Is it normal to be so confused

[misscharlie2]

Hi I'm new here and just looking for bit of advice, I have recently been diagnosed with fibromyalgia, I have been working reduced hours but things have not got better. Work is making it worse I feel exhausted constantly I can't think clearly I feel confused to the point of concern. Pain is constant. I had time of work in Feb for 6 weeks, which made a difference to memory and fatigue. However now I have returned I am back to the point before I was off. I just don't know what I should be doing. the rheumatologist I saw told me to exercise on good days and I'm trying but I don't have good days. Feel I'm having a mental breakdown. Is this normal?

[Rach_SW]

Hi I’m new here too... I completely understand how you’re feeling I’ve been there myself. Ask you doctor to refer you to a pain management clinic and see if you can get some more help from them

[Makie-Uppie in reply to Rach_SW]

Yes, you will find a lot of that on here. I have only been signed up for a few weeks and already have found quite a few kindred spirits. I do not work any more, there are days I can just about manage to get my clothes on and I don't think it's depression. I have three great kids and they are OK, so I'm happy. So that leaves something else is terribly wrong and no one seems to know what. I used to have 3 jobs and really enjoyed working, some of the people were not so nice but I mostly ignored them, but that life is long gone, all thanks to my imaginary illness.

I should read and edit before I post, to give you all a chance of understanding my ramblings.

[Blue1927]

Yes I often feel confused, it’s a horrid feeling on times. I had to give up my job just before Covid began, worst decision I ever felt I made at the time as I loved my job, my colleagues and the animals as I worked part time in a vets. I could no longer cope with tge pain, concentration etc etc. Now I know I made the right decision, not working allows me to take my time, less stress about having to get up at certain times and following schedules. I do feel I can manage my daily living a bit better. Your not alone in feeling like this. Please ask to be refereed to a pain management clinic, my Rheumatologist sent me to a physio and she helped by doing gentle stretching excercises. I was meant to go on a 4-week course run by the same physio, but it was cancelled because of covid! Apologies I do tend to waffle a lot xx

[LoneEra]

It sounds like your body is telling you to slow down. Is there any way you could take a couple more weeks off work? And maybe talk to them about additional reasonable adjustments when you go back?

The exercise thing is hard. Know entirely what it feels like not to have a good enough day to do any. But even on the worst of bad days, it’s important to stretch. This can be done sitting in a chair if you don’t feel well enough to stand x

[Midori]

Welcome to the Fibro Mighty Club (nobody wants to join!).

Yes, when you are new to Fibro, it's very confusing; the pain, stiffness, total exhaustion, memory lapses and the dreaded Fibro Fog.

As you began to understand it things won't seem so puzzling, and you will learn to cope.

If you have friends, partners etc., who think you are being lazy or hypochondriac look up The Spoon Theory on the Net. It can help you explain it to people (and your GP if necessary!), and it can also help you understand the condition yourself.

Most of the time I operate with minimal spoons, and just need to rest regularly. It is fairly easy for me as a retired person, but if you are still of working age it can be very demoralising.

I found with young children that it could be quite a challenge. I learned not to be too houseproud, as it is nearly impossible to keep it all up together. Now, what gets done, does, and what doesn't can wait till tomorrow. If you can, minimalise your possessions so there aren't too many knicknacks around.

Keeping what fitness you have can also become a challenge, but it is important to keep as much fitness as possible.

Cheers, Midori

[Jegreen]

Hi misscharlie2,I am sorry about how you feel, I get a similar confusion especially when the pain is constant. Please be aware that when we stress to much about how we feel that really brings much more pain and make most of the days really bad. I can only say, I get better days when I manage the day and try to be mindful and in control. Create your own mixture of things that can relief your pain and fatigue and make you relax, It works for me. In addition ti pain killers I drink herbal tea to relax and release the tension, muscle and joints creme, hot pad, cusihon are brilliant in bed to absorb some of the pain in the whole body, counseling and meditation like breathing excercises or pilates or talking regulary to someone who understands is very helpfull. No one can do everything everyday but just be patient on yourself and don't push too much

[Yassytina FMA UK Volunteer]

Hello and welcome, very hard for some people to juggle working with this condition and some do have to give up working all together in order to take things day to day and find a routine that suits the individual, having a chat here helps us not too feel so alone with daily living and knowing people genuinely have shared empathy . Have you seen your doctor lately for a catch up as completely understand how you feel with your mental well-being and differently seek some help xx

[saluhouse]

Hello misscharlie. Welcome to the club nobody wanted to join. Think we are all bewildered by the constantly changing painful symptoms.

Sometimes I think I live with an internal alien presence. Coping with it all Is like trying to nail blancmange to the wall!

But there are experts on here who can help. Not professionals - but real people who know about medication/exercise/pacing/stretching/and every thing else fibro related. They can even help with claiming benefits if that’s what you need.

So my advice is keep reading the posts and try to stay positive. One things for sure - nobody will ever tell you to pull yourself together.

Best wishes xxx

[misscharlie2]

Just want to say thank you all so much for the advice it has helped a lot. Even just known that this is normal, although I have read about brain fog my memory issues were becoming concerning . xx

[samanthajl]

First time posting on here so hello everyone!

I'm currently in the process of leaving work unfortunately. I'd been off on furlough since March 2020, went back to work last Monday, did one shift and have been in bed since. It's horrible isn't it. I've been reading a lot of blogs/instagram posts etc and a LOT of people are saying that when they left their work and took the time to focus on themselves and their health their fibromyalgia pain eased a bit and they found they could think more clearly. If you can afford to leave I would consider it, it's a bit of a fight to get benefits etc (I'm currently going through that now) but everything I've read seems to be positive about leaving work and like someone mentioned here listening to your body.

Hope you're okay

x

[Josie-Anne]

Hi h un,

I do feel for you but this is normal for people with fibromyalgia, I’ve even forgot my grandson’s name and that’s saying something, your brain doesn’t stick off through the day nor through the night so you get exhausted so you get more pain, you can get a migraine because your tired and you can’t think straight it’s a vicious circle, please download from google all about fibromyalgia, your family and friends and boss need to know all about fibromyalgia and what it does to you, so if you were going out with a friend and then you have a flare up they will understand instead of getting disappointed with you and you don’t loose some of them like I did, I’ll copy you in on some of the things I’ve got, plus it does affect your unitary tract and can can water infections, cystitis, bowel problem, food allergies, IBS is most common with fibromyalgia people, good love ya I’ve had it 17 years now, if you need to talk I and fellow fibros are here for you, this is what this site is all about, helping each other ❤️👍

Photo of rib cage

[misscharlie2 in reply to Josie-Anne]

Thank you this helps me understand that it can affect memory badly I mean I’ll have a shower and I can’t remember if I washed my hair! I work with people with varying degrees of dementia and I am just like them at times.