PSP Spasms

[Prius1]

my wife suffers from this awful disease and gets really painful spasms and pain in her legs, usually the left leg and then sometimes starts in the right leg co caradopa and baclofen usually stop this after about 30 minutes but now am having to use Oramorph to ease the pain, was wondering if any one as experienced this

[carehope]

Dear Prius1, Baclofen can be helpful for some but make the spasms worse for other patients . It sounds as if your wife's Rx of Baclofen needs to be reassessed by an experienced neurologist. Finding meds, supplements, etc...that may be helpful is a challenge that I wish we didn't have. but it's a biggie with these unpredictable unknowns !

This may have no bearing on your wife's situation but I know that Klonopin is also used for symptoms of dystonia (as a muscle relaxant). I'm sure that other people on the site will have some valuable input.

Symptoms are so individualized that finding an effective treatment is a trial and error approach. Do research Baclofen and along with other possibilities familiarize yourself with the side effects and adverse effects. You're not "playing doctor" ; you're educating yourself and sometimes you'll find meaningful info that may make a positive difference for your wife. 😊 As her advocate, it's perfectly acceptable and actually important for you to learn particulars about interventions ; speak up, make suggestions, etc... A good doctor appreciates input from their patients/family.

Wishing you good luck and success along the way. Frequently the caregiver/patient can be more informed than the "healthcare professionals" regarding uncommon diagnoses !

Take care and I hope that your wife will be able to feel much more comfortable ASAP.

P.S. : I believe that CBD oil may also be worth learning about. There's info on the site regarding its use.

Warm regards,

Elise

[Bergenser]

My husband also gets such painful cramps/spasms in his legs - sometimes just the lower leg and foot but sometimes the knee and thigh are also rigid or jerking. I have observed this getting worse approximately 20 minutes after his Co-careldopa - then easing off after 30-40 minutes. So I suspect that medication may contribute to the problem.

Sitting or lying down in the same position for too long also makes it worse. It seems to happen mostly when he is resting or eyes closed, not so much during activities where he is concentrating on something. Even if there can be multiple "triggers" I'm sure the PSP is the main cause.

What we have found helpful is

* magnesium - as a supplement, and as a spray that can be massaged into the area

* Isotonic drinks (sugar free)

* A gentle but thorough massage in the evening can ease the pain, rigidity and spasms through the evening and night, and he wakes up less stiff and less prone to have quite as strong spasms even if he gets twitches.

* The neuro-physio does a lot of stretches with him (and has been teaching the paid carer to do some of these) and this seems to help for a few days each time.

* When the pain lingers we use ice packs or cold spray - have also tried hot patches but he doesn't respond as well to heat.

I have not yet tried "Tens" drug free pain relief on my husband, but that is on my list of things to try.

Strangely my husband doesn't complain much about the pain, and will usually decline painkillers when offered, so we have not (yet) gone the drug route.

I wish you and your wife all the best.🌻🫂

[Sun-flowerwearer]

Hi Prius

Similar medication for my husband. Started getting very painful spasms /pain in upper left thigh, upper left arm, hands.

Started with baclopen, a week ago started oromorph and 20mg morphine patches that are slow release .. this is currently working

My husband is confined to bed now as very weak.

[Milocorn1]

Hi.

My mum has been diagnosed with CBD and has regular doses of Cocareldopa, and Diazepam to help with muscle stiffness and spasms. She also takes regular doses of Paracetamol however, this originally was to manage pain from a long term bladder condition she has suffered with pre CBD diagnosis but may well help with any pain relief required from stiffness/spasms. She has also tried Baclofen and Gabapentin a while ago but didn’t tolerate either well at all.

She now unfortunately doesn’t communicate enough for me to fully understand her thoughts and feelings. However, to help relieve stiffness/spasms in her arms and legs I use a massager which definitely seems to help a lot. For example, it will help fully relax and straighten a stiff bent knee, and in general seems to relax her whole body. I use it both whilst she’s sat in her chair and when she’s lying in her bed. It also seems to help with sleep too.

I also do some gentle stretches with Mum’s arms/legs that the neuro physio has shown me.

Mum also has curled toes and seems to enjoy having her feet soaked in warm water with Epsom salts - so I’m assuming this helps with pain relief/relaxation too.

It may be worth mentioning that Mum’s neuro physio explained everything is so person specific as for example, he has another client with similar presentation to Mum who doesn’t respond well to massage at all.

I hope you can find some solutions for pain relief/relaxation that help your wife. Sending love and hugs to you both x

[Runner333 in reply to Milocorn1]

What type of massager do you use? Thank you.

[Milocorn1 in reply to Runner333]

It’s a Dr Graeme General Purpose Massager - sourced via Mum’s physio but they’re online to purchase too.

drgraeme.com/products/gener...

[Runner333 in reply to Milocorn1]

Thank you. It looks great!

[LuisRodicioRodicio]

Hi Prius 1!

Agree with Bergenser and Milocorn1. Excelent tracks!!

Our experience and information about spams and stiffness is this:

We combat stiffness in hands, arms and legs with gentle and persistent massages.

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.

On case of hand spams or stifness:

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.

Sammy 90210 Indicates that “lukewarm (not hot) water over his hands helped him relax.”

Daddyt give us his experience: “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”.

Hoping to be useful.

Hug and luck.

Luis