Having started my PMR journey 10 years ago and now having experienced my 2nd flare up - having reduced to 2mgs eachtime - I feel I have a lot of experience but little knowledge or understanding of how PMR works it havoc. However I am once again trying to be positive !!!! although difficult at times - and I wanted to offer a few tips on self help. My background is an Occupational Therapist so I have spent many years offering advice on goal setting and aid provision to be independent- both which have been invaluable to the improvement of PMR symptoms. So I thought I'd share a couple of obvious things but which some people may not intially think about especially when the brain fog/pain fog has a hold. Forgive me if I am speaking to those who have already worked this out for themselves.
1. Wear loose fitting warm clothes but with a bit of colour or panache to brighten yourself up - I have two pairs of Supermarket trousers with elastic waist and loose legs that are fairly smart but are not my usual wardrobe type of trousers - but I can pull them on over my feet and pull up and down easily for toileting. I have also lived the last month in a cope of extra sized loose jumpers - warmth and easier over the head when those shoulder hurt so much. I top this off wih a scarf of varying colours ( probably as the mood dictates- but hopefully to reflect my need to feel brighter).
2 A metre square of fleece material has become a comfort blanket - it is light and easy enough to manage to get round my neck or shoulders whilst sitting or lying in bed - anything bigger i finds involves too much upper limb activity to get in position to help.
3. Decant steroid tablets into a small pot before going to bed and leave in easy access alongside a yogurt or something to eat - so that as soon as one rouses early morning one can take the food and steroids without having to try and get them out of the packets and also means you are aware enough when decanting the tablets to make sure you are taking the correct medication.
4 My final and best advice is to treat yourself ( if you have the finance - need about £500) to an inflatable bath cushion. I was lucky enough to be working when I had my first bout of PMR and borrowed aids from work to help with the bath. With my first flare up I spent me time at my mum's who had a bath cushion installed for her use, so I was able to share. This time - after the indignity of my husband having to lift me in and out of the bath, I blew some savings and purchased my own cushion - it is wonderful - the relief of the warm water over my back and shoulders as I lie in a lovely bath without the fear of getting stuck in the bath is unmeasurable. So if you are considering it - just go for it - I fully intend in a few weeks that it will go away in the bathroom cupboard to await my Mum coming on holiday or for when I get 90 and need more assistance. Meantime I know how much better I will feel after a warm bath.
Thanks to all who contribute on this forum - you have been amazing in your sharing of knowledge and support - Although I don't often contribute I always read the posts and have learnt so much from you all. I am avidly reading all about the introduction of methotrexate into your medication regimes as now with a second flare up and the fact that I am likely to be on steroids for a lot longer, it is being suggested that that is the way I need to go - I have asked at present to wait until i can reduce again to at least 5mgs and then discuss - when I hope I will have had time to research and be more painfree and clear minded to make an informed decision rather than introduce another toxic drug into the system now without knowing too much about it - any advice for the forum will be appreciated - maybe methotrexate is the way forward. I wait to see.
Good wishes to all - watch the daffodils - spring is round the corner. For those of us in the northern hemisphere that is!!
Thank you for your kind and helpful advice! I find I have cut and pasted a number of the most helpful posts into word documents that I then open and re-read based on the subject. Very, very helpful and yes, this forum is a God-send.
If you manage to get to 5mg on your own - then I doubt it is worth taking the mtx to be honest. Many doctors feel it is useful for the patients who struggle to reduce from double figures - once you are at 5mg you are at a low dose with relatively few side effects for most people. However - I also say it is worth trying perhaps - if you don't feel ill with it it may help. I take so many other things (not PMR related and not including a PPI or bisphosphonate) that the thought of another drug to count out and potential interactions just makes me cringe!
I too have had PMR for 13 years with a couple of major flares. I have been on all available forms of pred in that time and the best is indubitably Lodotra/Rayos - but unfortunately it is not yet available on the NHS in the UK as it is considered "too expensive". I have been down to below 5mg with it but struggled at 3.5mg and shortly afterwards had a flare sending me back to 15mg!
Now back down to 7mg - and after a VERY fruitful session with a rheumatologist this morning who did some manual myofascial release techniques I am expecting to be able to get lower. I'd got slightly stuck at 10mg - and my GP used a needling technique which was enough to get to 8mg. This doesn't work on the PMR itself but myofascial pain syndrome is commonly found alongside it. I was ecstatic when the rheumy this morning just got stuck in - it hurts at the time but is soooooo effective!
