Hi Debbie

I went through a similar thing with my hand and it is scary because you don't want to lose your ability to move your fingers. I don't know if you'd be up for doing this, but here's what I did- I cut a piece of plastic (I used an ice cream container lid, so it was strong but not too strong) and cut it into the shape of my hand when my fingers are straight, just cutting it a little short at the top so the tips of my fingers could curl a little. Then every night, I would bandage my hand (not too tight) against this piece of plastic and use it as a splint. Sleeping with my hand like that was the best thing for me, as before that, every morning I had to spend ages getting my fingers moving after they've been curled for the 8+hours I'd been asleep. I did that for quite a while, and did a lot of physio each day to strengthen my fingers.

One thing I did (that you can do anywhere, anytime) was to put my hands together (as if you're praying) then slide one hand up the other, letting my fingers curl over the top of the other hand, then slide it back and do it with the other hand.

Another easy exercise involves keeping your hands in the same praying position, then push your left hand against your right hand, so your right wrist goes backwards, then do the same to the left. This helps with your wrist movement as well as your hands as you push one against the other.

Squeeze balls (or playdoh, which is easy to make from pantry items, I can give you an easy recipe if you need one) are great at strengthening your fingers, too.

Oh, and one more: sit on a lounge chair that has an arm to it. Sit normally and put your arm on the armrest part, palm down with you fingers hanging over the end. Then slowly slide your arm back so your fingers are now flat on the armrest, then go forwards again so they can curl. Do this quite a few times, sometimes leaving your hand in the flat position for a few seconds before letting them relax over the end of the armrest again. You can slowly build up to doing more repetitions each time you do this exercise (so sliding your arm back and forth 5x in a row, or 10x in a row), or do it more often each day (like doing 5 reps, 3 times a day).

Those exercises (as well as the splinting idea) can be done anywhere, any time, with no equipment needed, so there'd be no worries about being on holiday and not getting to a physio- You can even do them on the plane!


As for the baclofen, I take 50mg a day (2x 25mg tablets at night) and it works wonders for me. I've been on it virtually nonstop (I come off it once a year to check it's still working ok) for over 9 years. When I come off it, I get horrible cramps and spasms in my hand and arm. My hand will seize up like a claw and will have me in tears, or it'll feel like someone is ripping my forearm muscles in half. Baclofen doesn't make much of a difference to my leg or foot, but that's ok, it's worth being on it just to have my hand and arm cramp and spasm free. If you can tolerate the baclofen ok, then it's worth trying to get to a higher dose and seeing if you'll get any benefit for it, but as always, we have to weigh up the pros and cons of a medication and sometimes the cons have to win

Anyway, I hope these suggestions help. I have great use of my hand and arm now after doing these things. I used to not be able to grip a spoon or pencil, now I can pick my daughter up, hold a 2 litre bottle of milk etc etc. I have to constantly work on strengthening exercises but I feel so much better than I did during the 3 years I had of absolutely no function of my arm or hand. I hope you can come out the other side of this smiling too

Oh, I almost forgot one last thing I want to say... have an awesome holiday!

x Kate

We missed you Kate...

Welcome to NeuroTalk, Glad to hear you are going for it with your hand. Something I feel I benefited from was massage therapy and physical therapy.
Besides my hands, I had frozen should in both sides. This is how I came thru it, pt & Massage.
Hope the best for you. Keep in touch and let us know how you are doing. Your new friend, loretta

They used "parafin wax" on my hands and elbow when I was still going to PT
it really felt great and definitly losened things up. You can buy the tank and wax from a medical supply place or go on-line and google parafin wax. I believe parafin wax is a little different than regular say candle wax so be carefull before you use it. Great idea....

Gabbycakes

Hi Debbie,

So sorry you are dealing with this right now! I DO understand what you are going through as I have Dystonia (a complication of RSD) in my left leg and right arm. My leg is permanently rotated out to the side in eversion and no ammount of medications, muscle relaxants and PT have helped so far. My Doctor is now wanting to try Botox however, I have had severe reactions to nerve blocks etc so i'm not sure if i'm willing to try that at the moment.

When the Dystonia is really bad in my arm, it curls up like yours. When it was really bad last year, my arm curled up into a fist and stayed like that for 3 months. I was having PT 2-3 times a week and doing exercises at home but nothing worked unfortunately. It got so bad that my Doctor had to take me to the Operating Room to try and open up my arm, clean it and cut my fingernails as they were beginning to dig into my skin.

I know it sounds really stupid, but the one thing that got my arm to start opening up was getting a new puppy. We'd lost our 14 year old Springer Spaniel so my parents got another puppy and i'd sit and stroke him for hours. After a few weeks, we started noticing that my arm was uncurling and eventually, it got to where I could start and hold pens again so i'd practise drawing. It was EXTREMELY painful - i'm not going to lie to you - but it WAS worth it in the end!

Cake's given you some great advice. My PTs recommended squashing soft balls/toys like she recommended but unfortunately, in my case, my arm was in that tight of a fist that I couldn't force it under. My mum and I were always told that my thumb was a trigger point and that if I massaged it, it would hopefully get the muscles to relax so you might want to try that.

I hope you are feeling better. If you ever want to talk, i'm here!

Alison

1. Contrast baths/showers or sinks of cool then warm water
2. Warmth; be careful not to over heat
3. Lidoderm patches
4. Move the fingers slowly as it opens, never in a forced manner
5. Yes, the parafin wax helps as does warm wet wash cloths. Moist heat.

to promote circulation

Circulation