Always feel bad but medical tests always normal

OK - So, just to be CRYSTAL clear, the following is NOT MEDICAL ADVICE, it is merely a select summary of LIFE ADVICE based on my experience.

I decided not to "cope with" nor "put up with" the problems that I was experiencing.  Like you, I sensibly did seek medical advice in the first instance, but when that proved (lets say) fruitless, I doubled-down using my own inherent skills - ie, I'm autistic!

In short, this simply involved me paying VERY careful and concious attention to when, and how, I was feeling at various points in my day.....each and every day.  This sounds like a trite and dumb thing to suggest, but it is actually quite difficult to do, unless you are VERY concious, and "in the moment" when you try to assess your mood, feelings and "generalised health" at any given moment.......in those "self-assessment moments" you need to be aware of the context of your surroundings and activities (a..current b...recently past c...impending.)

It took me MANY months to work out the various triggers and situations that made me feel OK, better or worse.  There is no point in going into the details of my personal findings, because yours WILL be different to mine.

So - my tip - is to pay VERY careful and conscious attention to how you feel at multiple points in the day, over multiple days, weeks and months.  This allowed me to identify clear and distinct "problems" in my life, that I was able to carefully "prune-out" over a period of time, and I found that most/many of my "symptoms" abated.  I discovered that my problems were not medical in nature, but FAR FAR more complicated and nuanced....and when I had come to understand them, I was able to improve my health.

I wish you the best of luck Niblets, on your quest for a happier and healthier disposition.

Yours

Number.

When you are in the thick of it, it's difficult to see the wood for the trees. Alexithymia and masking can make this even more difficult.  Having had time out to reassess, and bring base levels down to a reasonable level, one of my recognised stress markers is the "busy motorway" feeling. This used to be a normal part of life and one which would exponentially make me feel worse. It's never far away, but if I can recognise the cars are going too fast, this tells me I need to slow things down or pull over to the services.

Unknown said:

Discussion and dialogue - here - with real people - has helped massively over the years. More so than discussions with the vast majority of health services and information on official channels

Ditto.

It appears to me that a new "Happy Slappy" dictat/policy has been recently imposed/rolled out for the "Moderation Team."

If we, as the members/users, are finding it intrusive and unpleasant, we should continue to shine a light o. It.

The sqeaky wheels get the grease!

I found this article this morning. I don't know where to out it but thought it'd fit here. I think it'd merit its own thread but i dont have the inclination tp do it. I would also be interested in what JuniperFromGallifrey  thinks....

https://www.bbc.co.uk/news/articles/crmjdm2m4yjo

Sensitivities affect the general population. As I understand it, autists have a more delicate fight or flight response. I suppose I'm saying this article represents what I'm trying to explain below. Things which (as humans not just autistics) we are "used to" are not natural and harming our health. Which could have a stronger impact on people whose brains are wired differently to the general pop.  The example here is sound sensitivity and its impact on health.

Hi Niblets, sorry to hear about your issues.

I haven't had what you are experiencing, but I have neck and shoulder problems which can also sometimes give me headaches, and a physiotherapist taught me exercises that help. Obviously I don't know if this is the case for you, but anxiety can make us tense. So maybe you might want to ask your GP if you could be assessed by a physiotherapist to see if they can help.

I have been in better health since I retired, now that I don't have the stress and sensory input of work, so maybe you could look on this period of unemployment as a benefit - giving you time and space to help your health. I don't know your age or whether you could get disability benefits, but if you are going to need to get another job this could be an opportunity to find something less stressful, or maybe train to do something more interesting. Thinking positively is good for us I believe.

In terms of general health, personally I make sure that I drink enough fluids, eat regularly and get enough sleep. I put my tablet onto blue shade setting so that it doesn't stop me getting to sleep. I also take vitamin D tablets for stronger bones plus immune system support (these are recommended by the NHS for older people like me) and also vitamin C with zinc for immunity. But I would recommend consulting your GP or pharmacist about vitamin supplements, to make sure you take what is right for you.

Hope you feel better soon.

Here's what I would do. This isn't medical advice, just my routine as a grown adult.

1. Make sure I'm hydrated. A pinch of salt in the morning (if I have low blood pressure) and not too much, but enough water + a shot of raw cranberry or half a lemon daily. Hydration is crucial.

