Psoriatic Arthritis

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Annfield
Annfield Member Posts: 28
edited 22. Nov 2019, 05:34 in Living with arthritis
Hi. I have had Psoriasis since I was 13 years old and Psoriatic Arthritis since my 20's. I know people with Psoriasis but I don't know anyone with Psoriatic Arthritis. No one I know had heard of the condition until they met me. I am now in my 50's and flagging. I work full time, long hours and shifts and I am really struggling physically and emotionally. How do you cope with this horrible painful condition. I like my job but it can be physically and mentally demanding. If I could afford to give up work I would. I have no social life or hobbies because I'm knackered all the time and in pain. I'll take sympathy, empathy and advice. All comers welcome. If you have read all of this thank you t69044
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  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    I have a great deal of admiration for those who mange to keep on wórking despite their arthritis. I was diagnosed at15. Mine is RA but, for years, they tried to convert it to PsA :wink: as my mother had psoriasis. Stubbornly, my body refused to oblige with any.

    In the absence of modern DMARDS, I had to stop working after the birth of my first son. I guess it was easier because, from the start, we only had one wage coming in so could plan our lives accordingly.

    Must you do the work you do? Could you, maybe, do something easier or lighter and cut out some things to compensate? Life with arthritis is always difficult and brings on successive difficult decisions. But we can't live as if we didn't have it because we do.

    I hope you can find some way of making things easier for yourself.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello, I have PsA but without much of the psoriasis. I began when I was 37 and am now 60. For the PsA I inject methotrexate and humira which usually control matters but that all came too late to prevent the development of osteoarthritis. Hey-ho.

    The PsA began about a year after I began my own little business so work-wise I was fortunate as I had a very understanding boss. I have no idea how those who have to deal with 37 plus hours a week (often with heavy physical work thrown in) manage: I had it comparatively easy but the frequent times off for operation recoveries led to no income for up to three months, thank heavens for The Spouse then being in full-time work. Now we are both retired and it's just the hard yards of everyday living that now challenge me.

    What meds are you on and do you have anyone to take on a bigger share of the day-to-day chores that so often fall to the females? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi again Annfield (great user name! :D )

    Our website has a fairly comprehensive page on Psoriatic Arthritis which starts off with information you probably know all too well about the disease.

    https://www.versusarthritis.org/about-arthritis/conditions/psoriatic-arthritis/

    However, further down there are additional sections that make suggestions around self-help and coping with the disease. It goes on to provide some ideas of living and working with Psoriatic Arthritis.

    Grab all the help you can get by talking to friends and family. Let them know you are struggling and refer back to Grace111 list on the previous thread: be kind to yourself! :)

    https://arthritiscareforum.org.uk/viewtopic.php?p=659561#p659561

    Brynmor
  • Kim
    Kim Member Posts: 3
    edited 30. Nov -1, 00:00
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    Hello,

    I have PsA, my mother has psoriasis and I this among other symptoms is how my formal diagnosis was eventually made. I was officially diagnosed in 2015 but was suffering way before then. I work, I am a mum and I run our home. At first it wasn’t too bad, with treatment and having more energy I pulled long hours roughly over 5o hour weeks including weekends. But my PsA has progressed faster than I was expecting and I am now on my second biologic and this has recently become less effective too. I have had to reduce my hours and do a lot less around the house, just so I could keep going. Like you I am constantly knackered and in some form of pain. Today, it’s my lower back. I’ve had back pain since last Friday until today, Wednesday and it’s non stop even with pain relief. I panicked about having to call in sick but soon realised if I couldn’t get off the loo there was no chance of me doing a 2 hour round trip to and from work and getting out from the car and doing a 8-10 hour work day.

    Finding the balance is key. I haven’t found that yet, but I am working on it and I am hoping that as my kids get more independent and leave home and my other half agrees to downsize, that we can one day find somewhere to live where life is much less stressful and our need for material things are not as they are at present.

    Most important for me is to one day wake up pain free and not rigid, stiff or sore. This wretched disease is here to stay, (I unreluctantly had to admit this) but I have to make sure that it knows who rules the roost.

    I do hope you find your work/life balance some day soon and most importantly be kind to yourself.

    Best wishes

    Kim
    Best wishes

    Kim
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi everyone. Thank you for your messages. I would of replied sooner but I fell over yesterday and hurt my chin. I am always falling over. My consultant says it because I don't pick my feet up when I walk because I'm in pain.

