Relentless fatigue, weakness, and aching. I feel so done.

[WorryRaptor]

I apologise for the incoming rant, but I need to get all of this down in writing. I'm finding it so hard to accept that all of my problems are being caused by anxiety. I've really tried to stay level headed about everything, but I'm just feeling worse and worse. I know I'm going to sound like a textbook "overthinker" but I'm convinced I have something going on health wise. I'm almost certain it's autoimmune related. That or something neurological and progressive.

The symptoms that bother me most are ones I've spoken about before, and recently, they've become a lot worse.

The main one which really has me worried is sudden waves of intense fatigue. Not sleepiness, tiredness or lack of energy - draining, unrelenting exhaustion as if my life force is leaving me and even breathing is an effort.

When this fatigue happens, it comes on extremely quickly. I could be feeling absolutely amazing one moment, and the next I can barely talk without feeling like I'll pass out from the effort. Nothing triggers it. My blood sugar is perfect at the time. My blood pressure is a lovely 110/75. My oxygen saturation is fine. My heart rate is ticking away at 70. Yet I feel like I'm fading out of existence.

It comes and goes in "waves". Sometimes it will happen for an hour and go away for another three or four weeks. Other times it will happen over a few days and gradually fade away.

It has brought something new with it this time round too - Buzzing, throbbing and aching in my hands and feet. This pain is an easy 7 out of 10 on the pain scale, and nothing helps it. Sometimes the pain quickly gets replaced by a feeling of weakness in my legs and arms, with trembling, heaviness and any movement of those limbs causes a huge wave of exhaustion to crash over me. Again, this can last a short time, or linger for days.

No matter how healthy I eat, calm/hydrated/rested I remain, it always comes back. I can't quite put my finger on an exact pattern, but it follows a similar process to relapsing and remitting diseases. The fact it hits out of the blue, no matter what emotional/health state I am in, really makes me wonder. The obvious things like blood pressure, blood sugar, heart rate, state of mind etc also somewhat rule out the usual suspects.

Recently I was given antibiotics which I reacted terribly to even though I previously had no allergies to this specific medication. I had agonising joint pain, stiffness and I barely ate for three days. I read that autoimmune problems can flare up after a course of antibiotics. I was taken off them, advised never to take those ones again. Then soon after that, I had my second Covid jab, and the horrible joint pain flared up again. It lasted for four days. Because the jab causes an immune reaction, I was seriously suspecting some kind of autoimmune type flare.

I've been to the doctor about all of this, detailing horrendous fatigue, headaches, joint and muscle aching, tingling, paraesthesia, hair loss, and memory problems. I was told, straight to my face that "we sometimes just need to sweep our pain under the carpet, I used to be a hypochondriac too".

I never felt so alone in that moment. I didn't go in with big theories, and I didn't even want pain relief or meds, I just told them I had been suffering with this thing on and off for a long time, and nothing was improving. A paramedic who checked me over recently when I had chest pain thinks I have a neurological issue, or something relapsing and remitting, just from the history she took from me. Yet the GP didn't want to hear a single word of it. They just told me to be less stressed.

I truly wish this was anxiety, because then I could address it.

[Catkins]

Could you address your anxiety and see what happens with your physical symptoms?

[WorryRaptor]

Could you address your anxiety and see what happens with your physical symptoms?

I genuinely feel like I have addressed my anxiety. I've gone to therapy, done CBT, and took "stresses" out of my life yet the physical symptoms are so much worse. The therapist didn't think I had health anxiety after everything we went through. Most of my actual anxiety comes from OCD. I've been doing really well with that too. This just seems like something getting progressively more taxing on my body.

[WorryRaptor]

Just happened again about 40 minutes ago. I was chilling out on the sofa and decided to do some light sketching. All was well. I'm at my most happy when I'm drawing. I moved my arm to reach for another pencil and it felt suddenly clumsy and heavy and so tired. I felt a rush of heat all over like I had a fever. My cheeks flushed hot and I started feeling shaky all over. Legs felt like jelly and my hands were not as dexterous as they normally are. To the point where usual pencil line work looked noticeably less neat. I felt like I might pass out. My speech was a little slower too. Even talking becomes exhausting.

I tried to ignore it, but gradually felt weaker and weaker, and I had to stop drawing. I took my blood pressure, checked my heartrate and made sure I wasn't dehydrated and everything was perfectly normal. My legs are slowly feeling more normal again, but my hands are still "off". Almost like my elbows and shoulders are weak and that travels all the way to my hands.

I've reported this to doctors so many times and they never want to investigate anything beyond taking a routine blood count and telling me to reduce my stress levels.

