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

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?

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?

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.🌹

No real help but to say my husband was diagnosed with this too, referral to CFS/ME clinic and they discharged him without treatment citing he didn't have it. The label has never been taken off his record and not been explained. Symptoms lasted about 6 months and resolved. 3 years later he is having another episode of whatever it is but not as severe. Pushing for more testing!
You should get FBC, ferritin, iron, b12 and folate, vitamin d, thyroid, electrolytes, liver function, urea, CRP, ESR, ANA, RF, Anti CCP, creatinine kinase, cortisol, estrogen, progesterone, prolactin all tested. And a viral screen for EBV and CMV and Lyme disease (if risk of ticks is relevant)
Coeliac disease also causes a lot of overlapping symptoms

Good luck to you. Don't give up hope :)

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 got a daith piercing focusing on my vagus nerve from a migraine clinic for fibromyalgia and as much as people will say its incurable, it literally cured me and a plethora of other issues including chronic migraines, issues with my menstrual cycle etc. Really really really reccomend, the vagus nerve being out of whack causes so much dysfunction in our bodies.

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%.

Fibro shouldn’t be diagnosed until everything else is tested for.

my DD was diagnosed with it and then it was discovered she had hashimotos thyroiditis.

yours sounds more like post viral.

Have you been tested for Lyme's disease?

I’m so sorry, OP. There’s a big overlap of symptoms between fibromyalgia and Long Covid. It might be worth you looking into LC. As @Blev2022 says, definitely push for EBV and Lyme screening. Both were reactivated for me and I had no idea I’d ever been exposed. Some cases of LC respond well to the fibrinolytics nattokinase, lumbrokinase and serrapeptase. Persistent bladder symptoms can result from MCAS, which is also common after Covid. I hope you can find help xx

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

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.

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.

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

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

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

Sounds Legit

Also reported. Absolute bs.

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

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.

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.

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.

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.

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.

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

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.

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.