Asthma Denial : Apologies in advance... - Asthma UK communi...

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Asthma Denial

Elly1970
Elly1970

Apologies in advance for the long post.

Has anyone else been in denial on how bad their asthma is. I knew my asthma can be really temperamental, but not having the usual wheeze and maintaining good sats even while having a severe attack and even sometimes feeling a bit of a fraud.

So today when I went for a follow up app with my resp Dr he told me that I have severe allergic asthma /brittle asthma and that he is going to refer me to an asthma specialist with a view to have xolair injections but in the meantime putting me on a maintenance dose of pred to see if it helps.

I can't believe how emotional this has made me feel 😭🤢😠😮

7 Replies
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Yes Elly I know exactly what you mean!! If I pretend it’s not too bad then it isn’t!!

Sadly, I’ve had my worst year ever with 4 admissions and taking a v long time to recover from this last one!

Keep smiling

Liz x

Some people using Xolair have had a severe, life-threatening allergic reaction either right after the injection or hours later. Allergic reaction may occur even after using Xolair regularly for a year or longer.

drugs.com/xolair.html

Worth seeing an Alexander Teacher and a McTimony chiropractor to see if you have tight rib muscles. Medical profession know about drugs, know about allergies. Know very little if anything about how the whole body system affects breathing.

Worth investigating to see if there is possible benefit in improving posture and muscle control. The first international conference on fascia was at Harvard medical school in 2007. Your resp Dr is unlikely to know anything about the subject which has an influence on breathing well.

You say: "I knew my asthma can be really temperamental". The temperamental bit may be lack of muscle control.

EmmaF91
EmmaF91Community Ambassador in reply to johnsmith

Yes xolair may result in anaphylaxis, however that it very rare and usually happens in the first 1-4 injections, after that you’re more likely to get a rash, or hives.

At a specialist hospital, you get seen by most departments, including S&L and physio who look for breathing dysfunctions & VCD. Yes asthmatics can develop a dysfunctional breathing pattern, but that gets picked up on and treated prior to further medications (ie xolair) being tried. If this is the case than maybe a musculoskeletal expert will help to stop the attacks (chiro, physio, osteo etc).

But I challenge you to find anyone with any breathing condition (including someone with a cough or cold) who doesn’t have tight intercostals, diaphragm, anterior throat muscles etc, and in a chronic resp disease patient they will be bad as a consequence of the struggle to breathe! Yes, improved posture and relaxed muscles may make them feel better and physically recover quicker from an attack, but it will not stop an attack happening in an uncontrolled asthmatic.

As an osteopath I understand your line of thinking, as if you relax the muscles and calm the SNS then, the body will calm down and have less attacks etc, however as a severe, uncontrolled asthmatic I know that this isn’t the case! I should imagine that any research done into asthma (anecdotal or study) was done on mild to moderate controlled asthmatics!

Asthma is a narrowing of the airways (bronchi down) usually caused by an irritant (internal or external), so manual therapy will not affect IgE levels, one of the contributing intrinsic factors for allergic asthma - it’s not anything to do with muscle control or lack of!

Uncontrolled/severe/brittle asthma is just temperamental, as there is often little we can do to manage it ourselves at home meaning we often need ‘extreme’ treatment at hospital or a lot of steroids to calm things down. Complimentary therapies have their place next to conventional medicine, not instead of especially while things are still being assessed! Yes some indiviuals may find it helps but others don’t respond at all and others still may find a slight worsening of symptoms after treatment. It’s not your job to put people off conventional treatment by scaring them with a reaction which happens <0.1% of the time.

I should point out that chiro (like osteopaths) are not recommended by NICE for asthma treatment as nothing is proven, and there’s a lot of research that disproves anecdotal evidence (nhs.uk/conditions/chiroprac...).

I guess what I’m trying to say is maybe this post would be better in the community as a whole rather than as a response to an individual asking for some support with a new diagnosis. This way you can voice and explain you POV to everyone and get their opinions back, or maybe respond in a convo about alternative therapies/treatments out there where is could be an option for someone asking about them.

johnsmith
johnsmith in reply to EmmaF91

Thanks for the reply.

You say: "there’s a lot of research that disproves anecdotal evidence". Research actually does not. The research tends to be statistl and not qualitative. FM Alexander who developed the Alexander technique was used by the medical profession because of his skill at treating respiratory conditions. There are lots of articles in the BMJ before 1950 on this.

Chiropractic can be helpful because of release of tight rib muscles. Dig deeper into the research and you will find nothing about muscle skeletal muscle tightness.

You say: "Complimentary therapies have their place next to conventional medicine, not instead..." I agree with this. Complimentary therapies are sometimes the only therapies because of the side effects of conventional medical therapies. Everyone must do there own investigation. Things tend to work differently for different people. Partly because the cause for a particular diagnosis may be different.

