Chronic pain: Interesting read here, sorry it’s not... - LUPUS UK

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Chronic pain

stillsdisease profile image

Interesting read here, sorry it’s not a link but a screen shot was the was the only way I could get this here.

17 Replies

I think this is the link:

bbc.co.uk/news/health-61309962

stillsdisease profile image
stillsdisease in reply to baba

Thanks, I’ll need to ask my granddaughter to show me how 👵🏼

I suppose that Long Covid may improve the knowledge - but it won't improve supply because the demand is going to be massive. And because we aren't Covid we will be at the back of the queue. I had a really good pain clinic here but it disappeared when the anaesthetists who run it were needed in ICU and it hasn't reappeared. The last 3 months have been horrible - my rheumy has done a fair job but not quite the same and I was already immobile by the time I saw him - know how to get round that now though.

But only a quarter? And I blame the total disinterest showed by the average UK GP who can't tell the difference and identify the ones who need proper diagnosis from the pulled muscle brigade ... "Here'a script for painkillers and/or antidepressants ..."

Krazykat26 profile image
Krazykat26 in reply to PMRpro

Hi Pro 🤗I popped onto your home forum a few weeks ago..I stayed for a while but had to come off again as the posts overwhelmed the lupus posts!! 😹My my you are a busy forum!! Anyway i found your method of tapering Pred..the DSNS method n I've been trying it for the first time reducing from 4.5-4mgs. I'm at the stage where ive had a 4.5mg today n will start with two days at 4mgs tomorrow. The weather has been really changeable here which causes havoc with me anyway but I'd just like to ask you if at this stage would that be likely that I'm experiencing the drop now?

Previously I would drop 0.5mgs on a Monday n feel the effects about 4 days later for a few days. 💜🌈😽😽Xx

PMRpro profile image
PMRpro in reply to Krazykat26

Could be - and I would take that as a sign you need nearer 4.5mg than 4mg at present to manage your symptoms. The weather does really mess things up - UK doctors go poo-poo but here they accept it as normal that weather makes you feel rubbish! I can tell you it is going to rain in 3 days time - part of the reason I don't want to come back!! You could try staying at alternate days old/new for a bit and see if you can smooth that feeling out a bit.

It is a bit manic isn't it? Keeps me out of mischief though ;)

Krazykat26 profile image
Krazykat26 in reply to PMRpro

Thank you. It's been chucking it down here all day n I've had to out for blood test in the wheelchair pushed by soggy husband...holding up an umbrella etc etc. I feel like I been on an assault course!! I'll stick with it n see how I go. Oh yes it definitely keeps us on our toes..think my adrenals have just said..hang on a minute..what's she doing?? 😹💜🌈😽😽Xx

PMRpro profile image
PMRpro in reply to Krazykat26

Oh bleugh!!! It is so unfriendly to force wheelchair patients out in those conditions for blood to be taken. Here the equivalent of the district nurse would be sent to take it at home - though then the poor patient is responsible for delivering the tubes to the hospital!!! With a car it is easier - park at the train station almost on the platform but since Covid you don't get to use the back door to get to phlebotomy! Have to walk down to the front door for screening - 100 yards or so instead of 15 yards in the rain between lifts ...

Krazykat26 profile image
Krazykat26 in reply to PMRpro

It's a case of no bloods no drugs for me.. Methotrexate in my case n hydroxy of course. Still it's done now..I can rest n recharge my batteries 😴Thanks again Pro 🤗💜🌈😽😽xx

Hi Stillsdisease A great read. I've just watched ALICE of Pain on BBC I player. Amazing programme, I think we can all relate to the people who took part in it.

Sending hugs to you 🤗 ❤

JCZW profile image
JCZW in reply to JCZW

Should say A Life of Pain.

stillsdisease profile image
stillsdisease in reply to JCZW

Thank you, I’ll watch that soon.It’s the unremitting side of pain rather than the intensity of it, just one day off would help.

Hi Stills. Very good article. I have a spinal problem that is unrelenting pain along with lupus. Currently take gabapentin, aspirin, Antihistamine and other things for lupus. It

Would be very effective for chronic pain patients to have access to support groups / talk therapy is great benefit. I forgot to add I have Erythromyalgia which I take off label

Antidepressant along with asprin. My point is I know I would benefit from a group; but I would still require my meds. Currently exercise every day and eat anti inflammatory diet. It helps but like some of the folks interviewed it’s just not enough. Sometimes it’s easier to just stay home and isolation isn’t the answer. Thx for a good read Titters

I think many people might be helped by cannabis. It has a lot of useful properties, and it is about time it was prescribed for medicinal use.

Krazykat26 profile image
Krazykat26 in reply to Treetop33

I agree Treetop 🤗I was chatting with my friend about this recently..she has progressive MS. We've discovered that there is a private clinic in Harley Street no less called Sapphire Medical. They are doing a lot of research into medical cannabis too..so maybe it won't be too long until it becomes available to us. 💜🌈😽😽Xx

Treetop33 profile image
Treetop33 in reply to Krazykat26

Here's hoping, but it would be much cheaper to get the pure old fashioned stuff by decriminalising it.

Krazykat26 profile image
Krazykat26 in reply to Treetop33

Again totally agree. It would be more natural than many of our pain relief meds too 💜🌈😽😽xx

Thanks for posting Stills 🤗Very interesting I agree 💜🌈😽😽xx

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