Following on from a previous post and comments regarding a clenched fist, my Mum is two years post diagnosis of vascular Corticobasal Syndrome and of late her hand has slowly started to clench into a fist too and sometimes is difficult to open.
Unfortunately, Mum doesn’t verbally communicate well however, until this latest problem I’ve never really felt that she has been in any pain but now feel that her non verbal reactions to trying to open up her hand (with massage) show this to be painful.
Is there anyone who is experiencing this themselves able to explain what the pain feels like, if it passes once the hand is opened slightly or if it’s continuous pain. Also, whether you find that massage eases the pain when trying to open up your hand.
I know the professionals can give their advice but I was just trying to get some feedback from someone who is actually experiencing this themselves to ensure I’m not missing a trick in understanding what Mum is actually feeling so i’m able to respond as best as I can.
Thanks 😊
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Milocorn1
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My Mum has Corticalbasal Degeneration and also clenches her fist. The muscles inside her hand are extremely tight and even with massage it’s difficult to straighten her hand out. Mum’s occupational therapist recommended a glove/hand brace to stop Mum’s nails digging into her hand which helps a little.
Thanks for your reply. Mum’s physio has provided some splints to use to try and encourage her to open it more often which she can do already with a massage, I just hate not being able to communicate better with her to fully understand her thoughts and feelings. Sorry your Mum’s going through this too. Much love xx
I totally understand, my Mum is non verbal and can only communicate by doing thumbs up & thumbs down with her left hand (which isn’t always reliable). It’s so upsetting, I really wish I knew what she was thinking so I could help,
I’m ever so sorry you & your Mum are going through this too.
My mum insisted until near the end that she wasn't in pain. But she said she didn’t feel pain when she got knocked and got a bruise or got sores either. I assumed that the brain couldnt make sense of the sensations. But she did say it was uncomfortable or the carers were rough sometimes when they were dressing her. Her whole left arm and hand were tightly clenched. Botox didn't help. She eventually agreed to regular dose of paracetamol which did seem to help. Later on the palliative care team added pain relief patches. If you don't have a palliative care team involved yet then I would recommend it.
Thanks for your reply. Mum also seems to not feel a pain sensation, hence my concern now with her hand - she’s also on a regular dose of paracetamol too. I’ll keep the patches in mind and have a conversation about palliative care support with Mum’s neuro nurse who’s due a visit soon. Much love xx
Mom has CBD and PSP, her left arm has been completely contracted against her chest for over two years now. She can't straighten it herself, we have PT/OT 4 times a week to massage her to keep that arm still somewhat moveable by her carers so we can keep her clean, etc. Botox works well for her. As for pain, she is unable to communicate any more, but she doesn't scream when she is in PT/OT. She doesn't like it when the carers take her shirts off.. but the PT people say what she is feeling is more like... if you were trying to do a split with your legs and were not particularly flexible.
Thanks for your reply. Sorry that your Mum has this with her arm that must hard going. The thought of that stretch when doing the splits … I’m glad she gets some comfort and flexibility from her PT/OT sessions and Botox. It’s so tricky when communicating is difficult. Sending you both much love xx
Plz check your doctor for Sinemet (Carpidopa/Levadopa) - that helps some patients with muscle stiffness
I have an anecdotal tip to offer - my dad would clinch his fists and one time I poured warm water on one of his fists and he opened it himself, plz try that - pour some warm water, not too hot but nice and comfortable and it may help
Hi, thanks for your reply. Mum’s on Sinemet already and there’s a possibility we could try an additional small dose of slow release but this is something I need to discuss further with the neuro nurse who’s suggested it as a possibility- she’s due out for a visit next week. I’m always a bit twitchy about messing with meds but we can at least discuss the pros & cons and go from there. I’ll definitely try the warm water trick, see if it helps thank you 😊 Much love xx
These are our experiences and information about that problem:
We combat stiffness in hands, arms and legs with gentle and persistent massages. We have read that the drug "Baclofen" can help in some cases. Ask Physician.
Isotonic drinks are interesting to help maintain blood electrolytes at the correct level. Lack of the proper level of electrolytes in the blood can cause spasms.
Sandir-2021 proposes: “To soak the hands in epsome salts and soap daily. To use a very thin cotton sack cloth to clean b/t the fingers and use a large qtip to clean inside the palm. After soaking I rinse then dry them really well using the dry end of the cloth.It is very important to dry really well.you can use a hair dryer if they can not be dried well with a cloth. To keep the fingernails clipped and filed very short to prevent them from digging in to her palms.”
Racewalk 2021 proposes: “Forcing fingers partly open, at shower passing my finger wet/soap inside the hand. Washing with shower wather, passing inside the hand some skin protective cream, drying with paper tissue and with hairdryier”
Martina_MP-2021 suggest: “Perhaps some hand sanitizers are just thin alcohol and an occasional little splash could get in there and also would evaporate”.
