The 6 Different Stages of Fibromyalgia, I have 3 Stage. What’s Your Stage ?

When being diagnosed with Fibromyalgia, one of the first thoughts to go through your head is, ‘Is this illness progressive?’

Many Doctors have done research into whether Fibromyalgia is a progressive illness like it’s sister illnesses MS and Lupus. However the jury is still out on this and many doctors will tell you that Fibro is not progressive. So if this is the case how come many of us, seem to go through six very different stages that Angela Wise wrote a post about. She believes there are stages of Fibromyalgia.

Stage 1

You have started to experience more pain and fatigue then you have had before and you’re not sure what is going on. You can hold a job and make it through the day but you know something isn’t right, you start researching and going to the doctor.

Stage 2

You are in pain a lot and taking anti-inflammatory drugs and/or other pain killers however you do not get much relief. You now start to accept the fact that this is something you are going to have for a while. You feel a lot of pain and are exhausted almost every day but you keep going and manage to hold down a job, still spend time with your friends and loved ones and have some good times here and there.

Stage 3

You’re in constant pain and you’re constantly tired. You wonder whether you will be ever able to function normal again. You are considering not working because you no longer have the energy you once had. You come home from work and all you can do is rest. You start to turn down invitations from friends and family just so you can rest to go back to work tomorrow. You start to feel more alone. More people are beginning to think you whine too much. This stage can last a long time, perhaps years.

Stage 4

You are unrelenting pain all the time, good days are now few and far between. You are calling into work more then you can make it in. You’re in bed a good portion of your day. When you do have a good day you take full advantage of it and do as much as you can, knowing you will pay for it tomorrow. By this time your friends start to make plans without you, they already know your excuses and are nearly certain you will not join in. People start to thing you are using Fibromyalgia as a reason not to do things as in stages 1-3 you were able to do a lot more then you can now. You feel alone, isolated, worried, emotional, sad. This stage can last years.

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Stage 5

You have already quit your job or been let go due to ill health. You are asking loads of questions about permanent disability and how long it takes to get it. You may have a person who takes care of you and spend a lot of your day in bed although you still take full advantage of that one good day once in a while. You’re very sore, you cry a lot and feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels food to be invited even if you don’t go. You find the only people that can relate are those in the same predicament however you wish your friends and family could understand.

Stage 6 (The Final Stage)

You may or may not still be waiting for your disability pension. You cannot hold down a job. Fibromyalgia is now your lifestyle, most of your friends are those living with fibromyalgia themselves. Everything you do takes all your precious energy including simple daily tasks you took for granted in earlier stages like; going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes. You get irritated by your hair or clothes touching your skin, you have no energy or desire to put on “your face” before going out and no energy to keep a neat home. With all the medication you are on now or have tried, you are dealing with loads of  side effects and constant pain.

You are a human and still enjoy some things, like watching TV so you try to stay current on any news regarding Fibromyalgia, in hopes they are closer to finding a cure. Most of your old friends are not around anymore, as they have things to do and families. However you need to rest a lot. It’s easy to feel overwhelmed in this stage, because things are piling up around you: bills, laundry, dishes. You do a little everyday, you push yourself so you don’t feel like your day was wasted in bed, you feel guilty that you no longer pull your own weight in the house. Your kids, spouse or family do things for you more than ever. They try to do it in a nice manner but you still feel like a burden. You can’t remember anything, cannot recall names or dates and you lose your train of thought mid-sentence. Also you know more about Fibromyalgia in this stage then your own doctor and basically laugh when trying a new medication. You are without hope, same drill as before, same results, nothing helps much.

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35 thoughts on “The 6 Different Stages of Fibromyalgia, I have 3 Stage. What’s Your Stage ?

  1. I’m in level 6. I was diagnosed in my 20’s & I am now 62. I just try to get up every day & do the best I can. Most doctors just want me to go away.

  2. I’m at stage 6 as for medications none work for me so don’t take them. The side effects for me drag me down even more.

