RA and how it changed my life

I am a serving police officer who is now all of 37 years old. RA and the various auto immune diseases are slowly destroying my life.

At 27 years old I was extremely fit and active, cycling in excess of 250 miles a week and attending gym sessions every night of the week. I had a resting heart rate of 48 bpm and felt on top of the world. Initially i developed Graves thyrotoxicosis (over active thyroid) without any idea i was about to be hit. I was at work and nearly collapsed with exhaustion during a 500 metre run (something i used to breeze through). Over a matter of less than a week and i had lost nearly a stone in body weight and was waking up covered in sweat when i could sleep. I attended my GP who put me on carbimazole, once the condition had been confirmed. Over the next two weeks i was to lose a further 2 stone in body weight, my heart rate sat in a chair was 120 bpm. It took some time but eventually my condition was stabilised. I though i was over the worst, however much more was to come.

The same year I had lower back pain, i put this down to a possible pulled muscle. The pain stayed for several months and nothing seemed to happen, it eventually got worse and i developed a heavily bloodshot left eye. The pain was intense and after two days visiting the James Cook eye casualty department i was diagnosed with Iritis.

I referred myself to the Nuffield hospital for physiotherapy on my back, strangely enough it was the physio who refused to touch me without the direction of a rheumatologist. My employer at the time paid for me to see a consultant, following a hot blood test I was diagnosed as being HLA B27+. The rheumatologist told me i had rheumatoid seronegative spondyloarthritis.

Over the next twelve months I discovered that could not take various anti inflammatory drugs. Another bout of iritis followed, this time the inflammation was so great it stuck my pupil to the lens of my eye (in a keyhole shape). Eventually I managed to find a wonder anti inflammatory, VIOXX, this was short lived and withdrawn to be replaced by CELEBREX. This was also withdrawn and I ended up taking nothing as i was intolerant to anything but COX 2 inhibitors. My pupil eventually unstuck itself three years later.

In 2006, I moved to rural yorkshire and with it came a change of employer, but not job. Within less than a few months, my big toe joint began to swell up. It became so painful that i limped rather than walked. At first i got the usual reply from my GP, its gout. Eventually I was put back onto ETERICOXIB, which calmed things down.

In 2009, i began to have problems with pain in my neck. Shortly afterwards a bout of iritis followed, after a trip to A&E and two weeks of attending the eye infirmary they injected into my eye to try and reduce the inflammation as it did not respond to other treatment. Fortunately this worked and ended up avoiding surgery and possible loss of sight. Following a meeting with my occupation health department i returned on light duties, with specific conditions not to drive any police vehicles. This did make me chuckle as i had to drive 17 miles to work every day in my own car, but that was okay (corporate double standards).

My rheumatologist put me on sulfasalazine, this did not agree with me. I felt like i was going insane whilst taking the tablets. I continued taking Etericoxib (120mg), until the higher dosage made me ill and effected my blood count. This was solved with a lower dosage, my rheumatologist did question why my GP had me on the higher dose for in excess of 8 months. Following six months clear of symptoms i was discharged, due to there being no rheumatologist taking over from my retiring consultant.

In 2011, I noticed kept getting ice cold hands and feet for no reason. I also kept sustaining muscle pulls and tears despite warming up before exercise. Half way through the year I injured my back during a violent arrest. I knew something was wrong at the time, both my hands went numb with pins and needles. I could not even bend. When i received physiotherapy from the Police treatment centre (a charity), they discovered a mid back injury. I can only describe this injury as constant pain around the T3/T4 areas. Since that time i have rarely had a day that does not have pain in this area. Eventually I had to take tramadol just to get some sleep. The toll of pain, drowsiness, constant tiredness, irritability, was too much. I began to wake up and my hands felt like they were someone elses hands, I had felt warmer corpses. I ended up off sick trying to recover and settle my inflammation down.

My GP managed to refer me to another hospital, where i saw a new rheumatologist. What a refreshing change to deal with such a thorough and effective department. I await my next appointment as it is Methotrexate or biological drugs coming up.

My employer however as a large public body, does not care, is not really interested, and tried to revoke my sick note. The main point of the occupational health appointment was to threaten me with half pay. In the current climate I hold out no hope, they need to shed jobs to save money. As far as integration for my condition there has been zero consideration as to the tasks they ask me to perform, except do not drive police cars (but i still have to drive to work).

