Visit to the occupational therapist today

Just thought I'd mention my visit to OT today. I was referred there by my rheumy nurse when I asked about my wonky right ring finger...early swan neck deformity. I assume this is due to the long wait I had to be diagnosed and start medication. Anyway she fitted me with an oval8 ring splint made out of a flesh coloured plastic. This is designed to be worn all the time but I'm not sure how I feel about that. I definately won't be wearing it to social occasions even though it is quite discreet. I know I have ra and need to protect my joints but I do find it hard to wear something which makes it so obvious. Of course I'm also aware that if I don't my wonky swan neck finger will eventually speak for itself! I was also fitted with resting splints and have to return in 2 weeks to be fitted for night time resting splints, the hard plastic kind. The highlight of the appointment was the fire alarm going off and all having to evacuate the hospital. I was hoping for the arrival of hunky firemen but sadly none came :-(

Things are ok at the moment. I saw the rheumy nurse for my first post diagnosis check up 2 weeks ago and told her things are getting a little more stiff, probably because the steroid jab has worn off. She's going to see me again in 6wks and said she may increase my mtx. I'll have to do a little reading before this appointment as I would of thought the next step would be to introduce an additional Dmard? I do look in on you all regularly but only type occasionally as my ra affects my fingertips making regular typing difficult..not the best thing for an out of work administrator! Still working on my fitness and remaining positive. I do think the mtx is working as I'm in far less pain than before I started it. In fact I would now say I feel discomfort rather than pain. I don't seem to need any anti inflammatories or additional pain relief so long may it continue. I hope you are all keeping well and pray that we get a little bit of summer sun soon. I'd really love to go camping but no way am I trying it in this miserable rain. Best wishes to all

Paula x

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  • I used to wear those oval8 ring splints. My swan neck finger is not as bad as it was, so I don't know if the splinting helped or was it the meds?

    I also had a splint for my Z thumb, but it broke. So my thumb is my worry these days.

    Also I have always done lots of finger-muscle exercises with putty or stress balls.

    I used to think I might get some beads to enhance the plastic on the ring splints, or get a jeweller to make a pretty version!

    I expect if you wear the splints most of the time, that will be fine. And you will find the night splint will sort of train your muscles to be where they should be!

    Good luck.

  • Hi Phoebe, I've not looked at Z thumbs as I find the ra pictures a bit depressing. Hopefully I'll be like you and see an improvement soon. The OT did say it was good that I had been referred to her early on as I could protect my joints more. I wish she could tell that to my Jack Russell whose sole aim in life is to pull my hand off my wrist during walks! I wish I could just lash a leash around my thigh to walk him but people would just think I was mad. I've not been given any exercises. Did you find these yourself or get them from physio?

  • I got a list of exercises from my Physio. I think OTs do them too.I wonder if they exist online. I will have a look.

    I have given up lead walking my dogs, I drive to the local common and let them run loose these days. I walk slowly and they zig-zag around me and wear themselves out. (One of mine is a mad Jack Russell cross.)

    Have you thought about getting one of those hands free waist belt leads that I have seen joggers use? Just a thought!

  • Ooh I like the sound of that although I may find myself being split in two as I have a labrador as well. She has been known to pull me right off my feet and drag me along on my belly! I may follow your lead and start driving to the local park for walks. I just get a bit nervous because last time I did this I got stalked by a pervert..at least I assume he was a pervert as he was following me and hiding in the trees. That's the other thing about the ra, it makes me feel more vulnerable as I don't have the strength to defend myself. Self defence for ra sufferers would be good :-)

  • Perhaps there's a new business in there somewhere, making nice covers for splints and crutches to tune them into fashion accessories?

    How much MTX are you on? I went up in stages to 20mg before the rheumy suggested adding on other DMARDS. Px

  • I've seen silver ring splints but they're still not very pretty. Needs must I suppose. I'm currently on 15mg of mtx and have been on this dose for 6wks so it's early days yet. Were you better with extra DMARDS added in? I'm not sure what expectation should be really. My ESR has been falling but I still have tender/swollen joints.

    Paula x

  • I keep asking about expectations too, even after a few years, as I'm still hoping to improve more. For me it's important to keep on hoping. It took several months to get full benefit of the MTX and then I was fine for a while. The pattern for me is that after a while I start to go backwards, and rheumy adds in something else/increases doses and It gets better again for a bit, and so it goes on. But everyone's different....Px

  • Glad to hear that things are going in such a positive direction for you on the whole & that your finger's been sorted out. I do agree though that someone's got to improve on the flesh-coloured plastic version but at least it's a small thing (I assume!)

    The discussion about MTX & other DMARDS makes me realise that I need to know more - it's early days for me but taking such strong stuff while knowing so little goes against the grain. I'm seeing the Rheumatology nurse tomorrow so will take a list of questions.

    I seem to have got the impression from somewhere that you were seronegative for Rheumatoid Factor? (I may be confusing you with someone else.) I'm interested because my diagnosis of Psoriatic Arthritis is yet to be confirmed & there are still some things that make me think I have RA despite being sero-negative.

    Like you I don't have much pain as such & that in itself really makes me rejoice on a daily basis.

    48 Ibs ?!! Respect!

    Christina x

  • I'm seroneg RA, and so's Tilda I think. but RA or PA isn't that important to start with as both hurt and treatment starts off the same. Which particular delight you have will come clear eventually. Px

  • Thanks for that. I'm just wondering how they eventually plump for RA if you are seronegative?? I'm assuming it must come down to diagnosis purely by symptoms?

    I kind of do need to know what I've got. For example they divide PA into 5 different kinds & if you clearly slot into one then there are implications for the prognosis. Just knowing that I had inflammatory arthritis helped loads & now I'm just plodding on with the process of understanding more.

