Ok, WHY in the heck does my skin hurt?

prairieannie
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I know others have mentioned this as a symptom.. or maybe I was just imagining that!! LOL, but DAMN! This is an ongoing thing for me, but today it was bad. My skin feels like I have a horrible sunburn~ well, that's the closest thing I can compare it to.. Kind of burning, stinging, very painful. My thighs, my entire back but worse on my upper back, and my upper arms. It's usually in the same places, but sometimes much worse than others. It hurts to wear clothes. I can't stand it today.. No rash, no outward indication of anything wrong, just pain.

Does anyone know why? Does anyone share this symptom, and if so is there any relief for it?
Thanks for any info you have..

23 replies

Tippy

Prairieannie,
I suffer with this same pain, I take Hydrocodone 5-325,
It is very effective with no drugged type feeling. The 5 means 5 mg of Vicodin, which is a narcotic, the 325 means 325 mg of Tylenol. One should not take anymore than the recommended dosage as Tylenol is Acetaminophen, which if taken in larger doses can cause Liver damage. It gives me great relief, I also have the stinging burning, especially on my lower legs etc. I have been using it for the past year with good results.

Tippy

Jackie7

OMG, I know the feeling. My skin pain is always in my lower legs and feet. Sometimes just a little breeze can hurt so intensely. I don't know what causes this and I've just been living with it for the past 20 years. This is hard to admit but I do quite a bit of crying. A short time ago I finally buckled under the pain which includes joint pain as well and asked my EX PCP for pain medication and he refused. I was going to search for a new Primary Care Physician but my husband was laid off last week and I've lost my insurance.

I've never heard of Hydrocodone but I would be pretty darn grateful for some. This recent flare up in skin pain has been the worst and now my lower back and neck have decided to cause me grief too.

I'm so sorry you have this aspect of Sarc, PrairieAnnie and I hope you find relief soon.

gonenatural

Hi All,

Who ever can take vicodin is lucky, it keeps me awake and the dose that Tippy takes, double it and it doesn't touch me and it keeps me awake for days, better than caffiene, I have an adverse effect.

I admit on this site that I cry. Now I cry almost every day. The pain is worse now the cold has set in. And skin, muscle and joint pain, omg. I've had it more yrs then I can remember. It hurts to touch but what I wouldn't do for a deep massage. You wouldn't think it would help but for most of us it would.

Sorry Jackie about your issues at this time of yr.

I find a jacuzzi helps or a hot bath, muscle rub, drink slippery elm tea, but they are so short term. My dr refuses to dispense drugs also. I received the vicodian from a nerologist but he is 2 hrs away. He has been treating me for Fibromyalgia.

Good luck and you are not alone,
Gone Natural

micheleb

Luckily, my skin seems to be unaffected by the sarc. However, I wonder if the pain you are describing is more nerve related since there is no visible sores or rash. I wonder if something like Lycria would help. Its not a narcotic, it just helps with nerve pain. Maybe google it and see if it might be something worth asking your doc about. It seems to help me with some of my funky pains and I know others on this site take it as well. It is pricey but there are a couple of other drugs that are similar and much cheaper, gabapentin and neurotin, not sure on the spelling of those!

challeneged

I have had terrible pain in all areas of my skin. especially my legs. I actullay went to the hospital ER for it and was told that it was celluitis (a skin infection)

But I hurt just to be touched anywhere on my body. My son has to be very careful when he hugs me, when the cat jumps on me a sometimes scream in pain.

My pulmonologist has told me that it very well could be due to the sarcoidosis, but even if it is, it is all treated with the sames meds I am on for the lungs, eyes, liver etc etc etc.....

I can take vicodin, but unfortunately have no insurance right now so I resort to over the counter med that barely touch it.

bless46

I'm currently going through the skin pain too, I hurt so bad at times I try to sleep so I wont feel the pain. My pain is in the legs/ankles/feet they stay swollen, they said it's build up fluid (edema) which only go away when Im laying down with my feet propped up then once i sit up or walk everything swells again. I haven't been able to wear shoes I can only wear slippers because of the swelling and the touch of my skin on the feet hurts.

