I thought there was no pain

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Janie H

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Jun 23, 2013
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714
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PALS
Diagnosis
06/2013
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US
State
South Carolina
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Rock Hill
I awoke from a nap today and both of my calves were in knots, cramping badly, can hardly walk, I have has faculations since diagnoses. Massage helped some. My feet hurt as if I have walked a long way. I have had plenty of liquids. Sorry, just venting.

Janie
 
I'm sorry Janie. I hope tomorrow is a better day. Feel free to vent all you want
 
There are anti spasmatic drugs out there. The wife of a tennis buddie is in a trial of the drug Mexletine at u of Washington. She thinks it's been helpful with cramping. May be good for ALS too. Alex
 
I'm taking steady hydrocodone daily, a 50 mcg fentanyl patch, and morphine drops as needed for "breakout" pain.

My neck, thighs shoulders, and arms hurt the most. :(
 
Quinine (Qualaquin, Quinine Sulfate) is a drug long used for muscle cramping but in 1995 the FDA made it available by prescription only because of its very rare but potentially severe risks (heart arrythmias, birth defects, blood disorders, hearing loss). Even so I would certainly recommend asking your doctor about trying quinine. I took it twice a day for years - until my muscles were too weak to cramp severely - and had great results and no side effects.
 
the whole no pain thing is a fib made up by researchers who have not truly experienced ALS. the cramps are one type of pain that is common for pals.
 
Is it fair to say that pain in the muscle is not a diagnostic symptom of ALS?

My understanding of pain in ALS is that it generally comes after the patient has been paralyzed. Joint pain comes from being immobile, and limb pain comes from swelling.

No? Yes?
 
Is it fair to say that pain in the muscle is not a diagnostic symptom of ALS?

My understanding of pain in ALS is that it generally comes after the patient has been paralyzed. Joint pain comes from being immobile, and limb pain comes from swelling.

No? Yes?

Unfortunatly I would tend to agree.
 
Nuedexta has 10mg of quinidine sulphate as well as 20mg od dextromorphan. Seems to help with bulbar symptoms like lability, swallowing and voice. Perhaps for cramping also? Have not had a severe cram since I started taking this
 
The pain is so hard to talk about as we fear the DIHALS folk complaining of their aches and pains.

Pain is not a 'symptom' of ALS Mike, that is completely true. The sensory nerves are not involved that is true. Early in ALS there is no pain, but as the muscles waste, especially if there is spasticity of the muscles, the pain is cruel.

The muscles that are wasting are shrinking, and so trying to use a limb with wastage can cause sudden severe cramps because muscles are not solitary creatures. eg to reach forward to pick up something in front of you involves many muscles, some contracting and some stretching. If one that needs to stretch has wasted, then the stretch causes pain, and often also causes a sudden cramp as the poor muscle can't take the stretch that is being forced on it by opposite muscles contracting.

I noticed how Chris's pain changed as his arm wastage progressed. eg while he had some use of his arms he would experience a lot of pain from the reasons above as he reached just a fraction to far forward, and would get shocking cramps in particular muscles (always the same muscles). As his arm wastage progressed further and he could no long lift his arm to reach forward, he no longer had pain or cramps in those particular muscles. However, the shoulder join pain increased as the shoulder froze more, and elbow pain started happening as they were no longer flexing often and as his hands drew in to claws the finger pain was plain cruel. When he finally let me start splinting his hands (would not allow it until he could no longer use them and they were very clawed) we were able to stem a lot of that finger pain if he would allow massage and splints on regularly.

We used panadol and oxynorm (liquid endone) for the pain, but he mostly refused anything other than panadol as he was paranoid about taking any opioids or opiates and preferred to sit in constant pain :(

Janie massage, ROM and positioning are really important for relieving pain as well as meds that you find work for you. eg when you sleep you may need to use pillows or wedges to help keep your legs and feet in better placement.

We also used a magnesium gel from Ancient Minerals to rub into painful muscles and joints. I've used it myself for some years, and the magnesium being absorbed directly into those areas does often help give some extra relief.
 
Thanks Tillie,
I feel pretty stupid, I canceled my clinic appointment because I thought I was in remission. May not be a symptom of ALS but it hurts like hell, I am going to make a point to stretch more, my CALS is putting tonic water in my PEG, the last neuro that I saw suggested it would help cramps, ( usually in my neck,jaw and tongue) may need to go to clinic after all.

Janie
 
Even if your clinic slot has been postponed if you write or call they should be able to prescribe based on your sx, not require a visit. If not, you're at the wrong clinic! Non-rx apart from what Tillie mentioned include diet rich in potassium, magnesium, calcium and adequate liquids. DK what PEG formula or food you use but best not to rely too literally on the amounts mentioned on the labels since throwing everything together tends to reduce nutritional impact.
 
Tillie, what you describe is our current experience. Steve had muscle cramping pain then a period of relief with little cramping when he started the riluzole. Now the spasticity is setting in and its a b****. He is having trouble standing because its in his quads, its in his hands, and now his upper arms and shoulders are starting. The pain is severe and small motions cause large amounts of pain.

Mike, for my husband, als isnt pain free.
 
Janie don't feel stupid. We make decisions with the information we have at the time. Hindsight often makes us feel stupid, but we just live with that ;) (I had a friend give me a T Shirt a few years ago that says "It seemed like a good idea at the time" lol)

I agree that all supplements are a good idea too.

But I think that knowing the mechanics of what is happening to those muscles helps to deal with the pain a bit by attacking the symptoms. We can't stop the cause - ALS wasting the muscles, but we can try to help relieve the resulting pain.

It's another reason PALS should not try to be tough and overdo things, it will only increase the pain if you are trying to use and stretch muscles that can't take it.

I hope you get that clinic sorted and they can help you with something for the pain.

It is still a matter that when talking about the early symptoms of ALS and getting diagnosed, that pain is not a symptoms of ALS.

Pain is a result of what ALS does to the muscles and supporting structures as a result of muscle wastage as ALS progresses. There is actually a difference. ALS itself does not cause pain, but what ALS does will end up with pain for many PALS.

Janie, have you watched the video's I put up of massage and ROM? That may help if you can get your CALS or someone to do this working out what gives you some relief.
 
I do wonder sometimes what I say to make my posts go to mod ... Max might find something to add to his mod index :)
 
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