# Reducing/ giving up to improve your health?



## sarahale (15 Jun 2017)

I've been finding cycling a struggle for the last year or so. I've been a cyclist for around 6 years and at my best was doing around 200/250 miles a week and absolutely loved it. 

Then I just started getting really tired and out of breath very easily, I'm only 27 but just thought I was probably over doing it all so cut back to around 100 miles a week. The more I cut back the unhappier I got but I didn't seem to feel any better or more rested. 

Eventually I went to the doctors, had lots of tests all came back normal except a low heart rate. Now I know I'm healthy I'm pushing myself a little more again in the hope things will go back to how they were. 

I'm doing around 150/200 a week now and although I'm enjoying it some of the time, it's hard work, I'm very tired and I get out of breath quickly, I just don't feel like me, it's very hard to explain. I'm not sure if it's the heart rate or what but something isn't right but then all my tests came back great... 

In 3 and a half weeks time I have a long ride but after that I'm thinking of just knocking it right back to commuting only which is around 50 miles a week. But this makes me sad and I think I'll just get unfit and fat. Or do I stick with it and hope I just feel better.

I don't really know if anyone on here can offer any advice, or has been through similar and it's passed (I'd really love to here that!) Not really sure who else to talk to about this hence why I thought I would come on here.


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## Racing roadkill (15 Jun 2017)

It sounds like You're suffering from fatigue, due to over training. Winding your mileage and / or intensity back may help. I'd get checked out by a qualified medical practitioner as well, if I were you, just to make sure there's nothing more serious going on.


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## vickster (15 Jun 2017)

Try having a break and see if you feel better. Could just be overtrained or fatigued? Replace some of the cycling with another form of exercise like swimming or walking?

Or just slow the cycling down and enjoy a more relaxed pace?

If none of that helps, get a new bike for the undoubted placebo effect


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## HarryTheDog (15 Jun 2017)

Low heart rate is quite usual with a regular cyclist, by low how low do you mean? myself and a few people I know our RHR is in the 40's. Feeling unhappy not cycling may be due to you not getting your endorphin boost brought on by excercise. Feeling tired and out of breath could be your smashing it all the time. There could be medical conditions your doctor did not check for, when I was very overwieght and could not lose wieght easily but had a low heart rate I suspected low thyroid , got tested but no, I just ate too much. 
Could be other things like low hormone or certain vitamin levels or several other things.


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## Welsh wheels (15 Jun 2017)

150/200 miles a week is a lot. I do that some weeks and usually feel knackered afterwards. Certainly to stay fit and healthy you don't need to do that many miles a week. You won't get unfit and fat from doing 50 commuting miles a week, that's still a lot. You could cut it down to commuting and just one 'recreational' ride a week and see how you feel. There's no point doing lots of miles just for the sake of it, if you're not enjoying it. I haven't done as many miles this week as I do usually, and I can feel some benefits.


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## Tin Pot (15 Jun 2017)

In your position I'd look at changing up my cycling and training, the body doesn't improve if you're doing the same stuff all the time.

I'd also look at nutrition and sleep patterns, try to make them regular and supporting the exercise I'm doing.

...but then I'm training for events. I just think it could benefit everyone. 

My trainer has suggested I'm suffering from fatigue so I'm laying of it, a week later I get Achilles issues, so I'm definitely off it.


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## sarahale (15 Jun 2017)

Racing roadkill said:


> It sounds like You're suffering from fatigue, due to over training. Winding your mileage and / or intensity back may help. I'd get checked out by a qualified medical practitioner as well, if I were you, just to make sure there's nothing more serious going on.



Thanks, perhaps I just need to take it a bit easier I just find it hard to as I always want to be on the move! 

I've had blood tests, X-ray's, ultrasound on neck lymph nodes and ECG all back as good!


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## sarahale (15 Jun 2017)

vickster said:


> Try having a break and see if you feel better. Could just be overtrained or fatigued? Replace some of the cycling with another form of exercise like swimming or walking?
> 
> Or just slow the cycling down and enjoy a more relaxed pace?
> 
> If none of that helps, get a new bike for the undoubted placebo effect



I thought dropping to 100 miles was taking it easy but it didn't make a difference to how I felt. Perhaps 50 would! I walk and swim on the side too but not a huge amount. 

