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Discussion Starter · #1 ·
Can anyone who has neuropathy tell me what it starts like? I'm having pain in one of my big toes that feels like someone is jabbing a dull knife in the tip of it. I had it a lot last night, right now its gone but I'm sure it will be back. I had it off and on for a long time but usually only occaisionally. Now its becomming more frequent and I'm trying to figure out what it is.
 

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For me it's ranged from numbness & tingling (over a larger area of an arm or leg than just a toe) to an extremely painful almost burning sensation. Have you mentioned this toe pain to your doctor in the past and what does he/she think about it? Does it change color or swell at all?
 

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" I'm having pain in one of my big toes that feels like someone is jabbing a dull knife in the tip of it. "
Sorry for your pain. My neuropathy feels like "pins and needles" or "tingling" - but different, though I cannot say how.
I second the thought of speaking to your MD and I pray you are not developing gout. A couple of my friends had gout and it is *not* to be laughed at. But it is also treatable.
All the best,
Douglas+
 

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Hi,

My neuropathy resembles what Maia said and is also sometimes like having cold wet socks on my feet and hands.

Katharine
 

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Discussion Starter · #5 ·
Sigh, my mother had gout so I guess its a possibility. Another diet change. (Haven't noticed any numbness or tingling.)

I have a GP appt tomorrow and a Rheumy appt next week so I will be mentioning it to the doctor. Thanks all.
 

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If it's gout, there is usually no doubt about it and your toe will swell and turn bright red. My dad with his first gout attack was doing an army/belly crawl (with his foot never touching anything!) across the house to get to the car so mom could take him to the ER. The pain is *that* bad.

I'm wondering if you have a lupus attack going on in your big toe right now... given the description of the pain. A bit strange it's only in one toe and not symmetric but the pain of lupus isn't always symmetric either.

Good luck at the doctors appointments, I'll be interested to hear what they suggest.
 

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Hi Jirel,

I get pain like you describe around one of the joints of my left thumb and my left thumb only :hehe: It often happens at the start of a flare. It's kind of like one of my warning signs like the mouth ulcers/fatigue etc. I rarely get pain symmetrically at the same time during a flare. But I do get symmetric pain if that means on both sides of my body, just not often at the same time.

Like the others my first symptoms of neuropathy were pins/needles at the outset, sometimes numbness.

I agree with the description of gout that Maia has mentioned. My brother in law gets it and the redness and profound swelling are something that is very obvious.

Hope you aren't heading for a flare :(

love
Lily
 

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I don't even know what came first anymore. I remember my first bout with pins and needles. That was about 5 years ago. Just stepping into lukewarm bath water would feel like a thousand tiny pins and needles jabbing into my feet and legs. It would take me at least 15 minutes to settle into a bath. Similar for anything cold, I couldn't grab food from the freezer.

I know that the pins and needles were WAY worse when I was at my thinnest weight... when I'm overweight, I never experience them in the same way. I don't know if that is related or not...but something I noticed.

Also, I have bouts of random numbness. Good times.
 

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Discussion Starter · #9 ·
Well, no swelling or redness so its not gout. It had better NOT be the start of a flare. I just came off a 5 month flare and I don't want to start another one. I still am getting head sores from the flare I had from Oct - Feb.
 

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Hello. When I was first diagnosed with neuropathy of my feet and legs I was dealing with with the loss of feeling in my feet and the calves of my legs. Then it went to being very painful pins and needles in them it took about a month for the appropriate diagnosis because they were incinuating that it was all in my head until they did some type of test where they actually stuck me with little pins and did some type of scan while doing this oh wait a minute I think it was a nerve conduction test not positive with the name of it but that is when they realized that it was not in my head. Today I still feel the numbness in my feet all the time and the occasional pins and needles feeling in my legs. The only down fall of this was that I had to give up my drivers license because I could not feel the brake or the gas well I could not feel how much pressure that I was putting on them and I know that if I was to cause an accident I would never be able to forgive myself so I turned in my license but I have noticed along with the symptoms of lupus the neuropathy also gets better and worse depending on the weather I don't know if anyone elses does but thats me. I hope you get the appropriate diagnoses and you do not suffer to much because of this. Laurie:wink2:
 

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Hi Jirel,
I have the stabbing pain too.I get the pins and needles sometimes but the stabbing pain in my fingers and toes and now in the instep of my feet just about puts me over the edge. I was dx'ed with neuropathy 8 months ago by nerve conduction tests and at that time I had only the stabbing pains. You should see a neuro if you don't already...they could help you more.

Best of luck and hope you fell better soon.
Mary
 

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This is off the subject but I wanted to comment on the driving issue. I too had given up driving because I couldn't feel the pedals. My neuro came to the rescue. She gave me the same tips she gives her MS and Parkinson's patients so they can keep their independence. The most important are:

Let your foot follow your knee to the appropriate pedal. If you aim your knee correctly you will be in the correct spot.

Keep applying pressure until the car slows or increases in speed. I definitely keep more of an eye on the speedometer these days which isn't a bad thing.

If that doesn't work for you you can have your car converted to hand controls. I understand many MS patients do this so they can continue driving.

I also stay in town and take the less traveled routes. The radio is off and I don't talk so I have complete concentration. In the long run I think I am driving safer now than I was before when things were automatic.

Take care,
Lazylegs
 

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Like lazylegs I check my speedo more often now. My main numbness/lack of correct sensation problems are in the right leg and if it's really bad I don't drive...... it does fluctuate.

Other times I do similar to what her doc suggested. That way I can keep on an even speed. I need my license as I live on my own now and in a rural area. I don't drive in the city anymore because of this problem but it's ok driving around where I live and getting in and out of town.

love
Lily
 
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