30 year old London taxi driver with AS

SherbetDab

Hi 👋🏻 

New here so I thought I’d share my story. Been driving a cab for just over a year now and what was supposed to be the best job in the world has turned out to be the worst (for someone with AS).

I’ve suffered with back pain since I was a child and was fobbed off until 2020 when I was officially diagnosed with ankylosing spondylitis. I was warned by the rheumatologist that driving a cab was not the job for me but giving up The Knowledge was never an option 💪🏻

Plus I have a terrible habit of not doing as I’m told 😂

In keeping with this fashion I’ve always resisted medication. I reluctantly took etoricoxib during a bad flare up last year and six months later — despite warning the docs of a family history of Chrons disease — I had to come off them due to stomach issues. I’ve since been offered adalimumab but the idea of it terrifies the life out of me.

Also, I’m a hell of a sceptic. Every appointment I’ve had I ask the specialists: ‘can I get into remission without medication?’ They look at me like I’ve got two heads and tell me it is absolutely, categorically impossible.

So, I’m one month into not eating gluten (but eating very clean, fresh, home cooked meals), I don’t drink or smoke, I’ve practiced yoga for 3 years, I’ve got a personal trainer and workout regularly yet I write this from the un-comfort of my bed.

The pain is surprisingly low at the moment but the fatigue has hit me like a ton of bricks. One day I feel like I could climb a mountain, the next I can’t climb the friggin’ stairs!

I’m trying my best and working so hard at a healthy lifestyle but I fear I’m wasting my time. I’m self employed and haven’t worked properly since Christmas. It’s becoming quite stressful.

Following this (ahem..) short and sweet sob story I have some questions:

Can you have fatigue without pain? I don’t know if I’m actually just a lazy slob 😂

Has anyone else here shunned the meds in favour of the ‘natural diet and exercise’ approach?

Am I being stupid for not taking medication?

Does anyone here drive for a living despite pain? Or — find their job is actually detrimental to their arthritis?

Is anyone self employed? How do you cope with being off work?

Any answers/insights would be gratefully received ☺️

And lastly, if you made it this far without nodding off you deserve a medal!

Thanks, stay strong folks 💪🏻

Lane

Hi @SherbetDab welcome to our community.

I understand that you have AS back pain for a long time but only recently diagnosed.  You are reluctant to take medication, being offered adalimumab.  Maintaining good eating habits and yoga, does anyone have the same approach? For you it’s the fatigue and wandered if this is usual without pain? Having not driven for a living since Christmas, you also want to know how to cope with being off work?

It sounds like you are going through a lot. You have come to the right place to connect with other members that have similar experiences. I have attached some links for you to have a look at:

 

 

 

 

 

 

 

Lane

continued...

https://www.versusarthritis.org/about-arthritis/complementary-and-alternative-treatments/types-of-complementary-treatments/rosehip/

https://www.versusarthritis.org/news/2020/may/my-mission-is-to-solve-the-problem-of-chronic-pain-for-as-many-people-as-possible/

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

All the best.

stickywicket

Hi there @SherbetDab, Wonderful username. I used to love them. Must research where i can find the occasional one. 

I'm from Yorkshire, now living in Scotland. I've only been to London twice but I do know about The Knowledge and how much toil and sweat goes into learning it so well done you! No wonder you're reluctanct to walk away from it.

Not doing as you're told, eh? Well, the stubbornnes and determination are good tools for dealing with any kind of arthritis but I'm wondering how you'd feel if one of your passengers decided they knew a better route than you. I think we have to accept expertise. Especially those of us with faulty, overactive immune systems which are so enthusiastic about their job they attack not only 'foreign invaders' but also us. I've had RA for over 60 years and, believe me, my life got a lot better once DMARDS came into it.

Eterocoxib? Well, yes, the selling point of these Cox 2 inhibitors is that they won't upset the stomach. That, as a wise old GP once told me, is because they all do. The Cox 2 Inhibitors are less likely to than other NSAIDS but, with a family history of Chrones (another autoimmune disease which genetically would make you more liable than most to any other autoimmune disease such as AS) then that might not have been a good move. NSAIDS did for my stomach long before I got as far as methotrexate. My first endoscopy showed ulcers which had healed and much erosion of the stomach lining. But I'm good on methotrexate, hydroxychloroquine and a stomach-protecting med. Like you, I take as few meds as possible but I don't regard the DMARDS as optional.

Remission? I went into remission once or twice before I got anywhere near DMARDS. The best was my nine months pregnancy with No1 son. (Probably not an option for you!) It was heaven. Then he was born and it was hell!

