Radio 5live....now !

[bones-bones]

Discussion on Sjogrens with Dr Elizabeth Price.

[Hidden]

Here's a link someone from this HU kindly posted me by PM. It's a really good item - so helped me to make some more sense of the Venus business and the vegan diet. I think Dr Price sounds amazing. So wish she was my rheum - although mine seems pretty good but not in Dr Price's league on Sjögren's. X

"Caught Dr Price speaking on our local radio this evening - she starts speaking at 1:24:24

bbc.co.uk/programmes/p057t2...

bbc.co.uk/programmes/b08xy7sd

That's the link for yesterday's 5Live Special Report - you need to scroll forward to about 2 hrs 36 minutes - it was about the last 20 minutes or so of the programme."

[bones-bones in reply to Hidden]

I am lucky....she is my Rheumatologist but possibly not for much longer. It's a real daytrip to get there so I may regrettably have to find somewhere nearer. We'll see.

[Hidden in reply to bones-bones]

Well I do hope the programme made you feel that your Sjögren's is just as serious and debilitating as any other rheumatic disease after your comment on your last post? X

[bones-bones in reply to Hidden]

Yes I suppose the problem is still that no one has a clue what this strangely named disease can do to you.Before I was diagnosed I roughly knew what Lupus was but I'd never heard of Sjogrens. But yes I will try to get a grip. I belong to a small ....about 8 on a good day...support group which is great. We all seem to have different problems. I don't really have problems with dry eyes or mouth but several really do. We laugh a lot which is always good.

Sleep well !

[Hidden in reply to bones-bones]

Well you are at least at a heck of an advantage over me then - I know no one else with any rheumatic diseases locally apart from my friend who talks about her Sjögren's like it's a death sentence - when she mentions it at all that is. Actually I think I've inadvertently done a bit of a Venus on her because I try really hard to keep going with my life where she just takes to her bed for days on end and was forced to take early retirement on grounds of ill health a few years ago- but she is 10 years older than me and has Addison's and osteoporosis too. But she will suddenly text me and say "I can't swallow is this normal?" Or "my eyes are so bad I can't come over for dinner with you as planned". I try not to let on how exasperating I find her refusal to join forums or learn more so she can manage it better. Her eyes are exactly same amount of dry as mine but she takes Amitriptyline and, prior to meeting me she had got used to telling friends about her rare eye and mouth disease called Sicca Sjögren's - so I've rather stolen her thunder! I don't think her Sjögren's can be that bad because our rheum only saw her once and said there is no cure just topical meds.

You also have Dr Price closer by than I do I think (Scotland) and you do have a small group to talk to at least. There are no groups in my area and I don't think I could start one as I have to focus all my very limited energy on my work.

But I think that's what came over in this radio 5 programme - the fact that every person seems to have this wretched disease so differently. This thought reminds me of my brother in law telling me his mum joined a Parkinson's group and only went three times because she couldn't find even one person who shared her major Parkinson's symptoms and had nothing else in common at all with anyone!!

The young woman judo athlete with Sjögren's was very articulate. Like Venus, she has benefited from strict veganism but then she was vomiting 15 times a day and collapsing frequently. They only discovered that Sjögren's was causing her awful GI symptoms by fluke - otherwise she's still be undiagnosed because her age and symptoms meant that no one remotely considered Sjögren's.

My great optician says that it's all just one huge spectrum and they should really just name each person's rheumatic disease after each of us - e.g mine would be Twitchy's Disease or TTD! His wife has MCTD and works with him. She's lovely but manages to get by with only Nifedipine for her Raynauds. I told her this makes me feel like a traitor to myself for taking so many powerful meds but she sweetly said no not at all - she's just incredibly stubborn and refuses to give into medication that's all. X

[Fennella02 in reply to Hidden]

I listened to it too - it was fascinating and Dr 'Liz' Price sounded like a really lovely lady.

Your opticians wife sounds very like my father (younger, probably?) and this rather cavalier approach has cost him most of his sight and mobility. I hope she has better luck than him.

I know only one other person with lupus but the diagnostic title is where the similarity ends. Xx

[Hidden in reply to Fennella02]

Hi Clare. Are you back from your holiday and if so how did it go?

Yes i have to say that, having been an ambassador for NRAS for 3 years previously, having a disease title in common is quite a different thing to having a disease in common. I seem to have much more in common with many people here than I have in common with those with RA. I can also say that I've had a lot in common symptom wise with my sister's oldest friend - who has very advanced MS. And also was able to speak to my sister's mother-in-law about her burning feet empathically - and she has Parkinson's.

I used to sit around a boardroom table with my volunteering colleagues with various degrees of erosive RA and wonder (as I'm sure they wondered about me) how on earth to relate to what was being discussed re musculoskeletal disorders. The only things most of us had in common was Hyloforte drops for dry eyes!I told my rheum that I felt a fraud being there and he said that's because I had the most autoimmune presentation of this disease without any signs of musculoskeletal change usually associated with Rheumatoid. This wasn't very consoling really - and he wondered why I found his diagnosis so hard to accept??!

Your poor dad - I think he's of that generation where they are deeply suspicious of all drug interventions. And yes my optician's wife is about my age I think. I must say I couldn't have a responsible job and stand up a lot like she does so I can relate to this resistance to taking meds all too easily I'm afraid. For all she has had mctd for a long time she seems to manage it very well without drugs from my perspective. She doesn't even see a rheum having discharged herself from rheumatology years ago?!

I'm lying here in bed with both ankles and feet and wrists and knees all screaming with bone, nerve and tendon pain (I think). It's the kind of insidious and invisible pain that a naproxen might help with but I'm having bloods done at 10.20 am and anyway I'm horribly suspicious of pain meds and impact on my guts and IBS-c! "Avoid avoid avoid!" says the inner dalek Xx

[Fennella02 in reply to Hidden]

Miserable for you to be awake in the night with such grinding pain - were you worried that the naproxen might affect your blood test?

I had my bloods done this morning too - they had been sliding over the previous months. The surgery has just phoned with the results - HB up to 87 and WBC up to 3.2! My crp has also nudged up from 1 to 13 which I consider inconsequential but could possibly indicate a minor virus which in turn could possibly have raised the WBC? The ESR machine is broken.

It's so nice to be back from the heat. It's very charming out there but I don't plan to be pressured into that kind of holiday again.

I hope you sleep better tonight xx

[Hidden in reply to Fennella02]

Glad to have you back here Clare. Interesting to know whether or not your normal WBCs relate to slightly elevated CRP or not. I didn't take naproxen because I was getting thyroid bloods done as well as usual monitoring - and didn't want anything at all to skew them I suppose. Also naproxen, along with all pain meds, screws up my tummy even more than it's screwed up already. I guess pain meds are just not part of my thinking these days. I just resign myself to it - lie there and try to breathe deep and focus on happy things. X