to feel like I could be really unwell?

[feelingrubbish22]

So I don't think i'm actually dying as this feeling has come and gone over a few years, but more recently i've been feeling so unwell, that if I was told I am dying, I don't think i'd be surprised. Its just no quality of life.

I work full time, and I don't even know if I can continue to if I can't sort this out. I worked 8 hours today and felt so spaced out and like I could pass out at times. So tired, and my muscles, in particular my arms, feel like weights, I could barely lift something up onto a shelf. Even standing and walking about I felt off.

I am only in my early 30s, and I know this is isn't right. But doctors keep telling me i'm fine! Blood tests keep coming back 'fine'.

I've tried to explore different routes, taking vitamins, vitamin D, iron tablets from over the counter when my ferritin was low. (its now fine apparently) B12 always been fine. I've had my thyroid tested multiple times and been told 'fine' and tsh is within range. I have however been told my thyroid doesn't 'feel' right when a doctor felt it, and I should be having tests done soon.

I'm also not diabetic, as been tested a few times. I have on couple of occasions had low blood pressure, but more recently when doctors have tested it, its been fine. I've even tried to block out the idea that I feel so ill and just carry on and work through it but that hasn't helped either.

The weird thing is, there are times this comes on and I can feel this way for about a week or two, but then I can have another few weeks where I feel much better, but not at the level of energy I expect I should have. This made me wonder if it could be hormone related? But if so, what? My periods are every month as normal.

When I'm having one of these week long 'episodes', I notice the only things which make me temporarily feel better is to eat sugary foods, and/or take aspirin, paracetamol and caffeine. After a couple of hours though, I'm back to feeling horrendous.

Has anybody got any idea what the heck is wrong with me? At this point I would go private but with the cost of living rising, I really can't afford to!

I'm just miserable.

I'd say Autoimmune issues are a likely culprit. I had the same thing in 2015 in my 30's. I couldn't peg the washing out as arms so heavy and was very dizzy, memory loss, dry mouth and eyes, hands were sore and weak and would go dead randomly. I had extreme fatigue and body aches as well as all sorts of weird symptoms that would come and go. I didn't look ill so nobody took me seriously. Eventually, was referred to a Rheumatologist and they took bloods (ANA -Anti nuclear antibody) which came back as very high so an autoimmune response was happening and my body was attacking it's own tissue. In particular, I had the speckled variety that you see in people with Sjogrens syndome, raynaulds, lupus and scleroderma (mixed. connective tissue disease)
They offered my steroids but I didn't want to take them as was trying to get pregnant at the time (have had 2 children with no complications since). After a year, my body started to sort itself out and I've been in remission since then. I do have flare ups but they are much milder, I rest for a few days and it goes away again.
I hope you get some answers soon and definitely get them to check your ANA. A serious amount of stress prior to the big flare up in 2015 was the trigger for me. Have you had a lot of stress?

Hi everyone, I’m new here I’ve joined as I need some advice. I had my 4th child 3 months ago . She wasn’t planned as I’m now 37 but she was a nice surprise! Anyway I’ve felt ok in myself but literally about an hour ago I woke up absolutely soaking wet with what looked like clear watery substance. No smell, no colour and it wasn’t discharge. It was such an excessive amount that it’s like I full on wee’d myself but it wasn’t urine. It just flooded out of me with no warning whatsoever ( abit like waters breaking, if that makes sense) I’m wondering if any other mums on here has experienced anything similar after given birth a few months prior. Thanks x

I have Fibromyalgia and I feel like this. My fatigue always leaves my arms feeling dead weight and my skin hurts. When I flare I’m dizzy which has led to falls. My first warning sign is a sore throat and laryngitis. There are no blood tests. I printed out list of symptoms and high lighted every one I suffered with and took with me to doctors. I was lucky as it was already on doctors radar and the list just helped her. There are support groups online which can be useful on the down days.

Is there any chance you are periodically dehydrated?
A lot of people don't realise how much you need to drink to be properly hydrated, and dehydration can lead to headaches, fatigue, muscle aches, confusion etc.

Have you been tested for Lyme disease?
vit D levels?

Alternatively, I get what I call ‘period flu’ - when I am on my period or premenstrual, I feel terrible. As if I have the flu. Tired, achy, heavy, crave sugary food, listless, headaches etc. cannot exercise, sleep poorly, need paracetamol frequently etc.
could it be similar?

This has happened to me twice, when I moved to the middle East my go suspected I have hypothyroid and did a weekly test for 6 weeks because I was on the pill and lo and behold it was not only low but my antibodies were over 1000. Second time felt like I couldn't move or think, sweating constantly and anxious to the point I wondered if I was bipolar. He took me off the pill and put me on HRT and within 3 days I was my normal never stopping self. You just need a decent doctor, mine here used to be a UK GP qns says he feels guilty now looking back at the culture of refusing treatment and fobbing people off to meet quotas. He never tells anyone tonsillitis is a virus now he's here, just gives the medicine we need and deserve.

