Strange undiagnosed chronic illness

[joeylennon]

Dear All,

This is my first time writing on a forum after over 8 years of having a very strange, undiagnosed mental illness. The reason for this is because the illness severely affects my mental and physical energy and so I need to be really really motivated in order to do anything that requires a fair amount of effort.

I am now motivated to do so because I have got to a point where I am beginning to lose hope that I will ever have a moment of peace again. And I really want to know if there is anybody else out there who has or has heard of a condition like mine.

My illness involves a strange, horrible spinning vortex-like sensation on the left side of my head which makes life hell. It is always there and is always negative. It means my body is always stressed, tense and life always appears negative. The feeling on the left-side of the head leads down into the left shoulder where it just feels like the energy is very blocked.

Over the years I have spent tens of thousands of pounds on regular and alternative medicines and treatments, I've been to so many healers I can't remember, I have tried just letting it be and not doing anything, I have tried so many nutritional supplement regimes it begs belief. And nothing has helped.

It doesn't feel like regular depression or anxiety. I used to have these when I was a teenager and the sense was different. What I have now is permanent, it is always there. And it affects everything. I don't feel like a whole person. I have no willpower and no intention...I just amble around and what happens happens. I obviously therefore cannot work and do not enjoy doing anything. I still do things just to distract myself from the suffering, usually riding somebody else's energy as it's easier that way eg. taking the dog for a walk with somebody etc.

My quality of life is zero. I'm starting to wonder if I might have a tumour or some kind of brain damage and have scheduled an MRI for later this month. In a way I really hope they do find something...it would be such a relief as the feeling of not knowing what is going on and therefore not being able to target help is awful.

Even being able to search for help is becoming harder and harder as my energetic resources are dwindling more and more. It's like being bound and gagged by your illness.

I have been on anti-depressants and anti-psychotics...neither of which worked. And it is obvious to me that psychotherapy or CBT is pointless having tried them.

My condition began in my teens with obsessive worrying and then a strange condition in which I was seeing coincidences in the world that I translated to mean that bad things were going to happen if I didn't do certain things. Like stop listening to my favourite band for example. This gradually turned into the condition I have now.

Every week or fortnight I get really stressed by the whole thing and then I get a day or two of very intense anxiety and suffering.

I'm beginning to lose hope and have been having suicidal thoughts.

Has anybody heard of anything like this condition??

Thanks,

Joe

[DaneV]

Sorry, double post.

[DaneV]

Hey Joe,
Sorry to hear you`re going trough this trouble for such a long time. I know its frustrating to have all this horrible mental and physical symptoms, without anybody that is able to tell you what`s exactly wrong with you.

Your story does sound a little bit like mine. I`m also having a lot of strange symptoms, and to this day no doctor was ever able to say what`s exactly wrong with me. I`ve also visited numerous alternative practitioners including a homeopath, two ortomoleculair "doctors", an osteopath, a chiropractor and even a new age healer. I did try numerous diets and supplements people recommended me. Nothing every worked even the slightest bit.

When i look back to it, all these "treatments" were a total waste of money and time but i was (am) desperate because i know this "condition" would eventually kill me (most likely i would kill myself because i couldn`t handle it anymore).

But the more i research about anxiety and depression, the more i`m accepting the thought that all my problems could be 100% related to the anxiety and/or the depressions. I`m also getting an MRI done next week, but i don`t expect any positive results (nor does my neurologist). But if the MRI is negative, i decided to drop the idea of having some physical disease and focus only on the mental aspect. After all the tests (3x blood, hormones, lungs, heart, allergies) I have no other option but accepting that this is mental.

Again, i`m reading a lot about anxiety disorders lately and i`m starting to understand that anxiety can cause so many horrible symptoms, and why this happens. Our body has a very good way to handle acute stress factors by releasing stress hormones (adrenalin, cortisol) and thereby creating a flight or fight response. When the prehistoric man sees a bear, stress hormones make him able to better fight the bear or run away from it. After the stress factor (the bear) was gone, his body would be able to calm down and restore hormone levels back to normal.

But when you create a chronic stress factor in your mind (for example worrying about your symptoms!) your body constantly releases this stress hormones, causing it to be in a flight or fight mode all the time. This not only exhausts the body, but it also causes a lot of symptoms. If you worry about this sensations, it causes more stress hormones to be released and the circle is complete.

It is known that stress can not only mess up your hormone system, but that it could also prevent the regeneration of nerves (neurogenisis) in the brain, especially in the hippocampus. This leads to even more mental and physical problems. I find the theory that antidepressants work by stimulating this neurogenisis plausible, but that is yet to be proven.

