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Old 05-02-2012, 08:49 PM #11
Idiopathic PN Idiopathic PN is offline
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I am so sorry to know about your hurting. One of the values of this forum is when someone talks about a specific symptom and another has it, we completely and deeply understand what we are talking about.

My skin sensitivity came up so suddenly. I just woke up with the severe itchiness all over my body, mostly in my legs and arms (with no rashes or anything). In fact, it was the first major symptom that I experienced. At that time (a little over 6 months ago), I thought it was a reaction to Plaquenil, which at that time I was taking. The rheumatologist told me to stop it and take Benadryl. After two weeks, the itchiness did not improve. My primary care physician gave me Vistaril (which is stronger than Benadryl). It did not help me either, instead, the itchiness turned into pain. It was like a sensation of "pins and needles". It was deep and stabbing pins and needles. Last winter was very difficult for me because of having to wear thick clothes (and it was my first winter with the PN symptoms so I was adjusting!!!).

My burning sensation has now been significantly reduced. I still feel it once in a while but I could live with it. What is very very challenging is coping with this hypersensitive skin and of course the painful feet. I dont experience that feeling of "weights" in my skin. According to my doctor, the pain will reach a plateau. He has been encouraging me to try Lyrica, but I think I prefer Gabapentin. They both have unpleasant side effects, but given our pain, we have to bite the bullet.


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Originally Posted by Susanne C. View Post
I am on 1800mg gabapentin and am currently taking about 3 325/5 oxycodone daily in two doses to try and get through this. That is double my usual usage of 1 or 2 per day. I am still in considerable pain and unable to carry out my usual responsibilities which include teaching part time. This has come up so suddenly I am hoping it goes away like it came.
For those of you who are experiencing this, and the burning in my hips and thighs is awful, did it happen slowly or all at once? Has anyone had the symptoms subside? The gabapentin was controlling the burning and zaps in my feet and legs quite well. Should I ask for Tramadol rather than a stronger oxycodone? My doctor has encouraged me to try the Butrans patch before. At this point I would take anything not to be able to feel my pajama pants laying like a 30 pound housecat on my lap.
I am also experiencing some burning sensation in my shoulders and upper arms, not nearly as severe. If i put on a sweater or jacket it feels like it weighs a ton.Does this sound familiar?
I would appreciate any advice.

I am fascinated by your mention of the suede sofa bothering you. We just got a new microfiber reclining loveseat which has a faux suede finish. My symptoms date from eerily close to its arrival. Is there any possibility that the upholstery is causing this? The symptoms are consistent with my CMT, but the sudden onset is not.
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Old 05-03-2012, 12:43 AM #12
Agirlandhertort1 Agirlandhertort1 is offline
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How strange to be reading this topic. We purchased a new bed/mattress/bedding recently, and I no longer sleep well in the bed. The sheets tend to bunch and wrinkle, and the wrinkled sheets hurt my skin terribly. If I don't take something before bed, I am likely to wake up frequently in pain from the lines made by the sheets. I cannot even put covers on my feet, as they feel like they weigh 100 lbs.

As a woman, I find bras horribly painful too. Everything from the straps to the fabric is uncomfortable, and sometimes my clothing feels like it weighs 100 lbs. too.

Since I am not working, I usually get by with silky/nylon dresses. They are lightweight and somewhat comfortable.
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Old 05-03-2012, 03:13 AM #13
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How strange to be reading this topic. We purchased a new bed/mattress/bedding recently, and I no longer sleep well in the bed. The sheets tend to bunch and wrinkle, and the wrinkled sheets hurt my skin terribly. If I don't take something before bed, I am likely to wake up frequently in pain from the lines made by the sheets. I cannot even put covers on my feet, as they feel like they weigh 100 lbs.

As a woman, I find bras horribly painful too. Everything from the straps to the fabric is uncomfortable, and sometimes my clothing feels like it weighs 100 lbs. too.

Since I am not working, I usually get by with silky/nylon dresses. They are lightweight and somewhat comfortable.
I use jersey sheets now... no top sheet, only bottom. There is no wrinkling with them, and they are soft.
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Old 05-03-2012, 03:19 AM #14
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Mrs. D, is Benadryl safe to take with my other meds? Gabapentin and oxycodone? I would love to give it a try, I'm pretty desperate! Thank you!
Benadryl is somewhat sedating. Also has anticholinergic effects.
For people with Sjogren's it might be too drying. Zyrtec is a less drying but still a strong antihistamine. Males with prostate issues have to be careful with these two antihistamines.

