better than the alternative, I guess....
Bittersweet: better than the alternative, I guess... - LUPUS UK
Bittersweet
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whisperit
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THANKS mike: LOVE it!
Just now, i had a cartoon-like experience that directly connected with your post:
as i was piling up my morning meds for the Big Swallow, i dropped one of my 4 brown gastro-res pred tabs on the kitchen’s pamment floor...looked down, glance around, couldn’t see it against the dark tiles...sunk to my haunches thinking: i’m not feeling like hunting for this...then i looked down between my knees and THERE IT WAS: OMG, i swear it was SMILING at me like a tiny brown emoji! I said to it: Hello my little friend! and picked it up gently...then i sat down to sip yet another EEN carton + glass of water and do the Big Swallow...and PING: in came the HU email notice of your LOVELY but SAD post....don’t know how i’d/we’d cope without a sense of humour...
Much of the time, i DO feel, my life IS a kinda sad cartoon.... 😘🍀
Ahh, those fiendish little pills. Or 'The Devil's Tic-Tacs', as I now call them (thanks to a user on another forum) . How are you getting on otherwise? x
OH YES: DT-Ts....PERFECTO! Am more or less “ok” THANKS: all the multisystem treatment plans really ARE helping as much as ever..... and am ALWAYS glad of your posts: your news means you’ve been on my mind a lot cause so much that’s happening with me is long term & chronic progressive stuff i’ve been warning them all about forever while they nod their heads sagely but go right ahead to, basically, mess up by underestimating my hyper-reactivity. Coming up v soon: CT Enterography to make up for the incomplete recording + retension of that video capsule endoscopy....BUT, for once, the hyper-reacs mean no swallow + IV contrast with it, so, of course, insights gleaned will be relatively minimal. Meanwhile am on NHS Crohns protocol EEN cartons A GO GO, hardly missing food at all EVEN though am cooking for Badger & various visitors.....essentially: i watch my life as if it’s an Animated Cartoon....so, THANKS again for your cartoon this morning XOXOXO
What a damn shame for you Mike. But re great cartoon - me too!
Relatively good 2 days pelvic pain wise and I’m pleased that this has stayed away (cooler weather, antibiotics, coconut oil?) - but now my whole body aches, awful sweats, and all I want to do is sleep. And I’m dead grumpy too! X
whisperit in reply to
it's a 24 hour tightrope walk, isn't it? x
in reply to whisperit
Yep. And tbh I’m never sure if I am actually over aware of every feeling or am blithely disregarding pain and sensory loss because I’m so used to it? Or whether I should fight the fatigue and attribute the sweats and groin issues to the weather or whether they are relevant to my clinical picture.
I recall getting a phone call many years ago from my old friend and practice nurse asking me if I was feeling as hideous as my thyroid bloods indicated I should. And being totally baffled as she said my Levothyroxine dosage must double over the coming weeks. My reply “well I’m always fat and tired l so no I haven’t been aware of any worsening?!” - so casually unwell in those days - never went to doctors or questioned why me. It just was my normal to be tired and sore and always had been really.
And yet if I try to explain this to my new medical team they just look sceptical, probably thinking “she’s just really idle!” just as my late mum used to say!
I’m guessing and hoping you at least have been sufficiently vindicated now that you won’t ever be fobbed off? I’m dreading man GP phoning on Thursday pm and telling me that MRI has shown nothing. I know this is a sad state of affairs to wish for something to show up . But nasty neuro letter and PIP decision coinciding earlier on this year have left an insidious feeling of self retribution which has weevled its way into my being! XX
Very true! Especially devil’s tic tacs...Have you had no return of the brief feeling of wellbeing and energy? 🙁 x
Well if it offers you any hope, my cognitive and mental improvement preceded my physical improvement - a quite sudden lifting of the awful debilitating fatigue so 🤞🤞for you too. I am attributing mine to methotrexate but it may just be time for a bit of remission - and definitely is for you too!
X
Did they get any further with the biological for you? Although I’m attributing my improvement to methotrexate, my rheumy and immunologist say it’s the magic rituximab. Worth a try if you maybe? X
Hope so - is it going ok side effect wise? I felt weird and a bit silly/ drunk on the azathioprine but have now realised that was the disease rather than the drug! X
Thanks for the cartoon. It was a good laugh--and I keep going on. Also, on a higher dose than ever of the devils tic tacs for peripheral neuropathy & cognative problems mostly around writing & speaking. Starting to feel some improvement in the neuropathic pain which is heartening. The tic-tacs may be making me more talkative, put perhaps too hyper and talkative. Also, my apartment is getting organized, duvets cleaned, & paper organized. Good for that. Writing a few words here is actually improvement. Even at my foggiest, I read things here and find so much of what people say helpful, even if I can't manage to put together a sentence.
Am vvv glad of your news, ann! And happy to know you’re feeling some improvements! And loving your reorganising! Reading your contributions always helps me too: am so glad you’re here 🍀😘
Thanks, Coco.
I went to town in cleaning, organizing & vacuuming, and since going from 0 to 160 so quickly, might be too much, I'm now recovering from my mad dash. But it is good just to get some of these things done for a change.
Hi there
Glad to hear of your 'slight' improvement of the neuropathic pain. You say you are on a higher dose of the devils tic tacs for that pain, can I ask which particular tic tac it is? I ask because this year I started with small nerve neuropathy in my legs and it is driving me mad. After a test my consultant set up in the Neuropathy dept at the hospital, where they gave me tiny electric shocks on the bottom of my legs, she said they hadn't shown up anything really and totally dismissed it. When I reiterated my legs felt as though they were on fire most of the time, with only a slight lessening of the burning, tingling sensations sometimes, she said and I quote"even if it is small fibre neuropathy, there is nothing we can do about it as it is not curable, the best you can do is to take Vitamin B Complex" and that was that. I was surprised at this because normally she is very good.
Since then it has got worse and my GP has prescribed Pregabalin 100mg capsules 3 times a day. These help a little but it doesn't go away. I would gave anything for something to actually take it off if only for a little while!
Hope you continue to feel better.
Trish
I started to reply and a paragraph in and it disappeared. Anyway, I'm taking 40 mg of prednisone for brain and neuropathic pain to see if I can reduce the inflammation in those areas.
There are things that can be done for SFNP, but because it is very expensive it is very hard to get in the UK according to reports and also in the US because insurance and medicare don't want to pay for it. Dr.Anne Louise Oaklander has a YouTube video on Small Fiber Neuropathy. She is finding a lot of people diagnosed with fibromyalgia have this. I read about the video, but haven't seen it. I've been following some of her studies. I know she is recommending a biopsy for SFNP, but if there is nothing for treatment, it may not matter.
I never took pregablin, but I did take gabapentin, a closely related drug. Originally I took it for migraine prevention. Recently for nerve pain. I'm not sure it worked for either, but when I stopped most recently, I realized it was really making my brain fog issues worse. Also, it can cause weight gain. But if it does work for you without bad side effects, that's great.
