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 am so sorry that happened to you.

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

Yes it was a GP.

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

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.

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

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.

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.

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 ?

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

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.

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

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.

This

I was referred initially to rheumatology and then I had nearly two months of no symptoms so when I got a message asking if I needed the appointment still, I said I did not. Stupidly!

Have you had your homocysteine and MMA checked and Gastric Parietal Cell test ? Coeliac test ?

Make sure you are taking vitamin d, k2, magnesium, and a good fish oil.
Mackeral and oily fish are great.
I eat tinned mackeral as its so easy.
Olive oil is good for joint pain and you need to keep moving like yoga on YouTube every day for 10-15 minutes.
Lots of stretching.
Use it or lose it is what I keep telling myself.
Walking regularly if you can.
Keep exercising your legs.
Try not to sttess about the future.
Focus on what you can do today.
Drink green tea once a day if you can.

Thank you.

My diet is filled with these foods and has been for as long as I can remember. Kind of makes me think I should have just eaten the cake 😂

I am on Utrogestan, Everol patch and estrogen cream for atrophy.

Holding off taking pain relief when you are in pain is just silly. As doctors say, there are no medals for it. Being in pain will also worsen your fatigue as it drains you.

I do all of those things. I walk for an hour a day by going to work and back too.

My friends can’t believe any of this has happened to me as I’m the healthiest of the group by far!

Folate is pretty low, this will effect b12 significantly, you can still be deficient despite having a 'normal' level. This doesn't mean b12 is reaching your cells. I had the same symptoms as you, (not the UTI) and the fatigue was like I was half dead, could barely function.

Ive had FM for about 35 years and live a completely full life. I work full time, have 3 kids, go out lots. Its taken me a few years to get it right.

Things that help

1. Resting when exhausted, even if for a bit
2. Not being on screens too much
3. Not eating even a molecule of wheat
4. Acupuncture regularly
5. Exercise (it kills me for the first 20 minutes and then it massively improves- I play tennis, football, walk a lot and swim)
6. Balancing blood sugar by intermittent fasting. Total game changer.

I have fibromyalgia along with lupus and I’ve been diagnosed 15 years, but I probably had it for years before that.
I would recommend that you ask for a referral to a rheumatologist and get full autoimmune blood tests done. As per previous comments, fibromyalgia only gets diagnosed when everything else has been ruled out, and not by a GP.
I also agree with other comments that you need to pace yourself and rest before the exhaustion hits - when you feel like you’ve been run over by a bus.
If you’re at work can you have a rest at lunchtime or tea breaks? When you get home can you have a half hour lie down? Can you get someone to do your cleaning? Do your supermarket shop on line? Don’t try and get everything on your to do list done in a day- work out what is critical.
I take a tiny dose of amitriptyline at night which helps me sleep - there are several meds that can help, but it’s a matter of trial and error to find what works best.
My best advice is ‘let whatever you’ve done in a day be enough’

Yea I know. Great diet here too.
Was very pissed off too.
But if you have had lots of antibiotics your gut has taken a hit.
I find the pain makes me very cranky, so am trying to manage that with mixed sleep.
Stay away from tomatoes too.
Broccoli and spinach are two to eat regularly..

My friend makes a sludge of ginger, turmeric, black pepper, cinnamon, pinch of cayene, crushed garlic clove with honey.
Its a brown gloop.
She has a teaspoon of it with hot water a couple of times a day.
She feels its good.
Can't do her any harm.
I need to start it myself.

Last thing, suck a single clove before sleep for 10 minutes. Suppose to help