  3. Level 6, no one understands and I just can’t even pretend to feel good anymore just to suit family or friends. A lot of family and friends are gone since I can no longer DO for them, as now I am useless.

  4. 40 years? I thought it was a new illness?
    I have had it for 5 years. I feel horrible waking up with no medicine in my system. Exhausted and can sleep for days.

  5. I moved through all six stages from 1999-2004. My advice to get a supportive Neurologist. Stay active to keep fit and find the best pain relief possible. Medical Marijuana is the best for me as all the other meds made me sick. I still use opiods though when the pain is most unbearable, this is why you will need a supportive Neurologist. The worst part for me is losing my mobility slowly over 20 years but I refuse to give up. I have a cane, a walker, and a power chair to help me. Swimming and water aerobics have been the best exercise for keeping fit. I also have a Service Dog that has been my saving grace, she gives me a reason to get up every morning and chases away the depression that tries to set in. Mindfulness and meditation has also been a blessing as I never get caught up in “oh poor me”. It sucks but you have to suck it up and enjoy everything in life.

    1. I am in your boat too and found having a positive attitude like you do helps with everything! Keep up the good fight pain warriors! Good can always come out of bad. 😇

    2. Im sorry you have fibro. I just want to say , even i am proud of you. Its hard to do whats needed when ppl dont even feel its real. You give me hope. I just have to figure my way out of the fog. Keep inspireing please!

    3. Thank you for being so honest about everything. Many people I’ve spoken to, even my husband’s Dr & I’ve been told what you see is what you get. I’m a nurse & have cared for very few with fibromyalgia. I can only read so much but it’s people like yourself who say exactly how it is. I understand what to expect.
      I’m so sorry you’re going through this. I wish you happiness & the warmest hugs. Nicky

  6. Sorry Cheri Bennett. Those doctors you saw are so wrong. But you’ve got a great attitude. We can only do the best we can.
    I’m in Stage 6 as well. Was diagnosed at 31 and am now 63. Reading the Stage 6 here is the story of my life. I try hard not to think of what I can’t do, and look for things I can do that bring me some enjoyment. It’s a struggle.

  7. I am a 5/6..I am over weight and I am falling down..6 tmes in the last year. ..I just fell Mondsy
    I hurt my wrist elbow ect..I am depressed

    1. HI Barb,
      I started falling, and found my kneecap was out of place, and wasn’t
      caused by my fibromyalgia. Just a thought..

      Good Luck,
      Bonnie

  8. Definitely stage 6 now. Diagnosed with “ it is all in your mind dear” from 1967 to 1997 when I finally got a diagnosis. Currently 67 I am mainly bed bound and have to rest or sleep up to 20 hours a day. On the odd good day I use a powerchair to get out and get some fresh air. I can recognise all 6 stages from this article and know when I went from one level to the next over the course of 50 years. I no longer have any support from family or friends and have to rely on state supplied “care” for the most basic support. I am allowed 45 minute per weekday, none at weekends.

    Most nights now I pray that I will die in my sleep.

  9. Stage 6. Diagnosed in 2002. Taking one day at a time. I also see a neurologist. Fell outside on concrete Saturday evening. Fortunately no fractures and nothing broken…just what I needed…NOT!

  10. I guess stage 6. I was told when I was diagnosef that mine was very aggressive and very progressive. I am blessed to have an amazing husband. Nuepro patches have been a saving grace for me especially bc I need to find a new pain doc and have been off all narcotics since the end of Nov and Jan. And our temp insurance made me go 7 weeks without lyrica and then dropped my dose by 300mg. So not feeling like a great mom at the moment. Lol. Try and keep a journal. You will find certain foods will trigger worse attacks. The cleaner you eat the more it helps. Food prepping will be your best friend. Take 1 day make a bunch of muffin omelettes, boiled eggs, roasted veggies, brown rice, chicken. Very simple recipes that you can cook all at the same time and will last u a week and freeze easy as well. God bless and good luck y’all. Gentle hugs

  11. I am on stage six. it makes it even harder people don’t understand, they think oh you just have a headache .get over it…. I wish it was that simple 😷🤯🤨

  12. Oh snap! I’m a 6 😱 keep thinking tomorrow I will be better and will have the energy to do basic things. Today I brushed my hair. Then I had to take a rest. 🙁

  13. Me too !! That’s my Fibromyalgia women’s movement cry.Litterally I have 36 years and counting!(when I can remember how old I am!)