    Are you a Liverpool fan Brynmor. My name is Ann I just added field and named myself after Liverpool's ground :-D

    I have felt so alone with this illness. Before I was diagnosed at 24 with a 5yr old i thought I was having a nervous breakdown. I thought it was all in my head. I work 40 hrs on a late shift and get the weekend off. I work 59 hour on an early shift and work weekends then I go straight on to a night shift which is 72 hrs then I get 2 weeks off. I'm well paid and feel very lucky and privileged to have my job. It can be physically demanding. I love my job but I am struggling. I find myself crying when I'm alone. I can fit my hospital appointments in around my working hours (and I have quite a few of them). I would love a bungalow or even just a downstairs toilet. I think the only time I don't feel any pain is when I'm in work and something happens and my adrenalin kicks in. I'm sorry other people have this illness but it's good for me to know I'm not alone and that there are other people like me. I've always fought it and stayed positive and was determined not to give into it but I'm tired now. I don't have the energy anymore.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I have to pay much more attention than others to the act and art of walking: I have been known to blank friends and my husband as my focus is not on looking around me, it's looking out for trip hazards which are plentiful. Wet leaves are particularly dangerous.

    You have not mentioned any medication or which joints are affected so it is somewhat tricky to advise about how to cope better as we don't know what you have tried etc. People ask for advice, we give it, only then are we're told they've done all that which, when one is poorly oneself, is very frustrating. Developing flexible thinking when problem-solving is a useful skill but hard to master. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    I have had Methotrexate tablets and I am now injecting Methotrexate once a week. 20ml which is soon to be increased. I could not have Methotrexate while there was a chance of me getting pregnant so I had a hysterectomy at 39. I have had Cyclosporine which did not agree with me at all. I have had Fumaderm which was for my skin as I have been hospitalised in the past for a month when my skin has flared. I get Psoriasis everywhere especially on my face. I have Zapain and Ibuprofen. I have had Gabapentin, Naproxen, Tramadol and Voltarol in the past. I had my wrists, hands and feet scanned today. My knees x-rayed 2 weeks ago and they look good apart from inflammation. I have a liver scan in November. I have Osteoarthritis in my hips. I have Psoriatic arthritis everywhere, even my jaw. I have Bursitis in my leg. I have a TENS machine which I love for my hips but its no good when I'm having a flare. I have hot/cold gels/sprays/patches. When all is good you would not think I had any of these conditions to look at me however, I always have some level of pain. I have been referred for hydrotherapy again. I have had it before and love it but the pool broke at the Royal Liverpool Hospital. I have been referred back to occupational therapy. I have also been assessed by Access to Work at my place of work and they have recommended things that my employer has implemented. I want to and have to keep working. I don't know what more I can do.
  • wazz42
    wazz42 Member Posts: 233
    edited 30. Nov -1, 00:00
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    Hi Annfield,

    Hi, you’ve really got a lot going on haven’t you! You are getting a full MoT, and quite right too. Hopefully it won’t be too long before your meds are tweaked and maybe retweaked to get you into a better position.

    For myself the day I actually realised I wasn’t alone was the day I started feeling more in charge. If I had something there must have been others who have gone through it and come out the other side so to speak and that was a game changer. Instead of feeling everything was out of control I could get back in there. Certainly it helps keep my head in a good place and I can recognise when it all gets too much and cut myself some slack.

    DD is right to think flexibly, sometimes the answer is there but we can’t see it, then a friend can remind us we’ve done something in the past and that helps.

    Xx
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi Wazz42. Thank you for your message. Until the last 12 months I have always felt in charge of my arthritis but I have never been in charge of my Psoriasis. In 30yrs I have had 2 weeks off work because of my skin and no days off because of my arthritis. I have had to stop doing things I loved because of it. I don't belong to a rambling group anymore and I don't walk at least 6 miles a day every day during the week and 10 miles on a Sunday in beautiful countryside with good company. I was never a big drinker but I don't drink alcohol. I had to give up dancing. Everything is such a big effort. I sleep a lot and have no energy. The little energy I do have I save for work. I am constantly looking for the answer to my pain and get very frustrated and upset. My mind wants me to do all the things I use to but my body wont let me. I will gratefully take any advice. I have just moved my bathroom from one room to another. I don't have a bath anymore as I couldn't get in or out of it or turn the taps on and off. I now have a walk in shower and love it. I sit on a shower seat and let the warm water sooth me. I am trying mindfulness. I am looking for a therapeutic swimming pool in my city but haven't found one yet. I have found a therapy pool but it costs over £50 a session which is one hour. If I went once a week that's £200 a month. I cant do that. I would love to hear what works for other people. I appreciate all the messages I receive. I am finding the support on here is really helping my mental state as you all understand and know what arthritis can be like. I never talk to anyone as I don't want to bore them or come across as a hypochondriac. I'm usually the straight talking funny hard faced mare that has everyone laughing just being me. People keep asking what have I done to myself because I am limping and I lie and say I've banged my leg. Usually when I am not in the room people think they have gone deaf because I'm a chatter box so everyone keeps asking if I'm ok because I am quiet or they think I am upset when really I am in pain. This is the most I've said in weeks. I'm finding it odd that I can open up to complete strangers. I am very guarded about my private life. :-?
  • frogmorton
    frogmorton Member Posts: 29,493
    edited 30. Nov -1, 00:00
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    Complete strangers who 'get it' Ann that's why you can open up.

