New to this - feeling terrified

Hi LindaAnn,

I can understand why you're worried and upset at the moment. My PMR came on quite suddenly and I started on 15mgs Prednisolone. I had almost instant relief and it felt like 100% but looking back I think I was in such a state when I started the Pred, any improvement was wonderful. For the next two weeks I went backwards a bit and had a few mornings when I just couldn't get out of bed again and was in a lot of pain. However, my Consultant told me to stick with it and I have to say that as the weeks went on I got better and better (about 70/75% I would estimate). I still had the odd day or two when things weren't so good, but generally speaking I wasn't too unhappy with my progress. I didn't put on any weight, in fact I lost weight for about three months mainly because I lost my appetite for food and my desire for alcohol! So although I think I'm in the minority with regards to weight gain it does mean that its not a guaranteed side effect of the steroids. As to the work aspect, I can't advise on that one as I don't work but I do know there are several people on this site who are working so hopefully they will be able to reassure you on that one. When it comes down to basics I just can't function at all without the steroids so from that aspect I'm very grateful that they are there to help. However I do understand your fears and I know that you will get lots of help on this site - I'm almost a 'newby' (finally diagnosed in September last year) but I have to say that life is starting to get back to normal (ish) and I'm already reducing the Prednisolone - on 10mgs now and seeing the Consultant on Wednesday so hoping that I will be able to continue coming off of them slowly. Take care and hope this helps just a bit. There will be lots more help coming your way I'm sure.

Regards Lizzie Ellen

Hi LindaAnn!

Don't panic! A 60% improvement is fairly miraculous even if you are not back to normal. I'm with your daughter on the fat and OK versus thin and in agony! I'm learning to accept the fat bit - but that came with the PMR-enforced inactivity not the steroids. I'd had PMR for more than 4 years before it was treated but I was never as bad as you except for a week or so last spring after another illness and it did get a bit better quite quickly even without any treatment. I could only move after 800mg of Ibuprofen and even then it hurt. I was finally treated with steroids (after prompting by me) 6 months later.

As LizzieEllen says - not everyone puts on weight. One recommendation for being on treatment with steroids I found in a medical textbook a few days ago was to be on a high protein, calorie restricted diet which helps with the possible muscle wasting and weight gain - you are probably on that if you've had such a good weight loss over the last 2 years. When I started the steroids I realised that the craving for carbs that I'd had every afternoon for months disappeared and I went back to being perfectly happy with 3 meals a day with no snacks inbetween. Try to be good!

I had the bicep pain - I couldn't hold a phone to my ear. The worst pain at the computer was actually in my forearms, like RSI in the tendons down the outside of your forearm from the elbow. That reduced steadily on the steroids.

If you've read much of this forum you'll have seen that one or two people had months of being bed-ridden before diagnosis and treatment, some still have a lot of pain on steroids, others have an almost normal life except for occasional blips. We are all different, I for example, ski 2 or 3 times a week, others garden (I still couldn't do that), someone else has horses. All of us on this forum have been there though - just remember that, if not much more sinks in to start with! Almost everyone says to go with the flow, whether it's up or down.

As much as anything else, I think it is an adjustment of your expectations that is required. So there's dust? It'll wait! Very patient, is dust! Do what you HAVE to do - that may be work to the exclusion of housework. Or vice versa. But don't try to rush back to work - the fatigue is as bad as the pain in some cases and if you overdo it on a day when you feel well, you'll find out the next day. You'll feel very down with the pain - try to stay positive. And I just know you're saying \"Easy for her to say that...\"

DLA - there is a post here on the forum somewhere about that. You'll get statutory sick pay even if you don't have a long period of sick pay cover from your employer - I'm sorry, I only know about entitlements in the NHS, which are pretty good. Scroll down the front page of this patient experience and look for a DLA title and the posts from MrsK about the northeast support group which has lots of information about different things. I remember someone saying (though it may not have been in this forum) that if you do apply for DLA it's all about how the forms are filled in, is almost certain to be turned down the first time and you should always try an appeal! Did you have it when you had the breast cancer?

