To feel devastated by this news?

OP I had similar symptoms and got very discouraged until I had to start a lactose and gluten free diet for unrelated health reasons. The pain cleared up in less than a month.
I think that often people are diagnosed with fibro when infant their symptoms have a cause, just not one the doctors have yet been able to identify.

It is devastating & while there are lots of people who have “recovered” the danger is you throw yourself into recovering - which can be counterproductive. Aim to manage not cure. It’s really hard to accept OP & you’ve every right to feel how you feel. Just beware of nutritional therapy & functional practitioners. Pple with Fibromyalgia & ME/CFS & other conditions end up wasting £1000’s in the quest to help, manage & cure. It’s only natural to want to try & obviously lots of holistic therapies & good nutrition are beneficial. I wasted time & money & hope on functional medical practitioners who claim diet & food is medicine & can heal virtually autoimmune issues. Food certainly can be & thats widely proven empirically with reversing diabetes & managing allergies plus so many more etc. Like a PP mentioned, the really restrictive, expensive programs that require you to ingest excessive amounts of vitamins & minerals & follow extreme diets & practises are to be warned against. Good luck.

I have this and not gonna lie it’s shit
im also full of arthritis and have eheds
im meno and exhausted all of the time i have an under active thyroid and feel asleep all day

i had a virus as 22 that triggered my genetic ehlers danlos syndrome, POTS and gastroparesis. I had episodes over the years but almost 20 years later I barely get it or I at least recognise what to do.

many things helped but in general among them duloxetine (a SNRI which is also used to treat symptoms fibromyalgia) was very good

Please claim for PIP. Do this now! Ask a health care professional to help you fill in the forms. This is not counted as income BTW and is not means tested
I had something similar about 15 years ago,no nausea or headaches though, just awful joint pain;,reynaulds, exhaustion and muscle spasms. Asked GP countless times to get it investigated and after a few years what ever it was had burned itself out

Bless you OP.

I’m in my 60s and have had it for more than a decade. Triggered by horrible life events and shingles possibly.

What helps me is trying to stay positive, so I tell myself that I have Fibromyalgia, it doesn’t have me. It doesn’t define me.

Best advice I got was to never push myself to exhaustion. Never go more than 80%. So, say I’m gardening, and getting a bit tired, but think, oh, I can do another 20 minutes, I don’t push myself, I stop. Pacing yourself is key.

I used to run and play squash, now I swim and do yoga.

CBD cream on aching legs and lower back helps. Better than Volterol imo. Wheat bags also. I have a weighted blanket which helps too. Sometimes I go to bed at 8pm. If I know I’m going to be busy for a couple of days, I schedule in rest times and early nights. I eat healthily. I’m a dog walker, and busy with that, but again, I factor in my condition. So small dogs only, no more jogging with border collies! Now it’s pugs and Westies, smaller dogs, shorter walks at a slower pace.

I think my attitude helps, I’ve accepted it, adapted, but still live an active life, slow and steady is best for me. Good luck OP.

Multiple courses of antibiotics triggered mine. I used acupuncture, health kinesiology and I got my teeth deep cleaned below the gum level with a gum dentist which helped the inflammation in my body.
I think not going to a deep sleep contributes

Go back to rheumatology you could have sero negative RA and you definitely should apply to pip

Hi OP, I'm really sorry about this news. It can be really hard to accept it especially if you go from being really fit and active and then suddenly you are tired and in pain all the time. What seems to help me is taking hot baths with magnesium salt twice a week. Stress is a trigger and getting proper sleep is really important. Gluten flares me up a lot. I found physio and acupuncture to be really helpful. I am still trying to come in to terms of accepting that I cannot do the same amount of activities I could do before but yes try to do less than what you think you can manage. I've been prescribed with pregabalin which seems to help, talk to your GP and ask for pain medication. You can also get steroid and nerve blocker injections to help with the pain. And also it can really feel that you don't want to do anything and you are so tired and in pain, but I found that a little bit of exercise helps! I try to do pilates when I am able to, but again too much exercise is also not very good as it can be very painful.

It's no surprise you're feeling devastated, OP. It's one thing when you've been dealing with it your whole life as I have, having never known anything different, but I imagine coming to terms with it after a previously clean bill of health must be incredibly hard. I'll leave the discussions on differential diagnosis to the many brilliant PPs who have already covered it, and instead answer as if it was a certainty. I think this applies to many chronic illnesses, anyway, so I hope it might be helpful to hear.

It is hard. As you've said, you can have a few good weeks before it hits again, and those cycles often feel relentless. But it's not set in stone. I have friends with fibromyalgia, and another with ME/CFS. They don't just have good days and bad days, but good months and bad months, and good years and bad years. During a bad time it can be as you describe, only a few good weeks at a time if that, but during better times it becomes a lot more bearable. Not easy, but bearable. Catching any other illness can make fibromyalgia flare up, so I imagine the chronic UTI can't be helping matters, but it's unlikely to stay exactly as it now for the rest of your life. As well as physical illnesses, it's important to keep on top of your mental and emotional health too. I'm not saying it's "all in your head", I know fibromyalgia is an illness with very real symptoms, but stress or depression can trigger flare-ups with many chronic health issues. I imagine it feels impossible in the wake of a very difficult time, but accessing support will help you feel better overall. Some kind of talking therapy could also help you process your feelings about the diagnosis, as well as hopefully improving your mental wellbeing to prevent stress-induced flares.

