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

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.

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.

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

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.

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.

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

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

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.

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

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

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

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.

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.

I was diagnosed with fibro many years ago and it comes with many other conditions. It's taken years to find the right "cocktail" of drugs to ge able to manage it. Also I had CBT therapy and a pain management clinic. I find magnesium supplements. CBD gummies and massage help. It's not curable but it is manageable.

Sorry about your news. It’s hard to have a long term pain condition. Do ask to see pain management to help get on top of it, and also keep on at rheumatology to rule out other seronegative conditions. I had negative ANA for a few years and was diagnosed with seronegative RA initially - until ANA got caught positive in a recent hospitalisation when we also noticed a face rash and now they agree it’s likely lupus. At least in my case I was already on the right medication but the dose needed adjustment. I’m still not totally convinced what it is, but it’s always frustrating when bloods are all negative and you feel you aren’t being listened to. So, sharing as perhaps worth asking if they can keep the option of other autoimmune conditions open and have periodic blood work in case it changes.

Thank you so much for such a kind response. I’m so pleased you have found some acceptance and are on the most part, doing well.

I work in education in a primary school so I’m not able to work from home. It is exhausting and stressful and full of germs which I don’t think helps. In the 21 years prior to getting the virus last year I’d never had a stomach bug etc. Now the slightest thing makes me ill.

The clinic said their regiment is 385 days of treatment. I also have to take an antiseptic called Hiprex alongside the antibiotics.

I am devastated about this also as I know what they can do to the body but there is no other way. I am back to see the consultant next month and hoping my infection levels have dropped so they can look to lower my dose.

I’m not depressed

The virus last summer definitely was the start for me. I was in peak health before it doing weight training and hard bootcamps 4 times a week. I can barely walk to work now without feeling like I’ve ran a marathon!

That’s quite an outdated understanding. From what I’ve read a stressful event or illness can trigger fibromyalgia, but it’s actually a nervous system disorder and patients have autoantibodies (that healthy people don’t) that makes them more susceptible to pain.

New research from the Institute of Psychiatry, Psychology & Neuroscience at King’s College London has shown that many of the symptoms in fibromyalgia syndrome are caused by antibodies that increase the activity of pain-sensing nerves throughout the body.
The results show that fibromyalgia is a disease of the immune system, rather than the currently held view that it originates in the brain.

They have definitely eradicated the most severe symptoms but i am currently in a flare which is a stark reminder of how bad it can get!

I am sorry you also suffered. How long were you on treatment?

Op, you said you didn’t want to take pain meds.

i was in an accident eleven years ago and have tried an extensive variety of pain meds.

i personally found morphine and codeine not helpful because I couldn’t really interact with the real world through them - they made me feel very spaced out. Like you I worked in education although I was in secondary.

there are alternatives.

the SSRI drugs are often prescribed for long term pain. They are anti depressants but the evidence is that they “turn down” the pain input into the brain. So I take duloxetine and long term (weeks and months) it really does help with the pain.

i have naproxen sodium (like a stronger version of ibuprofen) for days when duloxetine doesn’t manage the pain. It doesn’t give me that nasty spaced out feeling, the pain just goes away and I have more energy.

it’s worth you looking into what options you have.

Thank you so much for such a kind and empathetic response.

Place marking

I was just going to mention this. I was in Peri (unknowingly) and had persistent uti. Once I got on HRT (estrogen gel on inner thighs as high up as possible) it went. I also took pumpkin seed extract which definitively helped. Antibiotics did absolutely nothing except make me feel terrible. I rebuilt microbiome and took Garden of Life vaginal probiotics which were amazing. After becoming quite unwell post virally after flu I tested positive to EBV and did the Medical Medium EBV diet recommended by a friend which got rid of the post viral symptoms in about 2-3 months and I felt amazing. (Just to be clear I don’t buy into how/where he says he gets his information but the diet really worked for me!) https://uk.findthedeal.org/p/B07CZ5ZDFT?channel=ms-shopping&device=m&network=o&campaign=677443934&adgroup=1161086218216070&target=pla-4576167425043487&ad=72568236409348&ad-extension=&location=69090&msclkid=d87104201b0416785d356cf0fd119fe7