Hello all. I'm very recently diagnosed with seronegative RA in my hands, wrists and elbows, plus some in my feet and one knee.
I've been having very difficult pain and stiffness for four months or so in my hands which has really affected how I use them (couldn't brush my own teeth or hair at one point or lift a cup).
I've been on steroids for 7 weeks and am improved with the pain, stiffness and swelling, but not back to normal yet. I started methotrexate last week.
In the last couple of weeks I've noticed I'm dropping things a lot and my hands feel slow and clumsy. My question is, has anyone else experienced muscle wasting/weakness in their hands from RA, and is there any good way to treat it?
Thanks!
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snotts
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I and many others have slow clumsy hands generally when your RA is active. Steroids help with inflammation and pain but do not help with the disease it’s self . It will improve once your medication is working. I still get it when RA is playing up . I’ve been diagnosed 5 years.
It’s definitely half the roids and half the kindness! I found this place at my point of diagnosis nearly 2 years ago and the sudden awesome feeling realising that there are other people who ‘just get it!’ It changed so much for me mentally! This is an amazing group of warrior folk and we’re all here to support each other! Ps. I fling things daily through slow crappy grip! I have to stop and think before I grip! Welcome and huge hugs 🤗
You will get used to these feelings in your hands,,.,which I find come & go.Years ago when I was experiencing them for the first time….I bought melamine cups & plates that bounce so I wasn’t sweeping up broken China all the time!
Now out they come if my hands play up & I think thank goodness it’s nothing worse!
I also bought cutlery with padded handles which are easier to control ..saves throwing the spagbol all over the tablecloth.
Yes I was the same .. no strength or grip. Couldn’t twist, turn, pull, push, open anything for several months. Mtx will help you be able to use your hands properly again. Did for me. Can you ask to see the hospital physio for advice and exercises re your hands?
I often drop things! My grip is weak. That weakness and clumsiness may be caused by pain and stiffness due to inflammation, plus there is muscle wasting that happens when we are not able to use our muscles as much.
Now that you are receiving treatment, hopefully you will improve in the coming weeks. When I started methotrexate, which worked well for me for many years, I began to see improvement in 3 to 4 weeks, but it took about 4 months to see the full benefit. When your disease is under better control, you should be able to have better function and strength.
Oh yes I remember what that was like when my RA was rampant and not controlled. There are special exercises you can do for the hands which will help a lot. Ask your Rheumy if you can be referred to a hand therapist who can advise you and suggest compression gloves (to help with any pain swelling). My HT made me a made-to-measure cradle in which to rest my left lower arm and wrist because it was so painful and it helped a lot as I was able to relax it.
Hopefully things will improve anyway when the Methotrexate is fully working for you. But meanwhile there are al sorts of gadgets you can buy to make life easier, as others have suggested above.
If you find heat helps you can get heated gloves on sites like Amazon.But make sure they are battery ones you can charge …I thought I was being so clever…but bought ones that have to stay plugged in & constantly wiped the coffee table clear as I moved!
Yes I am seeing a hand therapist in our physio department. It’s amazing what they tell you to do and not to do with your hands. She saw that I sit with my fingers entwined, that’s a big no no apparently. I’ve got lots of exercises from her. I bought a one cup water boiler as I couldn’t lift a kettle. Also a can ring pull opener and a jar opener. There’s some great stuff on line to help us with hands that don’t want to work. Xx
I got a one cup boiler thing too and it's a LIFESAVER - no waiting for my boyfriend to make me tea and coffee, which gets a bit old when you want to drink ten cups a day!
I suspect lots of us can identify with dropping stuff, I have a cupboard full of mismatched crockery!!😂 It's worth asking for a referral to the hand therapist for exercises to strengthen your hand and help restore your grip. Also ask to see the occupational therapist who can give good advice about kitchen equipment that makes gripping easier, they also supplied me with compression gloves and wrist splints to protect the joints.
I once bounced an omelette pan off the kitchen cushion floor as my hand gave way and we have a black crescent mark of three inches on the kitchen floor to remind me! It’s not visible as there’s a kitchen mat over it and as the floor covering was new I decided not to replace it for one mark! It gave me such a shock. I then lifted everything both hands and got some lighter weight pans for when I was on my own cooking and my OH lifted all pans once home from work etc until my hands got better. It may take a little longer for Mtx to work for some. I felt a difference after 7-8 weeks and then much more improvement after 12. Were all slightly different but is say 8 weeks should show something decent in improvement.
