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Painful Skin


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#1 Seton

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Posted 29 December 2009 - 03:41 AM

Question? I know I was reading about painful skin before, I can’t seem to find it,any help would greatly be appreciated. My skin below my knees is very painful almost feels like a bad sunburn. Is this related to Scleroderma?

Best wishes in the New Year,
Seton

#2 Sheryl

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Posted 29 December 2009 - 10:17 AM

Seton Look under the message I'm new and scared by Annieb. About 13 or more messages down. I hope that is the post you were referring to. If not let me know and I will keep looking.
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#3 Seton

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Posted 29 December 2009 - 11:32 AM

Sheryl,

Thanks I think that is the post I reviewed earlier. I can’t tell what is going on but something has changed I have pain all along my shins. I can’t tell whether it is nerve or skin pain. It hurts constantly. I don’t think it is shin splints because I have had them before and the pain feels different. I was just wondering if this sounds familiar to anyone. I will be heading back to the doctor at the end of January, hopefully I can hang tight.

Thanks you for your help, I always feel better asking question here

Happy New Year’s,

Seton

#4 Sheryl

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Posted 29 December 2009 - 10:43 PM

Seton, that is one thing I don't have is shin pain. I am knocking on wood to keep that from happening to me. Hopefully, a few others that have this condition will respond soon. Happy New Year to you, real soon as well.
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#5 Shelley Ensz

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Posted 30 December 2009 - 12:17 PM

Hi Seton,

For any new or different pain, it's really not recommended to wait that long to see the doctor, usually. You might want to consider making an appointment with your primary care doctor, asap. Talk to your clinic nurse, possibly, to see exactly how soon you should be seen.

Sometimes things that are easily remedied are much more difficult to treat, later on. I'm not sure what you are experiencing or what is causing it, but it sounds like it falls into the category of new, different, and bothersome (rather than usual, know what it is, just no treatment for it category), so I vote for a doctor visit soon; not necessarily emergency treatment (it is the holidays) if it is bearable, but also not quite so far out as the end of the month, either.

Of course, I have no medical training at all. Jeannie even has more, because she watches those doctor shows on TV. I am also dismal at magic, but I will wave my magic wand to try to make it feel better in the meantime, anyway.

:fairy:

There now, did that help? :wacko:
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#6 Amanda Thorpe

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Posted 30 December 2009 - 12:28 PM

Hello Seton

I can relate to skin pain and I associate it with scleroderma. In the beginning it was a much more frequent occurance than it is now and I am pleased to say as is the shin pain. My sclero started on my right shin, spread to the left shin then went to the feet etc.

At the time I could only wear soft clothing and not for long, had to have satin bedding, couldn't stand washing and was constantly uncomfortable.

I hope your skin pain goes away soon.

Take care.
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#7 Seton

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Posted 30 December 2009 - 02:50 PM

Shelley, Sheryl and Amanda,

Thanks so much for all the help and information. I do feel like this pain is related to Scleroderma and I will call the doctor after the holidays. I am still a little in denial and hate to be a nuisance. Although I agree some problems are easier to deal with , if we tackle them from the beginning.

I will keep you posted:)

Seton

#8 annie b

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Posted 31 December 2009 - 05:19 AM

Hi,

I have had the terrible sun burn peeling skin and that is sore to touch even with a thin sheet on me. The backs of my legs are so tender that I can't lie down on a bed. I sit up in a winged back chair to sleep with feet propped up so I can rest/sleep without so much pain. I have shooting pain into my shin bone too - electrical in sensation.

I have been taking pain pills and that gives me back burner pain that I can live with during the day - nights are giving me about 1 1/2 hrs of sleep for the pain can't be masked effectively. I have been told that this condition with poison ivy looking like eruptions that weep/bleed and peel are a separate problem from the scleroderma (generalized) and for some reason the dermatologists have not treated it. I guess I need to go back and get help.

I have been using some diabetic creams and the oils actually soothe, nothing else does they just linger on top.

