Does anyone else get really creepy crawly skin? It seriously feels like tiny bugs are crawling all over me and are making me itchy. It occurs everywhere but my arms, legs and face seem to be the worst. I have had this since my illness first began and it is an everyday thing but at times it flares up really bad. I have also noticed that my skin is also extremely sensitive and if there is anything on it (even the tiniest speck of dust, fiber or hair), I can feel it. Any ideas as to what could be causing this?
Creepy crawly skin?
- Thread starter acouchy
- Start date
Hi acouchy, welcome to the forums! 
There have been loads of threads about this subject here, which is of particular interest to me because neuropathic pain/allodynia/"the itching" is a central symptom for me, and I've found that tackling that symptom has led to significant improvements in all my other symptoms.
The most recent thread on the subject is here:
http://forums.phoenixrising.me/showthread.php?16188
One word of caution: although the sensation of "tiny bugs crawling all over you" is a very accurate description of what it felt like for me, particularly at onset (the sensation, I find, does vary, including also burning and stabbing pains, depending on my current state of sensitivity), this is probably not a wise description to mention to doctors - it might put them in mind of "delusional parasitosis", which is the standard way of dismissing this condition as psychosomatic.
My latest hypothesis for an explanation of this condition is damage to the recently-discovered tight junctions, which form a very thin protective layer beneath the skin, inside the gut (perhaps causing leaky gut) and in the blood-brain barrier (hence this damage might also explain digestive and cognitive impairments). Some viruses also subvert the receptors of tight junctions causing long-term damage to them, which might explain why many people get ME/CFS following a viral or bacterial infection.
My main practical advice is to identify the environmental factors which provoke or worsen your sensitivity, and to focus (perhaps necessarily in an extreme way) on eliminating them. For me, 100% high-quality cotton clothes are essential, I sleep on a leather sofa (haven't slept in a bed for years), and I use washing balls (no washing powders) and environmentally friendly washing up liquid and soaps (much experimentation was required with products like that).
Finally, I have noticed over the years that what I eat, and the state of my digestion, is closely linked with my overall sensitivity - if my gut is exposed to foods I'm sensitive to then my skin is more sensitised, and vice-versa. If you also have digestion issues, then this would probably be an important area to focus on. A careful elimination diet and close observation is probably essential to identify one's sensitivities; pretty much anything except steak, potatoes and peas can set me off, and wheat/gluten and eggs are particularly bad; I had to stick to a restricted diet and lots of supplementation (B12, Co-Q10, Omega-3, etc) for a long time, but I can now eat pretty much everything so long as I don't overdo it and return to my core diet when I become more sensitive.
So...that's what helped for me, and obviously (as always) your mileage will probably vary...but hopefully there's something there that helps you. I wish you the best of luck: it's a horribly frustrating form of pain, but in my experience at least, it can be reduced significantly with a lot of trial and error and careful observation of the triggers.
There have been loads of threads about this subject here, which is of particular interest to me because neuropathic pain/allodynia/"the itching" is a central symptom for me, and I've found that tackling that symptom has led to significant improvements in all my other symptoms.
The most recent thread on the subject is here:
http://forums.phoenixrising.me/showthread.php?16188
One word of caution: although the sensation of "tiny bugs crawling all over you" is a very accurate description of what it felt like for me, particularly at onset (the sensation, I find, does vary, including also burning and stabbing pains, depending on my current state of sensitivity), this is probably not a wise description to mention to doctors - it might put them in mind of "delusional parasitosis", which is the standard way of dismissing this condition as psychosomatic.
My latest hypothesis for an explanation of this condition is damage to the recently-discovered tight junctions, which form a very thin protective layer beneath the skin, inside the gut (perhaps causing leaky gut) and in the blood-brain barrier (hence this damage might also explain digestive and cognitive impairments). Some viruses also subvert the receptors of tight junctions causing long-term damage to them, which might explain why many people get ME/CFS following a viral or bacterial infection.
My main practical advice is to identify the environmental factors which provoke or worsen your sensitivity, and to focus (perhaps necessarily in an extreme way) on eliminating them. For me, 100% high-quality cotton clothes are essential, I sleep on a leather sofa (haven't slept in a bed for years), and I use washing balls (no washing powders) and environmentally friendly washing up liquid and soaps (much experimentation was required with products like that).
