Feeling of bugs crawling/flying ON my skin

Post your questions about BFS here

Moderators: JohnV, Arron, garym

Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 5:49 am

Hi all!

I'm on Doxycyline in case of chronic Lyme (had a tick bite before all sympomts started and one test pathological, but not the "official" tests, a test called CD57 that shows my immune system is very supressed - can have many causes inkl Lyme).
The latest weeks I've had less pain, a little reduction in fasciculations, the burning scalp is better, but my main problem, the paresthesias, have gotten even worse or at least changed. I seldom have the classical "pins and needles" but more and more the feeling of thousands of small bugs crawling/jumping and like FLYING ON my skin, not IN my skin, but on the surface if you understand...hard to explain. This happens mostly in arms and legs, but can come over my entire body. When I search the net in Norwegian I get 0 answers on this, but when I search google in English I get MANY sites and totally desperate people describing this phenomena. They discuss and are often convinced that they actually have bugs on them, that bite and crawl og creep...and fly..They try everything, like all kind of different insect sprays and washing routines with antibacterial soap etc. They try to convince their doctors but are are told it's in their mind...The word for this condition is "FORMICATION". http://en.wikipedia.org/wiki/Formication
I've never read about that or heard about that before yesterday when I googled "bugs crawling ON my skin", but these people describe it just like I have it. It's like torture...so distracting and totally unnormal. I get so afraid I can get these feelings even worse because some people are totally destroyed of it and mine is getting worse:(
I've asked several times on this forum about other people not beiing able to wear pants/jeans next to the skin because this makes it so much worse, but have got very few anwers. But when I read posts about "formication" they descripe it precisely. But they don't have the other symptoms I have it seems.
Do you think it can be possible that I actually have bugs in/on my skin, in the clothes, in the bed lines etc???? Shouldn't the other family members have got it then? Or is it the nerves?? in the posts about formication they discuss so many advises and they don't agree and I don't want to go into something like that if it is totally a waste of time and energy trying to get rid of "bugs" if it is actually the nerves..but I feel it ON my skin...
Can some of you relate to my feeling and do you have some thoughts about this problem I really hope you'll anwer!

Hugs to all
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Yuliasir on March 22nd, 2013, 6:26 am

My dear, it is definitely NOT bugs.
formication is for example well known symptome of certain conditions mostly related to sensory neurons disorders. it is well known and often happens in people who take certain narco drugs because their sensory fields in the brain are severely affected by chemicals they do ingest (so in fact they have sensory hallucinations, chemically induced). it also happens in alcoholics on late stages of disease mostly because same organic brain damage they got from alco abuse (they feel like something evil is touching theri skin). it may also happen in people with other organic changes in the brain affecting sensory fields (like trauma or stroke), but your MRI seems to be with no changes since august as far as I remember.

People with various hardly explainable skin issues are common among those who have labile nervous system or who are prone to autosuggestion. those people can have various issues starting from constant incurable dermatitis, stygmates (in case they are passionate followers of any religion) and even such exotic disease as 'margellon disease" when people find some 'fibers' on their bodies (we all have a hell of natural/syntethic fibers on us) and claim that is a source of skin disease, wile in fact they have psychogenic itching and dermatitis.

I can not say for sure of course if your sensory issues are caused by chemicals (practically Doxy), some damage caused to sensory fields by Lyme tick (I do not know actually if Lyme bite might cause any changes in the brain, for me it is too far systemic for a protozoa that the tick is injecting in our body) or whatever else. But it is a sensory issue and not real bug, do not let that thought obsess you please. it is a wrong way, believe me, it leads to worse depth...

sometimes formication is also a local effect due to the fact that either your body produces too much substanceas to irritate your skin sensory neurons or they for some reason becase more sensitive to common neuromediators. For example, so called acetylcholine urticaria is very common among our fellowship, and this is usually a non-specific skin reaction on extra acethylcholine released from so called fat cells in our skin. Nobody knows why it happens (sometimes it happens in cold weather, sometimes in hot, sometimes we have to sweat to get it and sometimes it just comes out of the blue). usually it is revealed as sudden edemas in hands or body, and sometimes in many bloody itchy hives making a complete ugly fields on the skin, rising and going out suddenly. I know it is not what you experience but it is just an example of what can happen to skin of people affected with our strange syndrome.

