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]

Forgot to add breathlessness/air hunger that comes and goes in spells too!

[Justalittlebitfurther]

Have you had Covid? I have Long Covid and have had similar symptoms since December 2020.

[Mumma02]

Cold hands and feet is another! And sometimes a hot flush but hormone test all ok too.

[Mumma02]

Yes @Justalittlebitfurther but not until October 2021 and symptoms definitely ramped up (particularly the tachycardia) but these symptoms started before then.

[DeedIDo]

In answer to your question, probably not.

Although your GP may think your bloods are 'normal' what he probably means is that they have come back within the reference ranges, which does not mean they are at optimal levels.

You are iron deficient for a start off so that may well account for some of your symptoms. Anything under 30 is clear evidence of deficiency according to the NHS protocol and a good ferritin level is about half way through the reference range.

Your vitamin D is about half way to where it needs to be. Keep supplementing. if you are prone to low vitamin D, as I am, you may need to take a supplement all the time.

Your B12 is too low (needs to be over 500 at least) and your folate needs to be monitored. If it has been low before, it can be low again and you may need to take a supplement regularly.

Your TSH result tells you nothing about the state of your thyroid. TSH is a pituitary hormone and if there is a disconnect between pituitary and thyroid you can be very unwell indeed, but it will never be picked up by standard NHS testing.

How do I know this? Because ten years ago I was you. All sorted now, thankfully.

[Justalittlebitfurther]

I agree with @DeedIDo I became really unwell again earlier this year after having been unwell with LC. I had been VitD deficient prior to getting covid but then when I became unwell this year it was due to very low B12 and ferritin. Since taking supplements I am feeling much better than I was although I do still have LC symptoms.

[Mumma02]

@DeedIDo thank you SO much for your reply. Can ask what you were actually diagnosed with? All my GP says is that my bloods come back "well within range" - but these symptoms plague me and I'm fed up of feeling ok one day only for everything to return and then some. I was perfectly healthy with no problems until after the birth of my second child at the end of 2019 but things really ramped up in December 2020 with a whole host of new symptoms sincd covid. I have no ide what further help to seek?

[frozensmoothie]

I am feeling exactly the same. My ferritin is 6.8, B12 310, TSH 1.3 and Folate 13. My GP also says all is normal other than the ferritin, but as HB levels are normal, they've not recommend I do anything. I've put myself back on iron tablets, vit D and B vitamins and also started taking the pill to control heavy periods. I'm hoping it helps as I feel awful. I have a 3 and 6 year old and feel like I'm wading through mud and barely functioning to be able to look after them at the moment. This has been going on for over a year and I'm also concerned about ME/CFS. You have my sympathy!!

[DeedIDo]

@Mumma02, I diagnosed myself in the end with the help of the good people on the ThyroidUK forum. I fixed my vitamin deficiencies myself. That was really out of the scope of my GP. The iron took longer because the GP, and a haematologist wouldn't support me and iron tablets caused me real digestive problems. The underlying issue though was secondary hypothyroidism, probably caused by the Epstein Barr virus (I'd had glandular fever twice), which was not acknowledged at all by the NHS, who diagnosed me with CFS/ME and offered no support whatsoever.

I persuaded a GP to give me some thyroxine, took the first dose and woke up the next morning a different person. That was nine years ago and I have gone from an obese, exhausted, brain-fogged person in all over pain, who couldn't sit unsupported to someone with a normal BMI and a very active pain and fatigue free life.

@frozensmoothie you've made a good start there. Good luck!

[Willdoitlater]

I think your symptoms do look like ME. But absolutely everything else has to have been ruled out before you should accept that as a firm diagnosis. In the meantime, if no other treatments are on offer, could you get started treating it as if you defintely do have ME. Which basically means pacing, pacing, pacing. Never do anything that triggers post-exertional symptom exacerbation. (Which may not come on for a couple of days so keep a diary). Do less than you think you can, in small amounts, with rests in between.

Be a bit careful with thyroxine, because it does help some people with ME whose tests come back 'normal', but others have been harmed.

[Innocenta]

It isn't necessarily ME/CFS. You have deficiencies and when these are in the picture and untreated, a rule out diagnosis like ME can't be made.

I would push to have your low ferritin treated aggressively if I were you.

[Mumma02]

We are literally the same @frozensmoothie, I have a 2 and a 5 year old! I NEED to be functioning normally. Are you feeling any better with the supplements? Have you raised CFS with your GP? I really don't want that diagnosis.

@DeedIDo what supplements did you end up taking and how did you discover the hyopthyroidism? So glad you managed to cure yourself - you give me hope! I really don't want a CFS diagnosis but I do feel tired all the time recently!

@Willdoitlater I am a teacher and when not in school, have a 2 and a 5 year old to look after. I have no idea how people manage to pace themselves with lives like this, it's so hard!

