Long covid has stolen my life.

[Greedybilly]

It's been 2 years and I'm going round in circles. I pace, rest , take every vitamin going and still I can't get better. I feel so awful probably 5 days out of 7. I always end up trying to do something on a good day and then paying for it. Friends are busy getting on with their 'normal' lives. It's so horrible - Dr's are no help. Has anyone got anything positive to say about LC recovery please as I've completely run out of hope now.

Also weird you mention mast cells because it was post jab that I realised I have mast cells on the exterior of my body around my belly button. With the first jab I had major swelling around eyes and face, and a sudden itchy hive rash which would start with my belly area being raised red and itchy, suddenly moving all over my body. Legs, arms, and then retract just as quickly. Attacks repeated a number of times over a period and then stopped. Eventually my facial swelling went. And that was that. It went.

But I do still get an itchy raised rash on belly on occasion and when I do I know something is going on with my immune system. I might have had that before and not noticed. But I know what it is now. The jabs/ Covid definitely interacted with mast cells.

I had Covid 5 times each bout progressively worse than the previous. Ended up in hospital with sky high blood pressure. Now on meds but have chronic fatigue, lungs that spend the morning coughing up crap and can’t cope with windy weather as it takes the breath out of me

I echo the recommendations for Suzy Bolt's online programme - both for the actual content and the community. And to ask your GP for a referral to a Long COVID clinic if your area has one - although I hear they vary greatly, you might be lucky with some helpful support (I have been, including a referral on to the ENO Breathe programme). Other things I think have helped me are antihistamines, electrolytes and a good quality probiotic (I take YourGutPlus). I'm often found with an ice pack on me as it helps the nervous system symptoms, and my temperature regulation is also pretty broken!

I was diagnosed the end of last year and am gradually improving, but still struggling to know how much I can do and how much I need to rest.

You've already received some good advice here, OP. One thing to definitely make sure is that there isn't a deficiency going on that's gone unaddressed, I found out I was anaemic through other tests and whilst I wouldn't say that taking iron has transformed everything, it is a lot better- there's good advice online about taking it every other day, with Vit C, also check B vits and D level in case anything obvious is missing. Otherwise, I'd be thinking about the probiotic recommended on here, and that setting the nervous system again is a way forward but only in a very gradual way, I found light, smell and motion all too much at the worst phase, and over time that, and the fainting feeling on standing did all resolve but it took years and not months. I still need to take supplements, do relaxation and meditation and not do too much, even now.

The first thing I got was sat in a cafe in Berlin waiting for my husband who was in a shop next door - suddenly got a buzzing sensation round my mouth and felt feint - luckily I had a mirror above me-so I checked and my mouth hadn’t dropped and could raise my arms ok - went off- next day, buzzing in lower legs in shopping centre and felt feint, then it just built up and up over a few weeks - like you say my legs didn’t feel right at all. I had all my previous jabs in Copenhagen and was fine, the 4th I had in the UK and then immediately got Covid and this all started literally straight after showing negative - totally horrible experience - clearly though a virus that killed so many ( and not all old or unfit) had the potential to make many many others very unwell

Honestly the breathing exercises really did help me but took consistency over a long period of time - I think they helped me most , along with stretching around head and neck areas- the fact I get the horrendous back of head pain makes me think that my nervous issues had particularly affected that area, too if spine into brain etc . I actually started improving instantly with beta blockers too, made me feel sluggish but I do feel somehow calmed my system down - very old school these days I know .

Can I just add too ladies you are not imagining it- I hadn’t seen a doctor apart from smear test in 23 years!! I saw 4 plus 3 blood tests, 2A&E sessions , an ultrasound, a chest x ray, plus a neurologist in 5 weeks