Bad nights and that book!

[Threeyearson]

Hi!

Just a question and a quick comment.

Question ... I have noticed that I often have really bad nights, waking with pain in very early hours and a lot of feverish sweating. Then I finally wake for the last time and have to wait to cool off before I get out of bed I am so feverish, muscles all burning with pain. The strange thing is that once I have taken my meds,rested a little and am up and moving the day is much freer from pain than usual! It is almost worth having a bad night for such a good day. Does anyone else experience this or know what is going on?

Reading recent posts about how little family and friends tend to understand I found that leaving Kate's book around did no good but handing it to them and saying 'please read this so that you can understand and support me' worked wonders. We are so reluctant to actually ask for help or understanding but that taught me a lesson and I have reaped a rich reward.

I am now a four and a half year person, now in the middle of a house move so am really glad that my family understand.

Hope you all have a good day!

[PMRpro Ambassador]

It has been noticed/mentioned in the past that a bad night where you wriggle about can mean less discomfort next day, especially when you get out of bed after 4am for the toilet - and it was suggested that you are interfering with the stiffness caused by the cytokines which are shed about 4am-ish. I remember quite clearly waking at 3.30 am and deciding I might as well go to the loo straight away or I'd never get back to sleep and being pain-free and mobile but when I got up at 8am I could barely move. It's the same as the myogelosis that is one of the typical signs of PMR - stiffening after sitting for a time. In my case that was with PMR and no pred - as the day progressed I was less and less stiff and aqua aerobics classes early in the morning definitely made the rest of the day better. PMR without bursitis is actually fairly manageable without pred - having bursitis with pred is far worse. That's why I keep saying to try to get any bursitis dealt with with local cortisone injections if you can.

[Miserere in reply to PMRpro]

PMRpro - I have just had a steroid injection into my knee (2 weeks ago) but it has made little difference. I can see the bursa beginning to swell - it's like watching a slow motion injury. The first time it happened - 2 years ago - they came up more quickly and resulted in a night in A&E and aspiration followed by a very long rehab period - it took me two months to walk around the house and gradually I progressed to walking normally over the next year. Then they became swollen again but not as badly and took less time to improve. I had got to the stage of walking normally again for 2-3 miles and but in December the knee began to tighten again and now I am stuck with a slowly swelling knee again - and stuck because I'm nearly at the stage where I can't walk. I have an assessment with the physio next week but the practice nurse, GPs when I used to have one, etc. all say it's nothing to do with PMR. Because I'm beginning to feel anxious the system demands more cortisol and I have increased from 6mg to 10mg but really don't want to increase any more. It's OK at present, just feeling a little down due, probably, to frustration and with the current state of the NHS, unsupported and unimportant.

Very sorry for moaning - just wondering if the knee problem can be connect to PMR. Other joints, i.e. thumb, are beginning to ache too. Oh, well ...

[PMRpro Ambassador in reply to Miserere]

Well, given that knee bursitis could well be associated with PMR - I would have said it was a reasonable thought. Are they sure it is bursitis rather than capsulitis which is found in almost all PMR patients if they look carefully

pubmed.ncbi.nlm.nih.gov/238...

and can also be treated with steroid injections. Thing is - when they are part of PMR they do tend to be bilateral and that is probably why the nurse etc dismissed it.

RICE (Rest, Ice, Compression, Elevation) ... But that is really unhelpful when you have to use the leg to do anything except sit! Do you have crutches to be able to rest it when moving around? I kept a pair after an accident - we pay a deposit here that you get back when you return them! - and it was the best 20 euros worth ever!!!

[Miserere in reply to PMRpro]

Thanks so much for your response - I am just unsure of everything at the moment. No-one has mentioned capsulitis so I shall mention it - but - it is not bilateral, thank heavens. There is osteoarthritis but I was walking absolutely fine in December and it has slowly been getting worse ever since without me doing anything to make it worse. The MRI I had done in 2021 noted OA changes (didn't say how bad) but little else. When I did see a GP it was for him to tell me I was getting old (I was 66 at the time), so what did I expect. I restrained myself from poking him in the eye and I don't bother going anywhere near him now - he is a locum and the only one in the practice.

