stiffness

Status
Not open for further replies.

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Could people please comment on their experiences with "stiffness"? Zaphoon, I think you recently mentioned it, and I know there were a few others in the past. It doesn't seem like stiffness is an issue for many here. Stiffness is a big deal for me, but when I say that I am stiff, I mean that my muscles are extremely tight (and sore also). Is that how any of you who experience stiffness would describe it?

Thanks-

Lydia
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Lydia,

I have been as stiff as a board at times. I sort of looked past the legs getting weak and my right arm getting weak but when I could hardly get out of bed because of stiffness or put on clothes, dry myself off from a shower, I took second thought.

The stiffness was very bad for a few months straight in my lower back, neck and legs. Recently, it has let up a bit and it is not as tough to get out of bed, put on clothes, etc. In one of my threads, I asked if anyone had experienced such a let up in stiffness. It didn't get much response which leads me to believe no one had any such let up.

Zaphoon
 

sukilou

Active member
Joined
Sep 12, 2008
Messages
63
Reason
PALS
Diagnosis
09/2008
Country
US
State
Or
City
Troutdale
Hi Lydia and Zaphoon! I've been wanting to respond to Z's question about spasticity, and I'm glad that you have also brought up the subject of stiffness and sore muscles.

My recent diagnosed is MND, probable ALS, and I'm awaiting a second opinion in Nov at an ALS Center. Before I realized that my many falls were due to muscle weakness, I had been experiencing muscle stiffness in my legs, arms and hands, along with spasms, cramps and twitches. I thought it was arthritis (I'm 64), but in May, 08, my legs started becoming much more stiff. I would describe it as "a walking on stilts feeling." My neuro told me that it was spasticity. The strange thing about it is that when I first get up in morning my legs are weak and wobbly, but no stiffness. After about 15 minutes the stiffness sets in and progresses as the day goes on. I walk with a cane/walker, and my balance is awful. My leg muscles are very sore and ache, and also my neck, arms and hands. If I rest during the day laying down flat on my back, when I first get up I have some relief before the cramps and stiffness set in again. If I stand in one place more than a couple of minutes, my legs "freeze up" and I have to be very careful when I start to move so I don't fall. And going up stairs is a workout--I have to pull myself up with my arms stair by stair hanging on the railing. And it's the same going down.

This is probably more info than you asked for, but it feels good to talk with you all and share. My neuro was thinking PLS for awhile until the foot and hand muscle atrophy became apparent, and the EMG showed many abnormalities/positive waves in my back, arms, hands, legs and feet--I meet the diagnosed criteria for "Probable ALS." Lonna
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
I have replied before to someone about this....
I use my static bike to help with stiffness, it really does give me more mobility...I can lift my leg higher to get into the car etc...I also swim, with a life preserver for safety, that helps a great deal for over all stiffness..
saw my neuro a couple of days ago and he has given me Baclofen...which he gave me months ago, but I did not take...somebody ( a doctor) told me not to, but I cant remember why...brain was in a fog, having just been diagnosed!.....but I am now taking it, and it also seems to work....only been taking it 2 days and noticed an immediate improvement...lots of posts on the forum about Baclofen
 

awieleba

Very helpful member
Joined
Apr 28, 2008
Messages
1,023
Country
US
State
michigan
City
oakland twp
my muscles ache and hurt alot. It depends on what I do. It is really bad in my neck and back. MY legs are weak but my thighs feel tight. I have to do a lot of stretching before I get out of bed. I am getting use to just having muscle pain all the time. I take alot of motrin, Idont have a choice with 3 young kids....
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
City
buffalo
Hello again,

Thank you all for your descriptions. I am really trying to figure out if I am using the "right" language to describe what I feel. I see new neuro in December and want to be ready. When I say stiffness, it is always linked with soreness. My leg muscles feel like I overdid it physically...sore then stiff or stiff then sore. I don't know if one comes before the other. They are always together. I know that when I first saw doctor, I described this as feeling wore out, beat. Not what I really meant. So that is why I am working on language.

Jennifer, when you say you can lift your leg higher to get in the car...it sounds like you mean your range of motion has improved a little. And Z, you said something about toweling off-that also suggested range of motion. Would you say your stiffness is impacting your range of motion? I never thought about it that way, if that is what you are saying? I do NOT have range of motion issues except for a lot of difficulty getting into and out of jackets, but I have had that problem for years-long before any of this craziness began (I actually avoid doing that in public I look so absurd).

Sukilou, your description sounds like mine. As the day progresses, I also get "stiffer" and sorer. When this first began the stiffness and soreness showed up around 7pm or so, then around 4pm, then around 1pm, and now within a few hours of getting up (about a 9, possible 12 month progression). I see it progressing, whatever this is, to within minutes of getting up. Did it start that way for you? My balance also becomes worse as the stiffness & soreness set in. I feel like a slight nudge would send me flying as it is too difficult to compensate. Sidestepping my cats is very difficult. I swear they are trying to kill me:-D

I have heard that spasticity (if that is what you have) can help with pseudo-strength. Your legs are weak but then the spasticity can hold you up, so to speak. If you take medicine for the stiffness, suddenly you can experience too much weakness, because the stiffness isn't there to help support you (even though the weakness was always there). Olly/Caroline is very helpful at describing spasticity. I am hoping the new neuro will help me out with this. I think I am at the mild end of the spastic continuum and he is a movement disorder specialist and spasticity is something he treats.

But Sukilou, I have one difference. If I sit down or lie down to rest or after a night's sleep, when I get up I am very stiff as well. But I think it is a different sort of stiffness then what I experience worsening during the day. A stronger stiffness, if that makes sense. It causes me to walk funny (side to side troll like gait) but passes within 15 minutes or so. But it feels similar to the other stiffness I feel. I can't make sense of this.

Thanks again

Lydia
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
Lydia...you are right in assuming that my range of motions is slightly improved when I excercise...and right that my legs feel a bit weeker since taking the baclofen, due to , as you say, the stiffness may have been helping to support me. It is early days with the Baclofen so I am reserving judgment on it. My heuro said it might help with my swallowing and speech...I have bulbar onset...and the speech thing is the most depressing thing at the moment but I am waiting to see some improvement with that. I too have slight issues with my balance now...I am really afraid when in a crowd, that someone might just blow me over as I cannot deal with even slight sideways, unexpected moves. My legs are stiff when I wake up and I need to stretch a lot before attempting to get out of bed...but I do feel that is slightly improved with the baclofen..albeit only 2 days worth. I guess it is the same with all medications...you have to try to work out what is best for you...2 doctors have all but MADE me try anti depressants...I did, for a couple of days, and one for a couple of weeks...but I KNOW I am better without the damn things, but others swear by them, likewise with Rulutek...I would not be without it, but others cannot tolerate it.. This illness is so individual.
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Lydia,

The muscle tightness does affect range of motion but so will weakness.

There are times when I cannot lift my legs while in a sitting position. To raise them, I have to lift them with my hands. To get my legs in a low sitting car, I sometimes have to use my hands to lift them as well.

My stiffness has been coming and going lately which really has me baffled. It was on me solid for about 3 months and then, Poof! It went away for a while. Now, its there in the mornings to varying degrees and changes throughout the day as well.

Zaphoon
 
Status
Not open for further replies.
Top