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

Who has diagnosed this? If it's your GP, it's not enough. Ask for a referral to a rheumatologist, preferably one with an interest in connective tissue diseases, they may come up.with a different diagnosis, or at least some helpful treatment. Good luck.

I’ve got multiple auto immune issues. While I’m not “fixed” I’ve found no end of improvements by improving my diet. I’ve added fermented foods like home made kefir , yogurt and sauerkraut. It all very easy when you get into the swing of things. I make sauerkraut once every 6-8 weeks and then it keeps in the fridge and I do a pint of yogurt /kefir every week. At the same time add inulin add psyllium husk to your diet as this will really help your good got fours to flourish.

I eat porridge with 5 types of mixed nuts or mixed frozen fruit for breakfast. I alternate days.

snack is yogurt with flax seed or chia seed and chopped dates.

lunch is a sliced boiled egg, mixed salad, sauerkraut and protein like ham/tuna/chicken.

snack is fruit or 70+% dark chocolate.

evening meal is whatever we are having like shepherds pie/pea and ham soup with sourdough/pasta/Scouse but I serve everything with a side or two of extra vegetables and I aim for as much diversity as possible while reducing simple carbs.

i still have treats. I make carrot cake and is packed with carrots, apple, coconut sugar and flour and chopped nuts but without the guilt. I have found that my issues are much more stable and that following a healthy diet along with a decent supplement regime it’s controllable .

My partner had some success managing gut health - kimchi, supplements - but the major help was a NeuroSym machine. Pricey but a solid long money back guarantee if it doesn’t do anything for you.

This would be my concern. Without vigorous testing fibromyalgia often means we just don't know what's wrong with you. A bit like the one size fits all gastroenteritis they were diagnosing everyone with in the 1980s even if you had cancer.

Some antidepressants can help with long term and sporadic pains.

Lymes disease is quite unusual in the UK, so GPs don't always think about it.

I remember watching a programme where someone went back to her home country in Eastern Europe and was diagnosed there bc it is much more common there.

I have fibromyalgia on top of my other life limiting illness and it can be hard, but please - if possible - don’t despair! Like another PP I have improved dramatically with the right meds for me (amiltryptiline) and pacing. I’m even about to go into an interview for a new job as I’ve been getting so much better.

It’s disorientating and gutting as a diagnosis (and im one of those ‘after rigorous testing and multiple previous diagnosis’ types) but I try to think of it as it’s a change in landscape not the end of my world. Always around for a dm if you want to talk x

I had chronic utis with tonsillitis and a permanent low grade fever in my teens and 20s for about 13 years. I fixed it by overhauling my diet (a strict exclusion diet followed by carefully reintroducing foods) , some carefully chosen supplements that were particularly aimed at healing the bladder lining and supporting my immune system, eventually getting off the antibiotic rollercoaster. I did all this at the point it was looking like I may have to give up work.
I got to the point where medical intervention was going to be more and more intrusive. I was questioning whether I would ever have children as it took up all the time I wasn't at work looking after myself. The pain was low enough that I could mostly battle through in the day but it kept me awake at night.

Ecoli bacteria which is the biggest cause of UTI can become dormant in the bladder, forming a 'sludge' to hide, then it can come out in force again once the antibiotic treatment is over, which is why constant antibiotics are recommended. This was a really new treatment when I was ill so wasn't offered it and in hindsight this was a good thing for me as I found a permanent fix.

This is probably just one piece of the puzzle but I thought my story might help.
As people have mentioned, fibromyalgia is an if nothing else fits diagnosis and yet you have a number of things that don't seem to have been followed up, including a folate deficiency. Please look at the link between folate and b12 - your b12 could be showing high without actually being utilised effectively in your body.
The UTI 's may be resolvable like mine were and may be a different part of the puzzle - as could the antibiotics which will impact on gut health.
The trouble is, we never have a practitioner that can look at us as a complete person and help us put all those pieces together.

My mum was diagnosed with Fibromyalgia, and years down the line, she has been diagnosed with other autoimmune diseases. I do believe Fibromyalgia is a symptom of other diseases, unfortunately.

You should have a referral to a rheumatologist specialist.

Hyperbaric Oxygen shows some promise as a treatment, although the studies tend to be small scale and with slightly mixed results. If there is an MS centre you can get to and you can fund the cost it it would be worth trying.

There is increasing recognition of the importance of looking after your gut for immunity. As you are on antibiotics its especially important. I favour optibac prebiotics.

