First I had residuals from Guillaine Barre and walking was poor. Then, I had breast cancer (no problem). Then I got PMR, walking worse. Husband died 18 months ago. Up and down with Pred. Now I am still back up on 14mg, weak as a kitten, have mild sciatica and trocanteric pain. Dr, who is trying, has kept me at 14, as CRP stopped rising at that level and put me on Penicillin for Cellulitis in swollen ankle. Changed diuretic that was needed for Pred. I find it hard to believe I will ever shift this! Weight up, Spirits down. Trying to walk out more now that ice is gone. Have others had cellulitis with this PMR? How are others doing with heating and fuel prices? I have invested in leg warmers which came today. Really at rock bottom.
Adding on conditions: First I had residuals from... - PMRGCAuk
Adding on conditions
Sorry that you have been having such a horrible time. I can see my costs rising to a scary level on my Smartmeter but my house is freezing anyway. I feel the cold very badly this Winter and suspect that it is part of the reason why I am stiffer. Cold, foggy all day and now raining! Please send the Spring.
yes indeed! I am a foreigner and have learned over 50 years up here that Spring may not make any difference! We need to go South!
I am in Brighton so I have gone pretty far South for the UK. The weather is horrible here.
According to local news programme on tv this evening the south coast was colder than Manchester first thing this morning [one of their sports reporters has flown back after covering a football match last night]…. and has been most of the week…
Sunday warmed up a bit then it deteriorated again.
SeaCat, I have always found that IceCream has restorative powers, wouldn’t you agree? Best might be Choc shakes, in any weather. And not high carb.
If was very restorative but the long walk home did me no good at all
My great niece’s school was shut because of the cold in Southampton.
We thought it only fair to share our weather 😅
I was thinking more like Southern California. My dear hubby went off and left me in Scotland. Will never forgive him.
Oh Gosh Scotland!!!!
northeast Scotland!
A friend is exploring our family tree again. I am part Scottish, Irish and Welsh so I shouldn't fear the weather.
I am Danish, Scottish and English. Perfect for PMR. Mother and brother had it. Loved doing family history but cannot sit up for much of anything these days. Trying to get a life with this stuff, but not succeeding. I dream of our days at UCLA and wonder where we went wrong. I worry my kids will get PMR too.
Nobody else in my family seems to have it. Perhaps you are the end of the curse
My mother had it from age 70 to 80, after which she had both hips replaced. She lived to 103 and never had any other illness except age.
So glad that she recovered.
I share the same ancestral roots!! I am sending you warm 🤗
Sisters! Except I forgot to mention a large contingent of Dutch!
And I have only recently discovered that I have significant roots in Ireland, County Kerry!
I left UK in 1974 BECAUSE of the weather! 😂 and the best lady in the world came with me. Today its 30C with a pleasant sea breeze. I dunno how people survive in UK weather. It nearly killed me.
Some of us [Vikings no less] are made of stronger stuff.. 😊
Hi. Coming from Finland the UK weather is just fine with me.But the big difference is that in Finland it is always nice and WARM inside but that is not the case in UK. I have just spent January in Finland and -10 was not so bad because whenever you went inside you had to take your thermals off.My arthritis was not worse over there. But balancing on icy streets was a challenge. I feel that the many saunas I have had over there were very beneficial .
Problem with UK (as a small island) we are accustomed to moderate temperates. So we aren’t geared up for either very cold or very hot conditions -personally or infrastructure wise!
But we do have glorious days -in all seasons.
Why it’s called a green and pleasant land 🤣😂
surely the scenery makes up for the cold …..just a little bit
Not even ...
my step father died on December 29th in hospital at 0705.
My father died on 29th at home at 19 10.
Can’t believe they died on the same day. The first funeral was yesterday and the next on 6th.
The stress has been overwhelming which is why I’m not my usual poetic self.
Interestingly the only condition that’s flared is the LS and IC…. so far
My condolences - very stressful. Hugs and look after yourself, it may hit you in the weeks to come. 🌸
Hugs.
Today is sunny in So Cal but I am still sitting in my pajamas dealing with internal bad stuff. Bless you, Abbey.
hi,
Sorry to hear you are having such a bad time, condolences on losing your husband last year…it does get better as time goes by…but you still miss the chats and having someone to use as a sounding board…. No matter how many years go by.
Weight should improve as you reduce the pred, and try and cut down as much as possible on carbs.
Just getting outdoors when it’s safe to do so does help to lift the spirits.
We do have others with cellulitis…hopefully they will be along to commiserate.
Thanks DL. I am kind of curious how all these things spring up and what is related. Really tired though
Stress can certainly be a factor in cancers and autoimmune diseases -and a/i illnesses seem to like company unfortunately.
And with what you’ve been through the last couple of years no wonder you are tired.
Take care
Thank you. I just needed some attention!
We do attention here - along will lots of other things as well… 😊
They’ve said it all. You’ve had an awful time. Sending you a hug.