For me it looks like pure sensory neuropathy but regardles sthe cause it HAS to be treated and I am pretty surprised on your norvegian doctors stuffing you wih Doxycycline and missing your obvious sensory issues (except that one who prescribed a tegretol).
User avatar
Yuliasir
Saint
Saint
 
Posts: 2541
Joined: March 3rd, 2012, 1:42 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 12:47 pm

Thank you. I understand you know a lot, but it is sad that I dont' understand better what you write (partly due to my bad English and partly because of medical terms). I'm EXTREMELY scared right now, and it is BECAUSE of this bug crawling sensation and not a cause, that I absolutely sure of. I don't know how much I can take. Do you mean that it probably is a damage in my brain even if MRI was normal? Or that I have a system desease? It scares me that you write that it HAS to be treated. The neuros have not found out what is wrong with me, and actually sendt me to a talk with a psychiatrist at "psychosomatic departement" that just asked a lot of questions from standard schemas, and I said no to nearly all questions, except "have you gone to the doctors several times for symptoms that they have not find out of?" "are you still afraid you have a serious desease"?, "do you think a lot of your symptoms and do they scare you"? I said yes to those questions. and the psychiatrist wrote that "IF the neurologist don't find the reason for her symptoms, THAN it's probably health anxiety." I find this very unfair. As if the neuros know ALL. I know a lot about CFS because a close fam member have it, it's not psychosomatic even if the doctors don't know what is wrong. It's the same thing with Lyme, there are no 100 % tests for it. Of course I'm scared, BECAUSE of my symptoms. I was in perfect health before a very intens stomach infection in Jan last year, that was the start of all of my symtpoms. And the sensory stuff are definately getting worse. This bug crawling feeling and my skin is burning on several areas, feels ice cold and wet on other areas pluss all the other absurd paresthesias. And I didn't get e normal result on the termo test for thin fiber neuropathy, but still they didn't do more testing. I have tried both Neurontin and Lyrica before, and the third option is Tegretol, but had to stop because of bad vaskulitis (very uncommon bieffect). The neurologist I talked to on phone when I got vaskulitis, said he would give me the advise to stay away from all such kind of meds because I got this bieffect, and I have had normal EMG/NCT, SEP and MRI (not any changes since aug). So he have no idea what is wrong and no advises what to do. The only hope I have is that this is Lyme and that doxy will help me. But I actually don't think it is Lyme. I never got a rash after the bite, the standard tests are negative, and I got sick after a stomach infection. So you don't think it is Lyme either...I have found stories of bugs in the skin in patients that think they have Lyme..but not many..When you say that it HAS to be treated, then you mean that I should have even more test to find out what the cause is so to know what to treat??? How can this be treated if no one knows what it is? I'm sorry I write so bad, I'm just so afraid of this - it ruins my life, and I have a 3 year old kid that needs me.
Ok, I'll try accept it is not real bugs. I don't have things comming out of my skin. But I know something is seriously wrong with my nerves and I'd do anything to find out and get help, but no one whats to do anything more to find out - I was told all relevant testing have been done and they just don't know.
I really need someone to tell me they've had these symptoms and that they passed....................please write back to me. hugs
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 12:56 pm

I'm quite sure I have small fiber neuropathy, everything I read about this fits.
I'm going to a doctor at the Norwegian Lyme Senter i the mid of April and I'll ask him if it is possible to get all this horrible sensory stuff from chronic Lyme.
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 1:08 pm

I agree with you about sensory neuropathy. But do you have any suggestions or knowledge about what kind of treatment I can try? When tried Neurontin, Lyrica og Tegretol..what else is there to try?? My GP have no idea..he ahve never heard of a patient with such symptoms, and the neuro had no suggestions either..:( Said I probably just will get bad bieffects. I'm willing to try absolutely everything. My GP said I could try to take 30 mg of Remeron in stead of 15 mg as I have taken since April for sleep..I took 1.5 tabl before bed time one day this week, and got a little more "sleepy" but also gave me horrible burning in the skin on my arm, just like when I tried two weeks of escitalopram/cipralex..and I can not take more symptoms, so have not taken more than 15 mg Remeron. Is it possible that the horrible sensory stuff is because of 15 mg Remeron?? My GP doesn't think so at all and I don't think so either becuase I also had parethesias before I started on Remeron..but it would have been an enormous relief if it turned out that 15 mg Remeron and 10 mg Sarotex at bed time was the cause of the symptoms I have now.. Don't think so because than the paresthesias should'nt have changed form lately, should they? If one have sideeffects from meds, aren't they the same all time?? God, I wish I had anwers and help!!
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Yuliasir on March 22nd, 2013, 1:23 pm

no no my dear i do not think your brain is damaged - otherwise it would be seen on MRI and I know from your posts that your MRI had no changes from last time till now -which is good and means therer is no ongoing destructive process in your brains, thanks God.

