Noise, me and Fibromyalgia
In some ways this post is me trying to get my head around how much things change, things that are out of my control and I want to understand, but can’t quite get my head around.
I’ve always been someone who can’t stand silence, in my childhood I would wander from room to room switching on the TV or stereo. I openly admit as well, I work better with some sort of background noise.
In my teens I adored going to concerts, the noisier the better and yes I played my music louder than I should have in my bedroom, with no regard for my parents or those nearby.
As I got older I of course stopped with the over the top noise, though if I had my headphones in I was known to turn them up perhaps a bit too loud. Then I got Fibromyalgia and everything changed.
Part of Fibromyalgia is sensory overload, a lot of people who have this horrid illness, find they suffer heightened sensitivity to light, touch, noise, smells and temperature and these issues affect our pain levels, can cause headaches and leave us fatigued., as well as for myself setting of my anxiety.
In the past it is something that has played a part in my life on and off, I wouldn’t know how I would wake up from day to day. However, since Christmas it has been awful, every noise feels like it is resonating through my head, the TV has to be down low, even the normal sound of talking can make me flinch and the noise of someone walking on the floor above me feels like a loud boom with each step and I admit I can’t deal with it.
My head tells me this is silly – it’s not normal to be reacting like this, being unable to cope with these everyday sounds, while my body goes off almost into shock, unable to get away from the loud and abrasive noise it seems to think I am actually hearing.
Each day at the moment is a struggle, my pain levels are sky high, and my anxiety is off the charts and the want to just hide away from every little noise. It is strange to think once upon a time I wanted things louder.
All I want is to live a normal life, enjoy every day and wake up looking forward to what the day might hold, not dread what it will bring.
I have Fibro having recently badgered my Doctor into getting me referred, at work i find the chattering and noise too much at times so i put my headphones on with quiet calm music that seems to be helping with the anxiety.
it’s the needle like pain in my fingers at the minute and the twitchy legs
It’s horrid isn’t it – I’m always finding new things that I used to love that I can’t deal with anymore be it loud noises or smells. I definitely get twitchy legs as well. Is it pins and needles in your fingers? I have that and they thought it might be carpel tunnel so I have to wear splints at night to try and ease it.
can I ask how you actually get diagnosed with this?
My son is almost 16 and is very sport and active. BUT cant cope with bright lights, smells and sounds. In cold weather his joints seize and he has Raynaud’s so his hands go purple. In hot temperature he faints. He has a low pain tolerance . His pediatrition referred his for physio which is of no help. we had read about this and suggested it but they dismissed it because of his age
I was diagnosed by a rheumatologist – it’s sadly mostly a diagnosis done by eliminating other things, as there is no blood test / xray / scan that will detect it (that I know of – it has been a while since I was diagnosed). There is the pressure point test which is 19 points (8 pairs) around the body that are painful to people with fibro – they normally say someone with fibro will find at least 11 of the 19 painful when a certain amount of pressure is put onto them.
I have such empathy for you. I am not a Fibro sufferer but I have Crohns which brings it’s own set of challenges. I hope things improve for you soon.
Giving the fibro a middle finger for us both! Touch is so painful for me at the moment.
I’ve never heard of fibromylagia before, but I am very sensitive to noise too. I can’t sleep without earplugs! I get bad headaches too and also have the tv very quiet.
I don’t have fibromylagia, but I have a sensitivity to certain noises. In fact, I’m unable to concentrate on my work unless my house quiet and peaceful.
I didn’t know this. My sister has Fibromyalgia, I will have to see if she has this sensory issue. I hope things get better for you. soon.
Fibromyalgia is a horrible illness. I see my stepmother struggle with it each day and it’s horrible! She’s exactly the same as you, lately she can’t deal with loud noise…I’m sorry you have to go through this. I hope things begin to improve one day! Xxx
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I am really sorry to know what you are going through, as I had no idea that Fibromyalgia could cause such troubles for the ones having it. It hurts when there is no cure yet for such worst symptoms that could affect one’s life.
I’m so sorry to hear the noises bother you. I know that can’t be easy at all.
Oh wow! I didn’t even know there was such a thing as fibromyalgia! Sounds awful and I wouldn’t wish anyone to be going through this. I’m so sorry to hear that you suffer from this. I actually can’t fall asleep if there is not a fan running. totally silence makes me ears feels weird. I can’t really explain it…
Sensory overload sucks. I hope you find a way to get the relief you need.
I can relate. I have an auto immune disorder , chronic migraines and other painful issues and sensitivity to noise and light has been a huge issue for me that gets worse over the years. While you will often feel like no one in your life really understands, always remember there are people out there who do.
