how do you deal with day to day stuff? (and update)

[wendya432]

Just wondering how you all deal with the daily issues of being uncomfortable all the time? It's not even so much pain, although I do hurt and have days that I am in pain. But every day I am just so uncomfortable. I think it's a combination of the weakness and spasticity. I do take baclofen now, 10mg at night and 5 or 10 during the day if I'm bad. And I'm on tegretol which has helped a bit, too. Although they both make me sleepy. But I just hate that I'm so stiff and sore all the time.

An example.. when I am just up and about doing things around the house, my legs just feel awful. Not like oh my gosh I'm in pain, but just like, wow I need to sit down because I just can't stand up any longer. I do the dishes and have to stop before I"m done because my hands have gotten stiff and can't grasp things well anymore. And they just feel... tired I guess.

So at this point I'll sit down and I still have this aching uncomfortable feeling of my arms and legs just being over tired I suppose.

My neck and shoulders tend to hunch up and forward. I don't realize it until they are aching and I have to try to get them to relax and go into a more natural position. But they are stiff and tired, too.

My ankles hurt from the spasticity in my legs and I'm guessing from the muscle weakness. (It amazes me that I can have this spasticity and still feel so weak)

Then I get this tightening feeling in my rib cage. Almost like the practice contractions you get when you are pregnant. But they don't go away until I take a baclofen and a robaxin.

I guess my question is, is there a better way to deal with this stuff? Or do I just have to get to a point that I accept that this is my life now and I'm not going to feel ok anymore?

I don't want to complain. I know I don't have it so bad. But I hate feeling like this all the time. It just never lets up. And I have a 4 year old at home with me all day that I'm chasing around (he's going to preschool soon).

Also, on a side note. My labs the neuro did last visit all came back normal. Zinc, vitamin E, and copper all are right in the middle of the range. Also tested negative for the fragile X syndrome he had done. I think at this point he's kind of grasping at straws. Next appointment isn't until December and he mentioned maybe doing a muscle biopsy. I'd almost be happy for him to say, I have no idea what's going on, everything else has been ruled out, your UMNs are dying and you're going to be in a steady decline. I think I could just accept it and move on, you know? Oh well.

 

[IhavePLS]

Hi Wendy,

Actually, you describe precisely above the symptoms that I experience each and every day. I can't remember where I read this (WebMD or Medscape?), but PLS'ers tend to have low back, thoracic, and neck pain -- my guess is that this is true because our legs are compromised (weakness, pain, spasticity, gait). The phenomenon is similar to the situation in which avid runners who have foot problems (overpronation, e.g.) will inevitably end up having knee problems, followed by hip problems, followed by low back pain, and on and on. Everything's connected. So I'm not surprised that you are having the sx. you describe above. While I had a major low back surgery a few years ago, I continue to have not only back pain, but thoracic, rhomboid, and neck pain -- none of this is surgical - a neurologist I saw recently (a "renowned" one at that) confirmed that all of these muscular sx. are, in fact, related to PLS. I, too, get arm pain - and weakness; sometimes, I become overly exhausted just folding laundry, putting away dishes, or even drying off with a towel -- my arms feel "dead," almost as if I had just maxed out lifting weights -- shortness of breath is common, too (not because of respiratory issues, but because my muscles are being overworked). I also get sick and tired of being sick and tired. And my symptoms tend to cycle (you may recall that I asked Joyce about cycling recently). I will often have several "good" days (not great, but tolerable), followed by several days of increased leg, arm - and as above, back, neck, etc. - pain, malaise, inability to sleep because of spasm. I happen to be right in the midst of a downside right now (3 days and counting). I often have terrible difficulty working - it's hard to concentrate when one feels so miserable.

If you do a search, you'll probably find a post or two that I left when UMN disorder was being considered (pre-diagnosis). In those postings, I believe I mention the very kinds of sx. you describe, Wendy.

As to your labs, it makes sense to me that they are normal. A muscle biopsy is a very good idea as well (I'm surprised the neuro I mention above did not recommended this).

Wendy, don't be concerned with diagnosis. Just remember that PLS is a diagnosis of exclusion - many folks wait for years after onset of symptoms before being diagnosed. For this reason, it is important, too, that you do your best to recall (if you can) when you first began to notice symptoms.