This isn't normal. I wasn't remotely anxious. I am of course anxious about what this could possibly be, but in general, I am genuinely happy and relaxed seconds before these "episodes" of feeling I'm about to drop at any second. It doesn't follow any pattern. I can be at maximum stress and feel what I recognise as anxiety based symptoms, but they come nothing close to this. It doesn't get better when I distract myself. It doesn't come on during times of stress. It doesn't respond to rest.

I'm at a loss because doctors won't listen and I'm sitting here wondering if it will be something I'm stuck with forever, or if it's something potentially harmful that needs investigating sooner rather than later.

[Kayleighbebs]

i know exactly how you feel i’ve had a good 6 months and then all at once loads of things happened which have set my anxiety off again same as you though i can be doing something relaxing and out of nowhere the fatigue hits me just know you are not alone

[Solarbind]

How are you now? If you are experiencing an escalation of anxiety, talk to a professional who can help you through this difficult time.

[WorryRaptor]

i know exactly how you feel i’ve had a good 6 months and then all at once loads of things happened which have set my anxiety off again same as you though i can be doing something relaxing and out of nowhere the fatigue hits me just know you are not alone

Thank you for your reply :) So sorry you have to go through the same feelings. They're rough!
I can't seem to accept it as anxiety based, but I'm not completely ruling that out either.

[WorryRaptor]

How are you now? If you are experiencing an escalation of anxiety, talk to a professional who can help you through this difficult time.

My energy levels are great now. I don't feel anxious apart from a couple of minor OCD issues, but nothing I don't deal with all the time. It always happens like this. Days or weeks of decent energy, and then a massive, draining crash.

[WorryRaptor]

Just revisiting this with a quick update.

I few mornings ago, I woke with intense pressure on my chest, and my entire left side felt wrong. Painful, then numb, then like hot water was getting poured over my fingers. I tried to ignore it, and carry on with my day, but it just got worse. Then that weakness I described hit me really hard. Tried to power through, and tell myself it would pass.

It got worse and worse during the day until I ended up in hospital. I had been advised to go in after I was finding it hard to even walk up the stairs.

They checked my heart, ran lots of bloods and were happy I wasn't having a cardiac episode or stroke.

I was fully expecting the doctor to tell me I was anxious, but to my surprise, he sat me down and asked me to go through everything from the beginning. When all of this started, how it had progressed, and what my GP had ruled out/ruled in. So I told him everything, and he said it wasn't anxiety, that the symptoms were very real, and he has worked with patients with very similar problems. He said anxiety and stress are certainly playing a part in how I feel when they happen, but there is definitely something going on. He told me it's more than likely my immune system reacting to food. My left side seems to be where it flares up the most when it happens, along with the all over weakness/fatigue, hair loss, rashes and joint pain.

He put me on a strict diet and a routine to follow. As I have family members with autoimmune diseases, he told me I'm likely genetically predisposed to having an autoimmune type response to certain triggers like food and environmental factors. My mum has an autoimmune disease that attacks her digestive system if she eats a certain trigger food, so it makes sense that a gene or two had been passed down to me.

I was both relieved and terrified, relieved that somebody had finally listened, and terrified as autoimmune issues can vary between manageable and well... not so great. I mentioned things like Lupus and MS, but the doctor thought that my issue sounds more reactive and low grade. Obviously my GP will need to run some tests to rule out the major autoimmune diseases, but I trusted this doctor more than any others I'd ever seen. They specialised in this particular issue, so in a way, I was really lucky to end up in hospital that day!

I have to follow this routine to see if anything helps. I have to try and manage my stress response to the symptoms when they do happen, but now that I have a potential answer, that will hopefully be easier to do. I'm slightly scared, because I don't want to it to end up being something like Lupus or MS, but I'm trusting the doctors expertise that it's a less devastating one that I can manage. I'd eat cardboard for the rest of my life if it meant those symptoms going away for good!

[WorryRaptor]

Yet another update. GP is testing me for lots of autoimmune stuff.

[WorryRaptor]

I'm actually kind of worried about it being Addisons disease. The symptoms really fit, but my GP isn't testing for it. To be fair, it was a short appointment and we had a lot of info to work through.
The bouts of unrelenting fatigue are a hallmark sign of Addisons. It's not something I googled, I just know about it as a friend has it and was misdiagnosed with chronic fatigue for years. I never really made the connection until I remembered him talking about it and how he would just crash out of the blue and everything took monumental effort. Finally when his adrenal glands were damaged to the point where his symptoms became a lot more constant, he was sent to a specialist who diagnosed him.

I'm not saying I definitely have this, just that it's a worry in the back of my mind. My GP does think I have something going on that isn't anxiety, but it's been about six years of other doctors telling me I'm anxious, and I'm a little disillusioned by the whole thing. I'm so glad she's listening to me, yet I'm terrified that I'll hit a dead end or be misdiagnosed.

