a lot of pain for a supposedly painless disease :(

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Kristina1

Senior member
Joined
Jan 26, 2017
Messages
822
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
My latest complaint is that I can't sleep at all due to pain in legs and arms. You know the stretching exercise where you sit on the floor, stretch your legs out in front of you, and try to touch your toes? You know the pain in your upper legs when you do that stretch? That is the pain I'm having. ALL NIGHT LONG. And I'm not doing anything, just laying trying to sleep. I try every position to relieve the discomfort and nothing helps. That same type of pain I also have in my arms.

My doctor had prescribed Trazodone to help me sleep. Last night was so awful that in the middle of the night I took a 2nd trazodone, then another sleepless hour or two later I took benadryl. Nothing worked to overcome the discomfort that was keeping me awake.

I'm so frustrated. painless disease my ass.
 
Can’t remember if you have tried mmj. I could not get through the night without it

So sorry, Als just keeps piling on
 
Azgirl, I haven't tried it. My doctor has suggested it to me as an option a few times. I always hesitate because whenever I tried smoking marijuana as a teenager it gave me anxiety. Would medical (vs recreational) have the same result of causing me to feel anxious?
 
You might consider starting with a small bottle of CBD oil without the THC, and take it at bedtime. The CBD doesn’t have the same behavioral effects as THC (eg. you don’t get high from it), but has a lot of analgesic qualities as well as aiding sleep. You can always add THC later, if needed.

I see a massage therapist regularly and find it helpful. I can also see how a trial of acupuncture might be worth considering.
 
Kristina,

I'm so sorry. I've been in pain since before my diagnosis. I have different types of pain but I've experienced the exact pain you described and I'll tell you what I do for it.

I put a pillow under my knees in bed. On the pillow, I put a heating pad on low. I take 1,200 mg of magnesium throughout the day and a Valium at bedtime. I also use CBD oil throughout the day and add some THC at night. I only stretch and to range of motion exercises when my muscles are warmed up (heating pad or hot tub). I also rub magnesium oil and coconut oil on my muscles after showering and, sometimes, right before bed. If you can get someone to massage the muscles before you get into bed, that might help, too.

I have another pain and that is in all my joints. I believe I've had this before ALS but now it's much worse. Every joint I've had MRI says tendinosis, tendonitis, torn rotator cuff, peritendinitis, and so on.

When I was eating paleo, the pain was less. I'm starting back on it when my greek yogurt and cheese is gone. I love dairy but even if there's a chance giving it up might help, I'll do it.

I honestly believe I have some form of connective tissue disease on top of ALS. Yours sounds like pure muscle pain and do whatever it takes to calm it down. Medical cannabis might be your best bet. When mine gets unbearable, I use Oxy to break the pain cycle then go back to Advil and Tylenol.
 
Thank you Kim! That gives me a lot of things to try! I was already putting a pillow under my knees at PT's suggestion, but I hadn't tried the heating pad that sounds like a great idea. I have noticed my stiffness and discomfort is markedly worse since it got cold with winter, I don't fully understand it, but i think you're right to suggest heat. I don't know why I didn't think of trying it myself. I have several heating pads in the closet that I use for menstrual lower back pain.
 
I know what you mean about anxiety. I stopped using mj in my younger days after some paranoia scared me off. I have experienced no anxiety from mmj. I use cbd thc combo oil down my tube now and gently float off to deep sleep. If I get uncomfortable or agitated during the day a few drops under the tongue help almost immediately. I think it's worth a try.
 
I have nothing helpful to say Kristina, What I will send you big *gentle* hugs!

Angie
 
Kristina,

I also put a heating pad on my lower back throughout the day and at night. It seems to relax me so that would help with any kind of pain.

Regarding the medical cannabis, it should be the Indica strain rather than the Sativa. Indica provides more deep body relaxation whereas Sativa is more energizing. The Sativa and even the hybrid caused me to have too much energy and anxiety. I felt almost manic. The Indica just chills me out and I drift off about two hours after I eat it. When I use the drops under my tongue, it works faster.
 
azgirl and kim is that oil by prescription or is it like charlotte's web that you just buy online? my doctor is happy to approve a prescription but im unclear on which products are Rx and which are available w/out.
 
Second the vote for massage, and your doc can write for in-office or home health PT to get you on a stretching regimen since you are still somewhat mobile.

+a low-voltage mattress heating pad so you can relax w/o being overheated all night

and foam or pillows to support shoulders and elbows because if they are not supported, your arms will hurt. You can Google or look on Amazon for shoulder pillow / CPAP pillow. We used those little travel pillows to support the elbows and longer foam strips (from the foam store dumpster but you can also buy) for the forearms.
 
in AZ the doctor fills out a formform that gets you a card from the state. Then you go to the dispensary which is like a big candy store and pick out what you want. I experimented a bit to find the product and dosage that worked best. Unfortunately there is no prescription so we rely on trial and error.
 
You can get Charlotte's Web which, in my opinion, is the best CBD oil. You can order online without prescription. For Medical cannabis, your doctor will have to order. I'm not sure how it works in your state but in Florida, the first step is getting a card. Then the doctor transmits the order to the dispensary and they deliver the product to your door.

I use Trulieve. They gave me a 30% discount on my first order. I use the sublingual drops.
 
What you describe was the same "type" of pain that i had in reaction to the morphine. i have had pain for my whole ALS trip but that pain was different. after getting off of the morphine it went away. maybe you are having a reaction to some meds.
 
I use a medical grade marijuana with 12.5% cbd and 12.5% thc. I find the combination of cbd/thc to work best for me. I stopped baclofen and percocet after switching to marijuana.
Vincent
 
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