New possible diagnosis

[haggisplant]

Hello,

After a terrible time battling chest infections for over 2 months now (two lots of steroids, two lots of abs, X-ray, multiple GP visits) I'm being given a trial of medication to see if it helps / test peak flow after 6 weeks. (Brown and blue inhalers).

I haven't fully got my head round what asthma is or the symptoms snd what to look for - possibly as I'm pretty used to these lingering annoying coughs, don't tune into the symptoms, and an used to feeling rubbish, though this has been significantly worse than usual.

Some questions!

1. How likely is it/ do people have normal low peak flows? Mine keeps hovering around 350-70 though hit 390 after salbutamol hence brown inhaler trial.

2. With a lower normal general peak flow than average, could I be more prone to annoying coughs?

Whilst I don't want this to be asthma, 390 felt much nicer and the nurse hoped I'd reach 400-420 after 6 weeks of the brown inhaler.

Brief intro - I'm 39 mum of one and had some health issues the last few years linked to thyroid and hypermobility though I'm now wondering if my lungs might be a contributing factor.

Thanks!

[Hidden]

'Normal' peak flow rates vary from individual to individual (as, of course, does asthma). My own peak flow is at the low end of what is considered acceptable for someone of my age, gender and height. What is important is that you get to know what is normal for you; once you do it can act as an early warning system for your asthma. I can say that even with a slightly low peak flow rating I don't believe I'm any more prone to annoying coughs than any other individual with moderate asthma though, inevitably, I am more prone to them than the average non asthmatic.

Like you, I have hypermobility issues (confirmed as having joint hypermobility syndrome eighteen months ago). There are plenty of asthmatics who are not hypermobile (including my younger son) which would suggest there is no connection. That said, I too have wondered whether being hypermobile can cause additional problems for those who also have asthma. My own version of the latter condition fits every criterium for 'well controlled' with one notable exception: I have problems when I do aerobic exercise and nothing seems to help with that (nor has it ever done so). Those medics I have spoken to on the subject of a connection between the two (including a consultant in respiratory medicine) think there isn't, but I really don't think there has been enough research on the topic to say whether there is or not.

Hope things continue to improve for you

[haggisplant in reply to Hidden]

Thank you for your very informative reply! I'm sorry to hear about your hms. It's quite a challenge at times!

Regarding the hypermobility; I seem prone to getting weak and loosing weight (muscle mass) quite quickly. Could just be me but I wondered if mild asthma not controlled could be a contributing factor. Low thyroid certainly is and being inactive for too long due to fatigue.

I spent many years (prior to diagnosis with hms and prior to pregnancy which triggered pelvis issues and the hms diagnosis) improving my fitness levels (and noticed I was less prone to coughs actually) so don't have an issue there and really need to keep strong and active for my back. I'd just begun to improve before I was hit with the infection that seems to have triggered it all off in Nov.

Of course it could be that I'm not asthmatic but the infection caused similar issues. Though infections have been bad and lingered for some time over the last few years.

[Hidden in reply to haggisplant]

I'm not sure that uncontrolled asthma would necessarily lead to a loss in muscle mass (other than as a result of not being able to exercise because of it, of course). Certainly uncontrolled asthma can be tiring, so it would cause a level of fatigue. Like you, the periods in my life when I have been most active and doing the most exercise (I used to do a lot of ballet - not on a professional level, I hasten to add ) also resulted in better all round health - it was extremely unusual for me to get a cold, for example - but that would be true for the population in general, regardless of asthma. Ballet was ideal for me because although there are sections of a class that involve some aerobic exercise, it comes in short bursts - which I could cope with. From a hypermobility point of view it was also fantastic because it was great for improving muscle strength. I was more prone to injury than others in my class, but as I got stronger that improved as well. All unwitting, I was helping my body to cope with the suppleness which I have had all my life. It was when I stopped that I started to get problems for seemingly no reason at all. I now do one class a week, and I also do Pilates. The diagnosis of HMS explained a lot of previously unexplained health issues that I have had throughout my life. Asthma was the one it didn't explain.

