[podpeople]

Hello:
When I sleep my hands and feet get numb and my hands feel like they are swollen but when I look at them ,they are not.
Lately, the numbness has started spreading up my legs and up my arms and half of my face is numb. I have trouble sleeping because of this.
I told neuro and he said " are you sure you're not waking up from the pins and needles because the feeling of them swollen would not wake you up"
I think it does.
I would like to know if there is anything OTC or natural I can take for this.
Thank you

[ginnie]

Welcome to Neuro Talk. I too have PN. Has your doctor given you any kind of medication? I ask this, as there is some real help out there for PN. I use a number of different therapies, such as a compounded medication you rub in. this eases the pins and needles. Numbness remains, but it isn't as painful. There are also lidoderm patches, which help with the more painful areas.
Your B12 levels should be checked too. I have taken this for a year now with some other suppliments, and over time this PN has gotten better. Not gone, better.....
Please look up the kind of doctor called a physiatrist. My particular doctor specializes in pain first, but then treats the "whole" person and thinks outside the box. There is a great deal of empathy from her too which goes a long way toward feeling better.
Let me know what you have tried to date. Also if you need a referral, don't hesitate to ask your primary care physician for both a neurologist, and a pain specialist, Maybe a Physiatrist..... Don't give up. There are things that help. Being awake at night is no fun. When I have trouble sleeping, I am given klonopin. I don't take this often. I hope have have said some things that will give you some ideas. Be good to yourself. ginnie

[podpeople]

Hi Ginnie:
Thank you for answering. Neuro has not given me any medication. He wants me to see a hematologist.
My vit b12 was 374. My vit D was at 8 last year and now I got it up to 33.
Is the compounded medication you are taking by prescription?

[Stacy2012]

Hi!

Ginnie has given you great advice!

I just wanted to say that in my opinion even though your b12 is within normal ranges it is low, especially for someone who has PN. I keep mine way above ranges, mine was 2,000 last time however, that number does NOT tell us how much of it is ACTIVE B12 only what is in the blood serum.

[chloecasey]

Originally Posted by podpeople

Hello:
When I sleep my hands and feet get numb and my hands feel like they are swollen but when I look at them ,they are not.
Lately, the numbness has started spreading up my legs and up my arms and half of my face is numb. I have trouble sleeping because of this.
I told neuro and he said " are you sure you're not waking up from the pins and needles because the feeling of them swollen would not wake you up"
I think it does.
I would like to know if there is anything OTC or natural I can take for this.
Thank you

Hi
I too have major symptoms that occur the minute I lay down at night, all started about 20 months post-op for Thoracic Outlet Syndrome (1st surgery complications resulted in 2 further surgeries, in the hospital for almost 1 month and lots of issues since (now at about 30 months) ....if I have done too much that day its awful.

My symptoms are like yours numbness in legs, arms and yes on the left side of my face even that swollen feeling.......along with these I also am light headed and nauseous and feel very fatigued and almost flu like?

Have recently gone to a neurologist, he has run blood work, had brain & cervical MRI will get results and have EMG done also.......Not sure I made the right choice in the Doctor but will here what he has to say, I may have to do like Ginnie said & find a Physiarist. He even mentioned a sleep study and I see no point as I do sleep well, I just wake up with the pain.

My question to others that might read this is....Has anyone had this occur after complications from a surgery, especially when there seems to have recurrence at a surgical site that then seems to have pain spread to other parts of their body? I feel so strongly about this but I have not had any straight answers from other doctors that I have seen since all this began!!
And then I find that most people think because I look OK that how can I possibly be ill???

Would appreciate any thoughts from others

[Dr. Smith]

Originally Posted by podpeople

My vit b12 was 374.

That's still a bit low (See MrsD's Vitamin B12 Sticky thread); over 400 would be better.

Doc

[Dr. Smith]

Originally Posted by chloecasey

He even mentioned a sleep study and I see no point as I do sleep well, I just wake up with the pain.

My question to others that might read this is....Has anyone had this occur after complications from a surgery, especially when there seems to have recurrence at a surgical site that then seems to have pain spread to other parts of their body?

I was sleeping perfectly fine (I thought), but I would get symptoms similar to those described here (waking with numb extremeties and flu-like symptoms). I got the sleep study at the urging of my spouse. I now sleep with a cpap, and on a wedge. I still have PN, but no longer wake up numb and feeling sick.

You might ask the second question on Reflex Sympathetic Dystrophy (RSD and CRPS)

Doc

[ginnie]

Your doctor is not helping you. He is sending you to someone else and has offered nothing in the way of help. More testing isn't going to help the immediate problems. See a Physiatrist. Ask your Primary care doctor for a referal. Hemotologist is not the doc. of choice for most PN.
I have a PC lesson here in a bit, but if you want me to list the ingredients in my compounded medication, I can do that later today. This can be given to you by your Primary, along with lidoderms patches. Maybe these two can take the edge off until you see a Pain specialist, or someone who knows what they are doing. Your neuro, should have been able to prescribe something for you. I have no Idea why he shuffled you to someone else. I will be in touch. ginnie

[podpeople]

Hi Dr. Smith and Stacy
I have been taking 2500 MCG /day of vit.b 12 but only for past month( not suggested by neuro but because I read on this board about importance of b12).
Hi Ginny
Yes I would like to have the ingredients for the medication.Thank You so much.
I think the reason he is sending me to a hematologist is because in one of the blood tests it said polyclonal gammopathy.
I also thought it weird that I have to see a hematologist.

[ChaucerFan]

Originally Posted by chloecasey

Hi
I too have major symptoms that occur the minute I lay down at night, all started about 20 months post-op for Thoracic Outlet Syndrome (1st surgery complications resulted in 2 further surgeries, in the hospital for almost 1 month and lots of issues since (now at about 30 months) ....if I have done too much that day its awful.

My symptoms are like yours numbness in legs, arms and yes on the left side of my face even that swollen feeling.......along with these I also am light headed and nauseous and feel very fatigued and almost flu like?

Have recently gone to a neurologist, he has run blood work, had brain & cervical MRI will get results and have EMG done also.......Not sure I made the right choice in the Doctor but will here what he has to say, I may have to do like Ginnie said & find a Physiarist. He even mentioned a sleep study and I see no point as I do sleep well, I just wake up with the pain.

My question to others that might read this is....Has anyone had this occur after complications from a surgery, especially when there seems to have recurrence at a surgical site that then seems to have pain spread to other parts of their body? I feel so strongly about this but I have not had any straight answers from other doctors that I have seen since all this began!!
And then I find that most people think because I look OK that how can I possibly be ill???

Would appreciate any thoughts from others

Yes, ChloeCasey, I have had this--or something pretty similar! In 2007 I had a thoracotomy for a benign neuroma (schwannoma). Afterward I developed mononeuropathy at the site of the incision. Finally got Rx from a pain doctor for Nortriptyline, which helped quite a bit--I stopped the Nortriptyline after about a year because the pain was tolerable. But then about six months ago I started getting PN symptoms--one foot, then leg, then other foot, then hands/arms, even face. Officially diagnosed as "idiopathic." The neurologist said there's no connection with the post-surgical nerve damage and nerve tumor (which was ALSO "idiopathic). But I can't help wondering, and my thoracic surgeon thinks there might be a connection. Now I'm getting relief (and pretty good sleep) from combination of Nortriptyline and Gabapentin, but I'm worried about the future. It's good (in a bad way, if you know what I mean) to learn that someone else has had this experience.