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Old 02-13-2009, 03:38 PM #1
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Default WHY?! Ups and downs

The last two days have been REALLY bad. Why? Before that I had a few fairly good days where I wondered could things be getting better due to who knows what (recommended supplements, time, diet, emotional state, etc.)
This seems to happen a lot since I first started about a year and a half ago. I do feel things are slowly getting worse but why the big ups and downs. I have been trying to keep track of anything that might or might not be contributing. I have carefully tracked diets, weather, emotional state, alcohol, any new meds, etc. AND nothing fits. Does anybody else go through these ups and downs? Am I missing something really obvious?
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Old 02-13-2009, 10:32 PM #2
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I share your feelings on this ... new world. I have good days and bad days. Sounds like you have a similar situation. Weird? Frustrating?

I have seen a very good Neurologist and a very good Rheumatologist and don't know much more than I did a few months ago. My PN and Trigeminal Neuralgia may have been masked while I was on morphine and other opiates. I started my detox last July 19th (on my own, as my Pain Med doctor's staff were horrible ... would not let me see him ... prescribed the wrong drugs for detox, etc.).... my RLS went nuts on the drugs they gave me. My Neurologist got that straightened out, then my Trigeminal Neuralgia started. We got that stopped.

Now my feet will quit working some times, other times my knees will not bear weight. My various bones, joints, etc. malfunction and are painful at various times. The pain usually only lasts about 10-30 minutes, with exceptions. My Rheumatologist has started finding out what it "isn't" and has set up a second battery of tests, MRI's, etc.

So my weirdness may slow down if this Rheumatologist is as good as they say he is. Thirteen xrays and over 18 blood tests so far. As I say, he is narrowing down the problems. Hopefully you can find a doctor to help you find your way through this "Mine Field" we seem to have wandered into. I have fallen so many times my wife just steps over me (after asking if I am ok) and waits for me to "get better". I have a Power Chair to use in the house and I am getting pretty good with it. (My Service Dog still prefers to jump up in my lap so I won't run over her feet.

sbvcrn - best wishes on finding some answers.
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Old 02-14-2009, 09:59 AM #3
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Barometric pressure and emotional stress are big factors.
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Old 02-14-2009, 10:49 AM #4
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Lightbulb

The ups and downs are very confusing.

Over New Year's holiday I had the worst foot issues I have had in years. Then 2 weeks later I caught a very long nasty virus.
I expected my feet to be unbearable...but what happened?
They were painless. Part of this was due to the dextromethorphan I had to take for the endless terrible coughing, but you know, only part of the pain has returned since I stopped taking the cough suppressant. I am still confused.

Food can trigger me, especially MSG. (also sugar and pototoes seem difficult)

And the weather is a big trigger too. We had 3 days of "warm" weather, and my major knee issue flared up big time. My feet were only so so. Not bad. Now we have snow again! <shrugs>
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Old 02-14-2009, 05:55 PM #5
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Barometric Pressure? Hmmmm. Low pressure is usually stormy and high pressure is fair wx.

We used to be on our boat a lot, but it has "central heat/air" like our house, so the outside weather (cold, wet, etc.) does not effect the "Living Room" part.

Emotional stress -- THAT would make sense in my case.

Foods and medications are potential problem areas too. I am down to 17 prescription, mostly Respiratory, but they can cause all kinds of side effects. mrsD has been wonderful. I have a good list of vitamins to take, and I take them every day.

It seems I hear a lot about the B vitamins in the PN crowd. I am taking the B Complex vitamins from Walmart. The brand mrsD said was ok to use.

I have been off chocolate for a little over 6months, but it is calling my name. So I made a double batch of Oatmeal Cookies. Fattening, but better than pure sugar in candy. At least a little better?? I put raisins and walnuts in them. Then I store them on the top shelf in one of our closets. If I want one, I have to get the step stool, climb up, then climb back down,etc. It isn't perfect, but it slows me down some.
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Old 02-15-2009, 04:19 PM #6
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I can sure relate here. Last week, I had a few days where my pain level dropped way down, and I actually got that brief silly notion that maybe, just maybe I might be getting better. Then last night as I settled down to watch "Singing in the Rain" with my beloved Gene Kelly, the pain and burning started coming on like gangbusters. I immediately tried to think about what could have happened. Two things were different. I ate deep dish pizza with lots of crushed tomato sauce and cheese. The other thing is it had been building up to a big rain and wind storm all day, and then it hit last night. The food? The weather? Both?

Anyway the ups and downs does appear to hit so many with PN. Of course we all have that dream that when we hit an "up" time, it just keeps going and going and never ends.....
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Old 02-16-2009, 07:17 AM #7
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Hope, my vote is on the weather. Changes in weather can be very difficult. Cold weather is worse for me, yet some say hot weather is worse. Neuropathy is a giant with it's own mind.

DllfoB Complex is ok, though B12 may be the next step, especially when you are taking a lot of meds. Meds tend to deplete us of necessary nutrients. I have always hated taking something to offset the side effects of meds, yet often times it's necessary. Try starting out with 1000mcg of methylcobalamin B12, see if it helps.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 02-16-2009, 11:53 AM #8
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Default I sure can relate

Good days, okay days and horrible days. It is all part of the cycle for me. When my feet are feeling okay to good, I am in 7th heaven. But, when the burning and pain becomes overwhelming, I just try to focus on this too shall pass...and it does. Food, alcohol, stress, physical activity and weather? Who really knows for sure if and what really makes it worse or better. There are times when I truly cannot attach the pain to a specific category. It is very frustrating. I am very fortunate that my feet rarely both me when I am sleeping.
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Old 02-16-2009, 04:11 PM #9
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I have improved a lot, i have many good days and a few days. I am tanking many supplements, almost every supplement that has been listed here and a special one that i was prescribed from a local doctor who is great. I try to eat healthy, thoug it is very difficult for me to stay away from chocolate, it is just irrisistible!!. I've been trying some candy for diabetics that has a sweetener made form rice...

I do exercise. I feel better not while doing exercise, but the next day is usually better if i did exercise the day before.

I guess ist just a zillion factors that can affect us, from air pollution to diet or stress.

Stress is usually the most obvious trigger for my symtoms.

I am also on lyrica (150 mg). That helps me too.

Warm weather is always better for me. It is difficult to stand clothes on my legs, but i discovered some tights that for some reason don't bother me....

I try to stay away form everything that can affect me and i try to stay happy... I have learned to be happy most times even if i have PN. I hope you manage that too.

Be good!
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