I currently have a frying pan with a huge dent on one side where I dropped it on the floor......you can imagine the mess the Bolognese sauce made which was in it 😂😂 the family are used to my appeals for help to clear the chaos that I have created. I don't even attempt to move full saucepans or things like flower vases.
Yes, I've completely given up cooking for the moment because even lifting plates is difficult and causes pain. I broke a drawer in the freezer today through being weak and clumsy 😅
I think we all go through a huge number of adjustments as we work out what we can and can't manage, and what is important enough to persist with or seek help with. The important thing is not to best yourself up for what you can't manage, rather celebrate having the courage to get up every day and keep on keeping on despite the nonsense this disease brings. As long as the family are free and happy I learned to accept that short cuts like prepared fresh veggies and things I can microwave are just a tool that leave me with enough energy to do things we enjoy.
I was referred to the rheumatology Occupational Therapist who gave me things like wrist splints and compression gloves and also showed me various hand exercises. I wear the wrist splint in bed which really helps with morning wrist pain and I do the hand exercises in the shower every morning. The exercises help with flexibility and hopefully also build up muscle strength which will in turn support the joints.
I started DMARDS (including Methotrexate) just over two years ago and my hands are much better than they were. It takes time (and sometimes a few tweaks) but these medications do work so don't give up hope!
Thank you Boxerlady - I will definitely pursue an OT and physio appointment so thank you for these suggestions. Keeping hope is the tough thing but I will try!
Probably most people with RA have gone through a similar experience as you are going through right now. I’ve been diagnosed 12 years now and once your medication has kicked in no doubt you’ll be feeling much better. I occasionally get flares in my hand/wrist joints which are painful but to be honest o consider myself lucky that my medication keeps it under control. Good luck on your RA journey it can feel very lonely and daunting in the beginning but this forum is excellent for keeping your spirits up.
When I was first diagnosed someone recommended that I take up knitting. More because I fell in love with a very pretty wool than with any hope of helping my hands I tried this but it really helped to strengthen my hands. The odd thing still slips through my fingers but that is unusual these days and often signals the start of a flare. If I need to pick up something breakable, I hold it with both hands and slip my little fingers under it just in case. If you feel like giving knitting or something similar a try, please start slowly and build up the amount of time you knit gradually, as you would with any exercise now you have RA. Hope you find something to help soon.
Ah, I am usually an avid/obsessive crocheter (an hour a day at least) but I've had to stop because it's causing pain. I've been knitting a little to fill the time and it seems OK as long as I am really careful not to do too much...very tempting to do just one more row though! I might try tunisian crochet as it involves a different needle/yarn grip....its been mentally pretty tough as I've really missed crocheting while watching TV and had a long list of things I was excited to make. The consultant said that I should be able to get back to crochet once the RA is under control - your post gives me hope that I will get there 💙
Hi, yes I'm afraid to say that's part of the journey and par for the coursr! I think you may notice a difference when you start methotrexate hopefully. There are also some lovely fashionable compression gloves, I have the tan option, that you can try , just ask the rheumy team. Stay onboard here and share the ride with us! Good luck with it all.
Medication made a big difference to me. I get the occasional pains which reminds me to use 2 hands. Definitely ask to see the hand therapist.... I have a set of exercises I now do, they have helped but have also helped me feel that I can do something to improve things as well.
Yes I think that's it, at the moment it feels very bad because more than just dropping a few things it feels like I've lost control of my hands. I will pursue some exercises and let you know how I get on.
Hi your story sounds so familiar to me and I am sure to lots of others here
Many of my joints are affected by RA but the effects noticed most with hands
My rheumatologist referred my to occupational health early on and I was provided with exercises to improve strength also isotoner compression gloves which are like a gentle warm hug and they also made me a resting splint which is excellent
( I think you can buy isotoner compression gloves on line )
I still drop things usually my hairbrush now and I can just about manage many more things with various aids etc
I have also recently taken up tapestry which I find helps keep my hands flexible.
