Swollen Feet

[Dagmar]

Some medications can cause water retention and swelling of the arms, hands, and feet.

So can inactivity (mostly sitting/laying in one position for too long). It’s important to move our arms and legs, ideally every hour. If the person with ALS cannot move on their own, then a caregiver should help with passive range of motion exercises.

[len-jax]

Hi Sonsu,

I had edema in my legs and feet for 20 years before getting ALS. I used to wear thigh-high Jobst compression socks but can no longer get them on having ALS. If you have mobility, you might want to try the shorter compression socks if you can get them on. There are devices to aid in getting them on.

Things I did that helped:

 

• • I reviewed my meds with my GP for any that caused edema. She recommended stopping Gabapentin, which I take for neuropathy pain.
    • I lost 15 pounds of water weight, and my leg circumference went down 3 inches over 2 months.
    • Neuropathy pain returned, so I restarted Gabapentin
    • Edema returned
  • I spoke to a Pharmacist about options – She recommended Cymbalta (an anti-depressant), which had some data saying it also helped neuropathy but didn’t cause fluid retention.
  • I was on Prozac, so I discontinued that.
  • At this time, I have started to lose water weight, and my neuropathy has not returned.
  • So, talk to your Doctor and Pharmacist
• I am in a power wheelchair full time
  • An exercise I do that helps
    • Extend the foot pads straight out – it will put pressure on your feet and legs, pushing you back in the chair. Bend your knees and straighten them 20 times, 4 or 5 times daily, to increase the blood flow. (It is similar to a leg press)
    • If you can still walk, do that several times a day.
• I sleep and nap in a lift chair that gets my feet above my heart, so the fluid drains from the feet and legs – this helps a lot.

Hope that helps,

Len

 

 

[MICHAEL ADACKAPARA]

Hi Sonsu,

Some good ideas are provided in the replies above. Our heart pumps the blood to various parts of our body. Once it reaches the capillaries at the extremities, it does not have the pressure to push it back to the lungs/heart. Normally the muscle movements during activities such as walking will compress the capillaries to provide this extra pressure to push it back to the heart. In the absence of much muscle movement, capillaries get filled up and they push out the fluids from the blood in the capillary. This causes the swelling. If the problem is not adressed, it could cause skin breakouts and sores.

1. I elevate my legs above my heart 2-3 times per day using my power wheelchair. I elevate my legs using 6 pillows while sleeping. These measures have helped.
2. Used compression socks; didn’t help any.
3. Used a foot and calf compression massager with heat; didn’t help any.
4. Didn’t use any medications.

Michael

[Kathleen B (Katie)]

Yes—good suggestions to elevate feet 2-3 times daily…a recliner chair also helps do this if don’t yet have a power chair with tilt & foot rest lift features.
plus, I used a thick, large beach towel (rolled up & taped around ends) to put under ankles to elevate feet even better—pillow from couch or bed was too squishy.  At nite, it it easier to put an unused blanket folded up UNDER the mattress at end of bed (I could not keep legs on pillow stack).  Best option is an adjustable bed with foot rise feature, but not always in the budget, so improvise is needed.  Plus—I do wear soft tennis shoes (elastic laces) and if my feet start feeling ‘tight’ in the shoes then I know it is time to elevate them before it gets too far along.  (Even sitting for 2 hours can cause swelling some days)…but 20-25 min elevation can get relief if caught before feet are ‘double’ in size.  I have only momentary stand & shuffle-pivot ability in legs/feet, so I’m working every day to maintain this ability as long as possible. (Yes, I went thru the compression socks & calf massage phase in year 1…now in year 2 1/2 since diagnosis, so things are in continuous evolvement).  Keep adjusting as needed.

[Jennifer O'Brien]

Thoughtful input from all here. I actually asked my doc about this yesterday, and in addition to mentioning most of the suggestions here she said one of her patients had said there are now compression socks with zippers, which could be helpful for those with ALS-related arm stiffness or weakness. (I see some posted on Amazon.) But Sonsu, suggest your check with your doc, too.

Good luck!