Phantom vibrations???
 

There is a story on Yahoo news (video with no link) today, discussing how
normal people are getting phantom vibration sensations from their cell phones.

I think this is very similar to the vibration sensations PNers sometimes have.

The neuro that was interviewed says the brain learns the feeling, and then it
may become phantom for some people! (like phantom limb perceptions after an
amputation).

So that leads me to wonder how much we are really perceiving, and how much it might be historical perception? (learned responses) ??

If you go to Yahoo news today, you can see the video. I couldn't find a link to it, I'm sorry.

Mrs D.,

I haven't looked at the video yet...but will.

This is something that my Neurologist explained to me a few months ago...the brain simply remembers; windup, central sensitization, etc. The brain simply remembers or leaves an imprint long after the initial injury has healed. Which is pretty much true in my case and my Neurologist has me convinced. I have also been reading the book "Central Pain Syndrome" and it makes a lot of sense even if pretty technical. But I am looking at it all or taking it all in from being a spinal patient.

yes, I
 

went to a long seminar on chronic pain, last spring.
The central pain loop in the brain...is really a complex thing. You'd have to
have the graphs and study them for a while to really understand them.
The seminar was targeting Medication Overuse Headache, but RSD and Fibro were included. I would think some PN fits there too.

It occurs to me that if some pain is truly central...historical...then we should
be able to UN-learn it. This might be where hypnosis, and relaxation come into play.

Mrs D.,

I agree! And another thing...I now know why opiates and even meds such as Neurontin or Elavil did NOT work for me. Of course they still use them but it was Klonopin that made the biggest difference...just quieting down the CNS. And this was just through trial and error and trying various meds; but when as a last resort she tried me on Xanax, it was a godssend...and then on to Klonopin. Anyway, there is another poster on BT that posted about research being done on the chilli pepper and something about PH selective painkillers that would TARGET those sensory nerves. But I do agree...how do we go about unlearning all of this. I DO have a friend with supposed RSD. And I say supposed because she still doesn't know for sure if she has it or not. Some docs are saying yes and some are saying no. In any case, she is attending a Rehab center where they work STRICTLY with spinal patients and/or patients with nerve damage. She is now to the point where she is exercising in warm water and says there has been a remarkable change in pain...much, much lower. I would love to check this place out and/or ask for an order for PT....she says it is wonderful. Soooo....maybe this is one way to get things to calm down.

This is very interesting Mrs. D and ii totally makes sense. I have always wondered why i still have pain if the EMG showed my nerves were normal. It can be a bit of damaged that cannot be perceived by the EMG and a bit of what my brain has learned. Hypnosis sounds interesting.... i am going to discuss it with my neuro.

Really good information
 

Thanks Mrs. D,
It makes all of this pain make more sense. My pain/neuro tried to explain it to me as a continous loop. Pain goes in, pain is supposed to go out in a certain period of time, ..if pain doesn't then the brain has learned it.

I so wish my nervous system would quieten down. It feels as if my entire body is vibrating and twitching. And..vibration from wheels of cars makes it worse. I've noticed and I think I remember Kmeb saying this also. The more I use my muscles and the more tired I get, the worse the vibration, twitching and trembling is.

I found this link to the article: http://www.usatoday.com/news/health/...s_N.htm?csp=34

Billye

Hmmmm....maybe another reason for me not to get a cellphone. :wink:

fanfaire
:cool:

Let's all do some yoga!!!

Breathe in . Breathe out.

Don't laugh. I do this at night. Sometimes if I get a flare up (for whatever reason), I try and get my brain re-wired. Alan and I actually did some Tai Chi in the living room the other night. I balanced on one foot and did some of the moves we see the chinese people do in the park.

Alan looked at me balancing on one foot and said "how on earth can you do that". I just stood there on one foot and looked at him.

He tried to balance on the one foot. He could not sustain this.

I have no idea why. Probably has something to do with the CIDP.

And his neuro thinks his balance is better??

Are we (at our age) supposed to be able to stand on one foot for any length of time without putting that foot back on the floor?

I did this for approximately 3 to 4 minutes. Might not sound like a lot of time but Alan couldn't do it for 15 seconds. I probably could have done it longer but I was doing certain movements with my hands and certain breathing.

It helps to relax.