@Innocenta I feel like I'm back to square 1 every month after my period with raising my iron stores. So difficult.

[theyhavenothingbuttheaudacity]

I've been suffering exactly the same since January 2021. Had mri and that was clear, bloods okay. The pins and needles in my feet and legs is awful. Seeing neuro soon so hopefully will have some more answers hope you get some soon too

[Thehawki]

Hi OP some really good advice has been given here for you but I wanted to come in as someone who has had a diagnosis of ME/CFS but has got better after seeing a neurologist. I had 90% of your symptoms aside from the pins and needles and shooting pains you describe. My neurologist diagnosed me with ‘daily persistent silent migraine’ I was getting migraine without (much) pain but with vision disturbance and heaps of fatigue and I was never not having one. All this to say, even if your bloods are normal these symptoms aren’t, so go through every avenue that you can to find another diagnosis. I had to go private to get mine because once the nhs has slapped an ME label on you they’re very unwilling to investigate other things for some reason.

I have heard things are much better these days due to long covid centres being about. So much more research and funding is going into it so perhaps a suggestion to your GP of a referral to a long covid clinic might be quite useful?

[Zpoa]

Had a lot of the same symptoms - turned out it was MS.
Think you need to go back to your GP and ask from an MRI and/or a neuro referral to rule things out.

[Mumma02]

@theyhavenothingbuttheaudacity have you been given any idea about what it could be?

@Thehawki so you didn't actually have M.E/CFS? Are you any better these days? I don't think it's that as I don't have any visual distrubances etc. Fatigue is my biggest issue at the moment.

@Zpoa I had a clear MRI and nerve conduction tests in Jan 2021 so I don't think it's that. Sorry to hear you have it though.

[EatingToast]

I suffered with me/cfs for several years. Your symptoms don't sound anything like mine. Fatigue is a symptom of many, many conditions/illnesses.

[Mumma02]

@EatingToast sorry to hear that. Do you mind telling me what your symptoms were? My aunt was diagnosed with M.E in her 20's but once she had extensive vitamin tests which she had to travel to London for, several infusions later - she was cured. I am wondering if I am going down the same path.

[DeedIDo]

@Mumma02 I ended up taking ferrous fumarate, which was horrendous. Twenty minutes between bowel movements all the time, is just not viable, but it start to raise my iron and menopause finished the job. I was also taking vitamin D softgels - I still take 4,000iu in winter and 2,000 iu in summer and also a sublingual b12, I think1mg and a B complex. I also took an adrenal supplement for some time as well, which helped. That's when I discovered that it was not normal to cry every day for no apparent reason.

The secondary hypothyroidism was discovered by the good people on the Thyroid UK forum, who understood that a TSH that looks good (ie under 2) doesn't necessarily mean you don't have an issue. Mine was paired with very low levels of thyroid hormones because my pituitary was not stimulated to produce enough TSH to stimulate my thyroid to produce better levels.

I dread to think where I would be if I had not been supported by that forum.

[RedDiamond]

@Mumma02 I bookmarked your thread because you have very many of the symptoms I have. I have just been diagnosed with Fibromyalgia by my GP today.

It has taken a long time to get a dx. I have had loads of different blood tests etc to eliminate lots of potential illnesses and today they told me it was Fibromyalgia.

Off now, before I fall asleep, to see what I can find out about it.

[BonnesVacances]

Google post exertional malaise and have a think how long it takes you to recover from overdoing it. PEM is a hallmark of ME. If you don't have that, you don't have ME.

[newbie202020]

My husband has ME/CFS and his symptoms sound exactly the same as yours

[EatingToast]

@Mumma02

@EatingToast sorry to hear that. Do you mind telling me what your symptoms were? My aunt was diagnosed with M.E in her 20's but once she had extensive vitamin tests which she had to travel to London for, several infusions later - she was cured. I am wondering if I am going down the same path.

I think you would be better off speaking to your GP about it. They will know which questions to ask in order to ascertain whether or not a referral is appropriate.

[blingerswinger]

Sorry to hear this OP. Your symptoms are very similar to mine. I have Long Covid.

Long Covid Clinic were fairly useless… I was already meditating. Their sessions were way longer than I had energy for…

My symptoms improved a little with iron supplementation.

You could consider B12 injections? The Nurse at the GP told me that a mid-level B12 like that might be improved as not everyone does well with a B12 at that sort of level.

Infusions could mean that or possibly Vitamin C infusions, though not tried this. I
haven’t read anything to convince me it would work as yet.

She was cured! Well can you ask her what she had maybe?

Also - PACING is your friend.

[blingerswinger]

@Thehawki How did the neurologist help please??

@RedDiamond - fibro… can I ask how your symptoms overlapped with The OPs? My biggest problem is extreme leg weakness.