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Old 01-08-2013, 10:02 PM #11
keepingfaith keepingfaith is offline
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That's sweet! It's nice to have people who are there for you. It's priceless. Thanks for all your input it's been nice talking to you all because I have been dealing with this on my own for over a year. My husband knows of it, but he totally can't relate and he works so much I'm left to take care of my 2 year old by myself a lot which keeps me going but at the same time it gets me down, if that makes sense.
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Old 01-09-2013, 09:42 AM #12
Idiopathic PN Idiopathic PN is offline
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My feet do not "burn" but its painful. Its like a hard object pressing at the sides of my ankles. Its difficult to describe. I cannot stand for a long time. But, I exercise regularly. I walk on the treadmill for 30-35 mins on speed of "3" and incline of "7". On some days, when I cannot tolerate the treadmill, I walk outdoor. The strange thing with me is when I start walking, the pain becomes bearable.

I think exercise becomes bearable to me is because at night, either I soaked my feet in warm water with epsom salt or use the Epsom It lotion (courtesy of Mrs.D). I do that every night to make moving bearable for me. Actually, as an added benefit for me the Epsom It Lotion has lessened the stiffness of my fingers.

Even how painful my feet are, I always make it a point to move around. It may not improve my PN but it surely helps my total well-being.
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Old 01-09-2013, 10:09 AM #13
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Originally Posted by Idiopathic PN View Post
My feet do not "burn" but its painful. Its like a hard object pressing at the sides of my ankles. Its difficult to describe. I cannot stand for a long time. But, I exercise regularly. I walk on the treadmill for 30-35 mins on speed of "3" and incline of "7". On some days, when I cannot tolerate the treadmill, I walk outdoor. The strange thing with me is when I start walking, the pain becomes bearable.

I think exercise becomes bearable to me is because at night, either I soaked my feet in warm water with epsom salt or use the Epsom It lotion (courtesy of Mrs.D). I do that every night to make moving bearable for me. Actually, as an added benefit for me the Epsom It Lotion has lessened the stiffness of my fingers.

Even how painful my feet are, I always make it a point to move around. It may not improve my PN but it surely helps my total well-being.
I agree walking is more bearable than standing. My PN is more of a burning/freezing feeling during the day and then at night it's an aggressive tingle that effects mostly my legs. Almost like RLS. Standing in one spot makes my legs ache and that's when they swell. I have tried walking but that usually makes them swell also. I will try the soaking but sometimes I'm sensitive to the heat.
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Old 01-09-2013, 10:23 AM #14
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I agree walking is more bearable than standing. My PN is more of a burning/freezing feeling during the day and then at night it's an aggressive tingle that effects mostly my legs. Almost like RLS. Standing in one spot makes my legs ache and that's when they swell. I have tried walking but that usually makes them swell also. I will try the soaking but sometimes I'm sensitive to the heat.
The very first time I soaked my feet, I experienced a burning, painful sensations. I mentioned this to Mrs.D but she said she never experienced it.

I tried using it again and after a while the sensation of burning disappears. So I am using it now every night. As you know our bodies react to certain medications/supplements different ways.

My sister had this episode of swelling feet and legs. She was not taking any diuretic medications. But, she has varicose veins and she stands a lot being a teacher. This was resolved by wearing the compression stockings. Of course, this will not apply to you because you might not tolerate wearing tight stockings. Have you consulted a doctor about the swelling?
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Old 01-09-2013, 10:41 AM #15
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The very first time I soaked my feet, I experienced a burning, painful sensations. I mentioned this to Mrs.D but she said she never experienced it.

I tried using it again and after a while the sensation of burning disappears. So I am using it now every night. As you know our bodies react to certain medications/supplements different ways.

My sister had this episode of swelling feet and legs. She was not taking any diuretic medications. But, she has varicose veins and she stands a lot being a teacher. This was resolved by wearing the compression stockings. Of course, this will not apply to you because you might not tolerate wearing tight stockings. Have you consulted a doctor about the swelling?
Yes I actually went today and they ordered my some of those. I'm willing to try them but I already told the dr. it probably won't work. I sit all day at work so she is concerned that blood is pooling but I told her I don't have swelling when I sit. Only when I stand or walk. We shall see. Also testing my thyroid AGAIN. I don't even remember what's it's like to have normal legs and feet anymore. You know if it's not one thing it's another.
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Old 01-09-2013, 07:07 PM #16
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That was exactly what happened to my sister, when she was lying down or sitting, the swelling subsided.
I agree with you on trying EVERYTHING to alleviate the pain. While trying to find the cause of my PN, and believe me, I had all kind of tests but nothing came out of it. I guess when you are just starting with a disease as painful as PN, all your energies and attention are focused on finding the cause/s, treatments/medications. But, at a certain point, when all everything humanly possible has been done and nothing is found out, you will learn to live around with it - not necessarily accept it but maybe live with it.

There are so many things h appening in my body now. I have a lung infection and recently, my PFT showed I have a little of both COPD and Restrictive Lung Disease. I have thyroid problems. For a while, I was hoping that the cause of my PN is my thyroid that once it stabilizes the pain will disappear but, sadly, no. Now that I am taking a cocktail of antibiotics, one side-effect is the absorption of Synthroid. So, aside from dealing with the side effects of the antibiotics, I have now to monitor my TSH, T3 and T4, which are right now going haywired :-(. For a long time after my total thyroidectomy, i was only taking Synthroid but when the T3 became abnormal, the doctor added Cytomel. I will take my test mid January and see the effect of this additional medicine. I discussed with the doctor about the slow-release cytomel, but he told me to give his prescription some time.


Yes, you are right, if its not one thing, its another
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Old 01-09-2013, 07:51 PM #17
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"I guess when you are just starting with a disease as painful as PN, all your energies and attention are focused on finding the cause/s, treatments/medications. But, at a certain point, when all everything humanly possible has been done and nothing is found out, you will learn to live around with it - not necessarily accept it but maybe live with it. "

well said.

What is going "haywire" with your thyroid, what do you mean by that, high numbers? Low numbers?? Just curious.

I am on desicated thyroid meds and they have worked great for me.
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Old 01-09-2013, 09:26 PM #18
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Originally Posted by Stacy2012 View Post
"I guess when you are just starting with a disease as painful as PN, all your energies and attention are focused on finding the cause/s, treatments/medications. But, at a certain point, when all everything humanly possible has been done and nothing is found out, you will learn to live around with it - not necessarily accept it but maybe live with it. "

well said.

What is going "haywire" with your thyroid, what do you mean by that, high numbers? Low numbers?? Just curious.

I am on desicated thyroid meds and they have worked great for me.
As of my last test (Nov 23, 2012), my TSH was 10.160 (High) and my T3 was 1.9 (Low) and T4 was 1.11 (Normal). That was the first time my T3 was abnormal after my total thyroid surgery in 2007. It was then Cytomel was added to Synthroid. I had several occasions when my TSH was high but it would normalize after adjusting the Synthroid. I read in one of the posts about the slow release Cytomel. In fact, Mrs.D suggested some valuable sites to read. I mentioned this to my endoc and he told me to give his prescription some time before considering the compounded formula. Well, my next test will be mid Jan. I hope my numbers will be okay.

Thanks for asking.
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Old 01-09-2013, 10:43 PM #19
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I hope your tests come out great and that you find the right medication.
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Old 01-11-2013, 10:01 PM #20
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This may be an off topic froom the main subject matter which is PN, but I am wondering those taking Synthroid and/or Cytomel, does it affect your blood sugar level? Just curious.....
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