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

@Buttercup72 I am in treatment for SIBO with the NHS, actually!

I'm glad that natural medicine has helped you as an individual, but for anyone with non specific symptoms it's better to use conventional medicine to explore what might be going on first. OP is not even close to exhausting those options and going sideways into natural medicine carries many risks.

The same symptoms. Unfortunately caused by the Astrazeneca vaccines. I now have a diagnosis of ME/CFS.

Please don't spread antivaxxer views when we are all just trying to help and support OP.

Hi :)

I have ME/CFS- it does sound like it could be what you have, but it’s hard to be definitive as ME/CFS is a diagnosis of exclusion once everything has been ruled out. I know when I was first diagnosed I was FRANTIC to have it be anything else but ME, because other things are usually treatable and ME isn’t really.

Anyway, I just wanted to let you know that I know how hard it is, but if it does turn out to be ME it doesn’t mean things won’t ever get better. Lots of people never recover fully but they do improve a lot from where they’ve started. I was housebound to begin with an couldn’t manage many basic activities.
Now I still have to be very mindful of my pacing but I can work part time, I can do trips out with my daughter, I can wash my own hair, etc. Which I couldn’t before.

The most important thing though is to rest as much as possible. It’s so tempting to try and push through but it really does make you worse in the long run.

@riotlady totally agree with everything you said and I'm so glad things have improved for you

@Innocenta glad you are getting treatment on nhs, but NICE guideline mean you only get antibiotics if you have fat malabsorption. I managed to get antibiotics only after I got my test results privately- gastro diagnosed me initially with IBS. There’s lots of research on antibiotic vs oil of oregano and they are both highly effective (oil of oregano being a longer gentler course).

hope you notice a difference after your treatment. I felt worse before I got better, as the bacteria dying off cause symptoms, but it’s been lifechanging for me. I occasionally get a bit lax with the probiotics and feel symptoms creeping back, but I feel much better after a few days back on the probiotics or kefir.

Innocenta that is very offensive. I posted in support of the OP. I am clearly not an anti-vaxxer as had two (plus all my other vaccines). I have a vaccine injury as documented by my neurologist, GP, the ME/CFS service where I live and countless other healthcare professionals who I have sadly had to be investigated by in the last year.

Those of us who have had this terrible experience are acutely aware of the difficulties of talking about our health issues post-vaccine. It is very isolating on top of suffering from serious illness and comments like yours are hugely unhelpful and upsetting.

@maskersanonymous You are derailing from the thread.

@Buttercup72 The NHS actually offers really good treatment for SIBO. I'm sorry you haven't had a good experience - I think all diagnoses sadly can receive poor treatment. I was misdiagnosed and received very very poor treatment for years so I'm familiar with that! But it's important not to make people think 'natural' medicine is the only option.

Have you been tested for coeliacs?

I’m not saying it’s the only option - you seeming to be saying only the things you personally agree with are valid.

for the more open minded there is lots of really good research available online around SIBO being the root cause of fibro/me/cfs, and the effectiveness of specific natural remedies (which are on a par with antibiotics). For those, like me, who do not get this option on the nhs, private testing/treatment for sibo is ANOTHER option to try. Unfortunately, despite the extreme tiredness you need to put real effort into getting any sort of treatment once they cast you in the me/fibro bin.

@Buttercup72 No, I'm not saying that at all. This is medicine - it's not a matter of my personal opinion or yours. I don't think I know what is going on with OP. I don't think open mindedness is relevant either. What matters is safety.

A dietitian ordered it along with some others

@riotlady that is literally how I feel. I REALLY dont want this diagnosis but my symptoms fit with this more than anything else. Did you find the cause and how long did it take to get better? I cannot pace/rest when I want. I'm a teacher and when not in work have a 2 and a 5 year old.

Mine was triggered by a viral infection, which is quite common. It’s been 2 years now since I first got ill, I’d say the first 8 months or so I was pretty static and then after that I started improving very slowly.

It’s really hard to manage the resting but at a certain point if you don’t do it, your body sort of shuts down and forces you to. I was training for a NHS career and although I managed to complete my degree, I had to make the decision that going into that role and being on my feet all day wasn’t going to work for me and would make me ill at the expense of spending time with my daughter. I cried about it a lot at the time as I’d worked so hard and I really loved what I trained in, but it was for the best and now I have a desk based job that I enjoy and is much more manageable for me. There was definitely a point where I had to switch my mindset from coping with the here and now to looking to the longer term and arranging my life to fit the fact that I’m chronically ill.

