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.
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.
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.
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.
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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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.
85 thoughts on “The 6 Different Stages of Fibromyalgia, I have 3 Stage. What’s Your Stage ?”
I guess I’m in stage 5 in a half ? leaning more to stage 6
I HAD THEM ALL UNABLE TO LAY IN A BED , SAT IN A CHAIR MOST OF THE TIME. USED A ROLL AROUND TABLE TO WALK. UNTIL!!!!! THE OLD FARMER DOWN THE ROAD TOLD ME, EVER SEE A DRUNK KNOTTED ALL UP?. HE TOLD ME GET A BOTTLE OF WHISKEY. SO I HAVE A DIFFERENT LIFE NOW.. I HAVE TO TAKE TWO CAPS EVERY FEW HRS. AND IT STOPS THE PAIN AND KNOTS. YOU CANT GO DRIVIN AROUND ON DAYS YOU HAVE TO TAKE IT BUT DO WHAT YOU CAN WHEN YOU CAN. I NEVER SAY ILL DO LATER ,I DO WHILE I CAN DO.. I CAN LIVE WITH THIS FIBRO NOW. I CONTROL IT. IT DOES NOT CONTROL ME// I HAVE LIVER TEST DONE AND SO FAR LIVER IS OK. LUCK TO YOU ALL. MOOMAW
Kindred spirit….I kinda do the same thing
I have two friends who have looked into fibromyalgia and try to understand. One still makes plans but it’s all very slow. My family do a lot to help but don’t understand and say I moan a lot even though I don’t usually tell them I’m having a bad day and don’t have the energy to even wash. I took on a dinner lady job which exhausts me but gives me the kick to get up even though a lot of the time I don’t feel well enough. I’m in constant pain and swelling and am on morphine and other meds that make me feel constantly drunk.
Don’t let it beat you! Stay strong everyone.
Think I’m 5-6 but have brain swelling, fibroids so bleeding most of the time eg 25/28 days. Hyper flexible mobility so my joints go 90degrees the wrong way bicornuate uterus (two wombs) pulmonary emboli so also on blood thinners and have broken 14 bones (in my life) so have aches from that.
I’m at full blown stage 6 after over 15 years 24/7 pain can barely walk most days getting dressed exhausted me for the day if l have a burst of energy when my pain medications kick in which usually only lasts for no longer for an hour I’m exhausted the pains worse and I’m in incompatible for days even weeks again. If l manage to sleep for an hour or two the process of trying to get up is becoming impossible most days without help. I can’t remember life without this horrific illness I’m pysically and mentally drained . This fibromyalgia is a nightmare?l thought it couldn’t get any worse now more health issues have emerged omg if there are more stages I’m done??
I’m in stage 6
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.
I feel the same way… it’s like they cannot help but don’t mind putting you down….
Think I’ve been all 6 lol apparently I’ve had this illness over 40yrs but only been diagnosed for sure just over a year 61 this year I gate not being able to do things like I used to and live alone so tend to stay in bed have to force myself to get out of bed ghate it
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.
Me too. I have stopped taking any of the painkillers they provide because I don’t like going through my life stoned all the time. I can’t really function much, but, I still get up each day and try.
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.
Hi Debbie I absolutely and completely understand where your coming from. Being a fibromyalgia sufferer since 2007. I feel I’m past level 6.
I’m in late stage5 and everything I’ve read is me! Now at my heaviest weight….. can’t exercise when you can’t move! my rheumatologist just give me the same old speach “this all I can do for you” is there anybody out there that cares! ?
Stage 6 also. My daughter has disowned me bc I create “instability ” for her and my granddaughters. The youngest is 6 months old and I’ve only seen her in pictures. It hurts bc she thinks it’s just excuses. I don’t make plans bc I’ve learned that just bc I feel good today doesn’t mean I will tomorrow. I also have ankylosingspondylosises (forgive the spelling). Both are painful, progressive and the AS eventually deadly. Neither have a cure. I responded to your post bc you know what it’s like to have family write you off bc they refuse to accept the reality of your situation. Thanks for reading this. At least I know there is others who truly “get” chronic, debilitating pain, depression, self disapointment and loathing bc there is very little you can do. Having your body in charge of your days, etc., isn’t for the weak! Again, thank you and God Bless you.
Hi Debbie. I can relate te to every word. Except I know you are not “useless”. I use to feel that way. Jehovah did not create useless people. Your words are of use to me. I know I’m not alone. Keep praying. And take care. You are of use to someone.
I understand. I have one family member in particular who has no understanding and has let me know he needs me to do what I have to in order to return to normal if I am to be in his life and that of his family. So hurtful. Almost everyone forgets about contacting you after some time. I am in stage 6 also. The way I understand the last stage is that it is having no more good days, not being able to work, either at a job or at home, needing help around the house and for yourself, not being able to do even basic things and being in bed most of the time. That is where I’m at, although I have some other health issues I deal with too. Wishing you the best.
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.
It is not a ‘new” illness. It is now gaining some credibility, but there are still doctors out there that think it is not real and “all in our heads”.
