Skin Pain And Sensitivity

[pondy]

Does anyone experience skin pain and sensitivity?

This seems so strange, but every time I'm touched, I just flinch because it irritates my skin. This is especially true of my shoulders and back.

The friction of putting lotion on my shoulders is so bad - I use baby oil instead because I can just pat in on.

It's even in my fingertips! Typing is irritating, washing my hands is too.

What is this?

I don't really want to bring this issue to my doctor - I already feel crazy with all these odd symptoms...

Any and all insights are really appreciated!

[Fire Fairy]

Well I don't have the same problem but....before going gluten free when I was early in the stages of migraine sometimes my calves would hurt when touched. I'd wake up lying on my side and my calves felt very sensitive touching each other. My way of describing it may not make much sense but it felt like the flesh was wrapped in tight cling film instead of skin. Another symptom was feeling like my shoulders were being pulled down. And I often had scalp pain. That felt like my hair had been pulled really really tight.

[SGWhiskers]

Before diagnosis and while I was in the intial months of healing, this was a major symptom for me. It hurt to towel dry after a shower. That was when I knew my doctors were full of crap and I needed to get aggressive with finding out what was wrong. I remember curling up in a ball and crying to my husband one day because my towel and my sleeves and his touch were hurting my skin so badly. I had already been to a neurologist to no avail.

Once I got my diagnosis, it took a few weeks, but things improved a little. The stricter I got with my diet, the better my skin felt. After about 3 months, the towels and sleeves didn't hurt anymore. 6-9 months later, I was able to tolerate my husband nicely touching my arm or leg without it making my skin crawl. Now 2.5 years later I'm retraining him to give me a back rub like a normal person again.

Time on the gluten free diet really does move faster the longer you are in the diet. Hang in there. It's hard to believe now, but it really does get easier as time passes and as you see baby steps toward improvement. As a side note, all of my neurologic symptoms have improved on the gluten-free diet, but not have been eliminated totally. Almost all are back to a level which is intermittently annoying, but not impairing.

Trigger point therapy was very effective in helping speed up getting rid of the muscle knots that went along with my tender skin. I had both trigger point injections and a physical therapist who taught me trigger point release to do at home. I was pretty aggressive in doing 30-90 minutes at night before bed while I watched TV.

[IrishHeart]

Before diagnosis and while I was in the intial months of healing, this was a major symptom for me. It hurt to towel dry after a shower. That was when I knew my doctors were full of crap and I needed to get aggressive with finding out what was wrong. I remember curling up in a ball and crying to my husband one day because my towel and my sleeves and his touch were hurting my skin so badly. I had already been to a neurologist to no avail.

Once I got my diagnosis, it took a few weeks, but things improved a little. The stricter I got with my diet, the better my skin felt. After about 3 months, the towels and sleeves didn't hurt anymore. 6-9 months later, I was able to tolerate my husband nicely touching my arm or leg without it making my skin crawl. Now 2.5 years later I'm retraining him to give me a back rub like a normal person again.

Time on the gluten free diet really does move faster the longer you are in the diet. Hang in there. It's hard to believe now, but it really does get easier as time passes and as you see baby steps toward improvement. As a side note, all of my neurologic symptoms have improved on the gluten-free diet, but not have been eliminated totally. Almost all are back to a level which is intermittently annoying, but not impairing.

Trigger point therapy was very effective in helping speed up getting rid of the muscle knots that went along with my tender skin. I had both trigger point injections and a physical therapist who taught me trigger point release to do at home. I was pretty aggressive in doing 30-90 minutes at night before bed while I watched TV.

Thanks for this post, Pondy. I have asked others on here, but no one seems to have this pain except you guys.

SG whiskers!

This is so encouraging!! (I am actually crying with relief as I read this.) THIS IS ME!! I am in awful pain, especially my neck, shoulders, legs. It hurts to sit, stand, lie down. I BURN everywhere. The shirt on my back is painful. It hurts to comb my hair. I feel as if I have a sunburn 24/7. Everything is abrasive.Even my face hurts.