    Just incase you'd want to I did one of the old Arthritis care courses 'managing your long term condition' a few years ago.

    If you go to the top of this page in Grey are several words click on the one with 'in your area' and put your postcode in it will tell you what is nearby.

    There might just be a course to help ((()))

    Toni xx
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Thank you for all the info, Ann. It does make for a clearer picture.

    You have a long list of meds there but only one DMARD – methotrexate (apart from the cyclosporine which you no longer take.) The others might help with pain and the ibuprofen with inflammation (a little) but many of us who have autoimmune forms of arthritis need two or more DMARDS. This will depend on how far your pain is caused by uncontrolled PsA and how far it's caused either by OA or simply by overdoing things.

    In my experience there's no such thing as a pain-free day with an autoimmune arthritis but there are days and times when we are able to override much of the pain simply by becoming absorbed in other things. The more we concentrate on the pain, though, and on the unpleasant things and losses it has brought or might bring, the more keenly we feel it.

    I'm getting the impression that psoriasis has been a very big problem for you for a long time. Maybe, because of that, you have seen the PsA as an unfortunate add-on and more easily controlled. But, sadly, that too is a big thing and won't be relegated to the background. Like all of us with autoimmune arthritis, and many with OA, you have had to give up many pleasures. OK, they're gone, but something has to take their place or there will only be pain and misery in your life. There has to be some balance of pleasure and I have discovered there are always new, fascinating avenues to explore.

    Your work sounds extremely demanding even for someone in peak health. What is the point of it if you have no relaxation at all? I have always maintained that the key to living with arthritis is to be prepared to adapt and to constantly relinquish some things in order to gain others. This often involves a leap into the unknown – scary but actually quite exhilarating. Many forum members have had to change or at least modify their work. Don't rule it out.

    I think you've taken a big step forward by opening up to us but I am concerned that you don't appear to open up to anyone in 'real life'. No-one can constantly be the life and soul of the party. It's far too much of a strain. Why not tell the truth? Arthritis is nothing to be ashamed of. I have it everywhere too (apart from the replaced bits). My jaw barely opens and my dentists struggles with me. It's OK. It's not a big deal – though it possibly is for her :wink:

    Stress makes most diseases worse and that's certainly so with arthritis. It's a vicious circle – yes, arthritis can cause stress but stress makes it worse. The circle has to be broken . There are several ways to do this – meds, physio, lifestyle, diet. - all have a part to play and none should be ruled out.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi Guys. The first thing I did when I found this site was look in "In Your Area" for support and there is nothing. The Osteoarthritis is in my hip and the recent steroid injection I've had takes care of that. I bought my TENS machine for my hip pain and I love it but neither of these things help with Psoriatic arthritis. The flare I am having now is the worst I've had since I was first diagnosed. I most definitely need to look at my diet. I comfort eat. I have a very sweet tooth. I don't eat meat, fish or eggs. I have lived with some level of pain for years and its never stopped me but this has floored me. I work with all men. I am the only woman that does my job. If they get a paper cut there are tears. :D My Psoriasis has been a very big problem although because of Methotrexate you wouldn't know I had it. The job I do now is the longest job I've ever had. I have done lots off different jobs over the years. Before I got this job I had 3 jobs. I had a divorce to pay for. It would of been cheaper if I'd hired a hit man :lol: I've had lots of roles in the company I work for now. I have also moved around and I haven't lived in the same house, area or city all my life. I'm not afraid of change. Life has thrown a lot at me as it has many other people. I just cant find my solution or happy medium with this at the moment. The rheumatology department is getting hammered with patients. My GP basically says just get on with it. I am just getting on with it but I need a bit of help at the moment to just get on with it. Thank you so much for your messages it really does help t69044
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    GPs do not deal with auto-immune arthritis and every rheumatology department in the country is struggling as it is the one are where patients are only discharged when they die. People are living longer, GPs are more aware of how an auto-immune arthritis can present so quicker off the mark in referring, there is no cure, just disease activity control to slow the inevitable progression and degeneration of the joints.

