The invisible disease

[ThomasTom]

Hi I’m just reaching out really to say how hard it is to work with RA. I’m totally on track with my job, but the bouts of fatigue are severe around now as I’m pushing my body to its limits (im a gardener). I sleep because of the Amitriptyline, it also helps mentally to stay positive. I also take Hydroxychloroquine, (side effects - amongst others - can include irritability, muscle pain and potential eye problems). I’m wondering if I should give the Hydroxychloroquine a rest... but then one should never read up about side effects!! But my hands are worsening and I have plantar fasciitis in my left foot having finally gotten rid of it in my right.

Seriously I have no self pity, I know my days working in this huge but beautiful (commercial) garden are numbered...

I’m in County Durham — recently the Rheumatologist I’ve been with for about 5 years has moved jobs. Because I’m classed as ‘being in remission’ (because I work) I have limited access to services and will have to wait until September or October to see a locum. So this site is good back up.

I guess I feel lucky that I can work, struggle through Pilates, walk the dog, deal with feeling like I’ve been run-over first thing in the morning— show up, do something I love, it’s just a day at a time. But I know maybe I have to look for an easier job sooner or later.

[Gnarli]

I stand in awe of anyone doing such a physical job for such long hours, doing pilates and walking a dog whilst having RD. Give that amazing gardener a great big medal! I couldn't advise on the benefits of hydroxychlorquine but wonder what your life would be without it. I like to have a plan B, you know - just in case as none of us know what the future holds. I wish you all the very best

[ThomasTom in reply to Gnarli]

Thanks (I’m working on plan B!) 🙏🏽

[Suzy95 in reply to ThomasTom]

Hi Tom. You don’t have to soldier on in pain as a a stronger treatment could be required.Inflammation causes fatigue and you could feel a lot better. Is there a rheumatology nurse specialist that you could contact? Try to rest a bit a more and you don’t have to do it all . Hope you feel better

[JFlay]

Hi, could your GP refer you back to rheumatology more urgently? or could you ring them yourself to get it moved forward? Maybe another DMARD is required or needs adding? I don't think you should be classed as 'being in remission' just because you can work as you are clearly struggling 😟 Ironically, I gave up my own stressful business and am now a volunteer groundsman (woman) gardener 😂 it knackers me some days! but no stress.

[helixhelix]

I don’t think you need an easier job, I think you need a better rheumatologist! Even if the numbers say you are in remission, a good rheumatologist should look at and listen to the person. Hydroxy is a comparative gentle drug so maybe you have outgrown it and need something else? Start keeping a diary of the way the disease affects you in preparation for your (eventual) appointment.

[ThomasTom in reply to helixhelix]

Good advice. Thankyou.

[ABwn]

Good luck - you sound very positive.

[girli1111]

I was fairly ‘stable’ on just hydroxychloroquine for about 13 years, but more recently methotrexate has been adde to the mix. My job is not as physical as yours, but I am on my feet all day working with 3-5 year olds in a large infant school setting. I don’t really have any advice, just showing solidarity really! I keep thinking about what else I could do work-wise..... I love my job! I did reduce my hours a year or so ago down to three days and this has made things much more manageable for me as fatigue is my main symptom, (although one of my hands is becoming increasingly unreliable and painful!). I think you should seek a re referral to review your meds, best wishes

[ThomasTom in reply to girli1111]

Very grateful for the solidarity, makes me think options that reduce hours are the best — especially in winter. Take care & all the best to you

[TPaine]

Hi, I agree with Helix that it sounds like you need a proper review of your condition and medication to try and enable you to remain active and functioning as much as possible. For you personally it sounds like you are beginning to come to terms with the idea that some changes are likely to be needed which is a positive as this will help you then managing these for yourself. Struggling on only means potentially more joint damage so working with your rheumatologist to get better drug therapy is important. When I was first diagnosed I was just on sulfasalazine and initially once it kicked in it worked faintly well for me and I was ok for a couple of years, then it was less effective. MTX was then added in 3 years back with no real improvement as I was flaring a lot and felt awful all the time. Adding in benepali (biologic ) has really helped but I still know I can't do a full time job if I want to remain stable, be able to walk my dog and be a pleasant partner to my hubby. I guess you need to review what you can do, need to do and want to do and then try and see what you can reduce to help your body while waiting for a medical review. I know as most people here do, how hard it is to accept and adjust to changes this condition forces but sadly we have to. For me it took a long time to accept but now I am in a better place and live with my condition rather than fighting it!

Good luck with it!

[ThomasTom in reply to TPaine]

Really helpful thankyou. I’ve been telling myself that if I slow down I’ll fall apart... silly really, but I think (men)... I tend to feel we have to forge ahead without thinking too much. I’ve probably avoided things too much which as you say is a form of denial. It’s been 10 or so years with OA in my back, and about 8 years since my RA diagnosis — the Rheumatologist thought it was psoriatic Arthritis but I’m still unclear why since I don’t have skin problems, but I just went with that and the progress has been slow, but lately steady which I think has to do with this job outdoors all year, quite heavy work. More flare-ups etc. Thanks again for taking time to reply. 😃

[Recorder500L]

Wow, I think that you are amazing to continue with your work as a gardener. I really struggled with working in an Office for 28 years, no way could I have done gardening. I don't see how you are in remission just because you are working either. I have never been in remission and know how so very difficult it is to rally in the morning to go to work; trying to get fingers to type when they are so swollen and painful. I guess you are working outdoors in all weathers too. Ask your Rheumy for an urgent appointment to maybe get different medication. I was speaking to a cousin of my husband's who is was a Practice Nurse at the beginning of the week. She commented that people with RD who struggle so much to get up and washed/dressed who put so much effort into looking smart and well turned out for their appointments. It is to be commended and noticeable.

Plan B maybe.

[ThomasTom in reply to Recorder500L]

Thanks. I’m hoping I get to see the Rheumatologist soon, but where I live there is a very long wait to see specialists. When the medication review is put back to 6-8 monthly (the meds are supposedly working) then the Rheumatologist reports to your doctor or on your records that you are in remission or a none urgent patient. Really appreciate the support! Thankyou

[Recorder500L in reply to ThomasTom]

Can I just add that as a patient you can choose to see any Rheumatologist, even out of your area that you wish to see. If you can and I know not everyone can; pay for the first consultation and at that appointment ask to continue seeing your chosen Rheumatologist on the NHS. You will get an appointment within 2 - 3 weeks.

[oldtimer]

The last rheumatologist I had kept telling me that I must have psoriatic arthritis because of the way mine behaves but without any skin lesions how can we tell!

I was also on hydroxychloroquine for many years and managed to work, but eventually got too ill and retired (I was 65) and since then have found that my joints have been damaged because of inadequate treatment.

Like you, I think I just worked through the pain and coped. But that may not be the best policy now so much better treatment is available.

Perhaps it's time to take a fresh look at available treatments. A new consultant may be just what you need.

[ThomasTom in reply to oldtimer]

Thankyou- lets hope a change of specialist works!