Finally, I have noticed over the years that what I eat, and the state of my digestion, is closely linked with my overall sensitivity - if my gut is exposed to foods I'm sensitive to then my skin is more sensitised, and vice-versa. If you also have digestion issues, then this would probably be an important area to focus on. A careful elimination diet and close observation is probably essential to identify one's sensitivities; pretty much anything except steak, potatoes and peas can set me off, and wheat/gluten and eggs are particularly bad; I had to stick to a restricted diet and lots of supplementation (B12, Co-Q10, Omega-3, etc) for a long time, but I can now eat pretty much everything so long as I don't overdo it and return to my core diet when I become more sensitive.
So...that's what helped for me, and obviously (as always) your mileage will probably vary...but hopefully there's something there that helps you. I wish you the best of luck: it's a horribly frustrating form of pain, but in my experience at least, it can be reduced significantly with a lot of trial and error and careful observation of the triggers.
Timaca
Senior Member
- Messages
- 792
I do not have the itchy sensation, but I have creepy, crawling "bugs" across me everywhere. I also have zinging, sparking, shooting nerve pain. Also tingling, a times burning too. For me I think it is all nerve related. Not fun, but I am getting used to it. I've had it ever since my illness started.
Best, Timaca
Best, Timaca
taniaaust1
Senior Member
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- Sth Australia
I myself have found that the creepy crawling sensation is different to what is usually refered to as itchy... thou there can be a lot of itching with it.
The CDC thou is now recognising that these kinds of conditions may be more then psychological and are investigating what is known as Morgellon's, which has this symptom.
Morgellon's can be a coexisting disorder with ME/CFS with many other CFS symptoms coming in too. I myself are fortunate as I did get rid of the Morgellons thou I still have the ME. I developed the Morgellon's after having ME for some time.
In my case when I killed whatever that is by the things I was trying to treat it with (and almost poisoned myself in the process with pure essential lavender oil Id wiped over my skin to relieve the sensations.. so I dont recommend that) .. things like small grains of rice started falling out of my fingers..coming out of my skin pores when I moved my fingers...its very weird. I kept on using things that whatever that is.. doesnt like. (I will send a pm to you of all the different things I put on my skin and soaked myself in to relieve the things I was feeling if let me know you want that info, Im one of a very rare few who has had this condition and has got rid of it).
Salt (1kg) with bicarbonate (250ml) baths ..are one thing I did daily which helped the sensations and it to clear some.. I used to stay in those baths for 4 hrs a day as my Morgellon's symptoms were otherwise unbearable.
I could actually feel things leaving my skin while in that bath. Whatever it was.. in my case used to go into like a feeding frenzy within my skin from about 11pm-3pm at night.. it became more active. Its like it came to the surface more at that time of the night.
"White sage" smudging (smoke) is another thing that parasite? didnt like and which would make it come to the surface of my skin and start coming out. (Desert sage smoke didnt bother it).
Small like crystaline rice grains is one of the forms of how it can appear when stuff coming out of ones body.. seeing small threads coming out of ones body where those sensations are is a more common way it often manifests.. with others.. it may be leaving black specks everywhere. What that stuff was which came out of my skin I put in a jar but it had dissolved by the next day. After that incident.. all the creepy crawling feelings, the being bitten feel and the itches all stopped.
Whatever it is is transmittable.. I used to see others start madly scratching even those who I'd never said anything to at all, when they sat where I was previously sitting when I could feel all the stuff coming out of my skin. Thing is with others.. obviously their body was able to kill or stop whatever it is entering them as they werent left with after affects and it the itching didnt continue on if they changed seats.
My theory is that ME makes us more susceptable to the "parasite" or whatever it is.
ohhh, I just saw that the CDC has updated their website on this this year. I previously a couple of years ago sent them all the info I had on it and my experiences of it and conclusions Ive come to due to also talking to many others also with it.
http://www.cdc.gov/unexplaineddermopathy/qa.html#why CDC quotes
I wonder how comprehensive the CDC study was. I put into a jar the like crystaline rice like grains which had come out of my skin but over night it strangely dissolved. (It looked like a non living thing, just a substance so I dont think it climbed out... it must of dissolved to the air).
Some stats thou came out of the CDC Morgellon study of 115 people who had Morgellons.
"Persons who reported symptoms were most commonly
women (84%)
Caucasian (77%) and
between 45-64 years old (64% were in this age group).
