some questions about my mother in law

Bones, joints and muscles
1

we are very worried about my mother in law, who was diagnosed with PMR about a year and a half ago by her GP, who seems to be the one managing (??) the condition. She had been feeling very tired and achey for quite some time, and then got the dignosis and was put on steroids, which over time she has cut down to, I believe, 7.5mg a day (is that right??)

The problem is tht I dont believe that she has got the grip of the condition, and I am alo of the belief that the GP, for some reason or other, is not doing quite all that he could be.

She has had several bouts of terrible illness, mainly seem to be brought on by eating, and quite often these are high carb meals, which reading on your site are not the best. She then gets terrible stomach problems, and ends up in bed for a few days. She is a farmers wife, think she is about 72ish, and still tries to be very very active - walking dogs, gardening, going to art classes, running a holiday cottage (which involves cleaning and ironing), doing the accounts, keeping the house and cooking for a demanding husband (to whom her illness seems a bit of a nusience), As well as having a bit of asocial life too.

The last few months she has not been right at all. She says the doctor has checked her levels and she doesnt need to change the steroids, and I think she cant work out why she has been so rotten. she seems shakey, even her voice seems shaky, and its as if she is becoming old in front of my eyes. I am concerned that they have not given her any calcium, as she has already had 2 knee replacements, I am wondering if she is also anaemic. They have had her at the hospital and done scans and all the oscopies, and they didnt spot anything. The doctor just said she was eating too much, but then she never seems to tell him the whole story. she is so weak that she fell taking the builders their tea and has been in bed since friday, and when the doctor came she didnt even tell him that she had spent most of the previous week in bed too. She probably forgot as she seems to be getting muddled too.

The only time she has been good was when she went to stay with her daughter in Scotland for a few days, but the daughter has ME so only does a very little amount each day.

Today apparantly she decided that the answer was to move to scotland, as she now thinks the stress of money (the farm runs on a shoestring) is the problem. Personally I believe she needs to get down to the hospitals rheumatology department and get under an expert, and to learn that sh can only do a limited amount each day.

Does this sound familar to anyone. If I can find examples of how people are, even with steroids, I think she may understand better. I think that she thought steroids would make everything normal again.

thank you

2

I'd say the steroids may be causing serious stomach or duodenum problems such as an ulcer / s as that's along the lines of the kind of stomach problem that'll make you ill for a week. The poor thing I bet she's hardly eating because of it :?

She needs to see a Doctor soon smile

3

Hello Emma

I'm so sorry to hear about the suffering of your mother-in-law (how lucky she is to have such a caring daughter-in-law).

With regard to the stomach problems, has she been taking stomach protection tablets alongside the steroids, ie Omnaprazole or Lanaprazole? If she can eat live yoghurt then whatever the stomach problem is that would certainly help, especially if taken immediately before the steroids.

You mention you are concerned that she may need calcium - she should have been prescribed some sort of calcium or bone protection medication when started on steroids as they are known to be a high risk factor for developing osterporosis. If she hasn't had a DEXA scan then she should arrange this with her GP, especially as she has already had knee replacements.

It certainly sounds as though she is doing far too much whilst suffering from PMR - everyone on here will tell you how important it is to pace oneself, for instance if she has a hectic day on one day then it should be a restful day the next. Any kind of stress, whether physical or emotional can aggravate PMR.

Has she been checked for a urine infection as I know that can make people feel disorientated, shaky and ill?

I hope some of this helps but I feel it is imperative that your mother-in- law is properly checked out either by a different GP or a rheumatologist because she may be suffering needlessly just because of a simple deficiency of some sort or another.

Very best wishes.

MrsO

4

Hello Emma, what a lovely daughter- in- law you sound.

No wonder you have concerns about your mother-in-laws 'management' by her GP of this condition. Do you know if she was put on any other medication to protect her bones/stomach at the same time as starting the steroids ? If she wasn't, then her GP certainly wasn't doing their job properly.

You are right to think that she should be referred to a rheumatologist, and asap I should think.

It seems strange that if she has been checked at a hospital with scans etc, that no-one there has got her a referral to the rheumy dept..

How on earth she has managed to do everyday things, let alone the number of chores you have told us about is beyond me, I'm sure I won't be the only one on here thinking that.

Perhaps you could suggest that you accompany her on her next visit to the GP, I would make one straight away,and go armed with some info' to help her case. Is there another GP she could see if it is a group practice ?

Do come back and let us know how things are soon.

Wishing you luck, and best wishes to your mum-in-law,

DD

5

Emma

Visit www.pmr-gca-northeast.org.uk

Wealth of information, diagnosis, treatment etc on that site.

However, it looks to me, from what you have written, that your Mother-in-Law is suffering from stress related conditions. This can manifest itself in many ways and sometimes particularly in stomach upsets.

Stress is not a good thing for anyone with PMR and it sounds to me like your Mother-in-Law is under quite a bit of stress.

In fact some people on this site will say they are sure that stress caused their PMR. But as there is no known cause or cure for PMR this is purely anecdotal.

