legs and feet

[irismarie]

I know we have to get used to black/purple, freezing cold, swollen feet. But I am beginning to wonder why my entire legs and maybe my body also are so swollen. I do try to keep the legs up most of the time but it is not always possible. But my ankles look ready to burst and the toes are barely visible and my knees are like balloons. Do you get these symptoms and should one take diuretics?

Thank you and love to all

PS Just wondered if this might have anything to do with the real breathing difficulties I have been having lately, too?

 

[GlenBrittle]

IrisMarie,

I have much the same symptoms. When you start sitting most of the day, and this disease stops talking to those muscles they will collect fluid. Due to the lack of muscle movement, the fluid just sits there, when it would normally be moved by muscle activity and blood flow.

I have a special pair of elastic socks (TED?) that keep the fluid from collecting. They are a bugger for someone to put on you, but they do the nicely.

I believe that your breathing difficulties are also caused by the weakening of the muscles in the diaphragm.

Glen

 

[minnesota]

Hi IrisMarie,

If only one of the cute nurses would have been around last time you were in the doc (If I remember the post correctly) you could have asked them for a foot massage! I understand that will help get that fluid moving. Sorry to hear about your feet. Jim's ankles are also swollen today and we'll talk to the doc/team at our quarterly appt tomorrow. If they have any other suggestions I'll let you know! Marie

 

[abbas child]

IrisMarie, I have the very cold, swollen feet and ankles. Only by raising them to the point where my toes are above my waist and keeping them up will they slowly lose the swelling. I use a heating pad to make them warm, and in my hospital bed, I raise the feet higher than my head, and stay in bed for at least 12 hours a day (not with head down all that time), where I can do things... whereas to get my feet higher than my head in my chair, I'm staring at the ceiling or taking a nap... boring.

Look at your feet and ankles before you get out of bed in the morning. Have they returned to a normal size? Mine do.

My knees were very odd shaped while my calves atrophied, but became normal looking after the thighs atrophied. I think for me the knee problems were caused by my side shuffle gait (feet "turned out", knees not "turned out") as well as many falls. Once I was restricted to the power chair, my knees became normal feeling again as well as normal looking.

The "TEDS" mentioned by Glen do help. I used them until I could no longer put them on myself (I raise enough havoc having caregivers get my Ugg boots on me every day).

I also agree with Glen about your diaphragm muscles causing your breathing problems.

I've looked at pictures of hands which are affected and are swollen. I really think it's the same thing... as Glen said, the muscles don't pump the blood back "up" to the body core anymore after they're atrophied. Bummer.

Love you lots...

 

[JeffP]

i know nothing about this but it sounds pretty painful .i hope all of you are able to get some time of relief from this and my prayers go out to you all

 

[Phil M]

Iris....you want me to give you a good rub down?

 

[helpinhand]

Irismarie,
Actually yes severly swollen limbs the way in which you are describing can be a sign that your body is retaining to much fluid, that fluid can sometimes accumlate in your lungs and make it difficult to breath, so if you are not seeing any improvement with elevating your legs during the day or night or your breathing worsens please call doc for an appointment. The breathing condition term would be Pulmonary Edema if you want to talk to doc about it. x-ray can diagnoise it, and diuretics can help fix it if that is the case. It is hard enough to breathe with ALS alone, and that in and of itself may be what your experiencing. Like Glen stated the weaking of the diaphragm cause difficulties, but you don't need anything else complicating things thats for sure. Remember always make sure you take care of yourself before it gets to bad. You always can make me smile your a special lady. Hopes this helps alittle. Prayers and hugs sent your way.

 

[irismarie]

gmorning, Ann, I wear Uggs, too, but can wear them all day and my cold feet makes the fur freeze instead of them warming my feet

Thank you yet again Helpinhand. I think you should be promoted to be our very own breathing specialist. I have a feeling that may be the problema swell. Go to GP today.

Phil, I shall be awaiting you with pleasure, black and blue swollen feet and football knees and cough all ready and waiting to seduce you ;-)

If the diaphragm muscles are gone, isnt that normally the last stage? Without a machine one can no longer breathe, obviously:-( Is it then a question of dying or ?

 

[irismarie]

PLEASE someone answer thata last question. I need to know where I am with the diaphragm muscles going so rapidly. Is there a next stage?

 

[abbas child]

Darling IrisMarie, Yes... the Bipap is to do the job that those diaphragm muscles can no longer do, and the Bipap can be worn (used) progressively more and more frequently to get rid of carbon dioxide as well as take up oxygen. Some ALS patients are trached and use a vent. Joel does, successfully, and has a website (Joelc) you can find under his contact information.

If we cannot breathe, we do die. That's the stark truth of the matter. It is said to be the cause of most ALS patient's death.

On a much lighter note, my feet stay warm in Ugg boots if the temperature outside is in the seventies or above. They simply keep that warm feeling after getting into my chair longer... but eventually the feet do get cold as the day wears on.

I hope your GP answers questions about the edema for you today and that you get medicine if you're retaining fluid, not just the "ALS" swelling, but the excess kind which Helpinhand addressed.

Love you very much,
Ann

 

[CAHPAH]

IrisMarie
So sorry to hear about your difficulties. Use your bipap as much as you can to save those diaphram muscles. Serena has been losing her diaphragm muscle for over a year and a half and still going good. You hang in there.
Jim

 

[irismarie]

THANK YOU, friends. I HATE ALS. Dont suppose any one will argue with that:-(

 

[handinhand]

Hi ,sorry that u r having problems...what was your breathing tests results? Do u remember? Mine was 85 for one and 28 for the other.....I use the bipap all night with oxygen ..in the afternoon I put it on for a couple hours...it helps for me to get through the evenings...oh yes iris this is not fun at all. I guess the vent will for me depend on what is going on with every thing else in my body.. How about you...hugs, Lin

 

[Phil M]

WOOT! I hear you French ladies have it going on! I'm not worthy!

 

[luvnmm]

Phil - you are too much!

Irismarie - I am truly sorry to hear about your feet/legs and the difficulty breathing. I know my mom uses her bi-pap w/ oxygen at night and it helps her. I think she's actually fighting the idea of using it during the day, but time will tell. Keep your feet elevated as best you can and put some fuzzy slippers on to keep your feet warm. I love fuzzy slippers - they make your feet look like little animals...giggle... I hear that a good foot massage can help with the edema as well. Maybe you can find a hot male to help in that department. May as well enjoy the view as well as the feel!

Have a blessed day!