Being re-referred to hospital

Granny Moss am there with you.... have been having the greatest difficulty in coming to terms with PMR and how it has affected my life at 59...... being terrifically active and walking miles and doing long distance walks and walking holidays.... to hobbling in pain to a shop five mins away :cry: :cry:

Has been the greatest challenge of my life so far and it is not going to beat me!!

My husband and I have had to both sit down and sort out the immediate future because we had so many plans for travel etc which will now not be possible because of how I am :cry: :cry:

At this point in time just want to be pain free..... don't care how high the steroid dose is!!!

Know it will take time to adjust but still struggle and want to be out and doing things I 'used' to do........ spend lots of time on my own in the house now, not being able to do things here too... so have to get used to it.

My grandaughter changing daily which is the biggest upset as cannot be with her as I would want......but hey ho...... have to remind myself this is not a killer disease like cancer and although my life has changed radically, will get to a better place eventually..... :lol:

Hello Granny Moss

Well we think you are amazing what you do and if you are doing all those escalators bus trips etc I think you are getting plenty of exercise !! Do make sure you are getting plenty of rest as well I always find I am better not to sit for too long and if I am home for a while I try and potter around a bit

I understand where all of you are coming from as I was only 54 when my first bout hit and I really thought I had been over exercising as i was doing 2 Aerobics classes 2 more Gym days Riding my horse and didnt know what had hit me Had at that time never heard of PMR but I have heard plenty since !!

With my first bout once I had the steroids the pain went but I used to get times of complete exhaustion where sometimes I didnt have the energy to put one foot in front of the other and now I know a bit more about this I think it might have been steroid withdrawel as I went down the doses very quickly This bout has been a roller coaster and totally different I didnt know you could get it twice Im just hoping someone doesent say they have had it 3 times !!!!!! It is a big adjustment mentally but I still consider myself lucky as in the last few years I have known 4 people with cancer of the osophegus ,3 friends sisters die with breast cancer , one friend who has had cervical and breast cancer and after each op her first remark would be pass me a mirror and my lipstick !!! so I just enjoy the things I can do

Hope everyone has a good weekend out with friends tomorrow night so looking forward to that

Best wishes

Mrs G

Eileen H....will take the toyboy first :wink: ...if he has a wheel barrow so much the better as my poor garden is in a very sorry state after the winter snow

Granny Moss..I am in awe of you as i am only 52 and the very idea of more than 30 minutes at the shops fills me with dread :oops: , but then I have never enjoyed shopping with the exception of antique & art markets...could spend all day browsing in them :wink:

Fiftiesgirl...if it is of any help to you, I went to Antigua for 10 days last November with my hubby and the heat there really helped my PMR...I could do far more walking and had much less pain in the warm climate 8) .

I am going to the canaries in two weeks time with my daughter for a \"Heat\" top up then going to Mexico at the end of March with hubby as he feels the heat definately helps me....am I going to argue....DEFINATELY NOT !!!!!

I did not have any problems with the long haul flight as I got up and walked around the plane during the trip and as I woke earlier when away I did not really have to change the time of my meds much...so if you feel that a holiday would help you my advice would be to go for it as it may be just what you need right now

Love to all, Pauline

Fiftiesgirl,

Forgot to say in previous post....make sure to check with your insurance if you are going anywhere that you are covered for pre-existing conditions as some companies do not offer that cover.

I get a letter from my doctor stating that in his opinion I am fit for travel 8) .

The other important thing is to carry your meds in hand luggage with a copy of your prescription \"just in case\".

I try where possible to travel to areas that have a fairly accessible medical system and carry a print out of my medical history and current drug dosages with me....I use google translator to translate into the language of where I am going if the first language is not English......probably a bit OTT but it makes me feel more confident :!:

best wishes, Pauline.

Pauline..... because of where I am in the grand scheme of things with PMR ( a virgin!!!) I thought travel out of the question primarily because my pain levels not under control since beginning of Jan and thought of being anywhere with pain makes me feel sick!

Our original plans to travel to Argentina/ Uruguay/Paraguay in November this year for one month....... at this point in time could not contemplate it. Do you all think by this time this year I could?

So.... does warmth of a different climate really make a difference? If so my hubby and I will look to go away early spring.