I just tried to say that there are three main reasons for having formication: poisoning by sertain chemicals or drugs (central disease), small fiber neuropathy (local one) and overall hyperexcitability (more or less systemic disease with unknown routes however). Most probably your case is a combination of two last on my point of view however I am not a doctor as you know. But I think we might exclude poisoning :)

Saying it HAS to be treated I meant that there should be a treatment for it, and I meant that your doctors need to pay more attention to your sufferings...

as for treatment, I think you need a good professional advice - if therer is no specialists in your country than maybe abroad. I can assume the treatment includes vitamines, some meds with sedative action to make nerves less irritable, and maybe something else, and I also could assume it is a long term story. it is so sad to read about your symptomes and I am really full of sympathy because I can imagine how it really drives you crazy...
User avatar
Yuliasir
Saint
Saint
 
Posts: 2541
Joined: March 3rd, 2012, 1:42 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 4:00 pm

Thanks a lot for caring. I agree with you. I feel like the doctors have given up, actually it's not just what i feel, they have said sorry but we don't know. And they have no suggestions either as I've tried different kind of meds with no effect. Only side effect s..now I've read on som boards, googled crawling sensation and lyme, and I find quite a lot of people having it but they also often do not have Lyme for sure..just maybe, like me.. I only pray that antibiotics will help me. I want to try intravenous antibiotics because I'm so desperate...really hope the doctor at the lyme senter have a clear opinion on whatto donow.. i know regular official doctors dont agree with the tests or treatment this private clinic use, so it's hard being "in the middel"... but I know something is very wrong and the official doctors have nothing to offer..yes, If I just knew a doctor or clinic abroad that had expertise on my symptoms...but I don't.. feel like people on this board are not getting help from their doctors in any country..if anyone here have advices for me, please tell me.
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Scandinavian girl on March 22nd, 2013, 4:08 pm

When I read about formication it's just as I feel it and I get so scared when reading experts saying it is a hallusination. Am I turning seriously mentally ill??? ; ( won't dear to tell doctors if they can conclude like that; (
Scandinavian girl
Hero
Hero
 
Posts: 344
Joined: May 31st, 2012, 1:29 pm

Re: Feeling of bugs crawling/flying ON my skin

Postby Yuliasir on March 23rd, 2013, 2:03 am

do not worry about hallucinations. Practically first of all I am not so much an expert :) and second - hallucinations in their classical form always mean changes in the way how the brain process information and, more important - what kind of info our brain processes wronlgly. For example, it is known that people in schizophrenia can sometimes process physiological sounds (blood flow, peristaltics) as 'voices', and shadows like persons etc./ making them part of hallucinatory activity. For me it seems like you have just hypersensitive sensory nerves. And moreover, unti you have enough criticism to condider your symptomes as not real bugs but just a kind of paresthesia, it would not take your mind over. I am sure you are not going mentally ill but true is that you are extremely tired fighting all those sensory issues and having no good rest - not physically, nor mentally. tiredness alters our ability to process info and lowers criticality too that is why I practically wrote to you saying you should not think those are real bugs...

I can tell you, if that would be reassuring, that once in my life I had hallucinations caused by extreme tiredness and nervous state (before my wedding). I was so nervous, I lost about 8 kilos of weight, and I was afraid of what my mom would say about my choices etc. and the night before the wedding I was lying in the bed with my next day legal husband, and I heard clearly that my mom and my dad are discussing me in the neighbour room. the room was empty I knew it for sure. But it was dark, scary night, and I had heard their voices clearly, I heard their intonations - concerned, sad, worried, but I can not detect a word - what exactly do they say? I told to my husband that I hear voices in my head, and I was so scared, crying, and he told me - dear, it is just fears, do not worry, you are ok just so much tired. And I managed to get asleep, and married my husband next day and never had any voice visitors again. Much later I was told by knowlegeable person that this is a common thing in tired and nervous people.

wish you so much to get good results in your non-official clinics.
User avatar
Yuliasir
Saint
Saint
 
Posts: 2541
Joined: March 3rd, 2012, 1:42 pm

Re: Feeling of bugs crawling/flying ON my skin

Sponsor

Sponsor
 


Return to Questions About BFS

Who is online

Users browsing this forum: Yahoo [Bot] and 3 guests