I am on prednisone now too and maybe it will begin to heal the sores. I think one is supposed to take folic acid and calcium if on that drug so you don't have bone loss. I will be weaned off the prednisone once the scleroderma drug is in my system, several more weeks of building up to the needed level.

My feet are becoming immobile and that is very scary. I will see a physical therapist for an evaluation next week and begin stretching exercises among others to slow it down. Yesterday I spent over 2 hours having MRI's on my arms which apparently are headed that way - not the infections. The doctors think this disease is moving very quickly compared to others that they have seen.

I have been put in a research study group - hope we will all get some answers and find us all in remission. I am thinking I need to plan for a service balance dog if I can find or afford one. Does anyone know how to go about this and is it a good idea? I will fight being in a wheelchair as long as I can. If is snows I am going to drag my old toboggan out of the barn and take at least one more ride down the hill - even if I leave the sled for someone that can run back up the hills and enjoy many seasons of running :)

Happy New Year to all of you. Thanks for sharing and helping me through these terrible days of self-discovery.

Annie B

#9 Amanda Thorpe

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Posted 31 December 2009 - 07:29 AM

Hello Annie

Thank you for sharing your journey with us. It has many downs but there are also many ups and they'll come when you least expect it and in ways you least expect.

I have to use a wheelchair if anything more than a few minutes walking is involved. I have had diffuse sclero for 3 years and have been using the wheelchair for 2 and I still dislike it. I accept it as a necessity but I don't like being in it and am hopeful that in time I will be able to live without it.

My scleroderma, like yours, moved very rapidly and I went from being able to disabled and unable to work within the space of 6 months. Looking back I think the fact that it was so rapid was actually a good thing because I had no time to think or dread what was coming, I just had to get on with it.

I'd be interested to know what the eruptions turn out to be and hope you get some relief from them soon.

Take care.
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#10 Deb1million

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Posted 01 January 2010 - 07:31 AM

Hi ladies,

I can relate to the shin pain, now and in the past. I had a very painful condition on both my shins about 20 years ago, and it was called Erythema Nodosum. It was like the flesh had dissolved from under my skin and left just red sore skin covering the nerves. I still have scars/dents in my shins. I'm also type 1 diabetic, and was told at the time that its just 'one of those things'. I've since read that its another autoimmune condition (I now have TEN but am doing okay so far.)

The pain I have now in my shin is different to the Erythema Nodosum, its a sudden shooting pain like lightning which runs down the front of my right shin bone. Ive noticed a mention of shin splints here, but have never heard of that before, so don't know if it could be that, or anything to do with the sclero?

I'm somewhere in between the 'new and scared', and 'had it a while and calmed down' camps, and I haven't had time to read much on the forum lately, so would appreciate any input about this most recent pain, as I'd not considered it could be part of my systemic diffuse sclero. I'm also having very very sore soles of my feet, both hips have bursitis, and my hands have become very swollen and painful, so maybe I'm just having a flare up of the Lupus/SSc/MCTD?

I don't know what to do to lately as the pain in so many places, and it gets me down.

Sorry, I didn't mean to moan so much. I'm normally very upbeat.

Debs

#11 Honey

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Posted 01 January 2010 - 07:38 AM

Happy New Year to All!

May we find restoration to our health and peace for our family and friends.

Annie, I, too, can relate in a small way to what you are living with. I have systemic sclerosis and was diagnosed a year ago this month. Prior to the diagnosis, and what prompted me to see a rheumatologist, was the skin symptoms that occurred in my feet, first with swelling and no pain, then after a few weeks, warmth, tenderness, pigmentation, and skin tightening. There was such intense pain, as , if electrical charges were being applied, and I couldn't wear shoes or socks. The sheets and blankets hurt so badly, I couldn't use them to sleep (if I could sleep at all). Like you, it hurt so much to have anything touch my feet, and because I couldn't wear shoes, if I hit my foot or something fell on it, the pain was unbearable! It was like they were on fire!