At 37 years old, I feel like i have been in a car crash every day. The tiredness i experience is immense, my mind sometimes struggles to perform tasks it used to whizz through in milliseconds. My once solid motivation is just not there some days, yet very few understand so i am branded work shy and lazy.

19 Replies

oldestnewest
  • Oh James, I do feel for you. How traumatic all of this has must have been. I do so hope that things improve once you're on MTX or any of the other drugs. There are so many of them I'm sure something will work for you and a rheumatologist will know what to do. I cannot believe you've managed to keep going in your job at all. I couldn't manage my old job and have changed my lifestyle radically. I guess yours has already changed too. I wish you the best of luck - people don't understand, it's true. But we do on this site! Sarah

  • What a horrible journey. Many of us have struggled to get a diagnosis but your story takes the biscuit, and such bad luck to be hit with so many different things and for the RA to pop up in different places. But what seems so surprising is that after all this time the only DMARD you've been tried on is Sulphasalazine - they've given you some wacky non-steroidals for sure, but not anything else disease modifying. Hopefully you'll have better luck with methotrexate or other DMARDS. Unfortunately they all take time to work, so won't be instant relief but could really make a huge difference. I went from being virtually bedridden to getting back on my feet and able to do nearly most things I wanted - so it can happen.

    And it must be horribly demotivating having been such a fit person, and now not. But until you find a drug mix that works for you you really do need to try to look after yourself, and rest as much as you can. The tiredness from RA is really evil, and you must help your body as much as you can.

    And as far as work goes, isn't there a police union? You should be treated properly, especially by a public body! Polly.

  • We are not allowed to be Union members by law, we do not have the right to any industrial action, we do however have a police federation which i will describe as a toothless tiger or chocolate fire guard.

    Thanks for the support

  • Ah yes, I'd forgotten that. Chocolate fireguards could at least make a sticky mess, so may still be worth making sure they're aware of the poor treatment. If you do go down the DDA route at some point it could be useful to show that you tried every avenue first. Good luck. P

  • Hi James,

    How horrid! I was also a very fit and healthy, half-marathon running 20 something when I was struck down with various diseases including inflammatory arthritic conditions. I also had various diagnoses including gout along the way! Also severe lower back problems L2/3/4 :-(

    I agree with Polly that it's shame that you've waited a very longtime to be offered another DMARD. It sounds like you've now got a rheumy team behind you and things should get moving for you with regard to treatments. You will find the right combination of drugs for you and you will feel much better than you do now - it just takes time and a committed rheumy team.

    NRAS have some very good booklets about working and what adjustments you're entitled to expect - 'I want to work' and another one for employers. Coming from a military and police family myself I know how inflexible the 'system' can be and the pressure to be 'fit for the job' - it can be very isolating to be outside of the normal work situation. Also the current climate with reductions in force numbers can only be worrying for you. However, it's important to stress that you can be better than you are now and you need to hold onto the fact that this is not it:-)

    Do make sure that you have adequate pain relief, it's too miserable not to have this under control.

    Keep on blogging - there's plenty of support on here for you:-)

    Cece x

  • James there is very little i can add to the other comments, your story shows a catalogue of failures from both medical staff and your employers. I hope you keep blogging, you have obviously got great inner strength to keep active and working despite the vast problems ra has thown at you.

  • James, thanks for doing the blog. Extremely well written and concise.

    We are all very well aware on HU of the lack of understanding shown by employers. I suppose you look well enough despite all that has gone on.

    You sound like a fighter, so keep going, although it is so hard sometimes.

    Keep in touch let us know more. It really does help, when others empathise truely.

    Gina.

  • Hi James we can all relate to the things you have written but i bet you anything once they start you on MTX ur life will change for the better

    keep us informed of your progress

    debs xx

  • James I am so very sorry you're having all these problems at such a relatively young age. Your story is so familiar to me (back pain, raynauds, but not iritis). I work for the NHS (another public body) and have experienced pretty much the same treatment. My job was subject to NHS cuts last year (although they won't make me redundant!), at the same time as being diagnosed with RA ,and for the first time in 28 years service I had to take some time off due to feeling so unwell and in pain. Colleagues/managers seem to be oblivious to what you're going through and although they ask how you are out of politeness they don't listen to any response other than 'ok thanks'

    I really think/hope you will be okay on MTX if Sulph doesn't suit (I react badly to MTX but ok on Sulph).