In addition to reporting fibers or other foreign material in their skin, almost all study participants had what they referred to as disturbing skin sensations. Other symptoms commonly reported included
fatigue (70%)
sleep disturbance (60%)
muscle aches (71%)
joint pain (69%)
hair loss (63%), and
neurologic symptoms such as difficulty finding words (64%) and decreased memory (59%).
Other illnesses that had been previously diagnosed by a physician and were reported by patients included
hypertension (39%)
allergies (30%)
arthritis (32%)
infectious skin conditions such as scabies (20%), or
psychiatric illnesses including
?depression (32%)
?anxiety (19%) or
?attention deficit disorder (9%).
"
The CDC thou is now recognising that these kinds of conditions may be more then psychological and are investigating what is known as Morgellon's, which has this symptom.
Morgellon's can be a coexisting disorder with ME/CFS with many other CFS symptoms coming in too. I myself are fortunate as I did get rid of the Morgellons thou I still have the ME. I developed the Morgellon's after having ME for some time.
In my case when I killed whatever that is by the things I was trying to treat it with (and almost poisoned myself in the process with pure essential lavender oil Id wiped over my skin to relieve the sensations.. so I dont recommend that) .. things like small grains of rice started falling out of my fingers..coming out of my skin pores when I moved my fingers...its very weird. I kept on using things that whatever that is.. doesnt like. (I will send a pm to you of all the different things I put on my skin and soaked myself in to relieve the things I was feeling if let me know you want that info, Im one of a very rare few who has had this condition and has got rid of it).
Salt (1kg) with bicarbonate (250ml) baths ..are one thing I did daily which helped the sensations and it to clear some.. I used to stay in those baths for 4 hrs a day as my Morgellon's symptoms were otherwise unbearable.
I could actually feel things leaving my skin while in that bath. Whatever it was.. in my case used to go into like a feeding frenzy within my skin from about 11pm-3pm at night.. it became more active. Its like it came to the surface more at that time of the night.
"White sage" smudging (smoke) is another thing that parasite? didnt like and which would make it come to the surface of my skin and start coming out. (Desert sage smoke didnt bother it).
Small like crystaline rice grains is one of the forms of how it can appear when stuff coming out of ones body.. seeing small threads coming out of ones body where those sensations are is a more common way it often manifests.. with others.. it may be leaving black specks everywhere. What that stuff was which came out of my skin I put in a jar but it had dissolved by the next day. After that incident.. all the creepy crawling feelings, the being bitten feel and the itches all stopped.
Whatever it is is transmittable.. I used to see others start madly scratching even those who I'd never said anything to at all, when they sat where I was previously sitting when I could feel all the stuff coming out of my skin. Thing is with others.. obviously their body was able to kill or stop whatever it is entering them as they werent left with after affects and it the itching didnt continue on if they changed seats.
My theory is that ME makes us more susceptable to the "parasite" or whatever it is.
ohhh, I just saw that the CDC has updated their website on this this year. I previously a couple of years ago sent them all the info I had on it and my experiences of it and conclusions Ive come to due to also talking to many others also with it.
http://www.cdc.gov/unexplaineddermopathy/qa.html#why CDC quotes
I wonder how comprehensive the CDC study was. I put into a jar the like crystaline rice like grains which had come out of my skin but over night it strangely dissolved. (It looked like a non living thing, just a substance so I dont think it climbed out... it must of dissolved to the air).
Some stats thou came out of the CDC Morgellon study of 115 people who had Morgellons.
"Persons who reported symptoms were most commonly
women (84%)
Caucasian (77%) and
between 45-64 years old (64% were in this age group).
In addition to reporting fibers or other foreign material in their skin, almost all study participants had what they referred to as disturbing skin sensations. Other symptoms commonly reported included
fatigue (70%)
sleep disturbance (60%)
muscle aches (71%)
joint pain (69%)
hair loss (63%), and
neurologic symptoms such as difficulty finding words (64%) and decreased memory (59%).
Other illnesses that had been previously diagnosed by a physician and were reported by patients included
hypertension (39%)
allergies (30%)
arthritis (32%)
infectious skin conditions such as scabies (20%), or
psychiatric illnesses including
?depression (32%)
?anxiety (19%) or
?attention deficit disorder (9%).