2. Given it happens when outdoors, I'm ruling out VOCs.

3. To see if it is stress-induced, seek a private GP for medical advice, inquire about 3 tablets (not a whole pack) of Xanax or the exact same compound. Take only 1/2 while there, waiting 3 days either side of eating grapefruit/pomelo (please consult the GP for this info). IMO - one needs to have enough will power to take a whole box home and only take a few once a month, supplementing with a Reishi-Lion's Mane blend in between. Or just mushroom salad daily and other things which balance this particular problem which peer-reviewed research believes is specific to Autism. I was adverse to it initially. But you couldn't get me to take paracetamol. Once I did more research on what things actually do, I changed my programme.

4. If none of the above, I'd ask my GP about getting checked for migraines.

I've found that a full change in my own diet (Keto-meets-FODMAP) combined with creating a more fluid lifestyle in small significant ways has greatly reduced stress. Now my mind might still go overboard every few months & I'll become accident prone, have difficulty sleeping and 3 does the trick for a while. 

Unknown said:

this forum is exclusively for adults (18+)

unfortunately anyone can purport to be an adult and join, and you don't need to join to read the posts and comments.  The whole world can read what we say

  agree with what you say, I'm fairly new to this forum (recently diagnosed) and got the "rule 6 slap" on one of my first posts, when I didn't really think I was really asking for medical diagnosis. 

We may need a standard disclaimer to any posts & replies so we can continue to support each other with our experiences

Discussion and dialogue - here - with real people - has helped massively over the years. More so than discussions with the vast majority of health services and information on official channels. I have temporarily come out of hiding today as I felt these sorts of interactions still have value. I'm of the mind of "seek forgiveness not permission".  If anyone gets in trouble it's not the end of the world.

One last thing - I don't know if this applies to you, but I'm currently investigating the role of hormones in "women of a certain age" and the personal impact. Maybe this is another angle to consider. Often problems rarely have one cause and can often interact. 

There are a few conditions that are diagnosis of exclusion rather than inclusion, this was how I ended up being diagnosed with fybromyalgia. I've got a diagnosis of osteo arthritis too but xrays show nothing, even though you can hear my bones clicking and making horrible noises, my right knee sounds like a sack of gravel when I put any pressure on it.

My advise would be to go back to the doctor and tell them your symptoms haven't got any better, that you're still in pain and even though the tests have come back negative, that's hardly your fault and could they please try something else.

The only thing I can suggest for nausea is fennel tea which you can buy in supermarkets, it seems really good for nausea caused by all sorts of things from medication, to morning sickness and just general yukkyness.

Thank you. Anxiety/autism suck BIG time.

I'm really grateful for everyone's support here, please don't blame them. Their replies helped. It's my fault, last time I was here the no medical or legal advice rule wasn't a thing...

Sorry for causing any issues with it. It wasn't intentional.

Thank you, much appreciated. Hope I didn't get you in to any trouble and obviously all the apologies under the sun if I did!

Unknown said:

Come to know what overloads you on a fundamental level. Come to understand how SMALL aspects of this can accumulate - big time. Understand that we can experience stress and anxiety for atypical reasons. Consider if it's GAD and/or actually stress from being overloaded.

This! ^

I have no idea about what affects, I struggle to process how I feel and don't really understand what's happening. There is plenty of stress in my life and I try to slow down and focus my thoughts and feelings but it feels near impossible!
My thoughts are like cars on a motorway, fast and noisy, never slow enough to figure them out. That's probably a bad way of describing them but it's how I try to imagine them.

Need to work on all this.

Thank you Number and Overwhelmed and Underwhelmed, I appreciate that.

It concerns me a little that this rule has been put in place. I get why it’s now a rule but at the same time, this forum is exclusively for adults (18+) and I would have thought we should be trusted to ensure we have the common sense to know what advice to follow and what not to follow. Like if someone said to drink acid or do something dangerous, well you just wouldn’t, would you? I never remember anybody coming to any harm last time I was here.

We all know right from wrong and don’t believe any of us would do something that might endanger ourselves. If advice wasn’t good you would surely still say thank you for the member taking time to help out but know that you shouldn’t do what was advised.

