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Chronic pain

Fibromyalgia and uti

17 replies

Anniecott · 13/07/2021 13:32

So I've recently been diagnosed with fibromyalgia I'm on 50mg of amitriptyline which to be honest is doing very little for the symptoms, I'm also on topiramate and candesartan for chronic migraines, I take codeine phosphate to manage my pain.
On Saturday at work, I started to feel like I had cystitis coming on but within the hour I was literally on the floor rocking, vomiting and crying with the pain, (I have a high pain threshold due to living with endometriosis for yrs ) I couldn't wee and I felt like I was going to burst, my husband came to get me and took me home.
After several hours of this, and still not being able to wee I ended up in a&e, blood tests, scans, drip and catheter, I was discharged with the catheter still in and antibiotics for a chronic infection and am awaiting a follow up appointment with urology.
All of this has seriously ramped up the fibromyalgia pain.
Yesterday was my day off and I've taken today and tomorrow off sick, I'm a hairdresser so I stand a lot but it also really hurts to sit. I don't know wether I should go back in this week or give myself a break.
Has anyone else had this with fibromyalgia and if so what was the outcome?

OP posts:
Akire · 13/07/2021 16:42

Not for fibro but it’s normal have catheter for two weeks when this happens. Think mine was 2 weeks then Back at clinic for more test and removal and it had sorted it self out was an infection.

How comfortable do you find catheter? Are you on a bag as well? Can you drink
Loads at work and get to bathroom to empty when you need?

Lots of auto immune illness trigger various infections and your body goes wobbly. I’ve not heard it being said particular with fibro but hopefully someone else might have more experience.

Anniecott · 13/07/2021 17:50

Thanks for your reply.
I have the valve not the bag.
When I'm busy as I am at the moment, it is awkward to drink as much as needed and visit the toilet. It's a standing joke in our salon that it's a good job we don't have time to drink as we definitely don't have time to see.
I'm finding the catheter very uncomfortable, I'm very aware it's there if that makes sense.
I was actually planning on working today it was my manager who told me to take the time off.
I just don't want to make a big deal of it, l'm not very good at knowing the appropriate response to illness and myself as I always tend to play it down.

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Akire · 13/07/2021 19:11

I remember it well, it’s not painful but it is uncomfy. I don’t think I wore pants when had mine but more unpractical at work! I would say look I’m happy to come back to work but I do need drink a lot and I will need pop to the loo as and when I need every 45min or so. Hopefully they will prefer that to you being off totally. Normally anti bio for UTI knock people for six and make you feel sick and headache etc so not like you are not ill enough to be off sick.

When you live with chronic pain conditions it is very easy to think well it’s just pain crack on what’s new. But that doesn’t mean there aren’t times that you do need rest and take extra care of yourself.

Akire · 13/07/2021 19:13

Any tips from someone who’s given themselves two lockdown haircuts and still has messy uneven hair Grin

Grainjar · 13/07/2021 19:37

Amitriptyline can cause urinary problems. Have a look at the side effects. I have both fibro and frequent UTIs. You have to plan to prevent it. Nettle tea is good if you retain. The supermarkets do one called "Cleanse" by Pukka. I drink a huge cup of that in the morning. Cranberry juice or D Mannose stop the bacteria reproducing, so you can stop an infection with them. That way you can sometimes avoid needing antibiotics. The problem is, your infections can become immune to the antibiotics after a while. Yours sounds a bad one. I would take a few days off until the antibiotics start to work for sure, especially as you're on your feet all day. Long term look at changing the Amitriptyline to something else. I hope you feel better soon.

Anniecott · 13/07/2021 21:27

Thanks again, your right I am very good at thinking oh well it's just painful, nothing new, it was actually the reaction I had to the pain on Saturday that led my husband to take me to a&e, I got through labour making less fuss and noise 😂
The stupid thing is my boss has said I can take as long as I need off, so there is no pressure from work to go in, and I am very sleepy, probably from the continuing pain and the antibiotics and if I needed to restructure my day to suit my needs that also wouldn't be a problem, I'm just crap at putting myself first and hate to feel like I'm letting people down.
I have already thought I need a review on my treatment for the fibro as I'm getting no relief currently and the side effects seem to be getting worse, I will look into those preventative measures as I don't want to go through this too often.
@Akire as for the hair apart from either growing it or getting it cut professionally there's not a lot you can do. X

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Akire · 13/07/2021 21:40

The hair thing was half a joke ..honest Grin
If your boss is that supportive then take rest of week off. Then your body can know it can rest. I find even if I spend all day doing nothing but thinking I need to do xyz. I’m not half as much rested if I spend all day doing nothing and I tell myself you are just resting today! So you brain shuts up making you feel guilty.

