might find it helpful for talking to family and friends. It made a big difference in the understanding of my teenager. She had difficulty at first with why some days I could do things and other days I needed to rest or even just the overall amount of activity needing to be reduced.. This spoon theory really helped her "get it".

[PMRpro Ambassador]

The Spoon Theory:

butyoudontlooksick.com/arti...

[karools16 in reply to PMRpro]

Gosh, that sure made very interesting reading.Someone asked me, at the bus stop today, how I felt. I was panting and puffing, but she seemed oblivious, and when I said I had water on the lungs, she said'but you look well'.

[RDy72]

I too am I newbie diagnosed in May 2016 really finding this community useful especially when I had a flare up and read to take it carefully. Thank you to all.

[Lynylou57]

Thankyou all for your lovely commemts already feel at home thanx guys x

[queenhermione]

Bad luck about the peripheral myopathy as well!! I have a friend with that.

Questions coming up...

How long have you had the myopathy? I assume your neurologist has agreed the pmr diagnosis. I'd have thought they'd be a good person to talk to about the whole thing.

Also, are you on prednisolone for the pmr? If so, how much? The pmr pain should fade away quite quickly if you are on the right dose (or at least you should notice a change). Mine virtually disappeared in 8 hours although my wrists are still a bit delicate. It means I can now notice other aches and pains that were masked by it eg frozen shoulder etc. If the pmr did originally go away, but came back as you reduced the dose then that might mean you did it too quickly. There's very helpful advice about ultra slow reducing in the files at the top.

Also, what pain meds are you taking? You might want to check with the neurologist to make sure they aren't clashing with the prednilosone...

Writing everything down is a very good idea. I'd check through it all before I went so that I knew which was the most important to ask first - but don't leave without asking everything (and writing down the answers!!!)

[PMRpro Ambassador in reply to queenhermione]

Picky me has to say - there is a big difference between myopathy and neuropathy!

[Lynylou57 in reply to PMRpro]

Yes it's peripheral neuropathy the neurologist diagnosed August 2015 they had to rule out MS first which they did by MRI scan waa put on Gabapentin went to highest dose of 3000mg daily didn't help so changed to pregablin in january helped a bit at first just bumped me up to 400mg 3 weeks ago no better worse in fact Rheumatologist diagnosed PMR in March this year started me on 12.5mg daily the pain in my neck and shoulder went within 3 days so after few weeks tapered the predisnole but by 6mg was in such pain gp put it back up now on way down 1mg monthly. I am in chronic pain daily never let's up so confused which it is causing pain also type 2 diabetic but that's behaving sorry for long post

[PMRpro Ambassador in reply to Lynylou57]

Never apologise for a long post! Sometimes you cant leave bits out and it make sense!

[queenhermione]

If you were on 12.5mg in March and it worked, then you've probably just whizzed down too fast. Many people seem to take at least a couple of years to creep down to, say, 6mg. Take a look around the site to see other people's stories, especially flare ups. It's a case of more haste less speed.

If you reduce pred too quickly, either:

the pmr comes back in a flare-up

Or

You get side effects from reducing pred too fast (which includes pain!)

Or possibly both!

If you are in bad pain from the pmr now and pred controlled it well at 12.5, then many people would start again at the beginning and take it much more slowly. 1 mg every month is very very fast!! And the lower your dose the bigger you've reduced. Bear in mind people say a maximum of 10% reduction seems to work (and many go for smaller steps) so...

1mg off 12.5mg is 8%

1mg off 10mg is 10%.

1mg off 5mg is 20%

You can see that between 6mg and 5mg is a much bigger jump than between 12.5mg and 10mg (and even this is hard for some people in one jump)

I suppose they are concerned about the diabetes/pred but there's no point in taking the pred like this. It's not a cure for PMR; it's a calmer-downer of symptoms while your body takes a rest and gets over the PMR.

PMR can be very disabling without everything else. I thought my life was over, ruined and this was how it would always be but normalish life is back now, so don't give up!

[Lynylou57 in reply to queenhermione]

Thankyou that's helped i will discuss it fully with gp im just doing wat they tell me I'm sure i will get there in the end im glad you're having a normalish life again bless you all lynda x