Time to let friends and family know

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Sep 13, 2012.

  1. rosemarie

    rosemarie Member

    that I have fi bro and many different nervous system senstivities. My body is wired funny and I don't mean funny ha ha but it is not normal to react to sounds,of microphones, lights, people talking, baby's crying,lights that buzz. Fan's and air conditioning all make their own sounds and vibratations that go thru my body. It is not plesant to sit for an hour not only being distracted by noise's as well as the vibratations that go with them.
    I feel these sounds just as one feels loud music with a beat.

    The only thing is that with the mulitiple nervous systen sensitvies I still hear the sounds and feel them as well, it is quite painfull at times when I go out in pubilc and feel all ths sounds around me and end up in more pain than ever.

    When I attend church I hear and feel the noise's of the microphone, the buzzing of the lights, babies crying and they all get mixed together and it hurts my body. So I thought that I would share how I feel with them so maybe they would understand that I do want to attend church but with all the nervous system sensitiveites I am in more pain than ever. I hear and feel the sounds that people make , I also feel the sounds of the like the lights, the microphones, the benches that squeak, I feel these sounds and it causes severe pain in me.
    I also have Sensitivites to chemicals , that includes scents of perfume, lotion, shampoo and hair spray, when you mix all of these together I am not able to listen to what is being said only feel the added pains from fibro, and the sensitiveities of chemicals & nervous system.

    I hope that this wil help people to understand me better and to learn taht I am not avoiding them or being antisocial, it is that I feel noiise's and smell scents that bother me and can cuase pain.
    I hope this will help pole to understand me better.
    Sorry if this sounds all mixed up , it is late and I am so tired and sleepy, but when I went to bed I tossed and turned and woke up my hubby. Thanks for listening to me.
    [This Message was Edited on 09/15/2012]
  2. sascha

    sascha Member

    just keep that in mind. tell them based on your need to say it, not based on any expectations for the audience. seems as though i've learned that over time--that i can never predict how what i say in a heartfelt way will be received, so i don't base my decision to let people know what's going on with me anymore for that purpose, but if I feel need to say something for my own sake, then i will.

    i've got that same reactive thing going on that you wrote about. i like Dr. Cheney's phrase for it >>>'excitatory neurotoxicity' - doesn't that perfectly describe it? best to you- Salome
  3. sunflowergirl

    sunflowergirl Well-Known Member

    BUT unless they also have pain and other things, they just don't want to hear. You sound like I was until about a year ago. And.........if you do try to share don't be surprised if they tend to pull away from you. I just tell my family or friends (those that are left) that I'm in a terrible flare and let it go. You can't make them feel sympathetic.......it only works for a short time. I'm sure that others can attest to this. I realized I was becoming a broken record around everyone and I had to stop.

    Also......I carry silicone ear plugs in my purse and have extras at home. These are wonderful! You can adjust how much sound you cut out of your hearing by pushing them in a little farther. Also.....wear some sunglasses even indoors. If anyone asks just say you're light sensitive.
  4. hermitlady

    hermitlady Member

    I swear, I can hear soooo much better than anyone I know...and I don't know if that's a good thing! LOL

    My son always comments "you have such sensitive hearing!" when I comment on various sound related things in my environment. Like you, it hurts me!

    Going to a restaurant can drive me nuts, anywhere there are
    crowds, lights, you name it. I will often take a dose of Ativan before going out and I also take my silicone earplugs. Even on car rides, the earplugs go in! And it doesn't help that my dh has 30 percent hearing loss...can't stay downstairs when he's watching TV, ugh!

    So, yeah, I can totally relate...most people don't "get it". How can sounds hurt??? I can't explain it, but I sure can feel it!

    Oh, and don't get me started about the barking dogs that live across the road from us...they TORTURE me!!!
  5. MicheleK

    MicheleK Member

    I think the way you explained your sound sensitivities gives a good description that others can grasp. I agree that it is good for us to speak up about what we are experiencing in the hopes of mutual understanding. It is helpful to those in your life to have some answers instead of leaving them to fill in the blanks somehow themselves with guesses about why you do or do not do certain things. Clear communication is a great tool in relationships.

    Much like the others have said, do it for yourself without great expectations. I have found that even the best of my friends who do try to understand, often grasp it for a short period of time and then go into a phase as if they never heard it before. I try to tell myself that if I were on their side of things, perhaps it would be difficult for me to grasp and hold onto such unusual symptomology.

    I wish you the very best and look forward to hearing how it goes for you. Hugs, MicheleK
  6. sunflowergirl

    sunflowergirl Well-Known Member

    That means she's like l2' away from my bedroom when they let her out. They're pretty good, for the most part, but there are those early morning hours when I think they must fall asleep again and don't hear her constant barking to come in.

    A retired couple that used to live there owned two little yappy dogs and sometimes they would go on a little weekend jaunt and leave the two alone for a dogsitter to come feed them. They had a doggy door and those two were in and out. I can't tell you the times in the wee hours I called the police because of the nonstop barking and was told all they could do was send a warning letter.

    Seems to me I read somewhere about a "whistle" that only a dog can hear. Wonder if using something like that would shut them up.