Do also join us on regular daily chat thread on our new shiny board!

Anniecott · 18/07/2021 17:12

Soo, I did take the rest of the week of, thank god as had to have the district nurse come out to me on Wednesday night in the early hours as the valve kept coming off the catheter, she put a whole new one in, it all felt much better and she gave me a leg strap which really helped.
Then the itching started, nothing too bad, I got some cream, it calmed down.
Fast forward to today. I'm currently sat a&e again as I literally want to rip my foo out, it's burning and feels like it's dropping out of my body, it hurts to walk, stand, sit, just be!!!!, I have blood in my urine and I'm back to burning pain when I go, cause I'm also bypassing the catheter and wanting to go every 5 mins, to having nothing to show for it when I go and I have finished my antibiotics, I planned on leaving it till tomorrow to just speak to my gp until I saw the blood.
At this point I'm sooooo fed up it's untrue. My best friend, the one who I thought would always be there has disappeared off the face of the earth and I'm having a one woman pity party sitting here, waiting for my test results.
Sorry rant over.

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Akire · 18/07/2021 17:16

Oh no that sounds rough. Glad you are least one A&E and will get some more drugs and the like. Hopefully they can give you stuff help with pain too. Rant away it’s well deserved x

Anniecott · 18/07/2021 17:59

At this point I will take a full vagina removal if they offered it !!!!!!!
I'm not normally a tearful or needy person but this has really got to me, and last week when it came it started work I was working with my best friend/manager so she could see how quickly and severely I became ill, she has always been that friend that has said she would be there for me no matter what, we were each other's person, I rang her when we made the decision to go to the hospital to ask if she could pop over while my husband drove me up to keep my 18yr old autistic son company cause he was really upset and worried and didn't want to leave the house, she lives a minutes walk from mine, she couldn't as they we're about to think about getting some supper, she apparently adores my son and vice versa. I've never asked her before and I do it's a flat outright'no', she's barely been in touch this week unless it's work related, I know me being off has caused a bit of an issue, but she suggested it.
I'm just tired and emotional. X

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Akire · 18/07/2021 19:07

That’s awful about your friend letting you down. Not even a very good excuse is it. Sadly where chronic pain and illness is concerned you do find out who your friends are. Have they seen you properly or are you still waiting?

Anniecott · 18/07/2021 20:08

I know, and the irony is another friend who I had drifted apart from a bit recently has really stepped up, she bought me flowers round today and has been messaging me and my husband all afternoon.
I'm back home, fortunately no further infections just a really badly irritated site, which is why there is blood and apparently I've a very small catheter tube used hence the bypassing, they didn't want to replace it as I'm so irritated already and I've only got to have it for one more week hopefully.
I'm currently curled up with a cold flannel on my foo, I remember the days when Sunday was my big night out, down the pub dancing and drinking, how things have changed 😂

OP posts:
Akire · 18/07/2021 20:58

Glad you are home. Hope
You get some good sleep tonight. Suggest sleeping with fan on affected parts!

Akire · 19/07/2021 13:57

How are you feeling today?

Anniecott · 19/07/2021 14:53

Bless you for checking on me
I'm still in a lot of pain and weeing every 15 mins or so with blood in it, I've been sunbathing in the paddling pool to keep cool water on it 😂

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Akire · 19/07/2021 14:55

Ouch ouch. Sitting in cold water does help. Hope work still not giving you grieve!

Anniecott · 19/07/2021 16:36

It's made it a lot more comfortable and I'm getting a tan at the same time so double bonus 🥴
I've told work I won't be in till next Wednesday at the earliest as I have trial without catheter on the Tuesday and no way in hell am I able to work as I am, as I can't even stand up at the moment let alone drive to work and cut hair, they have been really good to be fair to them, just told me to keep them updated, I don't get paid whilst off sick apart from ssp, so it's a major financial hit but hayho at least the weathers nice. X

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