Do you ever feel alone: I am so fed up... - Asthma UK communi...

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Do you ever feel alone

I am so fed up an confused. Resp nurses at hospital,consultant. Against gp,asthma nurse at gp practice. There is conflicting answers as what i should be on. Nothing at the moment is working and i'm heading for another chest infection. Who am i supposed to believe in

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Remember your not alone, there are a lot of people going through what you are. I'm feeling really frustrated too lately wasted a weekend reading through hospital letters looking for loose ends to try to figure a way of managing all the allergies.

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Agreed. Unfortunately that's the nature of asthma, you know your symptoms best and generally need to demand the medication that works for you. Fortunately there are lots of good resources online. I'd recommend learning how to group the drugs into their classes: SABA, ICS, LABA, leukotrine, and the much forgotten cromolyn/cromoglic acid. Realize that within a class you take them in the same way and they all do much the same thing only difference is your individual sensitivity. So you may not respond to one ICS max dose but need a quarter dose of another.

To sort it out you need about 2 pages of history starting from your first asthma attack and the first med you were given, how you did or did not take it and effect. My experience is most docs don't have time for 2 pages of history. It's sad but true, no matter the system.

I say your choices are treat yourself or keep cycling through trying to find nurse/consultant/doc that has interest in asthma and allergy, maybe has it themselves and is practical.

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I am sorry to hear you are feeling alone, having chronic conditions can be so horrible.

Have you spoken to you respiratory consultant about the fact you are getting conflicting advice from the asthma nurse and your GP?

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Not yet. Its near impossible to get a meeting set up, its usually his registrar. But am gonna have to be blunt with them an demand to see him. I sometimes think no one really knows what they are doing

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Definitely ask to see the consultant himself. You can ask to specifically see him/her when you go to appointment, tell the reception staff when they are checking you in that you wish to see the consultant specifically.

It is hard when nothing seems to be working and its so frustrating, and like you said feels like no one knows what they are doing.

I work in a hospital and see it daily and my heart just breaks for people because they just want to feel better and to know what is going on. Been in that position myself too.

But its important you let the consultant know all thats going on especially when other doctors are giving contrasting advice. Consultants while not infalible train for a long time to specilise in their field so they have a better idea then other doctors about their chosen speciality, but they need as much information as possible from you.

I hope you can get to see them soon and get sorted.

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ring asthma uk helpline they will listen to you and give you the time you need to talk. asthma.org.uk/advice/resour... Then you will not feel alone and have an excellent back up on your side. Remember to look after your mental health as well. We are not just physical but mental health. I am being a guinea pig on asthma uk 12 wk asthma support program. This will go out to all asthmatic in the future. Its week 4 and looking very good. You are definitely not alone

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I definitely agree about the Asthma UK helpline. They are a lifesaver to me. It is so hard when all the professionals disagree. Knowing that there is someone out there who understands makes such a big difference. x

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Best thing I did recently was joining

asthma org..support absolutely vital especially when anxiety kicks in and frustration over meds not seeming to work.

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Thanks, my next step is to get another opinion if this fostair doesn't work. I tend to feel theres to many involved at times cause they all have different ideas. Makes me feel like a guinea pig

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That is where I am...a third opinion next week ..another change in meds yesterday though my allergy doctor is trying hard to combat the effects of so much cortisone.I think it does help to know that others understand.

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The problem is that medicine is not an exact science . The causes and response to treatment in asthma patients can vary enormously . Often with medication it comes down to a case of suck it and see .

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It is conflicting, and the more involved the worse it seems.

I wish I had the answer for you, try and stay strong and go with your instincts (you are the best judge of yourself) and don't be afraid to ask the questions and tell them how your feeling x

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Going through similar thing...have allergic asthma,been on masks and cortisone,antihistamines 3 months now, docs keep changing meds to see which work....side effects really getting me down..you feel alone and frustrated but keep in touch with other sufferers for support...can you get another opinion?That is what my next step is.Good luck.

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