The Seven Stages of Fibromyalgia. What is your Stage?

Stage 1

You started experiencing pain and fatigue more than before, you’re not sure what is going on but you hurt and you are tired. You can hold a job, you can make it through your day, but you know something isn’t right… so it’s something you’re going to start researching.

Stage 2

You are in pain a lot, sometimes taking an anti-inflammatory drug or what have you. You do not get much relief, and you have accepted the fact this is something you are going to have for a while. you feel a lot of pain and you are exhausted almost every day, but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones, and have some good time here and there.

Stage 3

You are in constant pain, you are constantly tired, you wonder whether you will be ever able to function normally 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 have to turn down invitations, you have no energy left and you have to rest up just to go back tomorrow. In this stage you start to feel more alone, and more and more people are beginning to think you whine too much. This stage can last a long time, perhaps years.

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Stage 4

You are in unrelenting pain all the time, good days are few and far between. You are calling into work sick more than you even make it in. You are in bed a good portion of your day. When you do have a good day you take advantage of it, and do as much as you can, all the things you have left in the past weeks you cram into your day, knowing well that tomorrow you will be paying for it. Your flares last for days. By this time your friends make plans without you, they already know your excuses and are nearly certain you will not be able to join in. Your family begins to think you are using fibromyalgia as an excuse to not do things, because stages 1-3 you were able to do much of what you just can’t do now. They think you are using your illness as an excuse, you feel alone, isolated, worried, emotional, sad. This stage can last years.

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Stage 5

You have already been let go or have quit your job, you are asking questions about permanent disability and how long it takes to get it. You have heard horror stories about people being denied and the process taking years. You are struggling to make ends meet. Maybe have a person who takes care of you. You spend a lot of your day in bed, although you still take advantage of that one good day once in awhile. You are sore, very sore, you cry a lot, you feel like a prisoner in your own body. By this time you have already explained to your friends that it still feels good to be invited even if you don’t go. You have found that the only people that can relate to you are in a similar predicament. You wish your friends and family could understand.

Stage 6 

You may or may not still be waiting for disability pension. You cannot hold down a job. Fibromyalgia is now your lifestyle, most of your friends are living with fibromyalgia themselves, everything you do takes all your precious energy, simple daily tasks you took for granted in earlier stages, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes, take all you can give. 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, no energy to keep a neat home. With all the medication you are on now or have tried, you are dealing with side effects and constant pain.

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You are a human and still enjoy some things, like watching TV. 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, they have things to do. 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.

Stage 7 

Anger and Refusal

It sort of is for most of us. We dont think i will every yield to this horror, and we will continue to search for answers for reasons. its all can do. I refuse to believe this horror of an illness just randonly happens.

The original post that inspired this page was written by Angela Wise and posted on her page in 2014

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14 thoughts on “The Seven Stages of Fibromyalgia. What is your Stage?

  1. Stage 20 been living with fibromyalgia since I was 22 I am now 51 this illness has made me do stupid things like trying to take my owe life 4 times someone always found me was even in a coma for 4 days on life support thankfully I have a hold of my depression and haven’t been that stupid since 2016 and I will hopefully never try it again. My biggest wish is that they find a cure or at least find something that helps living day to day I live most my days on my couch and I hate it, good luck to anyone out there that suffers from fibromyalgia its living HELL!!!

  2. Stage 3 trying hard not to call off work because I need my job, I need the insurance too much. So I just try to make it through the day… every day.

  3. I’ve lived with this bitch of a diease for 7 years now. I feel as though I am between stages 3 and 4 currently. Because of Fibromyalgia I now have several other health problems that just make things even worse. I have days I can’t even get out of bed because of the pain, the stomach problems. My hands and feet go numb for no reason at times, I’ve even just suddenly dropped things from my hands because of the numbness and pain. I was on over a dozen different medications daily until I lost insurance. Since then things have just been an even worse downward spiral. I’ve lost several jobs because of this illness and it’s reprocusions. I’ve filled for disability several times and been denied Everytime. I feel hopeless and defeated majority of the time. My friends and family don’t really understand how I feel daily or what I’m going through and I know most of them think I’m jus a big faker. I wish this desease on no one not even my worst enemy. To all those suffering from this hell we call Fibromyalgia I wish you better days and restful nights. We are warriors we can and will survive 💪

    1. I hear you. This is hell. I am stage 5 and my family makes me feel like I am whining. I do not even mention a pain or issue anymore, but it is so lonely. I am now getting severe pain in my left hip that radiates to my knee. It gets so bad that I wake up screaming. It does not help my knees are gone, so walking is out of the question. So weight is in the question. I have found that a cream such as Ben-Gay and then the heating pad.
      As for the disability, Social Security almost always turns down the first and sometimes the second request down. I had an attor hi7ney help. They help you file and handle everything. They tell you if there is anything they need you to do. I was approved on my 2nd time: around. Do not give up on it. Once the claim is paid, it is paid back to the date that claim was issued. Contact these attorneys:
      Heard and Smith 877 606 3737. As far as fees, if and when you win the claim they get 30% not to exceed $6000. If you are turned down completely they get nothing. Once approved if you are in the low income category go to social services. There is a plan in every state that will pay for your supplement fees on the health insurance.