It has been a couple of years since I last got one, don't tempt me!


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## vickster (15 Jun 2017)

sarahale said:


> I thought dropping to 100 miles was taking it easy but it didn't make a difference to how I felt. Perhaps 50 would! I walk and swim on the side too but not a huge amount.
> 
> It has been a couple of years since I last got one, don't tempt me!


A couple of years?  That's long long overdue!!

Do you eat a good balanced diet and a lot? What blood tests did the Dr do? Do you feel worse at the 'wrong time of the month' or at certain points in your cycle?


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## sarahale (15 Jun 2017)

HarryTheDog said:


> Low heart rate is quite usual with a regular cyclist, by low how low do you mean? myself and a few people I know our RHR is in the 40's. Feeling unhappy not cycling may be due to you not getting your endorphin boost brought on by excercise. Feeling tired and out of breath could be your smashing it all the time. There could be medical conditions your doctor did not check for, when I was very overwieght and could not lose wieght easily but had a low heart rate I suspected low thyroid , got tested but no, I just ate too much.
> Could be other things like low hormone or certain vitamin levels or several other things.



It was 38 when undergoing tests. Doctors concluded I was healthy and just to see how it goes, perhaps if I did a bit less exercise it would be higher and then I wouldn't feel so groggy.


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## sarahale (15 Jun 2017)

Welsh wheels said:


> 150/200 miles a week is a lot. I do that some weeks and usually feel knackered afterwards. Certainly to stay fit and healthy you don't need to do that many miles a week. You won't get unfit and fat from doing 50 commuting miles a week, that's still a lot. You could cut it down to commuting and just one 'recreational' ride a week and see how you feel. There's no point doing lots of miles just for the sake of it, if you're not enjoying it. I haven't done as many miles this week as I do usually, and I can feel some benefits.



Good point, I think cutting back is the next step and see if that helps. It's just cycling has become a way of life, I won't know what to do with my spare time!


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## Welsh wheels (15 Jun 2017)

sarahale said:


> Good point, I think cutting back is the next step and see if that helps. It's just cycling has become a way of life, I won't know what to do with my spare time!


Are you in a cycling club? If not, consider joining one. It would make riding more interesting and they'd likely do social events outside of riding.


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## sarahale (15 Jun 2017)

Tin Pot said:


> In your position I'd look at changing up my cycling and training, the body doesn't improve if you're doing the same stuff all the time.
> 
> I'd also look at nutrition and sleep patterns, try to make them regular and supporting the exercise I'm doing.
> 
> ...



I do a mix of on road and off road, all sorts of rides. I had been focusing more of off road and have now switched to on road but I feel the same on either bike. I'd say the first 10 miles are hardest then it seems to get a bit easier


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## sarahale (15 Jun 2017)

vickster said:


> A couple of years?  That's long long overdue!!
> 
> Do you eat a good balanced diet and a lot? What blood tests did the Dr do? Do you feel worse at the 'wrong time of the month' or at certain points in your cycle?



They are both wonderful bikes though  

I eat well yes, I'm small but always have been and for the last couple of years my diet has improved alot. I consistently feel tired and harder to breathe than I used to, nothing seems to change it


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## sarahale (15 Jun 2017)

Welsh wheels said:


> Are you in a cycling club? If not, consider joining one. It would make riding more interesting and they'd likely do social events outside of riding.



Another thing to try thanks, perhaps I'm overthinking and a distraction could be all it takes to make me forget about it.


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## vickster (15 Jun 2017)

Both...both...you mean you only have two   

I'd go back to the doctor and get a wider range of tests. Have you been checked for asthma etc? You don't smoke I assume


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## sarahale (15 Jun 2017)

vickster said:


> Both...both...you mean you only have two
> 
> I'd go back to the doctor and get a wider range of tests. Have you been checked for asthma etc? You don't smoke I assume



Bigger garage needed first! 

