I just don't get this. In the beginning when I could barely walk, get up, turn over, etc. my hands were never an issue. Now it is the most painful issue. Too damn confusing. And frustrating!
Jake, I had the same problem. I completely stopped doing anything intense and the problem subsided. Previously, I was light jogging, cycling moderately, and swimming with intensity. I went to just slow walking for a few weeks and hand, finger, wrist pains subsided. Also, I stopped drinking alcohol and quit eating sugars and bread (went low carb) for those few weeks. So, not sure which helped the most. But I think both intensity of exercise and diet had something to do with the problems with hands, wrists and fingers.
I am willing to try giving up my 4 slices of bread a day. I only walk so no intensity there, although I do go 15 minutes a mile. I was wondering if being on this tablet 10 hours a day contributes to the stiffness/pain.
both 15 minute mile walks and 10 hours/day on computer sound pretty intense.
Yes.....both are outlets for me as I go through this lovely trial.
One other thing that seemed to cause pain to wrists and hands was processed meat and food. I ate a whole pizza one night, next day was brutal on hands . Seemed like too much of a coincidence.
I'm not having any bread today. Going to try mostly protein tonight. The only thing I did differently during this week that might have brought this pain on was I started to swing my arms while walking....actually swung them up to eye level and quite forcefully. So that might have done something since it was an action I never did before....ever.
Bingo! That’s the kind of stuff that would have caused pain in my hands the next day. Swinging arms forcefully combined with a fifteen minute mile walk would have gotten me too.
Can you use “dictate mode” on a tablet, like you can on a phone? Might ease the wear and tear on your wrists.
Well, I mostly read newspapers online from all over the country, (countries).
So not holding the tablet will probably help a lot.
My new plan. 👍
Gluten is an enemy of PMR. I am a bread and pasta girl. I no longer eat it. It has made a huge difference
It may not be the gluten. I was earing entirely gluten-free when my PMR originally developed as the only way to avoid wheat in the UK.
I am allergic to something in the structure of the wheat starch in highly commercialised wheat. I can eat other gluten-containing grains without problems. As it happens I eat a low carb diet - which eliminates most grains obviously - but gluten-containing bread is no worse for me than gluten-free products which are exceptionally high in simple carbs.
You could be suffering from a certain amount of neuropathic pain in those areas.
Especially if you have been overcompensating for your shoulders and putting more of the weight of your arm activities lower down the arm and in the wrists .
Something we quite often do when we are trying to protect other body parts that are in pain from moving.
People protecting their hips for example often get greater knee or lower back pain from changing their usual walking gait and putting extra weight and pressure in those areas. This can also affect our ankles and feet too.
Have you also reduced some of the more physical activities you did before ?
This often causes a rebound of circulatory tingling and pains and muscle tightness .
Both of these types of pain can be relieved with gentle rotating and moving and massage of your wrists , hands and fingers or ankles and feet.
It may be relieved from a standard dose of paracetamol , heat or cold therapy ,or if it persists and gets worse it might be wise to get a GP appointment to discuss it and get some help from them in terms of neuropathic pain relief.
Adding a good vitamin and mineral supplement to your diet if you don't have one , especially including magnesium , zinc , Vit D, E, A, K as these nutrients help with body repair and nerve function . Your body is doing alot more coping with clearing inflammation and processing new medication so nutrients do get depleted and that often shows in nerve tingles , aches and pains in the extremities.
Increasing the nutrients in your diet with less processed and sugary foods and more protein, good fats , fruits and vegetables and plenty of fluids helps your body help itself .
Many of us cut out gluten or alot of carbs and find this helpful to cope with general health on steroids.
It could be PMR related or is also frequently a side effect of steroids .
Tingling , prickly pain from slight changes generally in the circulation or slight inflammation in your peripheral joints.
Often the gentle exercises do make a big difference , as does cooling those joints when hot by just laying them on a cool flat pillow and rolling the fingers , or using some heat to ease the wrist joints if cold gives no relief.