Mike

 

[IhavePLS]

Wendy, to add to my previous post, in one of the very first threads to which I posted, I mentioned the fatigue, malaise, pain, etc. that comes with PLS. Everyone who responded said that they, too, understood the general discomfort that this awful disease brings with it. Interestingly, it was mentioned that the feeling of discomfort is hard (I would argue it is impossible!) to describe in a way that anyone not have PLS could truly understand. PLS is not an easy disease to live with -- and because the constellation of symptoms are so complexly varied through time, nor is it so easy to define. It is this complexity, I think, that makes PLS so very challenging to diagnose.

Mike

 

[billbell52]

Agree with Mike. If they ever invent a test for PLS I am sure some people don't have it or there are several types of PLS. I just don't see how some people can still use a walker after 15 years and some people are confined to a PWC after a few years.

 

[dalvin]

i have a theory as to the seeming contradication between spaticity and weekness. i think its because the muscles are always tensed up that after a while they just get tired and start to hurt, could be wrong but sounds reasonable to me. about the constant pain, it was suggested to me at my als/pls support group meeting to drink a small glass of tonic water about an hour before bed time. seems to help, think its the quinine in it, note leave the alcohol out unless cleared your doc

 

[dalvin]

i put a tall bar stool in front of stove for cooking and just slide it to the sink to wash dishes that way i can save my energy for things i'd rather be doing

 

[AKmom]

I have come to the conclusion that uncomfortable is my lot in life now. There is not much I can do other than take breaks often and dose meds to keep me as up and going. The alternative would be drugging myself to oblivion and not be able to do anything, including running my own home business that I do. So I choose to just put up with the yucky feeling. Yes I get tired of it, but no one in my house wants to hear my complaints. Although, if I do get female doggish from over doing, the others in this house now know they better get busy and do some work around the house to ease my burdens.

 

[johnnyliverpool1]

gotta say ditto to all that..........pains the name of this game......could be worse though, i guess........johnny

 

[IhavePLS]

Spot on, Johnny....pain is the name of the game.

I was just talking to my wife this morning about the impossibility of describing the dreadful sensations that come with this vile disease (here, I am referring to one's ability to describe his/her sx. in a manner that someone would really have an "Aha!" moment). I really do believe that there is an empirical reason for this - it is not easy to articulate this clearly, but I'll try to explain:

Before I acquired PLS (and I believe that every PLS'er here will agree), I never had experienced symptoms that were even remotely similar to those that I now experience on a day-to-day basis....and fortunately for the human race as a whole, few people will ever experience the symptoms associated with PLS, because they will never acquire PLS. But for the limited number of us who do have the disease, the reason we can't easily describe our sx. to someone in a way that they would understand is that the symptoms themselves are far outside of and well beyond of our own experiences. Again, I've never had any sensations like those I have with PLS. These sx. are just not familiar to us -- and therefore, we cannot explain them well. I think I once posted that when a previous neuro I had seen asked me to describe my pain, I responded that I could not do so (I purposefully left out the "at least not in a way that you will ever understand" part). His curt reply was: "Well...only you can explain it!" I did not respond any further -- because I knew he'd never "get it" anyway....I could not articulate the nature of my pain in a way that he'd understand; and even if I could have explained it reasonably well (I believe this is a virtual impossibility), he probably would not have understood what I was telling him anyway.

This morning, I was telling my wife that explaining PLS symptoms in a way that someone would understand them is like trying to describe the pain one would feel if struck on the middle of the back with a baseball bat. Because both sensations are (fortunately) so far afield of our usual frame of reference and understanding, we are incapable of describing them to someone -- or at least we cannot do it very well.

The other thought on this is that, when I have better days, I very quickly forget the discomfort and pain that the bad ones bring along with them. The human mind sure does have a remarkable way of blocking bad experiences. When I had a lumbar fusion, the pain was incredibly severe -- now, I can only recall that it was very severe, but I cannot recreate that same pain (which is a good thing). My wife has said that she immediately forgot the pain of having a baby. What the body feels cannot often be clearly stated in a way that it is comprehensible by another who has never experienced some particular sensation (or sensations). And Wendy, to circle back to an earlier thread you had initiated, I think that this is exactly why -- at least for now -- you've said that your husband doesn't "get it"; it is because what you describe to him resides well beyond the bounds of his experience.