    Christina x

  • Hi Christina, it is nice not to be in much pain especially after being in constant pain for about 8 months before diagnosis. I'm afraid I'm seropositive so you must be thinking of someone else. It's a good idea to swot up and take questions with you, that's how I got referred to OT. Next time I'm gonna push for some physio too! What meds are you on at the moment? Is the 48lbs referring to my weightloss? If so it's 61 now :-)

    Paula x

  • Thanks for replying to my question, I might look at the profiles of others whose names I recognise & see if I can find who I was thinking of.

    Sorry for underestimating your weight loss! That is some will power.

    I'm on oral steroids - Prednisolone, I had steroid injections in my knees two weeks ago & started MTX last Sunday - 7.5mg which should rise to 15mg in 3 weeks.

    But the pain situation had improved before the medication. Basically, since the flare I haven't had hideous pain that just sits there regardless of what I'm doing - it's just some movements that hurt. I've been trying to improve my general health and especially my stress levels. I worked pretty much full-time as a supply teacher (I was lucky, but ...) up until last February & had been ill in one way and another for perhaps a year or more without knowing what was wrong or taking time off. Then from March onwards I remember describing what was happening as being as if my body was having a nervous breakdown.

    My knees are badly affected though & it almost worries me that I've got so used to it, if you know what I mean. It is hard to imagine ever kneeling down again now & I think I should at least hold out hope for full range of movement.

    It does strike me that there is a mental battle to be fought in getting better as well as the physical one. I've heard other people say that before but it's only now that I understand it.

    I'm rambling on a bit, sorry! All the best, Christina x

  • Christina I know exactly what you're saying about your body having a sort of nervous breakdown. Before my arthritis became obvious I was ill for about a year too. I felt ill and run down, picking up infection after infection and suffering constant cold sores. It just proves this disease affects more than just the joints. I'm feeling much better now but I think that has a lot to do with not working as I was working in the jobcentre where it was very stressful. I agree that the mental battle is an important one to conquer. Having the support of each other on here certainly helps with that one x

  • Hey I'm impressed too as I've only lost about 50 so you're 11 up on me and I'm sure I started before you! Mind you I've been a bit lack lustre for the past week or two re doing my proper exercises on my Wii although I've been walking a lot. But feeling sick has done for my willpower on that front although I had lost about 6lbs when I last checked - in the space of a week! I'd rather have my appetite back than be all grey and sickly though.

    Well done Paula I think you're a star to keep it all going. The steroid will be wearing off now but hopefully the MTX is kicking in and will do so increasingly. Keep pushing them to do right by you re upping the dosages and adding in a new DMARD. Things in rheumatology are so slow unless you are on their case regularly it seems.

    I'm sure I've seen those anti swan neck rings made by a jeweler somewhere? - maybe the NRAS magazine? I will check it out and let you know where I saw them. Making a feature of them might be a better option than flesh coloured which really do look a bit weird for going out in I agree. Fortunately I haven't got any swan neck deformities despite having a lot of problems with my hands last year.

    I do have ugly OA nodes on the tops joints of each of my fingers which arrived with the RA. They are like bony swellings on my joints and I dislike them intensely but I've sort of got used to them now and won't let them addle me as they don't hurt apart from when they were forming. I read a blog by a woman who hated them so much that she gnawed at them with her teeth and then they got really infected and that shocked me into just accepting them more.

    I think physio is a great thing and it has really helped my hands hugely to keep exercising them - I can now clench my hands almost completely and can grip again and have no problem with taps, door handles or dog leads now mostly. If I have something consistantly hurting a lot, like my ankle tendon was, I email her and she sees me for a few sessions and gives me exercises to do that are specific to where I'm hurting.

    My wrists have the odd achy day or night where I get my night resting splint out again but it's not like I'm being tortured with burning rods and wrists and fingers playing at fractured any more - haven't had that since February the 4th - so that's how lodged in my brain the last wrist flare still is! I'm feeling so nauseous again now, having just taken my weekly dose of 17.5mg that I'm having to remind myself of why I'm taking this drug again, Remembering that excruciating, sickening acid pain does the job brilliantly - rock on MTX I love you really! TTx

  • I hope the anti sickness drug does the job for you Tilda, I'm sure you know all the tricks like eating little and often. I've been extremely lucky to have been nausea free up till now but I really feel for you as sickness is the worst feeling. I just don't get why your doctor is reluctant to give you injectable mtx when this seems well tolerated by people in your position. I remember you sent me a link to hand exercises when you said how much they helped you so I must stop being so lazy and do some too. I've been pretty neglectful on that front. I suppose I've just taken my mtx and tried to ignore my disease, concentrating on diet and swimming instead. Time for a better balance I think. My Mum has large OA nodules on her fingers too, try not to worry too much as I never even noticed them until I got ra and a little finger obsessed. If we keep smiling people will notice our gorgeous faces and sparkling personalities more. If that fails just stick out your chest lol x

  • Hi

    A couple of people in this thread have mentioned the Silver Ring splints and I thought if you are interested in finding out more then I would send you the link to the NRAS website information nras.org.uk/healthcare_prof... . As you will see some users have been very creative and added jewls to them and I know that when I first heard about them from Christina (the author of this piece on this website) she told several stories about how several of the young friends of patients who had been supplied with this type of ring splint had been very interested to fnd out where she had got them and wanted some themselves!

    Being a keen dog lover I also wondered if you had heard of the type of lead that has inbuilt shock absorbers which help to reduce th impact on your joints if they suddenly decide to try to take off after something. There seem to be loads of different types on the web.

    Best wishes

    Lorraine

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