Sorry AIBU. Long time lurker (I was active on the conception boards when trying - my kids are now 11 and 8) posting in desperation for traffic.
I’m hoping a kindly medic might magically read this and feel able to give me a few pointers. I feel increasingly demoralised with poor health and it is so hard to engage with our GP now I just don’t have the resilience for it.
My partner has family BUPA through his work and we are lucky enough to be able to pay privately if I knew where to go to get help (I do recognise this is a privilege not open to many) but I feel like I’m flailing around and increasingly vulnerable to snake oil salesmen.
Main Symptoms
All aggravated after Covid in 2022 but getting worse rather than better despite an ok lifestyle (details below fwiw) and increasingly desperate supplements/interventions.
Fatigue
Brain fog - feels like a physical band squeezing my head, like I’m wearing a hat with a too tight headband. (It often feels bizarrely like there’s an imaginary pencil behind my right ear!)
Acute & often painful feeling of cold, even if it’s mild out
Circulation v sluggish - my limbs are always cold and my hands are usually blotchy. The soles of my feet are usually white and waxy even when I am wearing thermal socks x 3. The skin on my hands looks like that of an 80 year olds. SO tired and dry.
Tingling in feet almost permanently - I’m worried there’s permanent nerve damage from the amount of time the soles are without enough blood
Dizziness on standing & odd sense of being off balance when walking sometimes
Chest tight
Incredibly dry eyes (though this got marginally better with starting HRT to be fair)
Have long (10+ years?) had a problem with my right arm feeling painful, cold and slow. No joy with NHS physio. Saw a chiro who thought Thorassic Outlet Syndrome but no proper diagnosis. TOS sounds likely to from me perhaps linked to RSI. I use laptop and smartphone too much and that definitely doesn’t help whatever it is. But I don’t think circulation issue can be only TOS because my left arm is affected too (albeit not as badly) as are my feet. When I used to run I’d get back from a long run unable to use my right arm to (eg) put a key in a lock.
Have had Raynauds since teens - never used to bother me too much but it has got so much worse the last few years. It is much more debilitating and presents differently. I can now have stiff cold white hands whilst only my fingertips stay pink now, for example.
And now on top of all the other shit these last 1-2 weeks my face has felt tingly and numb and a bit slow and weird too. Like I’ve permanently just come in from the cold. It’s freaking me out a bit.
I try really hard to take care of myself and to live a lifestyle that prioritises but isn’t dominated/overly obsessed by health considerations.
I gave up a stressful job at the end of 2022 to take time to recover from what I still believed was Long Covid (hasn’t worked!) so though I have usual set of midlife/family hassles I’ve probably less stress & anxiety in my life than many. Sleep ok.
Not much UPF. Most meals home cooked. Plenty of nuts and veg. Soft spot for cakes and sugary crap. Eat meat but try to limit to high welfare/organic a few x week.
Moderate alcohol consumption with 3-4 AF days at minimum every week & plenty of longer breaks.
I have done Zoe and my blood sugar, blood fat responses and gut health all came back “excellent”. My diet was graded good (presume not excellent because of the sweet tooth/alcohol!).
Walk 10-15k steps a day on average even now despite fatigue. Try and run periodically still though I find it so hard now. (Used to be able to run regular 20-30k trails, pre Covid). Yoga couple of times a week.
Recent Medichecks thyroid profile said all fine save low Active B12. (I thought thyroid might explain the feeling so cold).
I had a few B12 jabs last year (as per the desperation!) and have been supplementing with Athletic Greens (ditto!) which includes a Bcomplex so am surprised it’s still as low as it is. Though higher than when I last tested it is still coming back flagged as low.
I’ve just gullibly taken their advice to order their (expensive!) further test for pernicious anemia but presume that would have come up on my own GPs bloods if that was likely to be it so not really hopeful.
My GP did a blood test c18 months ago inc for autoimmune markers and said all was clear. They’ve refused to do anything since.
Towards end 2023 I had a GP call through the long covid service (that I got by crying on their breathing physio about how hard it is to see GP) and after crying on him he made a (grudging!) referral to rheumatology. They promptly refused it saying there’s no clinical reason not to continue to treat as primary reynauds.
But why is it getting worse? Surely I shouldn’t have to feel this tired and pained and stiff and cold and just WEIRD for the rest of my life?
I know I should take this latest (weird) face symptom to my doctors but I just cannot bear being on hold on for 30 minutes to battle a receptionist to be allowed to battle a GP who has already decided I’m the worried well and/or that Long Covid is the catch all explanation for everything I ever say.
I know they are overworked and underfunded and I wish they had it easier but I also wish they’d care that I feel unheard and written off. I am only 46! I want to function sufficiently to be able to hold down a high-powered job again, to run trails again, to think clearly enough to write.
I will be so grateful for any informed pointers as to where to go and where not to, even if you too think I’m the worried well (just be gentle if you do!)