Anyone for splints?

Hi All, Just had the OT over and she was really trying to find ways of helping me with my hands and wrists. Encouraged me to apply for DLA although I'm reluctant at the thought of all those forms and don't really consider RA to be disabling me sufficiently yet, but she pointed out that not being able to turn key in car ignition sometimes or squeeze toothpaste or shampoo makes this a disability already?

Oh well I suppose even something small would help towards the cost of diesel for the car to take me to the hospital for physio twice a week - as well as the slowlng down of production of our artwork because I'm no longer able to work on the more arduous jobs. My hubby pointed out to her that his hands are now full of puncture holes and wounds and swellings from taking over from me so he'll probably need time off his care work job if this state of affairs carries on!! But seriously this was quite a shock to me - thinking of this as disabling because so many here have it so much worse and are in the workplace too?

Sorry I deviate - my question that she wanted me to put to any of you who use splints as support was can you recommend knuckle and finger friendly brands of splints? She has taken away my existing ones from physio to customise herself but the person whose job this has always been has taken on new jobs and it will be her first time doing this herself - but she has a sewing machine and wants to try for me at least. We experimented and tried tayloring them to see how we can avoid my swollen and painful knuckles best and I said I would ask around on her for recommendations as I've seen for footwear.

Splints are not only useful for support but also for special occasions when we want to deter people from shaking our hand - which is a very common form of greeting in Scotland where kissing is less usual as a form of greeting friends!

Also I have to go away for work later in the year so want splints that look smart - preferably coloured or black because the flesh coloured ones I've got are prone to discolouring and I have to wash them all the time plus they do rub on my knuckles where they end. Also I find all the little velcro straps really hard to prize apart when my fingers are sore so one connection would be better for me. Any suggestions would be welcome?! Sorry this is more like a blog than a question really but the question is the important bit so please ignore the preamble if you're sick to death of my waffles!

[Gina_K]

One of the reasons I am thinking of staying out of work for a while is the fact that my right wrist is so bad, cant imagine how terrible it must be for an artist, I am only in administration. Years of mouse use has taken its toll, my poor ole wrist is totally banjaxed.

I cant face another surgery this year, and I cant imagine, going back to total exhaustion from work anyway. My knee and other ankle are showing signs of not wanting to work as well I Am meeting my GP tomorrow for big chat on this issue

because she has to certify me. I think we have a different system in Ireland its called illness benefit, you get that for 2 years and then you can apply for invalidity pension, and then at 65 you get state old age pension which all is about €188.00 per week, which is Ok, I am sure its not simple to get but I am going to try anyway.

I hav'nt got splints, are they the same as supports, like neoprane? I have supports for wrists, maybe you call them splints in U.K. and they are the same thing? I presume the talk of DLA is the same as our illness benefit is it? What does DLA stand for? disabilty something?We changed from calling it 'disability benefit' to the term 'illness benefit' some years ago in Ireland. The dole is now called 'jobseekers allowance' too, instead of 'unemployment benefit'.

Gina.

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Hi Gina - thanks for your response. Yes I do mean wrist supports really - I'm looking for easy fastening ones that my weak and sore fingers can manage but ones that don't rest on my knuckles? I will look online tonight but as with footwear I don't want to throw away good money at something that may be 2nd rate so thought I'd trawl about amongst you lot for recommendations of types and brands etc.

I don't know about DLA, except that it stands for disability living allowance but I won't be going for it yet because I feel uncomfortable about using it unless things worsen considerably for me. I can walk about and do most things it's just that this RA takes up so much time and energy and you never know what's round the corner from one day to the next. Actually mine has become quite predictable over the past few months because apart from some mild stiffness and ache in feet and knees and shoulders sometimes it really is just in my wrists and hands so that's all I have to worry about unless a day comes where I wake and it's back somewhere else as it did for the first 9 months or so. I guess that's always the fear we live with day to day - that it will come back somewhere when we are least expecting it?

