[Kbanister]

Hi all.... cool site. Glad I found it.

Here's the deal with me, hopefully someone can relate because, in all honestly, I don't want to be alone in this hell that has become my life. I itch from head to toe. It gets really bad in the afternoon. I've been to four doctors. The one today gave me head lice treatment. She didn't even look at my head, and I DO NOT have lice for crying out loud. The other two docs did cbc and blood panels and say I'm B12 deficient, which I'm learning is related to nerves.

The whole thing started a few months ago, when I woke up at 1 am with itching so intense on my feet it was straight painful. Then it went away and then a few months later (about six weeks ago) came back on my arms and since then spread to my entire body. The itching usually starts around noon. It's so hard to finish the work day cause all I want to do is go home and pass out on antihystiminees. My quality of life is shot and I'm basically ready to take a can of gas, pour it all over me, and light a match. For reals, this is such hell. The itch is so bad. I feel like I'm getting poked with little sewing needles, all over my body.

Does this ring any bells with anybody? Please dear god, tell me someone out there has this and has a solution for me, otherwise I am going to do the unthinkable, because I cannot live my life this way.

Please help.

[Kbanister]

Thanks to the moderator who moved this thread. I hope someone has good news, and very much appreciate all your help.

[loretta]

Originally Posted by Kbanister

Hi all.... cool site. Glad I found it.

Here's the deal with me, hopefully someone can relate because, in all honestly, I don't want to be alone in this hell that has become my life. I itch from head to toe. It gets really bad in the afternoon. I've been to four doctors. The one today gave me head lice treatment. She didn't even look at my head, and I DO NOT have lice for crying out loud. The other two docs did cbc and blood panels and say I'm B12 deficient, which I'm learning is related to nerves.

The whole thing started a few months ago, when I woke up at 1 am with itching so intense on my feet it was straight painful. Then it went away and then a few months later (about six weeks ago) came back on my arms and since then spread to my entire body. The itching usually starts around noon. It's so hard to finish the work day cause all I want to do is go home and pass out on antihystiminees. My quality of life is shot and I'm basically ready to take a can of gas, pour it all over me, and light a match. For reals, this is such hell. The itch is so bad. I feel like I'm getting poked with little sewing needles, all over my body.

Does this ring any bells with anybody? Please dear god, tell me someone out there has this and has a solution for me, otherwise I am going to do the unthinkable, because I cannot live my life this way.

Please help.

Hi kbanister,
Welcome to neurotalk. I am so glad you found us too. There are so many kind, informative friends here that are truly 'there' for each other. Please hand on, you need help immediately.I have RSD full body and internally.14 years. For the last 5 I've had a wonderful Dr. I remember him telling me that he has a patient that has continual itching. There is a website from a retired long term RSD Dr. It is rsdrx.com Dr. Hooshmand still has the website up. Under puzzles list there are 146 questions and answers. Puzzle #126 is YOUR question. I would copy this information and take it to your Dr. Do you have an experienced RSD Dr.? You can go to the national site RSDSA and put in your zip code and you receive name and phone number of a RSD support group. It would help if you told us where, state you live? Cleveland Clinic is an excellent hospital for RSD I'll give my Dr. puzzle 126 and see what he says. He is a neurologist, psychiatrist and pharmacologist. He just built two clinic and they both have HBOT in them. Hyperbaric Oxygen Chambers help with circulation, which in turn should help with your itching. I believe most insurance co. don't cover it-not sure. I'm going to go thru HBOT treatment.-saving up for it now.
There are compounding pharmacies now that will mix up a formula a Dr. gives them. Have you been diagnosed with RSD? You need a diagnosis!!!!!!
Don't give up-there are good hospitals and Drs. Please tells us what state you live in. You can call RSDSA and talk to the president Jim Broatch He is real nice and I attended the seminar here in Scottsdale, AZ this spring. We had several Drs. and a scientist.
Try the Epsom Salt Bathes, they are soothing. I flew 3 states away to a orthopedic sports injury group and was diagnosed in 1 minute. I had been misdiagnosed. The Oregon Dr. did some neuclear med tests to confirm and started me on treatment next day. I'm going to give you my phone number on private message. Hang in there, loretta

[SBOWLING]

Welcome to NT!!

