Unread 09-16-2007, 09:44 PM #1 (permalink)
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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.
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Unread 09-17-2007, 03:14 PM #2 (permalink)
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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
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Unread 09-17-2007, 09:55 PM #3 (permalink)
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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.
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Unread 09-18-2007, 11:41 AM #4 (permalink)
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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.
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Unread 09-18-2007, 07:32 PM #5 (permalink)
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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
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Unread 09-22-2007, 12:51 PM #6 (permalink)
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Thumbs up 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!

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Unread 09-23-2007, 08:09 AM #7 (permalink)
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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
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Unread 09-25-2007, 11:37 AM #8 (permalink)
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Default 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
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Unread 09-26-2007, 12:41 PM #9 (permalink)
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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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