If not that GP discussion is important just to monitor what is happening and get extra help if it gets worse.
Thanks, Bleary, for your suggestions. I did cut back my exercise walking by half so maybe I'll go back to the old distance and see what happens. Who knows.
I did just read above that you are still keeping up a rather rapid walking pace while trying to cope with rebalancing the inflammation in your body at the beginning of your journey with PMR.
Rather than adding extra exercise but just slowing down your pace , you may be better off actually scaling back on what you are doing to give your body time to adjust and recover.
You are probably getting symptoms like this because you are still getting tired despite doing less . Don't increase your distance now but slow your pace.
PMR does mean lifestyle changes , and Pred is not a " cure" , it just helps you deal with the inflammation in your body while PMR is still active in it.
You can't just go back to " business as usual " when the pain subsides , as when you do that's when new flares of inflammation and pain kick in.
The way to help control the pain and side effects of PMR and Pred is to accept that you have a condition that needs you to make some lifestyle changes and lace yourself with a balance of rest and activity , a " New Normal" while PMR can still kick you in the pants by trying to live by the rules of the " Old Normal".
Coping with PMR is a combination of medication and self care .
It might be an idea to sit and work out what you weekly routine is , what things may be your triggers ( as in you get more pain or tiredness during or just after doing them ) , and how you can change your routine to add more balance to daily activities.
Work out your priorities , do what you want or need , not what you think you should and be willing to delegate certain physical or stressful chores or tasks to others when you are tired , and as part of your general plan to an easier recovery.
PMR takes Patience it is the key to coping with it . It doesn't go in weeks or months or even in the set number of years the Doctors will tell you , it goes in its own sweet time , your job is to find out the ways to use your body and mind to make it behave while it hangs around.
This will help alot from now and make it easier to cope with PMR and reduce flares or cope with tapering your medication successfully later on.
And too long on the tablet ! how do you use or hold your computer?
The added tingling and pain in the hands and wrists could be peripheral neuropathy brought on by the repetitive use of your hands on the computer made worse by the added tiredness from having a chronic pain condition.
Try making the list , slow down but keep active , find those triggers and it should help.
Yes, holding this tablet in the air with both hands can't be good!
No it definitely isnt. Even reading a light book hold it my hands is a recipe for painful hands.
I'll try resting it on a pillow or something to prop it up.
Are you in the UK? If so, Ikea sell some sort of tablet stands and they are wonderful. Can you check them out online - item number 003.263.34. They come in different colours (only have blue or white in at the moment), measure 25 x 25cm and cost £2.00. Absolutely brilliant and, No, I'm not on commission!!!
Wouldn't get a lot on a £2 item!!!
I have a small table next to the sofa, specifically bought for the small laptop I use. It would also work for tablet on its folding cover,
Maybe Amazon or EBay here in US.
Buys little beanbag for your lap. Really helps. X
Yes, something like that since I do all this reading in bed.
Hahaha...what's a lap
I bought a small bean bag type cushion intended for tablets. I use it all the time, and not being rigid, it can be used on different surfaces. I had aching wrist and thumb,and so found this on a site called ‘Live Better With’. It is mainly aimed at cancer patients, and they sell products to make life easier or them. I have bought other items too. This company is based in the UK, but others must do similar.
Thanks, I will look for something like that here.
My fingers are also very painful. My other pain has mostly subsided. I find it odd. I have found that rest seems to be a key. I have changed my diet completely and I am grateful to be off all meds!
I hope you find an answer. I swim 3 days a week in an attempt to keeping the PMR at bay!
You managed to get off pred quickly, then. So lucky. How are you feeling?
Good! I read Dr. Grundy’s Plant Paradox and I have tried to stick to his guidelines. It seems to be working. However, I know I am not ready to return to my intense life before PMR. I still allow myself enough rest & try to take it easy! I continue to work 40+ per week and I am grateful for that!
