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Old 01-14-2010, 03:37 AM #1
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Default burning in Uh-oh

Does anyone have hands that go numb after an intense burning episode? my hands spasm and cramp and i can't use them after these episodes-it seems to me that when this happens all the veins pop out like i weight-lifted... same goes for lower legs...to me, this sounds more vascular than neuropathy, but i have been told it's the PN... something called a non-length dependent small fiber neuropathy/gangliopathy.

Also, can you guys tell me the meds that you are on?
i am on neurontin and i take celexa...
tried...elavil, cymbalta, effoxor, lyrica, trileptal...bad side effects...

also, can neurontin make you lose your hair? i have bald patches along the sides of my hairline...

and what does everyone do about the weight gain?
i have tried dieting and exercise and can't get the 20 pounds off i have gained since being on neurontin...

it's hard to find any information or help about this stuff...
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Old 01-14-2010, 09:00 AM #2
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Just a thought, but this sounds like Raynaud's, without the severe color changes, and the hair loss sounds kind of autoimmune. Have you had an ANA lately?
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Old 01-14-2010, 09:43 AM #3
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Quote:
Originally Posted by daisy mae View Post

..........also, can neurontin make you lose your hair? i have bald patches along the sides of my hairline...
..........and what does everyone do about the weight gain?.
Look here to find out about neurontin & side effects.
Look in the left sidebar for different aspects & info on the drug.

http://www.rxlist.com/script/main/hp.asp
http://www.rxlist.com/neurontin-drug.htm


I've put on 30 lbs on neurontin, took 25 off with the Weight Watchers program (adhered to strictly) , put it back on with Lyrica and haven't been able to take it off, so I live with it, as a compromise- for pain relief.
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Old 01-18-2010, 09:40 AM #4
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Default Weight Gain

I never had a weight problem until I had a heart attack, and had to quit smoking. That was at 66, and now, at 71, I have been fighting a 50 pound weight gain since quitting smoking. And now, I too am on neurontin for PN. It does work, thank God. But then, add decadron, (steroid) for the Waldenstroms cancer that produced the PN in the first place, and by next Thanksgiving, I'll be one of the balloons in Macy's parade LOL. Well, maybe not quite, but it is a real battle not to just give up. For the past 4 months, I have been dealing with what the doctors call Neuropathic Eruptions on both heels. Looked like very large blisters when it first showed up. Podiatrist has been treating them with silverdene, and they're almost healed up. Problem is, I'm not supposed to walk on them. DUH. Just how do you exercise when you can't put your feet on the floor? I have been going to rehab for the curled up fingers that the PN has caused, and that is helping quite a lot. (I don't have to erase as much as I did a couple of months ago) But heck, today's a new day, and a very beautiful one too, I might add. And, I know that He still watches over me, and with that, how can one complain? Best of luck to all. I know only a bit of what some of you have to contend with, and I pray for all.
See ya~~~~
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Old 01-18-2010, 09:41 PM #5
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Quote:
Originally Posted by Gyrene View Post
I never had a weight problem until I had a heart attack, and had to quit smoking. That was at 66, and now, at 71, I have been fighting a 50 pound weight gain since quitting smoking. And now, I too am on neurontin for PN. It does work, thank God. But then, add decadron, (steroid) for the Waldenstroms cancer that produced the PN in the first place, and by next Thanksgiving, I'll be one of the balloons in Macy's parade LOL. Well, maybe not quite, but it is a real battle not to just give up. For the past 4 months, I have been dealing with what the doctors call Neuropathic Eruptions on both heels. Looked like very large blisters when it first showed up. Podiatrist has been treating them with silverdene, and they're almost healed up. Problem is, I'm not supposed to walk on them. DUH. Just how do you exercise when you can't put your feet on the floor? I have been going to rehab for the curled up fingers that the PN has caused, and that is helping quite a lot. (I don't have to erase as much as I did a couple of months ago) But heck, today's a new day, and a very beautiful one too, I might add. And, I know that He still watches over me, and with that, how can one complain? Best of luck to all. I know only a bit of what some of you have to contend with, and I pray for all.
See ya~~~~
I understand about the weight, I am a thin person but did gain about 40 lbs from prednisone prescribed for arthritis/collagen disease. Then I developed gastroparesis... that was what I called the GP diet. All 40 lbs came off and then some. Quite effective.

