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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Itching driving me crazy!

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
The itching has since been diagnosed as Mast cell activation and I have a newer sofa - don't think it is that! mainly well controlled now unless I try a new drug.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
oh well bang goes my money @justy :) glad you've got it under control better. stay well.

so hard to identify what exactly is going on with us..
 

Geo

Messages
7
The itching has since been diagnosed as Mast cell activation and I have a newer sofa - don't think it is that! mainly well controlled now unless I try a new drug.
You see that is interesting because all of my "diagnosis" over the years revolve around one thing or another that can be connected to that as well:

Mast cell activation syndrome (MCAS) is a condition with signs and symptoms involving the skin, gastrointestinal, cardiovascular, respiratory, and neurologic systems. It can be classified into primary, secondary, and idiopathic.

I also agree that certain drugs and foods make a huge difference. I am sure getting a new couch, which is going to be done anyways, will not "cure" this condition either... I am hoping it is as simple as a bacteria which these new antibiotics for Filliculistus should kill off over the next month. We didn't always have this. We shouldn't have to just live with it either.
 

rebar

Senior Member
Messages
136
I sympathise,
I also at times have a problem with both itching and burning skin, upper body
including mouth, throat, and once my ears.
For me I believe it is a gut problem. My focus for about 6 months has been to address it. I believe
my shift in diet, eliminating many supplements, and trying to rebuild a healthy gut biom has helped.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
This mystery condition has been diagnoses as mites, allergies, drug withdrawal (I dabbled with some harder substances over the years but the itching has occurred with and without that as a factor), anxiety, psychosomatic, and just recently Folliculitis which I was prescribed antibiotics for, Doxycycline.

When I went to the pharmacy they noted my adverse reaction to Clindamycin and so I've been days now waiting for the Dermotologist to get back to me. It turns out these antibiotics are very different and I "shouldn't" have a reaction to it, which in the case of Clindamycin was hives all over a fever and the flushing of ALL my good bacteria in my body.

Come to think of it, the itchy might even be traceable back to the time I was prescribed Clindamycin for some dental work I had done... I have taken Xanax, Clariton, Benadryl, and all kinds of things to mask these symptoms just so I can sleep at night. They all work but don't work.

Eventually, usually, the itching just stops one day, typically after I buzz my body hair short, which is weird but the only thing that seems to work in the end. It could be partly that my hair touches my skin and I am having a reaction to that, but then that means I am allergic to my own hair??? It's a little far-fetched to me but at this point I almost will believe anything if it helps me cure it.

I do believe that this condition is evironmental to some degree. I know when the weather changes I get it. I also think it has something to do with allergies and food intake. I can't pinpoint what exactly affects it BUT there is something. I am going for a full allergy test soon as well as to see a gastroenterologist because I notice irregularity and odd digestive tract sensations at times. My right eye twitches almost constantly now as if in reaction to the itchiness, my eyes feel constantly itchy.

The "buggy feeling" sometimes manifests as the feeling that a bug has jumped into my ears and nose as well but nothing is ever there. I am hopeful that this prescription is what does the trick. I know I am not imagining this. I know that it is not a side effect of "anxiety" because at times I am NOT anxious at all and I get it. My apartment is VERY clean and there is not reason for this as far as anyone can tell.

It's mostly at bedtime or when I sit on our couch or at the computer. If I am out of the house and busy I don't feel it as much, somewhat but I think that is the red marks that it leaves. I have marks on my back, neck and buttocks and that is where is it primarily happening.

Scalp, face, eyebrows, ears, nose, forehead, collar area, chest, pretty much head to toe in a random maddening pattern.

People don't understand why I am tired and irritable but they would if they felt this like I do! No one else seems to ever have this either. Not my boyfriend who sits and sleeps in the same space as I do. I just know I am not crazy! Thanks to everyone here who shared their stories. It can't be all in our heads if there are so many of us!

Recently attended a lecture in regards to Small Fiber PolyNeuropathy (SFPN). One of the interesting things the speaker/researcher said, was SFPN can be caused by antibiotic drugs given for Urinary Tract Infections (UTI).

I was in one of the studies done by Dr. Oaklander, and have SFPN, not sure if that is why I often have a bug crawling on my skin sensation?!

