PSP and painful legs at night

[Antscerqua50]

My mum has PSP and is up 6-7 times during the night going to the toilet . She is complaining of sore legs and says it is painful with covers on her legs . Does anyone know if this is common or can advise of anything that can help . She is taking regular paracetamol but not helping . She is exhausted as not sleeping more than an hour or two at night .

[Hungryhippos]

This is happening to my father as well. Mostly at the knees. He often lays at night bending his legs and holding his knee. Massaging seems to help. I thought maybe it was because of inactivity. His neurologist didn’t see a connection with psp itself.

[Walking18 in reply to Hungryhippos]

This is my mum too - she constantly complains of knee pain and says it goes from her knee to her foot. She keeps asking for it to be “chopped off “ it’s causing her that much distress. She was only taking paracetamol but after managing to speak to her GP he agreed to trial Gabapentin although I have to say it doesn’t seem to be having much of an affect

[Blueclouds07]

Hello Antscerwua50

My mom has also PSP and got the same symptoms and what we used to do is just massage and stretching exercises whatever she can tolerate this will help her. I know what they are suffering is beyond our expectations but we are all trying to help them. Take care .

[messier]

Is she sleeping in a normal bed or a hospital bed? Mum is now in a nursing home and has a hospital bed and seems to find that more comfortable as long as the carers put her in the right place with the head and legs raised just the right amount for her.Mum had lots of problems with needing the toilet at night sometimes 30mins to 1 hr apart, with longest gap perhaps 3 hrs. That became too much of a fall risk, and for her even pads were not sufficient. I discovered that the problem is that in some patients the day/night cycle of urine production is reversed so more is produced at night instead of day. She now uses a catheter, which she wasn't keen on obviously but on balance is better.

[LuisRodicioRodicio]

Hi Antscerqua50!

During the 8.5 years that PSP accompanied us, we have not detected major episodes of tooth decay, muscle cramps, pain or spams. Applying these protocols may have contributed to it:

1) Diet. 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 ("Aquarius" orange or lemon or similar kind of drins without gas). Lack of the proper level of electrolytes in the blood can cause spasms.

2) Massages. We also combat stiffness in hands, arms and legs with gentle and persistent massages every day. (Using an olive oil-based moisturizer is a plus). We have read that the drug "Baclofen" can help in some cases. Ask Physician.

3) Exercise. If a patient is diagnosed or suspected of being affected by a neurological disease (PD, PSP-RS, PSP-CBD, PSP-P etc.), then it is recommended to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. The idea is that the more one uses their muscles the longer they are able to use them. PSP usually affects more on one side of the body than on the other. Logically the disease will progress and the type of gymnastic exercises should adapt and necessarily reduce its intensity.

One easy activity is to go to the pool and walk back and forth across the shallow end of the pool - forwards, backwards, sideways. It really help for a while. It won't work forever, but it'll work for a while. To have one to one hydrotherapy with a neuro-physiotherapist may be a good idea.

4) Medicines. First rule out if there is an infection or a problem in the urinary tract that may be causing such frequent visits to the toilet.

To control of palliative medication against insomnia and anxiety. In our case we used one pill of "Lorazepan-1mg" one hour before dinner. Of course the drugs were prescribed by a physician. After around 6 years with this medication no appreciable side effects on our case.

I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Hoping to be useful.

Hug and luck.

Luis

[Dickwin]

Antscerqua, my wife, who has displayed various symptoms of PSP for about 8 years and was diagnosed with PSP for 4.5 years now, suffers from muscle stiffness and spasms: Particularly in her legs. She takes Gabapentin. This drug has multiple uses and helps with sleep, pain caused by neuralgia, restless leg syndrome and muscle spasms. She has many of the same symptoms your husband has. Gabapentin is primarily an anticonvulsive medication. Its original use was as a muscle relaxer and anti-spasmodic medication, but later, it was discovered the potential of the medication as anticonvulsive medication and as an adjunct to stronger anticonvulsants. She feels that it helps her considerably, especially with sleep, spasms and leg pain. You might ask your husbands GP or Neuro about it.

Good luck

[mjtogether]

My husband takes Baclofen and a low dose lorazepam at night. It may also be time for a nighttime Depend with the addition of a quilted waterproof pad underneath her. Try it and see how it works. You will definitely learn as you go!

[daddyt]

My legs have been greatest nemesis on my PSP journey. Stiffness, heaviness, neuralgia, contractures, restless leg... you name it, I have it. Regular exercise - stretching, recumbent bike, heat, massage besides Balcofen, Clonazepam and Tylenol help me the most. Remember, PSP will affect each patient differently. And to the doctor who suggested the knee /other leg pain is not disease related, he or she is probably not a movement disorders specialist (MDS) and has never walked, wobbled, stood or laid in our legs.

Tim