I had a rheumy appointment today. I'm on methotrexate and Benepali but I still have pain in all my joints ( I have PSA). She looked at my feet and elbows and said that my pain is now due to 'wear and tear' and ligament damage- ligament damage around every joint. I asked if I could try a change of meds and she said that it wouldn't make any difference. The Benepali is stopping new inflammation but won't stop the stiffness in the morning / at night . she said it was because I'd had the disease undiagnosed so long. I also have to pace more- not go so crazy when I have a good hour ( I can't pace . I'm one of those with ants in my pants:-)) She laughed when I asked about going back to work- I'm on benefits -& said she wouldn't suggest ever going back to work teaching and to forget about going back to work at all.
I have bought biscuits, ice-cream (vegan!) and childish fizzy sweets. Food may not be the answer, but stuffing my face seems an enjoyable option tonight. I'm 41and washed up. I know others have it a lot worse but tonight I can't feel anything but fed-up ness. I'm going to wallow in self pity and sweet snacks xx
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LizzieR
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I'm sorry to read your post and you are most definitely not washed up. Enjoy the poor me evening then tomorrow look for a new hobby, make a new friend or just look for a different very part time job. Something will turn up ! Sending good vibes and thinking I love fizzy cola bottles.
Sorry to hear your having a rough time you definitely not washed up! Enjoy the sweeties they do help even if just short term. Had bad day at weekend and sat and ate tub of ice cream made me feel tons better at the time lol reading about the sweets makes me want a bag of Haribos lol
Sorry to hear this Lizzie. I don't blame you for indulging yourself, flying saucers & cherry lips for me please if you don't mind! If your Rheumy's of the opinion your pain is due to wear & tear my experience is that they refer you back to your GP to medicate & maintain it. I was having terrible pain & had convinced myself it was RD having a real good chew, didn't give it a second's thought it was my OA galloping on a pace but it was. It wasn't a quick fix because I needed many pain med reviews when titring up but it was a start & apart from the odd niggle it's now sorted. So it might be an idea to make an appointment with your GP, see if he/she could do similar. I was also given specific exercises to do, it's important to keep moving otherwise we seize up!
Hey you are entitled to feelvsorry for yourself tonight .the others are right you.ll feel better in the morning .you are young and stronger than you may realise.ice cream and sweeties for me too . Seriously love keep calm .talk to your rhuemy doctor .there is something you can do thats not too strenuous. If not chill .you deserve it .gentle hugs x
I don't blame you at all for having a pity party. We all need to indulge from time to time and you have very good reason. Tomorrow is another day to tackle the world. Oooh mine's wine gums please. Big hugs
Mines milk bottles please!!! And the biscuits and ice cream!!! ☺
Sorry to hear of your experience with your rheumy. Recently had some quite thoughtless and hurtfull comments from friends, so yes a duvet afternoon, snacks and a movie helped!!! Then got me head over it and now focusing on what I can do - not on what others say I can't!!!
Hope the morning brought you fresh ideas for a more positive way forward for you 👍
No you aren't washed up Lizzie.....like all of us on this site you have been dealt the lousy RA card......& it's awful & it's not fair.....so eat all those goodies & then get back to thinking about the next 41 years!
If your rheumy says different RA drugs won't help, maybe you could get referred to a pain clinic! If your pain was better controlled you could possibly get some exercises from a physio to make things easier ......maybe that doesn't make sense, but with this disease you you have to go down many paths & think outside the box to get relief.
As you are a teacher, would it be possible for you to do some tutoring at home? I don't know how that works.....but something like that should allow you to set your own hours.......but of course if you do start earning your Benefits would be affected.
I hope that today is starting better for you. It takes courage to pick yourself up and face the day after depressing news like that. If you go and talk to your GP about this, do ask to be referred to physio as properly designed exercises to strengthen muscles supporting the ligaments can help. Also consider asking about CBT (cognitive behaviour therapy) as for many it can really help deal with chronic pain. Good luck.
Dont let anyone tell you that you are washed up, none of us are, we might have to change direction but are still important. You will find something you enjoy which isnt too detrimental to your health! Enjoy your wallow but tomorrow is another day!!!
I just had to reply to this post. I have PsA too and I'd been telling myself that the pain in my feet was due to inflammation. The 'good' thing about inflammation being that it can dampen down. Then a month ago I had ultrasounds of my feet and hands. The technician told me that 'every joint' in my feet showed arthritic or degenerative changes. I haven't seen the report yet and in a way I'm in no hurry to do so. But that was One Bad Day!
PsA put paid to my teaching career in my 50s. But we teachers are nothing if not resourceful, the job requires so many varied skills. At 41 you will be able to find something else that does not require being on your feet all day or which you can do from home. But at a juncture like this there's going to be at least an element of grieving. 'Washed-up' is one way of looking at it but I doubt very much that that feeling will last. Things are going to be different, but different is okay, it might just be a whole lot better than okay.
