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

@blingerswinger I have no power in my arms and legs at times if I over do things. Tonight I am in agony. My hands hurt, my arms hurt, my legs hurt and when I say hurt, they burn. I have extreme breathlessness. Sometimes I can hardly walk from my car to the front door with my handbag, it is all too much.

The others similar to the OP are:
Pins and needles in arms/feet/legs. Now also burning feet and sometimes hands.
Fatigue - extreme exhaustion
Brain fog/feeling spaced out
Weakness in arms/legs
Feeling faint
Palpitations/tachycardia episodes
Adrenaline rushes - then I do too much as I think I am alright!!
Internal tremors/vibrations that can wake me at night.
Bouts of nausea
Daily bloating episodes

@blingerswinger The neurologist prescribed me with preventative medications. It took over a year to find the right medication for me, some sent me loopy and some made me gain weight too much or made me dizzy. I ended up on a medication which was a last resort before Botox injections called candesartan. It’s normally used for high blood pressure. He described it as opening up the blood vessels to make it so my brain could get more blood and would therefore get less migraines. I have no idea how scientifically accurate that is or how accurate my recollection is either though.

@Mumma02 I’m much better these days but still not 100%. I would still be housebound without the neurologist diagnosing me, I now run a small business and have a dog that needs walking twice a day. My life before going to the neurologist was hellish, disbelieved by doctors and told it was depression, I was too fatigued to stand up for more than five seconds or walk up my stairs. Neurologist told me that was POTS that was caused by my migraines.

I really hope you can find some relief OP. Keep pushing for more tests, don’t let them label you with M.E until you’re certain it fits.

Oh also wanted to add that my vision disturbance was nothing like the classic ‘flashing lights’ other people get. It just a small amount of blurred vision.

Thanks for your input everyone. The only symptom I have had this week has been the fatigue but I have still managed days out etc with my children - just get these very long spells of feeling very tired for most of the day with heavy eyes - but I push through. I never have time to nap/pace! I feel like I have a lot of fibro symptoms - but not the widespread pain which is the most common feature. Something is definitely going on with my nervous system - I just don't knoe what. Feel for everyone going through/has been through something similar.

Definitely seek more thorough testing and treatment for your deficiencies. Vitamin and mineral deficiencies alone can cause a host of symptoms.

@Innocenta I don't know where to start. My 9am cortisol level also came back as 297 which was marked as normal but from reading should be at least 400. So I'm not sure if that's adding to my problems too. I'm a mess!

Have a look at Mast Cell Activation Syndrome. It's much more common than medical professionals think.

This Dr on Twitter recently had a thread on it.

twitter.com/drclairetaylor/status/1531397586283806721?s=21&t=5k66ZnwIzsy8I5PXR0OeFQ

Unfortunately with ME it doesn't care if you have time or inclination. Pacing has to become your priority. We don't do it because it's convenient or we want to, it's because without it we become very very poorly. You start cutting out your 'pleasures' in order to save your necessities and then if you are unlucky you cut out your necessities too.

@BonnesVacances I have mast cell activation syndrome and it's really not something anyone can decide they have based off non specific symptoms or a Twitter thread. It's also not definitively the case that it's more common than previously thought - there's a lot of medical politics around that!

Hence why I signposted it as "Have a look at..." rather than saying that's what OP had.

We have been told by my DD's MCAS consultant that it's much more common than most medical professionals think, especially since Covid. So just going on his expert words, not some random on Twitter or MN. HTH.

@BonnesVacances Exactly what I'm talking about re: medical politics. Please be wary of pushing MCAS onto people, it's a very 'trendy' diagnosis and there are lots of problems around these when they become popular. Of course some people do genuinely have it (like me!), but it's important to be careful about not accidentally 'promoting' a condition. Doctors aren't immune from engaging in this; actually quite the opposite!

Trendy!? Ok thread police!

Many of the symptoms OP has listed do appear in MCAS and are co-morbid with ME and dysautonomia. It's up to OP to read into it and decide if it resonates or not, because doctors aren't going to.

