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AIBU?

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Original poster

To feel devastated by this news?

138 replies

Whentherainwashesyouclean · 21/09/2025 20:02

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

OP posts:
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Original poster
Whentherainwashesyouclean · 21/09/2025 22:24

LovingLimePeer · 21/09/2025 21:50

Have you been screened for ovarian cancer?
I.e. had CEA blood test plus ultrasound due to the urinary synptoms/nausea/fatigue.
Do you have persistent blood on your urine test?
Have they excluded bladder cancer/renal cancer.

If these have been excluded, have you been screened for Addison's?
I.e. 9am serum cortisol test
It can cause urinary sx/nausea/fatigue/muscle aches/headaches.

I'm sure they've excluded diabetes so I won't mention that.

Other than that, PoTS is the only other thing which springs to mind.
Or MCAS possibly.

Any other details such as rashes/other symptoms would be helpful.

I’ve had a plethora of bloods done. Rheumatoid factor and ANA were normal.

Bladder and kidney scans along with a cystoscopy which was normal.

The year before I had an ultrasound for abnormal bleeding but nothing came of it. I’m also on HRT for peri symptoms.

It’s the joint pain and crippling fatigue that are the worst symptoms for me.

OP posts:
Dmsandfloatydress · 21/09/2025 22:22

I had a long term bladder pain problem. I later discovered the whole problem was caused by the Depo injection which I received the same time as catching a UTI. Bladder needs Estrogen to function optimally. As you're in your late 30s you may be perimenopausal do have low Estrogen. See if you can get some Estrogen pessaries or patches and check if they help your recovery? Also long tern antibiotics will play havoc with your general health although you will need them for an I bedded infection. Make sure you are drinking lots of kefir to support your gut throughout the process as thrush will make your bladder worse

Toesy · 21/09/2025 22:22

Just two things.
B vitamins are best not taken at night.
I have an autoimmune disease and several friends with fibromyalgia.
You are in shock now but give yourself time.
My friends all work, run businesses, look fab despite having this 20+ years and are now in their 50's.
Mind your gut.
Eat foods like live yoghurt,keffir, kimchi, blueberries, walnuts and dates that help your gut.
Everyone mentions going gluten free.
Its hard, I love bread, but gluten really flares them and me up.
Add good olive oil to your diet, stir into yoghurt, even spoonfuls if you can. Its really good for us.

Several are vegan, all stay away from red meat and pork completely.
Stress is a killer, so try and mind yourself and rest as much as you can.
Join groups on FB. They are full of wisdom.
Chin up, you will be ok.

GreenGreenGreenRed · 21/09/2025 22:21

Definitely push for a rheumatology referral. GPs shouldn't be diagnosing this (but they do).

butterfly0404 · 21/09/2025 22:21

Whentherainwashesyouclean · 21/09/2025 22:12

Yes it’s been a process of elimination. I’ve had an MRI. Bloods showed low wbc and folate and high b12.

Show quote history

B12 can show as high if you have supplemented or eaten foods fortified with b12. B12 may not be being absorbed through your stomache forvuptake ny your cells. B12 testing should only be done after 4months free of any b12 supplement or food high in b12.
Folate and b12 work hand in hand, how low was your folate ?

Aluna · 21/09/2025 22:19

Whentherainwashesyouclean · 21/09/2025 22:14

Yes it was a GP.

Show quote history

Don’t ever get a serious health diagnosis from a GP, you need to be referred to a specialist.

Ask for a referral to your local CFS Clinic or a consultant rheumatologist.

Original poster
Whentherainwashesyouclean · 21/09/2025 22:19

BrownFlower2 · 21/09/2025 21:21

It's hard to come to terms with OP. Like you, I have a chronic uti and Fibromyalgia (diagnosed by Rheumatology; they will diagnose it pretty quickly after a bit of poking and prodding around in your joints, which isn't nice!)

It can be managed, but not cured. The fact that you dont eat too much sugar/unhealthy foods is a bonus. I've had food intolerance tests done; I was intolerant to all dairy and eggs. Once I cut that out, the pain improved dramatically. Are you taking any medication? Pregablin was a game changer for me. It's doesnt get rid of the pain but it makes it more bearable. As another poster has said, Duloxetine can be prescribed and OTC meds help too. The fact you are doing pilates is great as exercise has shown by studies to be beneficial (although some find it worsens symptoms). I do light stretching which help so much as does pacing your activities as much as possible. Everyone's symptoms and their variability is different with Fibro, no one approach for right for everyone, as another poster have said what a GP thinks is Fibro can be something else entirely. There's a great book called The Fibro Manuel by Ginerva Liptan which has a lot of good advice in.
With the Chronic UTI, are you under a specialist or urology on the NHS? There are some specialists that offer broth cultures which are, l believe, more comprehensive than current NHS testing.