I don't know whether PsA damages joints and tendons even more insidiously than RA but I think it's a possibility. I hear you when you say that your damage is more extensive than feet, I suspect the same is true for me but I've had relatively little imaging done. Strangely, after hurting almost constantly for months, my feet have eased up considerably in the last few weeks. I think helixhelix's suggestion about physio is a good one. A friend of mine who has catastrophic foot damage due to PsA tells me that strengthening tendons and muscles may ameliorate the pain and also recommends supportive shoes, i.e. probably even less attractive ones than most of us are forced to wear already. If you can walk any distance (wearing the right kind of shoes) then that will help I think. I've managed to keep walking, walking, walking so far and also find that Tai Chi helps, it really does.
After reading your post I've now resolved to get hold of that ultrasound report. I'll get the ice cream ready.
hi! I had a diagnoses of PsA for twenty years and have had 7 total replacement joints. Never have I been told that there's nothing Rheumatology can do. Biologics and anti TNF can be effective treatments and are available if other first line treatments, including Methotrexate and DMRDS haven't worked. PsA can be very damaging and you shouldn't have been written off! Ask to be referred to a different consultant rheumatologist would be my advice. My condition has now been re diagnosed as RA after twenty years... Reason is that there is a new blood test which is a more definitive tool than the simpler RF test. It's called CCP (not to be confused with CRP) and identifies a peptide only found in RA. Worth following up? Best wishes and don't lose heart... Fight!
Thing is Dorcas, the DMARDs and biologics can't do anything to help joints that are irreversibly damaged. What they do do is to prevent damage happening.
you're right of course postie2. I've had experience of quite severe joint damage resulting in seven total joint replacements. However I'm quite convinced , as is my consultant, that without the biologics etc I'd be a lot worse off. These drugs are not foolproof and the body starts to create antibodies that eventually stop the individual biologic working, hence inflammation and damage occurring and the necessity of trying another anti tnf. That's only my experience but I'm very grateful for the continued treatment and access to drugs that I get via my great Rheumatology team in Glasgow.
Hi Lizzie - Enjoy your sweets wallow - we all get there some time. While not the answer all of the time, it is great to indulge now and then. Hope you are feeling better soon sweetie
I agree with one person here who said don't let anyone tell you you're washed up! Perhaps consider a different rheumy--or a ND or even an MD who is in integrated medicine. For pain many try acupuncture--( like anything some are more skilled so try at least 2-3 before giving up) Some try cannibus--it may be legal in your state, some go on roadback.org and join the discussion group ( there is research that shows minocin is a strong DMARD and many RA people are using that for pain, stiffness and swelling). Has your RA doc referred you to physical therapy? If not tell her you want a referral for your certain joints for strengthening and conditioning--you are young! Dont take that advice--of course you can go back to teaching! If that is your wish! You know your body best! Get better support for YOUR goals!
I'm in the UK and it's not legal here yet. Thank you for your encouraging words. I've had enough sugar to be able to fight again and am going to ask for physio etc x
Incidentally, I didn't mean to minimise the effects of all the changes you're facing. I do realise that not being able to pursue your career is massive. It sounds as if you've already had to stop teaching but had hoped to return so I guess you've been wondering how things will pan out for some time(?). Presumably you will be up & down for a while to come so do seek support as and when necessary. Might be best to acknowledge that the fight back is an ongoing process and allow for more ice cream moments at the very least! You do sound as if you're one of those who will live well (and carry on earning) despite the obstacles.
I didn't read it as if you were minimizing it at all! I haven't taught for about a year now. I was just sure there would be a other meds to try. But I am stupidly lucky in my life so will be fine. Thank you x
You are not washed up,please know that,as for work as a teacher have look to see if you can teach for s couple of hours a day,week at students home or yours. Doctors often don't live in our world,some are really brilliant others should never be allowed near patients. Today you may wallow in self pity cause you got all those naughty goodies to eat. Tomorrow however is another day, ask for a second opinion also find a help group near you ,see if they have or need children who need some extra teaching , maybe swap your skills in exchange for whatever you need. Remember you are a brilliant person. Warmest Craig
Please take a step back this isn't the end even though it feels like it at the moment the technology they have now is a lot better than when I was first diagnosed forty years ago I was told that I'd be in a wheelchair in five years but I'm still walking so there's always hope just don't give up , we're here to moan at even shout at some how but we've all been in similar if not the same I know you'll say it's easy for you but just keep going for yourself if no one else 💕🌹
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you definitely not washed up! Enjoy the sweeties they do help even if just short term. Had bad day at weekend and sat and ate tub of ice cream made me feel tons better at the time lol reading about the sweets makes me want a bag of Haribos lol 
Update Crown & post fell out, advice
Started Benepali
Fibro diagnosis - and a prescription to do karate!