To some extent it is in our head… It is a Central Nervous System disorder, and in some circles, it is being suggested that it is an Autoimmune Disease. Our brains’ pain centre is constantly firing causing sensory (the constant pain, sight, sound, smell and taste) overload. All this together exhausts us. Sleep does not refresh us.
I was diagnosed in the early to mid nineties. I worked up until 2014ish. I am living, (ha!), on disability.
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.
I feel the same way. Swimming really helps me.
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. ?
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!
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
Remember to suck it up when you had it for 30yrs and you are in stage 6
Oh, Renate, I am SO with you! But I have not found a neurologist and use holistic medicine (herbs, oils, acupuncture, meditation) to control the pain. I have just begun investigating options to help me be organized in the midst of fibro fog. This includes Google calendar; smartwatch; Tile (for lost things); on-line grocery order, pickup, delivery; a wakeup routine that involves happy music and a “natural light” lamp; and a capsule wardrobe which I replenish on Amazon. When you have limited “actionable ” hours in a day, you need to plan so carefully!
I am also getting more involved with support groups.
I find that other people’s experiences are the most helpful resource. Sorry to say, I don’t exactly trust standard medical doctors. I don’t think they understand.
Thank you! Keep up the good fight, everybuddy!
Not sure what stage but medical cannabis has helped me too
Thank you so much for your information.
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.
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
I started falling, and found my kneecap was out of place, and wasn’t
caused by my fibromyalgia. Just a thought..
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.
How old can you be to have a power chair?
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!
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
Why do the leg muscles ache and get sore when going up stairs during a flair up?
Yes! I have this too! And I cannot sleep because my legs are very jumpy! I’ll follow this post.
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 ???
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. 🙁
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!)
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.
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.
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.
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.
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.
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.
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.
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.
I take Effexor and Savella together. Ever since I started Savella, I have been able to be almost normal, pretty much at about 2. Before that, I would come home from work aching so hard my hair hurt, and only a screamingly hot bath would help, followed by wrapping up in soft quilts. Once I broke a sweat, I felt much better. Abrupt weather change can throw me back into a day or several of aching and fatigue. I still have the fatigue and when it hits, it HITS. Whenever I feel wimpy about my condition though, I remember that everyone here has it far worse than I do, and I feel guilty. Y’all are all HEROES
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.
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.
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.
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!!
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!
Wow Tamara, when you said “growing pains” couldn’t believe it! I had the same horrible aching legs between the ages of 6-8 years old. Dr.’s said it was growing pain. In my teens & 20’s I had weird leg pains, more sharp but infrequent. If I did any kind of sport, every little thing made my ankles & legs hurt. I thought, “that’s weird for a person as young as I am” but never really had the money to see a specialist. It finally came to a head in my mid 30’s. Full blown flares and sleep apnea which I never had until the first big Fibro flare. Ever since then it’s been increasing with age and never stopped. My questions to the experts would be: Since we experienced some strange leg pains at an early age, was this something genetic? What made the Fibro become full blown for me 25 years later? What triggered it?
Congrats on your cancer victory! You’ve certainly been through a lot.
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.
Making people suicidal one article at a time. ‘‘Tis was very depressing to read. I now go long periods with minimal pain. Yoga. I taught myself through phone apps and YouTube. Start with 5 mins. Yoga for chronic pain. Yoga for stress. Change your thinking. If you dwell in it, that’s where you’ll be. It’s hard when it hurts but apathy only makes it worse. Meditate, I use sleep hypnosis which helps me get into a deeper sleep. If you’re still menstrating consider be that will stop cycle. Keep your cramped, tired, muscles limber. I also got a hot tub..free on Craigslist. Nothing is better than moist heat. All my best..what you think, you become. Yes
I was diagnosed 14 years ago and I’m about a 3.5. I would definitely be a 4 but if I called into work every time I felt that bad, I would lose my home as I am single. If I have to show up to work crying (which I have), then so be it but I have to be here. Tried filing for disability about 7 years ago but according to them, “I’m not sick enough”. All so-called Fibro meds either make me sick, don’t work or really mess with my brain. I’ll continue to march on. No one can ever know how we all feel and that’s a shame. I really feel alone sometimes in the world even though I know all of you are out there feeling the same as I do but still. Best wishes for all.
I was at stage 6, my quality of life was gone. 24/7 of feeling like I was being tortured 24/7. I had attempted suicide. After doing my own research, I began using medical cannabis oil, high CBD. Today, 3 years later, I am no longer taking any prescription pills, only cannabis. I have finally found relief and balance after 13 years of severe pain.
Well I think I’ve had it a long time too. I’ve been not so hot alot. Then 2 yrs ago,my world crashed around me. I also found out I had breast cancer. Had a mastectomy ,chemo,,radiation. I’m in a major fibro flare. I live in an adult family,not anything remotely mine,but it’s ok. I’m gratefully for what I have. Cancer was my primary focus for awhile. Then this fibro fare hit. I’m free for you guys if you want to chat. Oh btw , I just turned 70.lol
Im in stage 6. Glad I’m not alone. Get so tired of always trying to explain how bad i feel. I have more bad days then good. I wish there was a way there were test to show this illness. It’s real and life changing for myself and my friends and family. Wishing everyone the best.
