Old 09-16-2007, 10:44 PM   #1 (permalink)
New Member
Join Date: 2007
City: ER
State: MN
Country: USA
Diagnosed: 09/2004
Posts: 17
bilphi is on a distinguished road
Angry PLS Pain

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.

bilphi is offline  
Old 09-17-2007, 04:14 PM   #2 (permalink)
New Member
Join Date: 2007
City: Anthem
State: AZ
Country: USA
Diagnosed: 11/2009
Posts: 11
AAA is on a distinguished road

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
AAA is offline  
Old 09-17-2007, 10:55 PM   #3 (permalink)
Extremely Helpful Member
Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Posts: 8,030
Al is on a distinguished road

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 is offline  
Old 09-18-2007, 12:41 PM   #4 (permalink)
New Member (Say Hi)
Join Date: 2007
City: Nottingham
State: n/a
Country: UK
Diagnosed: May 2007
Posts: 1
SDW is on a distinguished road
Default PLS Pain

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.
SDW is offline  
Old 09-18-2007, 08:32 PM   #5 (permalink)
Join Date: 2007
City: pierrefonds
State: quebec
Country: can
Posts: 29
manfred is on a distinguished road
Default 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
manfred is offline  
Old 09-22-2007, 01:51 PM   #6 (permalink)
Join Date: 2007
City: Vancouver
State: WA
Country: USA
Diagnosed: 03/2007
Posts: 177
Frizzel is on a distinguished road
Thumbs up Pain with PLS

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, 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 is offline  
Old 09-23-2007, 09:09 AM   #7 (permalink)
Join Date: 2006
City: Anytown
State: New England
Country: USA
Diagnosed: 00/0000
Posts: 3,564
CindyM is on a distinguished road

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
CindyM is offline  
Old 09-25-2007, 12:37 PM   #8 (permalink)
New Member
Join Date: 2006
City: lexington
State: ky
Country: United States
Diagnosed: 02/2006
Posts: 51
kathmc is on a distinguished road
Default muscle pain



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,
kathmc is offline  
Old 09-26-2007, 01:41 PM   #9 (permalink)
Senior Member
Geo's Avatar
Join Date: 2007
City: Ruskin
State: Florida
Country: US
Diagnosed: 12/2001
Posts: 506
Geo is on a distinguished road

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
Geo is offline  
Closed Thread

als, cramps, diagnosed, diagnosis, fasciculations, muscle, muscle pain, pain, pls

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Similar Threads for: PLS Pain
Thread Thread Starter Forum Replies Last Post
Pain AfraidButNotAlone General Discussion About ALS/MND 25 10-02-2013 01:34 PM
Pain and what not. ScaredArkansan Do I Have ALS? Is This ALS? 8 06-15-2013 11:46 PM
Arm Pain blue123rd Do I Have ALS? Is This ALS? 1 11-28-2012 07:40 PM
Mom is having pain ... Curly Sue Chronic Pain 6 08-09-2011 03:38 PM
back pain? stomach pain? fatigue? papaw50 Chronic Fatigue 7 10-05-2010 07:15 AM
Chronic pain/ dulling of pleasure (meds, or pain itself?) robc Chronic Pain 1 04-29-2009 02:09 PM
Pain!? codya13105 Do I Have ALS? Is This ALS? 3 12-02-2008 03:45 PM
pain and ALS juliesmile Do I Have ALS? Is This ALS? 4 02-22-2008 10:48 AM
Pain with PBP? mamaoftwo General Discussions About PBP 1 01-17-2008 05:06 PM

Go to the top of the page

  ALSforums - Get help and support with ALS/MND