Status
Not open for further replies.
G

Guest

Guest
Fatigue of a muscle:
•Physiology. The decreased capacity or complete inability of an organism, an organ, or a part to function normally because of excessive stimulation or prolonged exertion.

This is what usually has been happening to me for years now. My muscle tone had been tight from chronic continual spaticity and in turn I would feel fatigued.

Weakness of muscle:
the state or quality of being weak; lack of strength, firmness, vigor, or the like; feebleness.

This is what I have been feeling the past few months. Since baclofen, my muscles are no longer taunt (unless I don't take it then they are in continual spaticity and spasms and do not relax), thus leaving my mushy muscles with no strength in them what so ever.

I have lost alot in the past few months. The ability to open anything with my hands...including a water bottle. The ability to get up off the toilet without pulling myself to a standing position using a near by hamper (this will have to change to a bar as its not very stable, plus my arms are getting weak). The ability to walk longer than 5 minutes without sending my legs and back into fits of spasms and weakness that my knees start to buckle. The ability to cook my family a meal without it coming premade in a box already. The ability to drive distances beyond 5 miles. The ability to walk without a shuffle even if it was just for a short time.

I guess I am fishing for others who know the difference between the two. My hubby is just now understanding there is a difference, even though he continues to think that I should do a whole lot more than I am. I am trying to do more...but its like I am soooo weak! Its like I am willing but this body screams at me to lay down because it cannot take anymore. Does anyone out there feel like this too?

Speaking of laying down...this seems to bring up another symptom or problem that I am not sure what to make of it. Pain is something that I have delt with for years also but now it seems to have changed. In the beginning the pain was mainly when I had execised and over did (easy for me to do even then). The pain now is constant dull achy in muscle but also when I lay down for any length of time, its like the joints all stiffen within minutes of laying down and when I move them they hurt up to a scale of 9 and the joints are hard to move, not just because of pain but it is like they get stuck briefly, like a tick then they will move. Or like with my hands, I will have to bend my wrist down in order to unstick my hand/finger joints at the knuckles. The joints hurt constantly at a 7 when I am up and moving. There is no sign of arthritis and the past RA blood works have always been normal. Its almost as if all the ligaments and tendons are inflamed or something. No swelling, or heat, or redness...just pain on the sides of the joints. Does anyone else have this problem?

Now here is the one symptom that has me somewhat concerned as it is only brought to my attention since December. A othopedic surgeon pointed it out. She showed me an area on my left thumb that had muscle wasting. I noticed it only on that thumb. Then while I was on my cruise earlier this month...I noticed that my right thumb now has the same indentation. So is this something I should be concerned about? I plan on mentioning it to my gp doc when I go in next weak for my disease management appointment. I am wondering if its time to get another EMG? It was Nov. of 09 when I had my last one.

Ok thanks all for reading and listening. Sometimes I just need to run this stuff out of my brain to someone who might know what I am talking about. It is hard to explain it to those who haven't a clue to what it might feel like and get feed back that is helpful.
 
Last edited:
G

Guest

Guest
hi joyce.

well,theres so many ways to interpret fatigue and weakness depending on whats going on.

fatigue..............yes i experience it after "over doing things"(not much for a "normal healthy"person) but very occasionally more so in the first few years of pls i have had what i call neurological fatigue.
this can come on for no reason and i can not physically move from my bed for upto a week and just sleep..............after physical symptoms are really bad,in the early years after i would be unable to walk at all for a week or two.
this is what first made them and me think ms but this time of fatigue caused by neurological damage can be seen in many neurological illnesses.

weakness.........this develops over time,many years but any sudden weakness should be brought to your neuros attention.............however after starting baclofen or increasing dosage it is not unusual to experience more weakness.
maybe you need to try and lower your dosage a bit and see if it helps,i am on a lower dosage now than i used to be.

i have stressed so so many times about pushing the body,learning from experience if your body is saying no then dont and rest.

if i sit down ten minutes my body goes stiff and i look like an 80yr old women trying to get up lol.
in the morning before getting out of bed its good to just lay there 10-20 minutes stretching and loosening up the joints.
yes my muscles have ached 24/7 for 11-12 yrs with pls............though your not completely aware your muscles are having a continuous work out with the spasms ........even when sat or lying down.

atrophy,that you may want to get checked.
after over a decade i do have small amounts of atrophy in the weakest areas........shoulders,ankles,feet,upper arms and left hand(though left hand is mainly i think because of my disabled arm i have had since a child)

i have brain fog now so i'm logging off,taken me half hour nearly to write this.
if ive missed something i'll get back to you.
but really everything you have mentioned is so me and so pls.

take care,caroline
 
G

Guest

Guest
Hey Joyce.
I think you really should have another EMG done. Sure with PLS you get wasteing from lack of use, but an indentation in your hand would be unusual , so, well worth getting it checked. There is certainly nothing to lose.