So kind, thank you…
Big gentle hug x
Sending virtual hugs your way too. The weather will start getting better too and the clocks will change which always makes a difference. Well done you for going for your walks when you can. X💐
No wonder you feel down with all you’re contending with. Everything’s been said so sending big hugs. 🌺
Oh how awful. I was feeling sorry for myself with Cushings, frozen shoulder, PMR etc etc but you must be finding all this a challenge especially with the cold weather. Sending hugs (gentle ones) and hoping things improve very soon.
What a lot you have to cope with. I am so sorry that life has been battering you in this way.
I do find the seemingly endless PMR journey (and I am only 3 years in) extremely wearying. A couple of months back I had cellulitis which needed emergency IV treatment...fortunately here (I am in Israel) I didn't have to go into hospital. I just turned up for IV antibiotics for 20 minutes each evening in a local clinic. The pred makes us very susceptible to these infections.
I also had a systemic fungal function...also more likely with pred.
I have cut out all the usual carbs (nothing made with flour, no rice, potatoes, and of course no sugar). I also cut salt out to help prevent water retention.
40% of my hair has dropped out and my muscles wasted to nothing within a few weeks.
It is sometimes a case of battling through a day, or even a few hours, and giving oneself a pat on the back for small achievements.
You sound an amazingly resilient person...I do hope you acknowledge how much you have battled against and how much you have overcome on your journey. Better days and warmer weather do lie ahead.
Sending you a big virtual hug. What a tough time you are having and this weather certainly does not help with these endless autoimmune illnesses. This month seems to be going on forever. Take care.
It’s freezing in the New Forest, too! I’ve just been diagnosed with Reynauds Syndrome in hands & feet, but costs are too high & we have heating on for an hour in the morning & one at night! Yesterday my hubby forgot to put heating back to auto & it was on all night, absolute bliss…I also have bad osteoarthritis! I’ve been in hospital 3 times with cellulitis, but ut was before PMR (over 20 years before), so no link there, sorry. Condolences on losing your husband, that’s very tough. Hugs. I also have acute sciatica on right hand side & trochanteric bursitis (just diagnosed last week) on left hand side. It’s hard to keep spirits up, I think it will be easier for all when spring comes, please take care, S xx
Hugs to you, too, Pixix.
Thanks very much, S x
Sorry to hear you are have such an awful time. PMR will go...mine took @6 or 7 years but I went super slow. Sending you good vibes. I suggest you get a hot water bottle. When I am home and I don't put the heating on I sit with a duvet and hot water bottle. When I am really cold I hoover. Hang in there.
You have my sympathy - I keep looking at the UK weather and thinking NO!!! Wind and damp are poison for my PMR . My husband died something over a year ago and my daughters were both keen I should return to the UK, I live halfway up a mountain in northern Italy. They live in Fife and Yorkshire and both work in the NHS. Their tune has changed - "you don't want to come HERE" said one, and that was just for a few days visit for her birthday!
Though after a year I do know I am not on the breadline living here, I am rather more reluctant to try my luck in the UK. The temperature here has been consistently under freezing for weeks but there is very little wind and (usually) a fair bit of sun. Today it was -11C first thing and at mid-morning is still -7C but the sun is shining, it won't be too awful if I go out. I have visitors from the Devon/Dorset border at present - assuring me the weather isn't that bad! But they are talking about near Lyme Regis and they were stuck a few days ago as everything was sheet ice in the village. Fife and Yorkshire would be another matter and I am positive my cost of living would soar there. No council tax for the first residence here (if it is small and mine is). My heating is on for 2 hours in the morning and 3 or 4 in the evening. I have a blanket to hand to cover my feet and legs when sitting in the living room and a walk in the early afternoon, especially in the sun, makes the flat feel VERY cosy when I get back and make a cup of tea.
And I had to laugh on Tuesday evening when I had fetched them from Innsbruck airport and we went to the pizzeria for tea. Adam was complaining it was cold - I was just thinking how MILD it was! It was hovering around freezing at the time and not a breath of wind - so heaven knows how he is getting on skiing this morning - it was -12.5C first thing in the village and -8C up the mountain. AND you create your own wind while skiing!
You are all so kind! We left Calif in 1972 because we were invited here. We were tired of hate and assassinations. We expected to stay 5 years. However, when you do something like this you can hear the doors shut behind you. Moving countries is very expensive if you are not supported by a large company. It takes years to recover! So, here we stayed. Have nine GCHs and 1.5 GGCh. All was fine until it wasn’t! I can burn coal if it comes to it. You can pay a lot of fuel bills for the price of moving. Many thanks for all the kind wishes. 😘
Yes, when/if I return to the UK I probably won't bother taking what we can't get into a couple cars - no furniture. Removals used to be similar to the cost in the UK but then the B-word cropped up. What used to cost £4K is now £10K if you can find someone to do it - no-one here would want to go to the UK! The daughter and SIL both have HGV licences - they can come over in a hired van and I'll go minimalist. Retirement properties come with a kitchen and built-in wardrobes, just need a TV, a sofa and a couple of chairs and a bed. Back to IKEA where we always used to shop ...
