My Bizarre Triggers, Including Physical Activity/Moving Around

I've been struggling with a lot of mystery symptoms for almost a year now, and one of these is adverse reactions to physical activity.

I can't walk far at all without stopping because I ache like I have bad flu all the time, and if I try to do any kind of physical activity, walking, climbing stairs, even going upstairs in my own house can set me off, it will make every single one of these symptoms unbearably worse.

If I have to do anything that involves going out, such as grocery shopping which I have to do today, it'll mean I'll be stuck in bed for a good day or two after.

One of these symptoms is the very high pitched tinnitus I've just been diagnosed with. I am not only struggling with managing the noise that goes into my ear, I am battling increases in the tinnitus caused by every day activities that involve moving my body. I'm not talking full on workouts at the gym, as great as it would be if I could do them, I'm talking automatic, everyday activity like walking or going upstairs in my own house.

I used to be very active, I love being outdoors, but I am a prisoner to this illness now.

I dread activities like grocery shopping, because not long after I begin moving, usually before I even leave the house, the tinnitus starts to increase, and by the time I get back home, there's about 20 different tones going off in my right ear.

I've had a 24 hour heart (holter) monitor, came back negative, so they're saying it's not my heart, I've had a chest x ray for a persistent cough, clear, more blood taken than Dracula could drink from me, nothing apart from a severe vitamin D deficiency back in March, but I had such a severe full body reaction to the supplements I had to stop a quarter of the way through the course. My body literally went into meltdown, my muscles locked up and twitched uncontrollable, I developed breathing issues and a severe hacking dry cough which landed me in A&E four times (I went in floods of tears, out of sheer desperation and not knowing why every breath is a struggle to take in, but they just told me to go away basically), I became unable to use my hands because of severe spasms in my thumbs which caused my thumbs to lock into my palms (one day I was making stuffing balls and while I was rolling them up, both my thumbs jammed up into my palms and I howled like a wild wolf stuck in a rusty bear trap), my feet would lock up into bizarre positions like a ballerina pointing their toes, the pain in my bones, muscles and joints reached a whole new level, I developed new symptoms that most of which are still with me today and are getting worse. This includes a huge increase in my tinnitus volume.

I have also worked out that an increase (if an increase is possible now) in the constant sensation of vibration inside my body heralds an increase in all the symptoms. It almost feels that the tinnitus is the sound of the vibration running through my skull.

So not only do I never experience silence, I never feel still either. I don't have any urge to move, but I do feel as if every single cell inside my body is moving non stop.

I am now having nerve type pain in the right side of my sinuses and my throat is sore on the right side.

Things that cause me a huge increase in all symptoms, including tinnitus, are:

Physical activity
Monosodium Glutamate
Aspartame
Sugar
Stress (this is a common trigger for all of us I know)
Steroid asthma meds (extreme, full body reaction to these)
Steroid Eczema creams (extreme reaction to these too)
Chemical odors such as nail polish
A lot of skincare products, hair products and makeup (these seem to enter my bloodstream via my skin and cause problems, including an increase in my tinnitus volume
Most, if not all, synthetic substances including herbs.
Irish cream coffee ( my favorite too! Bizarre. Non alcoholic, Irish cream flavoured coffee, causes me a similar reaction to the steroids
My menstrual cycles (I think I may have something like PMDD, but also the excruciating pain my cycles cause me takes a huge toll on my body thus increasing my tinnitus via stress.
Vitamin supplements (NEVER again)
Simple painkillers like Ibuprofen and paracetamol (I avoid Ibuprofen now after my addiction to the OTC Codeine crap with it in, as I've also read it can be ototoxic and paracetamol makes me sick, so if I am in any pain or get a fever now I can't do anything about it.
Any amount of alcohol (no brainer really)

So I now live with constant worry that anything I put into, or onto my body is going to make me ill like this. The first thing I think before I try a new shampoo or food etc isn't if I'll like it, it's 'will this set me off'.


You can avoid these foods and chemicals and try to keep stress to a minimum, but you can't live your life without moving your body, and who the dickens would want to?!.

I am so frustrated. I am anything but lazy, but my life now belongs to these symptoms. I have to decide if that walk into town etc is worth days on end of pain, muscle spasms and huge tinnitus spikes.

