Pain, stiffness then nothing

[Abbey17]

I’m a bit confused, I’ve been on 1mg for two & half months. Difficult at first despite slow tapering, but since things “settled” I can have 2 or 3 days feeling great, no real problems, then a day or two where I can hardly walk, chronic stiffness and pain. Seeing the GP next month, but as I’m having good days, I’m reluctant to go up until I’ve seen him. I can’t kneel down as pain in both knees so bad (new symptom) even on my good days.

It’s very Jekyll & Hyde, anyone else experienced this? Apologies if it’s been covered before.

[SnazzyD]

Have you been Jekyll and Hyde with your activity? So, good days you do lots of ‘those’ jobs etc and then you get payback from your muscles that might still be a bit more fragile than they were.

[Abbey17 in reply to SnazzyD]

Not really, I’ve learned from my past mistakes there, so I’m more careful. Also I am self employed and have learned to work differently and pace myself. It just seems to come from nowhere, and is literally one extreme to the other. Yesterday I could hardly walk, chronic stiffness, then by the afternoon I felt ‘normal’ like pre-pmr. Today, the other way around, felt great this morning but had a quiet morning reading. Now I can hardly stand.

[PMRpro Ambassador]

And on those 2 or 3 days where you feel good - what do you do? I bet you try to catch up on anything and everything that needs to be done? So your body protests vocally and MAKES you rest ...

[Abbey17 in reply to PMRpro]

That is definitely the ‘old’ me, but now, not really, I’ve learned from past mistakes. And I don’t trust this damn disease.

[PMRpro Ambassador in reply to Abbey17]

How strange - but not trusting it is a good ploy!

[ponai]

Does the weather make any difference? I thought I was making progress until this latest storm appeared. Difficult balancing all the variables, but good and bad patches do seem to reflect the weather/air pressure.

[Abbey17 in reply to ponai]

Yes it definitely does. I just thought all was going well then these pockets emerge. But change in air pressure really does affect things

[PMRpro Ambassador in reply to ponai]

That has been shown in studies - not just imagination!

[agingfeminist in reply to PMRpro]

really intrigued by this...do you have any links? many thanks

[PMRpro Ambassador in reply to agingfeminist]

There are links to the original studies in this article

medicalnewstoday.com/articl...

Google gives a lot of links - I searched "effect of weather on rheumatism"

reumatologiaclinica.org/es-...

[MiniSpec in reply to PMRpro]

Apparently my grandmother couldn't wear a watch. If she did it would stop because she was so magnetic! She could also tell when a storm was brewing and it made her feel ill.

My mum also suffered really bad headaches whenever there was a storm brewing as well, and I think it was from the increased electrical activity in the air, not just the air pressure that caused it.

[PMRpro Ambassador in reply to MiniSpec]

I have only been able to wear a watch for more than a couple of years since battery operated ones appeared. I used to be 3 days better than the Met Office for a change in the weather! It is so unpredictable up here in the mountains that that has reduced but definitely still the day before.

[Stills in reply to ponai]

Weather definitely affects my joint stiffness but usually with a delay so worse after a rainy day not during it. Interestingly extreme heat 35+ heatwave days increase the pain level but not the swelling. It’s all very odd but then so is the weather 😜

[Pixix]

could be totally unrelated, we are all different, but I have had these issues, & mine is osteoarthritis which was masked (& helped by) the pred. It was busy getting worse as I tapered, then much worse! It affects my hands, wrists, hips, toes! I had an x-Ray to check if I’d broken my ankle after a nasty fall 3 weeks ago, & the result was no broken bone, but a lot of degeneration easily seen on the x-Ray. (Quick thought…does that mean I should ask for a dexa scan, I’ve never had one?,!) Mine are definitely affected by the climate, mainly hot & cold, but also dry and wet. Just a thought. Changes in air pressure? Yes, I can tell you when a storm is coming without a barometer! I also suffer from thunderstorm asthma (never asthmatic normally) & consuktant said it’s a reall problem, not just one that sounds silly!!

[PMRpro Ambassador in reply to Pixix]

Degeneration seen on x-ray is not the same as osteoporosis - and often osteoarthritis gives a falso impression of bone density as the damage creates denser tissue.

[Pixix in reply to PMRpro]

Great news, thanks! I really don’t need to be in the queue for anything else right now. Thanks for the explanation, very interesting, I had no idea & hadn’t googled yet! Poor old Dr Google. Much nicer to get your help, but absorbing a lot right now, & brain fog at an all time high! Opticians this afternoon, had nasty temporal headaches in past week, but no jaw issues (apart from norm, as it dislocated from time to time)! But I had dreadful eye pain, burning, stinging, then looked like I was in floods of tears. Second occasion. Could be allergy I hope. Thanks, S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Please let us know outcome of this afternoon’s appointment.

[Pixix in reply to DorsetLady]

Thanks. Optician thinks it’s either a bad batch of contact lens solution, or my eyes have just realised (after years of use) that they don’t like it. Throw away current bottle of solution, try another. Use sterile water to rinse lenses. If this doesn’t work & it happens again, or I get blurred vision, or jaw trouble go straight back. He seemed to know GCA quite well, asked all the questions I’ve learned on here! However, he diagnosed macular degeneration, dry type, no treatment available. Guinness book of records, number of named syndromes/diseases/bad stuff here I come. MyDad had wet macular degeneration & was virtually blind the last ten years of his life. Watched him try to adapt his life, very tough. They can treat the wet version now, but not the dry, unfortunately. Thanks for asking, kind of you. I’m lucky it wasn’t GCA, you weren’t. Im sorry for that, S x

[DorsetLady PMRGCAuk volunteer in reply to Pixix]

Let’s hope optician is right on the lens issue -and it’s sorted out easily.

