A question on hands.
I have been having good results with Cimzia and have seen very little swelling in my hands. Yet they are still very stiff and sore at times. Is this what I should expect? Can anyone confirm.
The other possibility is that I push them too hard as I use tools quite a bit on the farm - hammers, shovels, chainsaws, etc. Only a little at a time of course. I also play piano and guitar most days and so I find lots of things to blame for the soreness. But I keep fumbling and dropping things - the latest being almost-hatched duck eggs, two on separate occasions.
The medical experts say keep using your hands if you can or I would consider trying to rest them for a few weeks.
Any thoughts? Do anti-tnf medications reduce swelling but leave behind the pain?
Good to hear from you @jcol. Hands are pretty complex aren’t they? I have had some success with Voltarin Extra Strength on things like knuckles but don’t bother with the regular strength…about as useful as butter. I can relate to the frustration of sore hands as I also use tools a lot on our hobby farm. I find that I have to continuously know my limits BEFORE crossing them…which is hard for me because I tend to attack all work with a lot of gusto. In the aftermath, I always pay for the enjoyable moment of exertion. I think many of us in the same situation have a fair bit of good muscle strength (my kids call into old man strength when I open jars that they can’t) but that muscle strength is limited by the ligament/tendon connections which are the big problem with PsA. I was cutting wood and then splitting it yesterday and today my middle finger two knuckles are very painful without much visible swelling…it’s all internal. Also, as you know with PsA, this month it might be your hands but then it moves on to your feet or knees or…? I’m slowly discovering that today’s pain may not be eternal. Pain and invisible swelling go “hand in hand” so your anti-tnf meds may not be doing enough and enough might not be achievable. Last thought…I don’t use it often but by adding Celebrex to my “diet”, it seems to hit some of the inflammation that the rest miss. Good questions….others on here are vastly more medical and experienced than I am and may chime in like @tntlamb Peace and all the best…keep moving!
That’s been my experience, that even with decent disease control, I can wind up with that sort of stiffness and pain. But dropping things. . . . that makes me think about carpal tunnel.
And you definitely don’t want to drop the almost hatched duck eggs. Baby ducks are just the cutest! We used to raise them.
I have just had surgery for Carpal Tunnel and the dropping things raised a little red flag with me, just like Stoney. Have you ever had tingling or numbness at night? Or waking up with them numb?
Might be worth a discussion with your GP, I’m not sure if Carpal Tunnel can present without tingling and numbness, but they can do nerve conduction studies to rule it out or in - it also causes stiffness and pain in the morning, even when arthritis is in remission.
Yes I have had carpel tunnel problems before the anti-tnf treatments but seem to experience this as general soreness and stiffness of the hand joints. It never really goes away. I am rarely able to make a fist with either hand. I have to admit that saddens me when I remember all the work I put in at karate in my younger days - I still have a punchbag I haven’t the heart to throw out. Mind you, I also have my football boots in the attic. Perhaps it is time for me to get real.
You are spot on about the ducks. I was heart-broken and it was still just an egg. But I am very fond of my ducks and I love having young ones to raise.
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Sounds like you have had similar experiences, Amos. But do you keep going or do you rest them - that is the choice. Sometimes it seems a break helps, other times they are worse than ever. But you are right about respecting your limits. Failing to do that will always cause problems but when you are having some success it is so easy to get carried away.
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Yes I have had those symptoms in both hands as well as de Quervain’s disease affecting both sides and various tendon and joint difficulties but all that has really quietened down with the anti-tnf treatments. Certainly the swelling has and the all night severe pains I was getting. I always felt there was more going on than one type of surgery would fix so this has been a brilliant result for me. I shouldn’t be complaining really.
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Have you ever tried a hand wax bath @jcol. You can buy them on Amazon etc. It’s an old fashioned remedy but I know several people with hand issues say it helps alot. More since your Cimzia is actually helping considerably anyway. That might just help somewhat more? Just a thought and probably worth the £60 or so to see if it helps.
I’m really glad the anti-TNFs have been so good for your hands, I had great success with them too (literally all over!). For me once the inflammation was gone (visible swelling was never a thing for me), then the pain rapidly subsided too.
What I discovered is that even with good disease control and no pain, the low grade chronic inflammation (as well as all those periods it wasn’t under control) can eventually cause structural changes in your wrist that don’t reverse with successful medication. In my case, the Carpal Tunnel was primarily mechanical and over a year and a half the nerve impairment became very severe. Hopefully mine will repair in a year or two now they no longer are being squished, in the meantime I still have quite a lot of numbness in my worst hand and a little in my best hand. It’s better, I understand, if you can get them checked and treated earlier than I did.
For the first year they would get worse then better with steroid injections or change of meds, but the last 4 months they were completely resistant to any treatment, and were very painful as well, with me typically waking around midnight, then every 20 minutes after that when I would need to alternate position (hang the sore hand over the side of the bed) so I could go back to sleep for another 20 mins before doing that over and over again until 6am. Forget working at a computer or driving for half an hour, I couldn’t even take ten minutes to eat dinner without having to give my hands a break in the middle!
