Ouch

Hello Maggie Ann and welcome to the forum although I'm sorry to hear of yet another sufferer. It's good you've had quite a good reduction in your pain since starting the steroids. As for the shoes and socks, that will get easier as the inflammation comes down, otherwise there is a contraption you can get for pulling your socks on. As for the grabber, I've just replied re that to the wrong person (little grey cells not working!) but I couldn't have done without my grabber when at my worst and seemed to be an absolute butter fingers dropping everything. Best wishes for a speedy recovery.

MrsO

Hi Maggie Ann, Sorry to hear about your experiences - I guess I was luckier that my PMR started more gradually, not this awful - and scary - can't get out of bed business. We all seem to have slightly different experiences but this site does help an awful lot, often in practical things. You do sound lucky with your friends and neighbours too. I know what you mean about the bath! I had a horrible panic once that I wouldn't be able to get out but I have found the warm water so helpful that I manage now, I had a grab rail put in, bought one of those rubber nonslip mats and get up on my knees first - if that makes sense. One does get much better at learning different ways of doing things or not doing them at all in some cases! Though I had a sad experience in my bath the other day, having given up worrying about cobwebs. I suddenly saw this long dangly cobweb hanging down right in my face - you should have seen me trying to negotiate a long 6' cobweb brush to try and get the darn thing down. My shouders are not the best part of me anyway and I kept missing!

Keep in touch, Green granny

Hi MaggieAnn & others,

After my outburst the other day when I really was very scared, things have calmed down a lot.

I have been on the steriods for a week now and go back to the GP today and since about Tuesday (day 6 of taking them) there has been a really marked improvement in the stiffness and pain during the day - not 100% yet but so different. I am still waking up stiff and sore but nothing like before and that gets easier gradually during the day. I feel flaked though even though I am sleeping better and haven't really done very much!

Yesterday I drove myself for my blood test and went out for a walk unaided - despite a case of jelly knees!

Still not ventured another bath though (I have never liked showers very much either!)

Will keep you posted, thanks for the support

LindaAnn

Hello again to everyone & thankyou for responding to my first posting.I am also new to using a lap top so it took me a long time to pluck up courage to register & even longer to get it all worked out.I am so glad that I made the effort as I already feel better for sharing things.Today is cold & damp here & I am not at my best.I suppose the weather may have some bearing on the stiffness even though I keep warm.My garden really needed last nights rain but tiny weeds were already showing this morning so I took a chance & spent 15mins with the hoe.I shall proobably pay for it tomorrow! It is so good that Linda is already feeling cheered up.Long may it last.Thankyou for the various tips & good ideas.Each time I log on( Is that the right term?) I am afraid that I am not going to find the right place again so if I disappear it is simply that I still have a lot to learn about computers! Cheers Maggie.

I \"bookmark\" the PatientUK site so I can find it quickly, have you got an equivalent on your laptop? I do use a MacBook (Apple) which is supposed to be very user friendly. BUT although I have used a computer for years, since I have had PMR and during this last bad winter it has been an absolute life saver! I use it for shopping, watching TV programmes, Googling, getting news, e-mailing and contacting all the lovely people on this site - probably other stuff too I can't remember. Would be nice if it could get that maddening cobweb down from the bathroom ceiling tho\" (and do some other housework too).I 've been pretty achy too today with the damp. Green granny

Hello again to all.Sorry to moan but it has been a bad week.I have now been on the steroids for just over a fortnight & the miracle has not happened.Things did seem slightly better for a few days but no improvement at all since.Mornings are awful.If I am lucky I thaw out later in the day so I must be thankful for that! The latest blood test again gave very confusing results & my poor GP is a bit baffled so next stop is the rheumatologist.Can't wait.....will keep you posted. MaggieA.

Hi Maggie Ann,

So sorry you are not doing as well as you might. I notice that you are on 15mg and that may be a little low. I'm not the expert but 20mg at the start is more usual I believe and others (I am among them) began with more for at least a while. Perhaps some of the others on this site can weigh in on this topic.

Jill

Hi

Just thought I would join in as I have had a day asleep and am trying to keep awake till tomorrow (one minute past midnight). So pop in and see what's new.Nosey I am.

I have a 'grabber', a stocking putter oner (is that a word!!!!!!)