It is good because everything , including needles and threads bigger so more manageable plus the fact there are some lovely contemporary designs these days
Good luck things will get better - when I fist was diagnosed with RA I would never have believed I would ever be able to do the things I can again now x
Tapestry, wow! I guess this is a good excuse to find another hobby (or three) to pick up! Thank you for replying and sharing your experience, it helps to hear that you have found things that work.
I experienced exactly what you describe when I was first diagnosed with RA, and not just hands and arms but legs and feet too. Because I couldn’t grip things, such as a toothbrush I bought extra large things ( electric toothbrush with a big handle etc ) and some hand braces. These helped a bit, but the main thing I think that helped was medication, and the RA physiotherapist who advised hand and leg exercises.
This was about 4 - 5 years ago, and now I’m nearly back to normal, but I still have good and bad days. Don’t give up with every day exercise, even if it’s just small things, it will help keep your muscles from wasting, but don’t overdo exercise as it will catch up with you the day after.
I which you a speedy healing process and hope that your life soon gets better.
Thank you Chris! I am trying to walk daily - it seems pretty easy to overdo things and I'm definitely still finding the balance between what gives me energy and what makes me crash. Thank you for sharing your thoughts.
As others have said…..it does improve once meds kick in. I was diagnosed at 30 and remained a secretary until I was 50. Have done other jobs after. Yes my hands are clumsy but at 68 they are still working well. Hopefully the Methotrexate will kick in soon and reduce the inflammation for you. There are so many meds out there now for you, that werent available for me. Take care
Indeed your not alone, I too was exactly the same as this 3yrs ago, I couldn't do even simple things like tie my hair back, get my son dressed for school, I dropped lots, broke lots and it still goes on unfortunately. I find wrist splints help a lot n they keep wrists in place which help with the pain too (ebay/amazon under £10each). With your feet situation I found very soft spongey slippers are a must now days (never thought I'd be buying slippers every month at 39 thought at least till I'm over 50 lol) also I tried acupuncture sliders (ebay £8-10) which was great for when I'm standing doing dinner or dishes etc, then in evening I was using lavender socks which I randomly found in H&B on sale but now instead I make my own style by using food bags n normal socks lol first I add a few drops of rosemary essential oil (great for inflammation) to any oil/cream & rub feet, put bag over foot & normal sock on top which then soaks in nicely n helps with swelling.. Everyone is different and all different things help, unfortunately my wrists are playing up atm that jus typing this on my phone is hurting hence I don't often write on here but I just wanted you to know that ur not alone with ur experiences right now.. Keep fighting the great fight.. X
Thank you 💙 I know, I've just bought some very sturdy, very sensible slippers 😂 They may actually be one of the few silver linings of all this, I did not know what I was missing!
Hi snotts. Your message really resonated with me - I was diagnosed with seronegative RA a few months ago, and suffer with it in my hands, wrists and toes. I also struggle to grip things sometimes, and other times my hands feel ok. I've been referred to physio and am seeing a hand specialist last week. I've also started on hydroxychloroquine, but am having to build up slowly after experiencing lots of side effects first time around. I've been lurking on the site for a while, and it's just nice to know there are lots of people out there who have been through similar experiences and are willing to share advice etc. I have no helpful advice, as I'm new to all this too, but just wanted to say you're not the only going through this at the moment. Take care
You are just like I was at the beginning of this disease. In 1967. Right knee, hands , right elbow and feet. No effective medication until the 1980s when I started my first DMARD quickly followed by the second - Methotrexate. I still take it.
As others on this post have said, you should find a great improvement as your meds start working - this is so important to avoid the awful deformities that might otherwise ensue. It does take some patience but as J1707 says - hang on in there!
I do have the awful deformities, but that's my bad luck for being diagnosed when nothing much was available.
Ah yes, my grandmother was diagnosed when she was 19 and at the time, the only treatment they could give her was morphine and they told her to move to a warmer climate. It's incredible how medicine has come on since then and I definitely feel lucky to have options. It's great to hear that you've been on methotrexate for some time and it is still working 💙
Same here, lost grip, weakness and keep dropping stuff - it’s so frustrating. And I work in a computer all day, so it makes it worse. As someone else mentioned, I find that compression gloves really help. I use the IMAK arthritis gloves, I even sleep with them on. amazon.co.uk/dp/B000N4G8IQ/...