GG
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I would love to get a brand new sofa - the second hand one I was given is too small and not comfortable, but a new one would mean off gassing of chemicals and that is not something I can do right now.

@Geo - I find I have a lot in common with the masto and MCAS folks, but the crucial thing is I also have chornic bacterial infections that are most likely causing the MCAS - meds for the MCAS help the itching but don't solev the underlying M.E unfortunately.
 

brenda

Senior Member
Messages
2,270
Location
UK
How are you defleaing? When l had a massive exposure to pesticide spray, one if the effects was intolerable itching if the skin.
 

slysaint

Senior Member
Messages
2,125
Possible problems, anti-biotics, candida, anti-hystamine can affect kidneys, some additives in supplements,dust mites, polyester.
But if you're using any kind of corticosteroid, eg pred or over the counter steroid cream please check out ITSAN.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
This last time has been the worst I have ever felt. It feels as if bugs are biting me very hard, moving air activates the sensation, heat and sweating makes my skin burn. I feel as if little microscopic knives are being stabbed into my skin at other times.

This mystery condition has been diagnoses as mites, allergies, drug withdrawal (I dabbled with some harder substances over the years but the itching has occurred with and without that as a factor), anxiety, psychosomatic, and just recently Folliculitis which I was prescribed antibiotics for, Doxycycline. When I went to the pharmacy they noted my adverse reaction to Clindamycin and so I've been days now waiting for the Dermotologist to get back to me. It turns out these antibiotics are very different and I "shouldn't" have a reaction to it, which in the case of Clindamycin was hives all over a fever and the flushing of ALL my good bacteria in my body. Come to think of it, the itchy might even be traceable back to the time I was prescribed Clindamycin for some dental work I had done... I have taken Xanax, Clariton, Benadryl, and all kinds of things to mask these symptoms just so I can sleep at night. They all work but don't work. Eventually, usually, the itching just stops one day, typically after I buzz my body hair short, which is weird but the only thing that seems to work in the end. It could be partly that my hair touches my skin and I am having a reaction to that, but then that means I am allergic to my own hair??? It's a little far-fetched to me but at this point I almost will believe anything if it helps me cure it.

I do believe that this condition is evironmental to some degree. I know when the weather changes I get it. I also think it has something to do with allergies and food intake. I can't pinpoint what exactly affects it BUT there is something. I am going for a full allergy test soon as well as to see a gastroenterologist because I notice irregularity and odd digestive tract sensations at times. My right eye twitches almost constantly now as if in reaction to the itchiness, my eyes feel constantly itchy. The "buggy feeling" sometimes manifests as the feeling that a bug has jumped into my ears and nose as well but nothing is ever there.
Several dittos there!

I sometimes get the feeling of something like an insect stinging or biting me, but only occasionally. As you describe, it is like something very small stabbing me, and makes me exclaim "OW!" and hastily uncover the place where it happened, but there is nothing to be seen - no insect and no mark on the skin.

I too have sometimes thought that I was allergic to my own hair, but in my case it seems to be mainly the base or root of the hair that causes me problems. I used to shave body hair (but don't need to now as it hardly grows at all, and/or falls out), and get itchy after shaving. Also, after cutting my hair, I find contact with the hair I have cut off very irritating.

I also get a feeling of something moving in my ear sometimes. I think it is just skin or dried ear wax peeling off. But once, when I was a young teenager, I was sure I had an insect moving in my ear. It was quite scary. I was holidaying on a farm, overlooking the farmyard where there were swarms of insects at times. The feeling lasted quite a long time - hours? Then eventually it stopped, and I presumed that the insect had died.

When I get twitching eyes, I think that it is actually a neuromuscular problem due to mineral/electrolyte deficiency arising from solute diuresis.
 

Gingergrrl

Senior Member
Messages
16,171
@Geo - I find I have a lot in common with the masto and MCAS folks, but the crucial thing is I also have chornic bacterial infections that are most likely causing the MCAS - meds for the MCAS help the itching but don't solev the underlying M.E unfortunately.

I agree with you @justy and in my case it was mold vs. Lyme but I am now learning that in addition to aggressively treating the MCAS (which I had to do in order to eat without anaphylaxis) that I have to treat the underlying mycotoxin exposure in order to get better. It's a long process that I intend to post about in a few months (assuming it continues to go well) and am hoping you will be able to treat the Lyme soon.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Several dittos there!