Melody

with my numb feet if its dark or i close my eyes i fall over never mind balancing on one foot

I read similar about this. Also for people like us who have been in pain for a long period your brain is extra sensitive to pain I think. It is something how the brain precieves it. I know at the clinic they used the biofeedback to help with the mental part. I don't know if its retraining my pain but for my anxiety I have started again to do deep breathing and relaxation tapes. At the clinic they use to say the more you talk about the pain the more you feel it.

My left side is worse than my right. I can stand on my right foot for a maybe 30 sec without swaying, but not my left. My left foot feels like a constant twitching is going on while I am standing there and I sway after a very short time. I can stand nearly as long with my eyes closed on my right foot, but not at all on my left foot, I tip immediately.

As I mentioned once before, when we had a power outage at work and I was in total darkness, I was totally disoriented, my sense of balance was completely gone. I was right next to my desk and my boss's wife was right beside me, she walked me out to the light, by the time we got there, I was totally shaken up. I never felt that disoriented before, not that I remember.

Why do our nerves effect out balance--did I miss something?

Fascinating subject, i come across some reading that talks about how pain works, the subconscious and biofeedback technique.
http://www.fibrotalk.info/index.php?...d=41&Itemid=48
http://www.fibrotalk.info/index.php?...d=40&Itemid=48

Brian :)

very fasinating
 

Brian,
The first post explained what my neuro was saying and the second post I forwarded to my youngest stepson to see if it might help with his son (14 yrs. old) who had a devastating stroke 2 years ago.

I appreciate your research.

Billye

A stroke at any age is awful enough but such a young child, just isn't fair at all.
I really do hope there is some value in that for him.

Brian :)

I'm with HeyJoe

Silverlady I'm so sorry about your son. My thoughts are with you and the whole family.
Now on the biofeedback, I have anxiety times 10. The biofeedback was such a great part of the clinic and really helped me with the anxiety so much. I keep saying I want to find a biofeedback therapist here. I really encourage all of you to try it. I'm not sure if it helped my pain front but any help is great on any aspect. I think it takes time too for it to work.

Yeah, me too Billye:

So this young person who suffered the stroke, he's your step grandson, is that right?? Makes no real difference in the scheme of things. He's your grandson.

I hope your step son is dealing as best he can. Has the young boy recovered??

I've never heard of such a young person having a stroke.

My god, the stuff families have to endure.

No wonder why so many people have such stress in their lives.

My thoughts are with you.

Melody

Hi
 

I have seen them being brought in with strokes,then transfer to Childern's
hospital. It was aways a shock..

Hey Joe after 18 years of dance lessons,which I must say was stupid,
Children tiny feet are noT ready for that,anywho now with numb feet,
I also fall over,,Neurontin doesn't help with balance but helps with some
of the pain...Oh I would think at times we are in a quagmire,or whatever.
hugs to all Sue

Not much better
 

My step-grandson is the only boy grandchild in our family. He had a vein burst in his brain when he was 12 years old. Here is the link to the type of problem he had. http://cpmcnet.columbia.edu/dept/cerebro/AVM.html They put him into a deep coma for a period of time, did surgery on his brain to close those veins off and he had a stroke while this was going on.

It has been two years since this happened. He is now paralyzed on one side of his body, and it has been a terrible journey for my step-son and family. My grandson will never be the same.

Didn't mean to steal the thread but I felt that this was really necessary info to post as this was a life altering problem not only for my grandson but the entire family.

I hope you all will read and learn about this neurological problem. And thanks so much for asking.

Billye

I'm so sorry. Your right pain and illness effects the whole family. Its very hard to cope but I know support for both sides is important

Billye
 

with the cancer exper. with my son,I found as a parent,that it can break,
up husband and wife,which breaks a family...But most of all the burden
that child must feel...It's so sad isn't it studies show the stress can cause
just to much for some people..But we were the grownup's,oh sad,very sad.
Dear hevens 12 yrs. old..I think you have taught us something,no you have.
Hugs to all...Sue Bless them all Billye

Hopefully they talk to him about how he feels? I know I'm pretty open about how I feel guilty for what my pain does to my family. I know rationally I can't control the pain but it still helps to get the feeling out. So hopefully they get which can be hard for a 12 year old boy but to communicate his fears,anger,sadness. My mom always says there is nothing that hurts like watching your child suffer. I wish I could take her pain away. You know when I was at the clinic they had the Ronald Mcdonald house with kids. They had such a spirit about them. My heart really goes to them.

