Old 06-20-2016, 02:11 AM #1 (permalink)
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Default Pain all over

I have done a search on here and can't really find anything that is helping me. S anyone experiencing pain that keeps them up all night. My legs hurt my neck shoulders. There are areas on my forearms if you touch it hurts. I have not fallen or bruised myself. My Dr says it can be from over using the muscles. I'm not doing anything strenuous. I'm probably doing less. If I lay on one side it will hurt I toss and turn trying to get comfortable. I can understand the stiffness but not the pain. Dr wants to give me muscle relaxers. That seems counter active to me. Relaxing the muscles that maybe dying. Thoughts or insight
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Old 06-20-2016, 06:34 AM #2 (permalink)
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Default Re: Pain all over

I am not sure what disease you have based on your description. However pain has been a part of my living with ALS since before my diagnosis. I have purchased copper compression sleeves for my arms, legs and hands and the do help to take the edge off of the pain. I do not take any medications but will drink a glass of red wine and I find it does relax the muscles some and helps me to fall asleep.
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Old 06-20-2016, 08:13 AM #3 (permalink)
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Default Re: Pain all over

Bookay, I'm so sorry you've got widespread pain, now. I can't imagine where that came from, but I think, if your doctor understands ALS--and also understands YOU--then I would listen to her.

You mentioned muscle. What disease do you have?
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Old 06-20-2016, 11:10 AM #4 (permalink)
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Default Re: Pain all over

Long before my diagnosis, I had muscle pain. Mayo said it was fibromyalgia. I also had a torn rotator cuff and a neck injury. Valium, as a muscle relaxant, helped a great deal as did high doses of magnesium and a little tylenol. Do you soak in a warm tub with epsom salts or have access to a hot tub or heated pool?
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Old 06-20-2016, 10:52 PM #5 (permalink)
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Default Re: Pain all over

let me clarify I only have pain with pressure if Im laying down or if my 4yr old 40lb niece sits on my lap too long if you touch certain areas on my arms or hands. i have als
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Old 06-21-2016, 12:40 AM #6 (permalink)
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Default Re: Pain all over

Quote:
Originally Posted by Bookay87 View Post
i have als
Actually, you said you had PBP: PBP diagnosis
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Old 06-21-2016, 01:44 AM #7 (permalink)
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Default Re: Pain all over

Greg PBP is a diagnosis that can change if things progress. She has reported hand issues so apparently they have unfortunately.
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Old 06-21-2016, 12:45 PM #8 (permalink)
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Default Re: Pain all over

Wonderful. Another moving target diagnosis!
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Old 06-23-2016, 05:32 PM #9 (permalink)
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Default Re: Pain all over

Sometimes, as muscles atrophy, and especially if you're not heavy, the nerves get pressure on them from simply sitting or any other static position. Even though I gained about 15 pounds since my diagnosis, my glutes lost their muscles and I have numbness and pain that goes down my legs, especially on the left (which is the leg where it started.) The doctor said it was from the loss of bulk. I hurt most when I'm sitting.

Have you tried a variety of mattresses?
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Old 06-25-2016, 01:28 PM #10 (permalink)
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Default Re: Pain all over

I have a lot of physical pain. I have much atrophy, I have pain cause I have no padding and no muscle to protect my joints. Previous injuries are an issue also. I am fully paralyzed now and can not move to alleviate me pain.

Mattress overlays have helped me.. there are threads on this site about them... we got one for $100 online, may help preventing bed sores also, avoid bed sores.

Afternoon,

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Old 06-26-2016, 03:10 AM #11 (permalink)
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Default Re: Pain all over

In these examples like lying down, or having a child sit on your lap, a healthy person moves her core around without thinking to adjust to pressure, in ways that you sometimes can't. And often your joints or bony spots are not adequately cushioned or supported, and so your torso tries to compensate, which leads to back pain, as well as the actual pressure on the areas themselves. So it's not just an overlay in bed, necessarily, but something specific under/behind shoulders, elbows and feet, especially.

As for touching your hands, etc., they've probably lost muscle mass and perhaps a fat pad. You can buy or make hand protectors made of various materials kind of like a bicycle glove or covering the whole hand.
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Old 06-28-2016, 08:37 AM #12 (permalink)
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Smile Re: Pain all over

I hadn't thought about my weight loss being a factor but that makes sense Now why couldnt my Dr say that. On the flip side someone gave me some cream that helped with the pain i got my first goodnight sleep in weeks. I ordered the cream and will share what it is once I try it a few more times to make sure it wasnt all in my head. thanks everyone
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Old 06-28-2016, 12:23 PM #13 (permalink)
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Default Re: Pain all over

I've been to three top-notch ALS clinics. Many doctors dismiss pain, minimize pain, or acknowledge pain but offer no solutions. My local neuro is not like this at all and that's why I go to him on a regular basis. He and I came up with a formula for my current pain and will work together in the future.

Right now I'm taking 1,200 mg of magnesium, one extra strength tylenol, 5 mg valium twice a day, one advil and various prescription creams and lidocaine. I have an Rx for Oxy for bad pain which I had for three months in my back. It has since dulled down so I stopped the Oxy. None of these meds left me any less fuctional but they did relax me enough to sleep better, get back to playing cards, and get back to church.

I have an adjustable bed (not a hospital bed) that I got about 5 years ago because I like to watch TV in bed and I've had neck issues from a car accident. I added a topper that cost about $200 and it helped a lot with comfort.

Voltaren gel helps a little. It is Rx in the US but OTC in other countries.

Heating pads help a bunch, for me. I sit on one and put one under my legs at night on a low setting.
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Old 06-30-2016, 03:53 AM #14 (permalink)
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Default Re: Pain all over

Daily massage and ROM, using a magnesium gel or oil does give a lot of relief, particularly if spasticity is involved in pulling joints tight.
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