@Chrystal | Nevermore Lane,
Thankyou so much that’s lovely, at times it feels people don’t get it, as a Christian you feel I should be well, why do I have a chronic illness. But we have fallen body, we still need doctors our faith may be stronger in it, but at times it affects our faith. So hard I have nequews, I love to see, but I can’t deal with noise to much, or being in a home a different home, having to stay there 9 hrs, while there may be noise, I like my own home. 3 hrs with people with kids is enough, I love seeing them, but are relieved to go home.
@Chrystal | Nevermore Lane, I love what you said yes there are others who get it, my ears pierce from noise, I need to go into a different room. Lights hurt, sound on TV I have to ask to be lowered, cafes make me tired, I zone out. I can do it, but not for long, need to escape noise alot. Adhd Autism I have to, which does create the problem with noise lights, sensory overload.
I hope you all can have peace I pray you all can be ok, supported, please go easy on yourself.
I was just like you as a teenager with the loud music. I could never imagine what you must be going through I have two toddlers and it is always loud here. Some days are really hard, but for you it would be much worse. I recently watched a documentary on juicing and one of the people had fibromyalgia. Maybe you could look into juicing and it would help. I hope you find something that makes you feel better soon.
Holy cow! I have this issue – it’s horrible. I know I’m being irrational and yet…
My mom had Fibromyalgia and when I started to have symptoms, I went to my doctor two months ago. He still won’t diagnosis me or even ask me about why I think I have it. So frustrating!
I may send him this.
It sometimes takes a long time to be diagnosed. You may want to switch doctors too or tell him there is more research on this disease now and maybe he should look into it.
The noises can really get you in a tail spin and I know exactly how you feel. There are days like this but we always make it through. I think the biggest fear we all have with this disease is the fear of the unknown each day. We all need to tell our self this to shell pass and believe me when I say I know it seems sometimes it will never end. Hope you feel better soon.
I had no idea that fibromyalgia was triggered when experiencing a sensory overload. What a terrible thing to have to experience.
I’m sorry to hear this. I don’t know a whole lot about fibromyalgia. I don’t know anyone personally that has it. I can understand how you could be struggling. I deal with migraines and they’re a huge struggle for me. Some days I just want to sleep til it goes away.
I have a chronic migraine so I understand the sensitivity to the noise. Loud and abruapt noise triggers my migraine right away.
I have a cousin suffering from fibromyalgia and I know how terrible this is. I am sorry to hear that you are suffering from this.
I did not know that noise can effect a person with Fibromyalgia. It must be so hard for you. I hope you can find something that helps.
Fibromyalgia is a terrible thing to suffer from. My friend has been dealing with it for years and it can be so hard on her. It is difficult knowing there is nothing i can do to help.
I can totally relate, I was just released from the hospital after a week long stay and a heavy diagnosis. After 4 spinal taps and a ton of other tests, they say I have trigeminal neuralgia, I am still trying to accept it, it’s quite a game changer.
I know a few people with fibromyalgia and it’s not a good thing. So sorry to hear you are suffering like this.
I have fibromyalgia as well and have for years now, I know exactly what you mean.
I didn’t know about Fibromyalgia and i didn’t know how difficult it is.
I know very little about Fibromyalgia. Hope you feel better and get well the soonest time possible.
I can only imagine your struggle with this disease. I used to be the same way about noise and could not stand the silence, but as I get older I definitely cherish it much more now.
I am sorry that you are suffering like this. I also didn’t know that noise could cause discomfort. I learned a lot today. I hope you feel better soon.
I have never liked noise of any kind but I will tolerate it. When I am home by myself, I always have the TV off or turned way down. My husband on the other hand loves everything loud. Drives me nuts. I am so sorry that you are suffering through this disease. I hope you are able to find relief and comfort.
My cousin has this, but I never realized that noise could cause that much discomfort. I am sorry that you have been struggling with this lately!
What a very real struggle you are experiencing, you are bringing light to your illness and educating others and raising awareness. I never knew sensory overload was an effect of fibromyalgia.
I’m sorry you are going through this. I didn’t know that noise could be a problem for those with this disease.
I am so sorry that you are going thru this, I have a friends who has the same thing, so I know what you mean.
My mom suffers from this illness and that’s all she has known for her entire life. Since medicine has progressed to this stage she has been able to find the right combinations of medicine to help bring down the level of her pain, to help her function. She’s like a new person now and it’s so great to have her back now.
So sorry to hear you have fibromyalgia. I can’t even imagine the pain you must feel.
I am sorry that you are going through all this. Do the doctors give you anything you can do to help? I dont know too much about fibromyalgia so I’m sorry if that is a silly question.