You should be referred again, it's important to rule out everything before accepting a fibromyalgia diagnosis.

Could you expand on the Neurosym machine experience pls?

I found Nurosym made me worse, even on a really low setting. It also messed with my sleep.

The big improvement for him is with the crashing fatigue and brain fog. He does it twice a day and really notices when he hasn’t done it. It allows him to do other stuff that helps generally with mental state, little things like getting out with the dog. But also just helps him get on with life. There are probably other vagus nerve things you could do eg meditation, but he knew realistically he wouldn’t do them consistently. This he can do when doing other stuff, eg watching tv, reading.

I had something like that and I saw a therapist about 4 times a year for literally a whole decade and then I got better. I also got given a litre of IV saline and antifungal pills, and iv vitamins and got rid of a lot of conflict in my life, so it was hard to pin down what made the difference.

I think the nausea with me was to do with chronic dehydration. It was only after the litre of IV saline that that went away.

Good luck there. It's very hard and I really feel for you. Take care ]

Yes, I was bed bound for 18 months and recovered fully. Read ‘The Way Out’ by Alan Gordon. I know some people are vehemently opposed to the idea that this sort of thing works, but i am living proof that he is right. I spent ££££ trying every treatment under the sun and getting everything investigate whilst o was ill. This was the only thing that worked

I’ve done something similar. Paid a private OTto help me, and a hypnotist to build confidence and reduce anxiety.
I’ve gone from being in bed all day every day to going out, talking with family and friends and just doing more stuff. All in 8 weeks.

I improve every day. I do a lot of talking to my brain to tell it to stop protecting me.

Sk far the horrific parasthesia has gone ( really bad in my eyes) the eye problems that stopped me watching tv and looking at screens have gone, the weakness and breathing difficulties have gone. I still get tired and l m ow there’s a way to go h Tim I’m full recovered. But I’ve literray gone from 0-50 in 8 weeks.

Its been life changing. I also paid out a fortune for things that didn’t work. It’s all about the brain getting stuck and then trying to protect you.

Rhuematology diagnosed me with fibro this last month, however, i am probably on the milder end of it, i have friends who are floored regularly by the pain.

I'm already on gabapentin for nerve issues, and naproxen for arthritis, so maybe that is why mine is mostly mild.. think fatigue is really my main horrid symptom currently

I do get joint pain, but i'm dubious on it being Fibro and not perfectly reasonable pain like my private physio said based on my posture and antalgic gait (i have a chronic limp) and using crutches putting stress on all of them.

I told Pain Management clinic to piss off (politely) as i cope well with it imho.

I can't offer any advice but sorry you are going through this.

Take painkillers! If you are in pain it will make your life more bearable. There are no prizes for being a martyr. I hope you feel better soon - sometimes symptoms will lift suddenly for no apparent reason and you may be lucky.

Thanks for this. I think there's a lot of 'default fibro' thinking in GP land when they can't figure out what's going on. GPs should be pretty obsessive when ruling stuff out as a missed diagnosis has a huge impact on quality of life.

I think if I were your GP, I would organise:

1. 9am cortisol level
2. Referral to rheumatology again to exclude eg. Lupus (which can present with urinary symptoms weirdly).
3. A 10 minute stand test for PoTS.

I presume you've had repeated bacterial growth on your MSU urine tests from the way you're talking, but if not, PoTS and other widespread syndromes of dysautonomia can cause urinary symptoms.

1. Lyme serology if you've not had it.
2. Haemochromatosis has been ruled out by measuring ferritin, right?

Extra thoughts:

1. Presume you don't have MS symptoms. Any historic strange eye symptoms or sensory/movement loss?
2. Have you had any mris or just ultrasound?
3. Presume you don't have conjunctivitis /signs of reactive arthritis.

It sounds like you had Covid and now you have long Covid. I had a nasty Covid infection in 2020 and I’ve never been the same since. So many people are affected by it and don’t even realise that it’s Covid that’s causing it all. I really hope you find some answers. All I can say for definite is: don’t push through it - it just makes things worse. Rest as much as you can and take good care of yourself.

Thank you so much!

Hope the interview went/goes well 🙏

This is how/what I eat too!

Because my recent bloods, done during a flare, didn’t show any inflammation they won’t refer me. I’d have to pay private again and I can’t afford it alongside the urologist at the moment.

I didn’t like pacing. It reduced me to a terrified wreck too scared to move.