    I too used to be really fit (gym/running etc) but still manage to cycle daily and walk a distance when my feet aren't too painful, so you may find alternative ways too, when things settle down (they say swimming is excellent, but just don't like it much myself).

    This site is a haven when things are tough, and you'll always find someone to genuinely listen to you here :-)

  • James,

    You have just met some of the "cream of the crop" of responders here, with all the best advice and encouragement. This is a large group of people your age, some a little older, some a bit younger, so at various stages of treatment for RA.

    Methotrexate is the first-line defense we all meet. It makes a great difference, but may take from a few weeks to a couple months, slowly, gradually, till one day you can look back and say, " I sure couldn't do that a month ago..."

    I sure do understand the work situation! No matter how many friends on the force, or how complimentary your boss, when it comes down to performance, that is what they measure.

    Talk to your union president. Perhaps they could work you in to an office job, as a school police guard, or teach technique and procedures at the Police Academy, or etc... That may not be as negative a situation as you imagine.

    Many of us here tell stories of how we had to adapt our lives and careers to accomodate this evil invader of our bodies. But, adapt we do. Take your meds, including pain meds, stay on a schedule with the pain meds, so you take the next dose within the guidlines, every 4-6 hours, instead of letting it wear off and have to start over. Prevention of pain is far better than trying to cover it once it has taken over. With scheduling, you can be more comfortable throughout your work day, which will thus help with performance, and give you more enthusiasm.

    Hope you have gotten enough encouragement here today to help you do whatever you need to do. We all wish you the very best you can be! Loret xxx

  • Thank you all very much for the support. So far I have found RA to be a very harsh disease, but the depression is the hardest part to fight. I try not to think of the future too much, it is too easy to worry about what could happen financially.

    At present i seem to be getting nowhere with my employers, fortunately I have researched the disability discrimination act and I am prepared to put them on the spot shortly.

    The meds is a different issue. I am intolerant to ibuprofen, diclofenac, and its derivatives. My stomach and IBS suffers with codeine based drugs, things such as paracetamol are just too weak. I am taking Tramadol on a night, but i cannot take it during the day as it makes me very sick and I cannot drive.

    As far as the blog goes that is just a brief summary, to be honest it gets me angry to list everything. I have always tried to remain active despite the various set backs, I am not entirely crippled just yet, but I will go down fighting. Fortunately I think my new rheumatologist is very thorough and may be the one to help me through this.

  • Hi James,

    Firstly we live in the same area and I chose however to go to North Tees University hospital as I work for North Tees and so far have had lot and lots of support from my managers ! I used to be the Nurse manager at the Infirmary too a few years back and it was them who notice my recurrent iritis and episcleritis and referred to to Rheumy. at first though they said I didnt have Ra as my bloods were sero negative, but then I woke up with it bad!!

    I got free counselling support which I resisted initially but they did CBT about coping with pain which really helped me cope with day to day problems. They also helped me change the way I took painkillers which was to wait on getting pain, take painkillers, suffer until they worked, then build up pain to next ones. Now when i'm sore I take them regularly before the pain kicks in too much.

    I hope the hospital, as mine did ,start the new treatment for RA soon, and you will find they have a protocol on what they can give and when as they are guided by health mangers such as NICE . If you go onto NRAS publications of helpline they will send you leaflets such as on biological treatments or your rights as an employee. You do have rights even as a cop!! But this booklet will give you a booklet you can give to your boss so they can see what you need.

    I visit the occupational health at my work and they send a report to my work as does my GP and occupational therapist and my rheumatologist, as I am now just finished on half pay. You can claim incapacity benefit when half pay runs out and if you look at the department of work and pensions website or the NRAS website there is lots of help there for you. Also the NRAS are running a conference for patients and carers in Newcastle soon and I think me and my family are going to see what help there is in the North East.

    I agree that some people just dont get it and think you are being "lazy/" BUT all of us here dont agree!!

