Today has been one of those down days. I just want to cry all day. I am so tired of hurting. I keep telling myself tomorrow will be better. I haven't slept hardly at all this week. Which probably doesn't help how I am feeling.

Then I tell myself "Others are suffering more than me, quit feeling sorry for yourself". But it just doesn't really help how I am feeling. I want to be brave and strong but somedays are just so hard. I am strong in my faith, but somedays it just feels like I am walking alone.

I have a husband of 27 years who is very supportive, but he has got to get tired of dealing with my illness.

I am sure plenty of you go through the same thing. How do you shake it or do you just bear with it and know a better day will come?

Welcome and i'm sorry you feel so bad,everything you have said the
PN forum or family have been through. You will be hearing from more
soon,and be given some good advice. I just wanted you to know
you have a right to your tears,and it is hard to sleep when your
in pain. And i'm sure your husband loves you very much.

Could you tell us more about your PN, or what your Dr. had said.
Or perhaps what tests you have had. There is imformation and
a lot of smart and kind people who will be willing to help. If there
there is there is anything you don't understand,just speak up.
I think you will like it here,i read NeuroTalk before i would post
so you have taken the first step. I hope your resting and feeling
a little beeter soon. Sue

I understand and can relate. I think one of the best parts and huge part I miss in the program I just left at the pain clinic was the others support. I'm going to look into a support group, could you do the same possibly? You have the right to feel the way you do. In life there always be someone worse or better but it does not take away from what your going through. Is there anyone else you could reach out to for support? Any types of coping you have found helpful? I mean like a bath,yoga,relaxation tapes? Try to take 1 day at a time or even one moment. If you want an email buddy I'm always here. Take care.

Oh Julie

((((((((Julie))))))))

I think it's the worst when the pain keeps us from sleeping. Lack of sleep makes the pain worse (at least for me) and then everything craters.

I agree, thinking about someone else suffering more just doesn't cut it for me.

I wish I could show you how much difference a LOT of B12 injections have made for me.

If you try B12, though, and you aren't going to get a prescription for injections, then get the 5mg Methylcobalamin lozenges. They will make a difference.

But... when they didn't make my horrid horrid back pain go away I did some further reading and discovered that I need to give my body additional amino acids if I expect my body to repair damaged nerves.
http://www.health-boundaries-bite.co...alNetwork.html


Chicken breasts worked great. But some days there was just too much pain to stand long enough to cut up an onion to cook them with, or even add seasonings.

So then I heard about Whey amino acids and I bought that which I can pop into my coffee in the morning... so easy. So this way I consistently do it.

And the other thing is magnesium. More of it than calcium... and some with anything that contains calcium.

Recently I've been getting eight hours of sleep a night, and it feels so good.

If I didn't have this extremely stressful court stuff, I'd be feelin' SOOOO dynamite!

Oh, and I think to get the use of the magnesium you have to take it with vitamin C or hydrochloric acid, only not everyone should take hydrochloric...

Here's my page on foods containing magnesium (and some other info)
http://www.health-boundaries-bite.co...Magnesium.html

(Nearly everyone who comes to that page, and a lot of people come, find it through a search engine... which is so fun to think about. )

(((((((((Julie)))))))))

I hope to hear that you are sleeping more and feeling better.

A year an a half a go I was diagnoised with PN. Since then many test have been ran. 3 MRI's which revealed I am having mini strokes, a Lumbar Puncture which showed nothing, and lots of blood work! After much reading, I believe I have had PN for at least 12 years. I never said anything to my doctors because I always thought they would just tell me it was my weight.

A year ago, one of the blood test done was for my B-12 and B-6. My B-12 was fine, but my blood showed no B-6 in my system. I was put on a small doseage (50 mg) of B-6 and told to be tested again in 6 months. In December I was tested and it was showing my B-6 levels were too high. But no one followed up with me on it. The first part of this year, I switched to a new Neurologist. He couldn't find any reason for my NP. When we ask when do we think about sending me somewhere else, he started looking through my records and found the B-6 levels. He cut me down to 25 mg a day and I was tested this week to see how my level is now. He says I must be very sensitive to B-6. I wonder if I have had a deficency all my life or adult life? My doctor did tell me most people are deficent in B-12, not B-6.

During the past year and a half, my PN has progressed from my feet, up my legs but numb up to my knees, and pain in my hands and arms, with my fingers being numb.

During all of this, I also became postive for Diabetes. My doctor doesn't think it is related to the PN because of how much damage I have from the PN. Diabetes runs in my family. My dad, my mom and at least 2 of my brothers. I was a sitting duck! I was tested when I was first diagnoised with PN and the levels were fine. 6 Months later I was tested twice and confirmed to have diabetes. So far I have been able to control it with with diet. My levels stay pretty good. My last A1-C was 6.0. And I have lost 46 lbs so far.

The vitamines scare me now, because knowing how much damage they can do with too little or too much. How does a person know how much to take?
I have always taken a multivitamine. Because my Iron always seem too low, I take prenatel vitamines. That seems to give me the right amount of Iron.

I hope this helps to give some insight.

Julie:

You said: "I take prenatel vitamines. That seems to give me the right amount of Iron."

Julie, are you pregnant???

Don't worry about taking too much B-12 (Unless you are pregnant, then I would check with the experts on these boards).
I take 5000 each morning and it really helped my Neuropathy.