Very tired just now and heard today that my liver tests were still too raised to be allowed to up the MTX - so I'm back down to 10mgs again after a brief flirt with 15mgs. GP said that other patients can't get up from 7.5 for this reason and another friend said that her rheumy finally introduced new DMARDs for exactly this reason. Silly me I didn't realise this was how it worked - I just thought because I have no side effects it would be fine but seems not so. It wasn't my alt it was all of the liver tests that were raised but not much and it has come down a little from the last test so she says if I stick at 10mgs it might settle down back to where it was when I started 8 weeks ago - otherwise they'll lower it to 7.5 again. Ah well that's life so 4 mtx tabs here i come now!

Take care - Tilda x

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Hello Tilda - Well it sounds like a good visit - I have got a smart black thumb splint and a brown coloured wrist splint but they were not made for me specifically, just the usual run of the mill ones. Thumb one gives great support.

My OT give me a roll of brown material with velcro to wrap round pencils pens etc to give my fingers some support but i haven't have anything custom made. Not much help i am afraid.

Think carefully about the DLA - i am considering it as well. You may be ok this week but as you know things change daily. Fill out the form and let them decide whether or not you should have it. They certainly won't give it to you if you don't need it.

My OT was pressing me as well about the dla the last time i saw her and i said i would give it some thought - it was the first time i realised that as a working person i would be eligible for it but i always seem to compare myself with the people i work with who are so much worse off and that makes me back away from it a bit. But the longer i don't get sorted the more i am thinking i might fill the form in. Would help with the cleaner i had to employ to help out with the domestic chores.

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I think you should go for it Mads because your RA is much worse than mine I know and as you say you have to pay for a cleaner for starters.

None of us here asked for RA and I've paid NI contributions ever since leaving college back in 1988 so I wouldn't feel guilty to the tax payer - just that there are so many others who need it more and don't get it I would feel like I was taking something from a really important pot that I shouldn't take until/ if I need it more. Do you have the name of the thumb one (has it got a label on it somewhere?) and does it rest on your knuckles? Sorry to quiz but it's really becoming important to me to get some that are better suited to my needs. Tx

[Judi]

Hi Tilda,

I have the pink splints as supplied by NHS.

Have had to use my teeth to open the velcro at times. What I have done is run the strap pieces of velcro across something wooly so that the strap itself gets 'fluffed up' a bit which makes them less clingy.

Can you cut some off where the splints cut into your knuckles? I did this with 1 pair.

Also, if your knuckles are very sore and fingers drifting to one side, would you consider replacement knuckles? The only reason I ask is because I had them done on my right hand nearly 10 years ago and it was the best thing I ever did. Once they had settled after the op there has been only the rare twinge, and I do mean rare. My fingers had drifted and I was having a job holding anything, I was also working at the time as a secretary and was finding it very difficult to type. (Sometimes it's difficult to get put forward for op's but as soon as I said that I was having a problem cleaning myself when I went to the bathroom (not a nice subject) .......... my rheumatologist put me forward for the replacements.

I think stressing personnal problems gets more sympathy!

Judi

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Hi Tilda,

physioroom.com

I bought my wrist splints from here - the photos give a clear view of how far up the hand the splint extends.

I've customised some splints for evening wear with a black lace covering (think 1980's lace gloves a la Madonna) - I've found that for everyday use the royal blue splints show less wear and tear and grubbiness!

Cece x

[samcat]

Hi Tilda,

I got my wrist splints from Amazon - they are bright blue and called NEO-G. Made of soft neoprene and have plastic support inside that you can take in and out. The straps are abit tricky to navigate but teeth come in handy, as does the door handle! Not sure if they would be any good to you with your fingers, but I find they really help when shopping, gardening etc.

As for the DLA, do you have Citizens Advice in Scotland? They are fantastic at legal stuff, debt, benefits, you name it! Think their website is advice-guide.co.uk. Go for the DLA if it's been recommended.

