New Here, Need Help

[jack05RN]

Hi,
I thought I had PN till I finally saw a Neurologist who thinks I have RLS. She based this on my description of symptoms. I don't care what it is called. I have been in increasing pain and sleeplessness for ove a year now. Started Neurotin just three weeks ago. It helps some. The one confusing point for me is that I do not seem to have this desire to get up and walk or move. I will list my symptoms and if any who have inclined and kind enough to read, please share your thoughts. I am very discouraged at this point.
1. Constant numb toes on left
2. Symptoms start at bedtime.
3. Very severe but intermittent pain in left foot
4. Left leg and arms "go to sleep" during the night and have to roll over and get off them to regain feeling, so I am waking up over and over to relieve symptoms
5. Intermittent unscratchable itch in feet
6. No pain on walking and symptoms don't bother me in the waking hours. Except for numb toes on left

Thanks for reading and thanks in advance for any replies
Jack

[rthom]

Have you looked up neuropothy?

[jack05RN]

Yes. I posted that I thought I had PN (peripheral neuropathy). I still think that may be it. I feel like I am at the beginning of a long , painful journey of discovery. I have hope I will find relief at the end.

[rthom]

Appologies--I did not get the letters. Yes I would guess you are likely right. But I'm only a fellow sufferer, so take it with a grain of salt. I don't know everything about the rls symptoms. Hopefully someone else will be able to be more helpful. Sorry you are having it so hard.

[jack05RN]

Thanks r

[badnights]

It is quite common to have PN along with RLS/WED, so you may have both.
You do not have an urge to walk about, but do you have an urge to stretch or tense up the affected area?
Does the pain or itch feel relieved at all when you walk or stretch or tense the affected area?

[Polar Bear]

If it helps, here are the questions listed by a doctor to determine if it is WED:

1. Do you experience the urge to move?
2. Is the need to move overwhelming to the point that you cannot resist moving your legs?
3. Will the urge to move increase if you are in a confined position?
4. Do you have symptoms both sitting and lying?
5. How long do you need to be at rest before your leg symptoms begin?
6. Do your symptoms only begin when your legs are in a specific posture?
7. How quickly do you get relief when you start moving?
8. Do your leg symptoms occur when you are walking?
9. If you have obtained relief with walking, do the symptoms ever return while you continue to walk?
10. When are your symptoms worst?
11. When you are symptoms least?
12. Do you find your symptoms are less in the morning?

[jack05RN]

Dear Bad Nights: No I really don't have the urge to move or stretch. When I get the numbness I need to roll over off the affected limb (s). When I have the pains I just tense up and pray they stop. When I get the unscratable itch I bout go freaking nuts and want to saw my foot off.
Dear Polar Bear: Thanks for that list of questions.

[ViewsAskew]

Dear Bad Nights: No I really don't have the urge to move or stretch. When I get the numbness I need to roll over off the affected limb (s). When I have the pains I just tense up and pray they stop. When I get the unscratable itch I bout go freaking nuts and want to saw my foot off.
Dear Polar Bear: Thanks for that list of questions.

WED/RLS is always worse in the evenings and when at rest. It can be very bothersome other times, no question, but 10 PM to 2 AM is excruciating (thereabouts - it can vary). By 3 to 4 AM, it's much better and it can definitely start earlier. But, that's why so many people thought it was a sleep disorder - because it happened when people were trying to go to sleep..

[jack05RN]

What you said about the 10pm to 2am period being the worst is key. That is just what I experience . So that really helps me to understand this is probably RLS/WED. Thank you for that information. I was looking for a....ummm how to say it...a commonality of symptoms. jack

[ViewsAskew]

What you said about the 10pm to 2am period being the worst is key. That is just what I experience . So that really helps me to understand this is probably RLS/WED. Thank you for that information. I was looking for a....ummm how to say it...a commonality of symptoms. jack

There are four key features. The most important isn't the sensation (because those can easily be confused). While we do have a sensation, the primary feature is the URGE TO MOVE. Some people actually don't have a sensation - not many, but some. But, we ALL have this really strong urge to move, that if we didn't? We'd explode!

Next, is that when we move, it helps. The urge decreases and the sensation also does. To me the urge and the sensation are so tied, I can't really separate them. I'm not sure it's like that for everyone.