See what happens with the inhalers. If it is asthma, so long as it is controlled it is perfectly possible to lead a pretty normal life:-).

[TimeStillExists]

I was diagnosed about a year ago after having coughed so much that I was vomiting from coughing so much. Coughing is one of my only asthma symptoms other than a bit of a tight chest. My peak flow is around 450 usually, I know BMI and level of fitness have a role in how high your peak flow can get. Once your symptoms are in control your peak flow might be a little higher than what it is now, after my cough went I was sometimes about to get 500, at the moment with it being cold 430 is my average. I'm Hypermobile too btw!

[curiouser]

Hi there - I just wanted to say that I also lose weight very quickly when my asthma isn't well controlled - I think for some of us breathing and coughing can burn a lot of calories.

I'm not hypermobile - though oddly I got assessed for EDS the other day by a physio as I have very mild HM elbows and he'd noticed and put that together with my multiple fractures (I was seeing him after getting my arm out of plaster) and wondered if I had a HMS. I knew that I didn't have it but it was an interesting thing that he thought of it.

As for peak flow - a lot of it is technique. I used to play a brass instrument and have huge lungs relative to my size. I'm 39, female and tiny and I can blow near 600 on a good day and mid 500s most days. I think what they are looking for is a relative improvement in your PF - it should be getting better on the treatment if what you have is underlying asthma.

[Hidden in reply to curiouser]

I would have thought that at 39 a history of dislocations and subluxations would be more indicative of JHS/EDS than fractures. It's true that early onset osteoporosis (which does increase the risk of fractures) can sometimes result from having EDS but other things can cause that as well.

I'm envious of your peak flow. The highest I've ever been is around 440/450 (when I was in my 20s and 30s - I'm now in my early 50s) and I'm also on the small side (currently 5' 3.5" with a BMI of around 19.5). As I mentioned above, my PFR is now considered to be on the low side of the acceptable range for my age; this despite the fact that I did a lot of drama when I was younger (vocal projection whilst acting requires very good breath control:-)).

[curiouser in reply to Hidden]

Don't be envious of my Peak Flow - it causes me real problems in A&E. By the time I hit 400 I'm really struggling and at high risk of just stopping breathing (which does happen), but the staff go "Oh! 400! That's great - you're fine...!" - even if I've been shipped there in an ambulance by my own GP. It isn't til I see a Dr (usually a consultant) who can tell that I'm getting all that 400 from just the top of my lungs as the bottom halves are now silent that I get taken seriously.

I'm sure speaking for acting requires good breath control, but the main thing you learn with a brass instrument is how to time the coordination of movement of all your breathing muscles into the same microsecond - which of course is what peak flow asks you to do. It's like the difference between 'running' and 'sprinting' - in a sprint, the exact timing of every process becomes very important, which doesn't take away from the efforts, skills or fitness involved in longer distance running.

That said, I've also got a huge FEV1 and total lung volume - despite being just under 5' and BMI 17.5. My lung capacity matches a 6 foot woman my age. I swam as well as a kid but I suspect it's largely just luck / genetics. I do appreciate it because when I'm well I'm really well.

The physio did know that I've had a few dislocations as well - but to be honest all were related to extreme forces, it's not like I pop out easily except for one shoulder that has been out a few times and is hence a bit loose. He said bones use collagen too (and I was seeing him following my 7th fracture in 2 yrs!) hence he was checking for EDS, but I think it was just a rule-out rather than something he expected. I was mostly just interested / glad to see it being thought about as I know it's a very neglected condition that causes all sorts of 'mysterious' problems for people who have it without a diagnosis.

[Hidden in reply to curiouser]

It certainly does. It was only when I first heard about it (and then was diagnosed with it) two years ago, that I realised that a lot of health issues that have cropped up throughout my life are almost certainly as a result of it. It was a bit of a relief to have an explanation to be honest.

