REALISATION

nightswimmer

Hi

I was diagnosed with PA about 5 years ago and following a course of methotrexate tablets felt that my PA was under control, to a degree. However, I've had to stop the tablets as the level of dosage was affecting my stomach, so now I'm on injectable methotrexate. All of which I can cope with.

What is starting to dawn on me is that I seem to be getting worse and really struggling with every day things. I am 43 and always thought that arthritis was for old people who had swollen visible joints. I am just realising that although I don't suffer as much as others by some long way, the point I have gotten to has come round quite quickly and I'm finding it hard to cope with. Walking around hurts, standing up hurts very quickly, sitting down means I get stiff & painful quite quickly. I try to keep busy with work Monday to Friday but find that I struggle with the pain during the day along with a feeling of complete exhaustion. This exhaustion is with me all the time, some days are worse than others, but most days I just want to go to bed. I work on my garden but find that very quickly I have to stop. Even driving can be difficult as my shoulder is extremely painful nearly all of the time. Holding a phone to my ear is painful in my elbows & shoulders.

Its just dawning on me that I am really struggling to just get through one at a time. I don't want to feel like this as I feel very old and very lazy. I do speak to my partner, who is very supportive, but I feel guilty whenever I complain, which I try to keep to a minimum. I need someone to talk to who understands how it creeps up on you, one month you feel its all under control and not affecting you that badly, then the next month you realise that actually you are struggling to keep going.

I was on anti-depressants but I have stopped taking them as I didn't feel they were benefiting me and I think they were mis-diagnosed by my GP. I am a happy person normally, but find that the pain is wearing me down and my patience & tolerance of others is becoming thinner.

I just need to tell someone all the words that keep going round & round in my head, and share the frustration even though no one else can help, as they say a problem shared ....

Thank you for listening.

dreamdaisy

Hello, it's nice to see you over here! I now have to go and get ready for work but I promise I will be back later to have a natter and I look forward to seeing your name here and there. DD

earthspirit

im literally just going out the door and i feel so sorry for the state of mind that you have right now. it doesnt sound like the meds are doing what they are meant to and maybe you need to discuss with consultant about a change etc.

i know a few on here got PA so hopefully they can give you more help with your actual condition.

you need to learn to deal with the tiredness and maybe somehow reduce the hours you are working and rest more when you need it.

i feel a lot is down to how the public perceive arthritis in it being an old persons condition because that is actually so far from the truth.

keeping healthy by excercising as much as you are able and having a healthy balanced diet can all play a part in your condition being more tolerable and your mind dealing with the limitations of your body.

its really not all doom and gloom and there are just so many of us affected by so many forms of arthritis.

you seem to have reached this point of realization and it can make you feel down and depressed but you dont have to remain there. i wish i had longer to say far far more to you but you are going to get lots of positive replies on here. im 53 and have had moments of feeling really envious watching 80 year olds on walking holiday or lifting heavy stuff out of their cars etc etc. now i barely notice.

this forum is a great place for support so its good you are here and stay strong - its never as bad as it might seem.

earthspirit

oh no DD snap! i was thinking of you in the post i made because i know you are such a positive help to so many on here lol - there are more like you though so hopefully some appear soon as we are leaving the lady in need.

nightswimmer

Thank you for your quick replies. I would like to emphasize that I don't feel depressed or down, I just have realised that weight & seriousness of my condition. I totally understand about watching old people do more than me, with envy & embarassment.

I work full time and don't see how I can reduce my work hours. I would like to but finances dictate.

As I type this I am realising that my wrists are really struggling and I need to to stop, thats how rubbish I am at the moment! Will post more soon.

PS - not looking for sympathy, just listen to others experiences and how they moved through the process of thinking it was under control to suddenly realising that life has become much harder.

tjt6768

Hi, and a warm welcome from me too..
I totally understand the realisation bit.. Not easy..

I'm sorry that you're suffering so much. And that you've had to turn to injected meth, but I have heard that it's much easier to tolerate that way.
I'm on sulfasalazine at the minute but think the meth is heading my way.
I'm sero-negative with some osteo thrown in the mix.. Lol
I'm 44 just gone and I know what you mean about feeling much older.
I hope you find yourself at home here, I know I have.. It's a wonderful site full of lovely arthrites of all different flavours

Be well

stickywicket

Hello nightswimmer. Welcome from me, too. What you write about sounds like a pretty classic description of an auto-immune version of arthritis. I’ve had RA for over 50 years and it rings many bells.

