Mom’s legs stiff, bent and very sore

AdT

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Mom was diagnosed with MND (primary lateral sclerosis type with progressive spastic quadriparesis and pseudobulbar palsy) about 2 and a half years ago. She is now in a rest home (since the beginning of the year), she is in an electric wheelchair and needs help with all personal care, she can communicate by writing (not keen on technology/ iPad apps). We thought she was adjusting ok to the rest home but I think the lockdown had a negative effect. Communicating with her was harder (Skype) and I think they had more limited resources, less staff and physio didn’t see her for a while.

She was having a lot of leg spasms at night and had trouble sleeping some nights. She was on Baclofen 10mg x twice a day. A week ago the spasms became really painful, she was in pain the whole night and didn’t sleep at all. I was really angry with the rest home, that first night they apparently couldn’t give her anything stronger for the pain then what was charted by the doctor, which was paracetamol! We also found out the doctor is not on call at night and even the next night when she was in agony again, they had charted codeine for her which wasn’t enough, at 5am they called an ambulance because mom insisted, since they couldn’t give her anything to help. To make a long story short, eventually we got hospice involved and their GP was much more helpful and responsive, she was given morphine and midazolam and a higher dose of Baclofen (45mg per day). She still gets some sharp pain when she has the leg spasms but it’s become more bearable with all the medications.

The problem remains that her legs are bent at 90 degrees (sometimes worse) at the knees and she can’t staighten them. The rest home physio finally came to see her a week later and massaged her legs which seemed to help a bit, but she didn’t attempt to try to straighten them as she was still in pain. I have arranged for another physio (private) to see her next week, I think they need to do something to relax and straighten her legs. I feel like it’s become a vicious cycle, her legs in this position, especially at night, it probably adds to the tension and spasms and cramps. I tried myself very gently to massage and straighten the leg very very slowly, one at a time, but only managed about 5 degrees or so, and at the next spasm they bunch up again.

Has anyone had this and what was the most helpful? Is this a normal thing that can happen as the disease progresses, her legs remaining bent like that?

Any thoughts or feedback appreciated, I hope everyone is coping ok with this terrible disease in the middle of a worldwide pandemic.
 

affected

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I'm so sorry your mum has so much pain.
When there is a lot of UMN involvement causing a lot of spasticity with the atrophy, unfortunately joints do freeze up. We can use heat, massage, ROM and medications to help, to slow this and to ease pain.
Sadly however, for some PALS frozen joints will still result.
If you can get a physio who really understands how to deal with ALS and work on relieving pain she may get a lot of help.

My husband had a lot of should issues and as the joints froze, despite all the strategies we used, the pain was cruel.

Hopefully hospice will be able to help a lot in keeping her comfortable.

How is her breathing?
 

lgelb

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I'm sorry to hear about your mom. What is her sleep setup in terms of bed, mattress, overlay?

Some people do well with lower doses of baclofen and adding tizanidine. I realize the problem is not cramp per se, but to loosen her muscles, if her heart is sound, quinine water may be an option. Some try pickle juice or mustard, which can trick the muscles in relaxing. Weirdly, some do better with ice and others with heat (but you don't want to mix them too closely as that can cause tissue damage). I agree that finding a PT who knows their stuff is worth the time. If her care home has a sauna, spa or sunroom, that might help.

Also, not sure what the weather is where she is, but a low-voltage heating pad under the sheet and/or overlay at night, can help the muscles relax as well.

Best,
Laurie
 

Kristina1

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I have very similar problems. The pain is excruciating when my legs lock up. Heat, massage, and ROM help, but they need to be done consistently- several times per day every day. Baclofen didn't help much until we went up to 20mg 3x/day. That dose magically provided a lot of help, so my doctor took me up to 30/20/30 (80mg/day). I also take clonazepam and magnesium nightly, which both have an additional small help relaxing my muscles. I am on oxycodone for pain.

I'm so sorry your mother is going through this. Advocate hard for her. It sounds like she needs a lot more targeted care to decrease her pain.
 

lgelb

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Just a reminder that if your mom is already on morphine and midazolam, the latter is in the same class (benzodiazepines) as clonazepam so you don't want to use both. But switching between the two is always worth a try.

It might also be worth trying something like a Vaso-Wrap (which is available on line) on each of her legs, varying the position, not as an intervention like massage but because sometimes continuous gentle pressure and adding warmth in a particular area can quiet nerves even in different locations.
 

KimT

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I found myself with a right leg that would not straighten out and was extremely painful. I had to up my dose of magnesium. If your Mom is already on a Benzo, they might try switching to Valium because that particular benzo is used for muscle relaxation.

I agree with Kristina. I went to PT for six weeks and between them, my friend, and I all working on it every day, several times a day, it helped. Heat also helped me but cold helps other areas.
 

AdT

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Thank you very much, I am touched by all the replies.

Affected, i’m really sorry your husband went through this as well. We will try the new physio, she has experience with MND. Her breathing is ok for now. Thank you.

Laurie, our neurologist said Baclofen was the only thing they could give her for the spasticity but I will go back and ask again. I also read online that it can take up to a few weeks for Baclofen to work for some people.
Mattress I believe is a high grade pressure mattress, she had the air mattress early on and she didn’t like it. We will look into heated pad. Thank you for all your suggestions.