In the minute 15:00 until 15:40 of the video you can see how the maneuver to open a fist is performed.
The maneuver must be done carefully as it can be painful.
Sammy 90210 Indicates that “lukewarm (not hot) water over his hands helped him relax.”
Daddyt give us his experience: “I place my hand under warm running water and gently pry my fingers apart, straightening and massaging them as I go along. You can use a rolled-up wash cloth or even a tennis ball to hold if the clenching becomes more persistent”
Hi. Thanks for your reply and for the summary of suggestions much appreciated- massages and warm water seem to help and I’ve started giving Mum some Lucozade to see if this helps too. Much love xx
I have occasionally experienced a clenched fist as recently as last week. To remedy this, I first hold my hand on warm running water. As I do this, I gently pry each finger, while stretching and gently massaging it away from the palm of my hand. I only experience pain and discomfort while I do this. But because I work my hand almost immediately after the clenching, I think I minimize any further pain. Be sure to keep her fingernails short and trimmed to avoid breaking the skin. If it becomes a regular issue, you might consider a splint. Some caregivers have used a rolled washcloth or even a tennis ball or similar item. Botox may work, but as you know, it might not be beneficial. I hope you find something to ease her discomfort - Tim
Thanks for replying and sharing how you use the warm water to help with opening your hand and especially how you minimise the pain. I struggle with the lack of communication and hate the thought of her being in pain and me not knowing to what extent that pain is. Her nails grow fast so I definitely need to keep on top of regular trimming. The physio has also given us a splint to try out as well so I’m hoping that may help too. Sorry that you’re having to experience this too, much love xx
I applaud you looking beyond the professionals to try to help your mum.
My mum screams a lot these days (also doesn't really communicate verbally) and I gather it's the tightness in the hand/arm, but also you can see the tension. Feeling the whole area gently it starts all the way from her shoulder, and her middle finger is straight rather than a fist. If anything that middle finger is seeming to bend in the opposite direction.
Paracetamol helps as does making sure the nursing home staff aren't late with her Sinemet doses. Her neurologist was the one that revised the schedule for her tablets.
I tried gentle massage but that seems to make it worse. The only thing I did find was that as she relaxes / her anxiety reduces the muscle tension often lifts too. Sometimes gently placing my hand in hers and letting her try to hold my hand at her own pace can work (both in reducing the tension but maybe also having a focus for the hand, perhaps it provides biofeedback, who knows?)
Hi. Thanks for your reply. Sorry to hear that your Mum’s going through this too, it’s so awful and especially when there’s a lack of communication to help with making informed decisions. You’re right about the anxiety, if Mum’s stressed her hand will clench so tight. Any heightened anxiety has a knock on effect on everything, sleeping, eating, transfers, toileting etc. We try to keep to her daily routine on track and like you ensure meds are timely and that she has the same familiar faces around to support her - this definitely helps a lot. Sending much love to you and your Mum xx
I imagine the communication issue is quite distressing for you all. We used a communication board with my mum when she became non verbal. We did have an electronic one but this was too hard to use due to loss of dexterity but we were able to use a paper board where it was set out as link below to spell things out.
Mum had no mobility except in her big toe. We would ask is it in first row? Mum would raise her toe to signal yes, If yes then go along the first row until you get to the right letter etc. Although slow, it worked great and meant we were able to maintain communication.
Hi thanks for your reply and the link. I’m so glad that you found a way to continue communicating with your Mum it sounds like a good technique too. I really do struggle with the lack of communication it just makes Mum that much more vulnerable and me so protective of her. Much love xx
Sorry to read that your Mum’s in so much pain with her arm/hand I hope she can find something to help relieve the pain.
Mum’s not on any further meds, she’s still just taking daily paracetamol so has some pain relief in place, albeit nothing too strong at this point in time.
The only things I’ve noticed that seem to have helped is trying to keep Mum’s hands warm and also that she seems a lot more comfortable opening her fisted hand when there are very slow and gentle supported movements - you can actually feel her muscles slowly relax. This approach with a little reassurance seems to generally help to keep her anxiety in check too as otherwise this can bring on a much tighter grip.
I think that keeping up with daily hand massages and gentle exercises/massages with her arms/legs (in her chair/ lying in bed) have definitely helped in managing any pain/stiffness levels.
Also, when she’s in her chair I try to place her hand as open as possible resting on the arm of the chair just to avoid it becoming fully fisted and when she’s in bed she’ll have a stuffed/rolled soft sock doubled over (for extra width) in her palm and under her fingers to try and keep her hand as open as possible whilst she’s resting to try and avoid her just having a tight fisted grip of it.
As always, I’m mindful that Mum’s lack of verbal/non verbal cues always leave me second guessing her thoughts and feelings so the above is just my take on things.
Sorry, I guess I haven’t really helped with your Mum’s situation but we do have a neurology appointment in early Nov, so I’ll be asking the question again in case there’s any new handy hints/suggestions from the neurologist and if so, I’ll share on this thread.
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