Careful what you do when feeling well

[Badgergirl]

Although we all know this I'm sure, including me, I thought I'd just share my lapse of sense with my fellow PMR sufferers as a reminder not to do things on good days to aggravate the muscles. Yesterday and the day before I was feeling better than I ever have done since my diagnosis in October, completely pain free and almost forgot I had PMR. Foolishly, feeling invincible, pulling with my right hand, I decided to move one of those heavy steel stacking trolleys out of the way so I could get to a supermarket shelf.

So, today, I am in so much pain in my right shoulder and can barely move my right arm as it is so stiff at the top. Been having to take paracetamol.

I hope I will remember in future not to do things like this!

Take care. Badgergirl

[PMRpro Ambassador]

Shout it from the rooftops Badgergirl! I sometimes think I should have the statement "take is easy" recorded for ease of use (not for me, she said smugly )

However, if it doesn't calm down soon get it checked out. Once you are on pred it doesn't do the tendons and ligaments much good and it is all too easy to damage them - and rotator cuff injury is not uncommon as a result.

[Badgergirl in reply to PMRpro]

I wish I had listened to you PMRpro. Well, I did but forgot! I'm starting to wonder now if I have a rotator cuff injury as the pain is getting worse. If no improvement tomorrow I'll get checked out.

Thanks again for your good advice - a rotator cuff injury hadn't occurred to me before reading your reply.

[trish29 in reply to PMRpro]

Hello PMRpro and Badgergirl I have had PMRfor 9 years and still trying to get answers but I haven't ever heard of rotator cuff injury and for the last few weeks I have had a very painful right arm and shoulder and put it down to my last pred decrease week which hasn't worked out very well. Before that I had a few good days and its so hard not to do things to catch up as I constantly say sorry for having PMR and feel guilty that i can't cope with the every day jobs that I used to do. I am considering Acupuncture to help my pain . Best wishes to you both and all PMR/GCAUK sufferers. Trish 29

[PMRpro Ambassador]

If you have the opportunity to try complementary therapies (let's face it, they aren't cheap are they) I (and one or two others) can really recommend Bowen therapy. A good, well qualified practitioner will tell you that if there is no initial improvement in 3 sessions it is unlikely it will help - but I had sessions every 6 months or so that kept me upright for the 5 years I had PMR before it was diagnosed. If you have something like frozen shoulder they can achieve a long lasting result but with something like PMR it is an on-going illness and you need "maintenance" therapy. I don't know HOW it works - but it does. And for me it was as good as a massage! Google it.

Trish - when you say your reduction didn't work out well, how do you reduce? Is there a problem there I wonder?

But "Before that I had a few good days and its so hard not to do things to catch up as I constantly say sorry for having PMR and feel guilty that i can't cope with the every day jobs that I used to do" - until you turn into a "precious princess" (to quote a friend with PMR) and put yourself first, second and third you will continue to struggle. Why are you apologising for having a chronic illness? It isn't your fault and you owe nothing to other people. The friend I mentioned was really struggling last spring and suddenly decided to be precious instead of fighting to do what she used to do. No housework, no painting and decorating, everything that aggravated the PMR was abandoned. Today she feels well and has reduced to 5mg after months and months at above 10mg and still loads of pain. Fighting and resenting PMR wastes a lot of energy you can use to get over it. When you are reducing you need to clear the decks for the first week or so and that helps your body adjust to the reduction - or you can end up suffering with steroid withdrawal. You must look after yourself - no one else will.

[trish29 in reply to PMRpro]

Hello PMRpro ..I could write a book of years of trying to get off of steroids . I am supposed to decrease half a mg a fortnight or half a mg a month to do it slower but my body just does not like it. I cannot go up any higher as my Rheumy may think me a failier I am on 10mg Amitriptilyne as well but it makes me drugged up and seems to have reversed my sleep pattern .. I cannot sleep at all well at night at the moment but drugged up in the mornings. In the past I have taken Methotrexate , Azathiaprine and Salfasalazine and got to 0.05mg steroid a few times but for one reason or another the medications upset me. I just have to keep trying. Trish 29

[polkadotcom in reply to trish29]

What time do you take amitriptyline? Are you taking it too late? It's best taken between 6 - 8pm in the evening NOT at bedtime. The earlier time is always recommended.

