[Killian]

I have never heard the term "flare" used in conjunction with PN until I came here.

Do most people have PN flares?

I don't think I ever have - my symptoms are there in my lower legs and feet/toes all the time. Yes sometimes they aren't as bad but they are always there. I'm on a very low dose of neurontin, I don't want to increase it. I was going to stop it but decided to keep taking the low dose.

I do not have diabetes - my PN is idiopathic.

Thanks.

[mrsD]

Since I had my thyroid more of less balanced, my severe everyday problems resolved about 90-95%.

But as I got older, thru the menopause, I started to get insulin resistant and with that came burning. Some burning I traced to foods. Certain tomato sauces, potatoes of all kinds, and MSG.
I did gluten free for about 3 yrs with no success.

In hot weather I am more prone to burning at night. I rarely get foot issues during the day. But today I do have some and it is hot and humid today, and tomorrow more cooler is expected.

I get flares therefore of this type of pain. The burning type.
I wear open shoes all summer.

I have various tricks to control it... and for the most part it remains quiet...but it can act up. It is odd, because today I have the best morning sugars I've had in ages, and I have hot feet! Go figure!

[januarybabe]

My PN is there all the time. It doesn't flare. I have times during day when pain is better or worse. Usually it is less at night when I am sleeping. In fact, it seems to go away completely. I get a brief respite in the morning after waking usually about an hour. I am on 1600 mg of gabapentin dailyy

Pain gets worse as the day wears on. About 4 p.m. onward I really feel it.

[nsw43]

New here - my first post though I've been lurking for a long time and have found great information and solace here. Thank you.

I have flares that seem to be very different from what other people write about and I wanted to find out if anyone has had the kind of experience I've had.

I have neuropathic pain on the right side of my torso and my neck/face plus mild numbness and tingling in both feet. This has come on very insidiously over three years, starting with a strange little pain in my right armpit.

My GP originally thought I'd pulled a muscle. I kept going back to her because it was getting more and more painful, so she did a bunch of blood work and found my B12 was very low - 171. This was almost a year after I initially presented with the little armpit pain.

I took B12 shots and got the level up to 1200, but at the very same time I was boosting the B12 my clinical symptoms got much worse - including a lot more burning pain along a line under and above my right breast, then spreading around the back along those same lines. Since then, it has moved up the right side of my neck into my jaw and mouth, up and down my right back so it's about all affected, and recently down into the waistline and abdomen. My feet have also gotten worse (slight numbness, tingling) but so far no pain. I continue to take B12 and my levels remain at the top of the range.

I call my flares "firestorms" because they are a blistering attack of pain and neurological dysfunction. I have an extreme exacerbation of pain in all the regular places but also in some new place. For example, the pain has just recently settled into my upper back. I had a firestorm where all the old places hurt like heck and this new place also really hurt for the first time. After that, the pain was established in the new place as well as the old. They all hurt all the time, but not at the heightened level of the firestorm.

My firestorms appear to be the means by which the neuropathic pain spreads into new places. During a firestorm I usually get a steep drop in blood pressure. My thinking is affected and sometimes I'm really out of it. My eyesight gets blurry. When the firestorm dies down, I'm exhausted and usually sleep for hours.

I can go for weeks, sometimes even a couple of months, without a firestorm, and then I can have them in clusters. They are more frequent in the summer.

My neurologist says she's never seen anything quite like it -- in fact she's mystified by my overall symptomology, and she specializes in neuropathy! I was lucky because I happened to have a firestorm one time when I was seeing her so she knows these episodes are real. She just doesn't know what is causing them.

I have spinal stenosis in a few places, but this is clearly a process not something mechanical. EMG and EEG were pretty normal. I have a little tremor so she thinks I might have early Parkinson's but it has not gotten worse over the 3 years. The Cymbalta I take clearly causes some shaking because tremor is worse right after I take the drug.