I don't want to waste their time but if cutting back doesn't make a difference then I'll have to go back. They didn't check for asthma no, just listened to my chest. I don't smoke no


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## Welsh wheels (15 Jun 2017)

sarahale said:


> Another thing to try thanks, perhaps I'm overthinking and a distraction could be all it takes to make me forget about it.


Cycling with other people, especially in a large group, does wonders for taking one's mind of the 'suffering' part of the cycling.


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## Welsh wheels (15 Jun 2017)

From what you have described, I would also wonder if you may be anaemic (but I'm not a doctor though!).


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## Andy_R (15 Jun 2017)

Welsh wheels said:


> From what you have described, I would also wonder if you may be anaemic (but I'm not a doctor though!).


+1

Tired and short of breath - possibly not enough oxygen in blood, caused by lack of haemoglobin. As others have said though, I am not a doctor.


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## Racing roadkill (15 Jun 2017)

sarahale said:


> Thanks, perhaps I just need to take it a bit easier I just find it hard to as I always want to be on the move!
> 
> I've had blood tests, X-ray's, ultrasound on neck lymph nodes and ECG all back as good!



If they've checked for anaemia, and Thyroid function, and it's okay, then it will most likely just be fatigue. I do about 6 or 700 miles a week at this time of year, it took a lot of years to build up to that sort of mileage, and I have suffered from over training fatigue in the past. As long as you keep your feeding / fuelling proportionate to the training / riding / miles that you are doing, your weight and / or fitness won't suffer if you back the mileage / intensity off for a bit. It may not be just mileage you need to wind back, but look at the terrain, and the effort you put into the miles. Maybe do a longer ride at the weekend, but don't go balls out, and don't get sucked into any 'chopper racing'. As soon as you feel better, crank the intensity back up.


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## sarahale (16 Jun 2017)

No anemia and thyroid is fine, I was almost hoping it was anemia for an answer that was easy to solve. 

I've got a few more weeks of 150-200 miles then the long ride and after that I'll give myself some time off and see if it helps. And go from there really.


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## alicat (16 Jun 2017)

I wonder if you are setting off too fast? I find I enjoy a ride more if I cycle in pootling mode for the first five miles or so.


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## mjr (16 Jun 2017)

sarahale said:


> In 3 and a half weeks time I have a long ride but after that I'm thinking of just knocking it right back to commuting only which is around 50 miles a week. But this makes me sad and I think I'll just get unfit and fat. Or do I stick with it and hope I just feel better.


Fifty miles is plenty to keep fit. I'd explore why it makes you sad - why is that? Does it mean there are rides you'd enjoy that you're not doing?

However... be prepared for this: I think there can come a point where we sort of max out, where we hit our limit as it were, aka find our level, and while we might have occasional fluctuations, none of us are getting any younger and the ultimate trend is going to be naturally slowly slower towards some sort of baseline. So eventually we all have to make peace with this:


vickster said:


> Or just slow the cycling down and enjoy a more relaxed pace?


Some days I choose pootling aka bimble-mode aka wafting along. Sometimes it's a deliberate decision because I know from past experience that bad things will happen if I don't (after certain medical events, for example) and other days it's that I've started riding and I just discovered that I have empty legs. When riding for transport, I have to allow time to ride it pootling just in case - if I arrive early, there's usually some work or reading that I can do from my phone, or there's something nice to look at near the destination.



sarahale said:


> Another thing to try thanks, perhaps I'm overthinking and a distraction could be all it takes to make me forget about it.


Maybe not overthinking, but worrying about it probably won't make you any less tired.



Welsh wheels said:


> Cycling with other people, especially in a large group, does wonders for taking one's mind of the 'suffering' part of the cycling.


Maybe. Even with relaxed riding groups, I can occasionally get swept along into pushing myself harder than I know I should, especially if someone else in the group wants to get home for some testing time limit, and then I end up drained for days afterwards. This seems to happen more easily if it's a headwind home. 



Andy_R said:


> Tired and short of breath - possibly not enough oxygen in blood, caused by lack of haemoglobin. As others have said though, I am not a doctor.