Hello

That is good advice from Pauline re your insurance and medications I had to notifly my insurers re my husbands medication ( BP cholestral just preventaitive ) and my illness and medication I have a policy on my bank account and they just added a letter to it

Re travel well I really feel I am better in the sun apart from the fact I came back from Lanzarote at New Year with cough cold etc and I still have this recurring throat problem which is a nuisance I have only done European travel max 4 hrs with this and I do feel a bit stiff after the flight but I find the daily walks in the sun do me a lot of good I now make sure I am organised and packed in advance so I am not doing too much the day before I always have lots of sorting out to do with my horses before I go so also try to stagger that a bit as well We have tried to fly locally as much as possible so there isnt a long car journey as well so i think it is a case of making it as easy as possible for yourself I had actually booked to go to Prague last March before I had my January blip and I was worried about it but I felt fine and walked much more than I thought I had been there a few times before so thought if I cant walk too far it wont matter but it was great and just wrapped up warm

Your big trip does sound very ambitious at the moment and i personally wouldnt book it until I was really stabilised and reducing well as insurance companies are always keen to wriggle out of anything but something easy to some nice warmth Im sure would help Certainly does for me !! When I asked my Dr about Vit D she said judging by how much time I spent in the sun I should be fine !!!!

Best wishes

Mrs G

Hi Fiftiesgirl,

If its of any help...the first day I was away I could only swim a few strokes(no stamina or strenght for more), but after a week I could do the equivalent of a pool width :lol: and I could walk much further without getting tired.......so the heat definately helped, and as a major plus I had no pain and was able to reduce my steroids by 1mg when away :wink: .

I would hope that by the end of the year or early next year you will definately be able for your trip to South America and it would give you something lovely to look forward to 8)

I will be reporting back after my trip to the Canaries (19th-26th feb) to let everyone know if the heat has the same effect...am hoping it will !!!

Very best wishes, Pauline

Thank you for all the advice and info about the insurance..... had not thought about that aspect at all :lol: :lol:

My husband has two weeks holiday booked from work towards the end of March so perhaps we can look at a week somewhere within a short flight away to get some much needed sunshine and warmth?

I will need to have my pain under control though and no appts looming on the horizon at the hospital...... food for thought and he and I will chat about it today.

Had a much better night although not totally without pain and feeling more comfortable this morning so 20 obviously kicking in although by day four would have expected a faster response perhaps?

Take care everyone....... being taken to see my lovely grandaughter today and cannot wait to see her..... they are just delightful at ten months aren't they?

Gillybee enjoy your two :D

Hi Fifites Girl

Yes I am sure a week in the sun will do you a lot of good What I am doing at the moment is going to places normally I have been before knowing it doesent matter if I dont see everything as I already have or if its somewheere new checking on forums to see what the walking is like We went to Rhodes last year and though Lindos is beautiful it is far too hilly so we went somewhere fairly close ,lots of good walks and visited Lindos a few times but never made it up the Acroppolis !! and felt great swam every day We are going back in September so we will see how I feel then

Six months before PMR attacked me for the 2nd time I walked to the top of Mount Vesuvius and walked all round Pompeii !! Also the month before my 2nd bout we went to Venice We had been before but I did find that time I was quite often feeling the need to do leg muscle stretches after I had sat for a while so that was a bit of a sign I think of things to come

So I would definately go away it is something to look forward to on these grey days but i would plan your other trip but not book it until you feel things are on an even keel

Enjoy your day with your granddaughter

Best wishes

Mrs G

Take the holiday Fiftiesgirl 8) ! I am a firm believer that holidays should be on prescription, they're my hobby :lol: You'll be fine - pack your tablets in your handbag, take extra just in case (we got stuck in Egypt for two days in November due to snow closing Gatwick!) and relax. Just the change will do you good along with some (hopefully) warmer weather. I haven't missed a holiday since being diagnosed although I have changed a couple of destinations as I thought they were a bit too arduous. I have always felt better in the warmer weather. I'm off to Spain on Tuesday and can't wait. Its an early start, so my morning Prednisolone will go in my handbag and be taken with a sandwich at the airport. I find it helps if I don't change the timing too much. Go for it :run: It does take time for PMR to settle down and I know just how awful it is, but a holiday will lift your spirits and ease your aches and pains. Have a good weekend.

Lizzie Ellen

50sgirl - why not try a trip within the EU for a start? By the end of March it isn't mega-warm but considerably better than Britain usually if you go fairly far south. The advantage of that is that your E111 card covers you for any medical treatment you may need and there is a company that does a \"top-up\" holiday insurance for the EU countries which is relatively relaxed about previous medical history because they know you are medically covered for the vast majority of any claim you might have by the E111. Google ehic plus - that should find it. Both my daughters have taken it out for their ski holiday which should happen next week here!