Then, there is that when you are resting and in the evening, it's at its worst. Sit down and thing you'll doze for ten minutes after dinner? Not likely! Want to watch a silly movie that doesn't require a lot of mental attention? You'll be popping up and down. Car ride? Can be excruciating.

Last, is that there is this uncomfortable, icky, painful, annoying, won't go away sensation that initiates all of this. This is where we can get confused with so many other problems, including PN or other forms of neuropathy, like SFN (small fiber neuropathy). And, to complicate it, it seems as if many people have both. So, where the neuropathy starts and the WED ends isn't all that clear. It can be tricky. And, to describe it is trickier, yet. For me, it starts as an awareness that I have those body parts. They might be internally glowing or something - I just feel that I have them. Soon, that feeling gets more uncomfortable and I have to move around. The discomfort, for me, is akin to stcking your tongue on a 9 bolt battery. It's electrical, discomfiting, and makes me instantly anxious and on my guard. I don't think of it as painful, but many people do.

Is it possible that you have a type of neuropathy AND WED going on?

[jack05RN]

Well....I just do not have that urge to move. Never happens. I sit , I stay. Naps, movies...no problem. So with that said.....I guess I do not have WE'D. What I have is pain, itching deep in the bone and numbness in left leg and arms. When they are numb they feel .....congested...I guess I would say. Wakes me up. The pain is when I first lay down of if I cross my legs at ankles. I can live with the numbness but the pain is so bad that I am scared. I am scared that is will continue to progress which it has over the last year.
This pain and deep itching I just don't know if I can take much more of it. I am scared to go to bed.
Listen thanks so much.
Say if anyone out there reads this and has the same symptoms...please write back. Jack

[debbluebird]

I looked up Peripheral Neuropathy symptoms. It didn't mention the itching until I read that when shingles causes PN then itching occurs. So then otherwise the PN caused pain, burning, tingling and numbness, and some other symptoms.
I also know that they use Gabapentin (Neurontin) and Lyrica to treat nerve pain. But first they have to determin the cause before they look at which treatment. Other drugs used are: Tylenol, Ibuprofen, antidepressants, antiseizure meds, Capsaicin, and Cymbalta. Probably other too.
Hope this helps.

[ViewsAskew]

Well....I just do not have that urge to move. Never happens. I sit , I stay. Naps, movies...no problem. So with that said.....I guess I do not have WE'D. What I have is pain, itching deep in the bone and numbness in left leg and arms. When they are numb they feel .....congested...I guess I would say. Wakes me up. The pain is when I first lay down of if I cross my legs at ankles. I can live with the numbness but the pain is so bad that I am scared. I am scared that is will continue to progress which it has over the last year.
This pain and deep itching I just don't know if I can take much more of it. I am scared to go to bed.
Listen thanks so much.
Say if anyone out there reads this and has the same symptoms...please write back. Jack

It does sound scary. All of us here completely understand how something disrupts sleep and makes your life miserable!

I found a bit of info to add to Debbie's. PN is worse at night, which is probably why it's so easy to confuse with WED. I'm a bit surprised a neurologist would think something so painful and with numbness would be WED. If you are able, you might want a second opinion from a new neurologist. Whoever you see will need to do tests to make sure this is what you have.

There is info about PN here: http://www.ninds.nih.gov/disorders/peri ... opathy.htm

And some very good information here: http://www.neuropathysupportnetwork.org ... hy-faq.htm

I also think that there are types of peripheral neuropathy. I believe the doctors can do tests to determine it.

[badnights]

PN is distinguished from WED/RLS by the lack of relief when the affected parts are moved.

There is another disorder I thought of it when you mentioned that lying with your legs crossed triggers the worst pain. Something called positional discomfort. I don't think this is you, because a simple change of position is often enough to relieve it, and total duration of discomfort/pain does not last as long as WED usually does .. .(not very helpful if you don't have both diseases for comparison )

The WED Foundation brochure also lists this as a possible WED mimic:
Meralgia paresthetica is an uncommon nerve condition.
This disorder causes numbness, pain, tingling, or
burning on the front and side of the thigh. It usually
occurs on one side of the body, and the cause may be
compression of the thigh nerve as it passes through the
pelvis.