Over Heating, legs/feet swelling.

[ALAW]

Hi PALS,

I'm posting for my Father. He was diagnosed in Nov '15 at the age of 55 and has advanced very rapidly. His mobility is very compromised with little to no control over his left leg and losing motion in his right. He can still walk but it is very painful.

To the point:

He sits in a Lift chair basically all day unless being bathed. In constant pain and constantly over heating and his legs/feet are very swollen . I think his over heating is due to the muscle spasms.. We have a fan but it seems to be no relief.

His legs and feet are so swollen... We ordered compression socks but the Large and XL were too small- he took one look and said NO.

Anyone have recommendations?

Thank you

 

[KimT]

Have you tried massage to his legs, cold towels, or soaking in epsom salts with cool water? How has his doctor addressed pain? Does he have other diagnoses besides ALS? Someone in my group had type 2 diabetes with peripheral neuropathy and found relief from smoking weed. Medical marijuana will soon be available down there but I would go to a pain management specialist to address his pain and his primary care to make sure other issues aren't making him feel worse.

 

[ALAW]

Hi Kim,

Doctor at U Miami won't prescribe pain meds because of his depressed breathing. They told us we need to have a RN or CNA here to monitor him in order to do that. He was prescribed Meloxicam for his hip and Tizanadine (muscle relaxer) for the muscle spasms. It's pretty uncomfortable to go anywhere because we live in FL and he's SO sensitive to temp changes.

 

[KateEmerson]

Hi ALAW,
Your father is so fortunate to have a daughter like you. You are so smart to come to this forum with your questions, there is so much experience here and the people are so helpful.

I can only tell you what my PALS had and what helped. He first developed swelling in his feet when he stopped walking and weight bearing transfers. The transfer stockings were too small for him also so our visiting nurse recommended and got Medicare to pay for a Circu Flow model 5150 Compression Therapy pump with the boots that go from his toes to the top of his legs. This really helped the swelling for quite awhile and he loves it, it's like having a massage.

He also developed " dependent edema" which can can significantly improved by elevating that area of the body as much as possible. Over time, by far the worst swelling came when his nutritional status fell significantly and his blood protein and albumin levels dropped below the normal range, which happened when he was totally dependent on commercial tube feedings. This was almost everywhere and severe especially in all the dependent areas of the body.

Believe it or not, we got his protein and albumin levels back to the normal range with homemade bone beef broth in less than 2 weeks. The broth and some lasix have almost completely eliminated the swelling and of course we continue with the boots for an hour twice a day. I thought I would give you the whole swelling story just in case it could be helpful in the future. Hope this may be of some help.

 

[WendyWooG]

Hi ALAW
Get your doctors to review dads meloxicam, it is a great painkiller but I found that i had major leg and ankle swelling while taking it. It could be contributing to the problem. Might be worth looking at alternatives.

Wendy

 

[lgelb]

So what is being done about your dad's breathing? Does he have a BiPAP? The clinic can't have it both ways. Have they ordered PT in home to work on the edema (do some work, show you how)?

When he is in the lift chair, are his legs elevated? Do you switch the angle from time to time? Is he adequately hydrated?

There is no reason to forego pain meds (of which morphine is only one) if they are needed, against concerns about respiratory depression, which is actually rare at optimal doses, until the end of life. The idea would be to support his breathing so as to reduce the risk of pain meds, which in the right doses could actually improve breathing. The clinic sounds lame and clueless, so I'd have a heart-to-heart with them and/or consider another.

Best,
Laurie

 

[tripete]

Forget what everyone says this disease (for some of us) is very painful. I also get extremely hot, my wife is convinced that there is a endocrine malfunction that happens with ALS. And like your dad if I am in my wheelchair my feet swell up like crazy. The only thing I have found is to try and move my legs through slow painful walks or have my wife do it for me. But the relief from this is short lived. I have ordered a gel set and more comfortable supports for the back of my legs and bottom hoping it will releave some of the swelling.

 

[Atsugi]

We massaged my PALS legs and feet with deliberate intention. That is, we pushed the fluids up and out quite noticeably. Then we got her a pneumatic leg compression boot that did the job for us. Change his leg position every 10 minutes.

 

[azgirl]

When the swellings first started and my feet the only thing that helped was getting into bed with my feet raised for several hours. Then it helped to have someone massage my feet and legs. For the heat they would take ice bags and put them on my neck and chest.

Sounds like BiPAP is needed, the sooner the better. Range of motion or all of legs and arms can also keep the blood moving.

Sitting in the recliner all day is likely not helping the swelling.

 

[affected]

Definitely I go with everyone else - the legs need to be moved passively, and massaged and elevated, and his position changed and combinations of these need to be done multiple times a day.

No one can just sit in any chair all day unmoving without consequences on their circulation. If you have a PT I would get some advice from them on how to do these things the most effectively.