My inflammation markers are in the normal range, yet I don’t feel completely out of the woods!
I did an Epsom salt hot tub this morning and my fingers feel good! The hot tub with Epsom salt has done wonders for me.
Wishing you the best! Grace
Wow, a full time job! I guess when PMR hits us during our working years we are left with no choice but to carry on. But looking back, it would have been a monumental task for me. Small blessing that it struck me as a retiree.
Could be shoulder impingement combined with lingering pmr causing finger pain? I’ve learned you can’t fight pmr. If your body is not ready for intensity miss pmr will bite you the next day. You have to live with pmr not fight it. Unlike other injuries or sicknesses you can’t work thru pmr. It will let you know when you’re doing too much
Looks like we all have something in common. Read Jake’s questions and responses from earlier in the day
About a year ago, when I was down to 3mg dose, I started having hands/finger pain. Dr thought that it might be a start of RA and increased dose to 9mg... You might have had this problem all along, but it was covered by higher dose of pred. After taper down, it showed up.
Beside higher dose, I also did some stretching/flexibility exercise for hands. My main source of pain was in finger joints. I tried to stretch each joint by pulling finger (like stretching it to be longer) and then twisting each joint in both direction. This simple exercise relieved the pain from fingers immediately. It needs to be done several times a day, as needed.
Hey Nick, I hope you’re still cycling! I hope you didn’t end up with RA in the fingers! I suppose the A/I could result in another disease. I’ve not thought of that. Thanks for the heads up
Dr thought it was RA; At next appointment he said it was just synovitis .It went away with higher dose and stretches I explained. I am down to 2mg now and it did not come back. Of course I am biking, not as much as I would like to, it is rainy season in Japan :). So I swim now more often and bike less.
Thanks for the tip, Nick. Did you have RA?
no, it was synovitis and it is gone now
Good idea to try resting your book/ipad on something - I couldn't hold a book in the early days of PMR, I had other hand pain too then which did fade once I was on pred but now hand pain, especially thumb joints, is a sure sign of a flare. And it doesn't take a lot of change in what I do with my hands/arms for my wrists to ache.
Yes, I certainly changed up a few activities. I also dropped to 6 mg from 7 and since I can't cut Rayos.....Maybe I should have alternated days??
Try this approach with Rayos to slow down the reduction:
Do more with less pred - all too easy to overdo it and hurt as a result.
Ok, I copied the reducing plan. Thanks. A good plan.
Pain and swelling in my hands/fingers/wrists is one of the most predominant and painful symptoms of mine. It preceded my being diagnosed with PMR.
Can you actually see the swelling? I can't see any real difference but, oh, the aching and stiffness!
Not all the time but intermittently the swelling is quite obvious along with burning pain, numbness, stiffness and spasms. I have also had cervical spine surgery so it is thought to be cervical radiculopathy secondary to this but I now seriously question if it is actually part of the PMR.
What dose of pred now? RS3PE syndrome would do that but it should respond to moderate pred too.
Reducing from 13.5 to 13 at this time.
Could be - especially if you are one of the low absorber community! You could quite easily be getting the benefit of under 10mg pred already.
Third time trying to make this reduction !!
Give up for a couple of months!!! That's your body sending you a clear message: got there for now!! It doesn't mean you won't get lower. Just not yet ...
10 hours on a tablet would make my hands and fingers ache! I know, I've done it Reading my kindle also does it.
I bought a secondhand laptop and a friend gave me a lap stand for it, so much better on my hands
I do hand/arm/ shoulder exercises too. Especially before and after I do crochet or anything else which needs repetitive movements. I also limit how much I do as like any activity it can cause muscle stress/pain.
What kind of exercises help, Sandy?
Yes - I find life far more comfortable with a small laptop as well. I have a Chromebook at present because it does all I need now and is lighter - a real keyboard is a must for me whatever but I do miss the touch screen on the old one.