I had trigger point injections and months of PT but the PT and I have concluded I won't get rid of the knots until I heal some more (2 months gluten-free)

I'll just hang in there.

So happy you got relief!!

[IrishHeart]

Well I don't have the same problem but....before going gluten free when I was early in the stages of migraine sometimes my calves would hurt when touched. I'd wake up lying on my side and my calves felt very sensitive touching each other. My way of describing it may not make much sense but it felt like the flesh was wrapped in tight cling film instead of skin. Another symptom was feeling like my shoulders were being pulled down. And I often had scalp pain. That felt like my hair had been pulled really really tight.

I have this scalp pain and weird sensation, too. I tell hubby I feel as if I am encased like a sausage..tight tight tight (it's the inflammation, I think)

[Fire Fairy]

I have this scalp pain and weird sensation, too. I tell hubby I feel as if I am encased like a sausage..tight tight tight (it's the inflammation, I think)

That is exactly how my calves felt. Thank you for phrasing it the way you did. Yay, I'm not insane!

I feel better now, I'm 4 months gluten free. I know my gut isn't entirely healed yet but I do feel an awful lot better. I hope your symptoms all lighten up and go away soon.

[IrishHeart]

That is exactly how my calves felt. Thank you for phrasing it the way you did. Yay, I'm not insane!

I feel better now, I'm 4 months gluten free. I know my gut isn't entirely healed yet but I do feel an awful lot better. I hope your symptoms all lighten up and go away soon.

Thanks... it IS a bizarre feeling, I know; I have lots of bizarre symptoms (burning mouth, for example, among others )

Glad you are feeling better!!yaay!!

No, you are not insane, I'm not insane (although I was pushed to the brink of insanity)

NONE of us are insane...we are just not diagnosed properly AND LEFT TO WORRY ourselves insane.

I swear I am going to write a book about the dark side of this disease.

it's waaaaay more than just stomach trouble..... and people need to know that!

[Fire Fairy]

Thanks... it IS a bizarre feeling, I know; I have lots of bizarre symptoms (burning mouth, for example, among others )

Glad you are feeling better!!yaay!!

No, you are not insane, I'm not insane (although I was pushed to the brink of insanity)

NONE of us are insane...we are just not diagnosed properly AND LEFT TO WORRY ourselves insane.

I swear I am going to write a book about the dark side of this disease.

it's waaaaay more than just stomach trouble..... and people need to know that!

I would buy it! It would be great if more people were educated. It would save lives if people were educated!

[IrishHeart]

I would buy it! It would be great if more people were educated. It would save lives if people were educated!

You got that right, sister!!

oh, I intend to educate every single "medical professional" I saw in all the years of searching for answers (my story is really LONG and complicated) and not one of them helped....jerkwads ..... LOLLOL

[YoloGx]

My friend Graeme has this same problem. It seems like it has something to do with an over-toxified liver which in turn affects the skin since the skin is another detoxification pathway.

Eating more veggies, especially greens and things like parsley should help.

Taking dandelion root capsules or powder in hot tea should also help you detox. Assuming you can handle dandelion taking that is...

Remember when taking herbs to always avoid any and all immune stimulants since that is the last thing someone with celiac needs given we already have an overactive immune system.

Exercise and saunas also should help. And of course drinking lots of pure spring water.

Please let us all know if any of this helps or not. If none of the above works, it could be caused by salicylic acid sensitivity.

Even though this skin condition hasn't been reported a lot here, I think it may be more common than some of us think. The causes for it however could well vary.

For Graeme for instance it seems to be related to his overtaxed adrenals and sluggish thyroid plus a tendency towards RA. Diet, exercise, detoxification and of course being off all gluten seems to help him out. For him he also has to avoid eating quick sources of iodine like kelp, cabbage and kale.

Bea

[txplowgirl]

There are days when I have a hard time wearing any type of clothing at all. It litterally hurts. According to my rheumatologist, it's my fibromyalgia. The nerves in the skin are in overdrive and can't turn themselves off. Uuuhhhh, not a good day when that happens.

