Where to next? - dealing with pain
Posted , 5 users are following.
It is perhaps 18 months since I last posted on this forum, but I follow all the threads with interest and derive a lot of comfort and many smiles too from the incredibly caring people who post regularly. 69y, previously very fit and active, diagnosed 2 ys ago, I started on 20mg reducing to current 3.5 mg currently, following a version of Ragnars regime throughout the taper. Stressful family crisis sent blood markers up a little last year, so had a temporary return to 10mg from 7mg and then tapered back down. My problem is, although most of the stiffness has gone (I can still play 9 holes of golf occasionally and garden a little on most days), my pain levels have never really reduced that much. I have a fairly high pain tolerance, yet I have needed Cocodamol x 2 four times a day, and recently as a result of being referred to the local Pain Management Clinic, now use Oramorph for breakthrough pain that gets in the way of day-to-day life.
When I was under the care of the Pain Management Clinic the aim was to try to find a form of pain relief that did not depend on medication. They gave me a course of ten acupuncture sessions which did little to affect the pain. I have a TENS machine which causes some diversion when the pain is more achy/muscular, than the spasm/nerve type pain. In the end, they came to the conclusion that in order to be relatively comfortable, I should take Oramorph when the pain breaks through my usual pain medication. I have been using Oramorph once or twice later in the day, on most days, and then I can be relatively pain-free for a few hours. Of course, like the rest of you, I have those wonderful times when for no explicable reason, I am pain free without the need for extra medication, and raise false hopes that the ‘beast’ has gone!
Of course, describing pain to another person is almost impossible, but in essence I have a cape of deep nervy/creepy/spasmy pain around my shoulders, neck and rib area, but with more intensity on the left side often stretching down to my left buttock. Walking around and moderate activity eases the pain, indeed often clears it, but of course soon exhausts the limited energy supply, so that is not a viable solution. The most pain is felt during sitting. Lying absolutely flat is the most comfortable, next to exercising, but when the pain is at its worst is still not sufficient. I have a wonderful chiropractor (who is well up on PMR and in fact initially told me to go and see my GP as she was sure I had PMR) who keeps my poor abused back fairly mobile (the penalties we pay for an active and varied sporting life!). She seems to think the majority of the pain is PMR related and not as a result of mechanical defects.
My GP is also very sympathetic, and recognises that my pain is not reflected by the consistently low ESR/CRP readings (the only time they were in double figures was on diagnosis). She lets me manage the way in which I reduce, as long I as continue to reduce, and is aware of the 10% rule, provides me with a supply of 5mg.2.5mg and 1mg Pred as needed, has agreed that I should stop AA in light of its bad reputation, and makes sure I have an annual DEXA scan. I rather think, she too, is at a loss as to know what to do next, as to get to be pain free, I guess I would have to go back to about 20+ mg and that is not acceptable to either of us, as, however slow I go, anything less than that and the pain reappears (although happily not the stiffness).
I don’t feel so alone now I’ve shared my whinge, so thank you for ’ listening’ and any helpful advice would be appreciated.
Janet :?
0 likes, 6 replies
mrs_k
Posted
I am glad you have kept in touch and sad you are still in so much pain.
Have a look at Margaret's story under our stories on www.pmr-gca-northeast.co.uk And also read the BSR Guidelines on Methotextrate.
It just might be worth discussing this option. But it is a very personal decision and one not to be taken lightly. Your GP seems to be very clued up and a talk with both the GP and Rheumatologist might be of some use.
My favourite pain-killer - a measure of brandy. Brandy was developed in the Middle Ages by Monks as a medicine. I find that when other pain killers don't work - it does.Then I don't have to take the others.
Do keep in touch.
EileenH
Posted
I emailed a rheumy in Australia who runs a one-stop-shop private rheumatology practice to ask if any of them had any experience of using the other varieties of electrical stimulation besides TENS as these are claimed to be useful in inflammation. He wasn't much use in that respect but he did tell me that in Australia they look at using methotrexate at a very early stage in PMR. I'd have to be pretty convinced before I'd try it - as MrsK says, very personal decision - but maybe worth a consideration. Pauline from Dublin says she is beginning to feel less pain after a couple of weeks but it wipes her out totally for a day or so, Nefreet says that aspect improves with time.
If you feel better at a higher dose - have you ever tried taking your pred on alternate days? Once you get below 10mg per day you can consider it so you are well in that realm and I find that the double dose on every second day gives me far more relief than the same amount taken as single doses every day. In many people (not everyone though) the anti-inflammatory effect lasts much longer than the pred is actually in your body - and that means that the longterm side-effects are minimised. It is used quite a bit in other longterm conditions for that reason.
