Treating multiple symptoms is like juggling 4 or 5 eggs...
 

This is my first post but I've been reading posts for a while. I have Peripheral Neuropathy as you probably know since I'm here.

I'm 52, & see my GP & Neurologist. I've had multiple testing done- extensive labs, EMG & a Circulation Study (I have redness on my feet too so the neuro thinks I have circulation issues but my GP thinks its a rash. I don't think it's either one, I think it's a Neuropathy symptom.

Diabetes, pre-diabetes & B-12 deficiency were ruled out. I'm within normal weight range, fairly good diet, & walk about 3 times a week so this was really out of the blue. The Neuro has classified my PN as idiopathic without known cause.

The symptoms of PN are so hard to juggle & treat because there are so many of them! e.g. pins & needles, burning legs/feet, the crawling itch that feels like tiny ants or other little crawing things have built a home under your skin! Then there is the soreness in your muscles, & feet that feel like you are walking on the bones without any padding. That's one symptom that I haven't found a solution to. I wear good shoes, New Balance brand walking shoe, which I've read is Neurologist recommended for feet & leg problems.

The Neuro put me on Gabapentin. As symptoms broke through between doses, she upped it to where I am now, 600 mg 3x a day. She has mentioned raising it higher but ai'm trying not to do that yet. This is a lifelong disease from what I've read, why rush immunity to my med right? I am prolonging that as much as I can. Recently she put me on a compounded cream because the itch will break through plus my muscles get very sore in my calves or thigh. The cream is Ketamine/Gabapentin/Amitriptyline.

At my last visit she approached the idea of water therapy for my muscle soreness & a med that she can give me but I told her if the cream doesn't help, I'll try those. I want to give the cream a chance. I've seen some mild improvement in the soreness, not a magic lotion but it is helping somewhat,

Has anyone had water therapy help their muscles? I dont really even know what it is although ai enjoy swimming when ai get a chance to. I didn't ask her what this muscle pill is. I hate taking pills but if my muscles don't get much better, I guess I will have to take another med. I don't take many, just gabapentin & a BP pill but I really hate to take pills. I prefer to try non medicinal approaches first.

Sorry this is long, I gave most of my history with PN though. Thank you for letting me vent a little about my own experience with PN. It feels good to know that I'm not alone going through these crazy pains, even though I wouldn't wish this on anyone.

Welcome to NeuroTalk:

I have to ask, and I do so of every new member... do you know what your B12 test was in numbers? Don't accept "normal" because the ranges go way below 400pg/ml still in the US.
You should be at least at 400 and hopefully more like 600 IMO.
So see if you can get those results. Many doctors accept 200 as normal and that can lead to significant problems.

Secondly, I suggest you start soaking in Epsom salts. This will provide some magnesium directly to your feet and muscles of the legs. If you find this works somewhat you can get the Morton Epsom lotion and use that and/or use some SlowMag orally twice a day to further improve. Many people in the US (up to 70%) do not eat the RDA of magnesium. Magnesium blocks pain receptors, and also helps relax muscles. It has about 300 important jobs around the body as well.

This is just the beginning. There are other things you can try also, but these two are the most common to fix.

See if you can remember when this started and give us a history... drugs used, or still using, vaccines, illnesses, trauma,
what you are exposed to daily... Much of PN can be enviromental, and you have to be a detective to ferret it out.

Some autoimmune disease shows up in testing (ANA) but sometimes that can be normal (cycling from abnormal to normal) or due to drug induced lupus which does not affect ANA results.

You sound like you're going thru a similar experience with the Gabapentin that I did. The Neurologist started me low, & I kept asking for a higher dose until I was at 600mg 3x a day. Then that wasn't enough, and I went to 600mg 4x a day. Then that wasn't enough, and this all took place within a period of about 8 months. I had no desire to have greater brain fog, knowing the relief was going to wear off again shortly.

I asked for Nortriptyline, and I'm now taking 50mg once a day. Unlike Gabapentin, one isn't likely to need to raise their dose, as tolerance is less likely. It also works very good to start (for me anyway), similar to the Gabapentin, but as you settle into it, some of the (fuzzy feeling) relief fades. I still have a "folded sock" feeling, similar to your problem, which was altered slightly by the Nortrip. I'm now trying a metatarsal pad in each shoe to support the center of my foot, which has helped somewhat with the pain. Pain seems to be more tolerable now & my feet feel less clumsy now.

If you're looking for close to complete relief for all your pains, it's not likely to happen, but if you're lucky, you can bring them under more tolerable levels & just thank God if it doesn't get unmanageable.

Oh, yeah. I tried some Naproxen with the Nortriptyline, and I got some really strange feelings that I don't care to experience again. Ibuprofen is OK, for me, but doesn't work for as many hours & the extra relief was only slight, with either of them.

Hope this helps.

I'll see if I can get them to give me the exact B-12 number. It will probably be Monday, as I woke up with a sore throat & cold today. I managed to avoid getting sick all winter & now it's spring, & 60 degrees, I get sick, yuk.

Wouldn't my Neurologist indicate if my B-12 might be on the lower side of normal? I was referred to her through my GP office.

It's hard to figure out when this started exactly because I brushed off the early symptoms for maybe a year. Hurting feet? I'm getting older. I bought gel pads for my shoes, it helped a little but not much. Itching & redness, it was probably an allergic reaction to something...know what I mean? It would go away, but always come back. Maybe I had sensitive skin. It was only the pins & needles & electric shocks that really made me wake up & tell my Dr something was ally wrong. She sent me to a Neurologist out of town for the tests. We are kind of rural but my Neurologist is only 45 min away. There is a closer one but she said it would take months to get to see him, & she preferred I get in soon.

Neuropathy scared me since my mother had it. Hers was diabetic caused. She never had symptoms like this so I was quite the doubting Thomas when I was told ai have it. Her feet would get numb & she would fall (she passed in 2011 of a major stroke). That's the only symptom of Neuropathy she had, numbness that would happen out of the blue & the cause was diabetes so I don't have any reason to think it is hereditary.

As far as trauma goes, the only injury I've had in many years is breaking my middle finger in 2010 & damaging the tendons. I had to have hand therapy for about 6 months, acquired a cyst on the bone from arthritis setting in the injured finger but that doesn't seem likely to getting PN. I do get pins & needle pokes in my hands & arms sometimes, even in side but it would be very odd if breaking a finger caused this.

I've not had any major illness.

In my labs, they did say I was very low on Vit D. She put me on a large dose of D for 2 months & I take a maintenance dose of 5000 daily.

Potassium was low but adding more to my diet corrected it. My BP med (fluid pill) was the culprit there & it's much better now.

The old outdated lab ranges go down to 200.... anything listed between 200 and 400 will NOT be red flagged...and most doctors miss this. Not very many seem to know the new ranges, and so
they rely on the labs to flag them for them.

It is possible your doctor knows, but are you willing to take that chance, when so many come here with low levels that were ID'd as "normal" ?

This needs to be clarified before you consider doing anything else here in the supplement arena to help heal yourself, or reduce discomforts.