I find explaining all this to perplexed doctors to be very, very difficult. I also feel I am judged for my past mistakes with addiction and due to this, nobody wants to explore possible treatments. You should see the looks on most medics faces if I dare mention pain or sleep problems.

I feel like I am living behind a sheet of glass, I can see the world outside, but I cannot enjoy or be a functional part of it.

 

Anyone?

 

I have never seen anyone on this forum describe symptoms similar to your symptoms.

I am a fan of the show "Monsters Inside Me." It is a show about parasites. Your story reminded me of the stories told by the people on that show. I am not saying that the symptoms are an exact match. I am just saying that on that show, most people also talk about having strange symptoms and it taking years before they can get a diagnosis.

This reminds me of decerebrate posturing
https://en.wikipedia.org/wiki/Abnormal_posturing#Decerebrate


This is a sign of an issue with your brain.
"temporary posturing display indicates transient disruption of brain neurochemicals, which wanes within seconds."
"It is exhibited by people with lesions or compression in the midbrain and lesions in the cerebellum."

Could it be that parasites are attacking your brain? This would be consistent with you having tinnitus - parasites caused problems for neurons in a region of the brain that can generate tinnitus.

Please note, I don't have any medical background. You may want to run this hypothesis by your doctors. Also, you may want to keep consulting new doctors (as opposed to sticking to doctors who were thus far unable to help you).

 

The posturing you are referring to is used to evaluate the severity of traumatic brain injuries. I don't think it applies here.

@Chezombie I'm sorry to hear about all your struggles. You mentioned "research chemicals" as one possible cause of your tinnitus. What were the research chemicals (what's their mechanism of action)?
Have you been tested for autoimmune disorders? Your case sounds like a real puzzle and I doubt you'll fine the answer here, but this is a good place to come vent and commiserate.

 

Chezombie, I'm very sorry about all your health problems.
Please, have a look at this: https://en.wikipedia.org/wiki/Multiple_chemical_sensitivity
I wish you all the best.

 

@Chezombie

I have these problems as quoted. Also low on Vitamin D.

With me I had whiplash from dental - bending and twisting the neck. I also have a bad back with a ruptured disk.
The central nervous system - the spine may be your problem.

I also have loss of normal lordosis of the cervical spine, syondylosis, joint hypertrophy and facet arthritis. My thyroid, throat and sinuses can also react. Many nights my head feels like an electrical storm.

 

I know it does.

Look at the picture - it seems to be what she had described.

 

Thanks everyone for your input. I am at the point now where I would be willing to consider any possibility.

Yes, I have seen some episodes of Monsters Inside Me, and personally I find it fascinating that other life forms can invade the human body and do all sorts of things. If a wasp can turn another insect into a lava-nursing zombie, then I have no doubt that other parasitic creatures can cause havoc if they break loose inside a human body. Nature is amazing and often bizarre. Lots of the symptoms described are of a neurological nature too.

I have not been tested for autoimmune conditions, the medics do not seem concerned at all. It appears if the first batch of tests show nothing, then further tests cannot be justified. With all due respect, they are not living with this on a daily basis. I cry almost every day now, often I wake up screaming from the pain in my muscles and joints, I bet next doors think my husband is beating me. I wish someone was beating me or even torturing me, I could take that over this, as at least I could try and fight back. You can't fight back when it's your own body beating and torturing you.

While I have never had a 'traditional' traumatic brain injury, I did basically cold turkey from the research chemical Benzodiazapine analog Diclazepam (a Diazepam analogue) in September last year. The dose I was on was stupidly high and would have killed most people (the equivalent to 1000mg of Diazepam). I wonder is this dangerous withdrawal I was forced into has caused some kind of damage to my CNS, that along with the horrendous dose I was stupidly taking. All this began as soon as I stopped in September last year. I also wonder if this Benzo use covered something up, as Benzos suppress a lot of neurological disorders.

I've just about got my mental functions back now (which is amazing) as this time last year I could bearly remember my own address or phone number, could not follow stories on TV etc, now I am back to my best mentally, and enjoying having a working brain again, but my body doesn't want to follow suit.

This 'locking up' thing is really bad, the vibrating inside my body is off the scale, and of course the tinnitus is 1000 times worse.

If losing my hearing would cure me, I would sell everything I own and pay someone to deafen me it's that bad,but I understand T comes from the brain and the acoustic nerve, not the ear it's self, so this doesn't work.