You say: "Asthma is a narrowing of the airways (bronchi down) usually caused by an irritant (internal or external), so manual therapy will not affect IgE levels, one of the contributing intrinsic factors for allergic asthma - it’s not anything to do with muscle control or lack of!."

If I can narrow my own airways by faulty breathing so can anyone else. When I am having a bad reaction to a nasty chemical in the air I have a choice to how I react to the nasty chemical. I control my breathing. It does not stop my difficulty. It stops how bad the difficulty is.

If I can impede my breathing by raising my shoulders so can anyone else. I can over tighten my chest by walking in a particular faulty way. All these issues have a bearing in Asthma. Surprise these issues are not known to the medical profession. They know about drugs because the pharmaceutical companies spend a lot of money ensuring doctors know about their products. Lots of grants are available to research chemical imbalance in asthma patients. There will be drugs which can be sold to correct the imbalance. No money is available to investigate how muscle imbalance can cause elevated chemical imbalance.

You say: "Uncontrolled/severe/brittle asthma is just temperamental, as there is often little we can do to manage it ourselves at home" There is a diagnosis. The diagnosis does not look at causes. The human body is a series of engineering systems. The breathing system is affected by other systems that are also running in the body. An engineering system has a stress break down point. Below the stress break down point the system functions albeit badly. Above the stress break down point the system breaks down with a small increase in stress causing break down. By keeping the system below the stress breakdown point the system functions. Complementary therapies help keep the system before the stress breakdown point.

Look up Fascia. This is a very interesting subject. The first international conference on the subject was in 2007 at Harvard medical school. This is a subject that is not in the understanding of many doctors. Because fascia was the stuff doctors threw away when they did their medical dissections.

It boils down to people must investigate. Read "Rigor Mortis" by Richard Harris. It was a book that Nature Science journal has recommended. There is a big problem in scientific research at the moment. Much medical research by respectical scientists has been found to be wrong and not reproducible. The patient pays the cost for this.

I agree with you the issues are difficult and much information going around has a lot of inaccuracy to it. It is known that some treatments actually cause the issues that the treatments are supposed to prevent.

I hope I have not been too long winded.

Gareth57
Gareth57 in reply to johnsmith

I fail to see how raising your shoulders to narrow your airways can be compared with a trigger/allergy induced asthma attack. One can be cured by lowering your shoulders the other cannot and you may be completely ignorant of the cause of the attack and therefore have no idea of how to get away from said cause to start a drug free recovery.

johnsmith
johnsmith in reply to Gareth57

Thanks for the question. I am not talking about cure. I am talking about management.

The breathing system in the human body is an engineering system. As such it has a stress break down point. The higher the stress the nearer you are to the stress breakdown point. When the stress to an engineering system goes over the stress breakdown point it breaks down badly. When the stress to an engineering system remains before the stress breakdown point it still functions.

A trigger/allergy induced asthma attack when the system is just before the stress breakdown point can be quite catastrophic. A trigger/allergy induced asthma attack when the system is way below the stress breakdown point can be non problematic.

So by looking for ways to reduce breathing system stress to way below the stress breakdown point reduces the problems of a trigger/allergy induced asthma attack.

Have I explained my reasoning? This is why some of the things i suggested can make a difference. They are not cures. They are things which aid the management of a condition. Although I accept it is not easy to explain some of these things in a way that is easy to understand.

EmmaF91
EmmaF91Community Ambassador

I know what you mean!

I was bad for so long before I got referred to a tertiary hospital that my body adapted and I could function ok at 50% of my PF, so wouldn’t get help til I felt really bad! This ended up in a stupid number of admissions and a&e trips where I was classed as having ‘life-threatening’ attacks. Now I’m slightly more controlled I feel I fraud when I go in with a *only* ‘severe’ attack 😳😕.

The 2 biggest emotional shocks I’ve had are finding out that last year I was about 1 minute away from being intubated, and this year finding out that at my new local hospital (moved house) I probs would have been to itu/hdu atleast 5 times under their criteria 😬😣😓. It’s ok to to be upset when these things hit you! Let it out but also view it as a method to help you, as they will also look at you as a whole, not just your asthma (ie breathing dysfunctions, vcd, reflux etc), as well give you more options to try!

I also have severe asthma (both allergic and eosinophillic) and have tried xolair injections. I’m about to switch to mepo though cause I started getting hives and so they stopped it (though tbh I expected to eventually get an issue as it always made my eczema worse 🙈). I know people who have been on it for years with no issues tho and for them it’s life-changing!

Hope you start to feel better soon and that the resp specialist hosp has some ideas for you! X

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