I know how awful the itching can be. I had a doctor tell me I was a B12 deficient. However, that wasn't the case. I use to itch from head to toe anywhere anything touched my skin it would itch out of control. I take periactin 4MG. I use to take it 3 times a day and now I am down to once a day. I took benedryl (spelling?) it's over the counter until I got in to see my doctor.

My doctor told me that there is a nerve that talks to a very small part of the brain and tells it when to itch. Since I have full body RSD that nerve and the brain weren't giving and getting the correct signals. Thus the awful itching. It's like having poison ivy and you can't get it to stop itching.

I know how awful the itching can be and I know the feeling of wanting it to stop at all cost. Please call your docotor if he/she can't help. Call a neuro doctor. My Pain Management doc. sent me to an allergist who started the periactin.

Take care
Sherrie

[AiKane]

Glad you brought this up. I have RSD now for 3 years and just started to itch real bad few months ago. I had no idea could be related to RSD. It is as horrible as the nerve pain and when I'm in a flare it hurts to scratch because it feels like sandpaper on raw skin. Because my scalp also itches, I thought maybe dry scalp, but the itch is deep under the skin. Tried head n shoulders etc with little relief. My itch also goes up in the afternoon and evening, wondered why and if it could be related to the increase of activity from the day or medication levels?

Welcome. I love this site and everyone is very helpful!

[Kbanister]

Originally Posted by AiKane

Glad you brought this up. I have RSD now for 3 years and just started to itch real bad few months ago. I had no idea could be related to RSD. It is as horrible as the nerve pain and when I'm in a flare it hurts to scratch because it feels like sandpaper on raw skin. Because my scalp also itches, I thought maybe dry scalp, but the itch is deep under the skin. Tried head n shoulders etc with little relief. My itch also goes up in the afternoon and evening, wondered why and if it could be related to the increase of activity from the day or medication levels?

Welcome. I love this site and everyone is very helpful!

My itching/crawling skin kicks in during the afternoon too. I used to donate blood and I always had to do it in the AM, when my iron level was at an acceptable level. I'm wondering if as the day progresses that B12 is depleted thus the itching?

[Kbanister]

OH and a little about me:

33 years old, female
Live in - Orange County

No official diagnosis yet.

Thanks for the welcome!

[AintSoBad]

Please, have RSD / CRPS ruled out by a specialized doctor (Neurologist that treats these, not all do).

visit rsdsa.org for more reading info..
and read more here.
here's another,
http://rsd-crp.org/default.aspx

Are you having any kind of pain, besides the itching? Burning, throbbing?

You needn't do anything drastic! Please, put that out of your mind.
Often, doctors aren't very good at a complex diagnoses, it took me 7 years, and over 100 doctors, and many many visits.

If you give us more information on your symptoms, and the general area where you live, someone here may know a good doctor for you.
In the meantime, any doctor you see, ASK TO RULE OUT RSD / CRPS!
Then, it becomes much more of a serious question for them! They'll have to take you seriously!

Wishing you the best,
Pete
asb

[Kbanister]

Originally Posted by AintSoBad

Please, have RSD / CRPS ruled out by a specialized doctor (Neurologist that treats these, not all do).

visit rsdsa.org for more reading info..
and read more here.
here's another,


Are you having any kind of pain, besides the itching? Burning, throbbing?

You needn't do anything drastic! Please, put that out of your mind.
Often, doctors aren't very good at a complex diagnoses, it took me 7 years, and over 100 doctors, and many many visits.

If you give us more information on your symptoms, and the general area where you live, someone here may know a good doctor for you.
In the meantime, any doctor you see, ASK TO RULE OUT RSD / CRPS!
Then, it becomes much more of a serious question for them! They'll have to take you seriously!