  14. Definitely stage 6. Living with it since 2005 have lost my job am allergic to most meds plasters anesthetic food chocolate and alcohol but I try meds that are more natural like folic acid and magnesium bad thing though it effects my liver so I have to deal with that, Does not take the pain away but I try and make the best of each day. Bake wedding cakes now for a living so I am grateful to get up and finish a cake and deliver and just enjoy each day and thank God if I am able to wake up and get to do what I need to do.I try and keep possitive by doing what I like and when I like my kids understand it and have learned to adapt to it after I lost my husband three years ago. I even travel when able.Try not to think about it so that it does not make me feel house and bed bound, know it is proberbly will not work for every one but works for me.

  15. At a stage 5 maybe 6. I have to keep moving to keep my mind off it. If I can’t physically get around very good I’m on a computer keeping my mind off it. I feel like people dont understand. My family is trying but it makes it hard when you dont even know yourself. Now I get a ringing in my ears, noise drives my up the wall. Or maybe it’s the pain when I loose concentration. Thought I was just being a bitch until I seen it was a symptom.

  16. I’m 38 I was jus diagnosed last fall but have been dealing with it since I was in my 20’s. my dr…. who seems useless… put me on a series of meds only to create more problems. And just a few months ago I got violently ill, now most my pain is gone, I can walk again, after spending much time on the couch and getting to the point of barely being able to climb stairs. Now I mostly just deal with exhaustion, unable to get any financial help I’m working on finding a way to make money to survive…..definitely a 6. Everybody just seems to think I’m lazy and never hear what I say about how I feel, dr included. Before it got bad I did housecleaning, with many clients made decent money, gardened, rock climbing, kayaking, etc etc. I was very active 100 lbs soaking wet. Now i have no job because I am unable to do anything that requires lots of energy, I’m overweight, depressed and useless.

  17. I am in stage 6. I laugh when people ask if i have good days. They just don’t happen. I am 69 now i believe that the longer you have the illness your body gets exhausted from all the pain and of course the usual chronic fatigue. My body just doesnt have the strength to fight it anymore. I am totally worn out. But i get up everyday shower qash my hair put my make up on dress smart because it makes me feel good about myself. I do the garden, as much housework as i can, cooking. Just all in small amounts. Sit when i need to, sleep when i need to. Go to the village cafe. People ssy are you better now you look really well! They dont see the inside crying and hurting. Missing the person i used to be. But i believe in making the most of the life i have. I smile to help me and it helps others. Looking and being in miserable is just a downward spiral.

  18. I’m in stage 3. Always working on my pain, because I don’t want to consider quitting my job. Thankfully I have friends and family that understand completely and support me in everything. Even when I only want to seat back and rest, then they seat with me, because for them what’s important it’s to make me feel better and loved. Instead of not having people around what’s stressful for me is that they never leaves.

  19. I’ve had it for about 20 years and with in the past 3 year I had a real bad flare up of stage 4. I was put on Savella and went to a chiropractor and physical therapy that specialize in fibromyalgia. That worked really good for me. I wanted this feeling to last longer so I looked into a herb called ashwagandha which helps in so many different ways. I also started taking Sero Vital hgh. With all these things in place, life with fibromyalgia is bearable. I have more good days than bad.

  20. Stage 6, left my job when I was 50. I’m 64 this year and I’m still dealing with this almost all day long day after day. Found CBD helps with sleep. Pain medicine helps me to keep moving. Important cause I have rhematoid and osteoarthritis. Like many I have many other conditions. DDD, IBD, GERD, IC, just to name a few. It’s hard, getting harder, I keep moving.