      1. Are/were you allowed to work at all while waiting your decision from SSI? I’m struggling to get through a 22hour week. Have fibromyalgia and arthritis in different areas of spine requiring injections. Any info/advice would be greatly appreciated. Thank you.

  4. I’ve lived with constant widespread deep aching,burning pain(full torso,neck,limbs,feet,& even back of head for over 10-11 years @ its worst.I also suffered from mid to upper thoracic,lumbar spinal hyper mobility daily(5-6x’s day continually cracking joints/vertebra for 1st 10-11 yrs. before FINAL 3 spinal surgeries brought on by a severe quarry work injury.Had constant trauma leading up to it & AFTER a heavy equipment accident,dr.(small d!) misdiagnoses & an additional 10 months of non restricted work trauma until I was forced to leave my union job in 2004.I continue to live with deep burning throughout my torso from pelvis up throughout torso into shoulder blades,neck & down backs of arms,sides,chest,stomach,thighs,etc. even after spinal fusions L3,L4,L5,S1,2 surgeries(1st in 2010 failed)2nd-3rd surgeries in 8-2014 helped some.# 3 was through left side to spine.Had a wedge place above L3 in attempt to correct badly tilted(jarred 2003 accident) pelvis in 2014(11 yrs. after 1st 12-13 orthopedic surgeons as they were called) & 6 mid thoracic nerve carterizations in 6-2015.I am no longer hypermobile DAILY but approx.1-2X’s a week @ mid thoracic.Drs. haven’t a CLUE.I live still with chronic widespread burning & deep pain over 16.5 yrs. now.HAVE GIVEN UP ON DRS.!MOST ARE COMPLACENT ASSHOES!I have been told by MANY therapists I have fibromyalgia.Drs. not even getting back to me over 1 year since new MRI’s.They honestly can’t find their ass with both hands!I pray for anyone suffering from these complications that are taken SO LIGHTLY by MANY!

    1. Hi Ron, I was also genetically born hyper-mobile when I was little I was told I was, in layman’s terms, double jointed. That was that I was great at sports I was also great at falling on my face because of my hen toed feet knocked knees & all round clumsy child unless I was climbing and then a wolf couldn’t catch me. Anyways I was firstly diagnosed with M.E which is now being interchangeably used with Fibromyalgia by the medical professionals but my point is back when I was talking about my hyper mobility as that then progressed into Hypermobility Syndrome, a genetic disorder which both my parents carried and is now seen as Ehlers Danlos Syndrome (hypermobility type). Anyways I wonder if you yourself may have a connective tissue disorder that hasn’t been considered as it has been with physiotherapists are, in my experience, the best people to understand the Connective Tissue Disorders.
      There is more research and understanding about the Ehlers Danlos Syndromes in America than Britain, it’s just a thought or a road you have already travelled but take care one and all.

  5. I have had fibromyalgia as far as I know since I was 12 am 70 sorry no matter what you do it comes back and each time worse than the first Iam at a stage now every inch of me hurts

  6. Ive had fibromyalgia since I was 20 something I will be 51 here soon I have suffered many days lost many jobs I can not take meds I’m allergic to them I found a wonderful doctor she had me stop eating meat, dairy, and processed foods for 1 month and slowly add that back in and keep a journal on how I feel … I am now plant based no meat no dairy and hardly anything processed I still have my bad days but some how I don’t feel that tired I do have some more energy I have been plant based for a year and a half I hope this helps someone as much as my doctor helped me

  7. I was diagnosed first with MS. I tried 5 MS meds and none worked. They injected my muscles with Botox to which I had extreme burning that felt like 100’s of bees stinging me, they lasted for weeks in the injection sights. They did spinal taps and Evey test in the world. I lost my vision in one eye due to a benign tumor that they thought was from MS, it was not. The pain in the trigger spots hurt all the time like someone hit me with a hammer. I have the brain fog and every symptom but about 3 of them. This is a horrible sickness. I only take gabapentin and Ibprofin and medical marijuana that takes the edge off. I have hypothyroidism and take levothyroxine. I have lots of depression and anxiety and take medicine for that. I am at a loss and just push through the days.

  8. great info . ive suffered for 3 yrs an und 1 yr diagnosed. G.P.s an medical professionals need the awareness as they rlack knowledge refuse support n help and want you to live on pills sleep n stay in bed or on a sofa .

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