Stages in FM

Can any one advise me as to how many stages there are in FM , each time I get to speak to a doc they say you are xxx stage . I don't get to see my own doc till 22nd of Dec and don't really understand being so new to FM. Just wanted a guide , and I can ask her when I see her. Sorry if I am posting to much, and driving every one crazy. But it's driving me crazy.

Many thanks in advance. Hope you all have a peaceful night.x

28 Replies

  • I cant answer your question but do be assured no one will be upset with any number of posts, we have all been new to this. I hope you get some answers soon. Lou xx

  • I haven't heard of stages of Fibro before. Sadly I am not able to help you there but would you please post the explanation that your doctor gives you for those of us who don't know about the stages.

    I for one am very glad that you did post. Questions like you have asked are a way that we all learn 🐸

  • Hi sorebones, when I first found out no stage, then within nine weeks, stage 2 , then 3 . I am going to ask on my appointment and what ever I find out I will let you know.

  • Thank you. That would be great. Hope all goes well for you 🐸

  • Hi There Blue 52..

    I hope you don't mind me saying ,but ! I have never heard off stages of Fibromyalgia, love to know what your doc means, does he mean your condition is getting worse when he explains like that, .


  • Hi Jane I think that can only be the explanation, as soon as I have had my appointment and find out I will let you know.

  • Sounds like the doc has very little knowledge of Fibromyalgia, what is your doc talking about different stages?????? Go and seek advice from a doc that knows what they are talking about xx

  • I've never heard of this either, all I know is fybro gets worse the longer you have it, maybe it's just me getting older 😞

  • My rheumatologist has never mentioned stages of fibro and said unlike arthritis, fibro is not degenerative. However, I expect everyone would beg to differ on the last point.

  • Hi blue52, I have had fibro for about 15 years and have never heard of different stages. Would be interested to know more .

  • Hi Shazzy, I am going to ask my Doc what this means, and will let you know

  • Hi Blue52

    I too have never heard Fibromyalgia described in stages either. I can imagine that would be confusing, however we're always learning and maybe it's just not a term I'm familiar with.

    Take care

  • Please do not worry about how many posts you create it is what the forum is here for.

    I also, have never heard of Fibro stages. I have pasted you an excerpt from the FMA UK website on what Fibro is:

    What Is Fibromyalgia?

    Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

    The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

    Fibromyalgia is a common illness. In fact, it is more common than rheumatoid arthritis and can even be more painful. Prevalence of Fibromyalgia: A Survey in Five European Countries (see for details) put the prevalence of FM at between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

    If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

    It could be that this doctor has little or no knowledge of Fibro, as Fibro is not a progressive illness, it is what it is. Many sufferers have other medical conditions running consecutively alongside their Fibro (i.e. arthritis or migraines) that can be progressive or make them feel worse over time. If these medical conditions are not diagnosed then it may feel like their Fibro is getting worse. I want genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken x

  • Hi Ken, thank you, I am begining to learn a lot from everyone on here , and it's begining to make sense to me about what's what and how eachother differ in ability . You are probably right along with others the Doctor may not know enough about FM . I must admit most times when I have had a Telphone appointment , she would often say leave this with me and I will get back to you. So maybe I should come on here first and then tell her ha ha. Thanks for all your help.

    I hope you and your Wife are as well as can be today .

    Take care.


  • Good luck my friend, I genuinely hope that you can get some real effective help with your Fibro.

    Julie and I are fine thank you.

    All my hopes and dreams for you

    Ken :)

  • I am lost😳😳😳stages I have also never heard of it!!! I have been through research studies and they never mentioned stages???

  • Hi yes this is what everyone is saying, I think it must be at what pain level I am at, I will ask her what she means though when I see her.x

  • I'm with the others. Stages is a new one on me. I wonder if changing doc would be appropriate. Fibro's not so rare it's unheard of. So please do engage with your own doc, take a list of questions. Is this the one that mentions stages?

    And don't worry about driving us crazy. Most of us already are. This is what "support" in the title is about.

    So please RELAX and take it one step at a time. Stress is pretty well guaranteed to make anything worse and is mostly unnecessary.

    Hugs XX

  • Thank you, you are all very helpful, have a great day.x

  • I truly believe I've had Fibro my entire life. I remember as a youngster telling my dad that I hurt all over. His response, which was typical back in the old days, was that boys/men don't complain if they're hurting. It's part of life.

