I took pictures, or tried to show her on my iphone, she glanced at them. I took notes, medical papers, articles on em, etc, she wasnt interested. When she walked in she immediately noticed my feet and said, oh wow. Actually, they looked great, little swelling, little blue, not in a flare. She thought they looked horrid. She said, you dont consider this swollen? I said no, not compared to how bad they get, this is very little. She was surprised.

I am stuck with her for now. Insurance requires referral, she was referred, she is running tests, I go back in three weeks. But when I go back, I wont be the timid mouse with a restrained mouth like I was this time. I literally lost my voice in trying to please her and that wont happen again considering she already appears to dislike me.

I agree, medication is not meant to take periodically. My mom just said the same thing to me, along with someone at my EM forum. I guess I will try it for a week. I dunno. I feel lost and irrationally scared of medication.

Fear. My biggest enemy, that keeps me in bondage.

I'd be willing to bet that everyone here has experienced a similar doctor appointment as you described...I know I have on more then one occasion. No one knows exactly what to expect from a new doctor, how they will respond to your symptoms/problems, how open they will be to your feelings on what's happening, whether they will understand your fears, or have any desire to help you. Just as you went into the room with ideas on how you wanted the appointment to go, the doctor had her own thoughts...and obviously they were on opposite ends of the spectrum. Been there, done that!

Now that you've gotten through it and sort of know her thinking (not that you agree with it--but know where she stands), make a plan of attack, so to speak. Go into that next appointment with firm footing on what you're looking for and make sure she hears your expectations.

In the meantime (next 3 weeks), you can see whether the Neurontin is helpful. Make sure to get a copy of the labs she ran. Print out some pics for better viewing then on a phone. And I'd ask her point blank why she's dismissing the EM...since she seen at least some evidence of your feet. She may have a valid reason...but not explaining it to you when you brought it up isn't acceptable. Either way, you asked a question about EM and she needs to answer it in detail.

Stay strong (which it sounds like you are) and prepare for the next appointment.

Well, so much for the great sleep and pain relief with taking the pain meds. Last nights first run was exciting as I got to sleep 5 hours, but tonight not so. Took it and slept one hour, then up and in water, back to sleep one hour, back up.

Thought I would get more than one nights help but maybe it was a fluke the first night.

Stacey,

These type of medications take time to build up in your system to work efficiently. The first night's relief was probably because your body was not used to such a drug, so reacted more than last night.

Don't give up yet. Give the medication about four or five days, then you should see a more typical example of what pain relief, if any, you can expect.

I'm probably looking at living with this pain for about 40 years too. I agree with en bloc.... Why suffer now when in 20yrs time these few months you are putting it off will feel like a drop in the ocean, irrelevant.

I live on organically grown foods and use Earth friendly products. I hate knowing I'm poisoning my body with these drugs that I'm obviously reliant on (addicted to) by now. But, the only other option is to live in severe pain.

Think about the STRESS your body is going through being in pain. That stress is taking its toll, constantly! Your heart, blood pressure, etc. are struggling under the pressure of the pain.

If you can control that pain, your body will be able to come back into balance. I've seen it with my blood pressure.

I guess what I'm saying is, you are damned if you do, but you are equally damned if you don't. You are not helping your body by letting it live in a state of pain.

So, isn't it better to be damned and relatively pain free?

That is how I came to decide. Ohh and also, I believe that in the next decade or two they will find a much much better way to treat cronic pain. Actually, I think it's less than a decade. So, I don't believe we will be on these highly addictive drugs for the next 40 years.

Hoping you find the relief I did, and so many others too. I sleep 5 hours every night. You will too.

Debbie, thank you, and I agree, I did think the same thing, just keep on trying it for awhile and I will, what choice do I have.

My fear here is the swelling/inflamation. Which apparently is normal for EM but mine will NOT go down without water emersion. Even if I make it 5 hours sleeping, when I wake up the ONLY thing that will shrink and stop flare is water bucket.

