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.

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.

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.

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.

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.

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.

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.

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.