[pondy]

Thanks... it IS a bizarre feeling, I know; I have lots of bizarre symptoms (burning mouth, for example, among others )

Glad you are feeling better!!yaay!!

No, you are not insane, I'm not insane (although I was pushed to the brink of insanity)

NONE of us are insane...we are just not diagnosed properly AND LEFT TO WORRY ourselves insane.

I swear I am going to write a book about the dark side of this disease.

it's waaaaay more than just stomach trouble..... and people need to know that!

Thank you so very much! It feels great to be among people who "get it"!

I've felt very dismissed by some of the professionals I've seen. Granted, I had worked myself into a panic because I was so worried - I knew something wasn't right.

Now that the Celiac has been confirmed (by an upper scope & the blood test)I feel like they trust that I'm not crazy.

I agree that folks need to be educated. All these other issues related to the disease can seem so random.

Apparently they're not though.

Seems like every time I post about a symptom, someone can relate. What a relief to know we're not alone!

[pondy]

Before diagnosis and while I was in the intial months of healing, this was a major symptom for me. It hurt to towel dry after a shower. That was when I knew my doctors were full of crap and I needed to get aggressive with finding out what was wrong. I remember curling up in a ball and crying to my husband one day because my towel and my sleeves and his touch were hurting my skin so badly. I had already been to a neurologist to no avail.

Once I got my diagnosis, it took a few weeks, but things improved a little. The stricter I got with my diet, the better my skin felt. After about 3 months, the towels and sleeves didn't hurt anymore. 6-9 months later, I was able to tolerate my husband nicely touching my arm or leg without it making my skin crawl. Now 2.5 years later I'm retraining him to give me a back rub like a normal person again.

Time on the gluten free diet really does move faster the longer you are in the diet. Hang in there. It's hard to believe now, but it really does get easier as time passes and as you see baby steps toward improvement. As a side note, all of my neurologic symptoms have improved on the gluten-free diet, but not have been eliminated totally. Almost all are back to a level which is intermittently annoying, but not impairing.

Trigger point therapy was very effective in helping speed up getting rid of the muscle knots that went along with my tender skin. I had both trigger point injections and a physical therapist who taught me trigger point release to do at home. I was pretty aggressive in doing 30-90 minutes at night before bed while I watched TV.

Thank you for sharing your experience as well as your wisdom.

Towel drying after a shower is a big issue for me also.

I have not heard of trigger point therapy, although I see that my YMCA offers trigger point massage. I'd like to check it out, though not now. Just the thought of a massage makes me hurt.

I'm hopeful though, because of posts like this.

I believe you when you say it will get better.

I know that I just have to be patient with my body & keep working at becoming completely gluten free(I live in a mixed household, plus I'm still learning what to have and what not to have)

Thanks again for your helpful share.

[IrishHeart]

Thank you for sharing your experience as well as your wisdom.

Towel drying after a shower is a big issue for me also.

I have not heard of trigger point therapy, although I see that my YMCA offers trigger point massage. I'd like to check it out, though not now. Just the thought of a massage makes me hurt.

I'm hopeful though, because of posts like this.

I believe you when you say it will get better.

I know that I just have to be patient with my body & keep working at becoming completely gluten free(I live in a mixed household, plus I'm still learning what to have and what not to have)

Thanks again for your helpful share.

I used to enjoy massages for years until this burning set in. Now, it is just too abrasive. I have had trigger point massage MANY times by chiropractors, MTs, PTs, myofascial release therapist --(I even had rolfing--check that one out on google )... Plus, I learned how to do it and hubby does it for me, too.. YET I still have horrid knots and pain. They are excruciatingly painful. This was all pre-diagnosis. Now, I know WHY they remain.

My current PT (the 8th one I have seen in 3 years) says it is difficult for them to release and stay that way when there is inflammation in the body. The nerves are on high alert. The muscles are flooded with toxins from our leaky guts. She is the first person who truly understands this type of burning pain and she knows all about gluten. In fact, before I even told her about the celiac, she reviewed my symptoms, looked up from my chart and said "Do you have a problem with gluten?"