PS - forgot to add, I last had a bath 12 years ago! But even a bath cushion scares me to death - it is getting in and out of the bath itself I dislike! Thank god for walk-in showers!!!!
I bless the OT who encouraged me to use splints for my painful wrists ( OA, not part of the PMR which I no longer have. )
Like Eileen, I never bath but did treat myself to a shower that sort of massages and is a great comfort but have wondered about the bath cushions. The ones I've looked at have a battery so you enter the bath at ledge height and are lowered down and then raised to get out. The whole idea looks precarious to me rather as do stair lifts.
Going back to the bath cushion, it's the swinging my legs/feet from floor over the side into bath that I don't much fancy. Have I got completely the wrong idea?
Everyone is different - and I don't think I had much stiffness in my thighs but I did have awful claudication pain. But plaquenil won't do much in PMR - there is only one very poor study and it didn't seem to do much. Pred is the gold standard treatment for PMR - still.
Linda - not only that, my appointment was 40 mins long... And although I had to wait since November for this first appointment, I have 2 follow-up ones on 10th and 21st March! She's on holiday next week, half-term.
If you are interested in using as bathing cushion Betty you can see the use on You tube - although the models obviously do not have PMR !!!! I'd love to use it as easily as they do - but use it I do and it is wonderful - a life saver for me at the present.
All very good and lovely advice, thank you! I love that you encourage colour and panache! I couldn't live without lots of colour in everything, my clothes and throughout my house. I cannot wear black, it just brings my mood right down so I don't! I have a beautiful colourful blanket that is my ' Go to' when I need some extra comfort. Also if I could add a little helpful advice (hopefully), a heat pad is great, good to keep on the couch and it's small and easy to bring places! Thanks again gillb 💕
When I saw the rheumie last time, I felt guilty being in there 15mins....I think with all on the news now about the struggling NHS, it is making us feel like that.....
He said I`ll see you in 6 months, he must have seen my face, and then said well in 3 then.....
I am seeing my doctor in 3 weeks time, will discuss with her, but usually she leaves the decisions to him....
I am even struggling to find a physio that deals with myofascial, and as for needling well.....
Where are you Linda? Needling is hard to find in the UK I grant you - but south of Harrogate there are several people who do something called intramuscular stimulation which a friend of mine was sent for by her specialist at Addenbrookes (she has "lupus plus" not PMR but has a lot of back problems) and she thinks it is great. The practice she goes to for it is a sports physio. Sometimes you will find other complementary therapists who will do myofascial release.
I am in Norfolk....must admit a "sports physio" conjures up all sorts in my mind! I will even struggle to lie on the hard bed with out a pillow under my knees.... Trouble is when you ring these places....reception says something on the lines of....yes, we deal with all sorts....but do they! The lovely physio I saw last year gave me 4 sessions of acupunture, but was nervous about doing anything else, and even she said I needed an MRI to get to the bottom of the problem. I have now had that, and will discuss with my doctor the results, when I asked rheumie if he had the results (had MRI 3 weeks previous) his reply was no, and that I would have to chase it up myself, he hadn`t got the time!
Will have to look further and put in intramuscular stimulation as well.....
Love your rheumy's attitude - NOT! That's why he should have a secretary or a rheumy nurse you are assigned to. You do NOT tell the patient to chase up the MRI result in the UK. Though I have to say - I've been asked a similar question by a consultant "Have you got your EEG result?" We were not amused (OH was currently at consultant level in the NHS).
The lupus lady goes to someone near Newmarket. Otherwise, google "Nicky Snazell Clinic Norwich", "grosvenorphysionewmarket". It isn't cheap - though what is these days!
I found the Youtube demo for the Mangar version but it did not show the actual getting on and off which is what I reckon is the precarious bit. I don't see myself perched at right angles on the side of the bath which is quite high and then swinging my feet somehow into the parallel position necessary onto the cushion before lowering myself in. I think I'll stick with the shower.
Thanks for that Eileen, to be honest I don`t spend much at all these days, i just feel to ill to shop or have holidays....so I don`t mind if it helps my health.
When I rung my surgery to get MRI result sent to the rheumie, she hadn`t got it either....shethen told me to ring the MRI dept at N&N and pass on their fax so it would go through quicker! I said yes I`ll do that to make sure it gets done!! The hospital said yes it`s still here, to which I replied, having taken so long to send this through to rheumie and surgery, I may well have had a different outcome to what my appointment now resulted in (going back up to 15mg!).....I despair.....
