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 found they make me spaced out and I can’t function like that as a single parent. I’m not after medals.

There are some studies showing that liquid herbs are more effective for managing UTIs than antibiotics. If you saw a naturopath and came off the antibiotics, then replaced your gut flora with probiotics, you may find the fibromyalgia symptoms lessen. Long term antibiotics can cause other issues (including anxiety / depression) due to killing beneficial gut flora.

I know a lot of people who were told by GPs they had fibro and it was indeed lupus. Then people with “diagnosed” fibro telling me it was worse than lupus… all fair enough till I pointed out lupus can actually cause full organ failure and kill you… to my knowledge fibro cant. I have severe lupus. Was lucky to be diagnosed as fast as I was and placed on treatment (which started to make me go blind but hey hum.
OP you defo need to see someone other than GP for confirmation..: and like others have said, there’s no test as such. It is literally something you are told you have when they don’t know what’s actually wrong with you. It’s also not the end of the world. A positive attitude and geeking up on nutrition and following your own bodies lead, can make a massive difference.

For the persistent UTI have you tried also eating cranberries. Google it. Cranberries can stop the UTI causing bacteria sticking to the bladder wall. I'd eat them in conjunction with the antibiotics.

We only get a 30 min lunch break at work, no tea breaks. I can’t drive so have to walk there and back but I do get shopping delivered. I couldn’t afford a cleaner unfortunately. I spend most weekends resting to compensate for the week!

Not sure what the others are but coeliac was normal.

So sorry to hear you are unwell op. Michaella Mazzoni is an amazing nutritionist and has fibromyalgia. She became a nutritionist to heal herself and has turned her life around. Worth it to have a look on her website, she may be able to help you.

www.michaellamazzoninutrition.com

Herbs can’t cure bacteria unfortunately. The bacteria have embedded into my bladder wall and created a biofilm. Only high dose, long term antibiotics can eradicate it. I see the top specialist about this. (Which is why I can’t afford anything else at the moment 😂)

Would that not have shown in my ANA blood test though? That was what the gp said. That my autoimmune markers were normal.

I was also diagnosed with fybromyalgia and like you I was devastated. I saw two rheumatologists and numerous professionals as I found it very hard to accept. I had a young family and was working albeit with a lot of time off sick. I was later diagnosed with CFS also. I had a very difficult few years before I was able to start to get a hold on the conditions. I have had a lot of support, I attended a course at my local pain clinic it was one to one with a physio/OT which helped in my understanding, attended the local pain group meet ups when I could and I am currently attending an online course with the local ME/CFS clinic which is reinforcing pacing and calming the central nervous system through breathing and meditation which is also what the OT at the pain clinic recommended. I would say like other posters to make sure you have not had another illness missed/misdiagnosed, to see a rheumatologist for diagnosis of fybromyalgia (if you haven’t already) and to get your vitamin levels checked and do some research on what they should be. People with fybromyalgia are prone to low vit D, my gp told me mine was slightly low but at the time I was seeing an osteopath who was trained in nutrition and she explained that it was actually very low as guidelines are not upto date. Taking vitamin d and vit k made a big difference at this point as low vit d was causing me additional pain more time off work it felt like the pain was in my bones it was terrible. I still take the vitamins recommended by the perrins technique which is for CFS but I feel they help me overall, I cannot say if they will help you as they are recommended for CFS but they help with making my overall wellbeing feeling slightly better along with magnesium at night and an iron tonic in the morning for energy. I also take low dose naltrexone which has made a huge difference. I still get flare ups but they don’t last as long. I still have to pace and rest an awful lot but I’m coping a lot better. I’m still in work but working from home mainly (ask your workplace for an access to work assessment ) and no longer having prolonged periods of time off work due to flare ups. If I had to physically go into work every day I wouldn’t manage. If your role at work means you cannot work from home see if your workplace can offer you an alternative role. If work are difficult seek advice from your union if you are in one, you will be covered regarding disability discrimination legislation if work are difficult. I still can get set back quite easily, any virus/additional illness will really knock me, and recovery is harder than it was so it’s possible that your recurrent UTIs are contributing to you feeling bad, I would push for a referral to a specialist for that. A late night will set me back or any increase in activity in my usual routine, I gave up alcohol as it would take me days to get over a small amount but that could be the CFS as it’s linked to alcohol intolerance. I have also changed my lifestyle a lot I really only try to do what’s necessary now. I got a cleaner as I have to chose what I use my energy on. I go out if I have to and it’s family related, don’t see friends much but I keep in touch by text and they understand. I do regular facials and look after my skin which obviously doesn’t help with fybromyalgia but it boosts my mood and makes me feel better! It can be lonely but there is support out there, try to get a referral to your local pain clinic and read up on techniques of management. Look at vitamins and low dose naltrexone. I am the same with exercise, short gentle walks is all I can manage. I did private Pilates for a while as I couldn’t keep up with a group any longer the teacher was great we did very very gentle movements but it is an expense I can’t manage at the moment. I also go through bouts of having acupuncture which I find helpful but make sure you get a good practitioner. This helps especially with headaches and chronic pain (another diagnosis). I am seeing the physio at the CFS clinic soon who runs a gentle exercise class online. Duloxetine was helpful for a long time but the side effects became too much and it lost efficacy. There are other pain meds that may help talk to your gp. If you are on anti biotics long term I would look at a probiotic also. Sleep helps but unfortunately mine isn’t good with these illnesses but I notice a difference when I’ve slept better, try to relax at night no tv etc and hot bath this will set you up for a better nights sleep. Epsom salts are meant to be good, can’t say I notice a huge difference but I use them anyway. Elemis muscle soak as a treat helps with pain (it’s expensive so only bought as a treat) Hot baths for the pain in general (do gentle stretches in the hot water ) and a heated blanket to help with pain. Good diet like you already have. Out of everything I would say the low dose naltrexone made the biggest difference but it doesn’t work on its own it’s a combination and pacing is very important. Good luck you will get through this . Sorry for the long post but I’ve been where you are and I remember the feeling xx

GP's seem to be diagnosing people with fibro all the time. It's madness. Both my cousins were diagnosed by their GP's in the same week ! I also have quite a few clients at work ( I help with PIP forms etc) who allegedly have it but never seen a Rheumatologist.

Well it looks like antibiotics forever for you. Sorry to hear that.

Please take painkillers. I'm waiting for two new hips, both stage 4. But I'm supposed to keep moving so that my legs don't weaken any further because they do one hip and I have to rely on the other leg for a time. So I take the meds. Pick up my sticks, grit my teeth and totter around.

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

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

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.

Try some anti depressants.

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.

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

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

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

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.

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

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?

Find a somatic therapist.

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