I only take the antihistamines at night.

Also Gabapentin and Lyrica have a warning about skin itching/allergy potential. They also can affect breathing causing shortness of breath.

You could try Allegra. But it has been my experience that Allegra is weak in action. But it is non-drying and for those people with sensitivity to the drying effects, it is worth a try.
I think Claritin is useless, and also it has potential for raising liver enzymes.
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Old 05-03-2012, 11:17 AM #15
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Oh no!!!! I wonder if my shortness of breath is a result of Gabapentin. (My appointment with the pulmo is still in July.)

I am trying to get away from Gabapentin but everytime I (very) slowly reduce my dosage, my symptoms would become intense.

I hope that one day, I could just take the supplements and not the gabapentin. That would be THE day!!!
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Also Gabapentin and Lyrica have a warning about skin itching/allergy potential. They also can affect breathing causing shortness of breath.

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Old 05-03-2012, 11:48 AM #16
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Oh no!!!! I wonder if my shortness of breath is a result of Gabapentin. (My appointment with the pulmo is still in July.)

I am trying to get away from Gabapentin but everytime I (very) slowly reduce my dosage, my symptoms would become intense.

I hope that one day, I could just take the supplements and not the gabapentin. That would be THE day!!!
Did you have the breathing issue before the gabapentin?

As I understand it, Lyrica is worse in the breathing department.
But gabapentin is also listed as having this side effect in some people.

But do discuss this with your doctor.
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Old 05-03-2012, 01:20 PM #17
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Hi
My daughter is having issues with the hypersensitive skin she says it feel like the worst sunburn she has ever had.She also says that bras hurt ,as well as other clothing.I went with her to the neuro yesterday and he is running test to see what is going on , but he thinks she has sfsn, little side note i was dx with this in feb and her dr said that because i have it, it is very possible she has it also.She will have blood work done next week as well as emg , and skin biopsy
Since she is a nurse it is very hard for her . Will see what she finds out .Btw she has found the genie bra is as comfortable as she can get.
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Old 05-03-2012, 03:22 PM #18
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Originally Posted by Idiopathic PN View Post
Oh no!!!! I wonder if my shortness of breath is a result of Gabapentin. (My appointment with the pulmo is still in July.)

I am trying to get away from Gabapentin but everytime I (very) slowly reduce my dosage, my symptoms would become intense.

I hope that one day, I could just take the supplements and not the gabapentin. That would be THE day!!!
Here are the stats to Drugcite.com for gabapentin:

http://www.drugcite.com/?q=gabapentin

If you click on a reported category it will open up with details.
You can print this out and take to your doctor when you discuss this possibility.
Not all negative reports are made to the FDA-- only a tiny fraction in fact. So interpreting the numbers is only a general thing. A symptom may be more common therefore than it appears on this list.
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Old 05-03-2012, 06:38 PM #19
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Originally Posted by mrsD View Post
The only times my skin "hurts" is when I am having a serious infection. Often with the flu or a fever.

Have you tried an antihistamine? A strong one like Benadryl or Zyrtec? That seems to help me when I am ill. Its been a while for me... when I increased my Vit D...I stopped getting colds/flu.
I still get allergies however.
I did try the benadryl, once before bed last night and again this afternoon after school. It definitely made me sleep very soundly. It may have improved the pain, but the effect was not long-lasting. I had an hour or two of lessened symptoms, but the burning and sensitivity is back already, and about the same.

My students said something very funny this morning and I reflexively slapped my thigh. I almost screamed, the pain was excruciating!

BGT 1121, please keep us informed about your daughter. It sounds as if she has a hereditary neuropathy as well, and I am very curious how they will view her skin sensitivity. I was not expecting this symptom, certainly not this suddenly and severely.
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Old 05-04-2012, 07:39 AM #20
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Quote:
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Did you have the breathing issue before the gabapentin?

As I understand it, Lyrica is worse in the breathing department.
But gabapentin is also listed as having this side effect in some people.

But do discuss this with your doctor.
Yes Mrs.D, I have the breathing issue before Gabapentin, but it seems that its getting worse now. I am using the peak flow meter and my results are lower than it used to.
I was searching on the symptoms of COPD/Emphysema last night, and it seems that the only symptoms consistent to COPD is the shortness of br eath. I dont have a cough...and I can exercise without gasping for air. My wheezing is very very rarely.
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