I went through a period of wrist pain and odd finger pains, sometimes just tingling but other times they went dead and then as circulation came back it felt like I had springs in my finger tips . My Rheumy told me some time ago that PMR doesn’t effect lower arms and hands (not sure I believe that) it didn’t stop me exercising and stopped after a few weeks. I put it down to a pred side effect.
"My Rheumy told me some time ago that PMR doesn’t effect lower arms and hands (not sure I believe that) "
I wouldn't if I were you! He is one a of a very very tiny minority who think that!
I go on enough PMR discussion sites to know he is incorrect about that, John. Just sayin, buddy.
Funny how every doctor has a slightly different idea of what PMR is and every patient has a slightly different experience of PMR. It’s a shape-shifter!
I too have had hand and wrist pain, but not until AFTER my taper ended. The tingling and numbness, and tender spots at elbows and wrists, were a totally new experience for me. I was thinking it was carpal tunnel or ulnar tunnel or both, but it gradually resolved itself with only NSAIDs, and now weak wrists and fingers are the remaining issue. Opening jars is a real trial, and when biking or canoeing, I have to change my grip constantly. But the next day hasn’t brought worse pain, so I soldier on.
I think I will ask for X-rays to see if it’s just osteoarthritis.
Good luck with your issues, jake!
Right. And that sort of random " one day this, one day that" is a giant stressor....Thanks, OG.
If your pain involves burning, tingling, and numbness, you might want to get a nerve conduction test to see if you’ve developed carpal tunnel syndrome. Apparently, approx 15% of those with PMR develop this secondary syndrome. I had it in both wrists and had the release surgery for both last year, 6 months apart. It’s simple, it’s quick, it does the job.
Btw, a sure sign is that the tingling in your hands and forearms wakes you up at night: feels like ‘pins and needles’.
Take good care, Jake!
had the same problem...swollen painful fingers, wrists...it went away after a month or so...frustrating I know..
For me it's pain but not swelling. Oh well...maybe this will pass on one day.
Welcome to my world! My hands and wrists are so stiff and sore in the mornings. My fingers are useless. Get better as the day goes on. I have reduced from 9mg to 8mg today as instructed by Reumy. Very nervous. What I do not understand is when I got ill last Aug. my blood counts were out in left field. They are now excellent and I still suffer from low grade pain and stiffness in the mornings. Beautiful day here in South Bruce Peninsula. Just heading for a bike ride.
The blood levels only rise when there is enough inflammation to trigger the liver to produce the proteins. The inflammatory substances are shed every morning about 4qm - and start to create inflammation which lasts until the pred takes effect so the protein production isn't triggered - and in some people doesn't happen while they are on any pred even though it isn't enough to manage the inflammation. No-one knows why - it is just so.
Enjoy your ride.
You are teetering on the edge of enough pred. It's sounds like it has been enough to deal with the inflammation but not much left over to deal with day to day Iife. If you are cycling your hands and legs are suffering due to overuse probably, and delayed onset muscle soreness for a while after.
Good question! Enjoy the velo ride.
Ye jakesearcher I know what you mean, when I started off it was my legs, neck, PMR at first then GCA,
but I never had a problem with my hands, sometimes my fingers are so painful, index finger sometimes I can't move it, as though it's locked, so frustrating, still have some pain and stiffness in my legs
I've started today to try cut out carbs, biscuits, etc, I hope I can stick with it,
Sometimes I forget what's it's like to be normal🙃
Yes, Eliz, I also think about when life was normal. But now I think if we can somehow....somehow...turn this ordeal into something positive.... and everyone will be different regarding that....well, maybe if we can do this....we win!
I still have issues with my knees and thumb joints over 5 years after 'recovery'. Think the PMR possibly prompted some sort of arthritic response in my body. Glucosamine helps a bit. Have recently started weight training and this has improved the knees, but has worsened one of my thumbs as holding the weights seems to be a problem! Am just trying to keep everything going and am trying to keep squeezing a ball in my hand to make the joint work. None of this seems to be related to diet as far as I can tell........
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