Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Bugs crawling sensation/formication

Discussion in 'Peripheral Neuropathy' started by Teddybear92, Apr 11, 2016.

  1. Teddybear92

    Teddybear92

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    Any ideas how to help this? I've had the sensation for years and my mother gets it too. It mostly is a sensation as if there really is bugs on the skin. I can literally feel different "weights" to them so I can feel as if it's an ant or fly sometimes. I look, nothing there. Sometimes it IS a piece of hair or a bug. I termed it "ghost flies" because the sensation is identical to when ive actually had flies on me.

    I started feeling it badly (all over) a few years ago. Once or twice going into our dusty spare room, which I still avoid to this day because even standing in the door way I'm attacked with itchiness all over my body. It's a feeling of bugs over me, but like "pinpricks"? Usually a wash calmed it. No bites on skin.
    once I was living alone and the bed was made and I was attacked with this feeling all over me. I couldn't control it. It was awful. Tried to sleep on the floor. Couldn't so later returned to bed and the feeling eventually faded and could sleep in the bed for the next few days ok.

    The feeling has returned the past few days it's all over me. It came from nowhere. It's so itchy. It seems worse at night. I haven't been bitten yet except two days ago I was having it terribly in a certain spot in my mother's room and discovered I was bitten multiple times there. (Bed bugs??). I haven't been bitten since. Seems to be messing with my mind. I've never been bitten by this sensation. I even feel it in my private area and in my anus and almost like a 'dancing" on my scalp. (Bug party lol)

    I admit I'm very sensitive to touch ive posted about in my last post. What could have caused this sudden sensation? It drives me crazy. I'm convinced it's nerve related!!! I have nerve pain as well.
     
    Last edited: Apr 11, 2016
  2. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    hi, ive had that to... i had what is termed morgellon's which on rare occassions seems to be another overlapping condition with me/cfs. my daughter used to become affected by it if she sat where i had been but the affectson her stopped when she sat elsewhere. mine was more active around 11-12 oclock at night.

    i cured my morgellon's by my own like long term treatment of things like daily 3-4hr baths of bicarb soda 250g and 1 kg salt, whatever morgellon's is, it hates that. i also spent a lot of time using antiparasite things in home eg burning white sage and smoking my house with it and worst affected areas.. using a lot of lavender oil etc

    most used to think this condition wasnt curable but several of us have managed with salt and bicarb baths long term to get rid of it.

    if it isnt morgellon's, it can be caused by a neurological problem
     
  3. Mark

    Mark Former CEO

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    Sofa, UK
    Hi Teddybear. I don't have time to post in as much length as I'd like right now, but what you are describing sounds very close indeed to what I have been suffering with for the last 20 years or so. Although quite a lot of people here describe itching, burning and other (apparent) neuropathies, I have only found one other person (interestingly, mother and son) whose description sounds like just the same thing that I experience. I will be keeping this thread open in my browser to remind me to contact you when I have more time, because I'd ideally like to have a chat with you about your experience.

    In the meantime though, being sensitive to the incredible level of pain and frustration and the impact on life that comes with this experience, I'll mention some very quick pointers based on my experience of what helps. I have recently started on gabapentin, prescribed for back pain, and it had a big impact on "the itching" (as I call it). As I understand it, this means that it is very probably a neuropathy rather than an immune reaction. Like you, I've found that warm baths help relieve the pain and offer at least a temporary means of escape.

    I find that the effects are cumulative: when the reaction is "switched on" it will build and build, slowly but surely, and takes a much longer time to gradually subside. I've recently been persuaded that my stress levels play an important role in increasing my sensitivity, but equally I am absolutely sure that it is provoked by triggers in the environment. Identifying those triggers and adopting a zero tolerance approach when the reaction is underway, have been my main methods of tackling this. What I want to compare notes with you about is history of onset and identification of triggers, and I think that conversation may work best in person, but in brief the triggers that I have identified have been sofas, pillows, soft furnishings etc, and from long observation and experimentation I'm pretty confident that flame retardants play a key role in this.

    I've also realised that from time to time I sweat something out (at night, usually, when I've had night sweats, which are sometimes quite extreme) which turns clothing or bedding "bad", and I've never recovered anything that has been "damaged" in this way: once something has been "infected" with my sweat, it remains a trigger even after washing. So all my solutions break down, eventually, and have to be replaced.

    However, quite recently I've also found that as far as sleeping goes, what my head and neck is in contact with is critical. I now wrap pillows up in a leather jacket, or some other "insulator" (plasticky or leathery materials seem to work best) and to my surprise I have found that the reaction can be switched on or off purely by what my head and neck are in contact with. That's a major step forward because I no longer spend hours and hours going through everything from bedding to clothing and experimenting one after another...focusing on my head and neck area nearly always seems to be enough these days. Although when I'm out and about, it's different; I have a very chemical-free environment at home, and lots of (quite expensive) flame retardant-free furniture etc; if I go out to the cinema, for example, as I do very occasionally, the reactions can be immediate and quite extreme. I take 'insulators' with me and drape them over everything I sit on, and I never sit on cushions even through my 'insulators'.

    That'll have to be all for now, but I wish you well and I do hope to find time to contact you and discuss further. I have a couple of hunches as to what causes this, but I want to ask you a few fairly open-ended questions to explore those theories of mine without introducing any extra confirmation bias...
     
    Mel9 likes this.
  4. Rrrr

    Rrrr Senior Member

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    so glad to find this thread of discussion. my sweet aunt is dealing with this exact same thing. i'm going to share it with her. (she has had chemical sensitivities in the past, but not ME/CFS.)

    the baths with baking soda and salt are a great idea, as is the idea to cover things with plastic to stop the body from reacting to flame retardant (nasty chemicals that should be banned).
     
  5. Sidney

    Sidney Senior Member

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    SF Bay Area, USA
    Baths have long been a necessity for me, I had Sjögren's before ( or still have it with) CFS. In the bath I always have lots of Epsom Salts, Vitamin C powder ( supposed to help counteract the horrible chloramine, which I thought was responsible for my constant back itching), organic water softener...I feel guilty about using so much water, but I am driven to it, often wake up in the middle of the night needing a bath. Sometimes, though less often, it has to be a cold bath, at least up to the waist.
    When in a crash, my hypersensitivity includes not just light and sound, but any touch on the skin ( massage, though, is good!). Hurts to brush my hair, my toes tingle ( this is where very cold water is a blessing) clothes are insanely irritating.
    I am glad to read this thread - I don't think I ever even bothered to mention all this to a doctor!
     

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