Paresthesias, numbness and sleep, oh my!

[duplinwino]

I was curious if anyone else experienced pins and needles feeling, specifically in their scalp and face. DH gets these occasionally, sometimes when transferring or sometimes just out of the blue with nothing out of the ordinary going on. He says they're pretty painful but they pass pretty quickly. Not sure what it's from?

We're also having a lot of trouble with sleep. He wakes me every hour and a half to two hours to turn him to his side, to back, to side, and so forth. He can only stay in one position for so long and his thigh goes numb or he experiences pain in his hips, shoulders, knees or elbows, just depending on how he is positioned. This is good for no one of course as we're very (VERY!) sleep deprived. Any ideas or help?

Take care!

Ashley

 

[abbas child]

I can't address the pins and needles feeling--which sounds painful! I can tell you what works for me as for not turning in bed. I'm in a hospital bed which has a wool fleece pad totally covering it. Because I have to wear diapers, I have a waterproof but washable pad under my butt which goes from side to side. Otherwise, I sleep right on the fleece. I have a small (not sure, but maybe 9 by 11) feather pillow--which is on the flat side and not fluffy but firm, under my knees, and I sleep on my back. The foot end is raised about 20 degrees, and so is the head end. It took a few nights of wanting to turn, but I fought it and eventually was able to consistently stay put all night. I may awaken during the night and feel some discomfort. If so, I change the angle slightly or I adjust the pillow so it's really centered under the knees. But waking up is now very rare. I usually get a good 8 hours of sleep. My husband is my main caregiver but has to work, getting up early and leaving early--and is not a good sleeper in any case, so wakening him isn't an option for me. Incidentally, those pillows can be found at Amazon--feather pillow, boudoir size.

 

[duplinwino]

Thanks abbas child. I work as well and get up at 5:30, so him needing to be turned so often is killing me. He's 200 pounds so shifting and pulling and turning get my adrenalin going and that doesn't help me get back to sleep quickly! He can't really move his arms or hands so those have to be adjusted as well and his feet have to be put just so. It's like a three ring circus in our bedroom some nights in the pitch dark. I tried to talk him into an adjustable bed when we bought the one we have now (orthopaedic mattress), but he wouldn't hear of it. I should appreciate the fact that he wants to sleep right next to me every night but... we have tried the pillow between his knees but I will check into the smaller ones. Thanks again

 

[mare]

Ashley-

While the hospital bed would be the best solution, since various positions can be achieved & different mattress toppers can add extra comfort (esp. an alternating air mattress? that gives slight "turns" throughout the night to relieve pressure), until then have you tried using a "turning sheet"?

This would be a little harder in a queen bed, but still better than what you are doing now. Take a flat sheet & lay it on top of the fitted sheet when making the bed. Don't tuck it in anywhere.

When you need to turn him, take the end of the sheet opposite to the side that you will turn him to. Pull the sheet over him & pull sheet toward you. So, if he wants to turn to face the middle of the bed, take the side of the sheet on "his side of the bed", fold it up & over him. Then you would need to go around & kneel up on the bed. You should be able to "roll" him over in one move. This may take practice to see how hard you need to pull, because of his size & your's.

It is helpful to position pillows first, before turning. One running lengthwise between his legs which you can shift slightly, once turned, if you have to. An arm pillow is easy to place when already on side.

Turning to the opposite side is easier since you will be at the side of the bed you are turning towards. Flip the sheet from the middle of the bed (or your side) over him after placing pillow, go around to "his side" of the bed, and pull sheet toward you.

When doing this, first be sure he is not too close to the side to begin with, or he may just fall out. So, you would first pull him, using the sheet, (and satin sheets are good for this as they slide easier) slightly to the middle of the bed, then turn the sheet over him, go around to the other side of the bed & turn. Position arms as needed.

As I read this, it sounds confusing. Think of when you have cookie dough, putting it on wax paper & shaping it in a roll. You bring the paper up & around the dough and then roll it. You do the same with the sheet. Does that make sense to you?

It would be so much easier with a hospital bed for several reasons. The whole bed could be raised so you don't have to bend down while doing all the pulling & turning. It is twin size, so you wouldn't need to climb up on the bed when turning to the one side. And, I'm not sure if he has breathing issues yet, using a bipap, but certainly being able to adjust the head of the bed would help as well.

Can you compromise- swap out your bed for a hospital bed for him & a twin bed for you?
That way you can still be "next to him", but have the ease of the hospital bed.
Keep trying to persuade him to do this. You are doing way more work than you need to; it can be, and should be, at least a little easier for you.

Hope this was helpful; hope you get some sleep!

 

[duplinwino]

Mare, sorry it took so long to respond but thank you so much for your wonderful advice! No confusing at all, sounds great.

Still wonder about the pins and needles feeling. He got them over the holiday, this time from his chest up to his head. Just odd.

Thanks again!

 

[GlenBrittle]

I get them below my next across the back of my shoulders.

I know its stress/tension/anxiety doing it to me.

Yes , it gets painful , but I can usually stretch it out , with some really kewl snaps coming from my neck. Its one of those dam-that-hurt but feels-so-good-now things.

Is it the same as what you are talking about - I am not sure. One thing ya might try is a massage.

Glen

 

[mare]

Ashley-
Even though ALS is a MOTOR neuron disease, and not sensory, there have been reports of sensory problems. PALS have pain, and not secondary pain from cramps & contractures, but real nerve pain. And some report numbness & tingling- although not common or meant to be a symptom that determines diagnosed.

People here have talked about such issues- unfortunately I can't find the direct threads, maybe someone will remember. It was more something that occured later in the disease process as opposed to early onset.

I know I read recently an article discussing this matter. Neuros are realizing that in some cases, PALS are experiencing sensory symptoms. They think maybe it is due to the proximity of the particular sensory nerves to the involved motor neurons.
I'll see if I can find the article.

Of course, as Glen said, it can be caused by other things as well. We do have to be careful not to assign every symptom or problem our PALS have to ALS.
It can be annoying & irritating, but cause no real harm. Glen already suggested a
massage might be beneficial, as it would stimulate circulation.

Also, general ROM exercises would promote circulation. This might also help with his discomfort at night. I am not suggesting you add this to your already overloaded list of duties to do. Ask your neuro/clinic team about getting regular PT for him.

I think this was suggested to you before. Maybe he will be more willing now. You will only get a limited number of visits at first, but if it seems to help him, the drs. should know how to code it to get more visits. It would be worth a try?

p.s.- if you are using the "draw-sheet/ turning sheet" method, remember "white sales" are coming up in January/February. Look for satin sheets then, as they can be pricey.
Don't buy in sets- see if you can get just the flat sheet. If not, get the set (while on sale) and just cut the elastic corners so it will lay flat. You will have 2 that way!