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bilphi

Member
Joined
Sep 16, 2007
Messages
17
Reason
PALS
Diagnosis
09/2004
Country
US
State
MN
City
ER
I was diagnosed with ALS in August of 2004. Recently my neuro changed the diagnosis to PLS.

For the last 3 years I have been experiencing tremendous muscle pain accompanied by cramps in my legs and feet as well as fasciculations in my calves.

My neuro won't diagnose anything for the muscle pain because he says ALS causes no pain. Does PLS?

The pain is severe normally and hardly bearable when I exert myself.

What medications can be prescribed to help with the pain?

Color me in pain.
 

AAA

Member
Joined
Feb 14, 2007
Messages
11
Reason
Lost a loved one
Diagnosis
11/2009
Country
US
State
AZ
City
Anthem
I keep stumping the neuro because of my pain. My neuro is finally sending me to a neuor muscle specialist at Barrows in AZ.

My first complaint when this all began was pain and it still my main complaint.
I take Darvocet or Precocet for the pain and I use Baclofen for the muscle spasms.
Sometimes heat will help with the cramps.

I am not my usual optimistic self anymore. The pain makes me crabby.

Angie in AZ
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Quinine and Baclofen usually help with muscle cramps/pain. Do you mean he won't prescribe anything for pain? If he won't, get a new doctor. That guy is a quack.
AL.
 

SDW

New member
Joined
May 16, 2007
Messages
1
Reason
DX UMND/PLS
Diagnosis
May 2007
Country
UK
State
n/a
City
Nottingham
Dear Bilphi,

I read your post with interest. I was recently (May, 2007) diagnosed with PLS. I have recently been experiencing exactly the symptoms you describe- intense muscle pain (particularly after exertion) and cramping and fasciculations. My cramp mainy effects my hands and underside of my feet and can sometimes last all day long. The fasciculations effect mainly my calves, shoulders and hands but are most prominent in my calves.

Quinine helps with cramping- especially night cramp. It sounds simple but I have found that taking a really hot bath sometimes slows down the fasciculations and helps with muscle pain.

I agree- MND is certainly not always a pain-free condition.

Good luck.
 

manfred

Member
Joined
May 15, 2007
Messages
29
Reason
PALS
Country
CA
State
quebec
City
pierrefonds
muscle spasms

HiAll,Regarding muscle spasms,magnesium,calcium and vitamin -E usually are pretty effective generally...dont know if ir works specifically for spasms caused due to this condition.My daughter takes both calcium and magnesium with Vitamin E..seems to help her.Manfred
 

Frizzel

Distinguished member
Joined
Mar 15, 2007
Messages
177
Reason
DX UMND/PLS
Diagnosis
03/2007
Country
US
State
WA
City
Vancouver
Pain with PLS

http://www.sp-foundation.org/articles-pain-print.htm

Copy and paste into your web browser. I also have tremdous pain from my muscles cramping, spasms that tighten up every part and don't stop until I lay in a pool of sweat limp and the muscles still tight and so on. I have had GBS in 1996 and have had PLS since 1998.

For me, hot soaks in the tub with Epsom Salts and then hot soaks with no salts, stretching....so on....I have over the years developed my own regime that has kept my body going. It's slowly shutting down and well....maybe I can suggest something that may help someone else.

Check it out if you'd like.

All the best!

Frizzel
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hey Frizzel! So good to see a post from you! hope you are doing well. Thanks for the link to the article on pain management. I've printed it out to keep for future reference. Cindy
 

kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
muscle pain

Hi,

Hi,

You didn't mention if you have limited mobility. Falling more & more I finally stopped doing activity likely to result in a tumble. Within 2 years I was either sitting in a chair or lying in bed 24/7. B4 was very physically active w/ horse/dogs/gerdening/etc. The muscles in feet, legs, arms & later pelvis became very painful. The ALS specialist I go to has so far only offered 10 gabapentin ( 400 mg ) a day for relief. I'm up to 6 but it is a dizzy time on this increased med.

I have a visiting massage therapist & brought up same subject to her esp. w/ feet since noticed toes were turning in to each other at night so long that I couldn't turn them out anymore--wondered if pain from that. She has worked on the tight muscles that cause that. It's working well but it is very painful. 3 appointments w/ her did more than 4 months of increasing meds. I can flex toes out from ankles now. There is less muscle pain from inside of thigha & hips. Everything is connected.

The months of toes going in at night & while sick in bed( 5 x 4 weeks ) had one set of muscles getting lengthened, opposite set tightened. I do stair stretches for calf muscles & she showed me some stretches for hand cramps. They were awful & stoped me mid way in pulling pants up.

I wonder about bring this up w/ my neuro as feel he isn't open minded. I asked for physical therapy ( not pain med. ) for this & he turned me down for script.

Hope this helps. I think my therapst should write booklet for PLS/ALS as she has helped me w/ other muscle issues.

good luck,
kath
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Kathy Dont feel alone about the no feeling Doctor .I was accepted at NIH Bethesda Maryland .He was suppose to sign the App and send it ,instead he ripped it up said he didnt think it was neccessary . Had one said we cant help you ,but come back so we can keep track of your progression . Have another that i took some vials in from Northwestern Univ for a blood study and wouldnt donate the Phlebotomy cost .
Makes you wander who wants a cure and who wants your money ? I Have PLS 7+ yrs. i have no apreciable pain only when i get cramps in my calves or when i do a Face Plant into the sidewalk or wall . I do get some , i think Arthritis pain in the Lumbar area , but i use a TENS / EMS unit for an Hour or so which helps,also on my throat for swallowing issues . I Think each of us has a little bit different symptoms than the next . KInd of a strange disease . Geo
 
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