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Does anyone else here suffer from extreme sensitivity to noise and smells? And how do you deal with it aside from becoming a recluse? I just came home early from a wedding because I could no longer tolerate the noise of the crowd in the room and loudness of the music. I literally felt like I was being physically assualted. I am not very social to begin with (not that I can't be pleasant and hold a conversation) but I find it draining to be in crowds. The ceremony was outside and even with the breeze the amount of perumes every lady bathed in before they came, or so it seemed, made me physically uncomfortable the whole time. Add only knowing a handful of people, the whole experience was very unpleasant.
I was lucky that everything took place less than ten minutes from my home. I left when dinner was served and went home for a little break and to grab a bite to eat. I had no idea how anything was prepared and wasnt going to sit there hungry and not eat. Bringing something of my own was just not appealing. It worked fine but as I sit here feeling bad about the whole situation and the impact it has on others and how they view me.
I do have a very strong attitude of not caring one bit how others may misinterpret me and I prefer not to bring attention to myself but it does leave my other half, who is a social butterfly, left to answer the questions. I am never rude but just tend to disappear and reappear at times. I know it's hard on him.
What bothers me most is that no one really gets how bad this can effect someone. I feel like all I do is complain about one thing or another but unless you live it, there is no way to really comprehend how bad if feels. I look perfectly normal so how can I have so many issues. At the same time, I do myself no favors by keeping my chin up and gritting my teeth for family events. No good answer because sometimes there are just things you have to do.
Most the time I just admit that I'm nuts and ok with it.
Thanks for listening to my brief little pity party.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Deb
that is a big thing for me, it is combo of the Fibro and the Pyrrole (Kryptopyrolle which is low zinc, excess copper)
it is one of the main reasons i avoid socialising
Fixing the magnesium deficiency has helped a bit, but while i have zinc deficiency excess noise / smells etc continue to be a bit of a stress trigger for me.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I never gave it much thought before, but you have described me. I usually do fine with only a few people, but crowds have exactly the effect on me that you have described. The noise is not just irritating, but as you describe, it feels like an assault on my senses — it's actually painful.
I used to photograph weddings, mostly for friends and family. The weddings were fine. But at the receptions, as long as I was working (taking stills or videos) I was OK, but whenever I was not busy, and all the noise had a chance to soak in, all I could think of was recording the bride and groom leaving so that I could get the heck out of there. I always blamed it on my tinnitus, but maybe there's more to it than that.
And yes, I agree that everyone seems to feel obligated to bathe in perfume and cologne.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Gabes, the zinc deficiency is interesting. I will have to look into that.
I've had fibro tossed around quite a bit but I'm not sure if it's an official dx or not. The LDN has resolved most of the pain issues that I have that I would categorize as fibro-related. The arthritis in my hands flares up on every once in a while as well as the carpel tunnel. I still have a bit of neck tension and shoulder pain but I will take it any day over what it used to be. I switched to Tirosint about ten weeks ago and that seems to be the key. The generic levothyroxine by Mylan that I was taking, thinking the ingredients were safe (no dyes, no acacia, etc), was actually putting me at risk of not being able to work. I felt like I had a should injury and lifting the heavy boxes at work was begining to make me think I wouldn't be able to continue this until retirement. I felt like my tendons were going to snap.
Tex, My employer actually sends out a memo reminding everyone that some staff and/or students (I work in a large school district) have "hidden" health issues and to be aware that strong perfumes, aftershaves, deodorants, etc. can be bothersome and be conscious of their use. I couldn't believe it the first time I read it. It is a great reminder but sadly most people don't think twice about it or change their application of those products. There are a few people at work who I can smell for a minute or two long after they are out of sight and I work in a warehouse. I'd like to tell them they are offensive to me in a medical way but every time I run that scenario through my head and the possible outcomes, it just seems easier to cover my nose/hold my breath until it dissipates.
I have always been fine at work and around people when I have my job to do. It is the social idle time that turns me inside out. I don't do well with small talk and being in a large crowd, such as a wedding. I simply can't hear. The roar of the crowd/music in the back ground becomes all-consuming and I generally get very irritated because it seems to be the silliest thing on earth to attempt a conversation amidst so much chaos. I know I am in the minority in those views but it is so much a part of me that it is just who I am. Most of the time it doesn't bother me but sometimes those thoughts of "what's wrong with me" creep in and I start wonder why I just can't be like everyone else. To some degree, I put it on the list of Life's Lessons and accepting who I am. Other times, it would just be a heck of a lot easier to fit in.
Life sure is a roller coaster of emotion.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I was very sensitive to colognes and perfumes long before my "diagnosis" of MC. As a child, I remember the smell of my mothers perfume made me feel sick. My husband also claims I am super sensitive to noise which I attributed to a shot CNS due to benzo usage but who knows?