Sorry to hear about macular degeneration…. 🌸

[Pixix in reply to DorsetLady]

Thanks. Me, too. It was dreadful watching Dad go blind, but I never thought I may do it myself! Not hereditary, but more likely to get it! Hm. Straw & camel’s back atm. S x

[PMRpro Ambassador in reply to Pixix]

I had a similar problem at the start of PMR - suddenly had bright red, sore eyes. Having ruled everything else out we decided it was a reaction to the "new improved" version of the contact lens solution I had used for years. They had changed the recipe without warning and it was horrendous - quite a few people had problems. Never managed to become happy with lenses again. Dailies were not too bad but far too expensive overall so I gave up and went back to specs.

Sorry to hear about the dry AMD - the first treatment has been approved by the FDA. There is hope.

[Stills in reply to PMRpro]

I wore contacts but developed dry eye and a visible cyst in my late 2Os. The cyst disappeared in a few years and then I started on daily’s with extra viscosity drops and I managed with those until my early 50s. Oddly menopause made my eyes dry as marbles so I’m back to glasses these last ten years. This year has been traumatic emotionally and I’ve become unwell and Stills is playing up but what’s interesting is my eyes are joining in with strange pains etc. Are they like hair and nails perhaps, an early barometer of things afoot?

[PMRpro Ambassador in reply to Stills]

Interesting thought

[Pixix in reply to PMRpro]

Thanks! Sounds much the same, very interesting. Good to know the USA has a treatment for dry AMD…nothing here at all, according to my new optician (haven’t tried Dr Google yet!) I love contacts as my stigmatism is such that my glasses were like bottle bottoms from age 7, until they made lenses in my prescription, which was when I was 25!! Now I’ve found I can get dailies at last, but £42 a month, & currently paying £18 a month for monthly ones. Trying to keep hopeful, but a bit of a case of the straw that broke the camel’s back here today. Good job there’s rugby! Question off topic…best airport to fly into for the Dolomites area, if you’re going to drive. When we went to Merano there was so much public transport, buses, trains, lifts up mountains…we flew into Verona & took train up there. But now I’ve driven in the Dordogne & Umbria/Tuscany I wouldn’t mind trying it in the north of Italy! Hope you had a great journey to meet your daughter, & good rugby, though I realise Scotland were knocked out! S x

[PMRpro Ambassador in reply to Pixix]

I have multiple teams - just not England ... Wales was my first team as a child and love Ireland.

We actually like our tourists to use the public transport, in summer you can get pretty much everywhere and it is so cheap with the tourist ticket you get with most accommodation. In August the mountain passes are nose to tail traffic, lots of motorbikes and cyclists so they often have restrictions on private vehicles.

Depends where you fly from, where you want to go and what you want to pay - it is easy from the south. There is a direct flight from Stansted to Bolzano in winter, new so not sure how it will continue into the summer. Gatwick to Innsbruck with EasyJet and BA and half an hour up the Brenner and you cross the border, Treviso is almost on the edge of the mountains, the drive from Treviso to Cortina and on up here is one of my favourite drives - love picking people up from there. Verona and Bergamo are both only a short drive into the Lake Garda edge of the Dolomites.

[Pixix in reply to PMRpro]

We wouldn’t be going up mountain passes, joining crowds! Drive from village to cable car/chair lift etc. drive to supermarket, we always stay self catering these days. Better, Covid & other bugs wise, to drive rather than share public transport! Interesting reflight ideas, many thanks, will look at Innsbruck…we could have some time there, too, Igls, Neustift etc. Sadly, Stansted is our hardest airport to get to! Thanks very much. I like the idea of having multiple rugby teams…you don’t lose so often!! S x

[PMRpro Ambassador in reply to Pixix]

Dunno - they ALL lost in the quarters!!!!!

Yes, do get your point. Not up for driving here with the camper?

[Pixix in reply to PMRpro]

No, it takes too long! Like to be at home, like to be in Italy…but don’t need to be on long long boring road journeys!! Suppose I could take a look at the route! Hm…..

[PMRpro Ambassador in reply to Pixix]

Even having done it LOADS of times, I still look forward to it. Lovely vineyards to stop at on the way when planned properly. It is part of the whole thing for me.

[Pixix in reply to PMRpro]

Yes, if we did it, it would be to see & enjoy time on the way! Neither of us like the taste of wine…& I can’t drink alcohol on my tablets. The optician asked me if I rattle when I walk when he was inputting my drugs into the computer. So…vineyards…no! Lakes & mountains…yes! We had 2 weeks in the Dordogne …wine everywhere…& then Tuscany! Ha ha, S x

[PMRpro Ambassador in reply to Pixix]

Dolomites has less wine - but we are still a leading wine producing region, especially in terms of quality! But vineyards also make for beautiful scenery - and here they are mixed with apple trees. And the towns they are centred on tend to be very pretty.

[Pixix in reply to PMRpro]

I agree! Where we stayed this year had a beautiful olive grove below us, & they have a beauty, too, I think. Whoops, but neither of us like olives! It’s weird that the only two food/drink items that we aren’t keen on are grown in abundance in some of our favourite places!! I nearly rented a property in a vineyard, it was stunning. But, to be. Quite frank, I thought it better that wine drinkers had that opportunity, & also, the owners stood to enjoy those visitors more (& add to their profits, naturally!) S x

[PMR2011]

Have you tried an over the counter pain med such as Tylenol to see if that helps? When I had got to low dose Pred, not only did pain from Osteoarthritis show up (hands for me) I also felt pain from old injuries and scars. It was strange but went away once off Pred.