Crikey, a BMI of 17.5! I'm surprised your GP - not to mention the asthma nurse - isn't (metaphorically) screaming. Mine get twitchy if I get close to 18.5 and I have been below that in the past couple of years, courtesy of reflux and what turned out to be oesophageal thrush - and very lacking in energy/feeling tired I was too. Having trained to teach ballet I'm very well aware of the issues surrounding weight, so I was not surprised at how lethargic I felt during that time. All athletes (and dancers are essentially that) know that they will not have the strength/physical fitness to perform well if they do not sustain a healthy weight. The one thing that was not affected during that period of weightloss was my asthma (thank goodness)

[curiouser in reply to Hidden]

Thanks! Yes - they would like me to get my weight up (closer to BMI 20!) to help my lungs as well as everything else and give me a buffer for infections when I lose weight quickly.

This is a good deal better than it was a couple of months ago when I was back under 16.5 - I really do feel it below 17, but seem to feel ok at anything over 17 - possibly I'm so little that the BMI calculation is slightly skewed. Once I get back over 17 I'm able to run, and this helps me to gain weight again (I only seem to gain muscle, not much fat) and then by 17.5 I can easily knock out 10 miles and feel pretty good. At 18 I feel amazing!

The GP does get twitchy below 17.5, but they're really helpful. Like you I've had the rampant candidiasis - which tends to make me lose weight. I'm type-1 diabetic which makes it quite difficult to put on weight - I can't just add in sugary drinks as I might have in the past. (Not that my diabetes is diet controlled like T2, but timing insulin for sugar in drinks is very difficult).

I was reviewed by the local CF team and they said that fat is an organ and it seems to be really important for the immune system that we maintain at least a little body fat, so that's what I'm trying to work on - without much success so far :/

[Hidden in reply to curiouser]

Now this is really interesting. Up until now I've not encountered anyone else who's had Oesophageal thrush. I came onto the forum about a year ago asking if anyone else had been diagnosed with it; my consultant gastroenterologist was blaming it on my inhalers (I'm on flixotide 250 and ventolin - the latter taken as required, which is not very often). He made it very clear initially that he would have liked me off them (he mentioned montelukast as an alternative) but backed down after a consultant in respiratory medicine made it clear that that was not an option; given that I've never had oral or pharyngeal thrush in my life, he was skeptical that my inhalers had anything to do with it. Has any suggestion been made as to what the cause was for you, and if you don't mind me asking, what medication are you on for your asthma?

I'm not diabetic, although it was one of the first things my gastroenterologist asked when he heard that I'd been diagnosed with gastroparesis a few years ago (almost certainly the hypermobility has contributed to its occurrence). Like you though, sugary drinks (in fact refined sugar in general) is causing issues - but in my case it is currently a major trigger for reflux. The reflux, thrush (which has recurred on and off since it was first diagnosed), and gastroparesis does make it hard to get the weight on and to keep it there. I've never got back to the weight I was two and a half years ago (I had a BMI of 20 - well 19.9:-)) and it took the best part of eighteen months to get to the weight I'm at now (which is actually a little down from 19.5 at the moment). So keep at it - you'll get there

[haggisplant]

Thank you for your replies.

It's interesting to hear if others who loose weight/ muscle so easily! I don't fully class myself as hms as I'm better if doing lots of different things including a bit of skipping and jogging.

Another question if I may - I've started keeping notes of symptoms and when I'm using the blue inhaler. One thing I've noticed is becoming very tired and then later starting to wheeze. The other symptom is the tight chest and then coughing. Sometimes I miss anything in particular and get into a bad cycle of coughing. Blue inhaler helps all - is the tiredness a symptom or a trigger? (Or both?!)

[haggisplant]

I'm stumped as to my exhaustion today but it just occurred to me that we had some work done on the boiler yesterday- I was coughing and wheezing badly all afternoon and used the blue several times. I'm wondering if it's a sort of 'hangover' from all that?

[haggisplant]

I have spoken to asthma uk now, I think I'm clearer. And was very breathless on phone - hadn't tuned into that symptom as its not constant iykwim? I'm used to constant symptoms with hypothyroidism!