 But we had another. No such luck with him.and no more remissions.

A healthy lifestyle will definitely help Going gluten free will help if you have a gluten intolerance. But these won't quieten down your rampant immune system. That requires DMARDS. I know they can be scary but, honestly, I think you're up to it. (And may subsequently wish you'd done it years ago.)

Stress, by the way, is a real trigger for arthritis. 

Oh ******** I've only just reached your questions! OK, here goes. Bear in mind I have RA and OA not AS.

Fatigue without pain? Oh yes. And vice versa.

Shunning meds in favour of natural solutions etc. Many on here have done - for a while. In my early years I tried lots of weird diets, potions and did exercise a lot. It was the DMARDS that really made a difference though I've always regarded exercise as essential ie exercise to help the arthritis not to lose weight (a healty diet sorts that out) and not the gym bunny stuff unless you have a personal trainer who is knowledgeable about AS.

"Am I being stupid for not taking medication?" I'll pass on that one! 'Nuff said.

Driving for a living? We've had people anxious about having to give it up /change jobs. Same with chefs, musicians, gardeners and others. My take on arthritis is'adapt and survive. The less flexible the joints the more flexible the mind must be.'

I was never self-employed so can't help there.

I've not nodded off (partly because i love your guts and honesty) so may I claim my medal, please?

Good luck!

CCM

Well, @SherbetDab, I think that balance is required. Healthy living and appropriate chemical help. I'm a bit wayward on the healthybit, but I've been on Adalimumab for a couple of years and glad that I have prescribed it.

I drove a great deal for most of my working life and found that to get out of the car and stretch for a short time every 2 hours.

CCM

SherbetDab

Wow, thanks @stickywicket, appreciate the welcome and thanks for sharing your story!

You are right though - when I’m working and a customer suggests a route to me I will happily take it and if it doesn’t work out - then we go my way!

This seems to echo in my dealings with the rheumatologist except now I’m the passenger who thinks they may know better.

So am I right in thinking you haven’t managed to reach remission despite taking DMARDS? But they still work for you to the point you’d never consider not taking them?

Glad you managed to find some respite during your first pregnancy, even if it was brief. Funny thing the human body eh. 

It’s funny you mention weird diets! My decision to not eat gluten is borne from desperation as opposed to sound medical advice. I thought I’d try it and see what happens. As for the gym I was desperate to get back as I’d lost weight (the etoricoxib probably had something to do with that).

Then, frustratingly I’ll have a few good weeks, forget I even have AS, then the vicious cycle starts again. Fatigue = not eating properly = not exercising properly = not sleeping properly = pain = fatigue. I’m sure you’re familiar!

Thanks for your reply it really is appreciated. 🏅😉

SherbetDab

Thanks @CCM I have been making an effort to get out the cab a bit more, a lot easier during the quiet period at the beginning of the year!

I'm with you on the healthy living bit it I find it extremely hard and it's the last thing you wanna do if you feel rubbish.

If you don't mind me asking, how have you found the adalimumab? Have you had any side effects?

I've seen from experience with close relatives the toll that taking medication long term can have on the body. I think this is where my reservations come from. Plus the idea of being 'immunosuppressed' frightens the life out of me.

I feel almost in control (even though I'm clearly not 😆) knowing I have AS and knowing I can find relief in living healthily but the idea of worrying about catching every cold/flu/virus that goes around is also giving me reservations. Can this actually happen? Have you had to adapt your lifestyle since taking adalimumab because of this?

Thanks again 💪🏻

Nfk_gal0617

Hi SherbertDab, I too have spondyoarthritis, although Rheumatology describe it as 'Peripheral spondyloarthritis , HLA B27 positve, with recurrent uveitis. Peripheral because mostly fingers, toes and wrists. I ocassionally get back ache if sit for too long, or wake with back ache which luckily I can relieve by standing and walking around. ( At the moment) I could not sit or drive all day.

I struggled with self-employment for the last 5 years and had to give up - mainly because of the uveitis, inflamation of the eye. I am again lucky as I am only now a few months now off retirement, but even one year without income, in these times, is not easy. How you must feel just starting off in a job you worked hard for (well done) and love I cannot begin to imagine. London especially is not a cheap place to live. Could your skills be re-deployed? Maybe a you tuber or blogger of London.

