Yes I am on neurontin and have upped dose quite a bit it helps but not like it did at first I have a weird processing thing with meds they lose effectiveness quickly. It does help just not enough tried cymbalta but that did not do me any good! Also my lips are numb alot and my mm weakness is more when nerve pain is worse. I do have a hard time resting as am on go a lot just can't let go of my old life I really miss it!
Wow I want to thank you all for your responses.. I feel so much more validated in my pain. I find it interesting that we all experience this but have no answers. Love the exercises...my lips and face have been going numb so I do know what you feel like.
At the time, I had already had my first PFD and was able to strain because my CSF flow was normal. I was in PT for an unrelated issue, actually, but i had him work on my nerve issue too! :) I have experienced nausea while working out if and only if I was incorrectly contracting muscles that attach to the neck /head. I cannot tolerate some yoga positions that use those same muscle groups. I do get rounds of odd pains here and there. It's always something!! Hahaha
Did it hurt before? How much Neurontin do you take? Has anyone suggested upping the dose?
Weirdly, I'm having pain in the ring & little fingers of both hands. These are some of the places that were numb when I was pricked everywhere with a pin. I presume that the nerves are "waking up", as Selma says. I'm not treating it in any way; it's just hard to type.
I get the upper jaw pressure behind my teeth. I am post-op 41/2 months I never had very infrequently before surgery, but not its almost contstant. I also have tingling under my left eye,nose and up forhead. My NS says he doesn't know why. I think its from trigeminal nerve compression or the nerve that branches to it. During surgery, I did have a flattened nerve. I'm hoping its from it being stunned. I am on Neurontin too early to see if it works.
Thanks, sound interesting. I think I can handle the fly one for sure, haha. The problem I see is that my shoulderblade muscles seem to be very weak these days, yet the rest of me has always been quite strong. I get nauseous when I use those muscles. They say to avoid straining when you have Chiari, and I think that I learned the hard way that it is not a good idea. I was doing yoga when the arm and leg pain began. When I stopped yoga, the pain decreased. This week, however, it has begun to happen with no activity!
Have you ever experienced this. I know we all deal with our individual symptoms. I'm assuming, though, that you would recommend physio.
Thanks for the info !! :) Heather
PT taught them to me. never pull up using traps. strains neck muscles.
Theses worked best for me. May not be best for everyone!
1. Lay on belly. arms out and even with your body. do a fly, pulling arms up and contract the shoulder blades inward- NOT using the neck muscles. set of 10 or so to start with at 2 reps.
2. using bands, one knee on ground, lean a little forward. do a pull up motion slow and controlled. use arm muscles, mostly. i did a weak band at a set of 10 and could do no more!
3. i used a foam roller. got into push-up position. climbed one hand at a time on the roller, then off the roller. alternating the position in front of the roller, on the roller, behind the roller, on the roller. that's one set I did 5 the first time!
4. stability ball. push-up position. make small circles. until tired!
basically, push-up like motions, not using trap muscles, not ever pulling anything up- always pull down, keep head straight at all time- important! you can engage all muscles too (except neck- and traps!)
building muscles won't happen over night! pace yourself and try them first until they feel right. don't use weights until you are ready to increase reps or doing an crazy number in the sets themselves.
This is a brand new symptom for me. I have yet to get any validation from my doctors that it is Chiari related, but I haven't seen my NS for 5 months. I'll have to wait until September to tell him :( I can't stand the waiting or the uncertainty.
RheaAnn, what exercises did you do to help with this pain?
I had some nerve pain in my arms and hands. I also had some numbness and tingling, though. I just so happened to be going to physical therapy at the time and the therapist said that I my nerves were tight. I do have to sleep oddly at night so my head doesn't hurt, so I know I sleep on my arms and/or hands. But i did some exercises and it helped to decompress the nerves as well as strengthen the upper body muscles, which alleviated the symptoms completely. I hope your pains subside soon!! It's no fun at all!
I also have severe nerve pain. My arms, legs, back, you name it. Lately the pain is in my upper yaw. No one believes me, so I just take meds and try to go on. Reading the posts here helps me because it shows me that I am not crazy. I wish you all well and hope you all will get some relieve and help from your Dr. I think for me it is too late, I am so done with it. Explaining to the Dr. what problem I have and seeing the look in his eyes nothing but disbelieve.
Do keep us posted on what ur Dr has to say regarding this.....I am sure it may help a few of us : )
Selma..my joints ache in the am and it takes along time to get going...the nerve pain is worse on hands forearms but not really close to joints. Just one of those weird things I get..will discuss this in detail next visit with pain doc..
Irislita...thanks for hug this forum had helped me not feel so isolated couldn't do without!
the thing of the legs is what i dont get. i mean arms would make sense because of nerve compression, irritation...but why the leg pain??? brainstem related I dont know. my left arm is so weak just when i try to hold me on my arm, I start to tremble.sorry for ur flare...and sorry I dont have explanation for the leg thingy. big hug for u cash
Hi...I tend to have pains, but as I have said on so many threads I am attributing mine to my EDS dx as I know it can be joint pain...as to if it is nerve pain not sure .....
What area of ur arms and legs do u notice this pain?
I notice it is always near a joint, like my knee, ankle, elbow....etc....