All the above said, I hope you are feeling well -- at least for today.

Mike

 

[IhavePLS]

Wendy, one afterthought....where you conclude that you wish someone would just tell you that:

"...your UMNs are dying and you're going to be in a steady decline. I think I could just accept it and move on, you know?"

Two thoughts on this last comment, Wendy (it is one that I intuitively perceived as being a very sad one).

1) Implicit within your comment, Wendy, is that a diagnosis will change your acceptance. I can tell you - from my experience anyway - that the diagnosis itself changes nothing (except that it might bring relief that you do not have ALS). You'll still have the same symptoms - whether you are diagnosed or not. And so I don't believe that -- after being diagnosed -- you'll simply "accept it and move on." It's just not that simple.

2) I understand what you're suggesting when you refer to "steady decline". BUT...that all PLS'ers do experience a neurological decline (this is a negative thing certainly), does not necessarily require that you personally will inevitably experience a steady decline. PLS'ers do experience decline, but such a decline is not always steady, nor rapid. My point here is that there is hope.

Wendy, I sense that you -- like all PLS'ers (and assuming you do have PLS) -- are in-process of experiencing the "If only things hadn't happened this way! If only things had been different!" emotions that we all do. If you are honest with yourself, I think you'd probably agree that receiving a diagnosis doesn't really change things all that much.

Try to keep it all in perspective. Focus on symptom control -- that is the central quality of life issue that we all face together.

Mike

 

[wendya432]

Thank you for all the replies. It helps a lot. I think knowing I just need to buck up and keep going helps. I was wondering if there was something that I was overlooking that would help.

Mike, I think I meant that because my neuro is still on this wild goose chase, and still looking at things that could be treated, there is this small hope that I'll get better or stop progressing at least. I am pretty sure we are beyond that point with all the tests we've done, but he hasn't come out and said it. And by steady decline I just meant that the future only means progression (even with some plateaus) and no remission, or return to normal.

I am trying to focus on just finding my happy medium. Where I don't over do it and leave myself completely useless, and not doing too much in hopes that I won't be uncomfortable.

This morning we went to my niece's soccer game. I had to walk a long way from the car, carrying a fold up chair and blanket, and sit in the cold, and then walk back carrying the chair and blanket again. It amazed me that everyone else there seemed to be completely able to do this, even people much older than me. And for me, that used up all my strength, and made my arm get very stiff. I came home and took a baclofen and a short nap (while my legs were having myoclonic jerks) So I'm glad I went and saw my niece. And I didn't try to tough it out through the rest of the day without my meds and a nap.

I guess this is just how I need to be from now on. Ignore the feelings we always have that, like you said, we can't seem to explain to others. But, take a break when I need to, and don't feel guilty about it.

 

[olly]

Hi wendy,i can't really add much else to what has been said.
Mike is sooo spot on in his replies.........in fact we are so alike its freaky lol.
I'm slowing down to the point of stopping now,going out for the day as I did today is too much even when sat down most of the time.....right now I am totally crippled and exhausted.

My attempt to describe the pain would be....in my legs its like there being rung out like a wet dishcloth while being stretched with a good dose of soreness thrown in.......yep,i think that's accurate enough.

 

[AKmom]

Mike, your #1 paragraph in post 10 reminds me of the saying: "What doesn't kill you only makes you stronger". The strength we have is not a physical strength, rather a stronger constitution to be overcomers despite our disease. As you said, the disease will be there, and sometimes will progress or plateau or even improve slightly on occasions for some reason or another. But by keeping a positive attitude in the mist of all this pain and woe, I think those are the ones that will survive this disease the best and be inspirations to others, as well as have a productive life.

I usually describe my pain as the stiffness is like a rubber band on a wind up toy airplane that is wound up so tight that it has knots on top of knots, and just as you get to the place where it cannot be wound any tighter without breaking, that is when I have cramping pain that seers like a knife and will leave the muscle painful and sometimes inflamed to the touch for days. Most likely due to injury. I hardly get to that point since I have upped the baclofen, thus now I have a continual ache, like when you have over exercised a muscle. These pains are body wide now. The worst is the legs, shoulders, neck, back and occasionally my abdomen and chest. My hands and feet have calmed down, but there is a little atrophy in them. They also have a tendency to pull inward and my fingers and toes curl down. I take baclofen during the day and night, tizanidine at night, but on occasions where I need to settle down the cramping point, I will take one of those during the day if baclofen didn't work. I take valium when the agony of the night gets too much to handle. Norco and Ultram are reserved for residual pain that is over 7 on the pain scale. I am use to staying at a 6/7 on the pain scale as a normal existence. Anything higher, I start yelling at people. I don't like that (neither do they) so I have learned to recognize when I become impatient and start yelling, I need to take a little extra something to bring the pain back down. This only happens when I have been working or doing something outside the house that exhausts or stresses me.