Two years ago when the PMR hit me like a ton of bricks after 5 years of just being sore arthriticky joints and stiffness that no-one would take seriously I had just had a transient global amnesia episode (I lost 5 hours altogether and had a goldfish memory of 3 min max). Despite having no signs except a raised BP on admission (CT clear, carotid scan clear, echcariograph clear), the consultant insisted it was a TIA (mini stroke) and referred me appropriately. Then came the next consultant who wouldn't listen to me :roll: and she decided I needed to be investigated for epilepsy :cry: . That meant I had to give up my driving licence until I was cleared. I couldn't walk more than a few 100yds without horrendous pain in my hip joints and feet because of the bursitis from the PMR, I dropped everything and was so depressed I just sat in the kitchen of the tiny house we had just moved to in our downsizing/retirement process and cried. Without my car I was trapped.

Luckily my husband had little concept of the level of pain I was in and suggested I came out here to our flat in the Dolomites. I decided - why not?? I found a cheap flight from Gatwick to Innsbruck, a bus from Darlington to London for £1, bus to the airport, stayed at the airport the night before and arrived in Innsbruck airport 4 hours late because of fog (we had an excursion to Munich airport until the sun came out!). I was alone with a suitcase and backpack. The journey was OK as I never had to walk far at any one time. The worst bit was Innsbruck to Bruneck by train as it involved 2 changes and finding the ticket dispenser at the Austrian border! :roll: I got here in rain which was snow up the mountain. I went to bed for 3 days whilst it rained and snowed and then caught the ski bus up to the slopes with just my skis and arranged a storage locker for the next month or so until my husband was coming out. Every morning I walked the 200 yds into the village, got the bus, picked up my lovely warm boots and skis and skied for 2 hours :lol: then I went home and did library research about what I might have online or worked (I'm a translator).

I know you're saying \"she's mad, I couldn't do that\" - but the incentive to get up the mountain in the sun was enough. I only usually do short runs so I have a rest on the chairlift inbetween runs. If I really am tired I don't ski - I go to a cafe. But the movement of skiing once I got going was enough to make the rest of the day more bearable. At that time I wasn't on steroids so I woke up, made a pot of tea and took a decent dose of pain-killers which took the edge off the pain and massaged ibuprofen gel into the most painful places so I could make an attempt at moving. By the time I got back at 12 o'clock-ish I could walk almost normally - the pain level improved as the day went on. I was here from the beginning of March until the end of April, my husband came out for a week as we'd intended and then had to return to Innsbruck for a meeting at the end of April so I stayed instead of going back with him. I used the buses for anything I couldn't do in the village (we have all the shops you might need there). We stocked up on eveything bulky before he went home with the car. It was such a good decision - I worked out what was wrong via my online research and I had a g

My posting will be very short in comparison !!

All this talk of sunshine is making me want to go to the sun !!

Our first trips away with me having PMR were all to Spain( my husband speaks Spanish quite well ) and so I printed out all the European Health card guidleines for Spain to go with me All the countries have their individual little quirks on there There are countries like Switzeland which I think only give you partial benefits

My travel insurers were fine with my PMR anyway but a friend whose husband has had some stents in his arteries fitted says they wont cover him for 6 months so trip to America is off as they had a friend ( no insurance who 10 years ago spent £50,000 on an air ambulance back from America !!!!!!

Best wishes

Mrs G

Eileen, I feel exhausted just reading your latest post but then I am a non traveller.

Fifties girl, although I'd never attempt what Eileen did I have certainly found that I benefit greatly from giving myself a good shove from behind.

Certainly I've had very low patches along the PMR route but never when I've attempted something my \"sensible\" self said was too much. So I'd say with Eileen and Lizziellen go for it. Man does not live by bread alone. Body, mind and spirit and if the first two are giving you trouble the boost to the third that achievement gives definitely does have a knock-on effect.

My two batches of marmalade, sorting out my greenhouses for the spring and cleaning the whole downstairs is my achievement in the last ten days. Not wildly exciting but to each his own and what a good thing we are not all alike!

Good luck with the plans. BettyE

fifties girl

There is a saying - \"If you want to enjoy yourself today do it today and to h**l with the consequences and smile if you pay for it tomorrow'.

My Mother used to add, \"you might not have to pay for it tomorrow, you might just end up pushing up the daisies, but at least you have enjoyed yourself\".

So just 'do it'.

Dubai with a direct flight from Newcastle.

Maldives?

Betty E: It's not so much a shove from behind I need as one from underneath to get me out of bed in the first place... :lol: :roll:

EileenH