Also I have the red rash on the front of both legs below the knees they said its from the sarcoidosis also I have had cellulitis twice which I recently came home from the hospital after staying for (5) days on IV with antibiotics/triple doses of prednisone to clear up the infection also they did a skin biopsy on (2) spots of the leg it was painful Im still in pain but ......I can only take tylenol or advil because of other medical problems. I have a appointment to see a Rheumatology doctor i pray she give me some answers....

mekh331not

I suffer similar symptoms. I find that pregabalin (lyrica) helps considerably.
Hope that this helps.
Wishing you luck and improved health.
Regards,

prairieannie

Thank you all for the info. I do currently take Vicoprofen.. Vicodin with Ibuprofen. My doctor decided not to give me acetemenophen because my liver is so enlarged. The Vicoprofen does help sometimes, but yesterday it just wasn't touching the pain. I have days like that, where nothing works. I'm very fortunate that my doctor knows that I'm in pain and is very good about making sure I have at least the Vicoprofen to help. I'm now wondering if Lyrica would be a wiser choice. Thank you for the suggestions. I'm sorry we all have to put up with this crap, but I'm not sorry to know that we're all in it together!

silvercivic

Oh,yes...that sunburn feeling. I had it for about a month and then it passed and hasn't returned. All of the pain I have can be in one spot in one minute then move to another spot....an endless cycle. Don't be afraid to cry my friend. It is an outlet that let's all of us cope. I am a 56 year old male and not ashamed one bit to admit that I cry sometimes. I don't think that the doctors should hold back giving us whatever meds it takes to make us as comfortable as possible.

Cloudnine

I have that skin pain also and have to watch the clothing that I pick to wear. Some days it is worse than others and I also use Lyrica. I wear undershirt and night clothes inside out to keep the seams from rubbing on my skin. It is better since being on the Lyrica.

fairlight

I like cloudnine's solution. I've never thought of that, but I'll try it today. I've had the skin pain for years, usually followed by a nasty bout of itching. The digging my skin until it's bruised kind of itching. At first I thought it might be allergic reactions, but as time went on, it was obvious that it had to do with sarc. No rash, just itching. Sometimes, a benedryl helps.

Mark_K

I get painful skin on my feet / ankles. I haven't found anything that gets rid of all the pain from it. It only seems to get really bad when I'm having a flare up.

Mark

Gingerbeer

I get this primarily on my legs and the top of my feet. Today it's my shins. I like to wear tight leggings, so I consider it just the price of beauty. Nothing seems to make it go away. I'm in the middle of a flareup that seems to be waning, so at least I have the hope that this will be over soon. At least the foot swelling has gone away, although the pain is still there.

I'm not sure if this is valid, but I just have this notion that movement and massage helps. Or perhaps it's just a distraction from the pain, since pain levels are notoriously hard to quantify and it would be difficult to discern a small reduction, and oh-so-easy to credit any such perception to anything random that we did in response to the pain. That being the case, I'll just self-medicate with chocolate.

jennlee28

Hi Everyone,

Well, I've been reading through some of the posts that people have left on this site and I wanted to respond. I feel so bad even being on this website because to be honest with you, I'm not sure if I have an acute or chronic sarcoid. I've only had symptoms since July which actually started with Erthema Nodostrum (the skin rash that is located on the front of the legs, below the knees (I forget who posted about the sore rash on the legs and they were going to see the rhuematologist). I've actually already seen him and he did tell me it was Erthema Nodostrum (I also had a biopsy done on one of the bumps by a dermatologist before that). So, if your wondering what that painful red bumpy rash is, that's exactly what it is (of course, you may want to have a doctor confirm). That and swelling in my ankles along with sudden arthritis symptoms were the first signs of sarcoid for me. Anyways, I have to say that I pray for all of you that are living with chronic sarcoidosis. I've only had symptoms for about 6 months now but I just feel that it's enough for me.

teeteeme

Yup, me too! It happens randomly. It hurts to wear even the loosest clothes. and I also get the itching randomly. That happens less often and doesn't last as long, but it is like my skin is crawling with bugs all over when it happens, I want to scratch/peel everywhere.