so Sorry to hear about your Grandson, 12 is so young to have a stroke, but in the context of having a burst vessels in brain, he is lucky to be alive! I met a nurse a while back whose son had a stroke when he was 10 months old, initially it paralysed his whole right side and affected his vision to some degree but that child mad fantastic improvements, by the time he was 3 he had a slight weakeness in his right leg and his fine motor skills were still a little off but the hope was that it would continu to improve. It seems that growing kids still have more plasticity in the CNS, so that damaged areas re route etc. hopefully at 12 he is still a growing boy he may ne lucky and still have some of this repair over time.

as for centralized pain, it is something i have dealt with for over 20yrs, Finally 6 years ago i had a syncromed pump implanted that gives me low dose morphine directly to the fluid around the spine. It is considered a last resort type of treatment but for me i calll it a life saver ( i was close to suicide due to uncontrolled pain despie massive doses of medication), i wa albe to get back to wrk part time and now have the pain controlled most days. Had i been referred to thiss pain clicnic earlier i maay still have 2 legs, the pain was so bad that i had my right leg amputated but as the pain was now centralized, it did little to redce the pain and added phantom paininto the mix too- i would alway encourage anyone with chronic pain to insist on a referral to a pain management clinic, it really is such a specialized subject that few MO's really understand

Kebsa:

I learned much from what you wrote. I learned that there are people out there who go through such torment, and still survive.

You actually had a leg amputated due to pain??? Mind if I ask what your diagnosis is??

You are a very very brave individual. I don't think I can ever complain about pain ever again. I had to say to myself "okay, you have arthritis, (my knee is killing me, so I ice it, and when the weather changes, well, it drives me nuts). But then I came on the computer and BAM, saw what you wrote.

Believe me, took away all my self-pity, even for one day.

I wish you a very nice Thanksgiving, and a pain free one at that.

Good for you that the implanted pump is doing it's thing for you. I remember that Jerry Lewis had the medtronic pump. About 5 years ago, my husband was in a period of pain where he was going out of his mind. He had been diagnosed idiopathic PN for over 10 years by that time. We went to a doctor in NYC, who ultimately determined it was not his back (every single doctor said "no, it's not his back), and they were correct, it's not his back. My husband has an auto-immune disorder that results in his having PN.

But 5 years ago, we were sitting in the doctors waiting room and we came upon a leaflet talking about the Medtronic pump. We asked all sorts of questions and the doctor said 'no, this is not right for you, because we don't know why Alan has PN". But if you want to give it a shot, we put it outside the body for one week, so you can test it to see if it stops the pain, then if it works, we implant it"

So we continued our journey to find out why my husband had the PN. Last year, he had a spinal tap and they found protein, which led them to say"you have auto-immune stuff going on". Why no one thought to do a spinal tap 15 years ago, is anybody's guess. We've seen more doctors than you can count on one's fingers.

The one pain med that definitely worked for him was the Duragesic Fentanyl pain patch. Stopped his pain completely (especially with the Vicodin for breakthrough pain). But he kept having to up the dosage and they stopped at 125 of the patch. Then my husband found a chiropractor neurologist who literally saved his ***, and weaned him off of the patch. That led to specific exercising and massage, and well, he takes no pain meds today.

Yeah, he still has pain, but nothing to the level of where he was 5 years ago.

Also, when his pain hits, he uses this thing from Brookstone, that has different levels, (I can't even pick the thing up, it's so heavey), it's not the magnassager by the way, that thind did nothing.

He calls it "the vibrating massager thing from Brookstone". Well, it has different settings, and he actually puts it up to the highest vibration setting of 10. (Might even be higher). I mean, think about it. He places it on the side of his thighs and the blood is then moved around his leg and all the pain between his toes, goes away.

I don't like anything that vibrates on my legs (I have a slight case of diabetic PN). Alan and I are very different in what works for us. I use Methyl B-12 and it stopped most of my burning. Didn't do a thing for him.

So we keep trying to find what eases our symptoms.

I just wanted to let you know that your posting moved me.

Have a nice day.

Melody