Last time I was here I remember many members came here for advice because they were too anxious to visit the GP. One I remember had a swollen tonsil but was too scared to go, and after talking here she eventually went to the GP because people helped her. For some this community was that Cry On The Shoulder and Listening Ear that they needed. It worries me now that those types of autists can no longer come here and share what’s playing on their mind regarding health, be it physical or mental health.

I will be mindful in the future to not post about health concerns, I don’t wish to get in trouble nor get anybody else into trouble either.

Thank you again for replying my NAS friends.

Please do not feel bad for asking a question of your kin and peers here.  Like you say, it was the "bread and butter" content of this place when I first came here......and people helped each other without fear or favour.

I was personally helped and supported ENOMORMOUSLY by other members here when I first arrived.

Dear Niblets (NAS78107), 

I'm sorry to hear you have been struggling with your health. Whilst the Community Members may share personal experiences and offer support, I would like to remind everyone of Rule 6: No medical or legal advice. Do not offer medical or legal advice. Always seek professional help for these matters. Treat any medical or legal information shared as the opinion of the user who posted it and meant for general discussion purposes only. 

All the best,

ChloeMod

Unknown said:

AND SORRY AGAIN FOR ASKING FOR MEDICAL ADVICE

Not a problem, just a disclaimer in case anyone thinks anyone thinks anything I write IS medical advice, and acts upon it without speaking to a professional.   If (we) mention it, we are taking a reasonable precaution that we've warned someone that our experiences aren't to be copied at will.  

Not offering medical advice but personal experience. 

Perpetual overload + unidentified burnout = some sort of chronically fatigued state. CFS isn't well understood by medical professionals. ....autistic fatigue even less so. If you do your research and get to know others' experiences,  you may get answers. 

A neurodivergent friend found she had high levels of cortisol. This is the stress hormone. Stress can lead to fatigue.  I do not know if cortisol levels are tested as routine by the NHS.

Come to know what overloads you on a fundamental level. Come to understand how SMALL aspects of this can accumulate - big time. Understand that we can experience stress and anxiety for atypical reasons. Consider if it's GAD and/or actually stress from being overloaded. They are different things. Come to recognise what your stress markers are. Once you learn to recognise them you come to understand these don't have to be a normal part of every day life. Come to understand what pleases you on a sensory basis which may alleviate the overload.

Thank you all for your kind replies on this matter. I apologise for asking for medical advice, last time I was here it wasn’t against the rules to ask for advice on health related issues. Personally I wish they hadn’t brought in this new rule r.e. health advice as many of us found it a comfort to ask others advice here, still those are the rules now and I will follow them.

Thank you for your help all the same. Sharing your own experiences has helped me and I appreciate your time, your words and your kindness. I think for me it is all down to anxiety. At one point I suffered with social anxiety but over the last couple of years that turned in to GAD “generalized anxiety disorder” and I think this more than anything else is responsible for my health complaints, it never ceases to amaze me how anxiety can manifest itself so deeply that it presents as seemingly serious ailments. I’m always on edge. Always feeling hyper and very stressed, usually along with the symptoms I mentioned, or they tend to appear shortly after the bout of stress.

I’ll be returning to the GP soon as I still get affected by my symptoms regularly and it’s debilitating in so many ways. Even if they can’t fix this I am hoping they can offer some resources on how to cope with the symptoms. Sometimes it’s so bad I just burst in to tears.

I feel better having read your replies and once more, I thank you for taking the time to help.

AND SORRY AGAIN FOR ASKING FOR MEDICAL ADVICE

Yours,
Niblets.

Long before my diagnosis I was back and forth to the GP with seemingly random neurological symptoms. I've had multiple blood tests and scans and all came back negative or inconclusive.

It's incredibly frustrating, at one point the GP said that he didn't doubt that there was something wrong but current medical science couldn't find it, but maybe in the future they'd find something.

I think it's stress related and possibly my yet unconfirmed ADHD. 

I'm foggy, I feel unsteady, suffer migraines and vision issues as well as muscle and joint pain. It's been suggested that I may have ESD which apparently isn't uncommon amongst the ND community.

I've even considered medical cannabis but I'm a little fearful of pursuing it.