Deb,
I totally understand the feelings your having. Social situations are hard for me mainly because I don't drink alcohol or partake in any food which just makes the scene feel weird. This is one thing about this disease that I have yet to figure out....socializing and traveling. The marriage does take a bit of a beating in these areas. I work extra hard to connect on those levels we both can enjoy. Most of the time its a simple walk or a TV show. But I really struggle with wanting to get into "shanannigans" with the hubby like we used to do. Unfortunately, being the only sober one in the room makes everyone else super annoying! I guess that would make it my problem......I always love hearing how you are and think of you often.
I can relate too, Deb and all! Since I live alone, it becomes quite obvious when I jump 10 feet in the air at the sound of the doorbell, or something like that. I'm certainly different now from how I used to be. Sounds, smells and crowds - these are things I never "enjoyed" as it appears others did/do ... however, I could do them and still have a good time. Not anymore.
For me, it feels like a neurological symptom. And I don't think this one is as "easy" (I use this word relatively) as fixing a magnesium deficiency. I think it may be more of a long-term neurological damage thing from who knows what? But doesn't it make sense as these are more "sensitivities"? To me, having MC feels like the body/brain has finally reached and surpassed the threshold of carrying too many things for too long that don't serve us (stress, toxins, allergens, loss, grief, worry, fatigue, fear, damage to our intestines and body), and once it (MC) is triggered, all kinds of sensitivities are now targeted by our bodies.
Is it too far-fetched to think that loud noises, certain strong smells, social anxiety, etc. could now be targeted by our bodies in a similar way to gluten and casein? I remember my son's chief nephrologist at Stanford telling us over 20 years ago (when my son developed schizophrenia at the same time as kidney failure), "the brain is part of the body." What I mean is that why shouldn't the body now target neurological symptoms and see them as triggers as well as body symptoms such as gluten intolerance?
Thinking positively, I do believe that many issues can be improved, if not "cured". I'd love to get more feedback from others or hear about any studies done on these sorts of symptoms. All these symptoms are important to achieving a high quality of life, something each of us on this forum deeply deserves to have, yet has to really work at very hard every day.
Hi Deb, I was surprised to read your comments because I have felt that same feeling when things are too loud, or too much stimulation is happening and I just want to get away....I somehow it was just another strange phenomenon of getting older...i was 77 in June. I just get irritated over the smallest of things...loud voices on commercials; large crowds in the grocery store are the worst....I just want to leave my cart and go home! I don't because it took such energy to get there. Thanks for posting this...I feel less weird! And I sure hadn't even connected these feelings with my auto immune issues...very interesting discussion!
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Aha!! Finally someone else who can relate to this one ... I have "market phobia"! For real! I haven't been able to comfortably go shopping in a supermarket for many years (although until the past couple of months, managed to force myself to do it when I absolutely had to). I knew it was stress-related (and figured it had to do with parking lots, the narrow aisles, stress of choosing products, stress of the high cost, then stress of putting everything away) ... now there's more information and things that connect the dots. So thank you for those comments! For me, ordering via Safeway.com and home delivery has been a life-saver.
sadly for me - living semi rural there is no home delivery for groceries....
my once a month major hunt and gather zapps me big time - takes me a day or two to 'recover' from noise, smells, excess visual pollution, the people, traffic and parking in busy places,
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Holly & Gabes
Thanks for this! I was beginning to wonder what on earth is wrong with me? It's really bad when the store doesn't carry what I need....and I waste all this time reading labels of products that are not what I usually buy.
And I hadn't Tahiti of Safeway...and delivery...great idea! So thanks for that Holly!
Sunny
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
I'm loving this post! Over the years, I've learned that I am socially phobic. It has been stressful to be in large groups, small groups, noisy groups all my life but it has gotten much more evident the past few years. I am always happier if I entertain friends and family in my own home. At a party, I am usually among the first to leave. When shopping, I buy what I need and leave, no dawdling or window shopping.
Noise, especially repetitive noise, drives me crazy. I now use a sound machine at night in order to sleep peacefully. I spend summers in a tiny town in the NC mountains, mostly by myself. I enjoy having company stay with me for a few days at a time and love having my family for a week at a time but breathe a huge sigh of relief when they leave.
Perhaps there is a genetic link to this behavior. Perhaps the auto-immunity we share is the common denominator that effects our ability to function socially. Looking at my 23andme genetic info, there are genes that explain the MC (several Crohns genes), celiac (gluten intolerance genes), genes that effect absorption of vitamins and minerals and on and on. Maybe the social phobia is a by-product of our MC and other auto-immune issues.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
I'm glad others are also finding parts of themselves in this thread! A big shout out to Deb for her courage to start it and to share from her heart. Yes, I'm sure there are genetic markers for all kinds of behaviors. Where it gets most confusing to me is the breakdown of understanding, diagnosing and treatment from our medical professionals. There just doesn't seem to be the knowledge in the medical books that so many of us already have in our own life experiences. There is still a huge stigma in our society (and it even includes some medical professionals who are trained in this field!) about the brain.