FWIW I've a fine haematocrit but still get tired. I think there can be other ways of getting tired by too many long rides - so-called overtraining seems an obvious suspect. http://www.cyclingweekly.com/fitness/training/five-ways-to-tell-whether-you-are-overtraining-147014 - pootling is something I find relaxing, almost like meditation - at least as long as I'm not riding busy roads where I can end up feeling under siege!



alicat said:


> I wonder if you are setting off too fast? I find I enjoy a ride more if I cycle in pootling mode for the first five miles or so.


I'm lucky(!) in that junction-infested road layouts mean it's rare that I set off too fast, but on the rare occasions that I do, it is indeed far more tiring than rides where I set off easy and speed up.


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## HLaB (16 Jun 2017)

I love my cycling and never felt fatigued but I was advised to cut back. I miss that aimless cycling sometimes though but I've substituted it with a more structured training plan to TT's (before I just turned up). It seems to be working I've knocked a whole lot of time relatively for TT's and set a PB (24.56) on Wednesday night on what is called a slow course (poor surface and dead turn, where I unclipped). Perhaps you need to focus your time around something to substitute for cutting back @sarahale .


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## sarahale (16 Jun 2017)

alicat said:


> I wonder if you are setting off too fast? I find I enjoy a ride more if I cycle in pootling mode for the first five miles or so.



Nice idea but I don't think so, it all feels like hard work to start with so I'm slower to begin with. Then as I feel better I get going.


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## sarahale (16 Jun 2017)

mjr said:


> Fifty miles is plenty to keep fit. I'd explore why it makes you sad - why is that? Does it mean there are rides you'd enjoy that you're not doing?
> 
> However... be prepared for this: I think there can come a point where we sort of max out, where we hit our limit as it were, aka find our level, and while we might have occasional fluctuations, none of us are getting any younger and the ultimate trend is going to be naturally slowly slower towards some sort of baseline. So eventually we all have to make peace with this:
> 
> ...



It makes me sad because I like being so active and fit. I'm only 27 and yet my energy has gone, I just feel rubbish but there is no reason for it. I want to be out exploring on my bike all day like I used to. But that's hard to do feeling this way.


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## sarahale (16 Jun 2017)

HLaB said:


> I love my cycling and never felt fatigued but I was advised to cut back. I miss that aimless cycling sometimes though but I've substituted it with a more structured training plan to TT's (before I just turned up). It seems to be working I've knocked a whole lot of time relatively for TT's and set a PB (24.56) on Wednesday night on what is called a slow course (poor surface and dead turn, where I unclipped). Perhaps you need to focus your time around something to substitute for cutting back @sarahale .



I've always wanted to give climbing a go, not sure if that's exactly what you ment but it's an idea!


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## mjr (16 Jun 2017)

sarahale said:


> It makes me sad because I like being so active and fit. I'm only 27 and yet my energy has gone, I just feel rubbish but there is no reason for it. I want to be out exploring on my bike all day like I used to. But that's hard to do feeling this way.


There probably is a reason but you don't know what it is. You might not find out what it is before it resolves itself, or you might find out on the way to overcoming it. I think you should keep asking questions of your medics and other advisors but do what you feel best.


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## Racing roadkill (16 Jun 2017)

sarahale said:


> It makes me sad because I like being so active and fit. I'm only 27 and yet my energy has gone, I just feel rubbish but there is no reason for it. I want to be out exploring on my bike all day like I used to. But that's hard to do feeling this way.









Help yourself.


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## sarahale (16 Jun 2017)

Racing roadkill said:


> View attachment 357465
> 
> 
> Help yourself.



I did think it was this but when I cut down I missed the time spent on my bike. And I still felt rubbish.


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## sarahale (16 Jun 2017)

mjr said:


> There probably is a reason but you don't know what it is. You might not find out what it is before it resolves itself, or you might find out on the way to overcoming it. I think you should keep asking questions of your medics and other advisors but do what you feel best.



If cutting back doesn't help then I'll definitely be heading back to the docs.


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## HLaB (16 Jun 2017)

sarahale said:


> I've always wanted to give climbing a go, not sure if that's exactly what you ment but it's an idea!


TT'ing is just my thing, go for it :-)


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## Andrew_P (7 Sep 2017)

sarahale said:


> I did think it was this but when I cut down I missed the time spent on my bike. And I still felt rubbish.



