Question on pain
August 23, 2011 at 10:14 am
I have a question. I have CIDP and am currently on IVIg infusions every three or four weeks. I am doing good. I really do not have much in symptoms and go along with my life pretty normal. But lately I have had pain in my fingers and fore arms. It starts at night when I go to sleep. My hands start to fall asleep and the hurt. When I wake up they are no longer numb after rubbing them but they kind of ache all day and I notice they feel kind of funny. As the day wears on they feel better. No problems with my feet at all. Can you have just your hands affected? My feet use to be affected along with my hands. Then I started the IVIG and all symptoms went away. Now the hand thing started this month. Any insight? Should I talk to my doctor of just document it for now? I hate to call the neurologist for every little thing but don’t want to have more nerve damage happening in my hands either.
AnonymousAugust 26, 2011 at 10:43 pm
CIDP can present itself in the hands.
The pain sounds like it is achey muscular type instead of sharp burning nerve type. The nerves affected may be muscular and not necessarily sensory and you may be losing strength. It is not uncommon.
Have you tried a warm soak? Any of the muscle pain relievers should help. I would certainly tell your neuro. He needs to know so he can be proactive with treatment.
AnonymousAugust 26, 2011 at 11:24 pm
i have problems with my arms and hands too, it wakes me up in the night. it could be carpal tunnel, which my dr. said it is common with cidp. is it just a few of your fingers or all of them? for me, it’s usually the first 3 digits and my forearm but sometimes it’s my whole hand. i looked it up and read about the 2 nerves that run down into your hands, the ulnar and median nerves one will effect your pinky finger and 1/2 of the 4th and the other the first 3.5 digits I believe…I don’t remember exactly but i remember the dr. saying is it common especially with cidp. i also get very intense pain on the tip of my index finger and the inside of my middle finger…weird stuff, never a dull moment!
i’m so glad to hear how, other than this, you’ve been doing so well, you must be so happy. i hope the pesky hand stuff resolves…:)
AnonymousAugust 28, 2011 at 1:34 pm
Happens to me as well. Most in my feet and legs, but happens to my hands and arms. I get tingles just on the underside of my arms and into my fingers and my muscles contract into hard balls like my calves and you can see the veins in my for arms popping out, like I’m this huge body builder lifting weights and I’m getting ripped. However, I’m not lifting weights and I’m not a body builder.
This also affects me more at night. It will sometimes carry over until the am, but it starts normally at night. I have a dull ache pain as well in this area.
I PRAY my arms and hands don’t get like my legs and feet as I work with my hands doing art which I love very much!
AnonymousAugust 29, 2011 at 4:04 pm
About ten years ago, or so, I had night time pain in both of my arms and hands.
By trial and error, I concluded that my nerves on both sides near the elbows were unhappy when I slept. Meaning what?
Meaning that my ‘funny bone’ nerves, more precisely called “ulnar” nerves were sensitive to pressure, probably due to the demyelination going on.
I can recall, a few years after that, one neurologist’s emg/ncv tests included this language: “…patient MAY benefit from ulnar transposition…”
No, I did not have this surgery following the failure of two right wrist carpal tunnel releases to provide any relief.
What did I do about the pain? Well, I took many, many supplements and herbals.
However, I also slept with padding under both elbows. They make things you can purchase. Or, your p/t (physical therapist) can provide them. Think of a tube sock with both ends cut off and some foam padding in the middle.
I no longer wear those. But, I did wear them for years. Definitely not a high fashion garment…….
August 30, 2011 at 9:23 am
I have two wrist splints that I used when I was pregnant -my pregnancy caused temporary carpel tunnel syndrom. I guess I will try sleeping in the wrist splints and see if this helps with my hands falling asleep at night. The pain in my forearms seemed to have subsided a bit but my hands still hurt at night. I toss and turn all night though because my whole body seems to ache at night and I need to reposition myself every 20 minutes or so to take pressure off the areas that are hurting. I talk ibuprofin sometimes before bed but it doesn’t always help. I have a 4 inch memory foam topper on my bed that is very comfy but still have aches all night long. I don’t want to have to take sleeping pills to sleep so I just deal but I NEVER seem to get a good nights sleep anymore. But the good thing is that once I am up and I stretch out a bit my pains seem to go away and I feel better during the day when I am up and around. I don’t get it why I hurt at night but not durning the day.
AnonymousAugust 30, 2011 at 10:56 am
Same here; my logic is that I hurt more at night because the muscles tighten while at rest. In the daytime, I am moving them more, so that helps them to stretch out and give me some relief again.
I’m having a long relapse right now, full recurrence of all onset symptoms, nerve pain on all my skin surface head to toe, lots of contractions, hair fall-out, headache, insomnia and weakness. On some of my worst nights I take generic acetamenophen (white tablets, no dye); and they give me some relief and I can sleep. These days, I work till tired, rest, and work till tired, etc. day and night. Sometimes, I get up at night and do some chores, and sleep in the next day till the pain wakens me. In the middle of the night, a cup of hot coffee helps put me to sleep, another peculiarity that started with onset in 2007. Before that, drinking coffee in the afternoon or evening kept me awake till 5 AM. But GBS changes the sleep center in the brain, among other things. And I can often drift off to sleep for awhile while watching a movie, so that helps me to catch up on sleep. I am so drained of strength these days from the constant pain and struggle to do my chores and work.
Life isn’t normal anymore, but as long as we figure out some coping strategies, we can deal with what it is for us now. Hoping our bodies will stabilize soon, and we can sleep again, and the pain will lessen and be more manageable. Stay focussed.
Now, where’s my protein and my grape juice? And my coffee-cup?
And my longest movies?
AnonymousAugust 30, 2011 at 10:01 pm
I think there are a number of reasons we hurt more at night in bed. We’re not moving much, so our circulation is lessened, which means less oxygen to our damaged nerves and our muscle cells. Because we’re not moving much, our nerve pathways are not crowded with sensory signals, so pain signals predominate. Plus, everything ALWAYS hurts worse at night. I just saw my pain management specialist today, and he suggested I take a double dose of Lyrica before bedtime; that would help with the night pain and help me sleep.
You must be logged in to reply to this topic.