[trish29 in reply to polkadotcom]

Hello polkadotcom I take the Amitriptilyne between 5-30 -6-00pm . I was on it before about 2 years ago .I am very unfortunate with all these Medications as they either give me bad stomachs or migraines. This time around I thought I was better on it but I don't like being drugged up in the mornings . I will keep persevering for now and if I'm not able to take it I will let my GP or Rheumatologist know. Thanks trish29

[trish29 in reply to PMRpro]

Hello PMRpro once again.. Thank you for telling me about your friend .I am so pleased for her but its not that easy when you live with a Partner who understands to a certain degree what I am going through but it involves his life as well and even going for a rest for a couple of hours a day throws the routine but I can't get through the day without resting . I know I have to look after myself, its easier when the better weather comes and light evenings etc and hopefully we can sit outside . I knit and crochet ( hands permitting ) and do my puzzle books and read but I always feel guilty that I'm not doing the every day jobs. I pray I can walk again one day and get more exercise . I think this is just the winter Blues and I will just keep on trying. Thank you for listening. Trish. ( Pat )

[PMRpro Ambassador in reply to trish29]

I am married to a man who has no idea how to load and switch on the washing machine unless someone stands next to him, wouldn't know which end of the vacuum cleaner was which and can make a meal if he can grill bacon or put a meat pie in the oven with oven chips - which isn't an option since it is several hundred miles to the nearest shop that sells such luxuries so most meals have to be cooked from scratch and I cannot eat wheat anyway. He too lives for routine (he is on the better end of autistic spectrum) - but he has had to learn the hard way that there are things I CANNOT do without making myself ill. Three weeks in hospital as a result probably was an adequate indicator!

Dust is very patient, it will always wait. If the partner doesn't like it - there are two options: they can do it themselves or pay for a cleaner if they can afford it. After my experiences 2 years ago there is no way I'm risking THAT again. And since that was accepted I have steadily improved and been able to reduce the pred dose.

In marriage there was a promise to share in "sickness and in health". If you are not married but in a partnership - partnership means sharing, though possibly not equally if one is weaker in some way. A 2 hour rest doesn't need to stop a routine - it just delays the second half of the daily routine.

[trish29 in reply to PMRpro]

I agree with you PMRpro about the dust etc and I'm trying to be stronger on this point and hopefully next week I have a nice lady coming to start cleaning for me . When we met we got on straight away and I dont think that any job will be too much for her . I even find changing the Duvet covers too much for me now. In Defence of my Partner he does all the cooking at the moment and a lot of the hoovering so I have been lucky in that respect but he's nearly 74 and gets tired to so I think a cleaner will help that problem .Do you know what this Rotator Cuff problem is as I have never heard of it before. I told my partner about your reply to me and I've asked him to just bare with me on my bad days when I can be tearful and snappy.Friends try to understand and at 11-15pm last night a friend text me who suffers with another condition and said you shouldn't have PMR its supposed to Fizzle after 2 years why are you still taking steroids ? OH I give up ..I'm just off for a rest .. Thank you for your reply. trish29

[PMRpro Ambassador in reply to trish29]

Oh Trish - with friends like that no one needs enemies do they! I was discussing this with a specialist a few days ago. The medical literature says only about a quarter are over PMR and off pred in 2 years, 50% are on pred for more like 4-6 years and the rest are on it for much longer. He disputed the 2-year figure for a quarter and says it's far more. Whatever - there are a lot of people who are told "2 years" and are very disappointed to find after 2 or 3 years or more it is still there. And many of them find their way to the forums when they do research. We then have to explain - no, loads of people take far longer to get over it. Some people have to take pred for life because their adrenal glands don't work properly after a long time on pred - but that is replacement therapy like HRT was used so the dose is lower and the effects of the pred are less.