I still manage to work part time, but I won't lie, i do find it difficult.
I hope this helps, it's a horrible illness to navigate.

Thank you.

Im under a private team for the embedded UTI. It’s been horrendous having that alone. I do wonder if my fibro symptoms will go if I can eradicate the bladder infection. I’ve dealt with that for nearly a year too but only been on a consistent treatment plan since July.

I don’t take any painkillers yet. Trying to hold off.

OP posts:
justasking111 · 21/09/2025 22:17

One friends partner finds marijuana helps
Another friend has managed to play golf on good days and says it helps.

butterfly0404 · 21/09/2025 22:15

I was diagnosed with Fibro, wrongly...it was severe b12 deficiency, low folate and Vit D. I now have b12 Injections twice weekly for life. If you haven't had these tested, along with full iron panel, I urge you to do so.

GP's will say bloods are normal when they are not optimal, testing ranges are set low and many people suffer when they could be receiving treatment.

Original poster
Whentherainwashesyouclean · 21/09/2025 22:15

MustTryHarderAndHarder · 21/09/2025 21:00

Have you been tested for Lyme's disease?

No but I have ordered a kit from medichecks to look into this.

OP posts:
Original poster
Whentherainwashesyouclean · 21/09/2025 22:14

Lollytea655 · 21/09/2025 20:48

Who diagnosed you with fibromyalgia OP?

Mainly asking because it is sort of “if nothing else is found” diagnosis, there is no test for it, it is essentially if they’ve checked everything else and can’t find anything then they say it is fibromyalgia. That’s okay- IF they actually have checked everything else. If it is a GP that has given you this diagnosis I’d be very wary of just accepting it, misdiagnosis rates of fibromyalgia are very high from primary care (so GP’s), around 20-38%.

Yes it was a GP.

OP posts:
Original poster
Whentherainwashesyouclean · 21/09/2025 22:12

jettisoned · 21/09/2025 20:12

Did a rheumatologist diagnose you? Have you had full autoimmune blood panel done? Other bloods - full thyroid panel, vit d, b, folate, ferritin etc. you need to be aware that what your GP will mark as ok isnt necessarily optimal. E.g. Ferritin needs to be at least 70 but will be marked ok at 20.

Fibromyalgia should only be diagnosed if other possibilities have been ruled out eg. Pots, mcas, vasculitis, h.pylori, sjogrens ra, pa etc. have you had scans?

Yes it’s been a process of elimination. I’ve had an MRI. Bloods showed low wbc and folate and high b12.

OP posts:
Original poster
Whentherainwashesyouclean · 21/09/2025 22:11

ItsFridayIminLoveJS · 21/09/2025 20:15

Had it scince l was 28 ( I'm now 66) .. brought on by trauma ( horrific drug gang rape)... no cure..but so many support groups on line and meet ups.
Unfortunately Fibromyalgia has over 200 symtoms.. some people have a few some have loads.
Duloxetine is the medication of choice by most GPs and experts.
The most important thing is to " pace" yourself.
Some days will be better than others.. you might go for weeks/ months without a major flare up.
https://fibro.org.uk/

www.fmauk.org/contactsmenu/supportgroups
Sending soft hugs.🌹

I am so sorry that happened to you.

OP posts:
Original poster
Whentherainwashesyouclean · 21/09/2025 22:10

autienotnaughty · 21/09/2025 20:12

How old are you? When you say long term anti biotics are you on a low dose? What have they ruled out? Any possibility of tick bites?
You could apply for pip? And save the money incase you get worse and can’t work or
over pay your mortgage?

Edited

I’m late thirties.

I am on high dose, long term antibiotics and I’ve been on them since July.

No tick bites as far as I know.

OP posts:
Thefsm · 21/09/2025 22:06

I know how you feel - I had a virus at 21 that gave me RA and at first it was so bad I needed help bathing and dressing. Now I’m 44 and not on any special meds and rarely flare up badly. It’s a little rough in winter and cold weather or storms, but generally as long as I steer clear of citrus and soaps I am ok. Hopefully your auto immune issues will settle down after this initial flare.

BrownFlower2 · 21/09/2025 21:51

PrizedPickledPopcorn · 21/09/2025 21:28

I’m massively improved from when I was diagnosed. I’ve built up to a 26 hour working week. I’m reasonably normal- no one would know I was not just a somewhat unfit middle aged woman.