After the diagnosis, I was prescribed neurontin for the pain. But, as the disease progressed the tops of my feet and ankles started to crack and peel. I applied lotions and creams, it seemed all day and night, but it did not stop the skin from peeling. After a year, the neurontin has eased the pain somewhat in that I can walk, thankfully, but shoes and socks are still painful because the skin is so tight. The "electrical charges" that were constant in my feet happen only a few times daily. My ankles and feet continually crack and peel, and I apply cream throughout the day. This is just a daily routine now.

I hope you find relief very soon with the correct diagnosis. I was fortunate that my rheumatologist gave me a suspected diagnosis as soon as she saw me. Of course, there were other conditions that were present and had occurred physically that led her to this conclusion. I had the necessary blood tests, but they could not confirm scleroderma due to normal ANA levels. A skin biopsy confirmed her suspected diagnosis. I have been introduced to more doctors in specialized fields than I ever thought I would...cardiologist, pulmonologist, endocrinologist...all for my health to be monitored.

Kindest regards,
HONEY

#12 Honey

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Posted 02 January 2010 - 06:05 AM

Hi, Seton.

It was not my intention to not reply to your post of a bad sunburn feeling in your skin around your knees and lower legs. That is a good description of the feeling. You are not alone in that symptom. I would say that it is even more painful, as I described the pain in my feet. The resulting cracking and peeling is a pain of its own.

I have found so many different symptoms and physical results that this disease encompasses...some that I have not experienced that others have, and I am grateful for that. I believe each individual's journey is similar to others, but personally designed by the body. We are on our own path of destiny with our disease, hoping for another joyful day along the way with peace for our family and friends.

Isn't it a relief that we can compare and discuss our pathways with each other?

Warm regards,
HONEY

#13 Jeannie McClelland

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Posted 02 January 2010 - 06:25 AM

Hi Seton,

I've had that feeling of sunburn, but without any reddening of the skin for quite a while now. Since I was getting more and more numbness and tingling in my hands, feet, and legs, as well as experiencing episodes of imbalance (not dizziness - no spinning or whirling sensation), my rheumatologist sent me to a neurologist who diagnosed small fiber peripheral neuropathy which is also affecting my autonomic nervous system.

The neurologist said he believed it is connected to the scleroderma, although other autoimmune diseases are apparently more likely to get this. He could prescribe something for the burning feeling that will alleviate it and was suggesting Neurontin (gabapentin). It's another one of those glorious symptoms we get where they hope treating the underlying cause will help prevent progression. Hmmmm~

HOWEVER! Having told you what my diagnosis was doesn't mean that it is going to be yours and I'd definitely say see your doctor about it. My medical knowledge is pretty out of date - I stopped watching the medical shows when Young Dr. Kildare started collecting his pension. Posted Image
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#14 Amanda Thorpe

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Posted 02 January 2010 - 12:04 PM

Hello Debs

Congrats on the 10th autoimmune disease!

I also get shooting pains in my feet and ankles. I used to get them in my shins but they stopped. My rheumatologist recently described it as neuropathic pain, previously another rheumatologist said it was trapped nerve(s) as a result of the tight skin so who knows! Do make sure you metion it though as there are treatments to help with nerve pain, I was prescribed amitriptilyne for it and it does help.

In my pre sclero days when I used to run I suffered with shin splints and boy were they painful! Basically the muscles in the calf become overworked and pull at the shin bone which s where you feel the pain. I had many rounds of painful physio to overcome them and what a waste that turned out to be! :lol:

Take care.
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#15 smac0719

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Posted 03 January 2010 - 10:51 AM

Hello Seton. I developed skin pain within the first year of my symptoms and it lasted about a year or so (started my symptoms in 2004 and diagnosed in 2007). It was limited to my arms and legs though. Clothing, sheets, and the likes didn't bother me as much as someone touching my skin. I have a friend who would lightly hit my arm every time she spoke. It's just something she did and it took a while to get her out of that habit as it caused me immense pain.

I hope you can find some help in treating your pain soon.
I may have Scleroderma, but Scleroderma doesn't have me!