posted
Well not totally because I still have a job, but.. The best I feel is around the house but it's like the instant I leave the door to do so much as hit the grocery store things start churning and going downhill fast. It makes going to the store seem like an epic journey now, this is ridiculous.
Is it stimulus outside? what is this?
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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feelfit
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posted
Ha! I wonder the same thing Topper. Yesterday I cut and weed whacked the whole lawn 1/4 acre, push mower. Then I used the leaf blower to clean up.
Lots of noise with this equipment, but I felt really good while doing this.......Now, put me in Wal-Mart or a Grocery and it gets nuts.
I feel weak, woozy, and often it feels unlikely that I will make it to the door to go sit in the car......where I ALWAYS end up.....
I don't know if it is the lighting, all of the different noises, or what, but it makes me non-functional.
CNS overload?
Posts: 3975 | From usa | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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Lights, noise, petroleum and scented products being blasted at us everywhere. Grocery stores are the worst and, I think, no lyme patient should set foot in one as the total assault pulls down healing so very far.
Add to that the adrenal dysfunction and energy output.
I find I can only tolerate places out of doors - away from vehicles of ally types - away from cell phones or check out line beeps and flashes. Parks with good trails and benches that are not in the bushes, etc. Regardless of one's faith, various churches or synagogues may be places one can enjoy a meditative time - or a library (but watch out for those humming fluorescent lights).
While much of this is in regard to overloaded toxins, the damage on the nervous system(s), the heart and the endocrine system all make perfect sense.
Add to that vestibular symptoms that many lyme patients experience and the picture becomes clearer. ( http://www.vestibular.org/symptoms )
Some things that can help, in addition to treating infection(s), are the support supplements, good rest, excellent self-care. Beyond that, it just takes time and finding the places where you do best in and avoiding the others.
Tai Chi or Qi Gong are gentle exercises that can help. Being around nature is excellent for healing and for as much as we want to be safe in nature, there are ways to still be in nature and be safe.
People heal better if they have a tree nearby to look at. Really.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Home is a mostly controlled environment.
Places such as outdoors and supermarkets aren't.
I think the stimulus including radiant temperature,
Moving more, added sensory stimulation, etc.
Make our systems try to work harder.
Harder than they are capable of.
I know at home I can control the volume, how far I have to walk, temperature, etc.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
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posted
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You are lucky you have a home that works. I have to spend most of my time in a closet due to all the noise around my complex/neighborhood. Even in here, I get all the lawn machinery noise and vibrations.
Late nights are the best, though, when everyone is quiet. Ahhhh.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Going to large stores has bothered me so much since becoming ill. I end up dizzy, confused and feeling off balance and just plain sick. I will be fine to begin with and can sometimes stay for 30 minutes and then it hits out of nowhere.
This also happens at large family functions. I start out okay, but after a while with everyone talking at once, my mind just shuts down.
The problem is no one understands this, even my very supportive husband. He thinks it is anxiety, but I KNOW it is not. It definetly has something to do with CNS stimulation.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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LisaS
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posted
Ditto what feelfit wrote. I also think it has to do with knowing when you're at home, if you do get sick, you can lay down. I panic when I know I have to do something ahead of time. The stress makes me even sicker.
When you're at home and get sick, you can lay down and you're not in front of other people, when you're out, it's the worry of, Oh my God, I'm going to faint in front of people or go crazy or whatever happens to you in the moment, it's an out of control feeling.
I am the same way, especially with yardwork, I can be out all day sometimes, then my family will say oh good, you're having a good day, let's run to Walmart, then the whole anxiety starts. Plus, when you're out you have to keep up a pace with everyone, at home or in the yard you can go at your own speed.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Interesting. For years I just thought I was having panic attacks because of being in stores. But some stores are worse for others for me. I'm too afraid to drive to a store by myself because of how I might feel.
posted
Ocean, I know what you mean about some stores being worse than others! K-Mart is the worst for me. I get dizzy every time I enter that store. It can't have anything to do with crowds, because that place is always empty.
My home also makes me sick. I'm trying to find a new place. We live by a power line, a cell phone tower, and I have mold. Who knows, maybe they cooked crystal meth in my home, too.
Church also is not a good place for me. I think it's the lighting. I always get more dizzy there, and faint.