While searching around to find out how to best manage and miminmuize my joint damage I found this which might be of interest.

https://spondylitis.org/about-spondylitis/treatment-information/exercise/

After dithering about for a year ( like you, rather apprehensive) I started on drugs this week, so early days. If it stops any further joints from fusing, I Now accept, it is a price worth paying. A local phamasist tells me he issues it on a regular basis, so other are ok.

Take care, Nfk gal

stickywicket

As regards remission and DMARDS, I don't expect any. I think (and this was certainly so for me) that most remissions occur in the early years. I was dumb enough to get RA in 1961 when there were no DMARDS. By yhe time I got to methotrexate I'd had RA for about 30 years at least . So I also had OA too by then. I never expected remission but the disease progress was definitely slowed. Given that RA can also affect internal organs, I'm very pleased about that.

SherbetDab

Hi @Nfk_gal0617 thanks for the reply!

Thanks for the link will give that a read. Exercise has gone out the window for me the last week and it's driving me mad! Strange how each day is so different, one minute I'm unstoppable, the next bedridden.

Sorry to hear you gave up on self employment - it's great having the flexibility to work for yourself but the unpredictability of illness adds to the stress! I may explore other avenues such as tour guiding within London, it'll get me out of the cab and walking around and hopefully I can keep the cab too.

I'd be interested to know what meds they offered you considering we have a similar diagnosis, although would I be right in saying you don't suffer too bad with your back?

Cheers, stay well 💪

CCM

hi, @SherbetDab I was away over Easter so have only just caught up with my posts.

I have had no issues with Adalimumab and it is efective. As for infections, I have stuck religiously to my one cold a winter routine, at least until this year, when I had Covid over new year. Only mild and over in three weeks. Worst thing was coming off the Adalimumab until no more positive tests. I suspect I could have carried on with the jab as the Covid was mild, but my nice RA Nurse who has supported me so well thought otherwise.

Best of luck.

CCM

Nfk_gal0617

Hi again Sherbertdab, Meds I was offered. When I first suffered with very swollen big toe and top of foot I was given seriods, which worked. However these are not a long term solution. I had not been diagnosed at that stage, all bloods were coming back negative. My foot was like a plank, stopping me walking any distance. I was putting on weight from not walking and also I think I comfort eat as I was so fed up. Because of any lack of markers and my foot ex ray showed some oesto in my MCP joint, my GP put it down to Oestoarthritis.

Moving on a few months dispite the heat, swelling and thankfully the shooting pains had gone, my foot remained like a blank and I was still having trouble walking hence making my hip and knee painful. GP referred me to orthopedics for correcting foot beds. While waiting for the appt my wrists became very painfull which was a nightmare. Difficult to drive, use a keyboard, dry after a shower, get dressed etc etc.

Orthopeadics refered me for a Rheumatology appt and prescribed Naproxen - which my GP was not happy about because of early heart problems in my family but agreed until I saw Rheumatology. Within 4 days of taking Naproxen, an anti inflamatory, my hands were working, this was not oesto arthritis and I suspected inflamatory arthritis.

Hence more than a year on from one swollen toe and painful wrists I had a very unsatisfactory Rheumatology appt - I T was not working, consultant could not get x rays or blood results up and was constantly inturupted by the IT help on the phone. His parting remark was ' If your GP thinks you need methotraxate get him to re-refer you'. He did not give me a diagnosis, but I came home and did some research.

GP weaned me off of Naproxen, luckily my wrists had not gone the same way as my foot and remained pain free and regained function. At the same time I had my third episoid of Anterior Uveitis and I asked my GP for a HLA B27 blood test which linked inflamatory joints and eye inflamation. Hey presto positive - It felt a relief to have a handle and confirmation that this was not Oesteo.

For about 3 years my joints were quiet, however my right eye remained a problem which was treated with steriod eye drops which made working difficult. I would start off with hourly drops and tapering down to one a day over 6 weeks. One eye consultant refered me back to Rheumatology for systemic treatment to try and get these flares under control.

Post covid last summer joints started to play up again, different ones, fingers this time.

I have now started on Sulfasalazine, after waiting 6 months to see Rheumatology again. Second week in so not up to full dose until May. I am hoping this will stop my joints from fusing, only four digets fussed at the moment and luckily not in my back yet, just a bit ache from time to time.

I hope you feel able to start treatment soon. I wish I had started sooner, as from the reading I have done, immune suppressants are the only thing that has a chance of stopping any progression.

I think it is important to do as many range of movement exercises as possible, but not to go too mad on impact exercises, especially during a flare.

Hope you are having a better day today.

Nfk gal

https://spondylitis.org/about-spondylitis/treatment-information/exercise/