Also, this new thing with my diuretic. On the days I do not take my diuretic my feet are worse. This all points to swelling and inflamation but I am not sure what to do about it. I dont want to take this diuretic every day but last night was way worse and it is because I went two days without the diuretic.

You are so right, damned if we do, damned if we don't. I am not sure what to do right now.

It will take more then 4-5 days. And you will likely have to adjust to the proper dose. Most people aren't lucky enough to start out at the perfect dose...it takes time.

You have 3 weeks until the next appointment. That will give you an indication of whether it is helping or even taking the edge off. Then an adjustment can be made if you notice any improvement but still not significant improvement.

Just curious...do others with EM (from the forum you visit) have improvement with the water bucket? Do you have any reduction in swelling with your feet elevated?

Yes, swelling is part of it. As with PN, everyone is different, and I am new to the board so most there have already found what works for them so to speak. They all say they had to use water at some point but worked hard to get away from it as it can cause skin to break down and a vicious cycle, but admit there are times when it is all that works.

They all completely agree using water as a LAST resort.

I guess after reading all day about gaba, retaining water/bloat/swelling is a side effect, so that explains why my diuretic is helping remove it thus helping with pain. So, the gaba side effect is making it worse if it cause water retention in my feet.

The side effects are already kicking in, ringing in my ear today is so loud I want to pull my hair out. Constipated for the first time in a decade. And beyond hungry, even 30 min after I eat, I get hungry, which apparently is "normal" along with weight gain. And what the heck, I read it can cause tooth decay?????

Lord help me.

I remember getting bad side effects when I started on Lyrica. Headaches (I am not typically a headachy person, so this worried me). Constipation for the first time in my adult life. At my 2week follow up appointment I told my Doctor that I didn't think these tablets were right for me, the side effects were strong.

He asked me to stick it out, that my body would get used to the new drug. So I stuck with it. A few weeks later I told him the symptoms were improving a little but the pain was still there. Not as strong mind you. So he told me to take a higher dose. I thought he was crazy but I did it anyway.

What I found is, although on a higher dose, my symptoms did not get any worse. I found this to be the case as we slowly increase more and more until I was almost pain free, enough to live quite normally again. At about that time the symptoms went away.

Your experience may be different, but that is how things worked out for me. I stuck with it, through the nasty symptoms, and it fixed itself.

Ohhhhh and to help with the hunger symptom, my Doctor also put me on Duromine (an appetite supressant). Yes, it's a nasty drug, horrible. But, I took it for a few months while my body settled into the Lyrica, and it worked to stop, and I mean completely stop, all hunger.

I too hold fluid, your post has me wondering if a Duiretic might help me.

Hope you start to feel pain relief

Side effects for many drugs, including Neurontin, can lessen after taking it for a while. Don't give up hope just yet. You were having fluid retention before you started the Neurontin (since you reported the diuretic helped), so this may not be from the medication.

Hoping it works out for you. Maybe keep notes/journal of your symptoms to track improvement or pain or side-effect... or worsening.

Great advice Debbie and EnBloc. The fact is, there isn't a cure for many of us, certainly not for hereditary PN like mine, and pain medication can be a blessing.

Most of us do not receive any benefit from the Neurontin until it has been titrated up at least to the 1800 mg. mark- usually 3 doses of 600 mg. each. I actually lost weight on it, so it does not always cause weight gain.
Pain management is is trial and error process, and there are specific protocols that doctors are expected to follow in order to protect themselves. If you have a diagnosis of neuropathy they almost invariably try Neurontin or Lyrica first, often followed by an antidepressant when it has reached the therapeutic dose. Only if the pain is still severe and the doctor is willing will they then prescribe an opiate.
If you expect too much from a beginning dose of Neurontin you will likely be disappointed. Early side effects, as en bloc said, often do not continue and others may appear. I did not have blurry vision until several years into taking Neurontin.
Many of us here with severely painful and disabling conditions are only able to have an acceptable quality of life on medications which cause dependence. Dependence is not addiction, addiction is a psychological, not physiological need.
Live 30 years on them? It sounds a lot better than 30 years without them in this kind of pain, or the pain that you describe.