Kristina, i’m so sorry you are also experiencing this. I’m glad Baclofen helped in the end. Is the effect noticeable as you increase the dose, or does it take a while to really feel it’s effect? Wondering if we have to wait a while before asking to increase the dose further. In the meantime, it sounds like massage, heat, ROM is very important, we’ll push for that from rest home staff and private physio, and we can also do it when we come to visit. Thank you, Kristina, it helps a lot to know what worked for you.

KimT, it sounds like it took a while of consistent work for it to help, but it’s encouraging to have a similar answer again. Hope the new physio helps today with a clear plan forward. I’m sorry you are going through this too and thank you for your advice.

The other (huge) issue has been that my mom wasn’t believed that the pain is really bad, apparently they were looking at her heart rate and whatever else they measured and it didn’t seem to indicate high pain. I won’t go into too much detail as i’m still dealing with this with the rest home. I was beyond appalled, it’s been an ongoing nightmare.
 

Clearwater AL

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AdT. I seldom chime in on these topics but.... I was familiar with Baclofen.

If someone is on a high dosage regiment say, 30mgs three times a day,
as I am familiar with, a high dose regiment is nothing to mess up with.
It is critical it is taken in 8 hour intervals and not miss a dose.

It is also very important not to just stop taking Baclofen... sudden
withdrawal can cause convulsions. Make sure refills are ready.

And.... some doctors want to do 30mgs in the morning, 20mgs
midday and 30 at night. That's nonsense.... it's either 20 - 20 - 20
or 30 - 30 -30 mgs.

There may come a time when max dosage doesn't get it and then a
Baclofen pump may be considered.

Again, high dosage Bacolfen needs to be taken in timed intervals
even if some kind of reminder timer is needed.

Just my thoughts.... some may disagree.

PS. Just to add to my comments above.... to work effectively.
 
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Kristina1

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AdT, I was on 10mg 3x/day of Baclofen for 3 years and it only helped a little, with no noticeable difference when we went to 15mg 3x/day or when we increased to 15/15/20. It wasn't until I hit 20mg 3x day that all of a sudden it started helping a LOT more. Just my experience.

The previous poster is correct about making sure you never stop baclofen cold turkey, she would need to wean off it gradually. In the past I have accidentally missed a dose with no ill effects, and I take my morning dose 10 hours after my bedtime dose and always have with no issues. So in my experience there is some leeway there, but perhaps others respond differently.
 

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I have learned from other CALS that neurologists sometimes might not know what to do about the intense pain that some PALS experience. One PALS got more help since he is on hospice and the other one went to a pain clinic to get help. Much luck on this journey. It should not be harder than it already is.
 

Clearwater AL

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If I may add this concerning Baclofen. If one is on the high dosage timely regiment
if you miss a dosage... within hours you'll sense you did.

*If it has been properly prescribed for your situation concerning MND.

Baclofen also somewhat suppresses fasciculation.
 

AdT

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Thank you Clearwater. I think the neurologist and doctors know about increasing the Baclofen slowly and the regular intervals. She also has an additional 5mg dose as needed.

Kristina, thanks again. We are hoping the dose can be reviewed again soon and increased.

Thanks ReginaS. You’re right, it’s already such a difficult journey. Hospice has been very helpful and we’ll keep them involved. I think the neurologist doesn’t want to get involved much from now on.

We had a physio see her yesterday and she stretched her legs a bit and looked at sleeping position as well, I think she was a lot of help. Even though the results are not immediate, at least now we have a plan. Let’s hope it works.
 

AdT

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Mom’s pain has been more manageable lately but she still has some bad episodes of pain. We have a private physio do exercises and stretches with her once a week, also a massage therapist once a week. The carers are meant to do ROM exercises for her legs daily but I don’t think it happens regularly and properly, the staff at the rest home are often very busy.

We also asked about her sleeping position, as she mostly sleeps on her side and her legs bunch up. The physio showed the carers a position on her back with pillows under her knees, and pillow between her legs, and she had slowly stretched her legs out in this position so they weren’t bent so much at the knees. The problem is that even in this position, at the next leg spasm, her legs bunch up again.

Does anyone have ideas about sleeping positions which could help to keep the legs more stretched out? The physio was going to ask around about possible sleeping aids that could help. One of the things she showed us was a “t roll” which is a T shaped pillow but I think that helps more with keeping some space between her legs, not so much with her bent knees.

Thank you again.
 

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For my husband, he wore Prevalon pressure boots that we connected with a piece of fabric and one foot that tended to flop had an extra plastic block attached under the forefoot part of the boot . We also wrapped a Royal foam tape with Velcro around his lower thighs (both with the same tape), cushioned with extra foam blocks on each hip. For someone who sleeps hot, this wouldn't work, but he was usually cold. These kept his legs together but separate. In his case, it was for hip pain to keep aligned.

We also positioned the hospital bed so his knees were supported with the legs somewhat bent. In your mom's case, that's an important step, to find an angle that doesn't trigger the spasms as much, because the muscles can relax more.

She would need to learn to tolerate a position where she stayed on her back.
 

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My husband was at home, so it was easier to manage what care he did and did not receive, and daily ROM was an absolute must. Myself or his other caregivers did it most days, and we had a PT come in three times a week. Two different companies tried to just train us and leave, but I raised a stink. Continuing PT is necessary for PALS--not because we think they are going to recover, but in order to prevent the pain of contracture. One company discharged him and sent a note to the VA saying he'd met his goal. My response--his goal would only have been meet after he was gone and had passed without the pain of contracture. Well, I might have phrased it a bit more harshly, but they got the point and found another company.
 
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