[Steff]

I may have posted this before. I cannot remember anything anymore. The burning tingling pain in my feet and legs has always gone up, but I when I sit now after walking two feet, my thighs are burning and it spreads into my plevic floor and stomach. So now I cant walk, cant sit. Anyone have symtoms like this? My appointment for a new doc is not until next week and my EMG isnt until the 24th
steff

[ConsiderThis]

(((((((Steff))))))))

I'm so sorry you're having this scary problem.

I don't have the same kind of pain level as you at all, but I do have trouble with my left foot, and previously both my feet were very painful.

I'm so tired from the court stress, but what I want to say is that the days I soak my feet in Epsom salts they are better. Really it is only my left foot that is a problem right now.

Last night it ached and burned a little and I realized I hadn't soaked it, and I didn't soak it today either because it was pouring outside and I heat my water with the sun... so that wasn't happening.

Do try an Epsom salts bath if you can move well enough to still take baths. I can't, which is why I soak my feet. But compresses are good, too.

I explain compresses on my Epsom salts page on my web site.

Gosh I hope you are feeling better!

((((((((((Steff))))))))))))

[dahlek]

IF things are spreading and doing it somewhat fast?
I Suggest that you call your Docs' neuro or GP's service NOW and get to the very BEST ER in the area? I could be something hatching that is NOT good and the sooner that you get to the ER and after waiting the 14 hours before being seen ....get treated! Just let your docs KNOW of the changes that are going on soo fast and get to the ER! PLEASE! Then let us know how you are doing?
Even if your insurance doesn't cover the BEST ER in the area, GO THERE as it could save you lots in medical error pay-backs in the long term...
PROMISE! PLEASE???? - j

[ConsiderThis]

Boy, it's amazing how differently we think about what should be done.

I was worried because Steff wrote her message yesterday and I didn't want her to think no one was concerned just because there weren't any replies.

For me, excessive money being spent when I have so little is extremely distressing and so it makes me worse physically because of the stress.

So I try to do things that are within my limited means, that I know help.

[Yorkiemom]

I don't believe she has anything that is helping her much Consider This. I think I would try to get the doctor to address this by calling him. My recent trip to the ER here made me realize that they do not want much to do with prescribing for pain...

I am not sure what to suggest. I have had plenty of burning, which began above the knees, spread to calves and then gradually spread. If the sensory nerves are the problem, I don't know if the EMG and Nerve Conduction studies will necessarily show anything or not. I believe the way to determine sensory nerve involvement is with a punch biopsy-which I think is called an Intrapidermal biopsy.

Starting Prednisone at the very first, rather than later on, might have helped me, but it is a moot point, because no one knew what to do, and never even considered trying this for several months. Prednisone was just a shot in the dark, when they didn't know what else to try. I had a really hard time getting anyone to prescribe pain medication at first...

[Wing42]

Originally Posted by Steff

I may have posted this before. I cannot remember anything anymore. The burning tingling pain in my feet and legs has always gone up, but I when I sit now after walking two feet, my thighs are burning and it spreads into my plevic floor and stomach. So now I cant walk, cant sit. Anyone have symtoms like this? My appointment for a new doc is not until next week and my EMG isnt until the 24th
steff

Most of us have the experience of the terrifying quick onset and worsening symptoms, that settle down after a month or two and either start getting better, stay the same, or progress much more slowly. You have a right to be scared. I was almost in a panic when my PN started, especially since the doctors were not helpful. Please consider this:

- Strong negative emotion makes PN symptoms much worse for days. Fear, anger, frustration, etc. start the flight/fight syndrome where our body prepares for quick action and possible injury. Our adrenal glands dump cortisone, the pituitary tells the body to increase production of adrenalin to prime the muscles and reduce bleeding in injury, the liver dumps glucose into the blood to prepare for action, and the pancreas secrete more insulin to use the glucose. All of which is hard on your blood circulation, nerves and your psyche.

- When no action such as running or fighting take place, the glands become exhausted and stop producing these needed hormones for a time. That is also hard on your blood circulation, nerves and your psyche.

- In my personal experience, the extreme increase in pain, tingling, and numbness lasts about three days if I calm down, indefinitely if I don't.

- You have a right to be scared, but since running or fighting won't solve the problem, fear will only make things worse. Relax if you can. Accept that you are ill. Nobody knows what the future holds. You might feel better next week and start healing, or you might be killed by a falling meteorite tomorrow. It helps to not think about the future, and just live here and now, enjoying life as much as you can.

- Empower yourself. What you can do for yourself is to get the help and the knowledge you need to take other action in a cool calculating way without emotion.

Read or skim the entire "Sticky" section, learning what you need, and following links until you feel that you have a handle on possible causes for your symptoms, possible therapies, who to turn to for help, and what a good diagnostic procedure for PN looks like. It's all in the "Stickies" and sites the postings link to. The more you learn and the more you educate yourself and take action based on what you learn, the less fear you'll feel, giving your body its best chance to start healing.

- Rapid onset like you're talking about is typical, especially in cases of toxic exposure such as to drugs (a list is in the Stickies), onset of diabetes, or infections such as Lyme disease.

