Cycling UK Forum

Hello folks,

I'm looking for some advice. This could be lengthy, so before I forget, this is the make and model of E-Assist trike I will be referring to.


Now, grab some snacks and make sure you've been to the loo, this could get lengthy. I feel like I have to go into a lot of detail, if for no other reason, than to illustrate the reasons why I am asking for advice on these matters from a cycling forum, instead of healthcare professionals.

In mid-December 2023, I was diagnosed with thrombophlebitis in my lower right leg. They gave me Apixaban for it, which I told them would cause stomach upset due to containing lactose. They said it'll be fine and sent me on my way. Sure enough, my digestive system was in turmoil. Still, I soldiered it out, believing the Apixaban was doing me good.

I finished the course, but a few days before I did, I went to my GP surgery, as I was worried about stopping the Apixaban, as my leg didn't feel better, in fact, it felt worse. I couldn't see the GP (never can), so had to see the 'on-duty paramedic'. He looked at my foot and leg, said it was all better, it's fine to stop the Apixaban, some 'tenderness' is normal, and said to only go back to them if I feel a lot of pain.

I took this (bad) advice, finished the Apixaban and, in less than two weeks, the pain shot up over the course of a weekend, until it was unbearable. I mean unbearable! To illustrate: I broke my right ankle in 2019, my second broken bone, the first was my big toe, also on the right... my poor right leg has seen it all, lol! The pain of simply straightening my right leg with this condition was, I estimate, roughly five or six times greater than that of my broken ankle!!! It was such an immense, searing burning one morning, just straightening my leg, that it made me wet myself! I'm 38, otherwise fit and healthy, and have never had incontinence issues since being out of nappies. It wasn't because I was desperate for the loo, it was just the sheer and unrivalled agony of it all!

So, now that (I hope) I've made it clear as to just how terribly painful it was, I called 111, who then called an ambulance, as I was terribly worried, and it was a weekend, so no GP surgery. Also, I'm out in the sticks somewhat and, with no transport, it's not easy to get to hospital otherwise.

I had another doppler ultrasound, and they found that either the clot had dramatically worsened, or it had been misdiagnosed (this was a separate clinic doing this to where I had it done before). They said that there's no way I should have finished anticoagulants that early, it was clearly not better, and that I shouldn't have been put onto Apixaban anyway, knowing of my lactose intolerance, because it wouldn't be properly absorbed into my system.

They diagnosed me with multiple DVTs running from my foot to my iliac vein in my middle-abdomen. One particular vein is one solid clot from bottom to top! They told me I was to go onto Edoxaban and go back to them on 9th May (today). I asked them if there was a way of getting this fixed faster, but they told me this was the only way. They also told me to do 'light exercise' only. Now, when I exercise, I tend to go all-out, full-pelt, hard, hard, hard, until I can't any more. For me, light exercise is something like taking my trike on 'boost' mode for a three-mile ride. Apparently, this is not what they meant. What they meant was gentle pottering about in my flat. That's not even exercise!

Anyway, they said no triking until they've seen me again.

Now today, the guy I saw said they had wanted to do surgery to remove the clots, I said that nobody told me that! He simply shrugged and shook his head! I asked why I hadn't been given that option, he said he didn't know. I started to talk through, asking about what the surgery would entail, he said they won't do it now, it's too late!

Anyway, I described the trike to him, said it was E-Assist, promised him it was miles and miles easier than even walking, but he replied with "No cycling, you are at great risk of bleeding, if you fall off your bike or get a head injury, you could bleed to death.". I kept telling him, it's a trike, it'd be nothing short of a miracle if I fell off the thing, but he kept insisting and referring to it as a bike, so I'm not sure whether he understands, I'm not sure why I can't ride my trike, I don't know what the risk(s), if any, are, other than the extremely unlikely event of me falling off of the thing... I mean, I go on exclusively paved roads, if it's dark, I'm lit up like a UFO (see my profile pic), I'm unmissable, I'm sensible... yes, I do pedal quite furiously sometimes, when I really want a sweat-inducing workout, but I don't NEED to do that, I just feel like I need to do some good cardio and get this weight off of me, which I've gained enormously, and it's actually seriously upsetting me every day. I wore my best suit to my Dad's funeral last week, a suit that fitted perfectly, like it was made to measure, just a year and a half ago... I SNAPPED two of the waistcoat buttons... people laughed. I was crushed!!!

