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Advice needed as I just despair with my asthma!

Looking for some advice/friendly virtual ear!

I’ve had two attacks that have both ended up with treatment by paramedics and hospital this week, one on Monday and one today. I regularly take my meds, I’m on pred from the hospital, I try and do all I can to help myself and there just seems to be no rhyme or reason to why my asthma is bad. This pretty much happens every month/two months but doesn’t fit into the usual pattern of my hormones affecting it. It used to be that I was bad once and then I’d be fine until the next month but now I keep having several attacks in a week and I’m just at the end of my tether with it.

Maybe that’s just how my asthma is but surely something must be causing it?! It’s really starting to get me down, my ribs are so sore, my arm aches as the nurse pressed on my cannula whilst transferring me to the hospital bed 😱 and it’s taking its toll on me physically, mentally and emotionally.

Any advice?

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There are two things you can do. One see a McTimony chiropractor who can help with over contracted rib muscles and other things which are causing breathing system overload. There is something called stress breakdown point. Just below the stress breakdown point the system will function albeit badly. Just above the stress breakdown point the slightest increase in stress will cause everything to fall apart in totally unpredictable ways.

Another thing to do is to see an Alexander Technique teacher who can help you develop better muscle behaviour and better posture. This will reduce stress on the breathing system and reduce the stress so that it is not near the stress breakdown point.

An I accurate I do not know. Only you can determine this by investigation.

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I’ll look into that, thank you.

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Oh dear! I'm so sorry you're having such a rough time. I don't have any answers really, but try to spend some time with your consultant and take a list of questions/possibilities with you to discuss. I do know that you can get into a vicious circle with this; so being ill makes you feel down and feeling down makes the asthma worse. The only thing I can suggest is patience. Relax into being ill, being looked after, like a Victorian invalid, and listen to music you like (perhaps not heavy metal) and read books you like, even if you've read them before. Try audio books if you don't have the energy for a real book. I am sure you'll get better, but it may take a while. Good luck!

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Thank you. I usually write down what I want to ask my consultant before I go but I never come away feeling completely satisfied I’ve got the answers I want as I know the time they have in appointments is limited.

Being patient isn’t my strongest point 😂😂😂 I get so frustrated with my asthma as I just find it so restrictive when it flares up. It’s almost as if you start to feel better and like you’re doing well and then your asthma’s like, ‘oh no, don’t be forgetting about me now, don’t get complacent’ and it rears its ugly head! 😂 I’ll try what you suggest though. I’ve been having lots of hot baths as I find them relaxing and it temporarily numbs the aches in my ribs. I do think I need to adopt the Elsa approach though (as my mum calls it) ‘let it go!’

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Have gone through tough times with my asthma. Just getting over flare up at the moment. Just go with the flow. When I had my last check up with respiratory consultant he said that I was doing far too much.

Other advice he gave to me

Pace yourself

Be able to say no

Do not be a people please

Take responsibility for your own health

The flare up I have at the moment is as a result of picking up strain of flu.

I don't make any commitments during the winter months. Hope this helps

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:( really feel for you as I know how hard and relentless it can be! I wish I knew something helpful to say. I think you mentioned at one point that you and/or cons were considering referral to a specialist centre? Sounds like the time has come to push for that now if you haven't yet - it's not just about the individual cons but they just have more resources and a whole team. Can't promise a miracle cure of course but it might help with some aspects and make the whole thing easier. They also often have health psychologists attached which I personally have found helpful (the first professional person ever to acknowledge that the system can really chew you up, never mind the actual physical bit! Last time I saw her she compared it to an athlete having a sports psych to help equip them for challenges).

You've probably already called them but maybe the AUK nurses will think of something as well if you talk it all through?

Hope this is vaguely useful even if just to commiserate, and agree with the others to take it easy though I know how frustrating and boring it gets just resting and not doing what you feel like you *should* - I believe you're a similar age to me and I so often feel annoyed that I'm missing out and not doing what I could be or just getting on with life, even though I know it could be worse.

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Yeah I’ve been told in the past I do too much to try and help myself, bizarre! I guess there’s a fine line but what would they prefer we do?

I do need to learn to say no to people and think of myself more, it’s just so difficult with work not to commit to things especially when I’m the only person that does my role. Luckily work are very understanding with my asthma though.

Hope you feel better soon too 😊

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Thank you. You just replying and saying that you get it is helpful, trust me 😊

Yeah I think you’re right, I’ve got an appointment with my consultant at the end of the month and I think I need to ask her about the possibility of having a neb at home, seeing a hormone specialist and getting some kind of emotional support as this is the bit I tend to struggle with more. I know my body will fix if that makes sense? But picking yourself back up mentally and emotionally just seems harder.

Totally get what you mean, I’m 32, nearly 33 and I find it difficult not to get disheartened when I see couples on social media going out for lovely walks in the crisp winter air and I know deep down that’s just not practical for me, unless I trade my boyfriend in for a paramedic 🤣🤣🤣 I said to him (my boyfriend, not the future paramedic 😂) that the things that keep me going/sane, make me happy like work, choir, drama, dancing etc. and that make me feel ‘normal’ I can’t do and I think that’s what frustrates me. I do know I could be a lot worse off but in my little world it kinda sucks 😕

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Glad it was helpful :) weird asthmatics unite! I know you know the frustrations of being a unicorn as well as everything else and yep I find it helps when someone gets that.