However, it is possible that yours is not currently quite as well-controlled as it might be. Maybe your meds need upping, or changing or something else added to the mix. I take meth too (tablets) but I also take hydroxychloroquine. Others take sulphasalazine or some combination. Would it be worth ringing your rheumatology helpline for advice? You come over as someone who doesn’t like giving in to arthritis and that might be why you find it creeps up on you and you actually feel worse than you’d realized. (That’s my default position, too.)

The work situation is difficult. You might pick up some tips by looking at out ‘Working Matters’ forum or contacting the Helplines – on their forum, by phone, email or PM.

It’s good that your partner is supportive. It’s a fine balance, trying not to overburden them with our aches and pains while keeping them informed and not shutting them out.

I’m glad you posted here. As you say, just getting stuff out of one’s head and onto a computer can help, even if we can’t be any practical use. Ah, but I may be able to help in one, small area. I always hold the phone in my right hand but to my left ear – there’s less bending and twisting involved. Well, to be honest, after 5 minutes I put it on speaker anyway :roll: but the former does help for short calls.

Take care.

dreamdaisy

Hello again, my day's work is done (I am fortunate in that I work at home so I can sort my timetable to suit me) but I have been thinking about you and your post and some ideas have sprung to mind (it's the only kind of springing I can do now!)

Arthritis of any sort is a progressive and degenerative disease but the speed of progression and degeneration varies from person to person. Generally the earlier the meds are begun (for an auto-immune type) the better the chance of slowing that progression and that seems to have been the case with you with the meth. Alack and alas there are not many who find that meth alone is enough to control matters for any length of time and meds reviews are necessary every now and again to decide whether other things need to be added to the mix. Has this happened to you or is likely to happen? What are your blood test results showing? They are often a useful indicator of things being 'not quite right'.

I still think your tiredness is due to the arthritis being gently active. I spend most of my days in (at the very least) a light mist of tiredness but at its worst I'm in an absolute pea-souper. Quality sleep is rare, sleep is never refreshing and I often begin a day more tired than when I went to bed, but for me this is arthritis and this is what it does. It not only disturbs our joints, it disturbs our emotions, our habits, our relationships and our quality of life. I sleep with a pillow lengthways between my legs as that helps to cushion my sore joints. I admire you for still working full-time but I am not surprised that you are feeling so generally shattered. Not for one moment are you being idle or lazy - you're a poorly person and poorly people need their rest.

Over the years I have learned to pace myself with chores etc. Gardening has gone out of the window (I never liked it anyway ), I start preparing the evening meal at around 5pm as I do a bit then rest a bit, do a bit then rest a bit, and if it takes me all day to change the bed , well, so be it. At least the damned thing is changed. I always stop when I think I can do more and that seems to work for me.

Over the years the joint damage from my PsA kin my toes, ankles knees and sacro-iliac joints has led to OA in both knees and both ankles so my mobility is now somewhat compromised. I have been on crutches since 2002 and have recently graduated to a four-wheeled rollator - and that has been a boon. I spent two hours in town on Sunday (with 'im indoors) simply because I was able to sit and rest whilst he did what he wanted. I can queue again! Oh the joy of not having to put summat back in M&S (for example) because the queue to pay was too long. I have had to cut down on driving due to the lower limb trouble and also having trouble with my hands - I was recently checked out for carpal tunnel and I'll find out if that is the trouble later this month. I have some splints to wear and I have discovered that driving in those ain't too easy.

Being in constant pain is draining, frustrating, and demoralising. I am currently on anti-depressants to help with that: I plunged into a black hole when I discovered the extent of the OA damage in my knees (and on being told I have to wait until I am 55 for new ones) so was given Citalopram by my GP. I wanted to stop taking them but my rheumatologist said no, and that to me makes sense. Being stronger mentally helps me to cope with being weaker physically.

Meds-wise I have a little list. I inject meth weekly (15mgs) and humira (an anti TNF treatment) fortnightly. I also take folic acid three days a week. The humira led to raised BP so I am on meds for that, plus six sulphasalzine tablets daily (to help the psoriasis), one daily diclofenac (an anti-inflammatory) and daily omeprazole (a stomach protector). My PsA is well-controlled and I guess that's good enough. You do discover your own coping strategies the longer this malarkey goes on and the forum is wonderful source of information, support and encouragement from 'those in the know'. Many people do not understand the impact this disease can have but we do. There is a wonderful thread called 'Acceptance' (I think it was started by Collywobble) I will dig it out and 'bounce' it to the first page of this forum, it makes for interesting reading.