I feel the best when I get out doors... something I rarely have the energy to do. I need to ask my husband to encourage me to do so.
We went to the lake on Sunday, and at first I felt awful. I cried because I couldn't make it up a hill without stopping a lot to catch my breath and rest my legs. I used to love to hike hills. But after a while, I was chasing my rotten, run-away dog and feeling healthier.
And I feel good at my mom's house.
-------------------- Never doubt in darkness what the daylight proves to you. Posts: 418 | From Utah | Registered: Apr 2009
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Keebler
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posted
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If anyone does not understand, let them read this. Although there are many reasons for what happens, stress on the CNS, adrenal systems, multiple chemical reactions, cardiac stress, etc. that all go along with lyme . . .
Many lyme patients have the same vestibular symptoms such as on the list below.
Regardless of all the other ways lyme can create havoc, it's easier to just offer "vestibular symptoms" as an explanation for those who don't get the complexities of lyme:
Energy-saving light bulbs could trigger migraines, say campaigners.
The Migraine Action Association says members have told them how fluorescent bulbs have led to attacks. . . .
Last year the charity Epilepsy Action reported that a small number of people with the illness could have seizures triggered by low-energy bulbs. . . . .
`` . . .But getting us to change out our incandescent light bulbs for some irritating fluorescent ones isn't going to save the world. All it's going to do is make us more agitated and jumpy and feeling like once we get home we haven't really left the office. . . .''
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Tincup, thanks for reminding me that I am not alone. After many many months... yesterday I was able to walk outside a mall and look at the windows. Today I am totally fatigued and cannot get up. Still hoping for a better tomorrow.
Posts: 1834 | From US | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
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posted
Wow TC, Does the peppermint oil and rose colored glasses really work? Me is going to get this stuff and see if I can last longer than 10 minutes in a store....maybe I'll even be able to drive again?
Wowie, feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Dawn in VA
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posted
Just a sugg to those of you dizzy folks... Some advanced balance clinics (neurotologists usually run them) have begun using a shopping store simulation for their patients to help eyes (nystagmus), inner ear, and brain become less sensitive to all of that stimuli.
It's vestibular rehabilitation taken to another level, well beyond what it used to be.
Edited to add: You might want to consider asking your doc about ativan or xanax. It's not good to take consistently for a few reasons, one of which is that it suppresses the CNS messages received via interaction of the three-tiered pathway above- so vestibular rehab would be almost pointless to do simultaneously. BUT taking a benzodiapene when you need it most- before shopping, when you get super dizzy at an event, etc.- might be something to consider.
[ 07-07-2009, 01:01 AM: Message edited by: Dawn in VA ]
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
This is also very common in brain injured patients, another very invisible disability.
Has anyone tried a brian injury program in order to address this type of overstimulation? It is the next step for hubby we hope. Even though it can't be seen, I still think the brain is "injured" from the bacteria, somehow.
He can "function" as long as it doesn't involve other people, smells, motion, lights, noise, or interaction on any level. If anyone knows of any jobs that meet that criteria please send me a PM.
So much for a life. :dizzy:
Posts: 252 | From USA | Registered: Sep 2003
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Pinelady
Frequent Contributor (5K+ posts)
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posted
A good goggle search is: brain lesions caused by borrelia and MS
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
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posted
Wizard,
My functioning is just like your husbands. Interesting about the Brain Injury Program.
I am not able to work...so no help there. If I could find a work from home job, where I could work when I wanted on a computer, laying down, that would be great.
Best to all, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Yep, the infamous 'Walmart Buzz'. For me, I KNOW it's not anxiety. It's either too much 'information' (stimulus) and/or chemical sensitivity. Actually, standing in line at my Kroger is even worse. Their scanners beep ridiculously loudly every time an item is scanned. With multiple scanners going beepity beep beep, my brain just leaves, and I get hypotension thing going on, almost faint. Makes running basic errands a real challenge, especially getting in and out of the hot car during summer. Oh well, at least I can actually do that now!
Posts: 57 | From western Virginia | Registered: Apr 2009
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I'm trying to find a new place. We live by a power line, a cell phone tower, and I have mold. Who knows, maybe they cooked crystal meth in my home, too. ![[Big Grin]](biggrin.gif)
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