I simply MUST do SOMETHING!!!

So, with up to four DVT clots in my leg, one running the full length, up into the middle of my abdomen, on Edoxaban, can I ride the above pictured trike, in your opinion? Please also, if you can, state why you have said opinion. I'm not going to take this as sound medical advice because, frankly, I don't feel like I can consider anything as sound medical advice these days, from anywhere, but I'm getting sick and tired of being sick and tired, and especially of having a >£11,000 trike sitting there, gathering dust. I've only ridden the thing six times!!! Between having to save up to buy extra stuff for it, bad weather, and illnesses, that's the most I've been able to use it!

Absolutely heartbroken and terrified in equal measure.

Thank you for coping with my pity party. My apologies for the lack of doggy-bags, lol!

I had a serious DVT above my left knee back in early 2017, once diagnosis was confirmed by ultrasound i was put on AC's and told to not do any exercise beyond day to day survival. That lasted for three months before they allowed me to start light exercise, it was a full six months before i was allowed to return to strenuous exercise.

You ask why the insistence on such a complete layoff, yes the AC's could result in a bleed out from an injury if you had a mishap but just as importantly, the increased blood flow whilst exercising could result in a mobile clot which at best could cause a stroke, at worst, well good night Vienna.

Is your 'cycling' more important to you than your health? From your description, your DVT's are worse than mine, i'd be following the medics advice to the letter!

Seven years later now, I wouldn't say that i've made a 100% recovery, damaged veins and lymph nodes can't be fixed, but i have ridden something like 50k miles since and most of the time i have no issues. The leg is more susceptible to cramping, particularly if i'm sat for too long it can get a bit swollen but both things are manageable. I stopped taking AC's after 2 years, they were giving me issues that outweighed their usefulness at that stage but they affect people differently so don't take any score by that.

This is something you should discuss with a specialist.

The thrombus is in the venous system, bits breaking off will travel up the inferior vena cava , pass through the right side of the heart and lodge in the lung. A long bit of thrombus can block the pulmonary artery where it divides to the left and right lung, and death is instant. Stroke is unlikely unless you have a septal defect ( hole in the heart) allowing thrombus to pass directly from the right side of the heart to the left without passing through the lung.
I should stress that although I am familiar with the plumbing, I’m not an expert in DVT.

Can you discuss this with the clinician you saw last?
The hospital should have a patient liaison and support department (PALS) who may be able to help you get in contact by phone or e mail with the clinician you saw. Write down everything you want to discuss before a phone call.
Is there anybody who can help you directly with this? Talking to strangers on the internet is a poor substitute.

Exercise is unlikely to result in weight loss, eating less is the answer to weight loss.

Good morning. I'm very sorry to hear of your problems.

You've asked for advice, and I'm happy to offer some. But you might not welcome all of it... would you still like it, here and in public?

Jonathan

Hi Drummer. Sorry to read about your experience with a v nasty DVT. I'm assuming Jonathan Jdsk is another medic. If so I'd take him up on his kind offer of a private chat. Personally I'd be listening to the consultant supervising your anticoagulation therapy. It's only for a few weeks after all.
531colin's weight loss advice is spot on. Exercise for fitness, diet for weight loss. Trying to lose weight by exercising rather than permanently changing your diet for the better is an exercise in futility. The BBC have a good site for working out which type of eater you are and which type of diet is likely to suit.
https://www.bbc.co.uk/food/articles/wha ... et_for_you

Thank you all for your replies. Just to address some things mentioned:

I would tend to agree with you that talking to NHS staff is best, and to follow their advice, but that's practically impossible to do, when they're all contradicting each other, not being clear with information, and not informing me of vitally important information until it's far too late, as with the surgery I could have opted for, if I was given the option. Throughout all of this, NHS staff have been absolutely useless, which is why I'm asking here, as I mentioned all of that in the OP.

