Unexplained Symptoms

[LarGeth30]

Just wondering if anyone has had any similar experiences to me...

Since 2017 I've been suffering with crippling fatigue and other strange symptoms (sudden and strong muscle spasms, nausea and upset stomach, muscle weakness, shakes, intolerance to cold, IBS, to name a few) but the most unbearable symptom is this awful dizzy/flu feeling 24/7... the only way I can describe it is that feeling you get in your blood when you have a horrible flu and it feels like you're poisoned?

Anyway I've been for blood tests, chest X-rays, ECG tests, blood pressure etc etc but everything is coming back clear. I was seeing a consultant who said it's likely chronic fatigue syndrome, but I haven't improved on any of the medication he has prescribed and I'm beginning to think it's something else.

It's having a huge impact on my daily life as I have no energy to do anything. I just about manage to go to work and then I come home and sleep. I've also gained about 15kg since this started, but im unable to exercise so I would put the weight gain down to that.

I've just turned 30, 171cm and 86kg. No other health conditions and have always been relatively healthy.

Any advice is welcomed!

Have you had your thyroid checked? This sounds very much like what I went through before an under active thyroid was diagnosed. Beware if they have checked your thyroid levels and said they are ‘normal’. A lot of people find that they work better on a narrower normal range than many doctors use. For example a TSH of 1 when some doctors will say anything over 5 is normal. Look it up a bit and ask for another thyroid test and get the actual numbers even if they tell you it’s ‘normal’.

It does sound similar to my DD who has CFS - the fluey feeling is horrible, I have another chronic issue and I get that sometimes and so does she . Have you been referred to the CFS clinic ?

I have ME/CFS with fibro, eds, and a host of other issues.

I'm really sorry, it really does sound like ME/CFS. And the only real path from here is learning about it, learning what you can and can't manage and when, and going through grief and acceptance cycles.

It's not the end of the world and some people can feel much improved for long periods of time. I've had to make lifestyle changes and change my expectations, and also learn to loudly advocate for myself to get what I need.

You will get there.

Lots of similar symptoms to my daughter who was diagnosed with Coeliac disease. Have you been checked?

DH had similar, after a year was diagnosed with sarcoidosis. There is a whole host of rare autoimmune diseases that are tricky to diagnose. Husband got his diagnosis once he asked to have care transferred from local hospital to a specialist clinic at a central London hospital. Not sure where you are but you could do some googling and see if there are any localish hospitals that specialise in autoimmune / fatigue.

Wow thanks everyone for the responses!

Yes I requested a copy of my blood work and my TSH levels are 2.04.
I'm in Ireland so I don't think there is a CFS clinic? I've been paying to go private to see a specialist (allergies, weight loss and fatigue) and he did a full allergy test on my first visit so that ruled out being coeliac.

I've been referred to get an MRI on my brain so waiting to hear about that, and also for the sleep clinic. There's a possibility that there is sleep apnoea too (probably not a cause but definitely not helping the situation).

I've been taking strong doses of Effexor antidepressant and low dose naltrexone as advised by the consultant but I have decided to come off both for a while as the side effects are terrible and I don't feel I'm getting any benefit from them.

I'm not refusing to accept CFS as a diagnosis (a blood relative also has it) I just am surprised that if it is CFS that there are so many harsh physical problems, I honestly feel like I've had 10 pints every day.

Has anyone found supplements that help?

Thanks again xx

Have you ever been bitten by a tick? You may have without even knowing it, but they often leave bullseye marks on the skin. Many symptoms of Lyme disease present as this and you need a specific test to identify it which may explain why the tests you've had haven't picked up on it.

Not to my knowledge, but I'll definitely look into Lyme disease - thank you :)

If I had to put a specific trigger on when the weakness/exhaustion started - it's a toss up between a highly stressful (first) job where I was treated very badly, or beginning to take the depo provera contraceptive injection.

Have you had a B6 test? My B6 got extremely high and I literally felt like I was being poisoned. I was subsequently diagnosed with coeliac disease and my level is reducing as my liver enzymes sort themselves out now the coeliac is being dealt with. I feel loads better too.

Fibromyalgia. It's common in those with IBS who've undergone high levels of stress. Have you had your thyroid antibodies tested? Fibro sufferers quite often have high antibodies. Medichecks do a good thyroid test if you haven't.

Definitely sounds like ME/CFS or Fibromyalgia, I have both & wake up feeling like I haven't been to sleep & my first thought is what hurts today? I have IBS symptoms, tinnitus, raynauds, brain fog, anxiety, depression. My advice to you is don't push yourself, if you want to do something, do 40% of what you think you can do, have a rest & then see if you can do maybe another 10%, then stop. Never plan to do big things two days running, try & arrange things for the middle of the day if you are rubbish in a morning, remember that emotional, memory & concentration are just as tiring as physical things. Sit down to do as much as you can, I sit down to prepare food, peeling & chopping, I find things like having a shower & washing my hair exhausting, so I wash my hair one day & bath or shower the other, I use a towelling robe to save me the effort of getting dry. Look up the spoon theory to understand how to manage your energy levels & accept any help you can or get a cleaner if you can afford it. Once you are sure of your diagnosis look at claiming PIP as the money comes in handy, it isn't means tested & even if it only pays for a cleaner or someone to do the garden it is worth it.

I read of a case in which a very young girl started having similar symptoms, it got even worse,and finally realized they were related to the depo provera injection. Might be worth consider this possibility… you can read about this girl’s experience here (it’s in Spanish)
www.jackierueda.com/depo-provera/