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04-04-2018, 12:03 PM | #1 | ||
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New Member
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Quote:
One of the symptoms of bartonella is burning soles of feet. and anxiety is many people with lyme first symptom. I have lyme for 15+ years and battling peripheral neuropathy now which is why I am visiting here. |
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06-16-2023, 01:15 AM | #2 | ||
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Newly Joined
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Hey did you break by now it's been awhile? Are you back to normal?
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09-05-2014, 02:57 AM | #3 | ||
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Junior Member
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Hi IH8PN, i was wondering how you are and can you tell me what are your most important findings. I am interested because a friend of mine experiences some of the same symptoms.
Good luck! |
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11-10-2014, 02:30 AM | #4 | ||
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Junior Member
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2 months since last update. I'm still moving along dealing with the PN. There are a few things I've been meaning to mention, and I hope to catch this thread up by the end of the week.
For now I just wanted to note that half way in to my shift at work and it's probably the least amount of pain I've had in my feet in the past 11 months. Most days are moderate pain, and some days it's severe. Today I'd call it "discomfort." I know it's just "a good day" but sometimes you need milestones to judge progress. When it's so easy to get depressed dealing with chronic pain, you'll take any reason you can to remain cautiously optimistic. Hope everyone is hanging in there. |
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"Thanks for this!" says: | beatle (11-10-2014), echoes long ago (11-11-2014), Joe Duffer (11-10-2014), mrsD (11-10-2014), St George 2013 (11-10-2014) |
02-12-2015, 01:22 PM | #5 | ||
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Junior Member
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I hate to say it, but no my PN is not gone. I've stayed away from posting for 2 reasons. First is I'm not sure much has changed for me in the past few months. Second is I feel I'm better off mentally if I find ways to distract myself from my symptoms rather than dwell in them. Posting may bring some baggage with it as I bring to light all the things I hate about this disease. I'd much rather distract myself.
I can echo the sentiments of many when I say that some days I feel like I'm getting better, some days it feels worse, and other times I think I'm just getting used to it. The PN in my feet is 95% related to pressure, meaning that the pain in the soles of my feet steadily worsens when standing and tapers off fairly quickly when I sit. The other 5% is random twitching, prickling, and feelings of coldness that seem to come and go on their own. I have been pretty good about taking better care of myself the past 3 months. Diet has gotten better with more fruits and vegetables, exercise 3-4 times a week on the bicycle, alcohol and junk food way down, and still a steady dose of supplements. I haven't noticed a significant change in pain levels with or without the above, but I feel better mentally knowing that I'm taking care of myself. Tried capsaicin the other day because at this point I'm willing to try anything. That was a bad idea. awful burning that started a few hours after application and didn't die off until 24 hrs later. I know there were warnings from others on here about capsaicin but I had to try it for myself. I'll never do that again for what its worth. My neurologists sucks. I told him the gabapentin wasn't working and that I'd like to taper off and try something else. He wanted me to see how I felt without the gabapentin first. I'm sick of having to suggest ideas and beg for help. Shouldn't my MD be the one to offer suggestions and help? I'd like to get off medications anyway so I'm not going to stress about not being offered an alternative to try. My next course of action may be to try and get a hold of a compound cream if I were to try a new medication. |
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"Thanks for this!" says: | Joe Duffer (02-13-2015), MissyJ (10-25-2015) |
05-25-2016, 11:14 PM | #6 | ||
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Junior Member
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It's been quite awhile since I've posted any updates. I apologize as I was hoping to post regularly as both a journal and a case study.
In general things have changed very slow or often, but I have something I'd like to share. I often hear that neuropathy improves or changes very slowly. I'd have to say that in general my "good days" have been better and more often. I still can't pin point and cause or effect. It's maddening to have "good days" followed by "bad days" when you have no idea what the reason is. Yesterday I had quite a bit of pain. Standing and walking were very uncomfortable. It's usual so while it took a toll on me physically and mentally, it's not something I'm not accustomed to. Well today was a great day and I don't know why. If I did I'd do whatever it took to feel this way I'd do it everyday. I don't expect to feel this way tomorrow as I rarely string together multiple days being pain free. As a result I did everything I could that required being on my feet. I played with my kids and did as many chores around the house as I could fit in. It's definitely a mind trip to go back and forth between hope and despair as the pain waxes and wanes without notice. I try to stay strong as thoughts of despair consume my mind. I don't know if i'll ever get back to normal. It's been almost 3 years and while the neuropathy has improved noticeably, it's hard to believe i'll ever feel normal again. I still check on the board once a week or so to see how people are doing. Stay strong. It's hard. I know. I struggle everyday and I know how hard it is to push on. Let's fight this disease together. One day we'll have a way to combat this, or at least manage this. Thank you all for your involvement on this board, it is more valuable than you know to fellow members. Sorry if this post seems to rambles on. I jhave so much going through my head that it's hard to put into words. Goodnight all!! |
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"Thanks for this!" says: | Healthgirl (05-26-2016), indigo (05-26-2016), KnowNothingJon (05-26-2016), midori (05-26-2016), MikeK (05-26-2016), mrsD (05-26-2016), northerngal (05-26-2016), onlyhuman (10-12-2016), pinkynose (05-27-2016), St George 2013 (05-26-2016) |
05-26-2016, 10:00 AM | #7 | ||
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Junior Member
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Your story sounds so familiar, the really good days followed by the bad days.
For me since my back surgery the pain has been reduced greatly. The pain from my back to my feet is almost gone, the burning and tingling is still there some days are better than others. For me the biggest plus is prior to the surgery I came to dread the really good days since I knew what was going to follow wouldn't be pleasant. Now I don't have that fear. Keep exercising & moving, one foot in front of the other is my mantra. Best of luck & I hope you continue to improve
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My PN is considered Critical Illness Neuropathy. In October 2010 I left for a golf trip not feeling well, woke up in a hospital 21 days later. I was in an induced coma for treatment of Legioneers Disease. First day out of ICU I noticed the pain in my feet and as they say the rest is history. |
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