 

[IhavePLS]

Oh Wendy! Your comments about the soccer game brought tears to me eyes. I don't know how many times I've looked out my window, only to watch persons who are so much older than I navigate everything so much more easily. So much of what you say strikes at the core of everything I think and feel about this horrendous disease.

Wendy, most unfortunately, it is how you will need to be. Just accept it, and there will be more peace.

And Wendy, as much as I can try to give you advice --- I, too, have the same physical challenges, the very same issues of acceptance, the same concerns about what people think about me, the same everything that you think and feel. It is so very hard to understand, so hard to interpret, and so very hard to accept.

And so.....all I can say for now is: "God bless you" -- and I pray that you'll be accepting of your circumstances - whatever they may be on a day-to-day basis.

AKMom and Olly -- thanks so much for YOUR support and understanding. As the real experts in this forum, I wish both of you all good health!

Mike

 

[Tokahfang]

I will put a few posts in this thread, spaced out by a few hours. (My ride shows up in 15 minutes!) The first is an answer to "How can I be spastic and so weak?"

For today, I have crafted my most down to earth, least technical analogy for spasticity yet. I think you guys will like this one. I simplify a lot nuance out at various points, since this is supposed to be easy to understand for those who have no understanding of neurology at all. It might be helpful for explaining to noisome family members and the like.

Our most obvious movements are basically two muscles at a joint. Usually I go for the bicep and tricep, lots of people know where those are in the body. But pick any major, simple joint you want. To bend the joint, the inner muscle gets shorter, the outer one gets longer. To extend the limb, the opposite happens - the outer one shortens, the inner one lengthens.

So a way to think about spasticity is this. Your brain is like a mom yelling at her kids Andy and Betty playing on a really heavy seesaw. They don't communicate with each other, she needs to tell each of them what to do. For Betty's to get her end of the seesaw down to the ground, Andy needs to help push his end up in the air. If Betty wants to get her end up, Andy needs to get his end down. Mom coordinates this by giving commands: "Betty, push up! Andy, stop pushing up and lean down!" The see saw goes back and forth rythmically or not, as desired. They can even hold it balanced if they are careful and coordinated.

In spasticity, Mom is a really, really terrible communicator. Her speech comes out more like, "Betty go up, go down, go up! Andy go down, go down, go down! Up down, someone go up! Down would be great! More up more down!" The kids on the seesaw (or your muscles, in this case) get some of the right commands, but lots of extra contradictory commands, too.

So you try to move your arm. Your bicep gets the "get shorter, curl up" message fine, but the tricep is hearing the crazy mother. "Get longer, longer, shorter, longer, longer, shorter!" Your bicep tries to do it's thing, but just like with a seesaw, how far it can go is just as limited by the other side.

This is why spasticity makes you so stiff, why it can cause deep muscle aches, etc. Both sides of the seesaw are trying to push down to the ground, or up to the sky, at the same time to some degree. It is also what makes us trip and fall - when the brain (mom) realizes the right thing isn't happening it pushes more and more yelling at one side till it suddenly wins. So just like kids wrestling, then one lets go, once it manages to override the spasticity, it happens all at once and knocks you to the ground.

In the meantime, although it isn't proper, controllable strength, being stiff can work for you. If you plan around your seesaw being stuck neither quite up or down, you can use that to support yourself with a limb you don't quite control right. How each person's spasticity works out is a bit luck of the draw, some people have very inconvenient stiffness, for some it is a quite convenient kind.

Strength, real strength, requires clear neurological control. You can't have that with mom screaming crazy things, so spasticity really is a form of weakness. It is just an odd form of weakness, it isn't what you think of at first. "Flaccid" is what the most traditional form of weakness is called.