Old 07-11-2018, 12:40 PM #1 (permalink)
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Default Cramping and pain.

Hey everyone,
A few days ago I had very bad cramps in my right leg, groin/thigh, to the point of screaming. It was out of the blue, I was just sitting. Yesterday almost the same thing in my left arm and hand. My pinky actually curled because of the cramp.

Since then I'm with this horrible pain, I'm simply unable to lift my right leg anymore because of it and to stand I have to lean on something to get some impulse. Putting on pants hasn't been the highlight of my days. My left arm is already weak, but now because of the pain, I lost some range of movement. I believe this is a result of cramp + spastic muscles, as they do not recover very well from stress.

I have an appointment with my neurologist on August 1st, so I'll ask him what he would recommend, but until then has anyone ever been through something like this? Secondary pain from cramps and some loss of movement, even if temporary? I don't know how long it'll take for the muscles to be able to recover. I'm on 40mg of Baclofen and it seemed to be working, I was mostly fine but these past few days have been awful. Today I was yawning and my jaw cramped, so I was 'locked' yawning for a few seconds. Thankfully no debilitating pain after that, just some soreness.

I'm afraid because I really don't know if out of nowhere I'll start cramping and fall or something. I was preparing to face a lot of things with this disease but this level of pain was not something I was imagining. Any help is greatly appreciated.

Thank you!
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Old 07-11-2018, 12:45 PM #2 (permalink)
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Default Re: Cramping and pain.

So sorry. Do you think the cramp actually caused an injury maybe?

What are you taking for cramps. I have good luck with magnesium though I have had to titrate up. Pickle juice, mustard and tonic water are all other choices.

Mexilitine was found to help cramps significantly if you have no contraindications. I was offered it but so far am controlling things without
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Old 07-11-2018, 01:10 PM #3 (permalink)
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Default Re: Cramping and pain.

Stretching helps. I do about an hour of pt exercises daily on my arms and legs and that helps. I do get cramps in my back but my bed has a massage feature and that works well.
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Old 07-11-2018, 02:47 PM #4 (permalink)
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Default Re: Cramping and pain.

In addition to everything else mentioned, massage [by a person] is worth trying. And a low-voltage heated mattress pad may help the muscles relax at night.
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Old 07-11-2018, 02:59 PM #5 (permalink)
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Default Re: Cramping and pain.

I take 1,200 mg of magnesium daily. That was recommended years ago my a cardiologist. I also use THC topical cream, topical magnesium oil, lots of potassium rich food, and drink plenty of water.

I thought cramps were causing my knee and shoulder pain but I found out I had torn my rotator cuff in my shoulder and that weakened my arm and caused loss of range of motion. I have no idea why my right knee hurts except maybe overuse in the pool.

I know I need to start massage and PT but I've just had so much to take care of that I put it off.
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Old 07-11-2018, 07:49 PM #6 (permalink)
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Default Re: Cramping and pain.

I can not say enough about how many of my cramping spasticity issues are resolved by cannabis. I use a 1:1 ratio of CBD/THC at 12.5%. No cramps, controls spasticity and is wonderful for pain. The tricky part is getting it. In Canada, we have legal medical marijuana through licenced producers. I don't know what Brasil has for laws but it is worth looking into.
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Old 07-12-2018, 07:24 AM #7 (permalink)
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Default Re: Cramping and pain.

Nikki,

Yes, I believe the cramp caused some sort of injury. I didn't have any of these problems prior to the cramps. It looks like I had a groin strain, but I was sitting on the couch watching TV. In healthy people, the effects of a cramp usually start going away in 1-2 days. It's been almost a week and I feel no improvement whatsoever. In fact, I'm worse because I had cramps in other places. Have no idea what could have triggered this.

They only gave me Baclofen for the cramps and mild spasticity, it was working, the past month I only had some minor cramps but now...

I'll ask my doctor about Mexiletine. Gonna buy pickles today

Thank you!
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Old 07-12-2018, 07:45 AM #8 (permalink)
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Default Re: Cramping and pain.

I'll ask my doctor for a referral to a physical therapist. I've actually been meaning to ask him but always forget to. I moved so started seeing a new one, but my previous neuro wanted me to start respiratory physiotherapy as a precaution.

PT + massage seems to be the way to go then. Could acupuncture help? Always had a curiosity to do it.

Kim - thank you. I'll try some magnesium as well. I guess I'll start with 700-800mg and see what happens. Do you do water aerobics? Weakening muscles or spastic ones could cause some pain in joints, I remember my doctor asking me if I had pain in my knees because of spasticity. But mine is really random - below the elbow, hand, the groin. Really unpredictable, anywhere that a strong cramp hits. The problem was that these last few ones were the strongest I've ever felt and really debilitated me.
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Old 07-12-2018, 07:59 AM #9 (permalink)
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Default Re: Cramping and pain.

Vincent,

I really really wanted CBD + THC, it seems to help a lot from what I've read. Any marijuana product here is actually illegal, however, you can import CBD from the US, but only those with neglectable amounts of THC.

Still, the bureaucracy is insane. You need a very detailed medical report and approval from the "Brazilian FDA". The biggest problem is finding doctors that would actually prescribe it, most just say "I'm not familiar with it and no guidelines have been made regarding ALS so I don't feel comfortable prescribing it". It makes me wanna punch them.

Anyway, I have the names of some doctors that prescribe CBD so I'll try to make an appointment. I'd like to try and see how I'd react at least. It's not very cheap, I found some for about $80-100, but they charge about $130-150 to import. Doubles the price.
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Old 07-12-2018, 08:01 AM #10 (permalink)
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Default Re: Cramping and pain.

Do try the Magnesium first. It really has controlled mine. I am currently at 800 having gone up d/t breakthrough.

I take it at night because it also helps me sleep. The side effect is GI so maybe start lower than planned. I found my body acclimatized somewhat. I had to work up to the 800 from 400 by alternating days but now it is ok
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Old 07-12-2018, 08:13 AM #11 (permalink)
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Default Re: Cramping and pain.

I have very painful cramping. Like you said about your pinky, for me, my fingers curl in a death grip (this is actually a forearm cramp) and my husband has to pry them back to release the cramp, he says it feels like im fighting him but im doing nothing it's just the cramp. Ironically, I could never ever ever achieve that strength outside a cramp, my fingers and grip are VERY weak. The same happens with my toes, leg muscles, arms, tongue, neck, and abdomen. I take gabapentin and baclofen, but what helps more than either of those is medical marijuana. I use a tincture form and it really helps. Still, the cramps have worsened in last 2 months and my doctor has encouraged me to try mexilitine so I think I will be going ahead with that.
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Old 07-12-2018, 05:33 PM #12 (permalink)
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Default Re: Cramping and pain.

For those using magnesium for localized cramps, GI effects can be avoided by using a lotion, which can be very effective. If an oral form is needed, the glycinate, gluconate and malate forms may be less likely to cause GI issues/interactions. But they affect people different ways, so if one isn't your cup of tea, move on (pun intended).
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Old 07-12-2018, 08:44 PM #13 (permalink)
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Default Re: Cramping and pain.

I take a combination of gluconate and oxide. I take the oxide because it helps me MOVE things through
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