I know what you mean about the improvement with exercise and the problems coping with the exhaustion as I had 5 years dealing with PMR just like that as it wasn't dx'd (too young, nice try doc, but not so, if only!). Lying was definitely better than most sitting - although I have to be able to sit at my computer to work :roll: - and I find putting my feet up helps loads as well as using loads of cushions to give me back support. I prefer to drive than be a passenger - the driver's seat has a lumbar support. Originally I had to give up knitting because of pain a bit like you describe and there was a persistent tingling across my back at the bottom of my shoulder blades level that went round into my ribs, especially when sitting without support or standing. Mercifully that has now gone after several months of pred - but before it was Pilates and Bowen technique that kept me sane. Bowen \"replaces\" the muscles and their attachments where they should be - bit alternative but used by some physios and also well worth a whirl in my opinion. A good practitioner will not keep you hanging on if there is no improvement within 3 or 4 treatments - I could recommend 2 excellent and very honest practitioners in the northeast but I imagine you don't live there!!!!!
But do come and have a whinge - if it makes you feel less down no-one minds here! After all - it's a support forum and anything that affects our life with PMR should be covered :wink:
You have a super GP though if that's any consolation! Everyone should have one like that!
all the best,
Eileen
Dublin,_Ireland
Posted
Sorry to hear that you are still in such pain :cry: .
I am a fellow golfer who up until I was diagnosed April of last year could quite happily play 18 holes four days a week with no problems. Now I can manage an occasional 18...but only in a buggy as I haven't the stamina to walk :roll:
.
As Eileen said, I have just started on Methotrexate, as getting below 10mgs was not working for me and my rheumy feels I may also have Rheumatoid Arthritis.
Today ( 2 weeks after 1st dose) is the first day that I have had no pain or stiffness in a few months, so I think it must be working 8) . I am extremely tired and a bit nauseated the day after I take it, but I am beginning to realize that losing one day is far preferable to curtailed by pain and stiffness on the other six, and hopefully my body will learn to tolerate it better in a while.
I do hope you get some relief soon as all of us know on this site how difficult the constant pain and impact on everyday life is.
Very best wishes, Pauline.
jayeeh
Posted
Brandy sounds a good idea mrs k, but if you don’t mind, whisky is the tipple I turn to in times of need!!
Thank you Eileen for the reminder that alternative day therapy is an option when on a low dose of pred. We are off to the Scotland in our motor home tomorrow for a couple of weeks R and R, so I shall try out 7mg every other day, rather than 3.5mg per day, starting tomorrow. I will report on progress with this, as and when the vagaries of phone/internet signals across the far North allow!
Also, thank you mrs k, Eileen and Pauline for your suggestion that after a considered approach methotrexate could be an option. Having managed to drop of the Omeprazole and AA, in favour of natural remedies, naturally I am reluctant to add another drug, but if it is the steroid that is irritating my muscles, then I would consider it. Got lots of reading up to do now, before I see my GP in July for my two monthly review. Will certainly book a double appointment, as I think we shall have a lot to discuss.
We holiday in the Highland, Caithness, Sutherland regions of Scotland two or three times a year- a long trip, but we love the scenery, the wild life, and the lack of traffic. My husband is the driver and I am the tour guide, selecting where we will stay. My husband’s only request is that, if possible, we should be within literally spitting distance of either the sea or a loch. Usually manage to achieve that and we have seen wonderful wild life, including orca whales, bottle nose dolphins, common and grey seals, sea eagles, golden eagles, ospreys, red kites, puffins, red deer, to name just a few. This year our aim is to see sea otters (or just one will do). We caught a fleeting glance of one a few years ago, but have never watched one for any length of time.
Look forward to catching up with you all when we return, plus intermittent contact, I hope, whilst we are away.
Good wishes to you all.
Janet
PS I almost forgot, (not unusual!) but have any of you any experience of the use of Lyrica in the treatment of PMR? My cousin in Canada tells me that not only is it known there as a ‘miracle drug’ for the treatment of Fibromyalgia, but is increasingly being used to treat PMR. It, too, I believe comes with a nasty entourage of side effects. :evil:
J.
MrsO-UK_Surrey
Posted
Just to say, have a wonderful holiday and I hope the weather is kind to you. I'm not too sure if it is a good idea though to change your pattern of steroid dosing when starting out on a long journey. Perhaps others might think differently but it is generally recommended to choose a quiet moment to make reductions and I'm wondering if that could apply to switching to alternate day dosing as well?
Happy holidays. :D :star: :bus: (couldn't find a motor home!)
MrsO
EileenH
Posted
Re-reading your post - I think there might well be something else going on there and whilst there are a lot of complementary therapies I'm very sceptical about there are some worth trying. But they aren't an option whilst swanning round the Highlands! If you pass Blairgowrie, Alyth and Miegle give them a wave from me! Used to live there!
And so glad you feel better in some ways - after all, they say a trouble shared is a trouble halved! :lol:
Eileen