Sticking my head in because this is me too. I am so so unwell, getting worse every day and it’s been going on for years. No doctor will help me and they just say that my blood tests are normal but I suspect they’re not. I honestly feel like I’m dying. I’m not help to you but I’ve seen that there’s a few of us in the same boat so maybe we can check in on each other and see if any of us have any success.

I’ve done a few finger prick blood tests through Thriva this week and am waiting for the results to come back - no idea if they’ll show anything but I was lost as to what else to do.

Just been discharged from Rheumatology who said cfs and I need to be reffered but happy days- my gp said they they never got that letter so cant help me!

@feelingrubbish22, my answer is in response to @IncessantNameChanger comments but the info may be of interest to you so I have tagged you too, hope that’s ok.

@IncessantNameChanger, I know it’s not much help but if you are found to meet the criteria for CFS or the stricter criteria of ME (I have had ME for 23 years, severely now for many years) I would just warn you the NHS ‘CFS/ME clinics’ that you would be referred to can offer little. Due to paucity of biomedical research funding these last few decades into ME there are sadly no biomedical treatments, just medication if needed for symptoms such as sleep problems and pain.

At most a clinic can give some basic management advice on pacing activity due to the cardinal feature of post exertional symptom exacerbation in the illness in which small amounts of exertion - limit varies from patient to patient - rapidly exhaust you and often bring on or increase flu like symptoms and other ME symptoms. Clinics may also be able to provide letters of support for disability benefit claims if appropriate.

It’s still better to have a diagnosis and to ensure issues like under active thyroid, low B12, coeliac disease, other hormone problems have not been missed and could be an alternative and treatable cause of your symptoms.

Incidentally I began thyroid meds in the first year of being ill after seeing an endocrinologist privately who prescribed thyroid meds to those with levels just within labs normal level ranges. I was still far from fully well but my level of functioning improved on the meds and so I hoped that my ill health was due to missed under active thyroid and not ME and I would continue to improve on the thyroid meds. The following six years I didn’t improve further but didn’t get worse and then I deteriorated and have remained at the severe level of ME ever since. Some diagnosed with CFS or ME can be missed under active thyroid but far from all.

Finally, I share the ME ICC criteria and would suggest if the particular constellation of symptoms fit your symptom picture then a ME diagnosis may be a possibility. me-pedia.org/wiki/International_Consensus_Criteria

I would also read England’s NICE guidelines for ‘ME/CFS’ which were finally updated in October 2021. www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management

I realise I didn’t give the direct link to NICE’s ME/CFS guidelines so just adding here www.nice.org.uk/guidance/ng206

What's your family history? Any autoimmune conditions?

Arghhh, I’ve had my blood test results back this morning (and they’re private ones so I can look at the results myself) and they’re all FINE. HOW?? My vitamin D has even gone into the optimal range. Just liver function to wait for now and if that doesn’t show something then I don’t know where to go from here. Advice from the doctor who looked at the test results was to try to up my exercise levels. FFS! I used to run/go to the gym 5 days per week but I’ve been unable to even manage a 2 miles walk for the past 6 months - how am I supposed to do that?? 🙄

Track your menstrual cycle with your energy and mood.

Keep a food diary. If you haven't been tested for coeliac do that before giving up gluten as you need gluten in the diet to show up antibodies.

Have a look at high histamine and low histamine food before adding lots of new stuff to your diet, just something to be aware of, as a lot of healthy foods are high.

Don't dismiss perimenopause. I've read enough stories of women in their 30s being dismissed because they are too young. Fatigue, dizziness, brain fog are common symptoms, as are aches and pains, muscular and joint.

The fluctuations in how well you feel suggest something different is happening at times, whether it's what you're eating or your menstrual cycle. Neither of those might be the root cause but could help you manage symptoms by tracking.

Have you suffered a long period of stress preceding the onset of this? Maybe adrenal fatigue?

I've been like this for years, since about age 26. I'm now 49. I have EDS with a lot of weird additional symptoms, anaemia, problem absorbing B12, issues with sleep, or rather lack of, and an inability to tolerate cold temperatures. But, all of this only started to develop and effect me around aged 26. And that was after I'd been working 7 days a week in a very stressful job. I've always wondered if stress brought on everything (except the EDS) and I'm not certain any GPS take adrenal fatigue seriously, or even know much about it.

@Goodyetalso, have you discussed the possibility of ME/CFS with your GP? All standard tests will come back normal despite often feeling dreadfully ill.

The NICE guideline on ME/CFS identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’). As someone with ME I would point out there are often further symptoms but these are the core symptoms. The guideline says that people with all 4 symptoms that have lasted 3 months or more should be directed to a ME/CFS specialist team to confirm the diagnosis. If this constellation of symptoms resonate then I would ask for a referral to a ME/CFS clinic to rule in or out a diagnosis. If it is ME/CFS then the person must ensure they remain within their energy limits when undertaking activity of any kind due to energy dysfunction/impaired aerobic metabolism. ME is still not taught in medical schools or at most half an hour lecture using the incorrect psycho social paradigm so knowledge amongst GPs is sadly still poor and often incorrect.

