Muscle cramping/pain w/ PSP

[PSPfight22]

My sis in law has PSP. What success has anyone had (what helped) with muscle cramps in the legs? She is taking Baclofen & now the dr has added Norco for the pain. She has mostly been in a wheelchair for 5 months, but moved into a care facility & has just started physical therapy. She has also developed anxiety & has panic attacks. Anyone have suggestions for that? Thanks in advance!

[Kayelless]

I’m a patient here.

I’ve had this problem. I’m not in a nursing home where strong drugs are too often prescribed for staff convenience. I live on my own but that will change soon to living with my daughter.

My thoughts if it were me: I understand this exact pain, but norco is an opioid. It can constipate, which means another drug added to solve for that. And maybe another to offset the side effects of the anti-constipation med.

I’ve used norco which makes me feel somewhat dazed most of the time and that could increase falls and other accidents even with physical therapy, not to mention quality of life. Imagine being mildly drunk all the time but without any of the fun of drinking. And over time she’ll need larger doses.

I’m not in the medical field —- but I’ve found tramadol (a mild opiate but without the drunk effects) or tuinol will cut the pain but leave my mind intact. I use over-the-counter Aleve with it, although aleve has its own risks. To me, Aleve is way less risky than norco.

Kyle

[LuisRodicioRodicio]

Hi PSPfight22!

These are our experiences:

Muscle cramps, spasms and stiffness:

We not detected major episodes of muscle cramps or spams.

To minimize or avoid them in the daily diet we include in the breakfast a quantity of fresh cheese combining with a little citrus fruits (orange, lemon, strawberries, etc.) and in the meals egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the generation of vitamin D.

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.

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.

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.”

Hoping to be useful.

Hug, luck and courage.

Luis

[PSPfight22 in reply to LuisRodicioRodicio]

very useful Luis! Many thanks.

[timbowPSP]

Sounds like her body is short of Magnesium, as a salt - for relaxing the muscles. I am 80 with PSP diagnosis 4 yrs ago, and steer clear of all drugs cos of side effects. For Cramp, mainly at night, I grab the Magnesium spray for on the spot, rub or wait till spasm gone (or if I'm groaning loud my pRTNER COMES IN TO HELP!), then take one or two Mag Threonate caps. And wake up later. Not advising you,...... just saying. Best of luck and good wishes

[PSPfight22 in reply to timbowPSP]

This sounds promising! Thnx!

[bazooka111]

We had success with Baclofen and Pramaxieople -- Kim

[PSPfight22 in reply to bazooka111]

So appreciate Kim. All the best.

[Dickwin]

When my wife experiences muscle cramps and muscle tightness, which happens 2 to 4 times a week, she smokes a small amount of marijuana -- 1 or 2 puffs. This usually relaxes her and helps her sleep. BTW, she has PSP for over 10 years now (diagnosed 6 years ago).

[Tindb]

My wife has CBD for 5 years now and cannot move intentionally. For her muscles stiffness she gets 3x per week fysiotherapy. The therapist also trains the muscles to maintain condition. Being unable to use her muscles she experiences pain. This is a response of the nerval system. Daily I make slight multiple movements on the knee, feet, elbow and hand joints. This tends to help in reducing the pain experience.