Interesting read here, sorry it’s not a link but a screen shot was the was the only way I could get this here.
Chronic pain: Interesting read here, sorry it’s not... - LUPUS UK
I think this is the link:
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 ..."
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
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
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
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 ...
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 🤗 ❤
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.
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
Thanks for posting Stills 🤗Very interesting I agree 💜🌈😽😽xx