"Even duvet covers" - they have been my bete noir for years! It used to take me 4 or 5 attempts to change the bedding, one bit at a time. But we have single duvets - David had cancer 20 years ago, was permanently cold with the chemo and had the heating on in a very warm July and used a winter duvet! I drew the line at sharing and got 2 singles - one summerweight for me, one winterweight for him. And so it has stayed though now we both use summer ones as our flat here in Italy is so well insulated that the bedroom never falls below 16C even if it is minus 16C at night outside. Our neighbours heat so well that this winter we've hardly had the heating on!

This link is a very good explanation of rotator cuff injury. One of the symptoms is pain when trying to lift your arm above shoulder height so sometimes is mixed up with PMR. The main difference is that rotator cuff problems are usually on one side, PMR is both sides about equally. Taking pred can make us more prone to ligament and tendon injury so if you suddenly have shoulder pain after overdoing it is work asking the doctor.

patient.co.uk/health/Rotato...

[lyndyloo2 in reply to PMRpro]

This is SO true!!

As a TEN year veteran, I stop and think several times before using precious energy... It's all about the quality of my life (sounds selfish?)

Make life easier on yourself where you can.

[PMRpro Ambassador in reply to lyndyloo2]

I don't think it is selfish at all - if we overdo things and make ourselves ill we become even less use than we were before, both to ourselves and to our partners/family. I am also modern enough to see no reason at all why I should do things for someone else that leave me nothing left for myself. That is not what sharing life with someone else as equals is meant to be.

[lyndyloo2 in reply to PMRpro]

Absolutely agree with you PMRpro. I don't think I'm selfish either, but the perception of "others" family, (former) friends etc wasn't helped by the literature available when I was diagnosed. It seems it still isn't if the "two year rule..." is being bandied around.

One GP told me that I obviously didn't WANT to stop taking the steroids... Unbelievable!

Fortunately for me I was eventually referred to a very understanding rheumy who was able to help me.

With the benefit of hindsight there are lots of things I'd have done differently over the last 10 years, however, doing too much and getting stressed and being unhappy just makes it worse. Life is far too short.

In order to survive this PMR journey I've adapted and amongst other things stopped ironing, do the minimum of household tasks, don't lift or carry heavy stuff. ALL our Entertaining is done outside the house, we go out and someone else does the cleaning up! I rest when I want and need to..

If nothing else I've learned to say NO, politely, firmly and nicely when possible, but to say no and mean it. I know my limits now!

[trish29 in reply to lyndyloo2]

Hello lyndyloo2 reading yours and PMRpros replies gives food for thought . I have always put my family first and helping out with my lovely Grandchildren and when I moved in with my Partner I have always tried to pull my weight and help with the housework etc ,but since Christmas I haven't been able to catch up and it gets me downand exhausted. I have explained this to my new cleaner so I hope this situation will get better when she starts next week. I am 68 and have to reassess my everyday routine - pain allowing so as to drop down further on the steroids . Best Wishes. trish29

[Badgergirl in reply to PMRpro]

Thanks. I can't find a Bowen therapist near where I live and don't drive so have contacted a few to see if they are close to public transport.

[iforget]

Badger girl I can truly empathise...I am in a similar pain filled boat..we are having renovation works done at home an the place is filled with boxes...which are getting on my last nerve ...so stupidly I decided I could move a couple of light ones..Hah! definitely not the best idea I ever had.

Hope it al settles soon...for both of us!

[Badgergirl in reply to iforget]

Yes, we live and learn! I am stiff as a board today still. I do hope it settles for both of us. I am due a drop this weekend so I guess I'll have to put it on hold now. I'm sick of my big fat moon face and was looking forward to a drop for that reason - although to melt it will take time.

[PMRpro Ambassador]

Lyndyloo - Are we twins, separated at birth!!!!! Though I do iron himself's shirts most of the time. I didn't for a long time - I couldn't hold the iron safely - but then started doing a couple of shirts, then increased as my hands improved. I can do duvet covers now - since they are pure cotton they have to be ironed. Household tasks? What are they? And perhaps one of the best things I learnt when I lived in Germany was that having friends round doesn't mean you have to produce a Michelin star-standard 5-course meal. Raclette was my favoured home-made entertainment - I could spend a couple of days sitting and preparing the bits and then sit them on the sideboard and everyone selected their own stuff to make paddles of mini-pizza toppings. The hardest bit was explaining to my husband's brother how it worked (he was a bit dense - had a PhD). But a takeaway works as well as home cooked for a pleasant evening at home - and going out is even better if it is handy.