Some people may well have carpal tunnel on and off for years without it getting to that level, but that wasn’t my experience, and definitely starting the process of diagnosis and initial treatment early make sense to try to prevent things getting as bad as I got, or potentially worse where motor nerves are affected and damage to sensory nerves becomes permanent. I’d really encourage you to talk to your rheumatologist and/or see your GP about it sooner rather than later.
Ugh, hands…
I have peripheral and axial issues with my PsA but my hands and wrists bother me probably the most. Often it feels like someone has taken a hammer to them. I don’t get a lot of swelling but I do get a lot of pain and stiffness. I’m also starting to get some deformity. I like to cook, bike, paddle board, kayak…all bad activities for hands. I have many ways of holding a steering wheel or handle bars.
The arthritis physio clinic in town made me little finger splints to prevent/reduce my developing Boutinnere’s deformity to wear at night. I also sleep in wrist splints with thumb support to rest my wrists/thumbs in a neutral position. I have Swan Neck deformity rings to wear during the day as well, and exercises to do. And I have wrist guards to drive in that don’t include the thumb.
IMHO it’s a balance between rest and use…and not overdoing (isn’t that kind of everything with this stupid disease - motion is lotion but don’t overdo it ?). Stubbornness helps - I’m afraid if I stop doing things, well, I’ll just stop doing things and then I’ll be hooped.
I was always frightened away from the prospect of surgery for Carpel Tunnel - my mother and sister both had it - because it might affect my ability to play piano or guitar for an extended period. They are such an important part of my life and probably mental health. Also the Carpel tunnel swelling and severe pain especially at night was replicated in many other tendons throughout my body; my neck, feet, heels, ankles and knees. An operation was not the answer for me.
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I hadn’t come across Boutinnere’s deformity before you mentioned it. But I looked it up and I think this is already started in some of my fingers. We learn something every day. I have always paid attention to my hand position when sleeping because of the problems it has caused me. Perhaps I should look into some of the aids you have mentioned. If anything is worth the attention certainly it has to be hands.
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You had my attention before you mentioned the ÂŁ60. All joking aside though, I will look into it as everything needs to be considered. I have not come across it before which shows I should be getting out more (Covid permitting).
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Mine are getting worse. I spend most of my day working in spreadsheets and my fingers have gone from stiff and swollen to the joints hurting bad. I found some compression gloves on AMAZON (I’ll try a description here for anyone that wants to look at them) Oh, there are two listings for the same gloves. One is $20, one is $10. They are the same. I usually wear them nearly 24 hours a day. It helps me type, some. They help the swelling, some, and the pain.
I rub la idocaine and Pensaids mix on them during the day. I’ll probably start using lidocaine and Volteran. The Pesaids is a script and it is expensive.
If you can get to see a specialist hand physio they can make all sorts of splints etc solely for your hands which helps a lot. Along with possibly a wax bath!!!
Sounds like what you need is a holiday. Anything that restricts circulation scares me a little I must admit. Those horrible socks they make you wear in hospital are a case in point. I was in for one day and I couldn’t wait to get them off.
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@jcol I am on Cimzia and have been for quite a while now. I have the same experience. I don’t have notable swelling like dactylitis but I definitely still get stiffness. I actually use my hands at times to gauge my inflammation level. I do this by trying to touch my finger tips to my thumb one by one. Then I try to touch my finger tips to my palm one by one. Typically, if I am a day or two after an injection my fingers move well. At times when they get stiff my DIP joints often feel warm, not blazing hot, more just simmering. I use a small dab of Voltaren (Diclofenac) gel, an inch or less, and it often clears the finger stiffness up pretty quickly. I already have had carpal tunnel release on both wrists. Despite this, when my hands are really stiff I have trouble with grip strength and have dropped things but typically heavy things. I don’t have a problem with light objects even when my hands are rather stiff. I have done physical therapy and recommend it. Carpal tunnel surgery did not negatively affect my ability to play guitar. The PsA does though. My hands will stiffen up after a while. The same is true for me with keyboard (computer, not musical). This is my experience anyway. I agree with others about pursuing a nerve study. Good luck
So far I haven’t come cross anyone else on Cimzia so it is great to hear of your experience. I have so many investigations going on at the moment that I am reluctant to kick off another. I might try the Voltaren gel though as it would be simple to try. I was wondering what you meant by physical therapy and what this involved. That sounds hopeful.
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I have recently done physical therapy for wrist and hands. The therapist assessed grip strength and range of motion. A session started with stretching, specifically wrist flexor and extensor stretches. There are a whole series of hand and finger exercises. They used equipment like thera-putty, web hand therapy devices, Twist and bend exercise rubber bars. My therapist uses equipment made by a company called CanDo. I actually bought some items to be able to do the same exercises at home. There was some work with weights (small dumbbells) doing wrist exercises (curls/reverse curls). They also had some tools for exercising fine motor skills. I am really lucky as a physical therapy clinic opened up right across the street from where I live. They have an area dedicated specifically to hand and wrist work. I was able to objectively improve my grip strength. This was quantified with a measuring device by the therapist. I do the stretches regularly at home. I too have a list of issues I am actively working. I understand having a lot of things on your plate. Sometimes you just have to prioritize and work your way through the issues one by one. I am facing shoulder surgery soon. So that is my focus at the moment… well, for the next 6 month (post-op physical therapy) For me, a little Voltaren is really effective at relieving my hand/finger stiffness. Good luck!