Does anyone else do this?: I've recently been... - LUPUS UK

LUPUS UK

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Does anyone else do this?

VanK profile image
VanK
15 Replies

I've recently been diagnosed with a "lupus-like" UCTD. One thing that's been happening of late is that I keep dropping things. Not in the usual monthly/clumsy way, but I'll be holding a fork & it literally drops out of my hand. Its like the muscles in my hand all of a sudden become weak & give way. This morning I was in the supermarket & a yoghurt pot just slipped out of my hand. Really embarrassing as I walked around the shop with yogurt down my jeans & trainers! Thankfully they were very understanding in the shop.

Be interested to know if this is a manifestation of having a UCTD or something else?

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VanK profile image
VanK
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15 Replies
PMRpro profile image
PMRpro

Lots of people with polymyalgia rheumatica find they drop things because they get sort of cramp and aren't holding whatever as firmly. I did - but I don't remember it being quite as clearly weakness.

VanK profile image
VanK in reply to PMRpro

Thank you so much for your response. It definitely seems to be muscle weakness rather than cramping.

Natura profile image
Natura

I have been doing that my entire life. But, it has gotten worse. I call it my brain hand disconnect. Like my brain doesnt know its holding something. Very frustrating. Sorry you had a bad day.

VanK profile image
VanK in reply to Natura

Sorry to hear you have a similar issue! Glad to know I'm not the only clumsy one!

Leemaree44 profile image
Leemaree44 in reply to Natura

That's a great way to describe it! For me it's like i go to grip something to pick it up, and my hand just 'pretends' to have it lol. It reminds me of a claw in an arcade game. OR i get this thing periodically like my brain doesn't register the position of my hands, and I keep knocking stuff over 😔

Kazunlocked profile image
Kazunlocked in reply to Leemaree44

Yes, me three. When initially diagnosed (SLE) & terribly ill it was much worse. Now (5 yrs later) it comes & goes.

misty14 profile image
misty14

Hi vank

Welcome to the UCTD diagnosis club, there are many members of it on here so you've come to the right place.

I 'm a member and did drop things a lot and like you they slipped out of my hands!. I've also had the carpal tunnel op in both hands which can lead to muscle weakness!. Does that apply to you?. I've recently been to O. T where I've been given hand strengthening exercises and I do them everyday and don't drop things like I used to. You can refer yourself to O. T thru your Rheumy dept or your GP can if not. Hope that's helpful. X

VanK profile image
VanK in reply to misty14

Hi misty14 so good to hear... I read somewhere that 25% of people who go to see a rheum have a UCTD (am guessing this is initial or ongoing diagnosis?). How long have you had?

Funny you should mention the carpal tunnel, I do have to varying degrees, haven't ever received any treatment for. I did see a physio last week via rheumy who has given me hand exercises, so maybe time to get one of those exercise balls & start! Its good to hear its been helping you... I sometimes forget to be the compliant patient!!

misty14 profile image
misty14 in reply to VanK

Hi vank

Interesting that 25% of patients get a UCTD diagnosis!. That's high and shows how difficult this area of medicine can be!. I've had this diagnosis for 30 years now so I think it will stay at that now!. I know it can change to one of the CTD's over time so needs monitoring which I get but I think it would have changed by now.

It's great you've seen a physio and you have hand exercises, can recommend the squash ball too. You can also have splints to help with carpal tunnel as it can be painful!. Hope your going back for a follow up!. Good luck and hope they help. x

soootired profile image
soootired

I'm also the same. For no apparent reason I just drop things A LOT and like you sometimes it's in the supermarket and it breaks. Last time this woman in the same aisle as us gave me a look and I felt really stupid and useless. My teenage daughter was with me and laughed it off... mummy's broken hands again! Observer's just don't get it, a shampoo bottle or deodorant can aren't exactly heavy are they?! It's incredibly frustrating and does happen almost daily. Especially loading and unloading the trolly when I'm trying to hurry, cans of baked beans rolling everywhere!

Interesting to hear that exercises help, misty, I might look some up and try some.

VanK profile image
VanK in reply to soootired

Ah, good to hear soootired although sorry to hear you have the same experience shopping. I dropped a jam jar recently (in same shop)... worried they will ban me! My physio has given me hand exercises to do so may be worth trying to get a referral so you can do the same? I will get on the case today to start them.

Have a good day.

VanK profile image
VanK

Thanks for advice Hidden - good to hear the hydroxy has been helping. About to start mine. Will pm you re the appointment, was good.

Nikki246 profile image
Nikki246

Yes I suffer too. I'm always dropping things, I have muscle weakness in my hands but I know what others mean when they say it's like the brain and hand haven't connected.

I compete in Dressage and struggle to hold the reins, my Lupus nurse has done me a letter to give to British Dressage in the hope that they will allow me to use looped reins. (these loop round my hand so I don't have to try and grip the normal reins). Of course there is a £50 charge for them to read the letter and say yes or no!

VanK profile image
VanK in reply to Nikki246

Oh best of luck with that Nikki - I hope its a positive result for you!

Nikki246 profile image
Nikki246 in reply to VanK

Thank you :-)

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