To feel devastated by this news?

[Whentherainwashesyouclean]

Long story short I became ill with an unknown virus last summer. I’ve never felt like myself or truly well since. I’ve since developed a chronic UTI that I’m on long term antibiotics for.

I’ve been back and forwards to the doctors with crippling fatigue and joint pain along with nausea, headaches and generally feeling poorly. I can have a few good weeks and then boom, it comes back.

Ive now been diagnosed with fibromyalgia. From the research I’ve done it isn’t curable and I feel absolutely devastated that this will be my new normal now.

Im even more frustrated as I don’t drink alcohol, smoke, take drugs or eat ultra processed foods or anything unhealthy. I’ve exercised my whole life. Unfortunately I can only manage walking and Pilates now and that’s becoming too painful.

I work full time and am a single parent to a preteen. I’m terrified of what could happen if I can’t work. I have a mortgage. I’m already struggling so much to get through the days.

Has anyone got any stories of reversing this? I need some hope right now.

Thanks if you made it to the end! X

Im not sure I could working full time and being a single parent. How do people manage it?

Go back and see your GP and tell him (not sure if you've said but it's always a man) that many autoimmune diseases don't show on bloods / are seronegative and demand a referral. Bring evidence/referral criteria from NHS/NICE guidelines with you. I'm sorry you're so unwell but this thread is enraging me, a GP is totally unqualified to diagnose this.

I can't add anything useful but solidarity as I had a chronic uti which I got treated with long term antibiotics and hiprex privately. Unfortunately I developed vulvodynia which I believe was directly from the embedded uti and treatment. I am still living with this condition and it makes me so angry as if my uti had been treated probably in the first place I don't believe I would have these issues....I would certainly be richer based on all the money spent. I have also lost all faith in our health care service after what I have been through. The only improvements I had had in my conditions I have had to research, push for treatment and pay for privately.

I’ve ordered a Lyme blood test from Medichecks to rule out Lyme.

My ferritin levels were normal on my last blood test.

I paid privately for an MRI, I’ll attach the findings.

I’m so sorry you also had to go through this. It’s a truly dreadful illness. Can I ask how long you were on treatment?

Can I ask if it was an one-off IV or a course of them?

Hi Op, I’m sorry that you’re going through this. I was diagnosed with B12 deficiency via an active b12 test rather than the normal NHS test. It shows the B12 that your body is using rather than the B12 than is floating around, not necessarily being utilised.
I hope you find an answer - the stress of banging your head up against the wall with GPs is an added trauma to your illness.

my bloods have NEVER shown any inflammation spikes when i've been in a lot of pain, so we proved via painrelief testing that something is suffering an inflammatory response.

That being: On naproxen (nsaid) i can function, Off naproxed - i hurt, my joints are stiff/painful in the mornings and after exercise.

I also took myself to a private physio, a rehab specialist who did a thorough whole body check and found issues with my musculoskeletal system that the NHS has pointedly missed!

the physios letter is what got me referred to Rheumatology.

That is interesting. I’ve been to physio for my shoulder. It’s painful all of the time. The rest of the time it’s my joints. Ankles, knees and wrists being the worst.

Thank you.
Normal ferritin rules out haemochromatosis, normal MRI makes MS less likely (although it didn't sound like this anyway).

Presume you've had bone profile /calcium/folate in light of the paraesthesia mentioned in the indications part of your scan? I can see you've already had B12 measured

I really think you need an early morning cortisol/PoTS screen. Either of those conditions could fit your symptoms.

Addison's:
https://www.nhs.uk/conditions/addisons-disease/
Can cause paraesthesia/increased thirst and urination.

PoTS:
Website written by just about the best doctor I've ever met on the subject.
syncope.co.uk/syncope-fainting-blacking-out-passing-out/causes/

My folate was low.

I'm so sorry that sounds awful. Your symptoms sound similar to a family member of mine who has long covid, which obviously is triggered by the coronavirus. Could that be worth looking into? She found this helpful https://www.longcovidsos.org/ Hope things start to get better for you 💐

I was on antibiotics for just over. Year and hiprex for another year months.