Imagine my relief to know I was FINALLY working with someone for the first time in years (and THOUSANDS of dollars later) who knew what my body was being assaulted with. Right now, I do gentle stretching at home because many months of PT work have yielded nothing but more pain. I also have pelvic floor tension myalgia which makes it difficult for me to sit, stand, lie down or walk without discomfort.( I see a "specialist" in women's PT for that problem!) All this without medication. I have tried them all. Made me sick.

Obviously, I PRAY that elimination of gluten is the key to getting relief. I am seeing many posts on here that speak of lessening of pain, so I am hopeful that as the gluten leaves my gut, my tissues, muscles and ligaments, I'll reclaim my muscle tone and my strength.

But, yes getting free of the poison is the first step.I have also eliminated soy and dairy (and recently, salicylates for a few weeks to see if that helps)

Hell, I'll eat rocks if it will give me relief.

I hope you feel better soon!!

[kyga2]

I have the same problem, although it sounds like not as bad. Like you, I haven't even bothered sharing this with a doctor because it will just get a shrug. This feeling occurs when I am stressed, but also randomly. The way I describe it to my husband is that it hurts to wear clothes. It's that feeling like when you have a fever and ache all over, only I don't have a fever. It goes away after a couple days or so. I suspect it's tied to getting glutened for me.

[IrishHeart]

I have the same problem, although it sounds like not as bad. Like you, I haven't even bothered sharing this with a doctor because it will just get a shrug. This feeling occurs when I am stressed, but also randomly. The way I describe it to my husband is that it hurts to wear clothes. It's that feeling like when you have a fever and ache all over, only I don't have a fever. It goes away after a couple days or so. I suspect it's tied to getting glutened for me.

well, I must have been stressed every day for 3 years. (come to think of it, I was because I did not know what the heck was wrong with me)

If you did tell the doctor, the first thing she'll suggest to you --after the shrug--is fibromyalgia. (a wide range diagnosis for muscle pain) I heard it frequently. One guy told me "it's fibro, even though I don't believe it exists"...say whaaa now?HUH?? He sounds like a reliable doctor, right?? NOT!!

Others told me "no, that is Not what FM feels like"...even a close friend with FM who said she's never felt "burny" either, just achy and fatigued. Like the flu.

The flu/exhausted feeling means gluten to me, too.

I am convincing my friend with FM she may have this instead/also.

It is perplexing!

Hopefully, we will all see it disappear!

[Crystal Nash]

I have seriously taken off my sports bra while in the Superstore parking lot.

I have cut all the bands inside my tanks with built in bras.

On really bad days I just wear my robe or my strapless "mu mu" as my kids call it.

It makes for a big fashion dilemma. Can I wear the giant sweat suit to Parent Teacher interviews? I think not.

And it's fairly hard to concentrate on much when all you can think about is ripping your clothes off, not in a sexy way either.

Maybe a nudist colony?

 

[Gingersnipz]

Oh wow, this is so me. It started when I took a step off the curb. My stomach jiggled a little and it hurt. It was just my left side but it slowly creeped down my body to my hips and the insides of my legs. At it's worst, my skin felt raw. Removing pants felt like cleaning gauze from a wound. Anything that touched me hurt. Soft things were even worse.

I too, feel it's connected to the muscles underneath the painful skin but I have no idea why. Using lavender and arnica have both helped me escape the discomfort, but they don't last and need frequent application.

I have been gluten free for 1 and a half years. I had a gluten exposure in October of 2020 which kicked off more skin pain that I can't seem to get rid of. Now I'm wondering if there is a mystery spice that might have gluten somewhere in my pantry. I'm going to talk to my body worker about trigger point therapy.

[Scott Adams]

Hello @Gingersnipz and welcome to the forum! This thread is pretty old, so you may not get replies from some of the original posters, but re-evaluating things you eat regularly is a great idea. I use a Nima Sensor to test things I'm not sure about, and recently discovered that a package of psyllium fiber powder I was using contained gluten (it did not say gluten-free on the package, so it was my mistake).