I have learned how to manage it.

I was literally sofa bound and struggling to manage the stairs at bedtime. So much pain.

Treatment improved my sleep and pain- which has an amazing impact on pain!

Pacing is stopping before you get tired. Doing less than you think you can manage. You gradually increase your capacity if you can avoid hitting the wall. Don’t do boom and bust.

Don't despair! Do adopt all the healthy living stuff and make sure everything else has been properly ruled out.

All of this. Great to hear you've improved @PrizedPickledPopcorn . I find pacing helped so much too.

LovingLimePeer · 21/09/2025 21:50

Have you been screened for ovarian cancer?
I.e. had CEA blood test plus ultrasound due to the urinary synptoms/nausea/fatigue.
Do you have persistent blood on your urine test?
Have they excluded bladder cancer/renal cancer.

If these have been excluded, have you been screened for Addison's?
I.e. 9am serum cortisol test
It can cause urinary sx/nausea/fatigue/muscle aches/headaches.

I'm sure they've excluded diabetes so I won't mention that.

Other than that, PoTS is the only other thing which springs to mind.
Or MCAS possibly.

Any other details such as rashes/other symptoms would be helpful.

Aluna · 21/09/2025 21:48

Fibromyalgia is not the obvious diagnosis after a virus - that would be CFS.

Ask to be referred to a CFS Clinic for a second opinion. Some people have CFS and Fibromyalgia but you need to get the diagnosis right.

Sixtimesnow · 21/09/2025 21:48

There is some work with Liverpool University with trying to cure. They're not there yet though. I've had it for ten years now and work FT. You're unlikely to get PiP imv.

You have to put all your efforts into staying well. Exercise gently every day. Keep your muscles strong. I swim and row in 15 minute bursts. If you can't sleep get medication to help. Do something to calm yourself eg meditation, breath work. I like Michael Mosley's Deep Calm series on BBC Sounds. Eat as clean as possible.

Pacing is key. You can't shop all day, walk 20k, fly long haul easily. You have to be able to rest. Sadly this can mean you don't socialise much with a FT job. Avoid stress.

I buy food that doesn't require much prep because I'm dog tired after work.

It takes some adjusting to and accepting. I'm sorry you have it. I can just about manage to work FT as long as I do nothing else. Spare time is for resting.

bigwhitedog · 21/09/2025 21:46

Another one echoing the questions on how this was diagnosed? My husband was diagnosed with fibromyalgia by a disinterested GP, it was actually psoriatic arthritis. Friend diagnosed with it and it was actually lupus. Both of which have various treatments if not cures.

FlyingUnicornWings · 21/09/2025 21:43

ShootingCoyotesOutTheWindow · 21/09/2025 20:38

Try the Optimum Health Clinic (I don’t know yet if they’re any good). They offer a free discovery call, as well as free info packs and YouTube videos.

www.theoptimumhealthclinic.com/free-report?utm_source=google&utm_medium=ppc&utm_campaign=21025945127&utm_term=optimum%20health%20clinic&gad_source=1&gad_campaignid=21025945127&gbraid=0AAAAAD7oGLMiBgsfmpvu6tq6Y1gtWrJ7r&gclid=EAIaIQobChMIyoG5o83qjwMVZ5RQBh3_KA3rEAAYASAAEgLA1vD_BwE

I came out of the “course” with them feeling gaslit. If I didn’t follow everything they recommended, then it was my fault I was ill. EFT tapping, the STOP process, unachievable nutrition advice; the facilitator was even talking about how we should be making our own yoghurt!! Former patients become facilitators to prove that if you follow their formula you will be cured, hooray!

Walk away from anything that says it’s curable. It’s not. Managed, yes. Cured, no.

Echoing other posters who say everything else needs to be ruled out before fibromyalgia can be diagnosed.

LakieLady · 21/09/2025 21:39

I know 2 people with FM diagnoses who have found acupuncture reduced their symptoms significantly.

jettisoned · 21/09/2025 21:37

chasingpavementsnotpayments · 21/09/2025 21:30

https://www.thechrysaliseffect.co.uk/

I've heard a lot of positive outcomes from this approach

Also reported. Absolute bs.

jettisoned · 21/09/2025 21:34

DiscouragingDiagnosis · 21/09/2025 21:19

Please don't despair. Have a look at https://www.recoverynorway.org/

https://en.m.wikipedia.org/wiki/TheLightningg_Process

Sounds Legit Hmm