I have been having problems off the bike that initially the bike relieved for around 4 years!. My symptoms at first was constantly running nose 24/7 365 days. Numerous vists to GP, antibiotic all the major antihistamines and nose sprays and nothing stopped it. The GP at the time just more or less said put up with it! Then sudennly 2 years ago it changed stopped running and the intense tingling a little pain.

But then the bike seemed to make it worse from October last year. I was doing 150-210 miles a week. My average speed dropped from 17.5-18.5mph weather\wind dependent over the 50 minutes to work to 55-60minutes with the runny nose to 15-16.5mph now weighing a svelte 11.9 stone when the runny nose stopped and I have never been able to get back to where I was at before the problems started ramping up in 2015 and this was over a 14000 mile period of trying! 

When I started cycling I was 18 stone and 45 smoker - it took me 8000 miles before I started averaging 17mph+ and was still 15stone. ( I knew Strava & Garmin had a use to look back historic fitness!)

I started to have sudden breathless moments on the bike that really worried me always at random moments for no real reason my HR at these moments never reflected it this started mid 2016 but it forced me to back off and coast or light pedal until it passed., sometimes on the flat sometimes downhill sometimes uphill. Really hard to articulate it but wasn't like the breathless feeling from being on my limit or going up hill. The one time it was always prevalent was in the first 2 miles in the morning having left home. Never had the same leaving work.

I am a medical mystery over the last 30 months. Numerous consultants both private and NHS and GP's I had a constant diagnosis for my symptoms off the bike of Atypical Facial Pain (in other words no clue) As I have intense tingling and back then a little pain in and around my sinus areas. Had they kept throwing their full artillery of pharma at me and I kept refusing ot take them as I refused to believe it was "nerve pain" and couldn't face the side affects and feeling even worse on the bike and in myself!!

Suddenly in October my symptoms off the bike really upped their game and I developed huge swelling randomly in and around my left side of my face, sinus area and eye also random throat closing hard to swallow & breathless that replicated the feeling on the bike!

The reason I am adding this to your thread is that everything you posted in your first post I could relate to, not feeling myself, struggling (for want of a better word) on the bike, when really I should have felt great never been fitter or lighter in all my adult life. There is a tough hill halfway to work that in the first six months of cycling I walked up, I could still get up the most days without any problem but then some I couldn't it was a struggle it made no sense to me from a physical point of view. It could be like night and day the difference from one 24 hour period to another. 

I finally became aware that I could control my symptoms by what I use personally and where I am. Home being the worst. I think I have some really weird allergy and I am awaiting an immunology appointment. I now think the breathless moments on the bike were caused by random contact with whatever the allergen is, the ones leaving home because the allergen is constantly at home and was taking 2 miles of exertion and mucus production to move it out (or at least where I used to live :-( ) having had the full rack of GP allergy and other blood tests coming back negative she made the immunology appointment. Not saying this is your problem but the breathless feeling with no real cause coupled to having had the tests and your other descriptors matched mine except for my Sinus part.

I had never believed the Dr's allergy diagnosis 5 years ago because nothing they gave me stopped my nose running!!

As an aside I had to see 6, yes 6 GP's over a 2 week period before I found one that listened to me rather than just look at my file and repeat the mantra Atypical Facial Pain. She took on-board my comments, the fact I never believed it was Atypical Facial Pain and the main fact that now I had the massive swelling, so much so at its peak I cannot see out of my left eye. and my right one droops right over. I can handle that but not everything else that comes with it. I found if I could isolate myself it improves over a 24 hour period, but random people will set me off the allergic response. To say the last 9 months has been a nightmare is an understatement!!!

The only thing that gave me any pain relief was a high dose of Steroids, but they are not long term and I am a week away stopping them from tapering down. 

Sorry for the long post but allergy food or environment might be worth getting some tests for, or even try a few different OTC antihistamines just to see if it improves. 

Sorry about the long post!!


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## Andrew_P (7 Sep 2017)

Just noticed Sara has not posted since July so unlikely to see it


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## mjr (7 Sep 2017)

Andrew_P said:


> Just noticed Sara has not posted since July so unlikely to see it


You never know. It may also help others, so thanks anyway.


