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ShiftKicker

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Joined
Mar 16, 2015
Messages
8,345
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I have recently been unable to exercise and stretch easily on my own. I began to get puffy legs and ankles, so I started seeing a massage therapist once weekly about 6 weeks ago, to great effect. The therapist is VERY gentle and only does passive rom and gentle manipulation to help increase circulation and my legs have definitely become less swollen and bruised looking. However, two sessions ago, I became very sore for three days afterwards. Same with my session this past Monday. My muscles ache like I've worked out heavily, and have become very reactive- lots of pops and twitches and really severe charlie horses. Am I damaging my muscles or should I just push through? There's benefit to my leg circulation for sure. Has anyone else with UMN issues encountered anything similar?

Many thanks

~ Fiona
 
Fiona, I have finally resigned myself to the fact that excessive exercise is not good for me anymore. My spasticity is to the point where (I think) stretching and non-resistance exercises does me the most good. I've been having my PT teach me leg stretching that I can do on my own. We also are trying to improve my balance. The leg "ache" you speak of is killer for me, especially at night, along with foot and leg cramps. I have no muscle atrophy (yet), but I have increased muscle tone. I've always had kinda skinny legs, but now they look like the Incredible Hulk's, but very weak. The clonus gets worse every day.

I'm maxed out on Baclofen dosage. The only thing I've found to help the achey legs and cramps is taking TinZANidine before bed. That REALLY helped! Please know, I try to minimize my intake of meds, but I really benefit from those two.

My feet and ankles swell pretty bad too. My best solution was compression socks. If you choose to try compression socks, be aware they are very hard to get on. Do yourself a favor and get a stocking donner.

Hope this helps. TB
 
For those of you using compression socks and/or trying to improve circulation, I recommend trying Vaso-Wraps. Much easier to get on, and very effective in some circumstances. Also, they are free for vets, I believe.
 
Laurie, the tops of my feet look like balloons when they swell bad. It doesn't appear the Vaso-Wraps are intended to help the feet, are they? TB
 
No the massage should not leave you in pain for 3 days.

Talk to the person you are seeing and make sure this person works with you to what your body can handle.

I did a lot of massage on my Chris. Now it's very different as he was rapid progression ALS, but the point is the same - I did it to effect and I adjusted what and how I did it as his body changed.

So if you can get a good relationship with this therapist then you should get a routine out that reduces swelling, increases ROM but does not leave you in pain for 3 days.
 
Hey Fiona, i also get a weekly massage in fact today! My feet swell up get red and are " ice" cold have not used the socks or the wraps yet but as soon as va gets them for me I will. Yea the massage is wonderful for me and l only get good effects. I am concerned about these feet and circulation as we hear more and more about clots. Hope ya figure things out! Love ya chally
 
I am confined to a PWC and have foot and ankle swelling. I have not had any luck with socks. Things that have helped are:

1. Bed that adjusts. I adjust the bed so my feet are at the maximum height while I sleep.

2. I have a Permobil M300 PWC. When I watch television or read I tilt it back as far as it goes and extend the feet. My legs rise to about a 40 degree angle. This really helps.

3. Tried to eliminate salt from my diet. No snacks that have salt.

4. Standing exercises. I have a bar I use to stand and do knee bends. I do this for about 20 minutes a day to increase circulation.
 
Hi Fiona,

First off, I’ve ALS not PLS, but have both UMN & LMN involvement. I don’t know how my spasticity compares to yours. I have high tone in leg muscles and take both Baclofen and Tizanidine.
I wonder if your masseuse knows how to massage someone with a neuro condition? It can be quite different to working on properly functioning muscles.
I have regular physio (which includes muscle massage) on all major joints by a specialist neuro physiotherapist and sometimes have discomfort in specific muscles, especially if I’ve not been for a few weeks. It doesn’t hurt at the time, but she gets more range from the joints than I can. She also says she expects I’ll feel a bit sore the next day, if she has to work hard on a specific area, though it’s never lasted 3 days! I put warm heat packs on sore muscles to relax them.
I get great benefit from it, mentally as well as physically, as you probably do from the massages. Hope you can continue with your therapy.

Take care,
Ells.
 
Hello, and thanks very much for your responses. It's given me a bit more to chew on...

TB- I tried compression socks. Or, I should say I tried to get compression socks on and was so exhausted after I had to lie down. A stocking donner is in my future, I think. Apparently I will never be able to realize my dream of becoming a wrestler, as I can't even beat inanimate objects.

Laurie- I will look at the Vaso wraps as an option for sure. I had something similar for when I had my ACL replacement and there was risk for embolism.

Tillie- Thanks for the feedback. I wasn't sure if it was something expected or not. I'm not sure how much more gentle she can get before it becomes reiki! At the time, it seems she's barely touching me. She did her final year of training at a clinic for neuromuscular disorders- including those with ALS. What she was doing before was working, but only the last two weeks has resulted in sore muscles. Whatever I have (PLS or UMN onset ALS) can't have changed that quickly, so I'm hoping it's weather/stress/something else in combination with the massage. I will be putting in a call to the ALS clinic to see what their pt can tell me. Because I don't have obvious LMN involvement, I wasn't sure if sore=damaged, or just another facet of spasticity that I can ignore. I'll maybe give next week's session a miss.

Bill- Thanks for the tips. Feet up more, less salt. Sigh. I'm in the process of getting a pretty fancy chair that will even stand up for me and has a function where it will elevate the feet above the heart. I'm hoping that will help.

Ells- I find I really benefit from my sessions too. It's not just the actual rom stuff, but the feeling that I am doing something productive to help myself. Unfortunately, due to fatigue, I am not able to do anything more active unless I want to sleep for days after. Weirdly enough, I find my spasticity is quite mild, but muscle fatigue is what's kicking my behind.

Chally- That's exactly my worry. Charlene's experience has made me doubly so.

Thanks all
 
Maybe using heat to warm up muscles before starting could help. That was really important for my Chris in the winter as he had a lot of spasticity.

Maybe having a session that is just heat and massage - see if that makes a difference.

Apart from the pain, do you feel it's all been helping your muscles and joints?
 
Tillie- Thanks. The use of heat is not something I've thought to do on my own. The therapist does use a heating blanket before my sessions- I'll continue at home as well.
I do believe it helps with the puffiness of my legs. I may have to accept better circulation may come with muscle pain. My concern was that I was doing some sort of damage, given the pain and increased reactiveness (I think that's a word!) of my muscles. I'm willing to put up with it if I know I'm not also causing irreparable harm. Something to bug my neuro about, perhaps.
 
The feet, not so much directly, TB, but preventing the fluid from getting that far is also a goal and there they may help. Once it gets there, you want to massage the feet such that it moves up, gradually moving the fluid all the way up and of course maintaining the elevation in bed/chair always.
 
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