Is this M.E/CFS?

[Mumma02]

Had a whole host of symptoms that wax and wane since December 2020. They have included;
Pins and needles in arms/feet/legs. Now also burning feet and sometimee hands.
Fatigue
Brain fog/feeling spaced out
Headaches
Weakness in arms/legs
One occassion of electric shock pain down both arms and a feeling of carpal tunnel in wrists which lasted a couple of weeks and disappeared.
Feeling faint
Palpitations/tachycardia episodes
Adrenaline rushes
Internal tremors/vibrations that can wake me at night.

Pulsing in right ear
Bouts of nausea
Daily bloating episodes
Given a brief diagnosis of autonomic dysfunction in January based on sit to stand test - but not confirmed POTs.

There are probably more! This week I have been VERY tired and my eyes feel very heavy. My aunt had M.E in her 20s and I'm worried this all points to this? I'm 33.

Appreciate any stories or insights about what the heck is going on with me. GP's say bloods are normal!

Ferritin - 21
Vit D - 69 (have been supplementing)
B12 - 419
Folate - 17.1 (up from 2.1 with supplements - have since stopped)
Thyroid - 1.38

Peri menopause?

@IncessantNameChanger that's so awful! What symptoms do you have? So the Rheumatologist thinks you have CFS but your GP disagrees? Do your symptoms come and go?

@freshstarters SIBO is an intestinal condition by definition. There are pseudoscientific claims that you can have it without any GI symptoms, but that's not supported within evidence based medicine x

@freshstarters SIBO is commonly misdiagnosed as IBS, and can cause constipation or the runs. As far as I know, they believe have not everyone gets digestive issues, but not sure how common that is really.

if I were you I certainly wouldn’t get a test, but taking probiotics or drinking a shot of kefir everyday for a few weeks might be worth a try?

@Buttercup72 SIBO is a digestive issue!

I have crushing tiredness. I was diagnosed with sleep apnea at the start of the pandemic but I had to push for over 7 years with various gps at my surgery. I only got reffered via a third party ( I could go to gp with limb hanging off they wouldnt take me seriously). I'm on cpap for the apnea. I could sleep for 12 hours, get up for a wee and sleep again for another 12 hours. I can fall asleep whatever the time if I lay down.

I have burning muscles on any light exercise but that's improved since I joined the gym.

Breathless even going up the stairs.

Swelling in my ankles, face, hands and wrists.

Numbness in my hands on waking ( think this carpal tunnel)

I also had vibration in my thigh on flexing my neck but think that was due to spine degeneration irritation on a nerve.

It's the crushing tiredness and also i feel weepy and anxious ( that might be hormones but I'm still ovulating so it seems not).

Unless i take the anti depressants and throw them away for six months I'm at the end of the road with my gp.

I have four kids and one is severely affected by his ASD so in my gps eyes everything is due to that, which is BS. He is 10. Why would I suddenly swell up putting on two stone in water and feel crushing tiredness after 10 years of parenting him.

I think maybe its autoimmune or allergy or something but I need the mental energy to start private tests.

I have checked my blood sugars and even did a home glocose challenge test yesterday! Wired I feel worse at 4pm -6pm so also trying to have lunch nearer to 4.

Sometimes randomly I get really gassy and have the runs but been tested for celiac and theres no pattern. Its sporadic every two weeks or so. Not a bug or anything like that.

@IncessantNameChanger 100% go private, but to a proper consultant not a testing service x

@IncessantNameChanger that sounds afwul! I can't believe they won't offer any more help. Have they said what the swelling could be? My tiredness isn't like that - I can always power through and have spells when it's not there. Still don't know what is going on!

At first the gp said it was idiopathic ( no reason for it) now the same gp is saying angioedema ( because of an unknown allergy) I take 7 different antihistamines a day for it but no way to investigate what I might be allergic too.

My ankles feel slightly less puffy but it's made zero difference to swelling on my face ( really bad around my eyes when I wake up).