The bad news is that the word \"cancer\" usually has a more productive effect - and PMR is a bit of a poor relation. MrsK and some other ladies have just been rewarded for their hard work by a charity being set up so there will be some publicity in future. At present though, no-one really knows why some people develop PMR in situations where others don't and, apart from steriods to relieve the symptoms, there is no cure s such. It may, or may not, disappear in a year or two, with or without the steroids. The good news, for you, is that you have a doctor who had heard of it - and that is a very good start on the road to recovery - and didn't just dismiss you as it being all in your head.

There are a few suggestions floating around in recent post

Thank you for replying - I will do my best to not panic!

I didn't claim DLA when I had Breast Cancer but I did claim on our mortgage and some of the payment protection things which helped then but I don't know if they would be as accomadating again! it is all going to depend if I am going to be able to work or not and that is still an unknown.

I have been ill recently - I had 2 bouts with a tooth abscess and had the tooth out, plus I had a cold - but I wouldn't say either seem to correlate specifically!

'going with the flow' is the thing I found very hard with the BC and when I went back to work in 2007, I thought I had done with long term sickness!

On the humourous side, I decided to have a soak in the bath - as I had sarted to feel a bit better - no-one in the house, mobile downstairs - and I had NO IDEA how to get out again! I did it but it wasn't easy! Never again - I will stick to showers for now

Thanks again

LindaAnn

Hello LindaAnn and welcome to the forum although I'm sorry to hear of the pain and worry that has brought you here. I'm sure you will start feeling so much better now that you have found this site and people with whom to share your fears and worries, and who will also give you a good laugh from time to time!

Like you, even 3 years into steroids, I still look at the bath and give it a wide berth - but I really love the shower and my hot water bottle.....any sort of heat is so comforting.

I think it would be a good idea for you to query the DLA situation. I am one of the people to whom Eileen referred as being bed-bound for several months prior to diagnosis and although I didn't claim DLA, it was offered to me by the Social Services who called in to provide a raised toilet seat etc. They also suggested a Blue Parking Badge and gave me the relevant forms. When I was a little more mobile and able to get out, I got the Badge and it has been invaluable. So perhaps you could complete the necessary forms and provide the proof such as GP's letter and copy of prescription and if you are successful that will be another worry off your mind.

You've obviously done wonderfully with your diet to have lost 2 stone previously so you probably don't need any advice. But as far as the inflammation from PMR is concerned, I have found several helpings of oily fish a week has helped with the relief of pain, ie sardines, mackerel, salmon, trout.

Good luck with the next lot of blood tests and do let us know how you get on.

MrsO

Thank you for making me laugh!!! I couldn't even get in and out of the bath in a standing position to get a shower - never mind sitting down IN the bath! How ever did you manage? My mind is boggling!!!!

Eileen

Hello Linda Ann Sorry to hear of another sufferer I have read of some people on the forum who seem to have a slowish reaction to the steroids so dont panic yet I have had PMR twice and each time have responded well to 20mg My Doctor did say with this 2nd bout that I wasnt to panic if I needed to take 30mg to get it under control as my bloods were higher As you are having blood tests again soon your Dr will be able to see what is happenning As for the weight I have put on weight but am planning an onslaught on it shortly with a high protein low carb diet as this I have is recommended when you are on steroids Im afraid I dont know anything about benefits but there is someone on here who offered to help anyone with advice if needed so I am sure you will be able to find her post If you have got through Breast cancer I am sure you will get through this but it is a question of pacing yourself as you dont normally look ill with this most people think you can carry on as normal but rest is very important I rember well having trouble with getting out of the bath wqith my first bout !! I think one of my worse moments was when I could hardly move and dropped my car keys and had to throw myself on the floor in the end to get them and climb back up hanging on to a chair so I could get to the Drs !! Warmth is very important and all the tips about not sitting too long without moving etc I hope you have an improvement soon

Hi LindaAnn and sorry to hear about your suffering.

The support and help offered on this site is truly wonderful (thanks to all ) and will help you get through this but unfortunately whilst we all share a common complaint we also have different experiences so only time will tell how yours will progress.

6 Months ago I was in intense pain and struggling to walk 10 yards but now I can walk 5 miles and do most things that I did before this started - be it at a reduced level. I can't do everything I want to, and the pain that is now mainly in my arms and shoulders still gets me down sometimes, but compared to where I was back then the improvement is pretty amazing. I am also getting through this without the long term use of steroids and currently am on no medication at all. I have also managed to keep working and I am glad I did because it has stopped me from sitting at home feeling sorry for myself (which I did enough of anyway).