The steroid injection does not appear to have done anything and I shall have to wait until next week to be assessed by a physio and I suppose I just have to work from there. I still find it hard to come to terms with the fact that in January 2020 all was well and we were clambering all over the North Yorks coastal paths feeling fit as fleas - and then PMR in February and I am a different person. I expect the uncertainty makes me anxious which increases bp, which increases anxiety and on and on. I am doing breathing exercises, meditation and somatic exercises to cope.

Anyway, I have a walking stick and am using that as I can't walk without it now. When I see the physio I shall ask about a frame or crutches. Until then I shall RICE but the nurse told me to keep moving or it would seize up. However, if I walk on it it seems to get worse. I can flex and bend it so not quite like the last time.

Again, I am sorry to moan on - and I really thank you for all your guidance and help. It is so much appreciated!

[PMRpro Ambassador in reply to Miserere]

"the nurse told me to keep moving or it would seize up"

Qualified in physiotherapy as well now is she? It depends what is causing it - it needs to be gently moved but that isn't always the same as walking on it. The UK has this rather touching faith that telling every patient to keep moving will cure all problems - appropriate physio perhaps but sometimes that is a very different thing.

[bakingD in reply to Miserere]

Hi just wanted to say I requested a repeat MRI when my knee became worse ie more stiff,swollen and painful and it showed 3 meniscus tears which were new so having surgery- I was reluctant to up my steroid dose until I knew if it was PMR or not

My Rheumatologist Dr Hughes thinks cause is unrelated to steroids

Anything that worsens might be good to ask for repeat MRI so you know what’s wrong

[Miserere in reply to bakingD]

Thanks for responding, bakingD. Can I ask how old you are? Prior to my first MRI the GP said that she was not sure 'they' would allow one - I assume because I was 66 and so regarded as probably suffering with OA - in which case the NHS seem to want to drop you like a stone. Mind you, she also told me I did not need a steroid emergency card, didn't need calciuim, could take vit D if I wanted to and failed to tell me that my blood sugars had moved into the pre-diabetic range.

I am considering the GAPS diet - the intro looks a bit daunting but I have little faith in GPs at my surgery (actually there's only one locum) and feel I need to do whatever I can myself.

I shall ask about another MRI and see what they say.

There are some really good people in the NHS - frontline staff who put themselves on the line during the pandemic. I am sure there are also good GPs here and there, but the majority seemed to scuttle out of their surgeries and, like many workers, have declined to return to normal working practice.

[PMRpro Ambassador in reply to Miserere]

You might find this interesting:

healthline.com/nutrition/ga...

an evidence based review - not marketing based ...

[Miserere in reply to PMRpro]

Thanks for this, PMRpro. I have the updated book entitled Gut and Physiology Syndrome, which covers autoimmunity, arthritis and many other diseases. I am working my way through it now purely because Sarah Myhill mentions the intro phase as helping with arthritis. The full GAPS diet is very similar to her Paleo/Ketogenic diet which is low carb and dairy free - not difficult to follow. It may be that I do the intro and move on to the PK diet. I feel I must pursue every sensible avenue that I can as one has to help oneself.

I am very fortunate to have an excellent farm that I go to for all my meat - animals are grass fed and I know that they are not treated with any antibiotics etc. unless absolutely necessary. He runs a mixed farm and does not apply tons of fertiliser to his grass but follows the old rotational system and he is very generous with stock bones which I am very grateful for. I worked out my costs on this - I visit every 3 months on average - it means a 50 mile round trip - and for two of us it works out about £12-14/week (we don't eat steak every day of the week by any means - in fact I concentrate on cheaper cuts - better for you in any case).

So, my feeling is that that it is worth a go. I have heard so many horror stories close to where we live to leave everything to chance.

[Miserere in reply to PMRpro]

Just an addition which anyone might find interesting. I sometimes follow Dr Malcom Kendrick - he of Doctoring Data fame and Statin Nation. His two most recent blog posts - one on 'Corruption' and the other on 'Drug Regulation' are particularly interesting - or alarming - depending on how you view things. He also has a dry sense of humour which make them very readable - although the one on corruption meanders a little at first!

drmalcolmkendrick.org/autho...

[bakingD in reply to Miserere]

Hi

Am 59 and wanted to know why my knee was so much worse so asked for repeat MRI

I also have a bit of pain in my other knee and awaiting MRI on that

Am a nurse so am a bit pushy sometimes but it gets things done!