I have thought about doing a food exclusion diet but I need to get myself organised which is hard when your constantly exhasted

Just thought that I would give everyone an update after being so helpful. My fatigue sort of lifted after over a week of the constant tiredness. I was able to walk 4.5 miles and go shopping the day after without it being a struggle - I don't think i could do this if I had CFS? However these waves of fatigue do still appear. I've noticed that my blood pressure is running lower than usual over the last 6 months. 90s over 60s which I know is still considered normal, but not for me. I've always been a 120s over 70/80 kind of girl. Unsure if this has any significance. I also had a negative intrinsic factor B12 result but still waiting on updated folate/ferritin result. I've even looked in yo something called Sheehan's syndrome which can occur after loosing a lot of blood and blood pressure dropping during labour - both of which happened to me. This effectively damages the pituitary gland and can cause a whole host of symptoms. So basically, something is still up, I still have no ide what. But I hope to find out one day so I can get back to living life as I should!

I wouldn't rule out ME/CFS. I certainly have periods - sometimes for weeks - where I feel well. It's incredibly important to learn about pacing (I know this was mentioned above) especially as recovery is apparently much more common in the first two years of the condition... so good pacing early on could contribute to this. I hope you stay well and find some answers.

thats good news op. I had my bloods back from Rheumatology and although my vitamin D was still near the low side (38) the consultant has asked that I go vit d supplements with a repeat bold test in 12 weeks. How is your vitamin D? I’m also going bear arms in the sun if out for walk. I’m normally slathered in factor 50

@maskersanonymous can I ask what symptoms you had and how you were diagnosed? So would you say you have periods of remission and then relapse again with it? @IncessantNameChanger that is low for Vit D isn't it? Hopefully you will start to feel better after supplementing!

I'm pleased that you have found Sheehan's Syndrome OP. I have a friend who clearly has this from her history, but who is saddled with a diagnosis of depression and fibromyalgia and was medically retired in her 40s. Your task now is to find someone in the medical establishment who has also heard of it!

We have now come full circle from my original response saying that your thyroid bloods indicated (to me at least) a level of pituitary dysfunction. Had you mentioned your blood loss in labour in your original post, I would have suggested looking at Sheehan's then.

In an ideal world, your GP would now refer you for a pituitary scan. I would certainly give it a try.

@DeedIDo I feel like I'm on to a loosing battle before I even begin. Did your friend get the Sheehan's diagnosis? I have had a clear brain MRI but there was mention of a partial empty sella which I know can link to Sheehan's too. My symptoms seem to come and go so it's hard to know what's going on.

No, she didn't. She's stuck with diagnoses of depression and fibromyalgia, but her medical history is classic for Sheehan's and her blood results seem to bear this out.

You definitely need someone who knows about the pituitary to take a look at you.

@DeedIDo do you know what her symptoms are? Can she not find an endocringologist to help? I'm not sure how rare this is. Why do some women lose blood during labour and nothing happens to them vs Sheehan's?

Her symptoms? Classic for low thyroid: pain, low mood, weight gain, fatigue ... sound familiar?

The internet tells me that Sheehan's is occurs in one out of 100,000 births globally and is more common in developing countries.

You need to do some research and go back to your doctor, but with your history and your scan result, this is unlikely to be CFS/ME and you should not allow yourself to be fobbed off with that diagnosis when you actually need replacement hormones.

Just wanted to give a further update. Had more blood tests back today and I am now actually anemic - not just low in iron. My transferrin saturation is now practically non existent which shows how little oxygen is actually getting in to my cells too. This could well explain the breathlessness, chronic fatigue, tachycardia episodes etc - this hasn't been tested since last summer!!

Thanks for the update. What test was this? Ferritin or something else? What happens next?

@IncessantNameChanger my actual iron levels plus ferritin, transferrin saturation etc. My iron is 8 and ferritin 25. Just starting my period so I know this will drop again. I've had no luck with supplements for over 2 years and I believe because I've been chronically low for so long, it's caused a whole host of symptoms in my body.