I am curious about what you describe as curled-up fingers from neuropathy. My left hand has been fisted lately and it is starting to cause some additional pain. Does PN cause this to happen?

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Old 01-18-2010, 10:29 PM #6
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Red face

I also have PN and problems with my hands and arms. I have wrist splints that help at night. My legs and feet do the same thing when i am up on them for any amount of time.

What is working for me best is Amatriptyline 75mg at night. It has stopped all my nerve pain i was experiancing in my arms and hands.

I take celexa for depression
a blood pressure pill
zanaflex for spasms
celebrex for arthritis
and i have vicodin when the pain is too much.

the Neurontin with the weight gain has really got me afraid of it.
I already struggle to keep at a decent weight.

i hope you find relief
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Old 01-19-2010, 09:42 AM #7
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'decent' weight vs pain relief.
Its a no -brainer for me. I'll buy
bigger waist jeans,
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Old 01-20-2010, 09:37 AM #8
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Smile curled fingers

To Mere,

The "curled fingers" I mentioned are just that. Right now, I cannot extend my ring finger nor my little finger on my right hand. Needless to say, typing is a hit and miss proposition. My right hand is much more effected than my left hand. You can plainly see the muscle mass shrinking between the fingers. My hand looks like it has been on its own diet for the last year. The nerves serving the effected fingers are being treated with laser therapy by a therapist. She gets frustrated because the Waldenstroms is continuing to promote the PN, and all her work goes to pot. It does keep the condition from worsening, and that is a bright light in the treatment.

The one condition that has been reversed is the high IgM in the blood. At its highest point, it was 7,900. (should be 250-300). It is down now to 6,400 with the use of Rituxan, and Decadron. If the hematologist can continue to drive down the IgM levels, the PN should follow suit. Hopefully. when the Waldenstroms is down to manageable levels, the PM will fade out.
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Old 01-22-2010, 04:03 PM #9
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hi there
I have had both vascular problems (reynauds and a blocked artery in my shoulder) and neuropathic problems with my hands.

As far as I am aware, vascular problems are accompanied by a drop in temperature and changes on colour in the affected extremity. I have never heard of vascular problems that cause neither. The first thing that both my rheumie and vascular surgeon check with my hands is colour and temperature when looking at my vascular problems. It makes sense, because if not enough blood is reaching an extremity then it starts going cold. When my hands are numb from reynauds, they are a waxy, bloodless white colour (usually just my fingers).

I also have numbness in my feet (permanent) from neuropathy. This is not associated with any change in temperature or colour, I just can't feel them. They can still be affected by reynauds though, as that is an entirely separate phemonina. I have both reynauds and PN as part of my lupus.
hth
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Old 01-23-2010, 07:32 AM #10
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Frown To Raglet

Yup.Know the "feeling" or lack thereof. It's interesting, I have never been diagnosed with reynauds, but the symptoms you describe, I have. The forefinger on my right hand will go cold, just as you describe. Sometimes, it is just like the other fingers on that hand, but at times, it can get quite a bit colder than the rest of the hand, and yes, whiter than the rest as well. The temperature variation can reach 15 to 20 degrees colder than the rest of the hand. It usually doesn't last very long. In cold weather, it gets worse, sometimes losing feeling, as well the temperature difference.

As far as the feet, we are as they say, "in the same boat". The entire bottom of my feet have gone numb to the point that I can't feel the petals in my car. Driving has to do with what happens when I "Think" I have pushed on a petal. I adjust by the results. If I apply the brakes, or at least, think I have done do, what the car does tells me how hard I have pressed. It gets sloppy at times, and in traffic, I drive with both feet. The left foot is always resting on the brake. I can tell if I'm pressing too hard by the upper light in the rear window coming on. I don't want to go around "dragging" on the brakes. That ain't cool.

The PN has caused me to develop neuropathic "ulsers" on my heels. Looks more to me like massive blisters. I have been confined to diabetic socks, and open back slippers for 4 months now, and they are about healed. But, walking out of my slippers is an unknown most of the time. I can be walking out in the yard, and find out I've left one of the slippers behind, and don't even know it.
As you all know, PN ain't fun, that's for sure.
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