Peggy
New Member
Posts: 33
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Post by Peggy on Nov 17, 2009 16:48:00 GMT -5
Well in the last month or two I have had a new development. I've had peripheral neuropathy since the start of my systemic sclero. It started as tingling and then they went numb. Now the bottom of my feet hurt and after being on my feet the left heel just plain hurts. I have no idea if this is a sclero issue or not. Is it? I mentioned it at my last sclero apt and my rheum doctor said I should see a podiatrist. I didn't think it was necessary but may be changing my mind on that. I have made sure now that I don't just go with stocking feet in the house and try to wear cushy slippers. Are the bottoms of my feet wearing away? Is this from sclero? Do others have this?
Thanks and warm hugs,
Peggy
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Post by jeffn on Nov 17, 2009 17:07:57 GMT -5
I did and I think the foot pain on the bottoms of our feet is not uncommon. From my reading on various boards (take that for what it's worth) the fatty tissue in on the soles of our feet deteriorate and so less padding. I also think that some of it is nerve pain from swelling like our hands, mine has gone away now. Anyway I think that the tissue on the foot bottoms is like the little divots many of us have on the ends of our fingers, not digital ulcers but the just small crater like depressions. My doc told me that was the fatty tissue disappearing. My feet were very sore for a while but as I said that has gone now and I am able to walk barefoot outside again. When the SD was cranking and I walked into the bath every morning on the tile floor it was very painful. Walking outside barefoot was out of the question.
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aajmom
Junior Member
Posts: 76
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Post by aajmom on Nov 17, 2009 17:24:47 GMT -5
Peggy, like Jeff- I had real problems with the bottom of my feet that, thankfully, are no longer with me. At my worst I wasn't able to go barefoot at all. Anything coming into contact with the bottom of my feet REALLY HURT! If I went to clean the kitty litter and there was even the slightest bit on the floor it would cause tremendous pain on the bottoms of my feet.
My doctor decided at that time that I needed a short period of steroids (although let's face it- with steroids there is no such thing as a short period!) and fortunately that was the last of my pain. I, too, have read that the padding on the bottom of our feet wears away from the disease.
Hope you get some relief!- Adriane
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Post by joannern on Nov 17, 2009 18:38:53 GMT -5
I have no fat pads on the bottom of my feet either. Ther is no such thing as walking barefoot, not even 6 inches. I have a foam pad I use in the shower cause it hurt to stand in there too.I have no answers but can sure say I understand.
Joanne
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Post by Cubby on Nov 17, 2009 20:14:45 GMT -5
My feet were a mess! I could not stand anthing touching my feet, not even on top. All I could wear were my RAINBOW sandals which have big, thick arches. I was like that for about 3 years. I just started wearing shoes this past year and now I can walk barefoot again.
I had the peripheral neuropathy also. I took very very high doses of Neurontin (3500 mg a day) which finally took the burning away. Also took 3500 mg of ultracet with it. I WAS A MESS! Now, I take no pain meds.
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lucci
New Member
Posts: 49
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Post by lucci on Nov 20, 2009 13:16:05 GMT -5
Peggy,
That was one of my first symptoms along with my swollen aching hands and in my opinion it is definitely Sd related. I did not lose any padding on the bottoms of my feet, they just felt that way. I could not walk barefoot on my hardwood floors for a while. We know just what you are talking about.
When my meds started to kick in and I started to get better it got better and then eventually went away. As Adriane said, she went on prednisone for a short time or as cubby said, neurontin works but I don't think you would need that high of a dose. Cubby was doing really bad at that time and did what she HAD to do to survive all the pains that were going on, not just her feet. I was on a lower dose but it really helped me. It should pass...I just don't remember how long it took for me and everyone is sooo different.
I hope this was of some help! Hang in there!!
Lucci
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Post by ginger on Nov 20, 2009 17:57:37 GMT -5
My feet started to become numb about five years ago. I was convinced it was Sjogren's, since I also have the dry orifices, but my blood test for Sj was negative. Neurontin was prescribed, but I haven't tried it yet. Most of my pain is my toes...like they're being smashed, and mostly when I go to bed...I sleep on my stomach. I also have LOTS of back pathology, and then a sort-of diagnosis of sc. I think I'll go take a Neurontin and see what happens.
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Post by christel on Nov 20, 2009 18:29:42 GMT -5
I, too, have feet that are just plain awful--I am also unable to walk barefoot on anything but the most cushioned surfaces. Many years ago, I had an ischemic ulcer on the bottom of my big toe, and so now I regularly inspect my feet (as a diabetic would) on a regular basis.
Christel
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Post by christel on Nov 20, 2009 18:31:30 GMT -5
P.S. Did I mention that I do it regularly?!?! ;D
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Randy
Junior Member
Racing Gloves on!
Posts: 81 
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Post by Randy on Nov 21, 2009 17:08:18 GMT -5
Hi Peggy, et al.,
Yes, I am another that has the terrible problem with hard surfaces. As a result, I am constantly in tennis shoes with acceptable cushioning. I also have the dreaded peripheral neuropathy (PN). Lyrica has really helped my PN and also helps with the barefoot walking on hard surfaces.
I am currently trying to get my insurance company to "cover" costs of an electrical stimulator-type device called "The Rebuilder". Another posting PN sufferer, Winstin, has claimed great results using it.
I have now been on AP for 23 months and I am doing extremely well and I continue to see small improvements everyday. Although I think my PN has improved in many major ways, my barefoot walking has not improved yet. I am REALLY looking forward to the day when I can say, like Jeff, that this SD problem has gone away.
Randy
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Post by ginger on Nov 21, 2009 17:24:58 GMT -5
I took one 300 mg neurontin yesterday afternoon and my feet still don't hurt!!!! What a wonderful drug, if it just keeps working. It knocked me out, so I think I'll take it at bedtime, but my daughter tells me that will wear off when my body gets used to the new medication. Thank the Lord and thank the PA that gave it to me, and thanks Cubby for relating your experience with Neurontin..it inspired me to try it. Today my feet actually feel flat...they've felt round and I've felt unsteady. I am an avid bare foot person, so this is wonderful.
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Post by steve201 on Nov 21, 2009 20:41:11 GMT -5
they don't call me "TenderFoot" for nuthin!!...
Steve
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lucci
New Member
Posts: 49
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Post by lucci on Nov 22, 2009 10:21:59 GMT -5
Ginger,
I'm so happy to hear that neurontin helped you!!! It helped me too !! I was on it for about 10 mos. until I started to feel better. As I said before, I am no longer on any of those types of drugs and my feet are completely back to normal(Thank-God)!! I am only on cellcept and nexium.
As your daughter said, the drowsiness will wear off as you get adjusted to it.
Great news and good luck!!
Lucci
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Post by jeffn on Nov 22, 2009 13:56:02 GMT -5
I see it mentioned often that this type of pain increases when we get into bed. For me not so much the pain on the bottoms of my feet but the shooting pains and push pins pain in the hands and feet would increase. I used to call the shooting pains etc. "nerve pain". Anyway has anyone ever read or know whay that is? Glad mine is gone but always have been curous about it.
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lucci
New Member
Posts: 49
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Post by lucci on Nov 22, 2009 17:35:49 GMT -5
Jeff,
Wish I could help you out there but I never experienced the nerve pain or the pins and needles pain in my hands or feet. They just ached severely! My feet felt like they were so tender on the bottoms that sometimes I felt like I was walking on pebbles! OUCH!!!
That's all gone now but sometimes the bottoms of my feet get really hot...weird but not painful!!
Lucci
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