If anyone is interested there is a DVD available via the PMR and GCA UK northeast support site called "You are not alone" which offers a realistic load of information compiled by patients, physios and doctors amongst others aimed at a PMR patient's family and friends to explain what we are going through and the limitations it means for us.

But a very important lesson is that not one of us is indispensable - it may be a bit of a blow to your pride but in the long term you will bless the day you accepted it. If you don't do something either someone else will or they will learn to manage without or in a different way. It is a wonderful release.

Badgergirl - don't you DARE reduce yet!!!!!!!!!

[Badgergirl in reply to PMRpro]

No reduction, I promise! I was only going to go down by 0.5 but will wait. It seems so slow as I'm on 12.5 after 3 months on pred (started at 20 mg). The flu jab and Christmas stopped me reducing in December from 15 mg.

The You are Not Alone DVD sounds useful as friends and family don't really understand our limitations as we look fine. My husband is good about it (although I hate constantly asking him to do little things as well as big things like vacuuming) but others don't get it. I would like someone to compile something in leaflet format to hand to friends and family also.

[PMRpro Ambassador]

That was the idea of the DVD - it's better than pictures and words. We're working towards the leaflet bit as well.

After 4 years I was still at 10mg - though I grant I did have some hiccups. I've only got below that in the last 6 months or so and at a dead slow and stop rate of reduction. But it works - but it is accompanied by being pretty precious about what I do. I wish mine knew how to operate a vacuum cleaner! Bless him - he's suffered today as I had a paddy about idiot doctors - did you know that you don't have pain with PMR? No, me neither!

[Badgergirl in reply to PMRpro]

I am speechless PMRpro! PMR is one of the worst pain I have ever experienced. An optician told me only last week there is no pain with it, only muscle weakness (which is also wrong). people do need educating on this little researched disease.

I'm not surprised you had a paddy. It reminds me of when an ophthalmologist told me years ago that my uveitis wasn't a painful type when I felt as if someone had pushed a nail into my eye it was that bad!

[PMRpro Ambassador in reply to Badgergirl]

Recently I was talking to a couple of medical experts in PMR who are (praise the lord) aiming to do research amongst patients. We were talking about "important criteria" for want of a better word. They finally got the hang of "No it isn't MORNING stiffness - it's all day..." Then we got to the muscle pain/stiffness/weakness - and it was realised that what doctors mean by weakness and what we mean by weakness are two different things. Because I said I can't hold a cup - for example - or walk upstairs some of them thought that is weakness and blame the pred. What we mean is we "can't do things" isn't it - I can remember in the early days of PMR (with no pred) I would struggle to open something or change pillowcases and my hands and arms simply didn't work properly.

But I have found textbooks that say quite categorically that it is NOT weakness in PMR - it is limitation because of the stiffness or pain. So some people know But the misconcepts that so-called experts bandy around are unbelievable - I must document this week's idiocy and send to the research bunnies...

[Marcy47]

Been there, done that. I was doing my exercises for Sciatica as instructed by my physio, (who knows I have PMR), when I got a sharp pain in left groin and down front of left thigh!! Now having to do another exercise for pulled muscle there, and so it goes on. Hubby now has Cellulitis in ankle and is hobbling about trying to do things, while I am hobbling around as well. Don't have to do housework as the builders are doing an extension, so it would be a waste of time.

[Celebrant]

So helpful these posts. I live alone and the cat does not care if I ever dust.I have a cleaning lady come once a month. And ladies-if a man can operate a tv remote-he can operate a dishwasher, a washing machine, a vacuum. And remember-your husband might be delighted to take you out for dinner---open a can of soup-give him a sandwich and spend the money on a cleaner..