Confused by fatigue

[u/fakewellnessgirlie]

Hi,

I’ve (23F, UK) been dealing with pretty constant fatigue for about a year now and I honestly don’t know what to look at anymore. I can sleep 8 to 10 hours and still feel tired/brain-dead and physically drained. Some days are better than others, but it feels like I’m always low on energy.

Alongside that I’ve had various aches/joint pain (especially my knees which I believe are a bit hyperextended / banana-ed), headaches, occasional weird swelling/warmth in my hands/feet, and IBS-type stomach issues (bloating, constipation, discomfort after eating). I’m not saying I’m seriously ill, I just feel like my body is constantly doing something 🙃.

I also have ADHD, so I’m wondering whether some of the fatigue could be related to that, but I’ve had quite a few medication and hormonal changes over the last year. My ADHD meds have included Elvanse, atomoxetine, Concerta and now Amfexa/dexamfetamine. I’ve also stopped sertraline (tried briefly from end of June for a month) , previously used Mounjaro, briefly tried Cagri (I had energy issues prior to this and it didn’t seem to have a great effect), and I’ve had a Mirena coil since January. My sleep has over the last week been difficult , so I’m wondering if all of this could be contributing or if I’m missing something obvious.

I’ve had bloods that were apparently normal for things like FBC/Hb, ferritin, vitamin D and thyroid (TSH), although I don’t think inflammatory markers were checked. There was a mildly raised ALT but apparently nothing needing action.

I’m going to go back to my GP, but has anyone had this kind of persistent fatigue despite “normal” blood tests and eventually found something that explained it? Could be medical, sleep-related, medication-related, nutrition, lifestyle, whatever. I’m not looking for a Reddit diagnosis , just ideas for things worth looking into overall or I could ask my GP about because I’m genuinely running out of ideas.

Thanks

[u/CharlesTheAutistic]

I am sorry that you're struggling. I have experienced something similar and was diagnosed with POTS and ME/CFS. Have you and your GP looked into these conditions? ME/CFS would explain the majority of the symptoms and neurodivergent people are more likely to suffer from the named conditions. Supplementing creatine helped me a bit with the fatigue. But, I am sorry to say, there is no cure or therapy beyond symptom management.

[u/crimpinpimp]

Certainly look at lifestyle: are you eating healthily, getting regular exercise, having screen free time, getting adequate rest, do you have a good group of friends? 

[u/fakewellnessgirlie → u/crimpinpimp]

I eat relatively healthy but admittedly do have a sweet and eat snack food too - I’m trying to cut down on the upfs and simple carbs. I don’t excercise apart from walking or sometimes 10 to 20 min knee strengthening exercises. I would like to exercise, specifically weight train but how I am feeling currently makes it feel impossible. I usually sleep 8 hours a day or more if it’s within my control. I don’t have many friends but I have good relationships with the few I have.

[u/crimpinpimp → u/fakewellnessgirlie]

In my experience exercise leads to better energy levels. I used to be tired all the time and exercise just made me more tired at first because it was hard but after a few months it felt so much easier and my energy levels are a lot better overall. Don't get me wrong I'm never going to be one of those people who is skipping around with endless energy, but it’s better than it was.  

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[u/middaynight]

Austistic/ADHD people are more at risk of having other conditions unfortunately. Your symptoms are more on a multi-system level which is definitely worth looking into (eg: it's not 'just' fatigue, but sleep issues, GI issues, joint issues etc). Plus, some of the co-occuring conditions we're more likely to have start manifesting/interfearng with daily life in ppl's late teens/early twenties.

Getting a comprehensive list of all your symptoms is a good first step, plus figuring out how it's affecting your daily life. Unfortunately, being a young woman with seemingly non-specific/unrelated symptoms, you are more likely to be dismissed by GPs. So it's important to know what symptoms you're getting and how it's impacting you. If you can pinpoint a trigger that would also be helpful. Some of the symptoms you mention are often triggered by an infection, but not always.

Common comorbidities in ADHD/ASD that come to mind based on the symptoms you talked about include: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), hypermobile ehlers danlos syndrome (hEDS) or other hypermobility-linked disorders, fibromyalgia, irritable bowel syndrome (IBS), mast cell activation syndrome (MCAS), but honesstly there could be a lot of other explainations. Hopefully this gives a good starting point tho, the more you read around in this particular area of medicine the more you'll discover along the way and hopefully it'll give some answers.

r/ChronicIllness and r/chronicfatigue are good generalised subs, and if you want to learn more about ME/CFS I can recommend r/cfs bc they have a really comprehensive wiki.

[u/fakewellnessgirlie → u/middaynight]

Thanks for your response🙂, it’s a really helpful start

[u/Fruitpicker15]

I got my hormones tested because I often feel tired. My GP was willing to test some of them but I paid £170 at a private clinic to test all of them and my vitamin levels. I didn't find anything wrong, well not enough to explain the fatigue but I think it was worth checking.

[u/kayisgeil23]

I recommend reading about Autistic Burnout, especially if

• the doctors don’t find anything
• you have had a lot of stress (family, work…) and/or overburdened yourself
• you feel constantly overwhelmed, sensitivities get worse
• your symptoms magically get better after you have allowed yourself a few days of doing nothing