New to the group but needing support

[CallyT]

Hi everyone, i was diagnosed in October 2016 with PMR and started on 15mg of pred plus the once a week AA. I am now down to 4mg with a bit of yoyoing around with tapering off, but my aches have moved around in the last 6 weeks now including around my ribs and right up into the back of my head from each tight shoulder and neck. This makes both sneezing and reversing painful and difficult!! The Pred seems to kick in after about 2.5 hours but is it normal for the aches to move around? I work full time (and a bit more) and find i get tired more easily - at 57 and always very active this is frustrating!! I am going to start gentle running in the New Year and have just has 2 Bowen therapies with another next week, hoping this will help the neck as it really helped my hips. My skin on my legs is itchy in places and i would love some advice on this, also the skin above my eyes is often red and dry - is there a cream anyone recommends for this?

Tell me there is light at the end of the tunnel....... thanks everyone look forward to any help for these issues above.

Is there a support group in the Oxford/Cotswold area?

[PMRpro Ambassador]

pmrgca.co.uk/groups/

To be down to 4mg in not much over a year is quite fast. When you started with pred how pain-free were you? Whatever that was is your yard stick for your reduction - and it sounds to me as if you may have been putting up with rather more than you should have.

I would say that what you describe is typical of myofascial pain syndrome which forms trigger points in the shoulders, about rib level and in the lower back - and they can irritate nearby nerves and lead to referred pain in the neck, about rib level and in the low back and upper legs. It is caused by the same inflammatory substances as PMR just they are not systemic (throughout the body) but concentrated in the fascia (the transparent skin you will be familiar with from joints of poultry or meat) and in these trigger points which can be felt as hardened knots of inflamed muscles fibres in the places I described. It often responds to higher doses of pred but returns as the dose falls. The good news is that I found Bowen therapy very useful. A good sports physio or therapeutic massage therapist may also be very helpful - that is what I depend on these days in the absence of a really good Bowen therapist.

Have you tried Doublebase or Diprobase for the dry itchy skin? A kind GP may prescribe it (if they still can) but it is available OTC and isn't horrendously expensive. Stop using soap products - anything that foams strips the natural oils from the skin and dries it out. It isn't early psoriasis is it?

[CallyT in reply to PMRpro]

Thank you so much for your wise words and advice, I have gone back up to 5mg today and hope this will help - going back to work was a bit of a shock to the system!! I have some Diprobase OTC so will continue with that and avoid soap.

[Slowdown]

Hello CallyT, I can only echo what PMRpro has said about Bowen therapy, I had the recommended 3 sessions to begin with and slept after each of them much better than in the previous 2 years of PMR and have had top-ups every now and then. If I have particular aches and pains (such as now with lower back and sometimes neck ) my therapist targets those but otherwise I go for an all-over MOT every 3 or 4 months. Such a treat! And we are worth it

Also Doublebase cream, apply freely and do a little gentle leg massage at the same time. Tiredness can be very frustrating and you sound very busy, one of the first mantras of PMR is Pace Yourself although if you're working it's difficult. Most of us on the forum seem to have had very active/fulfilling/stressful lives when PMR suddenly strikes and I, for one, was in denial that this was going to change anything - ha! Acceptance and lifestyle changes to a more mindful, slower pace of living were quite a long time coming, not the most patient person .. but there IS light at the end of the tunnel and you learn a lot from this supportive community, and just reading and contributing posts is good therapy by putting us in touch with people who fully empathise whilst sharing some laughter along the way. Best of luck for 2018!

[CallyT in reply to Slowdown]

Hi Slowdown - thank you for your reply - it is good to know that I am not alone in all this, but can admit that I am in denial that my lifestyle will change because of PMR, I just don't want to give in to it but through reading others on here I realise that perhaps I must. I have also been driven to reduce my Pred levels on a monthly basis but am beginning to understand that it is all about how my body feels and reacts and it is an inexact science rather than just dropping a mg each month, how easy that would be!!

Thank you for your support and advice, I will try and slow down (just not in my nature!!) - new years resolution is to take care of me!!

[PMRpro Ambassador in reply to CallyT]

If you slow down a bit and - more important perhaps - learn to adapt what you do you won't lose out as much as if you keep on trying to barge at life as usual.

Living well with chronic illness is mostly about compromise. Some things take no prisoners and are harder but with PMR it is possible to keep doing things relatively well providing you accept some limitations. Obviously there are some people who can't - and they should never be made to feel they aren't trying - but in many cases it is a question of learning how "their PMR" works.

Just last spring an 80-year-old gentleman on another forum had been forced into a wheelchair when he had a flare (forcing a reduction I suspect) and was beside himself because he thought he couldn't do anything and his ski instructor life was at an end. So I told him to get out and start walking - 5min at a time to start and build it up SLOWLY. And to reduce SLOWLY. A couple of weeks ago he posted a photo of himself up the mountain as a Santa on skis giving a ski lesson to a small child. And he is down to under 12mg from 30mg in the spring.

Perhaps I should also mention he is sure some of it is due to diet. His wife is on an anti-inflammatory diet which is aimed at reducing her migraines which she got on an almost constant basis. Since then she has had 2 migraines, right at the start! He is doing it to keep her company - but is convinced it is helping him too. Obviously she has eliminated something that triggers her migrains - but it is low carb which is helping him.