The Ongoing Pain Question?

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kevinw

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I think I probably know there is no good answer to these questions, but I have read a lot of threads regarding MND and pain. I recall reading in some the threads that the feeling of pain has nothing to do with any motor nueron condition. Now, I might just be missing something but how can someone have extremely stiff or fatigued muscles and not have pain and pulled muscles by the end of the work day?

Which brings me to the next even harder question of, when can one tell when it's just too much? I mean, when you try to make work as comfortable as possible but your legs are so exhausted and sore by the end of the day you are just recovering for the next day. It's a fine line of work ethics & obligation "verses" comfort & quaility of life outside of work.

Oh well, I've rambled on enough.....it's just one of things of trying to sort it all out. :-?
 

sral

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It's funny. They say that there is no pain associated with ALS and PLS, but my mom experiences alot of pain. Her legs and joints are in constant pain. I think the pain is actually different than the fatigue pain you describe because it's there even in the morning.

When doing some web searches, I was able to find pain as a symptom of PLS and it is due mainly to spasms I guess.

As what can be done about it, I really don't know. If you ask the neuros, they'll tell you it doesn't exist because it's not part of the disease. It's a no win situation.
 

kevinw

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yea...i guess it is a "no win situation".....my neuro was at least compassionate about the pain and explained it to my wife and i as the feeling of walking in water or molasses all day and pulling muscles (she also increased my zanaflex and the pt said to keep doing the stretches). i guess it's just hard for me to get my mind around the thought that you could have all these problems with the muscles, still try to have a normal day, and not expect to have pain from it. :confused: i get a lot of my pain in my upper legs (the front and back).....and it feels like it's from strained/pulled muscles, but by the end of the day they feel like they could just "buckle" from under me.

enough to drive you crazy trying to figure out a pattern.......:-D
 

Geo

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Kevin if you continue to work you may Buckle under and fall at some point . Get real and face reality that if you have PLS you'll eventually have to quit or they'll fire you like Happened to me . Of course they Have to take you back But at drastically reduced hours . Some do have Pain with PLS Some dont .Dont let your doc. tell what he hasnt got a clue on . Because he hasnt got a clue why we have what we have ,it defies all logic
All the Diagnostics says we should be fine . Evidently you havent had it a long time . Geo
 

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Pain/No Pain

I don't have pain per se. As long as I sit at my computer and do nothing all day, I'm okay. Most of the pain I experience comes in bed at night when the cramps/spasms start. Sometimes I can get through them by stretching, but sometimes they're in a place I can't stretch. Like lately I've been getting them on the outside of my leg beginning at the ankle and going up. Then my husband applies some Ben Gay and it helps a lot.

What I experience most (if not just sitting around doing nothing) is pure and utter exhaustion. My legs are stiff as boards and I just fatigue very quickly when every fiber of my being is just trying doing everything possible to keep my balance.

The pain I've got at this very moment is my feet are absolutely killing me. Been doing laundry today and I can only stand for a few minutes folding clothes as my feet are just screaming out in pain. But I don't think that has anything to do with the PLS.:-?
 

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kevinw

sadly pain is a issue for most people with pls. this is caused by 2 reasons.
firstly muscle spasms and muscle fatigue from over working the already damaged muscles. someone here said if they sat and did nothing all day they would not be in as much pain,this is the same for me and i would call this pain muscle fatigue due to my weak muscles. i am however one of those people who can not sit about doing nothing so i am my worst enemy lol. spasms are different, sometimes i am so crippled i can not walk and my mum will say what have i been doing, i say nothing . with spasms/pain no amount of rest helps, only my baclofen can keep the pain/spasm under control.if the spasms are bad in my groin i have to go to the toilet more as they effect the bladder.
also like you my legs feel heavy and it feels like you are trying to walk through water, its like when you try to move your legs theres an invisiable force field forcing them back.
when working causes a deterioration in your health and home life it is time to stop, it is hard but gives you a better quality of life.
take good care
caroline:-D
 

kevinw

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Hello everybody...I hope everyone had a nice weekend. I wanted to thank everyone for their replies. I think I started this tread because I could not sort all these thoughts and running thru my mind and it's nice to hear input (or confirmation).

