Flares of fatigue and brain fog

[BestWatcherInTheUnit]

For about the past three years I’ve been experiencing flare-ups of fatigue and brain fog, and it feels like they’re getting worse.

It’s starting to really affect my life. When I feel “bad”, I need two naps in the day and still can’t concentrate properly. I’m a lawyer, so I need to be able to think fast and usually this is fine. However, when I have these flare ups I make stupid mistakes and take ages to do anything, which makes me worry about holding onto my job. It also makes me very frustrated and bad-tempered. Today I had to take a nap at 11am for 90 minutes because I couldn’t keep my eyes open and then couldn’t concentrate on a simple draft letter which took me all day. I felt like I could have slept all day instead. It also makes me very clumsy - I knock stuff over and misjudge space badly, walk into doorframes etc. It basically makes me feel completely useless.

I also get random pains - there is a particular part of my scalp where I sometimes get a creeping pain that’s hard to define. I tried migraine medication (it is only on one side of my head) but it didn’t help. I also sometimes get random stabbing pains.

I also used to have a really good memory until this started, but now it is terrible. I put that down to having a stressful job and also being reliant on smartphones, Google etc. but I wonder whether there is more to it.

I have Ehlers-Danlos Syndrome, so have been putting it all down to that, but I don’t actually have that many problems with joint pain or the classic symptoms - really the fatigue is the worst and the most frequent thing. The brain fog episodes are less frequent but they are really debilitating.

I would love to know what is causing it so that I can sort it out, I eat well and do a sensible amount of exercise, and am a normal weight. I had full blood tests last December which came back fine except for low vitamin D and slightly high TSH (6.2). I took a vitamin D supplement and tried to have a healthier lifestyle, and in June my TSH was 5 and vitamin D levels were good. I know that fatigue is a symptom of hypothyroidism, but I don’t have ANY other symptoms of that. My hair and skin is fine, as is digestion and periods, and I am naturally slim and don’t find it hard to lose weight. I gained a couple of pounds on holiday in August but it just disappeared when I got home and went back to my normal routine. The doctor said in June that my TSH could be “normal for me” and said I would only need to think about medication if I got other symptoms besides fatigue.

I have an appointment with the GP on Monday to talk about it, but I was wondering if anyone had any advice or ideas about what it might be.

I've absolutely no medical background or knowledge but sounds akin to chronic fatigue syndrome. Have you heard of it/ do you think the symptoms match?

Could it be POTS?
It’s linked to EDS.
Causes major brain fog, tiredness jittery feeling. I am looking into it for myself too as I have left similar symptoms.

I have EDS too- hypermobility type. It can cause brain fog and fatigue, they are listed as symptoms and are frequently discussed on the EDS Facebook groups.

Are you under a decent Rheumatologist?

Do you have any Postural Orthostatic Tachycardia symptoms? I have this along EDS and it makes me exhausted.

Thanks for the responses.

@ZigZaggyZoo I have heard of CFS and the symptoms do fit very closely, except that I have definite "crashes" rather than feeling the same all the time. Sometimes I am fine but I would say about 50% of the time I am not...

@Meanameicallmyself20 @Twilightstarbright I have heard of POTS and wondered if it could be that. However, I don't really faint and apparently one of the diagnostic tests is whether your heartbeat goes up by 30bpm within 10 minutes of standing. Mine does go up, but not that much I don't think. I do have bad circulation though - my hands and feet are always cold and I get quite bad blood pooling. I also have Reynaud's. I am not under a Rheumatologist. I just got diagnosed and told to do Pilates.

I manage the pain pretty well which makes me think my EDS is not that bad, and these symptoms are caused by something else

Everytime I type I lose my reply! I think you need a referral to a Rheumatologist and Cardiologist to look at the EDS and POTS.

Hypermobile EDS
People with hEDS may have:

joint hypermobility
loose, unstable joints that dislocate easily
joint pain and clicking joints
extreme tiredness (fatigue)
skin that bruises easily
digestive problems, such as heartburn and constipation
dizziness and an increased heart rate after standing up
problems with internal organs, such as mitral valve prolapse or organ prolapse
problems with bladder control (stress incontinence)

Symptoms of hypermobile EDS from the NHS.
Raynaud's is autoimmune so again one for a rheumatologist. You deserve more than to be told you're bendy and to do Pilates if you are still suffering!

I have Fibromyalgia and your symptoms sound like it could possible be that. Especially brain fog, random pains, fatigue & it's linked to autoimmune illness.

Hi, I didn’t think my heart rate went up by that much but on checking it consistently it turns out it goes go up by over 30 bpm.
Worth looking into it IMO as your symptoms sound suggestive of pots, plus the link from Eds.
Also a friend with eds and pots tells me that being close to fainting is also a symptom as well as fainting too. Good luck x

I have fibromyalgia. The symptoms sound similar to mine. My symptoms increase and the brain fog increases dramatically during periods of high stress. I have no medical background but can recommend looking into it.

