Morning everybody!

Just thought I would provide a very brief update after my recent post about the rheumatologist appointment. I'm feeling a little bit better now. For the time being, I'm doing okay. I have been watching my diet very carefully recently and perhaps this has helped, I'm not sure. Anyway I have another appointment and I'm looking at trying to stay on humira for another 3 months..

In the meantime, I bought myself a new synthesizer/keyboard and I am loving it!! However, I do have arthritis in my hands and am wondering if anyone can offer some pointers/advice if they have has similar experience.. Are there any ways to reduce inflammation/stiffness in your hands? Do they tend to typically worsen over time with AS? I can't imagine not being able to make music, and it is something that I am seriously looking at trying to turn into a career (ie, get into the music industry or become a sound engineer/producer or something like that).

Hope as many of you are having a pain free day as possible,
Seb

Hi Seb!!

I have AS really bad in my hands, my wrists are fused and it seems my hand bones are trying to fuse as well. I believe my wrists got this bad because a couple of years ago when they were really painful, I held them as still as possible. Not too smart, I am now realizing! lol. My wrist bones aren't actually fused, as my physical therapist can pull them apart, but they do not bend. It's more of a frozen tendon/ligament problem related to the AS. It's complicated, but I feel your pain!! We use our hands for so much in this life!! We need to keep them moving.

For me I have found that when they really hurt, doing the dishes in a sink of hot soapy water helps! lol. I think the warm water helps them get moving. If you did a contrast bath into cold ice water or used ice packs where it hurts, that would lower the inflammation too. I also like using some of the muscle rubs on them, I like "deep blue" by DoTerra.

I just started taking piano/keyboard lessons and it is challenging but I love it. It is increasing my hand strength which is very needed!! I say keep up the good work! Stretch and strengthen your hands every day. For physical therapy I would stick my hand into a large bowl of dry beans and then make a fist and open my hand over and over again. It really works! And whatever you do with diet/humira/vitamins or whatever helps you keep your inflammation down will also help.

Good luck!! That would be an awesome career for you!! Shoot for the stars!

-Donette

People can and do have AS affecting their hands, but bear in mind that its RA and Osteoarthritis, or PsA that are the ones that most typiclly contribute to deformity and loss of function, so don't necessarily expect it to happen with AS.

My dad (with AS) played piano all his life - often two or more hours in a day, and sometimes in public as well. I did notice that he stopped playing such fast stuff as he got older, and he would keep his hands warm (with gloves, or on a heat pad) quite often, but apart from that it only really affected him in a very minimal way. Dad composed and arranged music too, and he did do some computer trickery in his later years as well - playing stuff at a reasonable or even slow speed to record it, then bringing it up to the right speed on the computer!

I didn't play piano, but was reasonably good on the violin. Its only in the last few years that I have had to stop - the tip joint of three fingers has bent to the point that it is too hard to get my fingers in the right place on the strings. Bear in mind that I am in my mid-50's and it was only about four or five years ago that I even started with NSAID treatment. Had I been diagnosed and treated earlier, I doubt it would have got to that point. I do have hand pain, but its not enough to really call a permanent disability or stop me doing what I want to do very often.

If hand pain is a problem, its quite a good site to use NSAID gels on.

I think best thing to do is just hope that humira (or one of the other biologics) really does kick in properly sometime soon, and you never have to worry about hand pain, inflammation or deformity.

Hi Seb

I was diagnosed with As about a year and half ago and at christmas
last year I started having real bad pains in my hands.
I couldn't do alot of simple thingswithout been in horrid pain, I
couldn't lift the kettle or pans, I couldnt write more than a sentence
without been in pain.
I even went out for a meal with my partner, 5 year old son and my parents
my hands were that painful my mum had to cut up my meal for me and I
felt so embarrased in front of my son as even at 5 he cuts his own food.
I went to my doctor and he said gave me Amitriptyline which I take on a night
they do help alittle but when I mentioned it at my next rheumy app
the rhuemy said As doesnt usually affect your hands and then said they
thought that it was PsA that i had aswell as AS.
My hands still affect me now even after been on Enbrel since Jan this year
so I really dont think that the biologic helps my hands at all.
I hope that you get something to help ur hands and I would love to play
the piano so heres hoping that you can heal enough to play it.

when my hands flare, i limit what i do with them, saving them for the things i have to do, really want to do. i'm extra conscious about not "wasting" them on things that can wait til the flare is over.

when my hands flare, i do contrast baths, hot as i can stand water for 1-2 minutes followed by ice cold water for 1-2 minutes, back and forth for 15-20 minutes, repeated several times a day. when they are just a little flared, extra time in hot water, like doing all the dishes for awhile helps.

when my hands flare to the point that i can't manage on my own, i go to a hand (physical) therapist. i've had to do that twice and both times it saved me! once i developed very bad tendonitis then scar tissue in my dq tendon. a cortisone shot plus the PT got me functional again. the other time, i had torn a ligament in my ulnar wrist. cortisone plus PT plus no use of the left hand for 2-3 years. yes, it was that serious. and yet, i'm here to say, even injuries that bad can heal with time and patience.

your hands hopefully will never be as bad as mine. but if they ever get that bad, it may only be temporary. you may have to take a temporary break, but then again you probably won't. and there are things like voice recognition soft ware for computers and more and more things (even music) production can be done with computers. stevie wonder and ray charles are/were both blind and produced great music. don't ever let anything stand in your way. if you want it badly enough and you sound like you do, you will find a way around any obstacles that come your way.

from all your posts, it sounds like you flare, like me. thus if that's the case, you may have to take little breaks, but once the flare is behind you, you should be able to get back to whatever you want to do in life.

and if it ever gets to be more than you can handle on your own, that's what doctors and PTs are for. they've often brought me back from the brink, so to speak.

Seb,
AS has done a number on my hands.

Right now the ache in my hands is what wakes me in the morning.
Stay active, do what you can do.

Are you on a diet????

How are you today???

Thanks for the responses.

I am currently watching my diet a lot better than i usually do and have been feeling a lot better. Whether it is to do with the diet or humira kicking in, I'm not sure, but whatever it is it's working now. It's great to feel good and positive for a change. I Havn't noticed a reduction in joint swelling and stiffness in my hands yet unfortunately but I'm hoping that I will in the future if I watch my diet and take my medication??

I know I have the ability and determination. Problem is that a musician needs their hands in good shape. Hopefully things work out though.

Seb