I get horrible sudden fatigue as well. This morning I had to go off to work without a shower, I could not face washing my hair cause my arms were like lead, I only had an hours work so that was fine (just used heaps of deoderant)! The baclofen can cause weak muscles as the stiffness in lessened , leaving some people feeling like they are made of Jelly.

I stopped taking Baclofen a month ago, just a trial, as i was feeling very weak getting up slopes and stairs. I always do have an issue as my weakness is in my hip area. I definitely do not feel quite so sluggish when out and about, but I was a bit stiff yesterday, so am going to start it again on a lower dose.

So back to the Dr you go, my dear.
Best wishes Aly
 
G

Guest

Guest
I definately can say the muscle wasting of my thumbs is not from lack of use! I use my hands so frequently as a photographer and its only been in this past 6 months that I have had problems with the thumbs themselves. With tearing all the ligaments in the right thumb last October, I would not have been suprized to see the wasting when they took the cast off a month later. But it didn't show up first on that side. It was my left thumb that it was first noted in.

I will most likely end up back at the neurologist here in AK. and get another EMG.

Thanks Caroline and Aly for your responses. I pray your days get better.
 
G

Guest

Guest
akmom..just know were your comin from....but al try looking on the bright side shall i?..al risk it for a biscuit......i can walk , sort of, thanks to the good old spasticity..get exercise while sitting down even!....ta to mr spaz..and that keeps the old arteries flowing with blood,,sitting too long, as you say does you in.so you get up and do something useful,,good for the mind..when tired, you enjoy a nice coffee, a newspaper and a cig..but dont sit to long....well thats all the good i can find....except maybe that our als friends have upper and lower neuron probs and our pma friends have lower motor probs we have um neuron probs...and i gotter say i will settle for that no doubts...and finally, its also good to have you pls ers back on the boards,,,were av u bin..loves johnny..
 
G

Guest

Guest
Good hearing from you Johnny. Not sure about the cig idea, but I am a nurse so I am obligated to sat tut tut! There I have said it.

You are right, when tired take a rest and enjoy it. When you have the energy go for it.

Joyce I am sorry you are so fatigued, I am soon to cook dinner and got thinking about you. It's hard for spouses to understand what neurological fatigue is like. Try and get him to give you a break, cook some dinners on the bad days. Sometimes I just sit down and say enough. I am lucky that my hubby understands. I just wish he could cook something other tthan wiener snitzel :). Well it could be worse, he may only be able to boil mince. That would be the pits.

Johnny. I have just developed a taste for apple cider, yum . Hey not sure why I am telling you that?

Love to you all.

Hubby is drugged up on narcotics, been asleep for hours, men and there inability to bare pain ho hum.
 
G

Guest

Guest
Hi Joyce. My hubby is still ambulatory but with weakness and fatigue. He was ALS diagnosed 3 years ago and has had slow progression. In this last year he is advised to balance activity with fatigue. He will work maybe 2 or 3 hours on accounting, and then has to take a nap. He can carry wood or shovel snow a little bit... maybe 10 minutes, but then has to go recline. He sweats profusely at the least amount of exertion. The neuro keeps pressing me to rocognize that he needs to have activity, but that he shouldn't push himself. I do know that with motor neuron disease, you shouldn't go to the gym and work out. Rick and I tried to play tennis a couple years ago. He used to be a tournament player. We decided to serve the ball TO each other, and return the ball TO each other, and maintain a volley just for fun. He couldn't even do that. The fast moving was something that he just couldn't accomplish, neither could he keep his balance. His knees get weak if he has to stand in line. He doesn't have any pain and never has, but that is one of the abnormal traits attributed to this disease. He explains that he feels stiff in his legs, but no pain. He has a parylized pointer finger and thumb on the same hand.... takes no meds. I hope this info helps you as you compare symptoms.
 