So sorry to hear that this is causing you so much irritation. I hope that you heal and feel better soon.
I too have problems with noise on occasion. My husband doesn’t understand when I complain about the noise sometimes.
I also difficulty with exercising somewhat too. Im trying to start walking more but the cold weather makes it harder. Come on spring.
I am so sorry you suffer through this , i know a few people who do as well and often they don’t say much due to it being so hard to live with.
What an awful way to experience your surroundings :-(. I don’t know much (or anything really) about fibromyalgia. What is the treatment for it?
Very sorry to hear you are going through that.
We currently live in an apartment and the sounds from the tenant above us are super loud and drive us nuts. I can only imagine how it would feel for you in a similar situation.
Best of luck and I hope you find a way to deal with this.
That sounds so disruptive. I like having a quiet room when I’m working so I’d be totally distracted if every little noise affected me like this.
Thank you for sharing this is recently had to change desks at work due to lighting. I feel like a pain in the neck but can’t cope with the headaches as a result of being under a bright light. I now feel not so alone dealing with this horrible condition. Hopefully soon the nhs will find out more about it and be able to help us. I too suffer with anxiety but I do think it’s because of my fibromyalgia x thank you again for posting this x
I have been suffering from a lot of these symptoms, but my neurologist says it is tension headache. Who knows!
I am so sorry to hear. I work with children who have sensory issues and it is not easy. I hope you can find inner peace.
I never knew that Fibro effected other sensory issues like this. I hope you feel better and get to have a break from this soon for a while.
Its tough living with fibromylagia. Its even tougher trying to explain it others, and those who do not understand it or have had anyone affected by it. Thank you for sharing, for helping others to understand!
I too am a person that has to have background noise on. The first thing I do when I get home is turn on the TV although I’m rarely caught sitting there watching it. I can’t imagine one day just not being able to tolerater everyday noises that come with having a life and family…..
I’m so sorry you have to go through this. I have friends with fibromyalgia and I know it must be so difficult.
I can relate; I have fibro and sensitivity to sound is something that’s slowly getting worse for me. I have always loved alternative music, really loud screamo songs & lots of guitar solos. I never used to have a problem listening to music at ridiculous loud levels, especially on my ipod with my earphones. Over the last few years, I have been finding it really difficult to listen to music in my earphones… I can do it for maybe 15 minutes and then I get a headache so I have to stop. What makes it more stressful is that I’ve always had a problem with hearing things when there’s background sound so if people around me where doing stuff I would get irritated because I couldn’t watch TV. I overcame this problem by turning the TV up and I’ve found that I now can’t do that because I get a headache! 🙁
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I know a lot of people who have fibro. I think that some people don’t understand how serious it can be and what all can affect it. I’m sorry you have to deal with this.
I have a cousin that has this too and I feel so bad for her. Hang in there girl! I didn’t know that sensitivity to sound was apart of it. That explains a lot about my cousin!
I am so sorry that you are going through this. I didn’t know that Fibromyalgia could cause sensitivity to sound.
Oh no, I had NO idea you were suffering like this. I am so sorry you have to deal with this.
Ugh. I’m so sorry that you’re suffering with this. I have a family member with fibromyalgia, and she’s always miserable. She tries to put on a good face, but you can tell she’s always uncomfortable or in downright agony.
I’m sorry to hear you are going through this. Chronic illness is awful to endure. I hope you can find a way to relax about noise a bit more, it must be so frustrating. I am enjoying the quiet of the house for half an hour while my husband does the school run. This is a rare moment, we both work from home so this hardly ever happens, this is a noisy house usually.
I have recently been diagnosed with fibromyalgia so I can completely symphasise with you. Along with my crohn’s and I have felt absolutely awful these past 8 months especially – tired, aching body, bone pain, not sleeping, foggy head, forgetfulness, tummy and bowel troubles……etc etc… I was beginning to feel I was going mad but after being seen by a rheumatologist, I was diagnosed immediately. Doesn’t help that I am severely vitamin d deficient and also have osteoporosis – I think I need a body transplant. Hope you continue to improve and feel more ‘normal’ soon – that is my goal too x
Your symptoms are those of mine with the fibromyalgia so you are also not alone.
Tracy I too suffer from crohn’s, fibromyalgia, arthrtis & osteoporosis as well as shorten bowel from my bowel operations & bile acid malabsorption they are awful especially when you need to run to the toilet but the fibro won’t let you lol! Could I ask did you ever have inflixmab infusions for your crohn’s? I’m starting to see a trend in people with crohn’s developing fibromyalgia after this treatment & think it needs to be looked into.