Not all down to B** - although that has made things worse in this part of world.
Covid hasn’t helped… in lots of ways - nor current events in Europe.
According to daughter, NZ costs have escalated as well.
Oh costs have gone up but as soon as the complications of paperwork started, the costs more than doubled overnight. You used to be able to book part loads because there was so much going back and forth - and that has all stopped. A load would set off from A to deliver at B where they picked up again and delivered at C, rinse and repeat until they picked up a final load to bring back to approximately A. You could slot in at some point on that multi-stage trip. They don't happen now.
Supply and demand ...
Paperwork has certainly become s nightmare -that’s for sure!
The true cost was getting across the Atlantic and then having very little when we got here. We left most of our things behind.
Now, I have Attendance Allowance with home help. A variety of supporters makes a huge difference. It’s not good to be infirm on your own, perhaps. I miss the intelligent input of our former life, but at least I still have books, music and piano.
I think the issue is usually the cost of rent?
Well, PRO, can you eat Italian pasta? Isn't it purer? Stay warm.
Sorry - don't understand what you mean? I shouldn't eat pasta - very carby!!!!!!
So sorry too hear you are feeling so low. I've had my own catalogue of troubles too including losing my hubby in Aug 22. I am prone to bouts of depression , started at school. I have been lucky enough to encounter good doctors who have helped me. I've been taking Prednisolone since 2016 and now on a maintenance dose of 5mg daily. Thankfully the depression and mood swings I got at higher doses have now subsided. I still take antidepressants but in a small dose.
My personal coping strategy is to not plan too much in advance. No more than a couple of days. Making sure I don't put pressure on myself as that just sets up failure and triggers the feelings of worthlessness.
I try to include something enjoyable every day. Not big things but little things like doing a hobby or going to see a friend if I am well enough. I try to keep moving every day even if it's parking the car further from the shop just little things that I can achieve. Some days that little thing might simply be getting up and dressed.
For me the way I have coped is with acceptance of my conditions and situation. If somebody had told me this 20 years ago I would have scoffed. Not any more. The mind is so powerful and you can actually choose how you deal with things. I am helped by my Buddhist faith and the practices I do but I don't think you have to be religious or of any faith to use the mind to your advantage. I read something HH The Dalai Lama wrote "if you are worried about something can you change it? If so, then change it, if not then don't worry about it". It's taken me a long time to work this through.
I am only writing this to share my own thoughts not to preach or influence in any way. If by someone reading this it helps, even just a little bit, then it has helped someone cope and knowing that helps with my own self-worth.
I hope that you soon start to feel better. Like the little snowdrop pushing through the snow and ice to feel the first rays of the spring sun. It takes a huge effort to keep going but we will see the light again xxx
I think it is absolutely crucial - otherwise you would go mad. The last 18 months here have been, um, INTERESTING. Someone else might say "sh%tty", It is what it is and I can't go back and change things. So I have to get on with it and worrying about it won't help.
Acceptance is what helps, but it can be nearly impossible.
‘Acceptance is what helps, but it can be nearly impossible’
It certainly does helps, and you need to make it possible, otherwise you never move on, take it from me…
S4ndy, There is a book: Feeling Good by David Burns. It’s about 30 years old, but the basis of todays Cognitive Therapy. It straightened me out almost immediately. It’s thesis is uncomplicated in that it suggests that our thoughts determine our emotions and moods and that if we are depressed, there is a Distortion in our thinking. Find the distortion and you feel better. For instance, you mention feeling worthless, when worth really stays the same throughout life. What May change is earning power or working ability, which is different than worth. I think you might like this book.
My distortion yesterday was that I was thinking I will never get over this illness. There is no evidence that this is true. Most people do.
Thank you for your kind words and help. I am so sorry you lost your husband this year. I spent 15 months watching TV dumbly. But now I am trying to do more with what I have, wake up and try.
All the best.
Abbey, you have had the trials of Jobe. Yet, you are still fighting and wanting to walk, and to reach out and be part of a community. You are strong, indeed. Glad you have a doc who is keeping an eye out for you.
Sandy, good advice.
You have had a very difficult time over the years.Sorry about your husband passing.Please keep on fighting your horrible illnesses.Sending you lots of hugs.This forum is a godsend to many of us.It helps to talk things through and get some advice.x
Thanks Bella. It's only three, plus Pred!
Yes CBY can be of help, as in David Burns, and before him Aaron Beck, and before him Albert Ellis , and bef ore him Adler, and before him Rosencrantz and and Guildenstern from Hamlet-"there is nothing good or bad but that thinking makes it so", great advice but difficult wthen pain meds or excessive fatigue make the day more difficult than the power if one's mind can overcome. Dealing with PMR three years and now a burst Bakers syst with one calf twice the size of the other, need a larger cerebrum I guess.
It sounds like you have had the whole load of hay. I'm sorry to hear of it. My suggestion is that if we can avoid depression on top of all that discomfort and worry, it would be a good thing. I will look up Bakers Cyst.
CBT- Cognitive Behavioral Therapy
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