    I have never been treated by merely one DMARD, very few are and I can count on one finger the number of people on here who have had effective treatment with just meth: effective as in minimum everything. For the rest of us it is usually a cominbation of meds to control disease activity, pain levels of varying intensity and yes, just getting on with it. I suspect your expectation of what the meds can actually achieve is too high and you're not alone in that, everyone expects and wants more than is possible.

    I am in my 23rd year of the nonsense and tell people about it to broaden their knowledge and awareness. Mine is broad enough but there are many misconceptions about arthritis amongst the general populace and they need educating by those in the know. PsA damages joints in a different way to RA as it effects the entheses whereas good old OA (my preferred version) just rots the joint from the inside out. I can manage my OA to a certain extent by not overdoing things or eating too many acidic foods, but I cannot control the weather which has a big impact at times. Spring and summer aggravate my PsA, autumn and winter the OA. Diet has done nothing for my PsA but it can make one feel as though one is making an effort to improve things and the placebo effect is of psychological value. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi Dreamdaisy. I do not expect to be pain free. I have not been pain free for over 30 years but I would like to be able to walk without struggling, to be able to lift a cup just simple normal things like putting shoes on. My shoes are made by the hospital. I know I will always have some level of pain but the pain I'm in now is not acceptable. I don't think my expectation of how I can be treated is too high if there are other meds that can be prescribed for me. My Methotrexate has been increased from next week so I think my consultant is hoping that will make a difference. I have only ever been on one DMARD with Naproxen, Tramadol and now Zapain. Until about 3 months ago I rarely took pain killers now I cant get out of bed without them. I had a steroid injection 3 weeks ago. I am the same as you in that my Psoriasis is worse in summer and OA in winter. I suppose we are all different regarding what works for one person may not work for another. We all have different pain thresholds. I deal very well with pain but not at the moment when every part of my body is hurting. :(
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I know that feeling well, I have spent most of the summer in bed thanks to a change of medication (humira to the bio-similar imraldi) which allowed my PsA to flare (no skin trouble, the meds still suppressed that) but now I am back on what I had so hopefully things will now be better, i.e. I return to the giddy heights of moderately grotty; the flare is already in retreat after two injections of humira.

    Has your rheumatologist suggested adding in another DMARD or trying an anti-TNF etc? It sounds - and forgive me if I am wrong - that the developement and/or worsening of your arthritis is relatively recent, say the past year or so. I did PsA the other way around, beginnning the arthritis nine years before my first bout of pustular psoriasis on my palms and soles. I have used walking aids since 2002, now use a handleless, silicone-cased mug because it is easier to hold: as things have deteriorated I have made changes to help me do more with less physical ability. I miss my old physical life (even thought that wasn't great) but so what? As I tell my husband, arthritis is a case of mind over matter, I do mind but that doesn't matter. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    My consultant has never suggested anything else. When I was first diagnosed with PsA at 24 it was really bad. I had a 5yr old so wouldn't and couldn't let it take over. I attended hospital 3 times a week. Then it calmed down. I have always had pain but I could cope without pain killers. Last summer I struggled and this year is worse. I'm not feeling too bad now but I have been off work on leave for nearly a week so I can relax and take things easy. I tend to sleep a lot when I'm not working. I'm sorry you have pustular psoriasis. I cant even imagine what that's like. Stupidly I never used the aids given to me by OT and they did tell me I needed to protect my joints. When you are young and you get better you think that's the end of it. I can live with this pain. It wont get any worse. They also told me "use it or lose it" and I think I've used it a bit too much. I have always been obsessed with my skin. If my skin was ok then so was I. All I get from the hospital is that I work too many hours. Can I reduce my hours. Can I go part time. Obviously I would if I could. Although I like my job there are many days when I wish I didn't have to work...……...Ann
  • wazz42
    wazz42 Member Posts: 233
    edited 30. Nov -1, 00:00
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    Hi,

    Have the rheumatologist team organised all your scans and such? Why not give your rheumatologist nurse a ring (or your rheumatologist secretary) and explain just how bad it is right now, they are people you need to open up to as well, they need a clear picture of what’s going on and how it affects you.

