AKmom
Senior member
- Joined
- Jun 2, 2010
- Messages
- 608
- Reason
- DX UMND/PLS
- Diagnosis
- 11/2009
- Country
- US
- State
- Alaska
- City
- Wasilla
one symptom I have had for a couple years is the 'itchy' sensation. It use to be only in my feet then it moved to inlcude my legs. Not from dry skin. Its the kind of itch that you scratch and it doesn't go away. Now the itch is pretty much anywhere on the body. The only rash is from the redness of me scratching so hard and long that it leaves a mark. At times I will bleed from scratching too hard and scratching the skin off.
Now a days no place is sacred from the itchyness. It can pop up anywhere at any time. Sometimes if its in my hands...they will swell up to the point of my rings will be way too tight. I have learned if it starts in my hands then I need to take my rings off immediately.
I have tried everything to get rid of the itch. Lotion is soothing the burning of my scratches...but it doesn't stop the itch. Antihystamine will sometimes help but I can only take that at night and its only good for a few hours.
I was on neurontin for years on two seperate occasions...and I am thinking at those times the itch was not bothering me. They had me on neurontin to help with my periphial neuropathy, but the problem with neurontin is your body requires more and more of it in order for it to keep the same effects as it first gave you. So when I hit the max dose and it was not working...I had to wean off the stuff. That is a nasty thing to do..because when you have taken it that long it messes with your pain receptors or something. I would feel like I was on fire as I weaned off slowly, it was painful to be touched by others and even my clothes were irritating. My skin would crawl and feel like little spiders were crawling on me. I hated it. So I will not go back on that drug. I sometimes wonder if its the neurontin that has caused this problem...seems when I went off it I started having the problem.
I have noticed at night the itching is worse. Usually effecting either my feet, hands or unmentionable areas. I find that if I put the offending appendage under very cold running water it seems to feel somewhat better, just as long as its stays under the water. Sometimes I will wrap wet cold wash cloths around whatever is itching. Other times I use an icepack. This helps till the antihystamine kicks in. I don't know if the antihystamine is taking the itch away...I think that it just makes me sleepy enough to fall asleep and not itch. Come to think of it, I can take a zanaflex and the itch will go away if I fall asleep. But I have woken in the middle of the night and started itching...very frustrating.
I am pretty sure this is a neurological symptom of some sort given that its never relieved by scratching and that there is no rash or dry skin as the issue. My question is...do people with PLS suffer from this type of itch? What if any is your experience?
Now a days no place is sacred from the itchyness. It can pop up anywhere at any time. Sometimes if its in my hands...they will swell up to the point of my rings will be way too tight. I have learned if it starts in my hands then I need to take my rings off immediately.
I have tried everything to get rid of the itch. Lotion is soothing the burning of my scratches...but it doesn't stop the itch. Antihystamine will sometimes help but I can only take that at night and its only good for a few hours.
I was on neurontin for years on two seperate occasions...and I am thinking at those times the itch was not bothering me. They had me on neurontin to help with my periphial neuropathy, but the problem with neurontin is your body requires more and more of it in order for it to keep the same effects as it first gave you. So when I hit the max dose and it was not working...I had to wean off the stuff. That is a nasty thing to do..because when you have taken it that long it messes with your pain receptors or something. I would feel like I was on fire as I weaned off slowly, it was painful to be touched by others and even my clothes were irritating. My skin would crawl and feel like little spiders were crawling on me. I hated it. So I will not go back on that drug. I sometimes wonder if its the neurontin that has caused this problem...seems when I went off it I started having the problem.
I have noticed at night the itching is worse. Usually effecting either my feet, hands or unmentionable areas. I find that if I put the offending appendage under very cold running water it seems to feel somewhat better, just as long as its stays under the water. Sometimes I will wrap wet cold wash cloths around whatever is itching. Other times I use an icepack. This helps till the antihystamine kicks in. I don't know if the antihystamine is taking the itch away...I think that it just makes me sleepy enough to fall asleep and not itch. Come to think of it, I can take a zanaflex and the itch will go away if I fall asleep. But I have woken in the middle of the night and started itching...very frustrating.
I am pretty sure this is a neurological symptom of some sort given that its never relieved by scratching and that there is no rash or dry skin as the issue. My question is...do people with PLS suffer from this type of itch? What if any is your experience?