Hugs

Samcat XX

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Thanks to both of you. I am now the proud owner of a single neoprane support for my right wrist - the worst affected re knuckles. I went to the hospital for my physio treatment and my local physio spotted me and went running off and came back with this one - she put it on me with the technician watching and explained to her that she had been thinking about my swollen knuckles for weeks and then remembered that she had one of these as an experiment in the stockroom. It works brilliantly although the single piece of velcro is quite assertive and so far others have put it on and removed it for me including sons and hubby who all think it looks quite stylish! I will take a photo and put it on my next blog maybe - the brand is Sammons Preston Rolyan? Another that someone with RA has recommended is called + Procool by a company called Jura Medical which also avoids knuckles.

I don't think I'm ready for knuckle replacements yet Judi - I'm still new to RA and my fingers haven't yet drifted so I'm hoping that it may be got under control before permanent damage is done but may be just wishful thinking i know.

Yes I'm quite keen on blue or black braces for the no hand shake alert when I'm away for work etc - the skin colour doesn't work as a deterent if you know what I mean? Also the velcro picks up tons of dirt in my hand bag and I had to pick it all off before washing them the other day which rather undermines the good work of resting the fingers really! I think the flesh tone ones are really bad for showing the dirt. Would love to customise some - we already customise things as part of our art work but will have to wait until fingers are better because the material is too thick and I have enough work to do are current projects that I'm behind with so have to save my hands for artwork!

Tilda xx

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Tilda, I have 2 splints for my right wrist, one harder one with a metal insert which I use at night to avoid bending my wrist, the other is softer and shorter, so it doesn't cover my knuckles. But, by the time I got these blogs, you have already been out to the hospital and have a new one.

You may find you can apply for the disability income and still do your artwork. You would have to check and see if there is a limit to what you can earn, as "part time". Especially since you say you are behind already, Good luck, just do what you feel the most comfortable for YOU. Keep up the wax bath too! Love, Loret

[RayinBude]

Hi I have worn splints for the last three years I cannot drive without them, I used to have black but owing to the cost I now put up with the NHS beige (Yuk) ones. I applied for DLA and was awarded High mobility and Medium care without it I would be stuck in the house 24/7 really worried about the changes this government is making to disabled benefits. I found it very hard to accept that I needed help and did not apply for it until my savings had run out and I could'nt pay the rent, too proud I suppose, but at the end of the day you have paid into the system so why not claim. A word of caution though always get help with the form , I go to me local CAB who help fill it out with me and always fill it out as though it is your worst day. Good Luck.

Ray

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Thanks for your honest advice Ray. Did the black splints wear out then? I splashed out when I thought it was just a repetitive strain thing on some beige ones as they were the only ones the pharmacy had and I didn't think to go online. They are really scruffy now though - only fit for night time really.

Having RA is a huge insight into how hard we make things for people with disabilities as a society. And I speak as someone who has grown up with disability - both my sisters are profoundly deaf from birth and my son is mildy autistic. But I think the thing that makes diseases such as RA and MS and probably many others different - is that not only can't we do things that others take for granted as we used to ourselves.., but also we have to live with chronic pain and uncertainty.

When my rheumatologist asked me what I wanted - I hesitatingly said "a degree of certainty would be good - but I realise that's a tall order?" and he replied "I think we just have to learn to live with a degree of uncertainty where rheumatology is concerned..." and yes I agree we obviously do.

But the uncertainty that goes with RA is particularly difficult to live with because it makes planning of all sorts so difficult doesn't it? From whether to take splints with you - and if so which ones, to whether we will be fit for a holiday or a job or a house or to drive or a social event - this uncertainty is very difficult to bear.

But I'm not just not incapacitated enough to find what it takes yet to apply for DLA - although I know you and many others deserve every penny you get and more besides. TTx