Right, I've bored on enough for now, I am glad you have found us and I hope we can help. DD

nightswimmer

OMG dreamdaisy, I don't suffer anywhere near your level of PsA. What does now cross my mind is that as you say, its a degenerative disease, will my issues move towards your level of suffering? I know everyones different, but this is now my concern.

I have now thought of how I was 5 years ago and where I am now, and the progress seems to have been quite fast, where will I be in 5 years time? Currently I am only on 10mg injections once a week, I didn't have any idea that the dosages could rise so much more. I wasn't aware that there are other drugs that can be put into the mix either. I have learned so much already, so thank you so much for sharing!

I do use a pillow between my legs to help with sleeping as well, I now have a ritual at bedtime to get myself into the best possible position. I'm buggered though if I can't find that "perfect position" and end up awake most of the night until I am so tired that my body/brain just gives up and eventually switches off.

I am worried for the future as well re working. I have worked all my life and don't know what else I would do if I didn't come to work everyday, I can't see a life after work. Did you use to work before PsA? I don't know how to tell people that I am suffering from exhaustion or from pain. I have always been quite a strong able bodied person and struggling to do anything is coming as quite difficult to come to terms with. I got to learn to slow down I suppose, but it doesn't come naturally!

Thank you so much for sharing, it puts my situation into context as I don't suffer like you, I agree that that the fatigue & pain are indeed demoralising & draining but when I hear about your suffering I see my own issues in a totally different light. I'll keep a look out for the "Acceptance" thread.

bubbadog

Welcome nightswimmer, I totally understand where you are now, I was once in your shoes. It is a big shock realising your life is gonna change all down to arther! It takes time to adjust your life so just go with the flow.
As for the meds it may be time to go and see your doctor to review your meds. Welcome again night!

stickywicket

Hello again, nightswimmer. Where will you be in 5 years’ time? Who knows? Your arthritis could become worse or, with good medication, better. Yours seems to have been caught early so, hopefully, if you can keep on top of it, you will not have the problems that both DD and I have had simply because DD’s wasn’t diagnosed early enough and, though mine was, there were no DMARDS about at the time to control it. Your situation is entirely different.

As for how to tell others of your exhaustion and pain – try googling ‘The Spoon Theory’. Many on here have found it a great tool.

Treat your arthritis with respect. Don’t let it get the upper hand. Deal with any problems as they arise. Defy it occasionally by doing stuff you really enjoy even if it does kick back later. And try to live in the present instead of worrying about the future. My family were always trying to make me ‘save myself’ for some unspecified future. I didn’t and don’t regret it for one moment. I’ve had a good life.

nightswimmer

You guys are amazing, thank you for your messages. Please believe me that it is gratefully received, and I will try your suggestions and definitely stop thinking about what might happen and stay focused on the here & now.

Its truly great to have been able to have shared my experience and listen to those who have & are still going through it. Very positive!

dreamdaisy

Blimey - I didn't mean it to sound that bad! I meant to be factual, not dramatic. Yes, I am affected by both sorts and the joint damage is foul but every one is different in how things progress. Not having meds for five years didnt' help (no-one took my fat left knee seriously and I didn't know enough to be pushy) and then having ineffective meds for two years after that didn't do much to control things. I am sure that that seven year period was when the damage was done but it's done and cannot be undone. Spilt milk, water, bridge - I'm sure you catch my drift.

Everyone's arthritis is different in how it presents, how it develops and how one is affected. It is a progressive, degenerative disease but the sooner one gets the meds the better as they slow that progress and degeneration. You probably haven't been told much about the other options as the meth has proved to be sufficient until now and that is a very good thing. Sticky has taught me a great deal about living with arthritis but the most important thing is that I boss it - it doesn'tboss me. It's a factor in my life and I have had to make adjustments to cope but so what? There's no way I am going to cave in to its more outrageous demands.

None of us know how we are going to be in five years' time. I'm taking it for granted that I will still be alive tomorrow but I don't know that for a fact - Mr DD is close to finishing me off thanks to my snoring! None of us know nightswimmer, so live for the day, tomorrow can take care of itself. Carpe diem. (Seize the day.) DD