PAINFUL MUSCLE CONSTRICTION

[Perrywrinkle]

I'm new to what appears to be a very friendly and helpful site! I'm caregiver for my husband who was diagnosed with CBD in 2018. We're both 75 and live in the U.S. He has degenerated to the point of being dependent on me for all aspects of daily living. He can't walk and has no control over his right hand and arm, which become painfully rigid. The only treatment that temporarily helps is injections of botox. Those only ease the pain for a short time and I'm wondering if others suffer from this and know of any helpful remedies. Stretching his arm up and back, moving it in circles or back and forth helps a little. I don't know anyone else who cares for someone with CBD and am excited to join your group!

[sammy90210]

Sorry about this - the medicine that helped a lot for my dad was Sinemet (carpidopa levadopa) - it doesn't help everyone but plz ask his doctor - i also remember my dad would close his hands and wouldn't open them- then one day i poured luke warm water over his hands and it seemed to send a signal or maybe it helped him ease the pain - best wishes

[Perrywrinkle in reply to sammy90210]

Thank you so much for your reply. My husband does take Sinemet to help control tremors but it doesn't help the muscle tightening. I'll try the warm water. Again, thank you!

[Cianodude in reply to Perrywrinkle]

My mum has been put on baclofen twice a day and it seems to have relxed her claw like hands which are totally restricted...but hasnt helped the pain

[maxandpoppy]

Both my husband's hands are very constricted. He holds his arms bent permanently up at the elbow and fingers bent inwards. The physio has made a splint for the worse one to support it and open up the fingers a little. He wears that an hour a day. He holds rolled up face cloths in each hand. He seems happy with those and they stop his finger nails digging into his palms. Hand hygiene and skin integrity of course are very important to watch out for. Hope this helps a little

[Perrywrinkle in reply to maxandpoppy]

I'm so sorry your husband has this issue in both hands. Thank you for your suggestions. He does have a splint his therapist made him a couple of years ago, but he gave up on it. Now that the stiffness is worse maybe I can convince him to try again, as well as rolled up washcloths. Best wishes to you!

[LuisRodicioRodicio]

Hi Perrywrikle!

These are ou experiences and informataions about stifness:

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”.

Fist opening maneuver:

youtube.com/watch?v=a2MnoaC...(Not working as expected?)

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.

I am sending you our experiences on different symtoms by internal chat of this web.

Hug and luck.

Luis

[Perrywrinkle in reply to LuisRodicioRodicio]

Lewis, thanks so much for all your suggestions. I watched the video and found it very helpful. That maneuver for the clenched hand doesn't work for my husband. He's found that by unlocking his thumb until it relaxes then his pointer finger unfurls and when it does the remaining fingers also relax. I really appreciate all that you suggested. This is a really wonderful support group!!!

[AJK2001]

Glad you have found us but sorry you needed to. Hope you find the group useful and supportive - I have.

[Perrywrinkle in reply to AJK2001]

Yes! I'm so relieved to be able to communicate with others who understand what we're going through and have good suggestions! Thank you

[daddyt]

Sorry that you're here, but now that you are, you will find an abundance of support and useful help along the journey. All the above suggestions, including what you're doing now, will be helpful. Try to see what works best for your husband. Muscle contractures and stiffness are dystonic and will not go away. The best you can and your husband for is management.

Tim

[Perrywrinkle in reply to daddyt]

Thank you Tim. I'm thankful to have connected with this group.

[Sebuly14]

Initially, my husband took Baclofen and it worked well. Unfortunately he had a bad reaction to it and can no longer takeout. Recently, the neurologist asked him to try a brace again. We saw the occupational therapist and she recommended a lighter brace that isn’t as restrictive as his old brace. OT was very successful in manipulating his hand and arm. We got the new brace last week and he has been able to wear it for 1 hour several times a day. We both see a difference in his hand and fingers. He gets a massage of his arm and hand 5 days a week. We are scheduled for a Botox evaluation this Tuesday and have high hopes that it will be beneficial. If possible, I suggest having the hand and arm evaluated by an occupational therapist and getting some recommendations for treatment.

[Perrywrinkle in reply to Sebuly14]

Thanks so much. I really hope the botox will help your husband. We do have a wonderful O.T. and when she manipulates his arm and hand it seems better for a day or two. Like you, I will try to find a massage therapist to come 5 days a week. I have limitations because of arthritic fingers and wrists, but I can manage to stretch his arm a few times a day.

[am2015]

We didn't use Botox but did use beclofen to help reduce stiffness. Unfortunately as the symptoms progress stiffness becomes a very real problem. We would do regular massage to help reduce the stiffness and as others have suggested place a small handkerchief etc to stop the nails digging in and cleaning the hands. Sorry, I can't be of more help.

[Perrywrinkle in reply to am2015]

You do help .... you and all the others who replied and understand. Knowing I can ask for suggestions is such a gift.

[Espink50]

Esther has been dealing with same. Contractures are inevitable. Do what helps for the present but nothing you do sadly will stop the stiffness. Daily tylonol might help with pain. Glad to hear botox helps some. Tried with Esther but no success except the $6k for the doctor. Good luck. Contact me for any questions.

[Perrywrinkle in reply to Espink50]

Thank you for your reply and I'm sorry for the money it cost for Botox that didn't work! My husband is a veteran who was exposed to Agent Orange while serving in Viet Nam. We are fortunate that the V.A. pays for all his medical needs. How long has Esther been dealing with cbd?

[Espink50 in reply to Perrywrinkle]

She started showing signs in summer 2015.

[MRSYafffle]

I'm sorry to hear of your current issues with your husband. Not sure about medication but my mum did find acupuncture great for pain and stiffness. Take care xx

[Mariawatters]

Hi

I have CBD I’m 59 and I was diagnosed 6 years ago . I’m on sinemet, clozapine and pregabalin for nerve pain . I think they help ❤️

[Perrywrinkle in reply to Mariawatters]

Hello Mariawatters! Thank you for your reply. My husband also takes Sinema and Clonazepam but we haven't heard of Pregabalin. I'm so sorry for your diagnosis. Since Tom is older (75) and his symptoms began in 2017, it might be interesting to compare the rate of degeneration: His first signs were walking with a shuffle and holding his left arm up, bent at the elbow and his hand like a traffic cop. Now he can no longer walk, his speech is slow, and he is dependent on me for all aspects of daily living. He's a veteran and was exposed to Agent Orange. The V.A. is very supportive, providing us with a hospital bed (so far he can't sleep in it. He's slept in his recliner since 2017), front door ramp, motorized chair and many other things. To us, in our mid 70's, 59 is still young and we're so sorry and are hopeful that your CBD is a slower degeneratiom. It's nice to "meet" you!