G

Guest

Guest
tonight I had a photo shoot I had to do. Ended up needing to do what is known as a poster shoot (I make posters for a local theatre) and the shot called for me to be above the subject. I am only 5 foot and the subject was close to six. So I had to get up on a chair. I knew it was going to be difficult as just to get my leg up off the floor and it took my son (I have to take at least one son with me when I work now) to help me get the stronger leg up, then it took a gigantic man to grab me under the arm pits and push me upward. Then once I got my balance (sort of), the big guy had to hold both my shoulders to keep me from falling over to take the shot. This all is difficult for me to accept as part of my life...but then I know it will be what it will be. Its not who I am. As long as I can still hold the camera, I will take pics.

Thanks all for your encouragements.
 
G

Guest

Guest
Yes; the Baclofin does crazy things to me also. I sometimes cannot tell if I am simply fatigued or it is the drug. I seem to have no stamina. And; I do not seem to be able to re-build strength.

Very frustrating; since I want to and need to get in better shape.

I find much of this very confusing. The Baclofin is perscribed as a 1-2 three times per day dosage....who knows what that means ? lol.
 
G

Guest

Guest
Bad Balance, often Baclofen is prescribed this way because the individual needs to
" fiddle around" to find the dose that most fits there condition. some people will find 1 tablet 3 x a day helps the spasticity, others will find 2 tablets more helpful. It's all about getting the balance correct between the spasticity and the belt to your stamina that it also seems to cause.

My neurologist said that sometimes it is the spasticity that keeps people on there feet, take it away and your limbs can turn to jelly. I found his explanation helpful.

It has a short half-life so taking it 3 x a day is a must if you are using it. Even breaking it up to 4 x a day ( keeping the dose the same) is Ok.

Cheers
Aly
 
G

Guest

Guest
bad balance..if you want to get fit..get of the baclofen...live with the stiffnes and manage it with light exercise...i read somewhere women are not as good as men in handling chronic pain..its just the way it is..now i dont know how bad spaz gets,can only speak for myself..manage the desease in a way that suits you, the individual..things aint gonna get better are they?..i have finished now...dont get any ideas that i know what am talking about,,ok?.....i sit down so much the armchair is bowing in the middle,,the missus has got me sitting on a giant sponge! and i thought she was concerend about my sore butt...nice to see use, to see use, nice, loves the pooler.
 
G

Guest

Guest
I am not the most consistant with taking meds in the afternoon. I was taking it 3 times a day at the beginning but now I take it 1 to 2 times a day depending on whats happening with my schedule. I will not take it if I have to drive somewhere, like last night. But I do take it at bedtime for sure. I took one this late morning because I could hardly walk, my legs were really stiff from yesterdays stunt. I could not sleep last night because of the pain in my legs from the over exursion of getting up on a chair 3 times and doing stairs down and up one time. Took me a long time (about 5 minutes) to get up the stairs but not as long going down.

Taking baclofen no longer makes me sleepy. But if I take a tinazidine, it will knock me on my butt! I take those usually at bedtime if I have done alot of exercise that day and I am really spasming.
 
G

Guest

Guest
al....careful with the scrumpy..it"ll scramble your brains...now i recomend 3 pints of scrumpy and a packet of crisps...salted....every thursday night..it"ll make a new woman of you....you will trip the lite fantastic when you get back from the boozer..loves johnny,
 
G

Guest

Guest
I am plastered after a small bottle. I went to a pub with my cousin in London last year. It was his cute little local. He ordered me a pint of Cider. Just about killed me. I certainly waddled home! No spasticity thats for sure, ( not that i have much anyway) Next time I come to Wales I will join you for a pint, and don't for one minute think I am kidding. I go to U k most years and often visit my old digs in Cardiff.

Bye Aly
 
G

Guest

Guest
hi all.

badbalance......i wrote you a reply on baclofen on the pals forum,hope it helps.

joyce.........i thought disuse atrophy meant atrophy in muscles no longer in use but thats not the case................it can be in weakened muscles that you still use.
i looked it up when i first noticed atrophy and found some neuro info on this.
if you use an area alot like your hands and you have spasticity/stiffness and weakness in them the mucles are not working to there full capacity thus over time atrophy can develop.
i too have the atrophy at the base of my left thumb but never give it a thought.
still,you should get an emg if it worries you........i have not bothered as i am now about 12yrs with pls.

aly lol, i used to drink 4pts of cider on a night out when i was younger...........can't stand the smell of it now.

finally johnny mate,i just think your fandabbydoubledozie and wish i could go on a bender with you and your mates............your posts brighten up my day.........dont ever change.

love to all.
caroline
 
Status
Not open for further replies.
Top