I must say I have been really lucky with Drs. and meds or all kinds, especially thankfully pain meds, I hurt in so many places, so much, it is too much to start listing. I even recenly had a spinal cord stimulator put in to try to help the pain. I have never been denied pain meds by any drs. even before I started going to the pain management center at Stony Brook, I even stopped there for a while and went to one closer to my home, and he continued and even added stronger pain meds. I left him because of his "bedside manner", not just to me, althought he thought he was God's gift and repremanded me one time about an administrative issue, but I had started hearing stories of other people who HATED him, not because of his abilities, but his personality and attitude. then I witnessed with my Mom, him yelling at another patient in the waiting room, about using up his perscriptions. That was the final straw for me, I went back to my old Dr. who was horrified when I told him. I love this Dr. he is very in tune to my "mood" and regulates my anti-depressants accordingly (he is a GP and a Psyciatrist) and he will raise or lower my pain meds, depending on what I need. He listens, and is usually open to trying different meds if I want to try something to see if it works better, if it doesn't we go back. He never rushes, I am usually with him 30-60 minutes depending on what is going on with me. He has told me that I am one of his "normal patients", I have been seeing him for about 12 years, so we have developed a great level of trust. I even have is cell phone # which I know is not something he gives to many people. He communicates with my other Drs. I am truly blessed with this part of my treatment. Now if he could just perscribe a "cure"....... God Bless! Tee

Mani

Hi there, I too get severe "sunburn" like pain in my lower legs mostly below the knees. This pain happens with extension, flexion or any movement whatsoever. I also have a band like rash just above my ankles. It burns 24/7 and is distracting to say the least. I am sure this is caused by the sarcoid/neurosarcoid. I was on Lyrica, but found that this did not help me at all. Even rubbing my legs hurts, shaving or applying moisturizing lotion too.

Unsure

Wow. I have just started getting these painful, burning and sometimes itchy bumps on the backs of both of my upper arms, but in previous years, prior to hearing even the term sarcoidosis, I have had them on my neck, chest, and hands. They hurt something awful, which is why I can't sleep now at 4:59 in the morning, despite how awfully sleepy I am. The best to you all.

smormac

I started with the same symptoms about two weeks ago, so when I saw the title of your post I opened it right away. I read your post to my husband, and he just shook his head. At least we know I'm not going crazy, which we thought was a possibility. Since it's winter, and too cold to run around naked, I've found the softest clothes I can find to wear. Most of my "burning" sensation is upper back, shoulders, and chest. Occasionally I get it on my thighs. I'm going to a new doctor on Dec. 16th who has just finished a sarc rounds at University of Michigan. We will see what he thinks. I have found that most doctors don't know what to do to help me. Good luck!

gnomelady

Guys, what you are describing is small nerve fiber neuropathy, and yes, it's the sarcoidosis. What I have found helpful is Neutrogena's Norwegian Formula Body lotion. That seems to settle it best. Also, dehydration makes it worse, as does high blood sugars.
We run constant low grade fevers with the systemic effects of sarcoidosis, so we are constantly on the edge of dehydration.
Stay away from soda's, high fructose corn syrup juices and drinks, and caffeine drinks. Herbal decaf teas are great and the ones with Chamomille seem to work to calm the whole system.
I also am an advocate of MSM-- it's a natural mineral that we've managed to deplete from our soils and foods-- there is supposed to be 85 minerals and nutrients in our foods and soils, and we only replace 3 in the soils.
Microwaving, freezing, boiling-- all the stuff we do to foods destroys so many of the nutrients so we are majorally deplete.
MSM powder or tablets work so well to help with the neuropathy pain, along with that horrid "inside" the bone pain. You will also see a huge difference when you increase your fluid intake-- as our muscles and ligaments are supposed to be floating in synovial fluids, which act as a buffer between the nerves and muscles- so when you get that issue taken care of you will be so much more comfortable.
At first, you'll have more swelling in your hands and feet, from the added water-- but once your body gets the signal that you aren't starving it for water, it can actually start storing it where it doesn't belong. Your pee will turn from dark yellow to almost totally clear. And by keeping the electrolytes in balance, you wont have as much nerve pain.
My neurologist was able to dx my small nerve fiber neuropathy with EEG and EMG tests.
Hope this helps,
gnomelady

vgirl

your skin hurt because of the inflammation I use turmeric which really helps with the pain. I am useing turmeric every day and I don't feel no pain. Give it a try and let me know how you feel.

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