Does anyone else feel really uncomfortable, mentally and or physically receiving "touch" such as hugs or other expressions of affection? Is it difficult to cope with?
It's very hard to explain, but when I feel sick, one my symptoms appears to be an "avoidance" of affection. It seems to make my symptoms worse when I'm forced to be affectionate because of cultural standard (Hugging upon a guest leaving your home etc).
I used to have a lot of pain on my skin earlier in the illness. Clothing and touch of any kind made me very uncomfortable, but it doesn't feel to me that the avoidance of affection is entirely just a physical nerve issue, it feels more like psychiatric, or...negative impulse type of thing.
Posted by lou (Member # 81) on :
Maybe your emotions are tapped out, and this requires more than you have.
Posted by randibear (Member # 11290) on :
yes, i feel very uncomfortable being touched. noises and bright lights are very painful.
i'd just rather be alone. that way i can control my environment.
Posted by Keebler (Member # 12673) on :
- Well, pain is certainly one consideration but I think it goes far beyond that for most of us. You know that lyme can induce autism. And I think that is true for adults, too, to a certain degree.
I think it's the autistic &/or vestibular complications that often go with lyme. Really. Our senses are just overloaded. Touch is just too much for our nerve cells in our skin and all through the nerve pathways, our nerve control board in the brain -- our inner ear control board, too, can go tilt with the slightest input overload.
I have to keep my hair short as the touch of hair on my face and neck is just more than I can handle. Clothing, too, must be tag-free and very soft 100% cotton. Any pilling and it is so irritating.
** BARTONELLA ?
One of the last two speakers at the Friday sessions of the recent ILADS conference in Oct. spoke to these sensory symptoms of needing the softest of clothing, with no tags, as clues to BARTONELLA.
I would also think of heavy metals.
Nerve damage, vestibular damage could also be a reason.
Inflammation of nerves is likely. And my guess is that the neck is also very much involved.
There may be some treatments for lyme induced autism that can help those who have certain elements of those symptoms / reactions. B-6, especially.
As for the cultural expectation of greeting and departing hugs, be ready to keep your distance and explain that you
"have some nerve inflammation gong on in my neck and arms - sorry - just can't even hug."
If this is comfortable for you, put both hands over your heart to display a feeling of affection to them while signally your need to keep your arms all to yourself.
Instead of the touch, if you can do so genuinely, focus your eyes on theirs and bring up a nice smile. Ask about their well being or any new aspects of their life - or comment on how good it was to share a moment with them. That will provide a different kind of intimacy. But, if you can't do that, don't even try. You just have to be real. And you can excuse yourself if you are not up to company. -
[ 11-17-2010, 01:48 PM: Message edited by: Keebler ]
Posted by Hoosiers51 (Member # 15759) on :
I get that when either my irritability or depression flares. Even though it does feel "sort of" physical, I think it is psychological....like you have your personal space, and you don't want anyone in it.
That's how it is for me, at least. So I think it's a symptom of depression. One of the many quirky symptoms.
Posted by Keebler (Member # 12673) on :
. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet ``refused to follow orders.''
Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.
At this point, Sarah's massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.
``In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.
I knew I was walking incorrectly, but I didn't know how to correct the problem--now that I'm walking better, I have more stamina,'' she explains. . . . -
Posted by Keebler (Member # 12673) on :
- Mike,
I know you've seen this thread before but, for new readers who may have some vestibular & neurological stressors going on.
ANY of these symptoms can make the "intrusion" of a hug toss us off balance. Also note the cognitive involvement - creating a real neuro-sensory earthquake. -------------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posted by Keebler (Member # 12673) on :
. . . impairment of concentration, inattention, easy confusion or disorientation . . . .
**�. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged.�**
Low threshold exasperation in unexpected circumstances is not uncommon. . . .
. . . With a loss of voluntary and subconscious editorial control of emotions and expression in word or behavior, a patient with encephalopathy gives the general impression of being erratic, inappropriate, if not dysfunctional. . . . -
Posted by Misfit (Member # 26270) on :
It actually comes and goes for me. There are times when I can't stand my H's touch on my arm. I've told him it's actually painful. Other times I'm fine with it.
He will absentmindedly play with my hair, and there are times when I love it and times when it feels as though my hair is being yanked out by the handful.
I don't know why there are times when I can tolerate touch, and others when I can't. But that's just the way it is.
Posted by RESOLVED. (Member # 24991) on :
That's exactly the same for me. Sometimes, I'm ok with touch, others not. The comfort found here on Lymenet is immeasurable. I thought this 'touch thing' was my being a little wacky.
I'm trying to explain it away and ignore it. So it's REAL!!?? It just seems so much easier to handle some of this stuff when you realize that it's the disease(s) and your're not the only one experiencing something.
Posted by Keebler (Member # 12673) on :
- It hinges so much on NMDA neuro-excitability from toxic infections and from nerve damage, too, for brain/ear and skin systems.
The skin is a huge detox system. When the liver is overwhelmed, the skin will be so, too. -
Posted by Keebler (Member # 12673) on :
- And, beyond the technical considerations, sometimes, we may be responding to emotional cues. Too often, a hug can entail hidden agendas from both parties. THAT can be a huge consideration.
