A question - when did you get PMR?

Bones, joints and muscles
1

Hi all!

I know it sounds a silly question but I wondered if any of you would like to provide me with some anecdotal information!

1. When did your PMR first appear - i.e. what time of year? Summer, winter?

2. How many of you feel noticeably better once the sun starts to shine and is it just once the weather is more cheerful or once you actually start to go outside? When you go out do you ALWAYS use a sunscreen - or do you not bother for short trips outside, e.g. to go to the shops.

3. Those of you who \"go south\" - do you notice a difference in how you feel with the PMR after a week or so?

4. How often do you eat oily fish (salmon, mackerel, tuna, sardines)? If you eat a lot, does your PMR feel better?

That'll do for now! smile

cheers, Eileen

2

Hi Eileen - I love surveys!!!

1) Started in August on my way back from 6 weeks in Spain.

2) Always feel better in the sunshine. Nope, don't use sunscreen unless I'm on the beach (always walk on the shady side of the street!)

3) Always feel better in Spain in the summer. Feel good in the winter in Spain but again, only when the sun shines.

4) Eat oily fish once a week in UK and 3/4 times a week in Spain.

5) Always feel better after I've eaten chocolate :choc: (Oh. Didn't you ask that one!!!)

Regards

Lizzie Ellen

PS: Beautiful weather here in Basingstoke so feeling very good today.....

3

Hi, Eileen...I love surveys also. My PMR started very suddenly on Christmas Eve, 2009, in the midst of a stressful period. It was \"happy stress,\" but stress nevertheless. And it was more than Christmas stress. I live in Florida, USA, so cold weather did not seem to be a factor (though this was one of our colder winters). It is very hot here now, and I've unfortunately had a relapse, so the temp is probably not relevant for me. I use sunscreen only when going to the beach or to Disney World. I take fish oil supplements and have just recently increased the dosage from 1000 mg to 2000 mg - and may go up to 3000 if I notice any improvement. I need the supplements, since I rarely eat the appropriate fishes. Though you did not ask this, I'm currently on 12.5 mg of Prednisone and take Darvocet twice a day to help me manage the pain. Hope you're having a lovely summer day!

4

[quote:874829e97c=\"EileenH\"]

1. When did your PMR first appear - i.e. what time of year? Summer, winter?

My PMR started in December, 2009... but as I live in Florida, USA, the temp is still pretty warm (50 to 70 F).

2. How many of you feel noticeably better once the sun starts to shine and is it just once the weather is more cheerful or once you actually start to go outside? When you go out do you ALWAYS use a sunscreen - or do you not bother for short trips outside, e.g. to go to the shops.

I do feel better after I've been out in the sun for a bit. I don't wear sunscreen if I'm going out briefly, but do for prolonged periods (i.e. doing yard work, going to beach). I try to get about 15 mins of direct sun each day to get some vitamin D - which helps ward off bone loss risk.

3. Those of you who \"go south\" - do you notice a difference in how you feel with the PMR after a week or so?

N/A

4. How often do you eat oily fish (salmon, mackerel, tuna, sardines)? If you eat a lot, does your PMR feel better?

I don't care for oily fish. I love canned tuna... but that probably doesn't count. I know oily fish is good for you, but yuck! :yuk:

5

:D In hindsight, my PMR started in the winter of 2007. I made a rare visit to my then GP but got nowhere, \"It's old age and there's no cure.\" After moving house and signing on with a new practise, my present GP suspected, correctly, what the matter was. I was at my worst last summer and that was what forced my very first visit to my new GP.

I eat mostly fish; oily fish four times a week, white fish twice and white meat on a Sunday. I also take a vitaming D supplement called Paradox.

Before I was receiving treatment, though, mentally, I felt brighter on sunny days I still suffered aches and stiffness. As I am part Spanish, I am very dark haired with olive skin so only wear sunscreen when being in the sun for more that half an hour.

6

1. I first noticed the symptoms of PMR in summer 1995, but it was a particularly stressful summer. (This is borne out by my medical records)

2. Always much better if the sun is shining, never use sunscreen as can't stand anything greasy or sticky on me, rarely sit in sun.

