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Lower leg circulation
I have had slow progression for the last 4 years, and am age 57. I have only lower motor neuron loss, no upper motor neuron involvement. I am in a power chair, but retain the ability to walk a short distance with support My LMN loss has led to very little musculature remaining in my legs -basically from my hips down – which in turn led to circulation issues in my legs. . My doctors have explained this is a lack of venous return – the muscles that are gone would normally assist in moving blood, etc back up to my heart. The biggest problem this is causing me is my feet and lower legs that are always cold. Doesn’t matter what the outside temp is. They don’t just feel cold to me, but are physically cold to the touch. I have asked for suggestions from both of the neuromuscular specialists I see, but they have offered no help. I had hoped this was a relatively common occurrence and that there might be a device of some sort with which they had experience. They both looked at me like I was from another planet when I asked. Best suggestion I received was warm socks. Not looking for medication as I know that one doesn’t exist for venous return problems.
I am hoping someone here might be experiencing similar symptoms and found something that has helped. Or at least relate to my frustrating,
Also, if I don’t wear compression socks, or keep my legs elevated, or if I am too active my lower legs and feet swell dramatically. I have learned to live with this as I am still working, and it is correctable with elevation, but still a nuisance.
Please let me know your thoughts and ideas, and thanks!
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11 Replies
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Hello,
I am 4 years in as well and am 53 years old. My left leg is exactly as you describe and I too have found no help from the doctors on this. My fixes are heated socks, loose fitting shoes or boots, over the thigh socks, heating blankets around the house and eleavting my legs whenever possible. Acupuncture seemed to help me in the beginning but provider is not ADA accessible any longer. Massage would be helpful as well. Hope this helps!
ALS Strong,
John
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I have had ALS since the summer of 2022, diagnosed for sure February of 2023. I’ve been in a wheelchair since 2023 summer, in December of 2023 my arms started getting weaker and now my arms are very limited use. My legs have somewhat of the same issue you have. My legs are elevated overnight so it’s not too bad. Last year when I noticed how cold my feet are in the winter time I bought these leg warmer and compressor sleeves from Amazon and there’s a good circulation mode that you can put them in. They’ve helped me quite a bit. See this link below. https://www.amazon.com/gp/product/B08QMQDW2N/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>FIT KING Leg and Foot Massager with Heat, Air Compression Leg Massager for Circulation and Pain Relief Helpful for Swollen Legs Edema RLS
-Chris
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My name is Kent Dickerson, I can walk with a walker about 20’ but my circulation is so bad in my calves, I’m constantly getting leg ulcers. As far as cold, I’ve had no problems, I live in Indiana and where gym shorts, no socks or shoes, because my feet get swollen like concrete blocks when my legs are down in powerchair. I sleep in lift chair. 70% of time I hunt deer barefooted. My feet don’t get cold at all down to 38 degrees I would guess.
Anyone getting leg ulcers? If I could wear socks or shoes I would but after 30 minutes my feet are swollen and throbbing. I’ve even tried to buy extra wide, big toe box and 3 sizes to big and still swell in 30 minutes. Any suggestions would be appreciated.
Kent 💙
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Hi John and Kent,
Do you have any Lymphedema Clinics in your area? A little of my history. I had severe edema for 25 years and wore thigh-high, 40 mmHg Jobst compression hose for all those years due to venous insufficiency. That worked well for those years. I now am in a PW full-time and have been for 8 years, but I still can do transfers. As I spent more time in my PW, the edema became worse due to inactivity, and I could no longer get the hose on.
The specialist doctor prescribed a machine that applied air pressure to inflatable zippered leggings. It began at the feet and progressively increased pressure up the legs and over the thighs – the idea was to force the fluid toward the heart to filter it out. It helped a little, but the legs and feet filled up quickly. My legs/toes didn’t have ulcers but were weeping fluid through the skin. I no longer had ankles, and I filled out a size 12 shoes that were 10E wide. I laughed. They, indeed, were “Clown Shoes!”
The neurology team and primary and specialist doctors had no solutions other than more Lasix! Later, I couldn’t get an appointment for some issue with my PC doctor, so I made one with her Nurse Practitioner. She treated my problem and then asked how my edema was. She had read my chart thoroughly! She examined them, took pictures for the chart, and said she would refer me to the Lymphedema clinic on the second floor of the clinic. I cannot say enough good things about NPs and PAs which I have had over the years. They spend more time, are more accessible, answer questions by email, and think outside the medical box! Before she became a nurse, my NP worked in an auto parts store and was ASE-certified with car parts! She is the Best!
I spent about ten weeks with the “Lymphedema Ladies,” going twice a week for therapy. They are all OTs. I reclined in my power wheelchair for treatment as I could not transfer to their table.
My lymph fluid had started to gel or thicken in several places, especially the feet and ankles. They work on massaging those areas, breaking it up with their hands and a light suction machine, and working it toward the heart. It is relaxing as they turn down the lights and play soft music. My legs were so large I didn’t feel much in my feet. After about 6 treatments, I felt tingling in my feet – It had been a long time.