I sometimes get the feeling of something like an insect stinging or biting me, but only occasionally. As you describe, it is like something very small stabbing me, and makes me exclaim "OW!" and hastily uncover the place where it happened, but there is nothing to be seen - no insect and no mark on the skin.

I too have sometimes thought that I was allergic to my own hair, but in my case it seems to be mainly the base or root of the hair that causes me problems. I used to shave body hair (but don't need to now as it hardly grows at all, and/or falls out), and get itchy after shaving. Also, after cutting my hair, I find contact with the hair I have cut off very irritating.

I also get a feeling of something moving in my ear sometimes. I think it is just skin or dried ear wax peeling off. But once, when I was a young teenager, I was sure I had an insect moving in my ear. It was quite scary. I was holidaying on a farm, overlooking the farmyard where there were swarms of insects at times. The feeling lasted quite a long time - hours? Then eventually it stopped, and I presumed that the insect had died.

When I get twitching eyes, I think that it is actually a neuromuscular problem due to mineral/electrolyte deficiency arising from solute diuresis.
I used to itch from shaving my legs. I think it's pretty common.

I have itchy ears. A couple of times I found a cat hair in there. My cat often sleeps near my head, so it's not surprising.
 
Messages
31
Location
Scotland
Hi Justy. I was told my itching is physical urticaria. Comes and goes but responds to antihistamines. Usually I start feeling itchy in the evenings and especially at bedtime. I've noticed changes in temperature and humidity seem to be a trigger e.g. changing clothes, getting into bed. Rightly or wrongly. I put this into the 'sensitive to everything' category of having ME/ CFS.

Are you taking anything for your itchiness now?
 

lansbergen

Senior Member
Messages
2,512
I have been thinking for a long time the itching I have is part of the healing process. Now I am sure.

Something comes out making a tiny wound and causes itching without a rash.
 
Messages
46
I had severe itching as well, but it vanished when I started taking lower doses B12. Not sure if it was related, but higher doses B12 can cause itching.
I found out that b6 was making my itching worse probably by speeding up the CBS enzyme and creating sulfites.
Less b6 = less itching
More molybdenum (sulfite oxidase cofactor) = less itching
Less dietary sulfur = less itching
 

Geo

Messages
7
I started using color safe bleach, Purex 2, for my sheets and towels, and it seems to have helped considerably so far. Wasn't properly disinfecting those items I think with regular washing powder.
 

KitCat

be yourself. everyone else is already taken.
Messages
222
Location
US
Are you on any meds? I was on pain killers for a while and didn't realize they were causing me to itch.

Also I have over the years developed a severe flea allergy. If I get a bite I will feel itchy all over, not just where the bite is.

If I have itching that is a reaction to something on my skin, I've had great results with a new product called Rash Block which is made out of silver. This is for a localized itch, wouldn't work full body. Also, some people have great success with manuka honey for itchy rashes.
 

Geo

Messages
7
Are you on any meds? I was on pain killers for a while and didn't realize they were causing me to itch.

Also I have over the years developed a severe flea allergy. If I get a bite I will feel itchy all over, not just where the bite is.

If I have itching that is a reaction to something on my skin, I've had great results with a new product called Rash Block which is made out of silver. This is for a localized itch, wouldn't work full body. Also, some people have great success with manuka honey for itchy rashes.


Actually, traced it back to just not disinfecting my bed sheets and towels with color safe bleach. I think it was the towels mostly, never really thought about it but it makes sense I guess. Since I started using the Purex2 on them I have had minimal issues. A few times it resurfaced but with stuff that I hadn't disinfected yet. It's the weirdest thing to be honest and I will see over the summer what happens of course, which could be a different story as warmer weather, when I sweat, seems to be a huge trigger.
 

slysaint

Senior Member
Messages
2,125
Diluted organic apple cider vinegar is my go to for anything that itches. Some people put a cup full in their bath water. Try looking up miliaria rubra aka heat rash (there is more to it than you might think) also keratosis pilaris. Yeast overgrowth also. Additives to supplements, all antibiotics. Also be aware that anti-hystamine affect kidney function which can lead to further problems(dry skin being one).
It's a minefield! Then also we have the problem of being ME sufferers.........so nothing quite works as it should.