It is an illness that has periods of feeling fine and normal, then months of symptoms as you described. It is worth looking at a few sources as some people don't believe in Fibromyalgia. Some people think it is a mental health condition as opposed to a physical condition. There is lots of research as it is a relatively new diagnosed condition. Symptoms include fatigue, sleep, memory and mood issues. Fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.

Hope this helps.

Thanks everyone. I have looked into fibromyalgia, but it seems a bit of a hopeless prognosis and the narrative is very much that it's all very difficult and you can't expect to do very much about it.

But in particular, chronic pain is not my most troubling symptom. The worst thing is the cognitive problems, which have definitely come on in the past 3 - 4 years, and also motor function being dodgy sometimes plus fatigue. I am wondering whether to ask my doctor about tests for MS...

How old are you op ?

@ihatethecold I am 33. The fatigue flares started when I was about 29 and the proper cognitive dysfunction (forgetting words, names, not being able to link things together) when I was about 31, although that's in fits and starts, not constant.

I had an MRI 3 years ago after having really bad pain in my neck and it found 3 slipped discs and some osteoarthritis. I don't know whether tha has anything to do with the symptoms (except the obvious neck pain/stiffness which I do get).

I only ask because lots of your symptoms can also be linked to being peri menopausal.
Brain fog, joint and muscle pain and becoming very forgetful with words plus lots more.
Have your hormone levels ever been checked.
Being deficient in oestrogen causes mayhem.

@ihatethecold No, I haven't had my hormone levels checked specifically (although I have booked a full blood panel which I think will include it). But everything else that might be hormone-related seems normal (e.g. periods). No family history of early menopause.

They won’t check your hormones unless it’s specifically asked for.
Gps can be very dismissive of early menopause symptoms.
I’m not saying this is the issue but it may be worth considering.

Have you tried supplements? I find a good b vitamin helps on a low energy day. Also beetroot supplements , they contain nitrates which help open blood vessels and increase blood flow to brain. I have a lot of neck tension. I felt great when I took one.

I have symptoms like yours and have hypothyroidism eds and vasculitis. I'd ask to see a rheum and get bloods repeated- inc full thyroid as they normally only test TSH, b vitamin deficiency can cause brain fog and head pains so worth rechecking, as can ferritin and folate deficiency so get these checked again too.

With a TSH of 6.2 I'd be suspicious of hypothyroidism. I was finally started on thyroxine with a TSH a bit lower than that, after years of slow deterioration. My worst symptoms were fatigue and brain fog.

I used to go through phases where I felt more or less ok, then weeks where I was exhausted and could barely concentrate enough to deal with emails - I'm a statistican /data scientist, so I need my brain to function!

One thing I asked the GP for, which finally convinced them to treat me, was a test for anti thyroid antibodies. Most cases of hypothyroidism are autoimmune in this country, so if you have the antibodies that adds weight to it being thyroid related, as it shows your immune system is attacking your thyroid.

I also have some kind of connective tissue disorder. Not EDS, it meets the clinical criteria for a similar syndrome but extensive genetic tests couldn't find the cause, so it remains undiagnosed. It can be hard to unpick the cause when you have multiple conditions with overlapping symptoms, but I definitely feel a lot better after treatment for hypothyroidism.

Also, re thyroid function bloods, make sure you have these taken first thing in the morning for a true TSH reading.

Perimenopause

I have all those symptoms including the head pain and Vitamin D deficiency and was diagnosed with Fibromyalgia. I'm not convinced that's actually what it is but after four years of investigation with inconclusive results that's what I was told.

These symptoms are all typical of the perimenopause but you are you g for this, so although not impossible, unlikely especially if your periods are very regular.

The other thing could be that you have a mental overload that means you are getting little deep sleep. It's amazing how you can sleep from 10 to 7am without waking up but almost all of it being light sleep. This would cause all your symptoms too and mess up your hormones.

Have you tried meditation and relaxation?

I would be surprised if it was perimenopause, as my periods are and have always been very regular and I haven’t had any of the other symptoms that come up when you Google it.

I had my thyroid tested before and I did have the antibodies, but my GP (private through work) said the numbers were low and that she didn’t want to give me medication because she was worried it would make the thyroid overactive and that I would feel worse.

I take supplements, including a TTC vitamin Tablet as we are supposed to be trying for a baby soon. Also vitamin D to stop me going deficient again and vitamin C

Hi OP. A close friend of mine has EDS. She is in her 60s and has all the symptoms you have. She is often forced to have naps in the day and is also a bit clumsy. She often comments about stabbing pains too.

Do you trip quite a bit when you walk? Do you get lots of blisters on your feet? Do you have to eat your food slowly? These are a few of the other day-to-day problems she mentions.

B12 and lots of Vit D3 sorted it for me.

Your TSH is too high. Have they tested for thyroid antibodies ? Because it sounds like you have Hashimoto’s ( auto-immune underactive thyroid).
Typical to also have low vitamin D.
If they didn’t test antibodies, ask for a test now. If you have antibodies then you need to go on thyroxine to get your TSH to around 1, (0.5 to 1 is when most people with active thyroid disease feel a bit better) .
What were your T4 and T3 levels like ?