Pain ?

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handinhand

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02/2009
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Colorado
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I have been told that there is not much pain with this terrible disease? I have told my Dr. and Physical Therapist about the pain. They say most likely it is not connected with ALS ? I have pain that has been bothering me every sense this whole thing started... It is getting worse every week. Does anyone wake up after a nights sleep in pain ,terrible pain... I get up and take 2 x strength tylanol. It is a throbbing pain all over. I can hardly walk. It takes about an hour or two for the pain to stop..... I wonder why it has never been like this before? It happened just every once in a while.. Now at least three times a week...:sad:
 
I am sorry to hear you have such pain!

Because ALS deals with motor neuron vice sensory neuron death, most people presume you wouldn't experience pain. I have pain from cramps and stiffness in my hands, legs, feet and shoulders. I've been told I have PLS.

There are all sorts of pains that can come and go with ALS with atrophy and weight loss. For example, some people have complained of pain when they lose the muscle and fat on their rear; it becomes difficult to sit for any length of time.

I'm sure others will respond with their experiences in pain shortly.

Zaphoon
 
There are many members of this forum who will tell you they have pain..the doctors are talking ####. I have extreme pain, and not from cramp. It started in my upper arm, felt like someone had stabbed me and was twisting the knife and the pain was 24/7, only reducing if I kept my arm extremely still. Then my hands are curling, extreme pain if you try to make them flat as they should be. At night, I manage to sleep on my side, but after a few hours the hip that is on the top is extremely painful. My doctors have given me prescription painkillers. Talk to someone and get some pain management. As far as I am concerned extreme pain is part of this dreadfull disease.
 
hi handinhand.
i second what jennifer said,doctors know nothing compaired to us living with mnd.

pain tends to come from umn symptoms like spasms,cramps .
it can also be from muscle loss like zaphoon said,especially in the hands or joints.

i too wake up in pain that is more severe in the morning along with stiffness.
we are laying in bed ofton in one position for long periods of time so morning pain and stiffness is understandable.
before getting out of bed i stretch my limbs and back ect for a while and this can help.
also a good matress will help like a memory foam one.

are you on baclofen?
if spasms or cramps are the cause of your pain baclofen could help.
 
I'm with Jennifer...
My first manifestation of ALS was a stabbing, sharp pain in my R arm.
Numerous doctors were telling me that pain is not a part of ALS. Wrong!
I take pain medication (vicodin) and get some relief from heating pad.
Cookie
 
Thanks

I am taking notes...LOL I will ask my Doc for some good pain meds and I am going to get the heating pad out pronto... I do stretch and walk around for a while trying to get things circulating. I also take a nice warm bath. So after about two hours of that I get to try and get some food that will go down easy. What a fun way to start my day. After all that I do go outside and watch the birds.. Then I feel better.. Take care and Thanks to all.... Now I don't feel like I'm making things up.. Not hardly. This pain is so bad that it makes me cry. I am usually able to buck up and take a little pain.. Not with this.:sad: Lin
 
Hi,

My husband has been living with ALS for 2 years. In the last 6 months he's been complaining of terrible back pain. Like you, I thought this disease didn't produce any type of horrible pain like he's going thru. When he awakes in the morning, his back is in so much pain he can hardly move. I have to either put heat on his lower back or give him a very deep massage. Today, especially, he complained most of the day of a sharp pain in his back going down his leg. We've had MRI's on his spine and it didn't show anything abnormal. He swears some days that he doesn't have ALS, but has a tumor in his back causing him all this pain and everything else. They haven't prescribed him anything for the back pain. What's worse is that after he has a bowel movement, some of the pain in his lower back lessens. That's where I don't understand the connection with ALS and this back pain. Does anyone else have similiar complaints of back pain?
 
My husband also has severe back pain. He has disk problems that showed up on MRI, and has had problems with it for years, but the ALS has seemed to make it so much worse. He takes both morphine and percoset for pain, but it doesnt help much. We are waiting for the VA to set up physical therapy for him to see if we can get some relief, and I am going to take him to a back specialist. He says that his back is what is going to confine him to a wheelchair, not the ALS. Lori
 
I think its a play on words.

ALS itself is not painful.

But it can be the cause of pain.

A misfired signal to muscles that respond by twisting you in knots - painful.

A loss of balance, falling down. Gravity sucks. Leaves bruises and pain.


Thats the way I think of it.

Glen
 
I have been wondering about a different aspect of pain. For years, whenever I went to the dentist the nerves did not go to sleep with the injection and it hurt far more than it should have hurt in spite of repeated injections. Could it be that our nerves are unusually alive before they come unusually dead? >That we feel pain in those nerves more than people who do not go on to get ALS?
 
Hi Irismarie, I'm a dentist and I would say no. I did encounter the rare patient in my 30 years of practice that didn't respond to anesthetic, but they did not develope any neuron motor disease in later years that I know of. My friend with suspected ALS, has not had any problems getting numb when I have treated him. My best guess is coincidence.
 
THank you for your response....I always felt so sorry for the dentists.........
 
The terrible pain that I was having in my right leg, for the last year has bothered me less the last month. Now I'm worried about not having the pain? I know that sounds silly,but when you stop having pain does it mean that something is not functioning in my leg that should be? Pain or no pain the big question? L
 
My husband has had pain from the beginning of this twisted journey. He is wheelchair bound now and sleeps in a hospital bed. He has horrible back pain in the mornings. I adjust his head and feet elevations and angles and try to roll him over during the nights. He woke up this morning with his toes in excruciating pain. God bless him.
 
Mum has a lot of pain in her neck at the moment - she is in hospital now and they have put her on Balcofen for the muscle spasms. I cant see why their wouldn't be pain, just muscle pain s they stretch in ways they may not have before due to the weakness. Mum was getting the occasional joint pain in knees as well, though would only last 10-15 minutes. When she went into hospital, she was complaining of pain in her thigh muscle, so it may have been stretched when we moved her...many maybes, but I cant see their being No pain with ALS.
 
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