In between treatments, you must wrap your lower legs and feet with a special ace bandage (it is cheaper but requires more time). We did that at first because my legs were so large. You wear them all the time except when showering. As therapy progressed, we went to a compression sock with a lower leg Velcro wrap that they cut to your current size. Those were easier but more expensive. They measure every 4 visits to evaluate and adjust your Velcro.
My legs were reduced by 5 inches in circumference in certain places, but my ankles and feet are normal-sized, and I can feel them! The little walking I can do is much easier without the extra weight and size! I do have to wear knee-high compression socks and a lighter-weight Velcro leg sleeve. I wear those 24/7, except for showers 2 or 3 times a week. You must wear them all the time to maintain the fluid loss; many people don’t and return to where they were. My legs have been normal-sized for 1 1/2 years and feel so good! You can have a Vacation day now and then but must return to it. The sweet thing now is that Medicare covers two pairs of socks and Velcro wraps every six months, as they lose their compression.
It is an emerging treatment option that has been around for quite a while but has yet to be accepted by doctors. The OTs are doing an excellent job of promoting it as the gold standard! The OTs say they can also help people with edema before it develops into Lymphedema.
Hopefully, this helps all of you. It did for me, as I was close to having ulcers! I am sorry for this turning into a long book, but I wanted to explain the whole treatment because it does improve your quality of life! It is a win for us – and we need more of them. You could do a Google search for Lymphedema clinics near me. Several came up in St.loius for me.
Len Jax
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Thank you for the information. I’m hoping to avoid problem with maintenance PT. When I go, I have them exercise and massage areas that are problematic to keep the circulation going and prevent stiffness. But the battle continues as my body deteriorates. Will save the article for future reference.
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I am still very mobile with a cane and sometimes AFO’s. Since being diagnosed I have cold feet most of the year. Not typically in the summer in the Midwest. When I asked my doctors they said they had not heard of anyone with cold feet as a symptom. Interesting to find out there are people like me out there. For about 9 months out of the year I wear foot warmers in my shoes. Little Hotties is one brand I like. These help tremendously. I usually buy them on Amazon or at Costco.
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Hi John,
Just wanted to let you know I have the same problems. I’m 68 and was diagnosed about 2 years ago. My left leg has wasted, but fortunately my right leg and other limbs are still in pretty good shape. I can walk with two canes or a rollator walker. My left foot and ankle swell when I’m up and about for too long, and they get very cold, even in summer. My neurologist suggested I see my PCP about it, but otherwise had no advice, other than to say it’s not uncommon. Thinking I’ll try heated socks and/or compression socks.
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Thank you all for the information in this article. I am worried about lymphedema also as my feet just began to swell. I have had cold feet often in my life before my diagnosis but it’s worse now. If anybody can afford a sleep number bed 360° and maybe there’s another version, This bed has the ability to be set to either cool or warm your bed. And it can warm either the whole body on either side or just the feet which I find very helpful.
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Hello all,
My husband has bulbar-onset ALS, diagnosed July 2024, with symptoms going back until at least November 2022. After his PEG feeding tube was inserted in March 2025, we had Home Health professionals come to the house for a couple weeks, including physical therapy. The PT recommended a tabletop/floor plug-in exercise bike to keep his circulation going, $99 on Amazon, INS Gym is the brand. The pedals move for him, in two directions and at whatever speed he wants. He used it occasionally and then…..
I noticed his feet were getting dark purple from being sedentary, rather alarming. The docs said “venous insufficiency” and that he should do something to improve circulation. When he elevates his legs, that helps, or if he has the energy to walk around a little which he still does, that definitely helps. But now he uses the “bike” when he nebulizes, 2 or 3 times each day, and his feet look SO much better.
I know we all have so much equipment to support our people, but this gizmo has made a big difference. Had to share. ~L
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I was interested in this post and all the replies. I was finally diagnosed in January 25, but we believe that the ALS started in 21. Over those 4 years, I have had many doctors feel my ‘cold’ foot with no explanation provided. One trip to check my venal sufficiency found that it was normal. But the ‘’cold’ foot persists. I wear one thick outdoor sock to bed. All of my symptoms are worse on that side. No one seems to know why and the ‘cold’ foot is minor, compared with what I have read, but now at least there seems to be a connection and I will remember many things that have been shared. Thanks to those who have responded.
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My husband was starting to have this problemwas diagnosed in August of 2023. Illtell you what works for us. We massage the legs and feet with organic virgin coconut oil then apply compression stockings before bed. If the edema is particularly stubborn, we also do 10-15 minutes on a vibration plate twice a day also. The coconut oil is sold at Walmart and the vibration plate was about $100 from Amazon. He doesn’t stand on the plate. He just sits with his legs up on a recliner and I rest his lower legs on the vibration plate. It makes him itch like crazy for about 15 minutes afterwards, but it works. I’m kinda surprised nobody mentioned these in here.
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