Stages of fibromyalgia!!!

[Tiny09]

Just a quick question ive been hearing alot about there being different stages to fibromyalgia. Can anyone help me and explain it

[desquinn Partner Volunteer FMAUK Trustee]

no one will be able to as it is a journey everyone is on that is individual to them. Some common waypoints but people may hit them in a different order. There is no linear progression and interventions may make it take a different path.

[Tiny09 in reply to desquinn]

What are the waypoints!!

[desquinn Partner Volunteer FMAUK Trustee in reply to Tiny09]

points on the way to continue the journey analogy.

[Tiny09 in reply to desquinn]

Right now i get you, tbh i dnt even know where am at with it, but i know 1 thing is for sure i dnt wanna be seen as disabled i wanna be seen as someone who has a chronic pain condition. If i seen myself as disabled id think that would be the point i give up and am way way way of being ready 2 give up this fight x

[desquinn Partner Volunteer FMAUK Trustee in reply to Tiny09]

I would not consider my self disabled but I am less able than I once was.

[Tiny09 in reply to desquinn]

Thts how i look at it but am becoming to realise wot I can n carnt do anymore

[Cat-Lady20 in reply to Tiny09]

Hi I know a lot of people feel that admitting being disabled is a defeat but I’m 24 and I had to realise that I am disabled by my condition and that made me strong enough to know what help I needed and fight for the help I deserve. But I don’t think it meant I was giving up the fight.

[Welshcatlady in reply to Cat-Lady20]

I'm a lot older than you at 66, and I wasn't too keen to admit that I am disabled, but as you said I am and as soon as I accepted that fact, I knew what help I needed, I think the worse thing was admitting I need to use a Rollator when out and about, I was embarrassed, but after the first few times it was OK again, and that certainly didn't mean I was giving up the fight either.

[Cat-Lady20 in reply to Welshcatlady]

I remember when I first got a Rollator I totally agree I felt embarrassed and self conscious. I also learnt that not all pavements are smooth enough for a Rollator. I have to say having bright fun coloured aids makes it a bit better, I now enjoy my bright red rollator and purple walking canes.

[Welshcatlady in reply to Cat-Lady20]

How lovely brightly coloured aids. I have been thinking about buying a new stick, I will definitely buy a colourful one. The one I have is black, it was only about 7 or 8 pounds, didn't spend a lot because I wasn't sure if it would help. And yes some pavements are awful, and going over the bumpy bit at a dropped curb is dreadful!

[Cat-Lady20 in reply to Welshcatlady]

Definitely treat yourself to something that looks nice, also walking sticks with built in torches are a great help and not too expensive online. I got most of mine on amazon.

[desquinn Partner Volunteer FMAUK Trustee in reply to Cat-Lady20]

Just to add that I would not have an issue with being classed as disabled but do not think that I am. Also I think it is important to recognize that with the variety of people affected and the variation in how people are affected by fibro then there will be people ona spectrum from fully able to very disabled.

[Allsaints49]

I live with fibromyalgia but other than my family and friends no one else would know that I am in pain all the time. I work, have a family, I cycle and go out for walks. It is possible to lead a full life with this condition. There is a chance to improve if things are really bad. I recommend a pain management course, it is very helpful and arms you with different strategies to manage the pain.

[Tiny09 in reply to Allsaints49]

Am waiting on pain management classes when everything opens up again

[Hidden in reply to Tiny09]

Check with your pain management I have a phone call every month and if meds need tweaking then they do it for me. I can email them with any problems and they call me right back my PM are working remotely from home.

[Tiny09 in reply to Hidden]

Yeah am due a call on the 10th September, since i got a proper diagnosis my gp has put me on amitriptyline again 35mg at night, but last time i spoke with pain management i wasnt properly diagnosed if tht makes sense it took 4 pain management to send a letter to my gp to get a proper diagnosis

[Hidden in reply to Tiny09]

Yes exactly they tweet my meds and send it to my GP in 35 hours but when it’s soo painful I don’t think there is a lot that I have found completely takes the pain away I hope you get some help.

[Hazel_Angelstar Administrator FMA UK Staff]

I think a lot of the confusion comes about because of articles shared on social media/groups etc which states the 6 (or maybe it's 7) stages of fibromyalgia.

This article is based on something written by one person, and it is based on their personal opinion/experience of Fibromyalgia with no actual medical basis to back it up ...

If you were you ask a health professional about these stages, they would be unlikely to know what you were talking about

[Tiny09 in reply to Hazel_Angelstar]

Tht makes more sense as it was a facebook comment about there being 7 stages and i wondered what that was about.

[desquinn Partner Volunteer FMAUK Trustee in reply to Tiny09]

Dr Facebook is way worse than dr Google. Many more malpractice suits

[Broadfield]

I don't know about stages. Mine started slowly and as I have had ME for 25years it was difficult to differentiate between the two. They are very similar pain wise. I'm not much help as I am poorly with them both, I have to use an electric buggy to get around and was on crutches untill I saw a different GP who put me on Duloxetine. It's all about pain management because if you can get on top of that you can smile 😃all day 😊

[Midori in reply to Broadfield]

Absolutely!

[sarahgrace]

There are no stages just flare ups. Everyone is different. It's a case of knowing what your capabilities are and pacing.

[Sosbach]

Hi Tiny09,

I think the different stages are more internal, yet still v real. For me it was a bit like the Kubler-Ros notion: 1st stage denial (disbelief, eg going to different doctors trying to get a different diagnosis), next stage anger (why me/unfair/ etc) next, I went through a kind of ‘exceptionalism’ stage: I’m different (‘special’), I will beat this through sheer force of will and changing diet radically, research, research, self-experimentations ( but only looking for complete CURES or nothing), even magical thinking -ad nauseum....But finally you get to the acceptance stage, real acceptance ( and I guess some much-needed humility, for me) and this is when management strategies started to actually work. If you can make lemonade from lemons, it can be a journey of greater self-knowledge and compassion.

[harmony2]

Helpful comments, #sosboch! I agree.