From Adult Care Services, two zimmer frames (one upstairs and one downstairs), and also they are raising my new settee (well it one year old so perhaps nearly new) as I no longer can get up off it.

I also had a 'perching' stool for the kitchen. Used it for ages, till the back problem arose - I hasten to add, not cause by the percher.

If it comes when you really cannot get into the bath, contact ACS, they can probably fit a bath lift.

I posted on a separate email about Baths, showers et al

Scroll down and take a look.

not :sleepy: changed my name tonight

Hi Mrs K :sleepy:

I do hope you've had a more awake day today especially as we're going to lose an hour tonight! It's amazing how this PMR and/or the steroids cause these sudden bouts of exhaustion - I could literally fall asleep every time I sit down sometimes and usually when I'm watching my favourite programmes!

Take care.

MrsO

Hi!

Well I was feeling better! I have been on the steriods (at 20mg) for 2 weeeks now and things have not improved more than that 80%, which I appreciate is such an improvement on before but I am now getting to the stage where I want more.

I still suffer with pain in the mornings in my knees and the tops of my arms making easy movement difficult until later on in the day. I have asked the doc to sign me off at work for another week. I still get days too when I do nothing but sleep!

I am doing stretching exercises every morning and making sure I go for a walk every day - walking myself \"through\" any knee pain. I tried going back to my exercise class (doc said to give it a try) but couldn't get very far before it made me totally exhausted!

I really do want to get back to work, but am I ever going to feel better than this, and will I have to just try to accomodate and work round having this pain as part of my day??

Doc wants to try reducing the steriods in about 8 weeks, which will presumably make me feel worse again?

LindaAnn

Hi LindaAnn,

I've just been having a quick look at my records (yes, I'm a bit nerdy, I keep a record of what dose Pred I'm on and how I feel each day!). I think you're doing really well after being on Pred for only two weeks. I started on 15mgs in October and started to reduce in January, coming down very slowly. And no, I didn't feel any worse when I started coming off of the Pred but I think I would have done if I'd tried to do it any earlier. I'm afraid this isn't a 'quick fix' but it is a fix eventually. After nearly 6 months I'm feeling so much better - but don't get me wrong, I haven't felt ill throughout that 6 months. Ups and downs (as anyone on this site will tell you). What I have found though is if I try to push myself I go backwards! I know what you mean about total exhaustion. It used to hit me from nowhere - and I just wanted to curl up and sleep. That's much improved now as the steroid dose comes down. I'm on 10mg now, reducing by just 1 mg every 7 weeks but seems to be working for me. My attempts to return to the gym are well documented on this site and joy of joys, I managed to do three sessions last week. You will get there, but I think its going to take a bit longer than you first thought. The two words that have governed my life of late, patience and sensible!! Neither things I'm known for, but two things that have actually helped me deal with this. I do hope you find a way of managing your life around PMR that works for you. I think you really are doing well and will enjoy a gradual improvement if you don't try to hurry things too much (boring I know!!). All the very best.

Lizzie Ellen

Hi LindaAnn,

I think all of us here will emphasise that the watchword HAS to be PATIENCE! Like anything you have to learn to do it will take time to hear what your body is saying to you and learn the coping mechanism that works best for you. I steadfastly ignored housework - the most inconveniencing part of my PMR was the pain in my hands and feet and using a vacuum cleaner was the end of the world. Any procedure that needed dexterity - apart from typing - made me feel so clumsy I just sat and cried. And sitting typing (I'm a translator) made my back hurt. The unbelievable sensation of exhaustion also made me cry sometimes. BUT, I went to the gym every day Monday to Friday to do an aqua aerobics class that meant I was out of the house, with other people and distracted. It also helped mobilise the joints. Everything was arranged so I walked the minimum distance to do anything as my hip joints and feet were so sore - and I didn't have a disabled badge. Another example, pre-prepared veggies - frozen or fresh - meant less sore hands.

You have to decide what is the most important thing FOR YOU. If it is going to work - leave the housework. Get your shopping on line, get your friends/family to help - though that said, my husband was about as much use as a chocolate fireguard!!!

Eventually, you get used to the things you can't do and find other things you can do. In some ways it's a bereavement - you have lost your way of life and must readjust - but it will pass, you WILL get better. And you have to hold onto that - it may take a while, but PMR is not a terminal illness. That is a big positive, there will be ups and downs but no full stop!

Keep your pecker up and best wishes,

EileenH