3. N/A - I'm as south as I am likely to get.

4. I've always eaten a lot of oily fish, so haven't noticed much change.

Nefret

7

First episode appeared Sept. 1999 Second Feb 2008 First coincided with a period of what, at the time, did not seem particularly stressful but on later consideration perhaps was more so than I thought. My mother was in her nineties, living very independently with only wanting help to change her duvet cover! Freezer was well stocked with home-made( by her ) soup, cakes, etc. and we provided veg. from the garden, took the dog out and were taxi service when needed. We only lived 2 miles away so it did not seem any big deal. We were retired so time not a problem. We counted ourselves lucky that there were no dire problems. She died 5 days after a stroke in Feb 2001 and, after the initial sadness again counted our ( and her ) blessings. By this time My Pred had reduced from 30mgs to 5mgs and and very gradually tapered to nil by Aug.2002

Second episode began in Feb. 2008 and coincided with plans to sell our house and move somewhere \"more suitable\". This WAS a quite stressful time but, again, I only made any possible connection in retrospect. The sale and new build did not work out thanks to credit crunch etc. and, instead, we adapted our present home and love it. But we DID have the builders with us on and off for a year. Stress??Who knows?

Felt pretty low in this last dire Winter and very glad to see the sun but don't know whether there is any definite connection. Don't go on holiday we love it here and our lifestyle more or less prohibited it so no going South but we do spend a great deal of time outdoors, Summer and Winter. No sun screen.

Oily fish... sardines once a week, white fish once or twice. Cod liver oil, 1000 mg. daily.

Hope it stays warm on your mountain ( or do you want some snow for skiing ?). Looking forward to the results of your survey.

8

Just as an aside - stress seems to be cropping up a lot in this post and my PMR started after a very, very stressful two years. Just as the stress was subsiding so the PMR raised its ugly head.

Lizzie Ellen

9

Hello

My first bout was in 2002 I think it came on ghradually during the early summer could no longer ( spring ) !!!! on to my horse if I sat down for a long time I felt stiff and aches around pelvis and shoulders I was going to the gym and exercise classes a lot no real stress It started to escalate in later summer and I read about PMR by accident of picking up wrong mag so wasnt surprised when it was the first thing Dr mentioned Didnt get on to steroids till early Oct because of low blood results but then I was textbook off steroids in 2 years

I was then fine until 2008 I had a really bad flu throat infection and was given antibiotics by walk in centre Dr at the beginning of the year This infection came back in March I had been on ( climbed Vesuvius walked Pompeii) !! I then felt the old pains in the shoulders Dr did blood tests even gave me prescription for steroids in case I got desperate before I saw her ( she only works 3 days a week ) By the time I went back all pain gone bloods at 2 n 2 False alarm !!

Worked incredibly hard physically that summer ( for my advanced years of 60 then ) also one more throat infection felt a bit achy and was taking lots of painkillers Waited till after visit to Venice in Sept for my husbands 60th and went back to Dr Bloods higher then first bout and she said you should have come earlier !! But I didnt have the same terrible pain I had with my first bout Not sure about stress I look after my husbands brother (who has learning difficulties ) so he can live independently and he is very very stressful to deal with I have noticed since I have been on the steroids I dont deal with stress so well I got myself in to a real tizz over the snowy weather in Jan when we had trouble getting to our horses but I could have in an emergency got someone else to feed them and that triggered a very major flare up and I was very depressed for some time

I have felt much better since the sunny weather has come I do feel better on holiday in the sun I think part of it is because I do really good walks every day

I havent noticed any difference in my tolerance to the sun I always smother myself in cream and because I go abroad quite often I dont have a probelm I wouldnt use suncream all the time only if I was planning to sit out in it or walk a lot in it and I think most facecreams have some factor in them now I really think my skin is thinner as I only have to catch it on something and I will end up with a small cut and of course bruises !!

I eat a lot of fish on holiday ( hate cooking it ) I do eat it at home at least once a week if not more and I take high doseage Cod Liver Oil and Omega 3

Hope this is of interest to you

Mrs G

10

PS ( after all that ) !!

Forgot a nurse I know (who was married to a Consultant and her father had it so she had an interest ) was told by a Rheumatologist that the younger people who got it ( I was 54 ) and been very active people I was horse riding the Gym Aerobics and very busy social life so I followed that pattern

Mrs G

11

Hello Eileen

This is an intriguing post from you!

