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Sophia

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CALS
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I have been reading the posts for a while now but have not written before. I am currently caring for my Mom who was diagnosed with ALS in June 08. She began falling down about May 07 and now her legs are completely immobile. Mom is not very computer knowledgable so she asked me to ask a question for her. She experiences a LOT of pain in her legs and back. She calls it "nerve" pain and says is burns and feels like her legs are on fire. She was told by her doctor that "there is no pain with ALS" so she wonders if what she is experiencing is from something else or if her doctor was wrong. Sometimes her feet and legs hurt so much she can't stand the covers on them. It's like the nerves are super sensitive although she can't move them. It seems to be worse if they get warm. Thanks for helping us with this, I just don't know what to tell her.
 

Al

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Hi Sophia. Is your mom diabetic? The burning sensation sounds more like a diabetic neuropathy than an ALS symptom. Sensory symptoms are not normally a part of ALS. I'd get the doc to have a look at her.

AL.
 

Sophia

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CALS
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06/2008
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Hi Al: No my Mom is not diabetic. She has mentioned it to her doctor but I don't think the doctor knows much either. We are going to the ALS Clinic in a couple of weeks so maybe the doctor there will have some insight. Thanks for your response. Just so I know what to tell her, are you saying that there is no pain with ALS or that there is no pain like the pain she is describing. I know everyone is different but any information would be helpful regarding pain expectations.
 

Al

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Pains other than cramp pain in the muscles are not usually a symptom in early ALS.

AL.
 

cukita99

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el paso
hi sophia,
i have als and i do have the same pain as your mom except that mine is worst when cold. when i ask my doctor he said there was nothing he could do, but he did give me hydroconde, it helps me to sleep but doesnt help the pain. ive just learn to deal with it.
 

andyvaughn

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Sophia,
The common thought is that there is no pain with ALS - and that typically seems to be the case. However, current research is starting to understand that is not always true. There is a thread on PLM discussing pain and ALS, many patients have quite severe pain and have some good ideas how they have combatted it. My husband has a tremendous amount of pain also, in his case it generally seems to be related to the clonus, or tightness, of his muscles. The best way I can describe it is it as if his entire body is locked into a cramp all the time. He is on a combination of medications to combat this, baclofen being amongst the most helpful. I also took him to a pain managment specialist, who incidentally sees several ALS patients with intractable pain. The pain mgmt doc put him on neurontin, which has been moderately helpful as well. Jim also takes vicodin and ativan when the pain is very severe.
If you can, ask for a referral to a pain management doc who has some experience with neurological disorders and pain. Hopefully they can establish a drug cocktail that will help your mother be comfortable. ALS is miserable enough without being in chronic pain.
Andrea - wife of PALS Jim.
 

Sophia

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CALS
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Thanks

Thank you all for your input. I will be asking the doctor about pain management next time I go with my Mom. She does take pain medication for other things......she has spinal stenosis, osteoperosis, heart problems and takes the medication when the pain gets really bad although she doesn't like taking them. Thanks again for the recommendations and concern from all of you. It seems now that whenever I have to transfer her without the overhead sling it hurts her a lot. Her lower body is such a dead weight now I have to hold her tightly so she doesn't slip through my arms and I can feel her back "clicking". Her arms are also getting weaker so she can't hold onto me like she used to. I only transfer like that when we are going out as I don't have a vehicle that can accomodate a wheelchair. Guess that's next on the list of things to search for!
 

afterhoursauto

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ma
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taunton
Hi Sophia,

I am also new to this I have done a lot of reading not posting. I can tell you that My boss has ALS going on 6yrs and he does have the same pain that your mom says she has he explains it as something munching on his leg especially after he gets out of the shower. Cream seams to subside it and he does tell me he is in a lot of pain mostly his back and legs also. Just trying to help.
 

tracker

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PALS
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11/2008
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indiana
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mooresville
Tracker

Sophia, You want to keep an open mind about the responses you receive. The bottom line is that every person is affected differently, so nothing is etched in stone. I was recently diagnosed with ALS, after a second opinion. I know of two other individuals that have or had ALS and had no pain. In my case the pain is actually unbelievable 24-7. My neurologist has had me try many things and we are on oxyicotin three times a day now. I was a police officer and tell people I find the oxyicotin over-rated by dope heads, as it is having little effect on me. I ache all over and have had the burning sensation in my arms, so I know what you are talking about. Take Care.

Mike
 

joelc

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Mike, I am sorry to hear about your pain and hope you experience what I did. As I progressed and the muscles atrophied the pain also quit, I still have some pain but very little in comparison to what it used to be like.
 

shannonme

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CALS
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OR
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Portland
Hi Sophia-

My mom had similar pain. It was awful! I couldn't touch her without inflicting tremendous pain. She took Baclofen and pain meds to help manage it. Your mom needs whatever it takes to make her comfortable. Blessings to you both!

Shannon
 

Bujy

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Vancouver
Interesting.. my MIL has needle like pain in her legs sometimes too. And her legs have long since been immobile. It wakes her up sometimes and is worse when she's cold.

I wonder if there are other diseases that ALS makes you prone to? We have our next ALS appointment in May. The GP has given us something for it until.

I find that our family Dr is afraid to treat my MIL for anything. He always refers on to the ALS guy.

You can always call the Dr's office and ask, eh?
 

Al

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Hi Bujy. Have you mentioned to your GP that he can go to the ALS Canada website and download a Physicians Guide to ALS? Most GP's don't know a lot about ALS and the Guide can really help you and them. www.als.ca

AL.
 

kylisa

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My mother is experiencing some nerve pain and the have her on Lortab and Neurontin.
 
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