    Is there a way you could take some time off work? Even a couple of weeks to rest, recuperate and take stock so you can see more clearly a way forward must help. I feel carrying on as you are could lead to you having to take time of in a crisis kind of way which could be longer.

    Frogmorton suggested taking a course but there are none near you, I’m pretty sure there are online courses available. Would you like me to have a look?

    You might like to ring our helpline, the number is 0800 520 0520 and they are there until 8pm weeknights.

    Take care
    Wazz x
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Hi Wazz42. I would love to do an online course. Thank you for your help. I rang the consultants secretary last Wednesday after my hands and feet scan. Someone with a different name rang me back Friday and left a message saying they would call again. My Methotrexate is being increased this week. I think the consultant is hoping the increased dose will help. I got up this morning and felt my "normal pain". I haven't taken any pain killers today. I have been off work on leave for a week so I have been relaxing and not doing a lot so this may be why I'm feeling better today. I'm off work next week too apart from one night shift I am working for a colleague. I am just concerned that when I get back to my normal work routine that it may flare again. I'm going to see Romesh Ranganathan in Manchester tonight and I will be taking pain killers with me as I we will be walking around the city before the show. I hope I wont need to take any. My friend is very supportive and understanding and knows my limitations so I wont feel any pressure to keep up. Last week it hurt when I laughed as my ribs were hurting too. Its a good job I'm feeling better as I hope to be laughing a lot later on m0150
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Annfield wrote:
    I'm not feeling too bad now but I have been off work on leave for nearly a week so I can relax and take things easy. I tend to sleep a lot when I'm not working. ..........

    All I get from the hospital is that I work too many hours. Can I reduce my hours. Can I go part time.

    It does add up, doesn't it? You seem to have given up all your beloved leisure activities and are now left with just unremitting work and stress. I wonder if it's worth it or if there's another way. Could you discuss options with either our Helpline people or CAB or both? Surely, if you carry on as you are doing you can only get the same results?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    Stickywicket You are right, however if only it was that easy. I feel I am too young to give up work. I'm 57 in December. I have a mortgage which I am massively overpaying and a pension which I am massively overpaying so that when I do finish work I wont be in financial difficulty. Also by overpaying it gives me options to possibly retire earlier. I officially retire at 67 but I have always known I wont make it and that I will retire before then. Believe me I have looked at all my options and I have arrived at the best solution for me. If I can work until I am 63 I will be ok. You never know new meds might be here by then :lol: I have worked too hard for too long to throw the towel in. A colleague I worked with took medical retirement 5yrs ago. He's the same age as me. He had operation after operation so really had no choice. He rented a bungalow for 6mths then bought one. He is still in pain, hates where he lives but loves the bungalow. Finances dictated where he bought it. He is no happier and now he isn't working he misses it terribly. He does voluntary work. Financially he is limited and cant afford to do the things he can do and that make him happy very often. He never goes on holiday and feels like he is just waiting to die. He is very down and depressed. He says he struggled in work but he was happier in work. The grass for him is not greener and life in his opinion has not improved. I wont have to leave where I love living in a quiet suburb. I will make alterations to my home to accommodate me. As an aside Romesh Ranganathan was brilliant last night. I'm going to see Eddie Izzard in Liverpool in November.
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
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    Does it have to be all or nothing? I can understand you not wanting to give up work, and your financial strategy, but if working at your current rate is causing health problems do you not run the risk of precipitating an even earlier retirement than you currently envisage - and possibly in much worse health? Have you discussed reduced hours etc with your employer - are they even aware of your RA?
    Your 'just getting on with it' approach is admirable and has served you well, but it's possible that your body isn't any longer on the same page as your mind on this one!
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    My employer has known about my PsA and Psoriasis since they interviewed me 16yrs ago. Access to work have been into my place of work and suggested things which have been put in place. My Methotrexate is delivered to my place of work not my home. I have health issues whether I work or not. Some days are worse than others. My employer has to make reasonable adjustments. I cannot afford reduced hours and the role I do does not have reduced hours or part time positions and that is made very clear when you apply for the job. I don't rule out mind over matter as being stubborn about my health has stood me in good stead, Looking at the info and posts on this site it is apparent to me that all my medication options have not been explored. What has helped until now is not working as well as it use to and that needs to be looked at. Sitting at home in pain struggling financially is not an option when I can sit in work in pain and get paid a very good wage for doing so. The day they want to medically retire me I will go but I am very good at my job so they are quite accommodating and have been for the last 16 years. Knowing about DDA legislation also helps. I work for a large global company which prides its self on diversity; There are people where I work in wheelchairs, on crutches, and with MS who come to work every day. I will know when its time to throw the towel in and its not now. My heart goes out to people who cannot continue to work especially when its a job they love. I will always look for a solution to continue not a reason to give up.
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Three things come to mind.