You sound so down. While I do not have your pain, my Alan most definitely did up until a few years ago. He was on the fentanyl patch and vicodin. I never understood what he was going through until I went to the podiatrist and he used a vibrating tool on my feet. I had never had a buzz until he did the tool. Well, forget it... when I got home, my feet were burning, buzzing, tingling, the whole thing.... I just looked at Alan and he said "welcome to my world". He's had this for 18 years. I do not know how he has put up with this.

But he went to a chiropractic neurologist who did adjustments (it has nothing to do with his back by the way, but the chiropractic/neurologist treats the whole body). Suffice it to say, my husband became a different person after Dr. Theirl went to work on him. He went there at 267 and couldn't bend his legs (nothing to do with neuropathy, he was just a man who never exercised and his neuropathy ruled his life). Well, Dr. Theirl had him moving, exercising, joining a gym. And since he got his stent and did cardiac rehab, Alan is not on any pain meds whatsoever. I also massage his body every day. Helps the circulation, etc.

Alan is also on IVIG once a month now. He is also not a diabetic and never was.

He also just started the Methyl B-12 5000 once a day because he saw how I improved after being on this supplement.

Pain is a bummer and neuropathy pain is a triple bummer.

Maybe you can find a peripheral neuropathy specialist in your area? Or even better, a chiropractic/neurologist??? Saved my husband's sanity, believe this.

And congrats big time for losing 46 lbs.

I went to Cornell yesterday, I was weighed (they are not allowed to tell me what I weigh). I lost a grand total of 2 and half lbs in two months.

Now that is hysterical because I eat like a fitness guru.

But that's okay. I lost most of my weight.

I'll lose the rest. I'm stepping up my exercise routine. Not easy when you're almost 60 years old, but if I don't, I'll pay for it in the long run.

So here's hoping you'll feel better soon.

Oh, and one more thing. You are not sleeping because of the pain, right??

Is there any reason that you can't take something to help you sleep.

Alan takes a some alprazolam and he drifts off. He would never sleep if he didn't do this. Sometimes you need something. And we all have to sleep right?

See what your doctor says about this.

All the best

Melody

Hi Julie,

Wow, 46 pounds, I am so in awe!!!!!!!!!!!!!!!!!!!!!!

(I'm afraid to weigh myself because I become obsessed, which quickly leads to depression. but I have lost 10 inches around my waist... and need to lose another 10.)

What is so worrying to me is that doctors are constantly telling patients that their B12 test was normal and that they are just fine for B12.

But ... do you know what your level was?

I was told I could not have a B12 shot when my B12 level topped 180, because my "B12 level was normal".

So I suffered.

Now, because I kept notes, I know that when my level falls below 900 that I begin to feel depressed.

But I bet my level is way WAY higher than 2000, now.

That's because I have a lot of B12 shots, because without them I quickly have PN pain and loss of feeling in my feet, which is SOOOOO dangerous. (Take it from me, I got tetanus because I couldn't feel a broken bit of darning needle in my toe.)

B12 is not a dangerous vitamin. You can take vast/huge amounts of it because what your body doesn't need it excretes.

And the thing with B12 is that it has to be the methylcobalamin form before our bodies can use it.

So when I have a B12 shot (cyanocobalamin) my body turns some of that into the usable methylcobalamin, and then that can rebuild my nerves.

What makes you think that vitamin B12 is dangerous? or vitamin C...

?

Julie,

Some people are deficient in B6, and either deficiency or overload of that vitamin can cause problems. It sounds like you may be one of those who needs the P-5-P type of B6 (the body can use it as is, and does not have to convert the usual pyridoxine hcl to usable B6.

B12 is safe, and the testing most doctors do cannot rule out deficiency.

There is a lot of good information on supplements. Take a look at the vitamin deficiency forum here, where you can search for info on individual ones. Most doctors don't have a clue about nutrients, so it's a good idea about to learn about them yourself.

rose

Oh, good point. I forgot that I regularly take melatonin.

And... I think this may be a bit bizarre, but the Serrapeptase helps me sleep... but I think it's because I used to have to take Dalmane to get any sleep, the 30mg some of the time, sometimes I split them up into smaller doses...

So what I think happens is that when I take the Serrapeptase capsule, my body sees only the capsule and that it's night time, and my body thinks, "Dalmane!"

Sort of like those dogs that think they're getting bacon in the tv commercials.

Because I take it during the night, when I wake up at 4 a.m. or 6 a.m. which used to be a time I couldn't go back to sleep, I now take a serrapeptase and in no time at all I'm getting several hours more of sound, I mean SOUND sleep.



Thanks for reminding me.

No, I am not pregnante. Thank God, My kids are all grown and I would hate to start over now. LOL. Prenatel vitamines just seem to have a higher level of Iron than other vitamines and this amount seems to be just right for me.
I have very heavy menstral cycles (always have) and I think that probably doesn't help my situation.

Thanks for all your encouragement and advice. I don't know what my levels were on the B-12 and B-6. Only what the doctor said and at the time I didn't think to ask numbers. I will ask him this week when he gets the results back from my test this past week.

I am feeling a little better today. I got a few hours of sleep last night and got to see my 2 year old grandson this morning. He is such a character. I smile everytime I think of him and the funny things he does.