"
taroki
Senior Member
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- 132
- Location
- Ontario, Canada
OMG I have this too! For a very long time I noticed this "something crawling under the skin" feeling .... and just recently when I started taking Diatomaceous Earth for parasite cleansing, they returned big time after each dosage! I am totally creeped out and it bothers me sleeping as well (still have problems waking up suddenly and messed up sleep schedule).
I suffered the feeling of ants crawling up my legs soon after my wife purchased her new mobile phone (2000), and every time she turned it ON I felt this sensation. Now it's constant with burning and tingling sensations all over my exposed parts of my body. This happens intermittently ever since that first day and now 13 years later I now suffer in silence as the non-ionised radiation emitting from wireless computers, DECT phones, mobile phones and towers, and Wi Fi hotspots is the causation factor of this.
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- Lafayette, LA
I too have this man!! I feel something is crawling on my arms and legs. What might be the reason behind this type of sensation? Neurological disorder??
taroki
Senior Member
- Messages
- 132
- Location
- Ontario, Canada
I just found out I likely have Lyme disease. That would explain these crawling sensations. Do you guys have the symptoms also?
taroki
Senior Member
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- 132
- Location
- Ontario, Canada
Another thing I noticed that might be related. I do not feel comfortable when being touched for whatever reason. Even by my boyfriend. I have never been sexually abused so I don't know why I have always been like this.
Could it be related to these creepy crawly feelings? Do you guys with morgellons feel uncomfortable when being touched?
Could it be related to these creepy crawly feelings? Do you guys with morgellons feel uncomfortable when being touched?
Tiger Lily 813
Senior Member
- Messages
- 174
I have researched the heck out of this because it can get really intense. It can be neurological/nerve-related meaning, nothing is really there, or, it can be microscopic mites that you can't see (but there is something there). I have the latter because my immune system is malfunctioning right now. I can't tell if this is because maybe there is a mold situation (I am having a hard time figuring out if my apt has mold or not), it could be just the presence of lyme making my immune system weak, or possibly that I imbalanced myself trying to work on methylation with supplements, there are just so many things that cause this, but mold, lyme, serious infection/disease, MRSA, toxic exposure/build up are a few of the most common causes.
I know mine is at least in part demodex mites because I had their crust on my eyelashes before I knew what was going on. Demodex likes to mess with your hair follicles much to my dismay. Things that I take to discourage them include MSM sulfur, any herbs that are anti-fungal/anti-parasitic/anti-bacterial, staying alkaline, building up the immune system, anti-candida diet and alkaline diet. I have had success using low dose MMS in the past but it's not working as well at the moment. I've been going to far infrared saunas and am soon going to dabble with some energetic medicine...
I know mine is at least in part demodex mites because I had their crust on my eyelashes before I knew what was going on. Demodex likes to mess with your hair follicles much to my dismay. Things that I take to discourage them include MSM sulfur, any herbs that are anti-fungal/anti-parasitic/anti-bacterial, staying alkaline, building up the immune system, anti-candida diet and alkaline diet. I have had success using low dose MMS in the past but it's not working as well at the moment. I've been going to far infrared saunas and am soon going to dabble with some energetic medicine...
Leopardtail
Senior Member
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The most obvious and easiest thing to try for this is Vitamin B2 (Riboflavin) especially in it's R5P form. You can get it at iherb link here.
I tried "Source Naturals, Coenzymated B-2" which works for me.
I tried "Source Naturals, Coenzymated B-2" which works for me.
Tiger Lily 813
Senior Member
- Messages
- 174
@Leopardtail can you explain how much and how you knew to use that? I am suspecting- well I have a lot of overlapping issues right now- but I'm suspecting I overdid methylation from methyl B12/methylfolate and it won't slow down, thus masking me deficient in B2/B3, but I am taking extra of both, and not getting relief... I am not taking the methylfolate anymore though. Haven't for a couple months now.
Tiger Lily 813
Senior Member
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Biotin is another thing that is supposedly good for this, I'm taking that too.
Leopardtail
Senior Member
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@tigerlily a minimum of 25mg/day up to 100mg/day (in four doses). If you take B12 you always need to take B2 and B6 to prevent it causing deficiencies.
Too much B12 or P5P can cause a B2 defiency.
Too much B12 or P5P can cause a B2 defiency.