As I also said above the NHS ‘CFS/ME clinics’ that you would be referred to can offer little in treatment - there isn’t any - but can diagnose you at least should you have it. There is no treatment due to paucity of biomedical research funding these last few decades into ME just medication if needed for symptoms such as sleep problems and pain.

Link to ME/CFS NICE guidelines www.nice.org.uk/guidance/ng206

All the best.

Finally, I will write out below the full symptom list from ME/CFS NICE guidelines, first the core symptoms then other symptoms that often occur. I hope it makes clear ME/CFS is much more than simply fatigue. A form of long covid is presenting similarly.

All of these symptoms should be present:

Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Post-exertional malaise after activity in which the worsening of symptoms:

is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.

Unrefreshing sleep or sleep disturbance (or both), which may include:

feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.

Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:
orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
neuromuscular symptoms, including twitching and myoclonic jerks
flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
intolerance to alcohol, or to certain foods and chemicals
heightened sensory sensitivities, including to light, sound, touch, taste and smell
pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

From the NICE ME/CFS guidelines: www.nice.org.uk/guidance/ng206

I copied and pasted the ME/CFS symptoms list above and the layout came out badly. Will copy it out again.

All of these symptoms should be present:

1)Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

2)Post-exertional malaise after activity in which the worsening of symptoms:

is often delayed in onset by hours or days
is disproportionate to the activity
has a prolonged recovery time that may last hours, days, weeks or longer.

3)Unrefreshing sleep or sleep disturbance (or both), which may include:
feeling exhausted, feeling flu-like and stiff on waking
broken or shallow sleep, altered sleep pattern or hypersomnia.

4. Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.

Be aware that the following symptoms may also be associated with, but are not exclusive to, ME/CFS:

orthostatic intolerance and autonomic dysfunction, including dizziness,

palpitations, fainting, nausea on standing or sitting upright from a reclining position

temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold

neuromuscular symptoms, including twitching and myoclonic jerks

flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches

intolerance to alcohol, or to certain foods and chemicals

heightened sensory sensitivities, including to light, sound, touch, taste and smell

pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.

From the NICE ME/CFS guidelines: www.nice.org.uk/guidance/ng206

I have fibromyalgia, plus under active thyroid, low B12. Though in theory he second two are medicated and managed (in reality I may need b12 injections however). You sound like me I'm afraid.

Look into M.E (sometimes inaccurately called chronic fatigue syndrome) and fibromyalgia. I have both and my symptoms are very similar.

sugar and aspirin giving a short period of feeling a bit better especially stand out- it’s exactly what I use for pain and fatigue attacks.

Really does sound like Thyroid. Best to get it tested when you have no additional vitamins in your system - some (particularly Biotin) can skew the results .

Have your doctors looked into ME? It's quite a long process to get a diagnosis

I’ve assumed I’ve had ME for the past 25 years (although I am much much worse in recent years) but every single GP I have seen dismisses it and I get the “you’re a hypochondriac” look and the shitty pointed comments (“do you come from a medical background because you are using a lot of medical terminology?”) which I find very rude. I use the correct terminology because I’m relatively well educated and proper to use the correct words for things. It doesn’t mean that I sit at home googling conditions and making up symptoms to match them FFS. So basically, I may well have ME but nobody wants to diagnose it.

If your TSH varies, what has the range been ? I was told that anything over two indicates a thyroid that is struggling. Mine was around 2.5 for ages but I felt really unwell and as you describe. Ask to be tested for antibodies, and if you have them, a trial of thyroxine.
My vitamin D was also very low, do you know what yours is ? Having a few things borderline can really affect you.

Do you know what level your ferritin is? I've found out recently that while mine has been "in range" for all tesrs for the past 12 years, it's actually been too low and counts as an absolute iron deficiency (below 30). Further found out that if you are hypothyroid (as I am - hashimotos) then your ferritin needs to be higher, maybe 80+. So all my results of between 10 and 25 are one of the reasons for never feeling well - the others being my thyroid and I also had low vitamin D. I'm hoping once I get my ferritin higher I will finally feel ok.

@Goodyetalso, I am very sorry to hear that but when it comes to suspected ME I am sadly not surprised. Many GPs still wrongly dismiss or minimise ME. The National Institute for Health and Care Excellence (NICE) ME/CFS guidelines say GPs should after 3 months of symptoms - which you clearly have had - refer a patient with suspected ME/CFS to a NHS specialist ME/CFS team to confirm a diagnosis and provide management advice. I would print the relevant page out (see attached photo) of the guidelines and ask the GP to refer you to a NHS ME/CFS clinic nearest to you. The ME Association provide info on finding the nearest specialist service to you. meassociation.org.uk/nhs-me-cfs-specialist-services/

Yes I did. I had and still do extremely high stress levels due to dealing my SEN childrens local authority.

I saw a rheumatologist but he dismissed me as no pain and no skin conditions. He did order some bloods I must check what they are.

I think I'm ready to get proper private bloods. I was thinking about all of the thyriod ones and cushings as I have swelling and weight gain.

I'm really tempted to go on diet now for two weeks to see if it's even possible for me to loose weight. I have started the gym and I'm still gaining weight