So it`s not so strange and also not at all uncommon that people with an anxiety disorder think they have an undiagnosed disease. I think a lot of anxiety sufferers (at least me) for example once had the idea that they had MS. Again this is not strange, because both MS and chronic anxiety can damage the nerves.

The difference is however, that the body with anxiety can reverse this damage because in essence its healthy. But this process can take time, and the right things have to be done to calm the body down and giving it the chance to restore to a healthy state.

What are the right things? I wish i had a clear answer. I think its different in every situation but the first step is to accept your symptoms. Believe that they are caused by anxiety and that they are reversible. Not only believe it, but be 100% sure of it. If you really, really accept the fact that you have this symptoms and that they are caused by anxiety you will not add this mental stress factor every time you feel them and your stress hormones should be released less and less.

I know this is a very hard thing to do and i`m struggling with it myself daily . I Hope the MRI will take away some of my doubts and i`m thinking of trying medication again to hopefully speed up this process. On the other hand, i know i have to be patient; if i`m not, i will probably never get better.

Hope this helps and i wish you all the best. I hope we get better eventually, because these anxiety symptoms can make your life a living hell. I wouldn`t wish it to my worst enemy.

Also take a look at the symptoms anxiety can cause:
w*ww.anxietycentre.com/anxiety-symptoms.shtml (remove the star in the url, i`m not allowed to place links yet)
The owner of this site claims that he had nearly all of this symptoms 24/7 and in his video he also states that a lot of people with anxiety think they have some kind of serious, undiagnosed illness.

You could also take a look at the book "hope and help for your nerves" by claire weekes. She explains really well what causes this anxiety symptoms and what you should to to overcome them.

[DaneV]

Oh by the way, this are the symptoms i`m experiencing. Some i had for 5-6 years, some i have for a shorter time.

* Always feeling tired (this was my first symptom and it took more then a year before the other symptoms came in)
* Feeling anxious and often depressed, often without any external cause.
* Brainfog
* Not being able to concentrate; I haven`t been able to read a book for years while i used to love reading. I can occasionaly watch a movie or TV, but the enjoyment i get from it is not comparable to "when i was normal". The fact that i`m able to write this forum post means i`m having a "good day".

* Feeling that i am losing my mind.
* Problems with social interacting. I used to be an extrovert person, now i`m very introvert.
* Being emotionless. I know i love my family, but i just don`t feel it anymore.
* Feeling the world is unreal
* Forgetfulness
* Blurry vision
* Nausea
* Feeling my heart beat
* Tight chest
* Shaking/trembling
* Hypersomnia
* Headache
* Tinnitus (ear ringing)
* Extreme dizziness almost 24/7. No hyperventilation or other cause found.

And all the times i went to see a doctor, after the test they told me "good news, there is nothing wrong with you" .

[DaneV]

but you also need to accept that it may take a month , six months , a year or two years to go but if you accept it and support your body then it will slowly fade .
cheers kev

For me this is very tough and i haven`t been able to do this yet, allthough i know its a vital point of recovery. I`m 23 and i`m still in college. These years are crucial for the rest of my life but this "illness" is messing it up completely. Then there are my parents who paid for my study and i don`t want to disappoint them. If i was mid-aged and had some stable grounds I think it would be easier for me to accept.

Thats why i am going to try medications again, hoping it could improve my functioning a little in a relative short time, so i can finish this study. But while i`m on the meds i will sure continue working on myself.

[joeylennon]

Thank you both for sharing.

DaneV - in particular the first 4 symptoms you listed are exactly part of what I am experiencing...but also many of the others.

Thanks forwells I will check out that site. I would write more but energy is low today.

Thanks again for replying.

[DaneV]

DaneV
You know what you may not like this and i didnt when it was told to me . Get off your ass and do something about it then , stop playing the poor me card and feeling sorry for yourself , Yes your anxiety is playing into this but that is were accepting it for now is the key . You are only accepting today for in a months time it could be different .


I Know I should and you`re absolutely right. I tried many times to do something about my anxiety (and depression) by living healthy and doing the relaxation exercises but when i don`t get better in a couple of weeks I give up and feel sorry for myself that i`m not better.

I know the way to recovery is to accept, not feeling sorry for yourself and to do the things that are constructive. But feeling like a victim is so easy; it means you have no responsibility and there is nothing you can (or have to) do. And i`m keep on falling for that.

[Robbed]

I`m 23 and i`m still in college. These years are crucial for the rest of my life but this "illness" is messing it up completely.

When it comes to your life, there is no 'point of no return'. In other words, just because things are not going so well at this point in your life, this doesn't mean that the rest of your life is going to be screwed up as a result. Hell, some people don't get things straight in their life until they are 50+. This doesn't mean it will take you this long. But the point I am trying to make here is that, if things aren't going quite well now, it's not like your life is going to be a total loss just because you are not successful by 25.