That's why I return so often to the quote from my son's Stanford nephrologist: "The brain is part of the body." For many of us with MC, people don't believe we're ill because we don't "look" ill (although I'd venture to say we do to ourselves, I know I do!). The same is true and even worse for those of us with mental health issues. The pancreas gets sick and doesn't work properly; the thyroid gets sick and doesn't work properly; and so on for ALL the organs in the body, and this includes the brain!!! Why shouldn't the brain be given the same (if not more) respect, and why shouldn't it be completely logical that the brain can also get out of balance, become toxic, develop auto-immune responses and intolerances, and have some of these issues result in behavior changes such as anxiety, social and other phobias?
I had a dream the other night and it was kind of interesting. I just visualized this enormous balance scale (kind of like the scale of justice, but without the blind justice!). And there was a very large metal ball set on one side of the scale, throwing it off balance. My dream (more of a vision, I guess) was the struggle of the balance machine to try to correct itself and get back into balance with the large weight on the one side. It caused me to wake and to think ("ponder", as Gabes might say) that perhaps most disease, whether it be colitis, dermatitis, anxiety or whatever, may be "simply" the fact that our body has become out of balance in a way that it cannot correct on its own, and thus develops inflammation as a way to try to cope.
Inflammation is definitely another common denominator we on this forum share, and inflammation can definitely occur in the brain too.
It is recognized that "mental illness" seems to run in families, so the genetic component is somehow acknowledged but without compassion (probably due to the stigma).
Lastly, I'd just like to remind anyone dealing with some of these mental hurdles (and I'm certainly speaking to myself here too) to be gentle with ourselves, and not to try to compare ourselves with anyone else whom we may perceive as being "higher functioning". We don't need the additional pain or stress.
I agree, Holly, that those of us with auto-immune diseases/disorders are out of balance and suffer from widespread inflammation. I see the strong genetic link in my own family. My mother was the first to be diagnosed with MC and advised by Enterolab to stop eating gluten. She was in her 80's and we were all ignorant re gluten, celiac and the huge part diet would play in the course of dealing with MC. She ate an extremely healthy diet and simply didn't want to have to deal with the enormous change a gluten free diet would entail. All this started at least 15 years ago back when the Potty People were pretty new and Judy was moderator. Mom lived to be 92, struggling with uncontrollable D to the end. Today I know she also had Sjogren's Syndrome.
I was diagnosed with MC in 2011, celiac a year or so later, Sjogren's Syndrome about 1 1/2 years ago. My youngest son was diagnosed with celiac and has dealt with clinical depression since his teenaged years. My sister's youngest son was just diagnosed with Sjogrens. My mother also had recurring Polymyalgia rheumatica and my brother has contracted that. Many members of my family seem to have a chronic, low-grade depression as well.
Attitude also plays a big part in healing. It is so easy to become terribly discouraged with this nasty disease. It isn't a "glamorous" or trendy kind of thing that you can discuss with friends. Who wants to hear about diarrhea? Tex and this site saved me in so many ways. There is always a word of encouragement, helpful advice and the knowledge that we aren't alone with this disease.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
Actually, a few medical researchers are aware that antibodies against the brain exist and cause problems. Consider these articles:
Abstract
Autoimmune diseases currently affect 5–7% of the world's population; in most diseases there are circulating autoantibodies. Brain-reactive antibodies are present in approximately 2–3% of the general population but do not usually contribute to brain pathology. These antibodies penetrate brain tissue only early in development or under pathologic conditions. This restriction on their pathogenicity and the lack of correlation between serum titers and brain pathology have, no doubt, contributed to a delayed appreciation of the contribution of autoantibodies in diseases of the central nervous system. Nonetheless, it is increasingly clear that antibodies can cause damage in the brain and likely initiate or aggravate multiple neurologic conditions; brain-reactive antibodies contribute to symptomatology in autoimmune disease, infectious disease, and malignancy.
Antibodies defend the body against bacterial, viral, and other invaders. But sometimes the body makes antibodies that attack healthy cells. In these cases, autoimmune disorders develop. Immune abnormalities in patients with psychosis have been recognized for over a century, but it has been only relatively recently that scientists have identified specific immune mechanisms that seem to directly produce symptoms of psychosis, including hallucinations and delusions.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sheila, you mentioned being "social phobia" and gee can I relate to that!!!! I have become a super hermit but I think it is because I am afraid of accidents, assume no one understands what is wrong with me and they certainly do not want to hear about it. I am divorced, 66 years old and could never imagine trying to date with MC - can't find foods that agree with me so never go out to eat, afraid to leave home so how would I go on a date, can't imagine any intimacy (oh, how gross!!!).
Sensitivity to smells!!!!! I think my daughter thinks I am making this up but foods I cannot eat sometimes sound wonderful to me and when they are cooked they do not bother me but certain items make me so sick just to smell them. GARLIC!!!!! OMG!!! And she loves to cook with garlic and any restaurant that uses it (which is almost all restaurants), really make me sick. People love garlic - I hate it and the smell makes me sick, brings on the worst of headaches. Cooked onions are the same thing. Raw onions, same thing. Some seasonings, same thing.
Is smell sensitivity to items like this, things that MC people do not eat, is this zinc related or what? Or is this just my personal thing about certain foods?
I guess that would make it my problem......I always love hearing how you are and think of you often.