Going through all of this has brought back my intense anxieties, and I have only slept for about three hours this morning, I couldn't sleep all night, not a wink. So, I do want to know what I should and shouldn't do, and loosely why, but, in a way, I'm trying to put it out of my mind as best I can, that I could drop dead at any instant, or worse, die slowly and in agony, just like my Dad recently did, with a pulmonary embolism and stoke, no less! I watched my Dad slowly suffer and die from pretty much exactly what I'm terrified of having happen to me, holding his hand and stoking his head until he was declared dead, then everyone left me there with him for another hour. I'm quite well-versed in that side of things, and it has kept me up crying all night. Living alone with this, with nobody to be with me for over a hundred miles, is a living nightmare.

It's a very odd thing regarding my weight. I'm not here to advocate for anything, just explain: Right up until 2011, when I stopped eating meat, I simply could not gain weight or muscle. I was lanky, always. I used to do haymaking, lobbing hay bales about all day on local farms (hay is far heavier and more dense than straw, for reference), I'd go to the gym and work with a coach/trainer, I'd cycle miles and miles, yet none of my muscles grew, and I remained underweight and skinny. I played drums an awful lot back then too, perhaps all the cardio was doing something? I've no idea. Within the first month or so of a vegetarian diet, I started gaining weight, out of nowhere! I ate a fair amount of processed foods back then, yes, as I'd just come from a meat-heavy diet, and it took some brain rewiring to get used to different ingredients. Carbs played a large part too. However, especially when I found a surrogate Mother figure and we house-shared, I would eat a well-balanced fully vegan diet, and I began swimming. In only about three months, I saw what bit of belly I had turn into a toned abdomen, my arms were toned, and I was firming up! I'm not very good at swimming, especially front strokes like crawl, as my scoliosis makes it difficult to get my face out of the water to breathe, but I tried my best.

Then, when my friend and I had a falling out (we didn't know I was autistic, and that my 'temper tantrums' weren't temper tantrums at all, but meltdowns, fully recognised and accepted as something out of my control), I was made homeless, dossed about on streets, couches, shelters and such, and began gaining weight again. I've lived in the same flat since 2019, I've remained on a clean, healthy, plant-fuelled diet, but with this current absence of exercise, my weight has piled on. My diet has remained largely the same, and yet I've gained the weight from as soon as I began getting ill (my illnesses are a much longer story, but all linked, and go back further than simply the DVTs... the DVTs were caused by previous illnesses making me immobile... long story).

So the long and short of it is, really... I dunno. I don't feel like I know anything any more.

Sorry these are lengthy replies and posts, and sorry if I'm blunt today... I'm just in a bad mental space.

Cyclothesist wrote: ↑10 May 2024, 9:07am 531colin's weight loss advice is spot on. Exercise for fitness, diet for weight loss. Trying to lose weight by exercising rather than permanently changing your diet for the better is an exercise in futility. The BBC have a good site for working out which type of eater you are and which type of diet is likely to suit.
https://www.bbc.co.uk/food/articles/wha ... et_for_you

Thank you for this link. I tried that out and, oddly, this was my result (copied directly from page):

wrote: Based on your answers
you are not in any diet category
Your results indicate that none of the eating types we were testing for (Constant Craver, Feaster and Emotional Eater) are a particular issue for you.

There may be something else about your lifestyle or eating that causes you to be overweight, such as big portions, snacking, high fat foods, too much time sitting down, or lack of exercise.

Try keeping a food diary to note down when you eat and how you feel at the time – you may be able to match your food and feelings to one of these diet groups.

You could choose another diet, one that will fit in with your eating patterns and lifestyle, rather than whatever is top of the bestseller list, and use recommended strategies to help you stick to it.

It's odd that this refers to too much sitting down and not enough exercise being possible factors. It's exactly this kind of conflicting advice which makes me shut down and conk out, lol!

No need for an apology, it's a rubbish situation, and I'm sorry to read about the death of your dad too.
An accident such as leg suck while anticoagulated doesn't bear thinking about. Have you considered a static bike for exercise, and getting out in nature without a bike/trike for a while? If you have a good relationship with your GP maybe you could discuss safe exercise options with them?
I'm impressed you flummoxed the BBC diet algorithm but maybe the advice to keep a food diary for a week or so will reveal insights into your eating habits particularly if you can discuss it with a dietician.
Good luck. Things will improve but sometimes take a bit of time for the body to heal.

