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
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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.
References:
Fibro Women Blogs
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Chronic Illness Blogs
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Official Fibromyalgia Blogs
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Fibromyalgia Stores
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Thank you…..it’s such a relief to read your words…and gratitude beyond thank you.
Sronan
This sums it up! I’m stage 6
Good luck to you.
I am in stage 6…the final act? I have learned many things about my body…I can react to it with dread to love….this is very challenging because we are so aware and focused on everything. Living compassion.
I just struggle seriously with 2 things feeling quilty
a) towards my family thinking I’m always whining or complaining so I sometimes keep quiet. Then I’m asked what is wrong as I’m not talking to anybody.
b) most of the times just with myself not doing anything, physically being on my bed….. not being mentally stimulated by doing something constructive
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Thanks for a good article. I have stage 3. My prayers are for those out there suffering from any disease. Being in constant pain sucks! ?
Thanks for laying it out. I’m post chemo and couldn’t figure out why I still had so much brain fog after a few years passed. I’m between 4&6 stage.
I’m a diffinite stage 6 fibromyalgia person. This journey has long and hard my husband left could no longer work! I’m living with my parents at 51 !!???☹️??
I am in the same situation as you except my husband hasn’t left me yet, I have no idea what I will or can do when I have no one. I’ve been trying to get disability but still not there, my lawyers have me suing the Judge and starting all my disability over. I have to fill out a new packet and it’s almost impossible to fill out on top of trying to get ahold of my lawyers office to get my information on everything I’ve been through, doctor appointments, letters everything. If you don’t mind me asking have you gotten disability? I am so sorry your going through this since I understand what your going through.
Thank you for your post. I am definitely at a 6… It feels like it’s been forever that I have felt this way. Not normal is how I feel. And it’s hard to get other people who don’t have it to understand what you’re going through.
I am in my early 20s and I am in stage 4. Without my meds I would be in stage 6 by now. Kind of scary to think about at my age. The statement “pain does not know age” is my most popular response to people older than me claiming I am too young to be in pain.
Hi Des,
I’m so sorry about the fibro beast taking over your young body but you correctly state that pain knows no age. Damn the pain.
I wish you well and hope that the medical world finds help for you, and all of us fibro warriors, soon.
I was diagnosed in my early 30’s. I’m now 53. So 20 years of it & I still hear comments like the “young age” because I look much younger than my age. But I tell people “Well, I’ve been blessed on the outside but not the inside or I might look young outside but I’m around 100 on the inside”!
I am a stage 6 no hope hurting 24/7 life ,breathing is a chore,
Hi, thank you so much for this. I’m at stage 3.
I’m in Stage6 and have been for quite some time. I’ve been sick so long I have given up most everything at this point, just work with each day as it comes. I had to quit my job, it took me 14 years to get disability and still grieve my former life. Thanks for this info, best I’ve ever seen.
I am in stage 6 and have been for years. Just when I start thinking I can do something, it gets shot down.
I am in stage 6 and have been for many years. Just when I think I can do something its shot sown fast.
I feel like I’m in stage six, but I still continue to work full time cause we can’t make it on just his income. I’m lucky enough that my husband and grown daughter are understanding when it comes to my fibromyalgia. I’ve had a really bad flare up going on for about 6 weeks. I’m extremely miserable and yet I get up every day and so up for work. I’m also a crafter. But here in the last week or two I haven’t even been able to do that. Because my hands hurt so bad not to mention the rest of me.
I just struggle seriously with 2 things feeling quilty
a) towards my family thinking I’m always whining or complaining so I sometimes keep quiet. Then I’m asked what is wrong as I’m not talking to anybody.
b) most of the times just with myself not doing anything, physically being on my bed….. not being mentally stimulated by doing something constructive
I never thought about stages, but you are so right! It’s taken me about 30 years to reach stage 6. For the past 15 I’ve forgotten what it’s like to feel healthy. I had to quit a job that I loved. I no longer was able to suck it up and power through. Been to several doctors over the years as I searched for answers. All said to exercise, eat right, sleep, lose weight, and see a counselor.
I am stage 6 and have been for a long time. I have had fibromyalgia since before 2000. I also have many other health issues which complicates my fibromyalgia. I very seldom get out except to go to the doctor and to go to Walmart once a month. When I do I am out of it for several days. Luckily I have a supportive husband and daughter who help me out a lot.
I have been disabled since 2003.
I am a 6. I have had fibromyalgia at least 50 years. Started at 18, maybe earlier. Back then it was “all in my head”, but I knew it was more. It seems to run in my family, sisters, brother, aunts, cousins, nieces, so darn many. I am grateful for treatment and the caring of some of me health team. I am no longer allowed pain meds because of the actions of few. I have gotten used to it so I suppose I was a bit guilty too. But I hate that there is no relief from the pain. It is nearly constant. Nearly? Make that constant. I have forgotten what pain free feels like.