I think developing a chronic illness has a lot in common with grieving in a way- you’re saying goodbye to what you thought life would look like and it’s normal to feel angry and panicked and depressed. It’s a massive adjustment but just because life ends up looking different to what you thought, that doesn’t mean it’s bad. I know that’s what I needed to hear when I was getting diagnosed- that you can have ME and life can still be good!

@riotlady can I ask who diagnosed you? And did you have any symptoms of POTs? These were the symptoms that developed for me first. Is this a relapsing/remitting condition?

Sorry, I don’t have POTs so I don’t know much about it I’m afraid! I know lots of people do have both though

Diagnosis of ME- had to go to my GP first who did exclusionary tests (vitamin deficiencies etc), then I had to see gastro fir a bit and get an endoscopy as I get lots of stomach problems with mine, then when they were pretty sure it was ME I got sent to a consultant at the hospital to confirm (weirdly it was the department for tropical medicine and infectious disease? I don’t know if that’s typical!)

@riotlady The doctors who look after ME patients are spread across a whole variety of specialties! It just depends who develops an interest, really.

I had many of the same symptoms before a diagnosis of MS. Also had a previous clear MRI so was only diagnosed following a lumber puncture and follow up MRI of both brain and spinal cord. Now I'm on medication I rarely have any issues from it at all.

@riotlady what vitamin tests did they do? I had to ask to have my Vit D and B12 tested myself. Do you ever have symptom free days and did they say if this would go away? I just want to get on with life!

@kagerou sorry to hear that, especially as you had a clear MRI first - that must have been such a shock..

Could it be your parathyroid? Low vitamin d can cause issues with your parathyroid which, in turn, can cause issues with the calcium levels in your body. A lot of your symptoms fit - hyperparathyroidism is one of those things that Dr's rarely rule out before diagnosing M.E/CFS and the symptoms overlap.

You would need to get your PTH, calcium and vit d tested from the same blood draw to rule this out.

I think they did nearly all of them except vitamin D! I did a test privately and my levels were actually really low, I got them back up and it helped with some aches and pains but didn’t cure any of my other symptoms sadly.

Symptom-free days- yes and no. I don’t ever have days where I’m back to my old energy levels and I can go for a run and clean my house and meet my friends for dinner all in a day. That’s just not possible anymore. I do have plenty of days where I feel relatively ok and I don’t get any brain fog or pains or nausea, but I still don’t have the energy capacity that I used to. That’s where the pacing comes in, I think- if I pace myself properly I don’t crash and get all my worst symptoms. It’s about avoiding the boom and bust cycle of I feel ok! > I do loads of things > I crash and hibernate > I finally feel ok again > so I push too hard and do loads of things

My doctor told me basically not to expect to get better in the short term and didn’t make any further commentary than that. I do anecdotally know people in ME groups and things who have fully recovered (or are in remission, depending on how you look at it) but they seem to be quite a small proportion. A bigger chunk are people like me who aren’t fully recovered, but have improved a lot from where they were.

@NumberCurtains my GP has never even suggested this - or given a reason for any of my symptoms actually. Would these symptoms come and go? This week my only symptom has been the fatigue and faster heart rate today outside in the hot weather.

@riotlady thank you. I didn't know that GP's could test for Zinc etc.

Totally agree with @riotlady OP. Have they done a stool sample for you as well? My neurologist was flabbergasted that they hadn’t bothered even doing that as it’s standard before an M.E diagnosis. It could be that you have deficiencies, or something causing deficiencies. It could just as easily be the beginnings of MS or migraines or any number of other illnesses. Perhaps the best plan of action for you is to look at your bloods and analyse them with a private specialist( not sure what they would be called though) then if nothing comes from that a neurologist? Just keep chipping away until you’re certain nothing is coming up.

Other than that rest as much as you can. If you’re not shopping online so that already. Go to bed earlier if you can and get as much help
as you can around you. Can you afford a cleaner too? Healthier ready meals that you can just shove in to give yourself breathing room to rest in the evenings.

Woken up this morning with a painful lymph node behibd my neck. It's M.E isn't it? 😭