Adaptive equipment

[RDT]

I use compression stockings anytime I leave my house. But when home & sometimes when out, I get severe leg weakness with horrendous cramping & spasms. Then I must wear a calf support splints.

I also have weakness and spasms in my arms so at times I also use arm compression sleeves which really help. I also have weakness to my hands & wrists, so at times I must use wrist & hand support splints similar to those given whom have carpal tunnel. Though bulky, they’re very helpful.

I must use a cane to walk short distances, but longer distances I have to use a rolling walker that converts to a wheelchair when I can’t go any further. So definitely my cane is the one thing that I can’t live without.

Standing is extremely difficult for me as well, so fortunately my shower has a built in seat that allows me to shower easily and I have a separate bathtub that I can swing my feat into. But most of my activities of daily living are done either seated or laying down.

[Ashley]

Hey

@rdt

I also use compression socks a lot! I definitely have to wear them everyday at work and I try to wear them in winter. In the summer, I’m like you and overheat so I can’t wear them out.

I have some weakness in my shoulders that I mainly notice during overhead actions. But I’ve been doing a lot of physical therapy for my shoulders because I had to have surgery in June on my left shoulder due to overworking it at work and bursitis.

That’s awesome, I’m glad you have your cane and chair! I haven’t had to use either so far, but I’m sure its in my future. A shower seat is great to have! I wish my shower had one, it’s not big enough for me to use a chair in there. My bathroom is pretty small sadly.

[Ruth Nixon]

Hi. I’m very interested in the idea of compression stockings. That is a new one on me. I use a cane for short distances and a rollator for longer. But the thing I could absolutely not do without is a shower seat. I really suffer with heat when I take a shower and my legs get very weak. So it has been a game changer to be able to take a shower comfortably.

[Ashley]

Hey

@ruth

My neurologist wrote me a prescription for compression stockings because they help a lot with autonomic/POTS related symptoms. I began using them before I was officially diagnosed with LEMS and they help a lot! I would ask about getting a prescription because sometimes your insurance will cover the cost of them or a portion. If not, I buy compression socks from amazon usually because it is easiest for me. You can get either socks or pantyhose type stockings. At first, I wore the waist high pantyhose style stockings and found they worked really well, although sometimes they were a pain to get on. Now, I wear the socks because I tend to overheat at work since I’m running around for a good part of the day. I would definitely recommend giving them a try! Let us know what you think!

[Joyce Crawford]

Hi,

I have been using a cane off and on for about 2 years and bought a rollator to use for longer distances in the near future. Being able to sit on the rollator and rest periodically when out, should give me more exercise in the long run. I have a seat in my shower, but discovered 2-3 years ago that showers were fatiguing me tremendously. Now I take baths, so that I am sitting the entire time, which lessens the fatigue. Does anyone else have trouble with SOB when the fatigue come on, or when talking while excited? I have had this problem for as long as the first symptoms of LEMS. My cardiac and pulmonary workups were clear. Also, I was having a lot of leg and foot cramps, but my PCP told me to take magnesium 400mg daily and it has helped to eliminate almost all of them. I was diagnosed with sleep apnea about 3 years ago, so I sleep with my Cpap every night. I have wondered how common sleep apnea is with LEMS.

Joyce

[Dawn DeBois]

Hi again @joyce275,

One of my first LEMS friends, @bettyl-ann-lasley uses a cane and then a rollator for longer treks. She has even gone to patient advocacy meetings with me. I miss those this year!

What is the SOB you are referring to?

I noticed your comment about cramps and magnesium. The very first thing my neurologist cautioned me on was to NOT take magnesium supplements when I was diagnosed. Magnesium slows down the neuromuscular junction even more than LEMS does. It’s contra indicated for us as well as Myasthenia Gravis patients for the same reason.  For cramps, I make sure to drink plenty of fluids with electrolytes (Smart Water or Vtamin Water zero without sugar) and get plenty of potassium by eating prunes.

Here is a cautionary list of meds/vitamins published by the Myasthenia Gravis Foundation of America.  Some are able to do ok with some magnesium and I don’t avoid it in foods; but if I eat too much of something with magnesium in it (chia seeds for one example) I literally have a much harder time getting up and down stairs.

[Joyce Crawford]

Hi Dawn,

Thanks for the info on magnesium. I think that I’ll stop it and see what happens. I have a lot of trouble going up the stairs in my house. Maybe that will get better off the magnesium.

Sorry for using the medical shorthand. The SOB is shortness of breath. Mine comes on with any mild or more continuous exertion, or talking rapidly.

Joyce

[Dawn DeBois]

Hi @joyce275,

 

Shortness of breath is much better than what I was thinking. Haha. I do know of some people that have had that same struggle when their LEMS isn’t controlled yet. Once you are on treatment I’m hopeful you will see improvement like many of us have.

[Ashley]

@joyce275,

Sometimes, It would definitely be nice to have a rollator! Showers also tend to fatigue me, but baths actually flare up my autonomic symptoms, so I tend to stick to showers. I’m glad you have been able to make adaptations that work for you! Sometimes we have to get creative when it comes to finding things that work for us.

Like Dawn said, magnesium can cause LEMS symptoms to flare so it should be avoided as possible. I find that I get cramps in my legs near the end of my IVIG treatment cycle and I know a few other LEMS patients have them as well.

Make sure to stay hydrated.

Have you heard of dysautonomia? Many LEMS patients have symptoms that are caused from dysregulation of the autonomic nervous system.

If you are like me and have a lot of symptoms related to dysautonomia, you want to make sure to increase your sodium intake or find drinks that have higher amounts of sodium. My neurologist recommended I have about 3g of salt daily to keep my dysautonomia symptoms at bay. Vitamin water and smart water are a good choice in general, however both contain almost no sodium, so it does not help me and can further dilute your blood (in turn, causing more issues) if you have dysautonomia. I prefer drinking zero sugar Gatorade, powerade,  liquid IV or Drip Drop. You may have better results with one of those and that is what my neurologist recommended to me!