Stress and anxiety can trigger episodes due to low cortisol levels in Addisons. I wonder how many people with this condition were dismissed as "just stressed" when really it was a chicken or egg situation.

[Beckybecks]

I know it's been a month since you posted so I hope you're still on this forum.
I read all your posts with interest as I have had such similar and unexplained episodes.
I've had anxiety for over 25 years now and that includes many panic attacks, health anxiety and phobias. Like you I've done all I could to treat this disorder.

For about 20 years now I've been having random attacks of an "illness" that no doctor could identify. They're happy to diagnose anxiety and yes, I agree that anxiety can cause all sorts of symptoms and damage. But nobody can tell me what's wrong or how to fix it.

I did see a Dr some years back who said it was inflammation due to all the stress hormones activated during panic attacks which flood the system.
I had blood tests done which he said showed adrenal insufficiency. I looked it up to find Addisons. But I don't have all the symptoms so I don't know. I was treated with various vitamins and supplements.
It did ease up but it always comes back.

I find that this strange illness seems to rear its ugly head after I've been through a stressful situation. Where I've probably panicked and released plenty of adreninto my system. About a week or so later, I get ill. Aches and pains, feelings feverish, dizzy or light headed and very weak in my limbs and a feeling I'm shaking inside.

Remember when the solders came back from the middle east war and felt ill and they called it gulf war syndrome. Remember Shell shock from the world war.
Or PTSD from the Vietnam War. I don't think they know enough about this condition.

I was reading your last post and realized that when I'm going through these periods of illness I feel slightly worse after a meal. So I'm really wondering now how all of this is linked, chronic anxiety, adrenal insufficiency, inflammation, food intolerances......

You've been so fortunate to find a doctor to listen and try to help you. Could you possibly share what treatment or diet you've been prescribed and whether or not you've had any success yet?

Thank you.
Becky

[WorryRaptor]

I know it's been a month since you posted so I hope you're still on this forum.
I read all your posts with interest as I have had such similar and unexplained episodes.
I've had anxiety for over 25 years now and that includes many panic attacks, health anxiety and phobias. Like you I've done all I could to treat this disorder.

For about 20 years now I've been having random attacks of an "illness" that no doctor could identify. They're happy to diagnose anxiety and yes, I agree that anxiety can cause all sorts of symptoms and damage. But nobody can tell me what's wrong or how to fix it.

I did see a Dr some years back who said it was inflammation due to all the stress hormones activated during panic attacks which flood the system.
I had blood tests done which he said showed adrenal insufficiency. I looked it up to find Addisons. But I don't have all the symptoms so I don't know. I was treated with various vitamins and supplements.
It did ease up but it always comes back.

I find that this strange illness seems to rear its ugly head after I've been through a stressful situation. Where I've probably panicked and released plenty of adreninto my system. About a week or so later, I get ill. Aches and pains, feelings feverish, dizzy or light headed and very weak in my limbs and a feeling I'm shaking inside.

Remember when the solders came back from the middle east war and felt ill and they called it gulf war syndrome. Remember Shell shock from the world war.
Or PTSD from the Vietnam War. I don't think they know enough about this condition.

I was reading your last post and realized that when I'm going through these periods of illness I feel slightly worse after a meal. So I'm really wondering now how all of this is linked, chronic anxiety, adrenal insufficiency, inflammation, food intolerances......

You've been so fortunate to find a doctor to listen and try to help you. Could you possibly share what treatment or diet you've been prescribed and whether or not you've had any success yet?

Thank you.
Becky

Hi Becky,

Thanks for your reply, and sorry I didn't get to this sooner.

Sorry to hear you're dealing with so much too. It's a horrid feeling isn't it. I really hope you can find some answers, and subsequently, relief from these symptoms.

The past month has been quite a rollercoaster for me health wise, so the jury is still out on some of the things I've been trying. I wish I had a more concrete answer for you, but I'll go through some of the things I really feel made a difference. Sorry if there's a wall of detail, I just try to get everything down in case there's anything that might help!

Firstly, what you say about inflammation is really standing out to me, and I'm actually starting to believe it's the cause of anxiety for many people. So, we're not worrying ourselves into the illness, rather the inflammation is raising anxiety levels and making the illness worse.

The doctor I spoke to about this said for me to blame anxiety would only be plastering over a crack that my system was already struggling with. They explained that the anxiety I'm personally experiencing is just another symptom of an underlying illness. Food, environment, and stressors can cause widespread inflammation in the body and lead to aches, dizziness, digestive problems, and weakness. Stress hormones get released all day, and your body is exhausted by it. So when you go to your doctor with these mystery symptoms that seem to be from all over the body, their first thought is anxiety and they just try to treat that. Yet you still feel sick, and have no answers.

