controlled Vs managed vs flare ups

Hi all

Hope you're having a good day.

I'm very new to Fibro but I research constantly on the illness! l read that the aim is to get the illness under control or managed and then deal with flare ups, thereafter.

I'd like to understand what does it mean to have it under control: 100% pain free? 70% pain free? No fatigue? Managed with no medication or with medication?

I understand it means different things to different people but want to recognise when I may have got there and what to expect based on other suffers' experience. I'm concerned I may have high expectations 😁

And are flare ups just when the illness comes fully back to same as before it was controlled or short period of illness?

TIA

X

[rosie-2015]

I've tried for over 30+years to get it under control, I've tried heat, cold pads physio, medication, ten's machine and many more but neither the doctor physio psychologist, has come up with a cure, I've accepted this and try to pace myself. I don't use good or bad day's but bad and worse. I'm sorry to sound all doom and gloom because it isn't like that, I like to think that I can manage it at times using the options I mentioned earlier but I haven't found a cure also we are all different and when I was first diagnosed by the rheumatologist I could do a bit more. I'm sure that you will get a lot of replies from other members we are a very friendly group

Gentle hugs Rosie xxx

[Hidden in reply to rosie-2015]

Thanks for sharing x

[snowyday2020 in reply to Hidden]

So happy to have a group where i can share info and learn from others

I am working on having a peaceful home. Not as easy as it sounds. I have to learn that i have an illness.

I have a - do not disturb - sign on my door. Hours of 12 noon to 2. And still hubby and adult son need help with something.

I tell them to come back at 2 and i will help them. It took about 1 month before my sign was respected. Just changing habits within the family

Wishing you a peaceful day

[Hidden in reply to snowyday2020]

I read you need to set boundaries. Unfortunately my relationship broke down because of the illness, so now it's only me and my daughter. I think this would work for us too!

[rosewine]

That it an extremely difficult one to answer and you are correct in thinking that everyone has their own interpretation. Some people can go for months with barely any pain have a flare up which lasts X amount of time and then go back to very little or no pain.

Everyone will have slightly different sets of symptoms so for example someone might have quite a low level of constant pain and a small amount of fibro fog but when having a flare they can hardly put two words of sense together. Some manage or chose to manage without medication and find complimentary therapies helps them more.

I was diagnosed 10 years back when I had to give up work as the pain was so intense but when I look back I have had a milder version of the symptoms since I was about 5. Initially nothing worked then I found a combination of meds that took the top edge of the pain off. One of them could make the pain quite a bit better but at the dose I would need would leave me so muzzy and zombified to me life wouldn't be worth it. I therefore have pain everyday. If I don't pace myself or have something like a virus all the symptoms get much worse.

The three doctor's and the pain specialist who have dealt with since being diagnosed all more or less intimated that it is something that has to be managed the best you can. Eg learning to live with the limitations of the illness and do the best you can.

I have researched the condition extensively and have been proactive in trying to manage it. It hasn't gone away and sometimes is very limiting but I do think I manage it better now than I did initially. x

[Hidden in reply to rosewine]

Thanks for sharing x

[Julesubu]

The other replies sound similar to my experiences. Must pace yourself against activity and pains. 20-30 mins of one thing, can build up and monitor effects. Its tempting on a not so bad day to tackle housework or gardening but if you then spend next X days in bed or unable to do anything it's not worth it.

Painkillers usually dont help if Fibro inflammatory and NSAIDS hard on gastric system etc. I have just started on CBD oil with good effects but limiting it to get me through work or trip out as not a cheap option. Rest when bad, exercise when better and just get to know your own condition.

[Hidden in reply to Julesubu]

Thanks this is great advice. X

[LoneEra]

Hi Hockers. Great question - but hard to answer! I would seriously recommend reading this article:

medium.com/pain-talks/im-no...

One of the most relatable bits from the article (IMO) is this: “For me, I struggle with pain and fatigue Every. Single. Day. That’s not just a little headache or I’m tired. That’s full body aches like you have the flu. That’s fatigue like you haven’t slept in 48 hours. That’s everyday. That’s my constant baseline. My normal existing is you on a sick day. Or hungover. That’s how I live.”

Honestly, “controlled” will probably still mean things are quite a slog. Like walking around wearing a suit made from lead! But you will get good days too where you feel semi-normal or at least can block out the fibromyalgia for a while.

But as everyone has said, it does vary a lot. Flares and the length of them also vary. Sometimes mine will be over in a few days, sometimes weeks and sometimes months.

I hope that helps, but feel free to ask more questions if you need further info xx

[Hidden in reply to LoneEra]

Thanks for sharing. X