My new dog reacts oddly when these symptoms are really bad. I put my leg beside her yesterday evening and she bolted upright from her sleep a good 5 seconds before my feet bent into the 'ballerina' position and seemed very concerned, like she knew it was going to happen even before I did. It's almost as if she can feel the vibrating inside my body that nobody else can. I love her to bits and I do know dogs can be trained to predict seizures and allow the person to get to a safe place, so perhaps she is detecting something?.

The suggestions Bill has made are nothing compared to the things I have considered, usually when I feel like I do now, like there is nothing worse than being alive, I have considered things like Nibiru (I have an interest in physics and astronomy, I would never have allowed myself to be pulled in by this stuff before all this started, but now everything is open for discussion), 'rips' in the fabric of our universe, interference from other dimensions, aliens, ghosts (I've seen ghosts all my life and do believe strongly in them, but to imagine them causing all this?!, so yeah, parasites and TBIs don't seem so extreme now.

Right now, if someone said give me everything you have and I'll give you 24 hours of silence and peace in your body, I would not hesitate before signing this deal in blood.

One positive is my cough has stopped!. I didn't need that respiratory appointment. It was possibly hay fever or a long lasting virus. We'll never know.

I want to go back to the GP, but what do I say? I'm really fed up now. I'm starting to feel like I am trapped inside my own body.

It feels to me that medics judge me based on my past mistakes. I have not abused drugs in over a year now, but they still look at me like I am a good for nothing addict. I have NO desire to abuse or even use any drug as I cannot even take Ibuprofen for the severe period pain I get now (also began when all the symptoms did), as it sends these symptoms off the scale. So I just writhe around in bed, delirious from the pain for two days (alas, this is still nothing compared to the symptoms).


I may try printing something off about the vibrating inside my body thing and take that to the GP, I don't know, hell I'd drink acid if someone said it would fix me.

 

Possibly. Have you seen a neurologist? You mentioned seeing a GP, but your symptoms sound beyond what most GPs would deal with.

 

@Chezombie
"My body literally went into meltdown, my muscles locked up and twitched uncontrollable, I developed breathing issues and a severe hacking dry cough which landed me in A&E four times (I went in floods of tears, out of sheer desperation and not knowing why every breath is a struggle to take in, but they just told me to go away basically), I became unable to use my hands because of severe spasms in my thumbs which caused my thumbs to lock into my palms (one day I was making stuffing balls and while I was rolling them up, both my thumbs jammed up into my palms and I howled like a wild wolf stuck in a rusty bear trap), my feet would lock up into bizarre positions like a ballerina pointing their toes, the pain in my bones, muscles and joints reached a whole new level, I developed new symptoms that most of which are still with me today and are getting worse. This includes a huge increase in my tinnitus volume."

I have a friend who had these symptoms, but he doesn't have tinnitus. With him it was one disk in his neck and one disk in his back. He was under the care of a neurologist - @Alue

 

Nope, no referral to Neurology despite me repeatedly asking. I will give it one more go, then change GPs if needed. They keep cherry picking symptoms, e.g the breathing issue, and telling me to wait months on end for useless appointments where I just get told there's nothing to see.

I have told them I have pain and numbness in my legs, feet, arms, back etc, not so much as an MRI. My husband has Cauda Equina Syndrome, so I know all about issues with spinal discs, I've told them this.

I really think I am being dismissed because of my history of substance misuse.

If I get referred for one symptom, I have to wait months for that appointment before they're willing to consider another.

Told them I often cry all night because of the pain and vibrating sensation all through my body, just got told I could go on the 6 month waiting list for non specific 'counselling' which I won't bother with, so it's obvious they see no urgency and probably think it's all in my head. If anyone thought I was worth it, I'd have seen a specialist by now, quite clearly I'm not.

 

Chezombia, look up mast cell activation (MCAS) and EDS symptoms. You've listed many of the triggers in your post. Kind of the bad news and the good news if you have this. Bad, you may have to make changes to lower your T. Good... your T could well be lowered (and you might feel better overall) by eliminating these triggers. Worth a look.

Here is just one entry but Google and FB are full of info on triggers. Salicylates (flavorings, artificial food and other chemicals, NSAIDs, etc) def. cause tinnitus.

http://www.mastattack.org/2014/10/mcas-effects-on-eyes-ears-nose-and-mouth/