The condescending hug is the worst. But so are hugs that are codependent. And this aspect could fill books. Oh, wait - it has.
Hugs are emotionally complex. Our nervous systems have enough to handle without all the sensory stimulation of a hug.
Our emotional selves, too, just can't always handle sorting out all the nuances and expectations.
And, there have been times when I have collapsed into a hug because I was just so tired or dizzy that I could not hold myself up one more second. And THAT caused some mixed signals more than once, let me tell you. -
Posted by Munch (Member # 11323) on :
I noticed this was worse for me before I got on HGH or human growth hormone. When my IGF-1 is low I feel less social.
"Psychological Symptoms
shyness withdrawal from others nervousness or anxiety problem with sleep quality decreased social contact sadness or depression feelings of hopelessness"
I am the same way 99% of the time Blue. right now my body is in too much pain to be touched.
But, other times....it is just too much drain on the system...the pail of water is usually on the empty side...splashing out some more is too much
Posted by kam (Member # 3410) on :
I also need to wear soft clothing. Haven't been able to wear necklaces or earrings or rings since this hit in 2001 either.
Posted by AlanaSuzanne (Member # 25882) on :
I am a huggy-kissy person especially with kids.
When my little one is in pain all I want to do is hold her to give her comfort. I was told that there are sensory issues that cause people to not want the physical contact which I had never realized.
So now I ask her if she wants to snuggle. Most of the time she does, but when she doesn't I don't push. I ask her if she wants me to hold her hand. 99% of the time she does. That alone seems to comfort her. And it comforts me too, just holding her hand and knowing that she knows I'm up for a good hug whenever she needs one.
Posted by Keebler (Member # 12673) on :
- AlanaSuzanne,
I think most of us with sensory overload would LOVE to be able to tolerate touch. Massage actually can be wonderful and calming but that is a lot different than having the constant irritation of tag on the back of a shirt or a necklace.
I'm glad your little girl usually likes the hand holding.
kam,
I also can't wear any jewelry at all. Very odd. Interesting to hear of someone else with the same tendency due to sensory overload. -
Posted by AlanaSuzanne (Member # 25882) on :
Keebler, I've never thought of myself personally as one who reacts negatively to touch. But when you mentioned massage, it got me thinking.
I had the opportunity several years back to get a couple of massages. I found it relaxing when my shoulders and back were massaged, but when it came to my lower back, legs, feet, face and head I had to hold up a stop sign. I initially thought I reacted this way because I was self-conscious about my thighs, but it was really because I found that having someone rubbing my lower back, legs, feet, face and head was annoying and painful.
And come to think of it, the one time I was treated to a facial, it was torturous. Some woman in a white coat stood over me misting my face like she was trying to water the desert. There was no pleasure in it at all. And my skin didn't look or feel any better.
I know a couple of girls who can't tolerate the sensation of tags on clothing against their skin and are hypersensitive to how fabrics feel on them and clothing that is too itchy/too tight/too loose/too something.
Posted by apljack (Member # 14233) on :
Yes, I know how you feel. I remember how I preferred to be in a room by myself. I needed to get away from everyone. The doctor thought I was depressed. Possibly, makes sense. But, why did touching make me cringe? That couldn't be depression. The cringe has only recently disappeared with the babesia treatment.
Also, the clothes thing I can totally relate to. I can only wear cotton, anything else drives me crazy. Another "weird" thing for me was I could not wear red. If I did, it almost felt itchy, even if it was cotton. Now it's not a problem. May even wear my college sweatshirt today which is RED.
Have a nice Thanksgiving and know that this doesn't last forever.
Posted by unsure445 (Member # 15962) on :
I notice I don't feel anything when I hug people (and I want to!!!) accept for my kids...strange. I have been kind of depressed lately so maybe its from that.
And after a certain amount of time interacting with people I need to be alone, even if its only for a few minutes it seems to help.
Maybe we use so much of our energy in holding ourselves together that its hard to give in that way to someone else...
Posted by METALLlC BLUE (Member # 6628) on :
That could be part of it unsure. It feels that way a little to me. I rarely run out of mental resources, but when it comes to intimacy I'm awful. I'm hyper self centered because I horde my internal resources. I only give what I can afford to in terms of affection, and it's often overwhelming because I have to share it between a number of people. If they don't get their "minimal tolerance quota" met, they get very upset with me to the point where it significantly worsens my symptoms because of the barage of frustration and exhausting explanations I have to repeatedly state over and over: i.e. I'm exhausted, I don't have anything to give because I'm burned out and overwhelmed.
Posted by sixgoofykids (Member # 11141) on :
The thing about affection is, it multiplies when you give it. So, in terms of your feeling selfish giving it because you have so many to share it with, just remember, you will have more them more you share. Think of a candle .... sharing the flame takes nothing from the original flame, it just spreads more and more light.
Now, if you're talking about expectations others have for you to DO things for them, that's a different thing altogether.
As far as touching, that was one of the most difficult things for my family to deal with. It hurt for them to touch me, so they couldn't. I could touch them, but they could not touch me.
Have you checked out whether KPU is an issue? Becoming more and more a loner type is a symptom of KPU. I know it was a BIG issue for me.
Posted by onbam (Member # 23758) on :
I now abstain from all intimate contact (as well as sharing food, etc.) , but this is to protect people.