I definitely found an improvement with the diet the doctor put me on. I went completely gluten, dairy and sugar free (apart from natural sugars in fruits etc) and it made a huge difference to my pain levels within about a week. I started feeling more improvements after two weeks. Unfortunately, as my previous GP wanted to test for celiac, I had to go back to standard diet after the third week. Low and behold, the chronic pain returned. However, I tested negative for a gluten allergy (then I discovered many people can test negative if they've previously cut out gluten and it hasn't built up in their system enough to detect) I did however, have high inflammation markers. I was also extremely low in folate and my GP gave me folic acid supplements to get my levels back up.

A very interesting thing happened when I was eating clean, whole foods. My "anxiety" faded tremendously. Not completely, but enough to be noticeable by people around me. I just looked more comfortable in myself if that makes sense. Probably because my pain was lessened, I wasn't dizzy, and those weak spells hadn't happened. Recently, when I started taking folate, I felt a similar reduction in the anxiety. A symptom of low folate can be...anxiety! It can also cause fatigue, muscle weakness, and headaches. It might be worth getting your b12 and folate levels checked by your doctor as a potential cause.

So, in case this helps you, the foods and changes I stuck to were: Gluten free (where possible, but if you tolerate it, don't worry about cutting it out completely, just try to reduce breads and simple carbs like white bread, pasta etc). No processed foods at all. No dairy. Brown rice, lentil pasta and quinoa for slow release carbs. Meat was mostly fish and chicken with some red meat now and then. Lots and lots of leafy greens and salads. Lots of veggies in general. Small amounts of fruit for sugar. Vegetable soups played a big part in what I ate. I added fermented kimchi for good gut bacteria as problems with this can also cause anxiety in the body too. I gave up soda. I made sure to stay hydrated, but I didn't stick to the strict 8 glasses of water a day (that's a myth). I drank when I was thirsty, and I spaced my water evenly throughout the day. I made sure I kept a regular sleep schedule to try and give my body a routine.

This was definitely working. Maybe it wasn't fixing everything, but I 100% felt positive changes and I was improving day by day. My body felt calmer inside, like it had less to struggle with.

Unfortunately I got stopped in my tracks due to a tooth extraction going wrong. They popped the tooth out, the socket refused to heal three times until they put me on really strong antibiotics to prevent a jaw infection, which then landed me in hospital with liver inflammation and tachycardia. So I'm currently slowly getting back to the original plan, while waiting for my body to recover from all of that.

I'll update this thread with some slightly more coherent information when I'm back in track!

I hope some of that was helpful, and if you have any questions, I'd be happy to answer them :)

[BadCompany]

Please give an update
I have a lot of your symptoms plus left side joint pain....very scary

[WorryRaptor]

Please give an update
I have a lot of your symptoms plus left side joint pain....very scary

If you take a look at my reply to Becky earlier, you can read my recent update. Still recovering from the other stuff mentioned, but will update this thread when I have a bit more energy! Hope you feel an improvement in your symptoms soon :hugs:

[WorryRaptor]

I promised to update this, so I will try :)

Changing my diet has helped tremendously with pain levels, migraines and bouts of tachycardia. Unfortunately, the weakness/exhaustion and numbness has stuck around. I created another post about left sided numbness and tingling getting worse recently, but wanted to update here in case anyone is reading.

So doctors are guessing my neurological issues are coming from my neck, namely some kind of pressure on the spinal cord from cysts/growths/discs, or misalignment squishing something or inflaming something. My joints are extremely hypermobile (my ligaments are too stretchy and don't keep everything nice and tight and this runs in my family). They ran an MRI on my head and neck, but instability due to hypermobility doesn't tend to get picked up on a supine scan. I've yet to get the full report from that at my next appointment.

So in short, I'm in a bit of a limbo while they try to figure things out. I'm just getting on with my day, making sure I don't do any heavy lifting or twisting. Oddly, when faced with very real symptoms recognised in a clinical setting, I'm not "anxious". (I lost sensation all down my left side and there was a marked difference when they examined me). I'm trusting the doctors to do what they need to do.

[Scass]

It’s good to see how positive you are being, and that you are making changes for yourself.


Sent from my iPhone using Tapatalk

[WorryRaptor]

It’s good to see how positive you are being, and that you are making changes for yourself.

Thanks Scass :)

[Andermant]

How do you deal with mood swings? I notice in myself that the deterioration of my health makes me frail and apathetic. Well, it's hard to be cheerful when you're sick, but this state remains strong even when the acute pain periods pass. I'm sad because I'm weak and can't function properly. Recently I started reading articles from here https://7goodminutes.com/definitions/emotional-health-definition/. I understand that I can't allow my mental state to deteriorate as much as my physical state.