1. :xmastree: Christmas 2006!

2. :cool: I do feel better when it's warmer and the sun is shining, partly I'm sure because I then feel less stiff than in winter.

Although I am very fair-skinned and fair-haired, I do not use sunscreen unless I know that I am going to be out in hot sun for a long time and with fewer clothes - I was told by a rheumatologist some years ago to go out in the sun for 20 minutes daily without sunscreen.

3. :sorry: I'm sorry not to be able to contribute anything here as I haven't been far south for some years .

4. :shark: I eat oily fish such as mackerel, trout, salmon and sardines (including bones with the latter - good for boosting the density of our bones!) several times a week, and do notice PMR symptoms more if I miss.

Do hope this is helpful, Eileen, and good luck with your research!

MrsO

12

Hi Eileen, I haven't added anything on here for a long time, but have been keeping up with everyone's experiences.

In answer to your questions,

1. Winter, my PMR started shortly after a minor procedure that didn't go according to plan. My cardiologist was trying to put a camera down my throat to look at the back of my heart, and everything went into a spasm and he was unable to carry on. Only the 2nd person that he had come across where this happened.

2. Well, the recent sunshine seems to be helping, as this week I have gone down to 3.5 mg of Prednisolone. (Hope I'm not tempting fate here !)

I don't use sunscreen as I tend not to stay out in it for long, and until recently couldn't walk far.

3. Going South for me means going 'home' to Devon, not often enough !

4. As for oily fish, I'm with RickF on this one, YUK, and I don't like Tuna either.

Will catch up with you all soon, when all my home improvements have been finished. Two new bathrooms done, 14 new internal doors hung, and a new kitchen and utility room about to be fitted.

Hope everyone is as well as can be expected, off to see my 8yr old grandaughter now, who has just had her arm put back together with two pins and a plaster cast, after trying to do a handstand on a trampoline !

I thought this PMR was a good excuse not to join in those sort of games, now I won't have to find one, as she has well and truly put herself and her sister off the blasted thing !!

Love to all, DD

13

Hi Eileen

1. had a stressful life for the past 10 years, hubby with parkinson''s, working in a forensic phychiatric hospital. Had notices achs and pains for about 3 years then I had a knee op and my Dad died 2 days later. The week after his funeral bang it hit me and I couldn't move. February and I was on annual leave at the time.

2. Always feel better in the sun and heat of the sun wear sun screen in the garden only factor 2 though

3. live in the east of England and don't travel much due to hubby

4. hate fish

hope that helps

Koukla

14

Hi all,

My PMR symptoms started in November 2009, shortly after Oesophagitis which started in August 2009 - I stiill suspect the 2 are connected. I was on Omeprazole for that (since about Sep 2009).

I had had a massive amount of stress for a number of years due to mental health probs in the family etc..

Dont know about going South - I haven't had symptoms on the whole since starting pred. and haven't been south apart from a week in April to France - was fine but had been fine before too.

We try to eat oily fish once a week - more when I think about it and am being good! When we are in France on holiday, we tend to eat more of it.

While we are doing confessions, ....I eat probably too much choc and drink too much wine!

All the best to you all.

Beev

15

Started \"not feeling good all the time\" after a really tough bike ride called the B to B June of 2008. severe shoulder pains started November 2008 finally diagnozed February 2009.

Born in London, live in New England. We usually go South once a year Cruise in the Carribean. Feel good in the sun, getting to hate the winter [too much snow] considering retirement in Florida. Use sun screen at the beach or pool

Hate oily fish. Love Chocolate and ice cream

Down to 2 1/2mg pred. started at 25mg.

16

Hi Eileen,

1.....I was diagnosed on the 21st April 2010....pains started in March 2010 Spring.

2.....The sun is nice and I am sure it does make you feel good,I don't like the muggy Nights that it brings though sad , I do use sunscreen when going out in the sun, I like the Winter too.

3..... Do you mean the South of England? I have been to Saffffffend many times smile and I Iive in the South of England.

4. I am a Vegetarian.

:D At Lizzie and chocolate cake..... well why not the saying is a little bit of anything is fine and chocolate cake is so good.

Annie smile