Thank you for understanding. I suppose my biggest reason for being confused originally, is that walking really hurts quite a lot. Now, I've lived with scoliosis since early childhood, had a hernia in my childhood too, which was operated on on my 13th birthday, of all days, but anyway, the scoliosis gives me constant, 24/7/365 back pain. Nowadays, I only ever really consciously feel the 'constant grumble', as I call it, when I think about it... like now, lol! It's like a nagging toothache. What I'm trying to get at is that I seem to have a rather high threshold for 'internal' pain.

I mean, I kept back and forth to my GP, telling him I'd broken my ankle. It was two years later, when I threatened legal action, that they finally had me scanned properly and it revealed that I'd been walking on a broken ankle all that time, sometimes taking painkillers, but not always! It was mostly just very painful, but they kept telling me it wasn't broken, so I simply muscled through it. This, though, it gets to the point where, if I am walking about for a bit, I'm actively yelping and making sound effects, and that is categorically NOT like me! My back pain has to get so bad as to feel fairly close to the same level as a tooth being drilled before I'll even make a face.

Walking is miles and miles more painful than triking... which is to say, triking doesn't hurt at all! I had the trike unfolded in my flat for a while (when my flat wasn't chock full of stuff from Dad's house, like it is now). I'd often sit on it with my feet up on the drive motor, and all of the leg pain would vanish! Back when the GP told me this was a 'nerve issue', I would go out and ride, and all of the pain was gone completely, not even a glimmer! So I was just confused as to how having my legs low (feet on the ground), with them, albeit gently, pounding the ground, to walk, which also really hurts, would be better than sitting with my legs raised, with no pounding, compressive forces, moving my legs in a similar fashion, and furthermore, for the latter to be downright dangerous. My brain doesn't compute that very well at all. THAT is where I need advice, but I can't deal with being more terrified of my situation than I already am. It's causing me immense distress, causing me to lose loads of sleep and, when I do pass out from exhaustion, I'm having night terrors, mostly related to this, but also related to many other factors in my past contributing to cPTSD.

Also, with all of these stresses, the craziness it's driving me to, being slammed up like this and basically losing what little bit of life I had, has been causing me severe meltdowns. My autism/autistic meltdowns range from just screaming to full-blown flat-destroying, hand and head-shredding throws of manic despair. That's so not-good, I'd go so far as to say it might be bad! (Sarcasm... I CAN do that, lol!)

That's where I'm at most risk of injury, potential brain bleeds (the number of times I've had head injuries from bashing it off of walls, doors, floors, counters, even allegedly smashing items into my head...), this is terrible for me at any time, let alone while I'm on anticoagulants! The prospect of a meltdown terrifies me, which is why I try to let off steam by shouting and screaming, stimming like all balls and singing at the top of my belting voice, when I sense myself getting overwhelmed, overloaded or stressed. Sometimes, it doesn't help at all.

What DID help, always, was triking... all those six times! Well, five, the first was with the dealer, a test ride. Every other ride has been in response to stressors, and it has stopped them worsening every time.

I've just had a thought... the concern here is with heartrate, yes? I got that from a previous reply to this post. If that's the case, can you get smart watches that you can set an alarm on if your heartrate raises above a certain level? If so, this could really help. Also, I've read conflicting information about E-Assist recumbent trikes with all the legal limitations in place etc. The legality of having a throttle which can take the trike up to 15.5mph. I've read that it is legal, so long as this is the limit (plus the power rating, I don't know about that, it's all factory-settings, so I'm assuming it's legal), but there are others who say no; if it's powered without input from the rider, it is classified as an electric/motor vehicle and, at least currently, illegal, due to needing to be registered, taxed etc. If it is legal, perhaps I could go for a leisurely ride around the block and, if my heartrate gets too high, just use the throttle and relax?

I did try to buy the only trainer in the world that appears to fit it, but the people who make and sell it, in the States, messed me about with the order, took months, then said I'd never ordered it, then said I did but it got lost, then refunded me. Ok, they refunded me, but I've still got no trainer.

I just remembered, you asked whether I could use an indoor bicycle, and the short answer is no, not really. The reason the trike works is because, with scoliosis, which is getting worse as I age, I can't even sit upright in a chair for a few minutes without it really starting to get to me. Riding an upright, even static, would do my back in. Just one day's washing up, I have to have at least two goes and recline in between. I also have old injuries in both wrists, long story, jumped off a bridge like an idiot, anyway, the pressure on my wrists would wind up being a barrier as well.