Like I thought, you're a very similar age to me and it's just that - the everyday things that I used to do, even just thinking oh I'll go for a wander round the shops after work or at the weekend, or plan xyz - but some scent in the wrong place or a weather change can screw that. I'm worried about planning things in case I can't do them, which I never used to be but I've been caught out quite a lot now by lungs and I feel I'm letting others down as well which is hard and makes me not want to eg do more music. I've never been a hard party type but definitely would like to do more so I really get what you mean there!

Maybe you could persuade your boyfriend to retrain as a paramedic? ;) Hope you get somewhere with the neb - I know the arguments against them but for me it can help to deal with scent triggers without ruining the rest of my day, when I've had access to one. I may be closer than I thought to it so crossing fingers for both of us - might be worth outlining your arguments in your head so cons doesn't just say no based on the usual reasons.

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😂 maybe we should start a support group with that name 😂 I might put on my sheet that I’m a unicorn asthmatic (jokes) 😂 🦄

Yep! It’s so frustrating and as I keep trying to explain to people, as you don’t necessarily think of asthma being debilitating, it’s all the little things and the knock on effects; the aches in the ribs, looking like a pin cushion, being more susceptible to heartburn and ingestion as the meds thin the lining of your stomach, the list goes on! It’s all the little extras on top of dealing with the ever so small problem of not being able to breathe! 😂

Yeah, he feels faint and sick at the sight of needles, as I discovered when he quickly exited the room when I had a blood gas test, so I’m not sure he’d make the best paramedic 😂 bless him.

Definitely, while it’s all fresh in my head and all my frustrations are there, I was going to do a list tomorrow as the neb head fog is starting to lift!

Thanks for cheering me up xxx

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Fellow unicorn here 🙋‍♀️🦄😂

Sorry your having a rubbish time, unfortunatly i have no practical advice as im in the same boat. Even my dr calls me odd! I feel for you as i have no specific reasoning to my asthma either and often present in weird and wonderful ways 😂. Hopefully you and your consultant can find a combination of meds that work for you. I get your frustration as im 29 yet feel about 90!

Be kind to yourself and never feel guilty about needing to take time out for you, both for your physical and mental health. Fingers crossed you feel better soon.

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Thank you, it’s so reassuring just to hear that. When I think about it logically, I know I’m not the only one who presents in weird and wonderful ways but sometimes it can feel like no one really understands and coming on here always helps 😊

I thought we’d cracked the medication but maybe it needs tweaking. I find my spiriva hard to take when I’ve been bad as it’s in capsule form and you suck it in through the inhaler, old school ventolin style!! I always seem to respond to the atrovent nebs better or the combination of that and the salbutamol so might be worth exploring that with her.

I know what you mean! My ribs are that sore it hurts to life the kettle and I’m sure if I could see myself I’d laugh at how pathetic I look! 😂

You’re right, we put our bodies through a lot and it probably takes more of a toll than I realise. I’d love to understand more why my ribs get so sore, I’ve always just known that’s what happens if that makes sense but never really explored why, although I’m guessing it’s the muscles working overtime. My arms also ache from being cannulated which I’m not sure if normal but then the nurse did press on one 😱 (peel me off the ceiling moment) so that probably didn’t help!

Thank you all for your kind words and for cheering me up, you really have lifted me out of feeling sorry for myself (I’m sure the pred is half to blame) much love xxx

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Just quickly - sounds like you're on the Spiriva Handihaler which did nothing for me. Now on Respimat which I thought wasn't working but the GP surgery messed up with a prescription and I really noticed not having that! Ask if you can try that instead - soft mist should be easier. I also find atrovent nebs help.

Also my chest gets really achy- before bad attack in Oct I was waking up.with it aching every morning and the .morning after I came out of hospital could hardly move first thing! It seems to have become another asthma thing though don't always get it.

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I’ve written that down on my list of things to ask the consultant.

I’m now experiencing really bad aches in my lower legs and just generally feel weak and drained. I’ve had side effects like this before but never this bad

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Probably been asked before but how are your Vit D levels? I've been deficient before and it made my ribs and leg bones really ache. If you don't know levels are ok maybe worth checking and/or using a supplement.

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The consultant has checked them before and I take vitamins every day. I wondered if it was low magnesium or phosphate levels as a result of the medication?

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Could ask to have those checked? Also how recent was the Vit D levels checking as it can drop especially in winter. You could ask GP if not due to see cons for a while.

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They haven’t been checked since the summer so will ask my consultant at the end of the month when I see her to check them again. Feeling less achey after a homemade banana and orange smoothie and a hot soak in magnesium salts. 😊

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hello sending get well soon message, I suggest seeing a chiropractor, sounds like you are suffering from stress, ask the hospital for breathing exercises and ask your doctor if they can book you into see the physio specalist.

Good luck x

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Thank you. I’ll enquire as the respiratory physiotherapist I saw before was really good.

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I eventually ot fedup with being given the runaround with my local hospital, who were none too keen on exploring why i was suffering so much. Eventally i asked my doctor to refer me over to Southampton who are an international centeof excellence for Asthma. They tested me, found my triggers, then worked through all sorts of medications untill i found what suited me. I use montelucast, as well as a relvar inhaler and a steroid spray which goes in to my nose. Doing fine now.

Good luck. Xx

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