Wishing you the best,
Pete
asb

Thank you all for your kind words, means a lot. The last six weeks have been agony. My name is Karen BTW.

Here's some more info on me. Just general health info that maybe plays into what's happening to me.

-The "Itching" sensation feels like I'm getting poked with small needs ALL OVER MY BODY. It's so sudden it causes me to jerk or twich in a rush to touch where the pain is. It's worse in the afternoon. It started out feeling like just an itchy body, like I had dry skin, and has progressed to the pin prick feeling. I don't feel the pricks on my scalp, just incessant itching - and no lice.

-There are times, and this has been going on for years, that I feel like electricity is going thru my legs and the only way to make it stop is to walk around. It's never been enough to see a doctor about it, but it does happen frequently and passes if I go for a walk or jog.

-I'm 5' 5" and in the last two years I've lost 30 pounds w/out even trying. Have gone from around 130 to around 100 pounds. The weight loss seems to have stopped in the last couple months. But I frequently get diareah after I eat or while I'm eating, and then other days I am am super constipated. It's either one or the other. I don't know when/what meal diareah will hit so I avoid social situations in restaurants now.

-Stress: I have been marrried for 8 years, of which the last seven taking care of my husband who has been battling leukemia (and as of Dec 12, 2008 was proclamed CURED.... that's right folks, he WON!!!!!!!!!!). We are now getting divorced and have huge debt from all his medical bills. So I suppose stress could be an issue? (on a side note we're still best friends and he's the best guy in the world so any single ladies in San Diego? - j/k)

Anyways, I welcome ya'lls suggestions, words of wisdom, etc. I hope that this message finds you all in a glorious moment of relief.

As we say in the cancer world, "keep on keepin' on".... but that's just getting harder and harder to do!

-Karen

[fmichael]

Dear Karen -

I have been following your thread for a day or so and have been intrigued by your low B-12 count, where I had that as well, now controlled by supplements, but in the process have picked up a tentative diagnosis (unrelated to your own, to say nothing of a small MI 5 years ago) that is associated with homocysteine, which is defined by Mosby's Medical Dictionary, 8th edition. © 2009, Elsevier, as:

An amino acid containing sulfur and a homolog of cysteine, produced in the demethylation of methionine. It is also an intermediate product in the biosynthesis of cysteine from l-methionine via l-cystathionine in the breakdown of proteins. High levels of homocysteine are associated with an increased risk of collagen cardiovascular disorders, particularly thromboembolic stroke. It is believed the amino acid may have a toxic effect on cells lining the blood vessels. Studies also indicate that low levels of homocysteine are found in people with high intake of B vitamins. [Specifically, B6 and B12.]

http://medical-dictionary.thefreedic...m/homocysteine

That said, there is also evidence that homocysteine is a "risk marker and not a risk maker." "Homocysteine: The Rubik’s Cube of Cardiovascular Risk Factors, Editorial," Mayo Clinic Proceedings November 2008, Vol. 83, N. 11, FREE FULL TEXT AT http://www.mayoclinicproceedings.com.../1200.full.pdf Accordingly, I would not urge you to start taking B-12 or Folic Acid - unless your doctors have already prescribed it - where that might just cover up the marker until you have your homocysteine levels checked, if that hasn't been done already. (And if not, shame on the doctors.)

What I would urge is that you seek a diagnosis from a very good multi-specialty clinic, specifically Scripps in La Jolla. There are just too many things going on in your body right now. Otherwise, bouncing from one doctor to the next may be just an endless round of "12 Blind Men and the Elephant." Let's just say, you deserve a good check-up, hopefully including the services of a competant peripheral neurologist. And in the meantime, get your homocysteine level checked pronto, if that hasn't already been done.

Mike


ps And for what it's worth, your description on Friday:

There are times, and this has been going on for years, that I feel like electricity is going thru my legs and the only way to make it stop is to walk around. It's never been enough to see a doctor about it, but it does happen frequently and passes if I go for a walk or jog.

Sounds just like my son's Restless Leg Syndrome.