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

@Mumma02 Not necessarily! A painful lymph node could be anything.

Does anyone know if M.E/CFS can come and go? Even within the same day?

It doesn't come and go. With most chronic conditions there can be some fluctuation, though - but there is pretty much a baseline of feeling awful with ME.

No not yet
Waiting to see neurologist again and see what will happen next

It could be your ferritin levels? I had low ferritin (hb normal) and I honestly thought I was dying through lack of energy. Apparently they should be closer to 70, even if the "normal" range goes down to 20. I've been taking iron tablets for several months and it had made such a difference.
And apparently low ferritin can cause heavy periods, which causes low ferritin and then you've got a vicious circle right there. As my iron levels have come up, my periods have improved (okay, sample size of one there.)

@Notlostjustexploring I have had an identical experience with fatigue and low ferritin (& the heavy periods).

@Notlostjustexploring my ferritin levels have never been higher than 30 (that I am aware of) and have been as low as 9. I have very, very heavy periods since the birth of my second child. My ferritin hasn't been tested since January when it was 21. I would love to think all this was just low ferritin but I feel like it must be something more. 😔

@Mumma02 You need to fix the ferritin otherwise you can't possibly tell.

I have similar symptoms since the AZ vaccine too. I have had so many tests at two hospitals departments and many doctors and they can't come up with a diagnosis. I fell ill two weeks after the first vaccine and am still ill over a year later.

For the thread police, the rheumatologist I saw said it could well be vaccine injury and my GP hasn't ruled it out either.

I'm at my wits end.

Does anyone know if full vitamin and mineral testing for things such as Vitamin B1, B6, Zinc, Copper and iodine etc is available on the NHS? As well as Full Thyroid testing for antibodies before I ask my GP next week? Woke up this morning with my arms sore and aching. So sick of feeling like this. Couldn't sleep until 1am last night as felt really wired despite having felt tired all day!

Yes, full testing can be done on the NHS, but some of the more specific testing for vitamin deficiencies can only be done at a hospital.

Thanks @Innocenta they've never suggested it to me and I've never heard of anyone having it. Just really want to get everything tested before I end up with this horrible diagnosis.

I would definitely fix the ferritin first. I get CFS symptoms when my ferritin is on the low end but since taking an iron tablet a day (with vitamin C), I’m so much better and the fatigue is gone. I have to up it when I get ill (cold/virus etc) as for some reason it gets worse then, but it’s much more manageable. I was surprised how much an impact it had actually.

You may find it quite difficult to get them to do full testing, unfortunately. I totally agree with you that you need to rule other things out before really considering ME (and even then you can't diagnose yourself, it would be a doctor making the diagnosis). But they are so overwhelmed at the moment that they can barely catch up with all the existing waiting lists.  I hate to think how long you might end up waiting for full testing for deficiencies.

I do agree with @Namechangeno25788 that addressing the ferritin should be your number one priority x

That’s a really good point actually- I had to fight for 6 months to get them to even look at anything other than my vitamin D which was the only one out of range when they first tested. Everything else was on the floor but one or two digits above the threshold. Because clearly all bodies know that they can’t possibly have symptoms if you are low but not below the so called magic number 🤨 Even my ferritin was just in range but by process of elimination I’ve worked out it was that that was causing all my symptoms.

But M.E should always be a last resort as it can’t be tested for definitely. Good luck.

@Mumma02 I'm starting to feel more like my normal self after starting 2 iron tablets a day and B vitamin complex. I've not felt dizzy or nauseous for a while now and definitely have more energy. I'm also feeling less anxious and irritable. I managed a few days out with the kids over half term which I don't think I would have managed just a few weeks ago. Definitely look at iron tablets to raise the low ferritin. I've also had my first period since going back on the pill and it was so much lighter and easier to manage. Not constantly flooding like before, so hopefully I'll be able to hang onto some of the iron stores this time!