    Keep blogging, hope things get better for you soon

    Axx

  • Wow you have had it tough where do i start to imagine what youre going through, you have had so many problems but i guess being a policeman made you a bit tougher, it seems like youre employers are a bit rough but just throw the disability act at them it will keep them off youre back for a while so you can get youre health problems sorted. I hope you can get a good consultant and rheumy nurse they are a god send and should always be on youre side. don't forget to keep all correspondance from youre nurse and docs you may need these later on! also, try and get an occupational therapist on youre side from youre hospital ask youre gp to refer you she/him is also a godsend. i myself started methotrexate last nov and am now on 20mgs tablet form however, my next visit is to the specialist is to start injections of methotrexate as i like yourself cannot tolerate the tablets if you read some of the blogs on here there are lots of us on this form of medication.

    Tramadol is also a godsend when the pain is really bad as you have found out.

    I have just had my apeal for esa yesterday at court and won! that is why i have told you to keep all correspondance from anyone and everyone you will need these later on . please keep us updated and hope you can look ahead to a better future!

  • Dear James.

    I read your blog last night, but I didn't reply last night as quite honestly I didn't know where to start, and I'm sure others have found it hard to reply to you too; just how does one start to comfort someone that has been through what you have. Your blog was very concise and I hope that it did you some good getting it all down on paper (as to say), I find that having the ability and avenue to get ones thoughts down is a good release.

    You sound as though you had your life just how you wanted it and had obviously worked very hard, both professionally and personally to achieve your goals. To choose and achieve such a career is a great credit to you; you must be a very strong personality to have achieved it.

    What you have been through, indeed still going through, is the same as a bereavement. You are having to come to terms with so much; the loss of who you were and come to terms with who you are now; both physically and mentally and the apparent downward spiral of your career or at least changes to it to which are out of your control. As with any bereavement you are going through all the normal stages, and I strongly suspect that you are very angry at the moment.

    I can see your points of view with regards to how you are being treated at work, and whilst I am in no way at all condoning it, I also know that even though you work for the public sector, which is largely believed to be a secure working environment with no prejudices at all, in reality the powers that be (especially at this time of financial hardship) still have to run it as a business. Have you actually sat down in a non confrontational way to talk to your bosses, personnel dept etc to discuss your future in the force with your health problems and how they see your future? If not maybe this is something that you need to arrange and take a trusted colleague with you as a witness.

    I know that the public sector offer all employees private counselling seasons, but can I suggest that you instead contact your doctor and ask for counselling through that avenue, just so your records can not be accessed without you prior permission.

    May I ask what family support do you have, you don't mention family at all, and to have some background support from family/friends is invaluable? Are you married, have a partner? The only reason I ask is I wonder if in addition to everything else you are feeling, you have the stress and worry of how you are going to continue to support a family?

    Please continue to get your thoughts (and any questions you may have) published here, there really is a great Varity of personalities and backgrounds here so replies tend to cover all areas.

    May I wish you the very best.

    Regards Mel

  • Dear James,

    I was saddened to read your blog you have been through so much.!

    . Though older than you my journey has had ups and downs, I couldnt tolerate sulfasazaline either, I am hoping that with the right treatment your quality of life will improve. I too take eterocoxib.. the maximum recommended dose is 90mg.. not sure why you were given above that dose, that is bad x

  • Hello James - nothing to add to what everyone has been saying here - just wanted to offer the same sentiments as others and to say that I think, from your very articulate, precise tone, that once your disease is controlled by the right medication, as I do hope it will be soon, this awful journey you've had will in someway turn itself into a more positive outcome for you. I feel sure the only way this can go now is upwards for you. Take care and stay on here with us - it's the best place to be. TTx

  • Hi James

    So sadden by your tale, I hope they sort you out a dmard or two and eventually controll your ra.

    Good luck for the future

    Sci :)

  • I spoke with my Federation representative today, he will be appearing at my next appointment with the organisation doctor. He was very guarded and warned me that the organisation may see this as a way to dispense with my services if they do not have a role to allocate me. It seems that one time certainty of them redeploying staff into other roles is clearly long gone. It would appear it is now cheaper to pension somone out (as the pension fund pays this) rather than pay their wage.

    We are looking at some kind of strategy to deal with my employer in line with the disability discrimination act. I suspect the reasonable adjustment offerred will not be reasonable, but we will see.

  • Hi James. I read your story with interest as I am also a serving officer (34yrs old) and have recently been diagnosed with RA. I would be keen to find out your experiences in some more detail, as I too am concerned about employment matters.

    Due to the nature of such issues and that this is a public forum, would you be willing to email me on wb101977@gmail.com ?

You may also like...