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## albion (13 Sep 2017)

Andrew_P said:


> I have been having problems off the bike that initially the bike relieved for around 4 years!. My symptoms at first was constantly running nose 24/7 365 days. Numerous vists to GP, antibiotic all the major antihistamines and nose sprays and nothing stopped it. The GP at the time just more or less said put up with it! Then sudennly 2 years ago it changed stopped running and the intense tingling a little pain.
> 
> But then the bike seemed to make it worse from October last year. I was doing 150-210 miles a week. My average speed dropped from 17.5-18.5mph weather\wind dependent over the 50 minutes to work to 55-60minutes with the runny nose to 15-16.5mph now weighing a svelte 11.9 stone when the runny nose stopped and I have never been able to get back to where I was at before the problems started ramping up in 2015 and this was over a 14000 mile period of trying!
> 
> ...



Very, very close to mine. I suspect for some, a house move, change of bedroom, or other simple environmental changes will help. The change to colder weather has hit me bad, almost unable to pedal yesterday morning, so central heating is now on low.

I should have reacted faster, my long standing sinus issue coming back on strong.
At its worst, a few years back it took 6 hours into a days cycling to get relief, until I realised it was allergy based.
Sadly I got refused tests, though from your info, they might have been in vain anyway.


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## Andrew_P (13 Sep 2017)

albion said:


> Very, very close to mine. I suspect for some, a house move, change of bedroom, or other simple environmental changes will help. The change to colder weather has hit me bad, almost unable to pedal yesterday morning, so central heating is now on low.
> 
> I should have reacted faster, my long standing sinus issue coming back on strong.
> At its worst, a few years back it took 6 hours into a days cycling to get relief, until I realised it was allergy based.
> Sadly I got refused tests, though from your info, they might have been in vain anyway.


Seriously?! Never come across anyone else with anything similar, I long for the old days of just a runny nose.

I am getting very close to identifying the offending items, I have immunology on the 29th and will come back and update this, if nothing else to let you know.

Looking back over my history I had a very bad reaction to Metronidazole around the time it got really bad. That was late 2014. Everyone blamed the Dental work for which the drug was for as they thought it was an infection. Strangely, I had a really rough year last year building up to this. My wife had stopped smoking and taken up Vaping April 2016, I manage to identify I was genuinely allergic to it. Looked up the ingredient and it was 70% Propylene Glycol. So Did lots of research, and came across an medical bulletin about having to recall Metronidazole to repack with new warnings namely Vapours had to stop vaping as it stops your body processing PG. Now for most that's not a problem if you do not Vape. I do not Vape but now I am pretty sure I am highly allergic to PG, hence the reaction, not to the actual drug like the Dentist thought but to PG getting stuck in my body. 

In fact if you look in commuting I recall moaning about the Vaping come out of cars and how I didn't like it.

Problem is PG is fecking everywhere and in loads of things.


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## presta (14 Sep 2017)

Been there, done that, got the T-shirt. It's coming up for 7 years since I stopped training, and I still haven't recovered, so I probably never will now.


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## albion (14 Sep 2017)

Andrew_P said:


> Seriously?! Never come across anyone else with anything similar, I long for the old days of just a runny nose.
> 
> I am getting very close to identifying the offending items, I have immunology on the 29th and will come back and update this, if nothing else to let you know.
> 
> ...


Well, the centre is the sinuses, I identified as an immune system and enviro proble but theres differences, myself spotting a link to childhood asthma, that again an enviro problem.

The asthma link is likely why I endured it rather than seek another batch of pills that work for a while.


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## Andrew_P (2 Oct 2017)

albion said:


> Well, the centre is the sinuses, I identified as an immune system and enviro proble but theres differences, myself spotting a link to childhood asthma, that again an enviro problem.
> 
> The asthma link is likely why I endured it rather than seek another batch of pills that work for a while.


Well a bit of another waste of time, Negative for the 16 UK Allergy panel (which I had already had blood tests for) I was going in to a reaction in the Dr's Room and it was subsiding every time I went out of it. He told me it was the heat in the room, I mean seriously. He wouldn't accept ti was either something on him or in the room less likely as you would have to think it had been cleaned the same as the waiting room. 