- We can't know all about you that you know, even the doctors among us. You can fail to tell us something of critical importance to understanding your problem because you don't know it's important or because you are concerned with looking good. For example, would you volunteer the information that you have AIDS or are alcoholic if that were the case? BUT, if you educate yourself, you'll know what's important, and then the discussion in this forum would be much more valuable and empowering to you.


I wouldn't wish what you are going through, or what I went through the first three years of PN on anybody. Just know that things will settle down, you can get control over your life and health if you're determined to, and you have people here who care about you even though we've never met you. Take care.

P.S. It's helpful to list the area you live in. Besides creating an emotional bond, people in your area might PM you (Personal Message) with names of doctors, offers of help, etc. If it's a small town and you're concerned about anonymity, just something like "North East Kansas" would serve the purpose.

[ConsiderThis]

Originally Posted by Yorkiemom

I don't believe she has anything that is helping her much Consider This. I think I would try to get the doctor to address this by calling him. My recent trip to the ER here made me realize that they do not want much to do with prescribing for pain...

I am not sure what to suggest. I have had plenty of burning, which began above the knees, spread to calves and then gradually spread. If the sensory nerves are the problem, I don't know if the EMG and Nerve Conduction studies will necessarily show anything or not. I believe the way to determine sensory nerve involvement is with a punch biopsy-which I think is called an Intrapidermal biopsy.

Starting Prednisone at the very first, rather than later on, might have helped me, but it is a moot point, because no one knew what to do, and never even considered trying this for several months. Prednisone was just a shot in the dark, when they didn't know what else to try. I had a really hard time getting anyone to prescribe pain medication at first...

They've been having a lot more on telly news about it, so it may change in favor of helping to relieve pain.

My ER experiences were not encouraging.

And my friend's son who was in his 20s died at the hospital... for no good reason. Gosh, it is still upsetting to me.

After I went to the ER I prayed that I could go home, because I thought that was my best chance.

Are you still feeling better since your surgery? I hope so.

I still think that a lot of illness has to do with stress, and that old fashioned things like Epsom salts baths work on that level, as well as on the level of ions... I wish I didn't have this stupid mental disability. I can't remember how the ion thing works. I just know that the hydrogen sulfide ions were too big to pass naturally out of my body, and that the Epsom salts some how helped eliminate some of them...

I told you that Gregory Peck had Yorkies, right?

I'm unfocused... except that I very much like your pic of the little teacup dog....

[ConsiderThis]

Wow, Wing... I wonder if it was you who told me about fish oil years ago. I bet it was and I confused you with someone else.

It's an interesting thing... how we often don't mention the most important thing... we may not even know it.

I was so sure when I was living in the hydrogen sulfide that my B12 deficiency was getting worse based on the fact my memory began to get worse again and I was having a lot of sensation problems and falling a lot from lack of balance.

(I'm sitting here shaking my head.)

I don't think there was any way of knowing about the privy pit under my bedroom any earlier...

But the strange thing is, that if I'd just given myself a LOT more B12 shots all that time it might not have hurt my nerves so badly. I say that because so many of the symptoms I had from the toxin have gone nearly away since I had MASSES of B12 shots.

What I still don't quite understand is how the B12 could help some neurological symptoms so much, but not heal the nerves in my stomach ... I still can't feel it when my stomach growls... and my stomach muscles still pull me over when I'm stressed...

Well, no clue.

Any ideas on the subject that you might offer would be much appreciated.

[Yorkiemom]

Hi all:

The thing is that she has a foreign substance continually present in her body that may not be able to be completely excreted. In a similar situation, my old Immunologist said that something was needed to calm down the nervous system, decrease the inflammation and pain and hopefully, in time, the body would adjust to its presence.

As far as Prednisone goes, you all know I am on it and have been for quite some time. In the beginning though, a Dose Pak did little and the steroid dose was then adjusted to 3 times daily and gradually decreased to once a day as I could stand cutting the dose. Yes, it is a terrible drug in some ways, but when you hurt like h*ll, sometimes you get no other choice... I wish I had one, I sure would opt for it... Oh, and Ativan was a help getting through that.

I hope she can get some help. That burning... Been there. Done that... Not fun...

Sorry Steff, wish I could help more. Hang in there and stay with us...

Cathie

P.S. What I got in the ER, was 2 either Tylenol or 2 Acetaminophen-neither of which were prescription...

P.S. I know this sounds like a dumb question, but have you tried any regular Alka Seltzer?

[Steff]

thank you for your info i will take all into consideration as i am trying to work out what is going on
i do not have other diseases except fibro, i live in so ca.
i try to relax but i have grest stressors-
adult children have chronic illness
money
lonelines
our famioly is nothing like any other-we were all fine and then bingo-
we lost everything all of us in a different way-
too spooky to wrap the brain around
i know the cause of the pain is the prolotherapy shots that have done something to my nerves or muscles or body.
havent figured that out yet.
dont know if it undo able
reading sticky notes
nothing fits just right yet=
trying

thanks
steff