If your symptoms come and go, have you considered a food sensitivity? I developed sensitivity to gluten, due to the SIBO. It wasn’t obvious, some symptoms came hours/days after eating. I often felt worse during the day, and a bit better in the evening.

as far as I know, testing for sensitivity is not very reliable, but it maybe worth cutting out gluten for two weeks, if it’s not agreeing with you, you will notice the difference in that time. Dairy tends to be another common culprit.

Also, as bacteria have lifecycles, symptoms can be a bit up and down with sibo generally.

@Buttercup72 how do you get tested for SIBO?

Spoke to my surgery this morning and as expected - don't do full vitamin testing. So I am going to have to find somewhere online that does this.

@frozensmoothie @Namechangeno25788 My ferritin was 30 when I was pregnant with my first child and I had absolutely none of these symptoms - so I don't believe this is all down to ferritin for for me. Plus would low ferritin causes twitches, adrenaline rushes, pins and needles/burning in hands and feet etc? I didn't think that it did.

The problem is that you need to fix things that are wrong first before you look for other things. If that makes sense? There probably isn't one perfect explanation for everything / every symptom. No good doctor would diagnose someone with an exclusion diagnosis when you also have untreated deficiencies.

SIBO is meant to be diagnosed by breath test, but the best SIBO doctors actually think it's quite unreliable and will treat based on a clinical diagnosis x

Hi - I used a company called healthpath for sibo test - there will be other options though: Sibo test

There is lots of info online about SIBO and it’s link to fibro/cfs/me, so worth having a look into it. NHS tend to treat it from a bowel/fat malabsorption point of view, rather than wider symptoms but when you have an imbalance the critters take away all the good nutrients you need, which can cause deficiencies and a whole range of symptoms.

Sorting the SIBO and not eating gluten sorted my issue after 7 years. I think it’s worth a try, if it’s not that at least you can score it off the list and try the next one.

@Buttercup72 That site offers a test for leaky gut which is not a medically validated condition. I don't think it's a good idea for OP to spend money on that when she could, if she does have SIBO (which is very far from established), get proper treatment from the NHS x

We will need to agree to differ Innocenta - as much as I admire the NHS, I would still be ill if I had left it to them unfortunately. Once the bloods came back all normal, it’s you’ve got fibro/ME, no point in you coming back.

As I said, I did lots of research before going for the test, very credible places like cedars Sinai have done amazing studies. As for treatment, herbals are over the counter, so, assuming you follow the instructions, like any other tablet, there is no real risks.

Oh, I don't disagree with you that both the waits and the limitations from the NHS can be really frustrating, @Buttercup72 ! I have also had some awful periods of neglect and poor care. I know how bad it can be, believe me. All I am saying is that OP needs to be careful where she spends her money. I am not against supplementing the NHS with private care - unfortunately these days it's often the only way. But unless very well off one has to be judicious in how to use the money.

I have similar symptoms OP but no pains. It's like wading through treacle with my gp but I have been reffered to neuro who ruled out MS but discovered spine degeneration. Then onto rheumatologist and I had some autoimmune tests ( that seem to be lost I must chase them up). Rheumatologist said I need to be reffered to cronic fatigue clinic but my gp point blank refused it and after sitting crying in his surgery he said he wont reffer me on to anyone unless I start taking more serious antidepressants which I dont want to do. I'm in two minds about getting them as that's the hoop I have to jump through but as a scientist I see the body as a system and want to find and treat the cause not the symptoms.

@Mumma02

I have very similar symptoms to you following covid… it’s all very tedious, (minus the nausea/bloating/pulsing ear/fainting, and prob less pins and needles than you describe.)

can you be diagnosed with fibro WITHOUT pain?

Can you have SIBO without digestive issues? My B12 is at the top end of the range.

Most days I’m just tired of trying to figure out what is driving the PEM and the ever changing cascade of symptoms as well as the ever present ones.