  21. I started experiencing significant symptoms at age 21, diagnosed at 25 and am now 50. I was in stage 6 by my miid 20s however I worked as a teacher 9-3(Ilooking back I don’t know how I did it with extreme fatigue and pain) long story short I was definitely in stage 6 until I my late 30s and then something strange happened. The symptoms began to decrease just a little every year. Today, while I still have flares if I “break the rules” I have many many more good days than bad. My psychiatrist attributes this to what he calls “ fibromyalgia “ffizzle out”
    I myself believe that when I started talking Effexor at age 30 my symptoms while very slight, decreased just a little every year. It took years to notice but every 5 or so years I would notice symptoms improving. Has anyone had this experience? FYI I was sick 24 hours a day from 21-37 with diagnosis of interstitial cystitis, IBS, migraine headaches, chronic fatigue. It’s just been in the last 10 or so years that the symptoms really decreased significantly. If too much info I apologize.

  22. Kim Bowman, that’s terrific that your symptoms have decreased. I am 30 years in and have not heard of that. It is so difficult trying to explain this all to people. Not always having the same symptoms makes it hard for people to comprehend.

  23. I refuse to give in every day is a battle and I just keep braking. I’m in stage six but have held down my job and apparently I dont get any benefits. I am always on empty but never show it at work. Just at home I have nothing to give to my husband and son. I can sleep any where at any time and I always lose my words. I have been trying to come off the tazanadine but think I might have to go back on it and wves good by to my speech and any family time and the ability to walk. I have been in therapy for 8 months and it is helping I need to work on what it feels like to be content. This is not like me I strive for more and better as for the last 30 years every day has been a battle.

  24. I first noticed my FM in 1973 after starting Chiropractic care, it began between my shoulders and has since progressed to my entire body. Walking up stairs is the worst! My quadriceps constantly ache and I can’t run even five steps.

    I think FM has been around forever, but some doctors still don’t believe it exists. (Wonder if it was them or in their family, what would they say?) I am probably a level 4 or 5 … I went on disability 10 yrs ago, and now at 67, I dread the rest of my life. God bless you if you have it too.

  25. I am stage 6 and I’ve been in denial for 12 years and have been living in a drugged induced haze for just about as long. To top it off, I also have a blood clotting disorder, that after 20 years my doctors have yet to tell me what it stems from. I’ve thought about suicide a lot as my pain has gotten worse and my pain meds no longer work effectively. I’m just tired of struggling trying to get through a day without pain. Now my neurologist has told me that one of the pain medication s I’m taking(4), is causing me to struggle with my weight. I must say my grandson is what keeps me going and living to fight another day so onward and forward I must go!!

  26. I was 32 when diagnosed but believe I’ve had this since I was a child. I can remember going shopping with my mom and younger sister. After a few hours I was the one begging to be carried or please let me ride in the basket because my legs were screaming with pain. They called it growing pains. I’m now 57 and have been thru all kinds of meds. One day a doctor said you must live your life with energy on a budget. I was already used to living on a monetary budget so that clicked. I workout, have a small planter flower garden on my porch one beautiful grand baby I enjoy. What gets me down is the barometric pressure, extra stress, changes in my diet, ok anything that changes, lol. I’m also a 12 year breast cancer survivor, I did chemo after reconstruction. You can imagine the whirlwind that put me into. I’m also in stage 5-6 according to this writing. I miss a lot of work, I go in at 6am!! And I’m 5 years away from retirement!

  27. I am stage 6. Have been for a couple of years now. Most everyone around me knows and comprehends. There are some people who still look at me like I’m crazy. I am allergic to most of the medications for it. I don’t take pain medicine so I smoke pot instead when it’s a really bad day. I don’t work anymore have since 2015. This disease is a thief. I no longer have the life I used to and it’s depressing. It’s also demeaning to have to ask for help all the time.

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