Geo: I completely understand the "buckle" feeling, I get this feeling a lot in the morning and evening. It almost feels like trying to walk like the scarecrow in the Wizard of Oz :). Strange to have something feel so tight & tense, yet buckle under you. One good thing I have going for me is my ALS specialist is very much on my side and she stated she would support anything I wanted to do and to just call her with any problems or questions. As far as having it for a long time, I can only really go back about a year & a half. Even with my walking & tripping problems last year I never, never remember the aching/pulled muscle pain I have every evening now.

Whitsend: You sound like a mirror image of my day (except the feet thing) :). As I sit here at my desk on a Monday I feel no pain in my legs, on tense muscles while sitting and what I guess I'll call "woobly" walking? My main problem with pain comes in the evening while watching tv or trying to get to sleep. That's when the aching pain, cramps, and spasms drive me crazy (I am on zanaflex in the morning & at night, but a low dose at this point that is slowly being increased).

olly: LOL...."overworking & worst enemy". I understand 100% it is very hard to stay within my limitations. First of all I don't even think I know what my limitations are yet, but I sure do know when I have exceeded them.

I hope everyone is doing well. I am sure there are other "more fun" forums we want to be in rather than searching for answers here, but I thank everyone for sharing ideas and info.
 

Geo

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Kevin Beleive it or not ,this place is a Gold mine .It first gives those who have this affliction a place to come when you feel alone and getting no answers from the prfessionals who should be helping . If those who come here share their thaughts at least thats a start . then we go from there to what we have in common as far as the disease we have . The real shame is those who come here and only take and do not share . Many years ago i belonged to a group that some only rip apart what others try to help . This is not support ,rather negativity . Im here to try and help ,maybe not alot some times ,but i'll try to help those who want it . God Bless Geo
 

Geo

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You sound alot like myself at one point . Keep the Doc. Sounds like a compassionate person .Geo
 

olly

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i completely agree with geo. i too used to post on the forum he mentioned but this one is by far the best. if you look back in the threads we have exchanged lots of info, had some really good chats. we need to get this pls forum back to full swing.
i must admit i have not been posting much lately due to illness,personal, family problems. but will try to post more ofton again.
take care.
caroline:-D
 

kevinw

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Geo, trust me when I say that your past threads are very, very helpful. This place really seems like a gold mine for information and a place to visit to help put some reality to what is going on in our bodies. I have only found one other forum that I was not very impressed with, and it was after I found this one (something just seems comfortable about this one). Ohhh, and to hear that I may sound like you at one point is a very good thing, because when you feel like your lost in the middle of the scale between "normal & worst case" it's nice to know that I might be able to continue and be active and productive. Again your insights and comments are more valuable to others than you may think.

Olly, I am so sorry to hear that you have all those issues going on at home. I hope things are getting better each day. On another note, I do agree that this forum is most likely the best there is. I look forward to each day checking the new messages. Well I guess I've gone on long enough, again I hope you are doing well.
 

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Hi Kevin. Thanks for the vote of confidence. We do have a special place here, don't you think?
lost in the middle of the scale between "normal & worst case"
Your statement is so on-target! You've got a great way with words! :-D
 

kevinw

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Thank you CindyM, and from my point of view you also have a way with words. Your posts in all the "sub-groups" that I've read are always so compassionate and calming. Although I seem to always post in the PLS group I do keep up with the other threads and your insight is something to admire.
 

sral

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Thanks all your insight.

In keeping with the thread on pain, were anyone's visible symptoms (i.e. tripping or falling etc) preceeded by pain?

My mom had pain for about 4-6 months in both her knees before she had difficulty with the stairs. And she had pain in both her legs about 4-6 months before she started noticing them stiff and had abnormal gait.
 

kevinw

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sral......I would have to say that my balance and tripping started first throughout last year. Also, the way I walked seemed to change throughout the year (scuffing my left foot as I walked). Something I remember is my wife saying I was walking with "heavy feet". But what was happening was my feet were like flopping as I stepped and it made a "flopping/slapping" noise when they landed. My left foot would also feel like it was getting stuck behind me when it was it's turn to step forward. Then in the fall/winter I started having cramping & pulled muscle pain (but very mild). Now it seems the aching pain is every evening after a full day. Also, I am noticing more often a "bouncing" feeling when I come to a stop.

I guess what I am saying is that "everything in my legs seemed to stop working like it should in one motion", it felt like I was becoming disconnect with my lower body and they just did what they wanted when I was walking.

Hope this helps (a little), but mine didn't start with pain, just the feeling like I was becoming uncoordinated. :?
 
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