Sometimes illnesses like fibromyalgia can be a case of swings and roundabouts. If you can find coping strategies and treatments to prevent one symptom you might end up developing another, but it's a case of figuring out which elements you can best handle and which treatments work best for you. No, fibromyalgia is technically considered incurable, but that doesn't always mean untreatable.

So no, I don't think you're being unreasonable at all, you're responding to a really difficult and traumatic time. Give yourself permission to be upset, and angry, and devastated. Give yourself the grace to grieve.

This group on FB are so knowledgeable. You should join @Whentherainwashesyouclean

I think it's very reasonable to be feeling exhausted and overwhelmed by this situation but I don't think a 'fibromyalgia' diagnosis (it's not a diagnosis as such but a catch-all for distributed pain and fatigue) is helpful in this situation. It sounds as though lots of your symptoms are down to your very severe, chronic UTI and as others have said there may be something else diagnosable going on so definitely push for more tests.

I have back issues scoliosis and bulging lumbar discs. When the pain increased I googled and suspected arthritis in my right hip. GP huffed but sent me for an x-ray. Said your hips are fine. Another year passed I was on two sticks. Lost patience phoned GP surgery having researched a private consultant. They were awkward saying a referral was not an emergency so phone again tomorrow. I argued I don't need to make an appointment I just want agreement for a referral. Receptionist wouldn't budge.

Ten minutes later phone rang the GP who agreed to refer me.

Two weeks later saw the consultant who looked at me, then looked at my x-ray done on NHS. Sent me off to x-ray then and there. The radiographer was lovely. Took a series of pictures. Came out and said you're stage four in right hip ball has migrated out of socket and your left hip isn't far behind.

But I said a year ago my NHS x-ray said everything fine. Well it would was her reply, taken at that angle. I admit I broke down because finally someone believed me.

When I saw the consultant again DH and I, he showed us the x-rays, my right hip the ball was eaten away, completely detached from the socket drifting upwards.

I'm a very angry woman now. I don't trust my surgery at all.

Find a somatic therapist.

All the chronic energy diseases can be based on childhood or trauma issues.

Whentherainwashesyouclean I had the chronic uti for a similar time before starting treatment and I really empathise, I'd never felt so low. Are the antibiotics helping?

I'm very interested in this. I don't have long covid per se- just a shit immune system following covid last summer. Is that the sort of thing this treatment deals with @FateAmenableToChange

I had a (male, they’re always male) GP diagnose fibromyalgia years ago. They’re just trying to get rid of you. If I press in the fibro places they are all really painful - but I’m not exhausted or tired or anything else. It’s all just bullshit.

Rheumatology refuse to see you in our area if GP has diagnosed fibro.

For the joint pain I also found eating a load of capers every day for weeks really helped.

My sister got diagnosed with this after splitting from her husband. As soon as she got past the grief she suddenly was recovered - no issues again. It’s a label given when they don’t know what’s wrong, and it’s usually a mental illness cause

This is exactly what's happened to me- covid last July, felt awful since with the symptoms you've described.
Sorry I can't be much help- I've been to the GP, had blood tests because I keep succumbing to viruses which liiiinger- and bloods all fine. I haven't pursued it further as I know they won't be able to help.
I'm going to be completely honest- isn't fibromyalgia just a diagnosis of exclusion? I've always been very sceptical of it, yet here I am!!
I don't mean you're not ill- believe me, I know you are, but my take is that it's more a post viral "thing" and it's put us at a very low threshold for anything and everything, and I don't think it helps that you have a diagnosis that's not even proveable test-wise but has sent you into a panic! That's only going to make you feel worse. And there's a very definite emotional side to this- and I don't mean just being pissed off with being ill.
Obviously I'm just speculating and we can never rule out other causes- but gosh! your symptoms mirror mine.
I'm going to have 'flu and covid vaccines this winter- didn't have either last year and was v unwell over xmas and some months after.
I honestly think it's covid that gave me a battering last year and now my immune system is playing catch-up- and getting beaten back down again by various other viruses which I'd normally have better immunity against- hopefully the vaccines will enable me to catch a fkn break!
So I don't even mean long covid per se- I just think it's a battered immune system that can eventually recover.
I wish you well.

Try some anti depressants.

I was diagnosed with fibromyalgia a few years ago and the symptoms were so bad. I could hardly get out of bed some days and kept getting the flu or similar on top of it. I eventually went to an osteopath, when my back went, who discovered I had a tilted pelvis and after a few sessions of that my symptoms have pretty much all cleared up, and I see them every few weeks for a top up. My theory is that with all the energy my body was using up trying to keep me upright, it didn't have the energy to fight of all the viruses, so I had plenty of post viral fatigue to deal with.

Although I do still get a bit tired quicker than what's normal, but I feel that is just the residue of having carried all that pain and illness for four or five years and I'm hoping that continuing treatment and taking it easy will get me back to full strength. Gardening has helped me strengthen back up also.

Hi, that all sounds very hard going. I haven’t read any replies, but my tip would be to start HRT if you are over 40. Game changer for all of those symptoms. My best friend was crippled with pain and was diagnosed with fibromyalgia too ; after a while she started HRT and commenced Pilates. She is so well now

Hyperbaric oxygen treatment gave me the biggest breakthrough with long covid. I did 20 sessions at my local MS society.