Tiger Lily 813
Senior Member
- Messages
- 174
Thanks! I'll split up the dosage & see if that helps!
- Messages
- 263
Hi acouchy, welcome to the forums!
There have been loads of threads about this subject here, which is of particular interest to me because neuropathic pain/allodynia/"the itching" is a central symptom for me, and I've found that tackling that symptom has led to significant improvements in all my other symptoms.
The most recent thread on the subject is here:
http://forums.phoenixrising.me/showthread.php?16188
One word of caution: although the sensation of "tiny bugs crawling all over you" is a very accurate description of what it felt like for me, particularly at onset (the sensation, I find, does vary, including also burning and stabbing pains, depending on my current state of sensitivity), this is probably not a wise description to mention to doctors - it might put them in mind of "delusional parasitosis", which is the standard way of dismissing this condition as psychosomatic.
My latest hypothesis for an explanation of this condition is damage to the recently-discovered tight junctions, which form a very thin protective layer beneath the skin, inside the gut (perhaps causing leaky gut) and in the blood-brain barrier (hence this damage might also explain digestive and cognitive impairments). Some viruses also subvert the receptors of tight junctions causing long-term damage to them, which might explain why many people get ME/CFS following a viral or bacterial infection.
My main practical advice is to identify the environmental factors which provoke or worsen your sensitivity, and to focus (perhaps necessarily in an extreme way) on eliminating them. For me, 100% high-quality cotton clothes are essential, I sleep on a leather sofa (haven't slept in a bed for years), and I use washing balls (no washing powders) and environmentally friendly washing up liquid and soaps (much experimentation was required with products like that).
Finally, I have noticed over the years that what I eat, and the state of my digestion, is closely linked with my overall sensitivity - if my gut is exposed to foods I'm sensitive to then my skin is more sensitised, and vice-versa. If you also have digestion issues, then this would probably be an important area to focus on. A careful elimination diet and close observation is probably essential to identify one's sensitivities; pretty much anything except steak, potatoes and peas can set me off, and wheat/gluten and eggs are particularly bad; I had to stick to a restricted diet and lots of supplementation (B12, Co-Q10, Omega-3, etc) for a long time, but I can now eat pretty much everything so long as I don't overdo it and return to my core diet when I become more sensitive.
So...that's what helped for me, and obviously (as always) your mileage will probably vary...but hopefully there's something there that helps you. I wish you the best of luck: it's a horribly frustrating form of pain, but in my experience at least, it can be reduced significantly with a lot of trial and error and careful observation of the triggers.
@Mark
Could you please link the thread on tight junctions of the skin?? The one posted d
- Messages
- 1
I have had this problem for some time...72 yrs.... breast cancer survivor for 15 yrs...restless leg syndrome...but the one thing I have found is biotin...I need to take 60,000 mcg. or 60 mg per day and have not had this problem since....I started taking it because I have been losing hair, too much...cut out the excess vitamin A. added iron(desicated liver tablets) after 3 months I am not losing hair, patches have filled in... the added bonus was the loss of these skin crawling symptoms. The biotin has corrected the severe problem I had with my eyes....very dry....eye doc said we had a problem as I had scratches on the retina and also bumps....now I don't need eye drops....also the severe dry mouth after the radiation is gone
roller
wiggle jiggle
- Messages
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i have had this creepy crawly skin problem for 50 years, as long as i can think back.
no itching really.
i also thought it is just in my mind or i may be hypersensitive or just a bit hysterical.
you will be told this as a child.
after intense research i found an doctor posting, that it is caused by blood clots.
i would still believe this, if i hadn't taken anti-helminth medication.
.
no itching really.
i also thought it is just in my mind or i may be hypersensitive or just a bit hysterical.
you will be told this as a child.
after intense research i found an doctor posting, that it is caused by blood clots.
i would still believe this, if i hadn't taken anti-helminth medication.
.
- Messages
- 12
Have any of you found a brilliant "quick fix" for this? I am so incredibly sleep deprived, I have two very small children which add to my sleepless nights and the later at night it gets the worse my skin crawling becomes. It is an all over body misery. crawling, itching. This began for me in 2013 and was severe for many months then became less frequent, just occurring every now and then, it is coming back strong and frequent again. It lasts all night long, through till morning and I feel it throughout the day but that is easier to cope with than it is when you need to fall asleep!