    1. I have always maintained that, with arthritis, the more inflexible the joints, the more flexible the mind must be.

    2. Your 'retirement plan sounds to be extremely important to you. Again, I maintain that the more important the plan is, the more essential it is to have a back-up plan ie Plan B.

    3. I looked back at your first post where you say you've had OA for...what?....about ten years? You say your consultant has never suggested adding to the methotrexate. I'm wondering whether much of your difficu lty is now arising from OA not PsA. If so, there's no point in increasing the meth or adding to it as that wouldn't help the OA.

    In your situation I'd want to ask the rheumatologist about how active the disease (PsA) is. If it's under control then I'd be finding myself a good physio. It might feel like the last thing you want but, believe me, it will help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    What are your bloods showing? i know with PsA they are not conclusive proof of much (I've had appalling bloods and felt quite well apart from the pain and felt lousy with perfect bloods) but I wonder if OA is now playing a part? Mine was reasonably well-behaved over the summer but is grinding into action as the barometric pressure falls and the damp arrives.

    The meds for my PsA do nothing for the OA and frankly nothing for the PsA by relieving pain. I have learned through experience that my OA pain is a different kind to the PsA and my knees are the most badly affected as they have both kinds, I am bone-on-bone through both joints and have been for years. PsA is in my toes, fingers and elbows, the OA in both ankles, both hips, both wrists and one shoulder. I don't bother analysing stuff too much, it changes nothing and gets me nowhere.

    It's good that when you are fully absorbed/distracted you no longer feel the pain but that could end as things progress and the arthritis really gets a hold. Distraction is my main pain relief method, it's as effective as the various dullers and in conjunction with them I am able to get on pretty well despite the constant twanging.

    I learned aged eight that what I wanted from life, and what was physically possble, did not match and they never have. I have tailored my life to get the most I can from it and still do as I know my limits are reducing year-on-year. They would anyway with the natural process of ageing, I was allocated the accelerated path is all. :lol: I think everyone on here has had to make hard choices, difficult compromises and challenging decisions, that's part and parcel of the disease and one of many of life's rich travesties. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Annfield
    Annfield Member Posts: 28
    edited 30. Nov -1, 00:00
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    I have a rheumatology appointment every 6mths. I haven't had my blood results yet but I don't see them as relevant as I have been in pain and my bloods have been ok. I know the difference between my OA pain and PsA pain and although both are hurting the PsA is worse at the moment. I have it everywhere. I have had physio many times over the years and it hurts and tires me out. I am not sitting in a chair all day immobile. I move about a lot in my job. however I am looking forward to my hydrotherapy appointment. Methotrexate controls my Psoriasis too so needed to also be increased to control it better. My retirement plan is very important to me. I would think its important to everyone. I have seen the posts about people unfortunately having to give up work and now struggling financially. I have seen the posts about benefits and the hoops people have to jump through when they are quite clearly incapacitated. I have seen the posts about people being embarrassed because they need to go to a food bank. I am embarrassed the we need food banks in this country. I don't have to prove to anyone how difficult life can be with arthritis and certainly not a benefits agency to obtain a pittance to live on. I would encourage people to look for ways to stay in work for as long as they can. I would always suggest they look for ways to help keep them in employment. Who wants to be at home in pain and depressed and stressed and existing on very little income which makes the condition worse. One day I will wake up and know that today is the day I set in motion my exit from work and mean it. I use to have a friend who constantly told me I shouldn't be working because of my health and "why do you put yourself through it". She seemed to be an expert on benefits and what I could claim. She depressed me. I told her straight many times that I am the best judge of if I can work or not ( by the way she also constantly as me if there were any vacancies in my department :? ) In the end I just stopped bothering with her. I could no longer put up with her doom and gloom and her prognosis for my aging years. As I have said in previous posts I have had PsA for over 30 years. Its not new to me but there are meds that I haven't heard of or been offered which I need to enquire about. If someone cant work I would encourage and support them to get everything they are entitled to and all the help they need. If someone can work but needs help to stay in work I would support them and encourage them to get everything they are entitled to and all the help they need. I am in no position to make decisions for anyone. Only for myself.