I will look at GAPS diet never heard of that

[Miserere in reply to bakingD]

Hallo bakingD - if you look at the GAPS diet then get the up to date book - GAPS and Physiology Syndrome rather than the older GAPS and Psychology Syndrome and see my answer to PMRpro. I do follow Dr Sarah Myhill - when I realised what PMR was all about my GP was not helpful - but I came across Dr Myhill and registered for one of her online workshops. You could send the results of a blood test or whatever through in advance and she would look at it during the workshop (about 10 or 12 partipitants). It cost £40 which, to me, was money well spent. She immediately said 'well, you are pre-diabetic if not already diabetic.' That took less than 5 minutes of seeing my results and so I was able to take action myself. She also mentioned other, more minor problems, which I can now address. I must say when I asked why my practice had not informed me they became embarrassed and that's when, for a short while, they decided I needed a steroid card etc. etc.

Good luck - and well done on being pushy - something I'm actually not good at but perhaps I need to try. Sorry, but my feeling is that if the GPs were working properly there would be less strain on our over-worked hospitals. My husband was referred straight through for prostate cancer and has received absolutely excellent treatment from the hospital and neither he nor I can praise the hospital staff highly enough!

[Celtic PMRGCAuk volunteer]

Usually those really bad feverish nights occur around the time of diagnosis. I can only assume that as you are feeling so well during the day, perhaps the effects of the present dose of steroids you are taking (probably early in the day as generally recommended?) are not lasting long enough to be of benefit through the night. I'm wondering whether slightly splitting your steroid dose might help, say two-thirds in the morning and the remainder in the evening? We've come across a few people who have found benefits from this.

[Lori23 in reply to Celtic]

Hi I've had pmr for 4 years now doctor said inflammation has gone weening of preds but my neck muscles are stiff and pain goes up my head ,when will this go away has anyone got those symptoms,fed up had a bad night lol

[PMRpro Ambassador in reply to Lori23]

And exactly WHAT makes him think the inflammation has gone? The only way you can tell is being able to get totally off pred without a return of symptoms. Until then, the best you can tell is that the current dose of pred is enough to manage the inflammation created daily by the autoimmune part of the disorder. That's why you have to keep trying to reduce in small steps right from the start to find the lowest dose that does that. It may or may not be zero.

However - I suggest you start a new thread - this is a very old one and many current members won't see it to reply.

[Lori23 in reply to PMRpro]

Hi i had a esr blood test and he said the imflamation has gone cut down on the preds every six weeks take one less its not working. Thanks for all your info its good

[Runrig01]

I know of one other person who suffered a lot at night. She split her dose, and took a small portion of it in the evening and found it helped.

I agree you have to really tell others to read the book, rather than leave it lying around. After my hubby researched on the Internet, he realised why every flight of stairs is like a mountain to me. My daughter loves in London and my heart sinks when we have to travel on the underground. Hope the family take most of the stress of the house move for you. 😃xx

[Lori23 in reply to Runrig01]

What is this book and where can i get it from ☺

[PMRpro Ambassador in reply to Lori23]

Kate Gilbert's book about living with PMR - can't remember the name, a survival guide maybe? You can get it from Amazon, and as an ebook version too.

[Lori23 in reply to PMRpro]

Thanks 😀

[Lori23 in reply to PMRpro]

Ordered book on line can't wait to read it ,I wish I found this site a few years ago had no one to talk to about my condition , thanks 😜😀

[venezia1]

Taking pred for 4 plus years started on 80, now on 12.5. I got fed up with waking in pools of sweat anytime between 1.30 and 4a.m., so split my dose between 2.a.m. and 10a.m.. Sometimes a bit stiff in the evening but most of the sweats have gone. I recommend experimenting with the times!

[Zoesquare1]

I struggled w/ night &morning pain & now divide a 12.5 mg total dose. After much experimentation I found that 10mg @ waking & 2.5mg before noon was just the ticket.... An evenly divided dose didn't work to fully banish my morning pain, while a late PM dose = pain-free insomnia that night. Now, my body warns me ~12-1pm w/ burning wrists if I'm late w/ the 11:30 am dose of 2.5mg!

So recommend that you experiment w divided doses and see what your body wants. Good luck!