What huge response to your post! just shows that we all have issues with strength in hands. the thing I find is most annoying is that it's so variable (and unpredictable) One week hands behave reasonably well - then they're awful for no apparent reason. Another vote from me for compression gloves, changing to lightweight pans (and binning then cast iron casserole pans!), lightweight garden tools, and keeping hands moving when I can. Hope you find improvement soon
I can't believe how many responses I've had, it really, really helps to know I am not alone, and gives me hope to see how people have found ways to overcome this particular issue. Thank you for your response!
Yes I have alot, drop things all the time. Similar to you, I was diagnosed in Nov 2020, had immediate steroid treatment and started Mtx last mth too. Steroids did not help and I could not use my right hand at all. Physio gave me pen grippers, compression gloves, hand splints, finger splints the whole lot, and it only eased it mildly. I've had to be off my Mtx recently due to the flu (which I need to do my own post question on) but surprisingly I did notice that once off Mtx symptoms are 100 times worse, I hadn't even noticed before that it was helping, because of all the side effects but yes like you, I drop things and grip is bad/non existant. I have been gradually changing my wardrobe for clothes I dont have to button etc or trousers/jeans that dont need zipping. So I totally get the stage you're at, same here👍
My RA started in my hands. For a long time I wore splints, not ideal but it did help. Hopefully, as the methotrexate kicks in, there will be an improvement. I was referred to a hand therapist who gave me exercises which were designed to strengthen my grip and improve my dexterity. She also gave me a special support for one of my hands. The exercises worked really well, and although I no longer need to do them every day, I still do them on a regular basis.
My official RA journey started a couple of years ago (in retrospect there probably had been other signs for a while), when my hand/finger joints swelled up dramatically and painfully. As I was a working musician there was no ignoring this.
Quick referral to rheumatology (1 month) Sero neg RA diagnosed. Started straight onto steroids for the next 5 months (this included tapering off) and methotrexate. Within about 5 weeks I was playing guitar again, a bit. Now I play my instruments, knit, sew. At the start of the pandemic I joined our local Scrub Hub making the easier sewed items needed by the health/ care workers, as my way of giving back to the NHS who gave me back the use of my hands.
They are weaker than they were, and I do drop things (a full teapot recently), but I have a jar/bottle grip opener, and generally a lot of work around. The main thing is I can do the things that matter most to me.
I retired from being a working musician after 18 months of the pandemic closing all my work down, and I'm 71 anyway! I'm saving the rest of my playing days for me!!!
I have similar issues but I have degenerative osteoarthritis. The occupational therapist has been very helpful with suggestions and exercises. You might want to try that as an option. Good luck and I hope you get some relief.
My hand at intial diagnosis basically couldn't fasten my bra or do my hair or many multitude of tasks but over time and with multiple drugs things have got better. I don't have the strength or dexterity I used to and get numbness at time because of damage to joints. The meds work but sometimes it's finding the right combination. I remember the rheumatoid patients when I first started nursing 40 years ago. Things are much improved. Talk to your rheumatoid team bare with them while they find your best. Take your meds where you can, be honest with your team and listen. Need extra help ask about physio, occupational therapy support. Mine of information rheumatoid society. Hopefully not be that long till you find the one. X
Feel for ya. Had a year of this due to various reasons my MTX taking has been erratic resluting in pain pain pain grrr .Also weakness in my shoulders upper arms hands thae last looking like sausages.
I've got so desperate this time round I've got my GP involved with RA dept, resulting
in what is called triage appt with RA consultant.
My main reason for this is to come up with a long term plan to control pain, due
to not wanting to be on addictive co-codomol rest of my life.
Some of the things I try are capsaicin cream on my knees to reduce pain. Has to be prescribed and only a little used.
Hot gel pads on painful areas. Exercises in shoulders and neck along with massage in that area to get lymphatic system moving.
Obviously usual array of analgesics .
Lastly coming on here seeing loads of us are endevouring to keep trying to put one painful foot forward.
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