So my message is one of hope in your darkest hour. It will take time but things will definitely improve and you will get back to some sort of normality in due course - because we all have.

Keep positive.

Bob

Hi Bob

So glad to hear that you are doing so well - that steroid injection obviously appears to be working for you then. Keep it up!

MrsO

Hallo Linda Ann

As you have seen already this forum is full of wonderfully responsive people so do stay in touch

I would just like to endorse all the advice about listening to yourself and not feeling obliged to keep going on bad days even though you may look a picture of health. Also about the effectiveness of heat but the more of the experiences you read the more you will realise hat not everything helps everyone so, again, listen to yourself.

Be you own psychologist. I went through a very low patch when I could barely be bothered to rouse myself to make any effort. It did not help that we had such a dire Winter. My first positive step was the day that I decided I could no longer live with my almost opaque oven door so I cleaned it. That souns a bit pathetic but the newly clean door did give me a lift and I now keep a mental list of undemanding jobs for bad days. It HAS helped me This was about three months ago. I am feeling much better now so can do moer exciting things like starting some seeds in the greenhouse!!

I am one of those currently getting by without steroids though in the past they have helped me immensely. This is my second bout of PMR and I have been lucky and not developed GCA so can afford to experiment a bit with the consent of my GP.

Did smile at your bath story. We had had a new bathroom and I was determined to try the new bath. Big mistake. Enjoyed the soak but had to turn onto my knees to get out. Did remember to pull out the plug first in case I slipped under. Rotten muscles. Brain cells not bad.

Good luck. Betty

So sorry that you've had to find us here - but you are in the right place.

I was not only terrified, but floundering, too.....8 years ago there was very little information anywhere about PMR and I subsequently found that most of what there was, was wrong.

It took me years to realise that it is a daily thing, today is different from yesterday and tomorrow will be different again unless I am lucky.

I haven't got any bath stories, but I well remember getting stuck on the bend in the stairs! Unable to move either up or down and make the necessary turn at the same time. I eventually got myself sitting down on the step and burst into tears........and then realised I could 'bum' it down!

Slow........but I got there in the end.

Nefret

Hi,

Bob, I'm really interested in how you've improved:[quote:6e67d0ce1e=\"Bob The Builder 2\"]

6 Months ago I was in intense pain and struggling to walk 10 yards but now I can walk 5 miles and do most things that I did before this started - be it at a reduced level. I can't do everything I want to, and the pain that is now mainly in my arms and shoulders still gets me down sometimes, but compared to where I was back then the improvement is pretty amazing. I am also getting through this without the long term use of steroids and currently am on no medication at all. I have also managed to keep working and I am glad I did because it has stopped me from sitting at home feeling sorry for myself (which I did enough of anyway).

Bob[/quote:6e67d0ce1e]

That's so good :D Can I ask how you've done it? I have followed your previous posts about your huge difficulties in getting diagnosed, but wonder how you've come from there to here?

I'm limping along on no steroids but ibuprofen and natural remedies.

Many thanks, Enid

Hi LindaAnn,

I had lots of similar worries to you, diag at 51 with this and working. I work for a large company and saw the Occupational Health doctor. One of the questions asked by my manager was whether the Disability Discrimination Act is relevant to pmr. The doctors advice, and I quote, was [i:c4cfb5b912]\"I do not doubt that the DDA is likely to apply. The Act requires individuals to be considered in the absence of treatment and pmr symptoms (ie mine) would be disabling without treatment and would be likely to continue for a significant period of time within the timescales defined by the Act\"[/i:c4cfb5b912]

This advice was sent in a medical report back to my line manager; it was then easy to arrange for breaks away from the computer, not for my arms but because my hips and back seized up so much, also to have a break at a time that suited me so I could take my steroids with food, and also to make her aware that I was very stressed!

Keeping working was very good for me as it lifted my mood. If neccessary print out a few details on pmr and give them to your manager so they have some idea of what it is. I didn't get instant relief with the steroids either - they can take a while - but it will come. Hang in there, good luck.