Anyway, sorry to have gone on so long, but when I saw this "flare" topic I finally had to post and ask for your help. I'm beginning to get early signs of neuropathy on my left side, so I guess this process is going to go on until it gets my whole body. (sigh) And as I'm finishing up this post a firestorm is starting up. (double sigh)

Thank you all for reading this. Greatly appreciated.

Natalie
Female
67yrs old

[mrsD]

Those "firestorms" may be activation of Herpes virus in the ganglia of the spinal cord.

If you search "Zoster" or ganglion in our search at the right top of the first page of PN index of posts, you'll find many posts.

You can have blood work for both simplex and zoster to show if there are high viral titres present. If so, some antiviral drug treatment may help.

Ganglioneuritis is the medical term used for this.

Herpes tends to activate in spring, and be more active in summer.

You can also try to put the herpes down with L-lysine orally. 2 to 3 grams a day may help with spells of activation.

[daniella]

I have 24/7 for 4 years pain but I do have flares where it becomes much worse. Sometimes I see a connection of why and sometimes there is no reason. I have RSD and PN though so not sure which causes it.

[edriscoll]

My husband suffers from idiopathic pn (2 yrs) in his feet. He feels now & since it happened (he works in a hospital OR & was pulling a heavy laser out of a truck and felt a pull in his back) that it has something to do with his back. He has had tests done seen specialists been to PT & no one agrees. But every time he does a specific move or pulls a heavy object his feet flare up? All he takes for pain is Lyrica. He is also now on Zoloft because of depression. He is a strong man and continues to work every day but is frustrated because no one in the medical field believes him. Anyone else ever have flare ups due to heavy lifting? or pulling?

[Killian]

Thank you all for your replies. I guess I just figured everyone was like me and had these symptoms all the time so hearing about "flares" confused me. I now know that is not the case.

Even though I have symptoms all the time, those in my feet get worse if my feet are really cold.

Sometimes things ease up during the day. I really hesitate to use the word better because I have before and then people think my neuropathy is gone - ha, don't I wish

Think after years of trying my thyroid values are finally normal, for now anyway. But I don't think Graves had anything to do with PN>

Natalie when I read your post what came to my mind was shingles too, like mrsD.

Thanks again for your replies!

[Sheltiemom18]

Oh - never thought of this until I read this topic.

In 2003, had shingles. Only a very few lesions, with the most being in the area just below the right collarbone, a few others just outside the right armpit and another few over the right upper scapular area.

Was Rx'd cortisone and Valtrex my a Cleveland dermatologist, which I took - the worst part of this story being that I had to leave within days to drive myself and my Sheltie 1100 miles to Florida where we were moving. The burning was during this March trip was unbelievable, and my skin had gone fairly red. Ran into a Emergency Medical Service guy at the front desk of the second hotel I stopped at and asked him what could be causing this red/burning? He said possibly the combination of cortisone and Valtrex, but he suspected Valtrex.

After stopping the medication, the redness gradually disappeared but I was left with what the Florida doc called post-herpetic neuropathy for which I took neurontin. After some months on it, I woke up one day not being able to focus my eyes and the inside of my head felt so strange I can't even describe it. I stopped the neurontin cold-turkey, even though I knew I shouldn't. I soon realized the neuropathy was gone, and I had no ill-effects from the cold-turkey stoppage.

Even though my January 2010 onset of NLD SFN has decreased to bearable levels over the past six months or so, I now get mild "flares" that I attribute to the the stronger sun and warmer temperatures for the most part. Probably a bit to certain foods and stress.

My question is whether or not these "flares" might also be caused by the fact that I'd had shingles/resultant neuropathy. I tested negative for shingles recurrence when first Dx'd with neuropathy last year.

Thank you,

Sheltiemom

[mrsD]

I think the shingles virus is very sneaky.

You could try taking some l-lysine and see if that helps. If it does, then the virus may be a strong trigger for you.