Instead of ending up on a dusty shelf with an ME diagnosis and no further healthcare because everything else the doctors can think of has been eliminated. Like my DD did, bedbound for 5 years before she actually started to get some treatment for MCAS.

@BonnesVacances Please don't overreact; I'm not being the 'thread police' - obviously you can mention anything you want. OP has not been diagnosed with ME so ME's comorbids are not directly relevant at this point.

The politics around diagnoses are really important even though sometimes uncomfortable to think/talk about x

Thanks for your input everyone. For those suffering with M.E/CFS - were/are you able to carry out all your usual daily tasks? I CAN do this - but feel very tired throughout the day. For example, went to bed last night with my eyes burning and woke up this morning feeling the same. Although up and about and getting on with my usual jobs. So, so fed up of feeling like this though. Who are the best people to diagnose M.E? Do bloods typically show inflammation for M.E? Sorry for all the questions.

ME/CFS is a diagnosis of exclusion as the research into biomarkers is still not anywhere near to being final and definitive.

I could not complete normal tasks when I had a ME/CFS diagnosis, but as with many people who have that diagnosis, I turned out to be misdiagnosed! That's why it's so important to rule out everything else. You do not want this diagnosis if it's potentially something else causing your symptoms.

I was diagnosed with fibro/cfs about 8-9 years ago. I had very debilitating tiredness and pain, burning sensations, brain fog etc, worked part time as I just could cope with a full week. I read about the impact of gut health, e.g. this article chriskresser.com/is-fibromyalgia-caused-by-sibo-and-leaky-gut/ and I got tested at a private clinic and had SIBO. After courses of oil of oregano and continued use of probiotics I feel completely normal again. I think for anyone suffering, it’s worth looking into.

as I result of the sibo I also developed a food intolerance (gluten), but hopefully time heals my gut enough that I can enjoy proper bread again.

You're all so informative, thank you so much. I really feel for anyone who has this diagnosis but do not want to be incorrectly diagnosed because I know all further investigations will stop. I would willingly pay to see a private specialist, but not sure if I should be seeing a rheumatologist, endocrinologist or neurologist...or even a naturopath who could maybe do some tests?

I used healthpath to test my gut health, if you are going down this route a naturopath is another option, as long as they specialise in gut health.

I have the exact same symptoms as you op. I have b12, folate , ferritin deficiency. A zinc deficiency was also picked up. I’m slowly getting better and still have bad days. I was fobbed off for years. Join the pernicious anemia group on Facebook. They can help get your b12 up

Oh god, not a naturopath! Can you tell me what your GP is currently saying? Are they refusing referrals? Private may be very helpful but if you can resolve any of it via NHS it will of course save you 100s!

@Saladd0dger my aunt who was diagnosed with M.E was deficient in all those and was given liquid infusions until she was better. Can I ask how you had the test for Zinc done?

@Innocenta they are just litetally saying that my levels are well within range and sometimes we have to treat the symptoms when we can't find the cause. They haven't said M.E but I don't want to mention it either as I've been back and fore so many times, I don't want them to give up and just label me with it!

That is so annoying, I'm really sorry they're being unhelpful. If I were you I'd start by seeing a haematologist privately. They can evaluate your existing test results and then write to your GP recommending anything further (or possibly arrange for private testing if you want to go in that direction). You can have infusions done privately, it's just very expensive. Haematologists who see private patients are the exact same ones that work in the NHS, and have by far a more nuanced understanding of deficiencies than your GP.

I think the risk with seeing a rheumatologist is that you may be given a diagnosis such as fibro without fully ruling out organic causes.

If anything changes at all you should always go back to the GP because no one here can really give medical advice, and I'm very wary about the risks of potentially encouraging someone in the wrong direction. There are so many things that can cause non specific symptoms and it's easy for people to focus on the one thing they know about from experience!

(When I saw a haem privately for iron deficiency, I had a private iron infusion within a week.)

@Innocenta why not a naturopath? Gut health/bacteria is almost ignored by the nhs despite a lot of research showing it’s wide ranging impacts on health, long and short term. Bad bacteria can be a root cause of many deficiencies as they absorb nutrients we need and push out good bacteria which make certain vitamins/fatty acids we also need.