Greetings! I'm a new member

NAS7 · 09-24-2013, 12:29 AM

I was just diagnosed in August and I'm looking to relate to others that have this.

Kitt · 09-24-2013, 08:39 AM

Welcome. Tell us about yourself.

Sallysblooms · 09-24-2013, 11:47 AM

Welcome to the group.

NAS7 · 09-27-2013, 02:36 PM

Quote:

Originally Posted by Sallysblooms

Welcome to the group.

I am 51 and was diagnosed in August. Still adjusting to the supplements and pain has been reduced substantially by using D-3 and Super-B Complex. I did not want to take Lyrica when my Dr. asked because I feel that I take enough meds already. I have been disabled since 1993. I have CFIDS, Fibro Myalgia, A "bad heart", sciatica and a few other health issues. I actually thought that the neuropathy was Fibro Myalgia until the pain and numbness became overwhelming.
I am a poet and an artist. I am attempting to do some very basic yoga to help my body calm down. This is brand-new territory for me. I had only heard of this once before from a friend who is diabetic and suffers from it terribly. I guess I'd like to know if this is a wise approach to the neuropathy? I hope to meet others who can tell me what may be normal or notso. I realize that everyone is different, but felt that I could benefit from this forum when I am able to use my computer. I hope this isn't too much information and I Thank-You so much for being here!

mrsD · 09-27-2013, 03:34 PM

This is a good start.

What type of artist are you? Do you have contact with pigments, solvents? Some of them are toxins to nerves.

Also I'd like to ask about that "bad heart"... does this mean you are on statins for cholesterol? These drugs damage nerves in some people.

This is good that some initial supplements are helping you. Don't forget about magnesium in some form...either soaking in epsom salts, taking a quality supplement or using a topical lotion like Morton's new Epsom lotion.

Yoga is good. It teaches helpful breathing which can lessen nerve symptoms due to poor breathing habits. Just don't strain anything with some of the more difficult moves.

There are things that help PN for most people. But a "cure" is not realistic for many. Stopping progression and lessening discomfort is a serious goal, everyone here can perhaps attain.

The exception is the progressive hereditary forms of PN called CMT (Charcot Marie Tooth) disease. Do any of your family relatives have PN, and it is progressing?

Stacy2012 · 09-27-2013, 03:43 PM

Hi!

Dont forget the supplement Benfotiamine. It is my favorite "drug". It really does relieve the burning for me.

Best advice is to spend time reading ALL over this forum, it is full of great info, especially the supplements post that is at the top of this forum. I have been here over a year and still go back and read all over the place here.

Idiopathic PN · 09-27-2013, 09:56 PM

NAS,

Welcome to this forum. I am sorry you found your way to us because of your pain, but as you read the posts here, you will find information that may help your condition. I am glad that get improvement from taking Vit D. that is a good indication that your PN might respond to supplements. PN has been my first major chronic condition, so this is my first online support group. It has been my life line ever since. As I developed other health conditions, this is the forum that i am comfortable and confident "going home to", so to speak.

Please continue posting, ask questions and most especially -- read.

Mary

NAS7 · 09-28-2013, 08:07 PM

Quote:

Originally Posted by mrsD

This is a good start.

What type of artist are you?
Do you have contact with pigments, solvents? Some of them are toxins to nerves.
I write (Use white-out as needed), draw (black pen, chalk or oil pastels), paint (water color), sing and make detailed collages (Gluestick and ModPodge)
The poetry, singing and collage work are my main releases. My sketching and painting are a great release but are in no way extraordinary.

Also I'd like to ask about that "bad heart"... does this mean you are on statins for cholesterol? These drugs damage nerves in some people.
No. They said it was congenital, that my paternal Grandmother had a "weak heart" and that I have a faulty valve. (Mitral) I do not take statins.

This is good that some initial supplements are helping you. Don't forget about magnesium in some form...either soaking in epsom salts, taking a quality supplement or using a topical lotion like Morton's new Epsom lotion.
Thank-You! This is new information for me. How much is recommended, or should I inquire when I see my Doctor?

Yoga is good. It teaches helpful breathing which can lessen nerve symptoms due to poor breathing habits. Just don't strain anything with some of the more difficult moves.
Don't worry, my body will start yelling at me if I overdo it!

There are things that help PN for most people. But a "cure" is not realistic for many. Stopping progression and lessening discomfort is a serious goal, everyone here can perhaps attain.

The exception is the progressive hereditary forms of PN called CMT (Charcot Marie Tooth) disease. Do any of your family relatives have PN, and it is progressing?

No, I am the only one but I'd like to hear more about CMT. I've had 20+ years of dental reconstruction and the damage was thought to be caused by drymouth from certain meds, drinking too much soda, also.

I hope I am doing this correctly. You all are so kind and make me feel less reticent about talking about this. Only a few family members know so far as not to upset them further with the "Oh, here's a new diagnosis" talk. I have asthma, eczema and rosacea, also. Non-steroid inhaler used for asthma and doxycycline(50 mg) used daily for rosacea. I take Diflucan 2 or 3 times a month to stave off yeast infections (Ah, the glory of being a women

)I am also in menopause, so this is a real roller-coaster ride, for lack of a better term!

It's a lot to deal with, but I am still here on Earth so I figure I might be doing something right!

en bloc · 09-28-2013, 09:03 PM

Have you been tested for Sjogren's? With the dry mouth, dental problems (you are pretty young for 20+ years of dental work), asthma, and yeast infections bad enough for diflucan that often, you should consider testing for Sjogren's (which can cause PN).

NAS7 · 09-28-2013, 10:34 PM

My dentist asked me that a long while back. My Dr. at the time was certain I had lupus and kept checking for it. She ignored the Sjogren's suggestion completely. (I had to fire her and get a new Dr. as she just was stuck in her certainty that I had lupus.) Only one of the many blood tests she did indicated it "could be a possiblity." I thought that was a little nutty. Either you have it or you don't. Happy to say my next Dr. was the best, but he passed in 2010 due to complications of diabetes.
How do they test for Sjogren's? I've only encountered it one time.
I Thank-You all again, you have given me great information and I am so glad to be able to talk with others who have this...too bad that we aren't just dreadfully healthy and planning a lunch date instead!

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