    That's why I've decided not to get another dog after ours died a few years ago. Can't stand the barking. Cats are much more quiet and self sufficient.

    There's a lady in the neighborhood who cares for small shelter dogs.......the most I've seen her walk at one time was TEN! Can you imagine the barking when they came across another dog being walked! I guess I'm lucky.....we could live next to her.
  7. Saoirse3

    Saoirse3 Member

    As the owner of 4 parrots and 3 cats, in a 2 bedroom, upstairs apartment, I WELL know the noises my animals CAN make. However, I have trained them NOT to make noise under their night cage covers (unless there is something seriously wrong with them, of course!). I play and train at a specific time, and I talked to all my neighbors and invited them up to meet the flock. Nobody has accepted this offer, but know the birds are there, as well as the cats. I think pet owners should have a routine, follow it as close as they can and not just "let nature take it's course".
  8. rosemarie

    rosemarie Member

    how I feel, and tend to think I am just having a pity party for myself. I don't mean to dwell on the subject of fibro and how it makes me feel, I know the pain that I live with and others don't and most as some ohave said really don't want to listen to it again, as they have " Heard it all before" I have been told that I am whining, complaining about this "Disease" that no one can see or realy know that I have it.

    I am just trying to get my family to read the letter to normals so they can see it is not just me making up things about how I feel, about the pain I live with each day. Your right i can't make them read it or accept the infomration in the letter to normals. I just want to put it out where they can find it and hopefully will read it just to get me from talking about it.

    I want people to know that I try to live as normal of a life as possiable but there are quqtie a few obsicles in my way and I will sstumble thru life while living with fibro.
    I have been told so many times taht "No one can be in that much {Pain all the time}, but untill you live with a chronic pain disorder illness I get that it is hard to understand how this makes me feel.
    People are always learning new things about cancer, asthma, heart disease, female problems so why can't they lewarn about fibromyaligia and learn that it is more than a pain in the rear. I Live with it and I wish that people would learn more about all chronic illness's, chemical senstivities, nervous system sensitivities, and learn how these chronic pain illness's madke our lives so much harder to work thru and be able to do the "Normal things in life".
    It is a big wish that people would be willing to learn more about chronic illness's and how they affect each of us differently. will they listen? I don't know.. some will and most won't, but i had to put it out there so the few who want to learn more have that chance to do so.
  9. rosemarie

    rosemarie Member

    I take, I tend to forget and need some assistance to remember what supplements will help me the most and hel me to sleep.

    What are the best supplemetns to assist me in sleeping? I really needthose to help me get more than four hours of sleep.
    I know you ahve told me before about what supplemtns are best for me could you repeat it again for me.
    Thank you for your help.
  10. sunflowergirl

    sunflowergirl Well-Known Member

    First off, there's no way I can sleep if I'm in pain so I have to analyze how I feel hours before bedtime. I have tramadol for when the pain is REALLY bad but the phamacists said not to take anything closer than 4 hrs. from taking this. I also use ice and heat depending on the pain. I have 2 extra long heating pads to lay on plus an assortment of rice filled socks and pads I made. I have 5 of those 4 x l0 reusable ice packs from the pharmacy. I keep them in the freezer. I use a knee hi sock with the rough side of a piece of velcroe sewed on the toe end. The ice pack slips into this then I can velcroe it around my neck or use it on my head.

    If it's just regular pain, a level 5 or 6, then I take 400 mg ibuprofen along with:
    3 mg. melatonin, l00 mg 5 HTP (this is supposed to relax the brain) Peaceful Nights (from Prohealth) and lemon balm from Solaray. I also take magnesium. If I wake up during the night and have trouble going back to sleep I'll take another 3 mg. melatonin. If I feel agitated when going to bed then all I take is l00 GABA and the melatonin. The GABA calms the brain down to allow you to sleep. Used to take tylenol PM or ambein but feel loopy the next morning......this doesn't let you sleep naturally it just puts you out.

    You just have to understand this about talking to others about your suffering......no one wants to continually hear about this. They can't help you and they get tired of the broken record. Trust me when I say this.....even my own daughter told me to keep it to myself because it bothers her that she can't do anything for me.

    Make a list of everything useful people have told you then try each one. And this "disease" isn't classified as one because there are no lab tests that say.....ah hah....that's what you've got. FM is just a "garbage dump" of everything wrong. I'm even learning to not even say fibromyalgia anymore....just say flare.

    Also I'm sure that along with FM I also have myofascial pain syndrome because this pain is l0 times worse than the achy from FM. Get the book, Trigger Point Therapy Workbook by Clair Davies. This was a real eye opener for me and made a lot of sense why all this extreme pain. I read about it from someone on this board years ago.

    [This Message was Edited on 09/15/2012]
  11. MicheleK

    MicheleK Member

    Take heart. Change is coming. A few years ago there were no drugs approved for FM because few beleived in it. When big pharma took notice of how many people are afflicted, they saw $$$.

    Recently the NIH held a chronic pain conference. There are many wonderful things going on in the field of research into FM. This will bring new treatments and also make media headlines. When the media picks up stories and talks about it in a serous tone, your family and friends will hear of it. Things will get better. You may have to take medications to have a better quality of life but change is coming!

    Hugs, MicheleK

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