Anyway I had 5 large vial of blood (so much they asked me if I had eaten!) and looking at the Barcodes on the sheets it will equate to may 20-30 tests. Was told I would hear by the end of this week, testing for common and not so common to rare auto immune problems so probably would like all those to come back negative! The diagnosis (to which I wanted knock him out) Idiopathic Angioedema and Idiopathic Facial Pain and possible differential diagnosis of Rosacea. Subject to blood tests. As I said to him it has to be statistically impossible let alone medically that I could have those three all on one side of my face. Idiopathic, means "We Do Not Know" Angioedema is a fancy word for swelling.

IMO Five out of the sixteen skin tests reacted, I didn't get a hive like the histamine test one but I had a angry red blister, not that big for Cat - and later in the day 4 more developed but the pen description had come off. Not huge. But was told the one that instantly came up was due to me having a certain antibody.

It really feels they make some of this stuff up as they go along. Back to the drawing board.

On a side note I waited 3.5 months for this appointment. There were 2 ladies on Reception 4 Specialist allergy Nurses, one non specialist and as far as I could tell one non lead consultant. I counted 35 chairs in waiting room one and 28 in two. I was 20 minutes early and got seen straight away it was me and another two people in the all the time I was in there and most of the time the staff had barely anything to do. I have experienced on all my travels through our NHS apart from frontline A&E and GP surgeries. Having on 35 years since I last had to attend Out Patients in Hospitals it has changed so much. My memory was standing room only, and fecking long wait. But then probably didn't have to wait 3.5 months to get there...

I am not a good looking chap at the best of times and I genuinely do not care how I look its the blood pain its causing me and how long it goes on for!


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## Andrew_P (4 Nov 2017)

Don't know why I keep updating this thread, hope Sara doesn't mind and she is ok as she has not posted for a while. Her symptoms were rather similar to my initial symptoms

I had high IgM and low Vit D from my Blood tests and higher than normal marked as borderline high Bilirubin 

Having been discharged by Immunology my GP took one of the Differential diagnosis (Allergic Rosacea) and referred me to a Dermatologist I was sceptical and to circumvent the 3 month lag with the NHS and move on to the next one I asked her to recommend one privately and booked it. 

Having been, I am now waiting for some blood tests and a referral to the St John Institute. Have to say the symptom are getting pretty unbearable. Ridden this year less than I normally did in a month. My living circumstances are pretty dire.

Being tested for this gruesome lot plus Retroviral Serology the Lady I saw her letter seemed to be really digging out Immunology asking my GP to re-check and re-test using the same and different tests. Also mentioned the two irregularities mentioned from Immunology and suggested It should be looked in to further rather than assume its a marker for inflammation and listed the tests. As far as I can tell most of this is not normal for Dermatology to be diagnosing not sure if that's a good thing or not. She didn't want to say during the consultation what she thought it could be and with hindsight I think she wanted to talk to someone else, possibly a Immunologist as most of the tests are focusing on this again.

Malignant lymphomas
Multiple Myeloma
*Wegener granulomatosis
Churg Strauss syndrome*
Lupus
Lyme

Rosacea lymphedema - they are going to trial treatment for this I am seriously hoping its this or contact allergy but I do not think it is.

Differential diagnosis

Secondary swelling to a Sinus infection but ruled that out because I have seen two private ENT since the swelling started (neither of which I had any confidence in) The first one worked at a Hospital I had attended and had literally read my file and just repeated my diagnosis form that and charged me £250 for the pleasure. 

Contact Dermatitis - but she hadn't seen it like mine doesn't itch classic butterfly rash swelling and rash above the eyes over the Lacrimal glands so doesn't think it is but wants a second opinion.

The First specialist not to mention nor note Idiopathic Facial Pain, in 5 years.

Some of the blood tests my GP had never done before and couldn't generate the form on Friday still waiting for the Call from Friday morning and they were requested by a Dermatologist of all people, she seems to be concentrating the blood tests with the Bold not that it is wise to use Dr Google.


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