When she was in Scotland all the stress factors where removed and she felt better from what you are saying.

Your Mother-in-Law needs to change her lifestyle, PMR whilst not a life-threatening illness, does change your quality of life and you are not able to do all the things you did before. You have to adjust to the change and getting your head around it all can take some time.

You do not say where you are located, but there are Support Groups in some parts of the UK.

Maybe it would be better for your Mother-in-Law to have about six months in Scotland and see how she fares.

6

Hi Emma,

Welcome! Not that anyone here likes to meet new people this way!

How many doctors are there in the practice? Do you live near your MIL? If I were in your position I would arrange to see the GP yourself even if you are not a member of her practice. Whilst the GP cannot discuss your MIL with you in terms of her medical notes/history etc s/he can listen to your concerns and - if they are any good at all - reexamine your MIL's case. Write down everything before you go so you don't forget anything and don't be put off. It is often a good idea to get an appointment at the end of a surgery, and/or ask for a double appointment - then you are less likely to be rushed out of the door. Seeing a different dr may mean the problem is approached without preconceptions based on the original diagnosis. I certainly got a lot of help from a young Spanish trainee in a practice when my husband had cancer and I was ignored by the men in the practice as \"just the wife - what else do you expect other than to feel tired?\".

It's difficult to know for certain without knowing a bit more but I would be inclined to suspect that there is more to this than just PMR. The response to high carbohydrate meals your MIL has shown is similar to someone I know who was finally diagnosed with coeliac disease - he was fine with smaller amounts of carbohydrate at a time but had a few episodes like those you described after days where he'd eaten loads of bread and other carbs. Don't misunderstand me - I'm NOT suggesting that as a diagnosis for her but I am suggesting that there is more to this than her PMR and it needs investigating as a separate thing and not written off as part of the PMR.

I hate to have to say it, but there is a tendency in GB to write off the over-70s with \"it's just old age\" and I am sure there are people suffering unnecessarily as a result. One would hope it's nothing really serious or nasty - but there is always the possibility that this is something which should be ringing alarm bells and needing further investigation.

I agree with Dr Spock and MrsO that she needs to see another dr soon, it is possible it's the steroids and a gut problem but it is also possible there is something else and your description of her rapid aging and confusion means you may need to indulge in some patient advocacy especially if she's like so many of her age and only tells a quarter of the story! I went through something similar with my MIL a long time ago - her GP was treating her for heart problems instead of something as simple as severe anaemia! Her haemoglobin was in its boots (6, when the normal is about 12 or 13) but he'd decided, without proper investigations, it was her heart, her eyelids were pink so she couldn't be anaemic, he said!

If she's just been in bed for the best part of a week something needs to be done ASAP and not just written off as \"old age\". Her husband's reaction may (I'm being charitable!) be denial as he can't deal with illness - on the other hand it may just be something else! I've just read your post again - some of us are able to do much more than others once we are on steroids and I suspect I am fairly active. During the winter I ski several times a week - but doing anything in the house leaves me feeling as if I have been run over by a bus (that might be because I hate housework, of course ;-) ) and I can't walk long distances. Others here do loads of gardening which I couldn't. Everyone reacts differently to PMR and I suspect that is part of a wide continuum of syndromes that just sort of merge into one another. The steroids just reduce the inflammation and make a more normal life possible - they don't cure it, just control it and it is, of course, quite possible that this has never been explained to your MIL (and pa-in-law) or that she has to do her part by pacing herself and not being overenthusiastic.

So good luck - keep us informed, we may not know you personally but

7

thank you so much for all your support.

I spoke to her this morning, and (as usual) I doidnt have the full picture about her treatment. She HAS got calcium and another drug which she wasnt too sure about. And they are checking her glucose levels (though hardly regularly - certainly ot any GT test - my daughter has cystic fibrosis, and Ive seen the glucose tests which we need to do for her annually)

I know that they hae discounted coeliac (not sure how) but that doesnt mean that its not an irritant.

Typically she has got up today and didnt go to the doctor, although the berating I gave her may send her there later today. She likes this particular doctor, but often its more a personal thing as he has been known to her family for many years, and may not be that he is that good! I think he shoots with her husband. I also told my FIL that she mustnt do much.

I think she might agree to apply for attendance allowance, and also pension credits - enough money to live on will probably reduce the stress a great deal. I cant see that a move to scotland would help - she would chose some draft nook miles from anywhere with woodburning fires. Besides which, the relationship with her daughter is slightly volcanic - this is the first time that they havent wanted to kill each other after 3 days!

My other half suspects its more a desire to absolve herself of the responsibility of running the farm (FIL refuses to do the accounts - hasnt looked at them for years) as my OH is in the procss of taking over the management of the farm, we are looking at ways that we may take over the accounts, and so she can properly retire and take care of herself.

Personally I think she does too much, and has too much expected of her. I think she thought the steroids would mean she could just carry on as before, rather than realise that it masks the pain, but the problem is still there. I am going to make her up some recuperative medicine (Im a medical herbalist) and take it over to her today.