    He seemed to be saying that you were less of a man if you complained.

    My doctor asked me to discuss where I was currently in regards to my condition. I told him that I felt I'd been through 3 stages so far.

    One, when I was young, and it was manageable. Later on, in my 40s, when one day after playing Racquetball for 2 hours, the following morning I could no longer get out of bed without help. That was stage 2; for me that is. Stage 3, which became full blown Fibro when both of my parents died within 10 months of one another. I had to virtually give up everything related to physical activity. Walking down the driveway to pickup the morning paper became an incredible chore. Bright light and noise drove, and drives me off a cliff.

    I am now 68 and am ever so thankful I didn't get hit, with what I refer to as stage 3, when I was, say, in my 20s. To contemplate a full life of dealing with this level of pain would be dreadful.

    Perfect example; yesterday, when I got out of bed I felt better than I had in 6 months. 3 hours later, the "beast" was back. I struggled to get home from the store, but once I did, I closed the blinds, turned off the lights, and sat there for hours stroking my cat until the flare settled down. Never experienced this type of debilitating pain at state 1 or 2. And to describe it briefly, when I have to wear my underwear inside out to keep the seam from rubbing against my skin, that's when it's really bad.

    Thankfully I'm a strong person, because if I wasn't, having to deal last year, with a Fibro flare, torn rotator cuff, and Shingles at the same time was a real treat.

  • Sorry I seem to have missed this one, reading on what every one has sent me today, I believe now if Docs state level this or that, and reading lots of links being sent, it is the way you are feeling or how your pain is developing from time to time, I think the Docs mean if you are experiencing diff problems and new ones arise , possibly that's their way of saying stages. That's why it confused me. But I get to where you are coming from, I didn't know either had this years , kept making up excuses for my self. Docs confuse us ,as we confuse ourselves, it's good we all have this site and we can learn from eachother, I have certainly learnt a lot today and have much to read up on from people on here that have sent me links and have found it so helpful . I wish you well and I Really hope the shingles have gone, know how long they can last, father in law still has them 3 yrs down the line. take care.

  • Again whenever heard of stages. But what I can tell you from a nursing point of view is that if it were a degenerative disease (not a syndrome which is a collection of symptoms!) Is that it would show in the extensive sets of tests we all tend to have when fibromyalgia is eventually diagnosed i.e. blood work,scans, etc so try not to worry.many des prob have no more understanding than we do x

  • I am getting to learn this scoop, seems a hard one for them to Fathom.

    Have a great day.x

  • Hey scoop, I am now learning that some Docs after today are using stages as a result of how pain is on that day, that is why I got confused, I think they might say to patients , as they did me because my pain measure was worse and in diff places it was a measurement of pain. I have had links sent to me today and lots of replies all about the same as you may have read. Must be frustrating for you lol knowing what's what, but we don't all know Hun and we are all learning, but it's thanks to you as a nurse to help us too. And we are grateful for your input as you are in the no. Xxx

  • Sorry should've said drs not des! Ha ha

  • I wonder if your doctor was referring to this: (cut & pasted from UkFibromyalgia.

    Quick Help - Fibromyalgia Check List

    2) Obtain FM diagnosis from your GP.
Widespread pain index - Determined by counting the number of areas the patients has felt pain in the last week.

    The checklist includes 19 specified areas. 

    Symptom Severity Scale - Determined by a rating of 0-3, 3 being the most pervasive, of the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional 0-3 points can be given to account for the severity of other common symptoms such as nausea, irritable bowel, numbness, dizziness or depression. This gives a final score of 0-12 points. 

    Fibromyalgia diagnosis would require:

    * 7 areas of pain and a severity score of 5 points

    * or pain in 3-6 areas and a score of 9 or more

    The symptoms must still remain for at least 3 months and not be part of another disorder.

    I'm new here too, but read your question and remembered seeing this.

    Carrie x

  • That's great Thanks Carrie, this could well be what she meant, because each day a new thing reared its head and within a few weeks it hit quite a few areas, this bout has lasted nearly four Months. This is really helpful. Xx.


  • Hi Tracey, sorry to hear you are going through a bad time. The link below explains the pain index better with a diagram and easy to understand scale - well, I found it easier to understand!

    Take care, Carrie x

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