OP
OP
sarahale
Über Member
I did think it was this but when I cut down I missed the time spent on my bike. And I still felt rubbish.
Reducing/ giving up to improve your health?
- Thread starter sarahale
- Start date
Page may contain affiliate links. Please see terms for details.
I did think it was this but when I cut down I missed the time spent on my bike. And I still felt rubbish.
HLaB
Marie Attoinette Fan
TT'ing is just my thing, go for it :-)
Andrew_P
In between here and there
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!!
mjr
Comfy armchair to one person & a plank to the next
- Location
- mostly Norfolk, sometimes Somerset
You never know. It may also help others, so thanks anyway.
albion
Guru
- Location
- South Tyneside
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.
Andrew_P
In between here and there
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.
albion
Guru
- Location
- South Tyneside
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.
Andrew_P
In between here and there
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!
Andrew_P
In between here and there
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.
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.