Yes, it would be an idea to keep a food diary... I mean, I usually remember what I've eaten, as many of my days are set on traditional stuff (tonight, sorry, chippy dinner because it's Friday!). Autism rule-following and routine, lol! I suppose, really, Friday and Sunday are my only true ritual days (Sunday roast), so I could be flexible at other times.

As an example of a 'lazy' meal I make, and they're always a bit different, I call it a 'Bung-In', because it began life as something I'd make when we didn't have a full portion of anything to eat, so I just slung it all into my Crock Pot and stewed it. Anyway, here are the ingredients to my last one, this last week:

Corn
Petits pois
Artichoke hearts
Broccoli
Kale
Spinach
Mixed beans
Aduki beans
Marrowfat peas
Red, brown and salad onions
Carrot
Parsnip
Celery
Bell peppers
Seitan
Veggie World roasted duck
Knorr vegetable stock pots
Vegetable bouillon
Fennel seeds
A concoction of herbs
Turmeric
Garlic
Basil
Ground rainbow peppercorns
Extra virgin olive oil

It was a bit bean/pulse heavy this time, I know. I don't usually use too many, as it can make it stick and burn.

By the way, just to add, I've gained nearly six kilos in the last year and a half, and that's just from when I last weighed myself... I may have gained it faster than that. I'm not an expert, but that doesn't seem right to me.

get this weight off of me, which I've gained enormously, and it's actually seriously upsetting me every day.

You are at big risk of depression if you do not exercise.However always listen to your doctor/GP.Maybe a Tai Chi class to be social and exercise.

Note cycling exercise burns very little energy.

To cut down on weight.You just need to add more food to your plate.Make sure it is vegetable eg carrots,tomatoes.You will reduce automatically the bad food.

Maybe the docs will be ok with a stationery bike connected to Peloton - you can chat to other cyclists.

*****************************
I ride Brompton,Hetchins 531

briansnail wrote: ↑16 May 2024, 4:46pm You are at big risk of depression if you do not exercise.
To cut down on weight.You just need to add more food to your plate.Make sure it is vegetable eg carrots,tomatoes.You will reduce automatically the bad food.

Maybe the docs will be ok with a stationery bike connected to Peloton - you can chat to other cyclists.

Thanks for your reply.

I already have depression in buckets, have had for most of my life, coupled with cPTSD, anxiety and other stuff. You're right, not getting out and not exercising is putting a massive strain on my mental health.

I know they were examples, but just to note: I've got a very bad intolerance to tomatoes, though seemingly only the skin or seeds. With that said, antihistamines seem to be doing the trick! I only consume plant-based foods anyway, haven't had meat, fish, dairy or eggs for many, many years now.

The problem with uprights is that it puts strain on my wrists and back, and I have old injuries in both wrists, as well as scoliosis, which has suddenly got a lot worse over the last few years. I simply can't tolerate an upright, not even for five minutes. Even sitting on a train causes me grief with my back for days. Just doing the washing up, stood up for a few minutes, can see me in a lot of pain. This is why I forked out so much money on a recumbent.

It's looking like I'm just going to have to sit and wait. It's just one of life's contradictions, that too much sitting about causes DVT, yet with DVT, one cannot be too active.

"Cycling burns very little calories......" ?I can,t agree with that I,m afraid.Pootling about town won,t use many cals.A 200km hilly audax sure as hell will.You,ll be hungry for a few days after.Tour riders are consuming up to 6-7000cals a day and these people still loose weight by the end of the Tour.Ok,this is an extreme example but please don,t insult our intelligence with uninformed statements.

"Cycling burns very little calories......" ?I can,t agree with that

No insult intended.The bicycle is just so efficient.If you have a racing bike which I am guessing you do (one of many?) the light weight and aerodynamics means you have a Formula one machine compared to a Morris Oxford.Your machine will have a burn rate of even less calories.
Your point is taken.Long distance and racing purists will burn a lot of calories.Though the majority of cyclists of course sadly will not.
**************************************
I ride Brompton,Hetchins 531

I understand that logic of lighter,better ,more efficient bikes requiring less energy but,conversely, can you not also expend just as much energy as on a heavier machine by simply going faster.Also,recumbents are a slog uphill surely?