I went from stages 1 to 6 in a short period of time. Was hospitalized for 33 days after contemplating suicide. The pain was that bad. Doctors didn’t listen. Finally got one that did. She was the best!! Got sent to a fibro specialist in my city. I was put on Cymbalta and it saved my life. Still have bad days for sure, especially after doing too much but at least now I feel like I know how to manage my pain. I learned what I can eat to feel better and I know that whether I like it or not, I need exercise every single day. This is my life and some days will be better but I refuse to go back to Stage 6 and most days I am not even at 1.
I am also stage 6. It has been a very long battle almost 26 years. Like many others there have been so many nights I have asked God why? What did I do to deserve this kind of lawful suffering without and relief all these years? If this is how it is going to be then just take me tonight. But I am still here. Though I am alone most of the time because of loss of friends & family I try to talk to others and try to help the ones just diagnosed. I suffer terribly because I take no meds now. I am going to try the medical marijuana. Our state laws makes it impossible for patients like myself to get what we need. But, I have to say that to this day I can tell someone just how bad off I am and they still act like nothing is wrong and ask me to do the impossible. They can’t see it, so they don’t believe it! Sadly after all these years. Thank you for putting this up for us.
3 years ago, I was stage 6. My quality of life was gone & my physicians had given up. I had run out of options. Until a friend suggested cannabis CBD oil.
Today, I’ve tapered off all 19 pharmaceuticals.
My pain level is now at a 2-3 down from a 20.
Definitely might be worth a try. Be your own advocate, I had to break up with most of my physicians.
I’m a stage 6. I also think that I have Lupus
I spent 7 hours in the ER today with Costochondritis
I’ve been in bed since I got home
I am stage 6; I’ve lived with this disease for 31 yrs. I’m at the end of my rope. I never got married or had children because I couldn’t bare being a burden. I hate this and I am ready to pack it in. People don’t get it. I’ve lost more than 115lbs in the last 14 months which some would say is a blessing but it still doesn’t make me feel better. I have 4 friends now and I am someone who had hundreds. ?
Well I guess I’m in stage 6. I don’t want to admit it but I’m pretty much useless. I was diagnosed at about 35 and now I’m 60. I was told I would have flare ups and I guess I did for the first 20 years or so. Now I’m in a constant flare. I have to take Gabapentin for the RLS or I don’t sleep. The Dr wants me to take it during the day as well but I don’t want to be a zombie so I don’t. It is now normal to have a headache every day and I take medication for that and it works but then I’m exhausted the rest of the day. I keep trying to find other illnesses that have the same symptoms, hoping that it is verifiable and treatable but so far no luck. I am blessed with a partner that is helpful and does most of the daily chores but he has his own health issues so I hate to be a burden. I had a back injury when I was 30 and am sure that’s what brought it out then a series of surgeries that only compounded things. Good luck to everyone that is dealing with this condition, I’ll be praying for us all.
I am at 4.5-6. I know longer work. These last few weeks have been unbearable. I am exhausted all of the time even though I put the coping strategies in place. I am having more falls and wobbles. My husband is amazing. He works so hard and I feel incredibly guilty if I need to ask for his help. I try to do it all by myself as I am aware of the hypochondriac label that I am getting.
I am new here. Was diagnosedi Aug. 2017, but suffered with Fibro since my early teens. I am now 71. My constant symptoms are extreme fatigue. I am always exhausted,even after getting up in the a.m. I rest most of the day, getting very little housework done. Just making my bed is overwhelming. I couldn’t keep a home together even if I tried. My son does all the cooking/cleaning, which helps me considerably. On average I am not in con-stan pain. My senses are my biggest problem, especially touch and sight. Taking a hot bath used to be heavenly, but now is painful for the first 10 minutes, or so. The bath water just burns into my skin, but I persist. Bright lights just kill me too. It has robbed me of my health since I walk with a cane now. My specialist in Toronto advised me to do Nothing at home, but I am not built like that. He told me I would end up in a wheelchair if I didn’t follow his rules. That is what bothers me the most because I don’t know if he wad just trying to scare me into following his rules. Does anybody have any feedback on this? I certainly would appreciate hearing from you. Thank you. Sylvia.
I am stage 6 now. Was diagnosed in 1997, had a jerk of a Dr. who told me to find another Dr. I think he thought I was a drug addict. So they sent me to specialist sure enough I had fibro, now I also have osteopenia, and scoliosis .I wake up have coffee load dishwasher then climb stairs for a rest. But I’m more worried about this covid 19 Especially since my daughter in law has it. Trying to stay in my room as much as much as possible since I live with them until the 1st.Please pray for everyone of us going thru these trying times.
I think I’m close to a 4. I’ve been having horrible pain in my hips lately. I have a merchandising job that I love and I do great most of the time while I’m walking around but sitting down after work and all evening long while I sew or do whatever and I can barely get into a standing position. My chiropractor gave me some stretches and I think they’re helping – I’m down due to the pain, exhausted cause it hurts to sleep (even w a heated mattress pad). Diagnosed 21 years now and I’m really starting to struggle. I’m unmedicated except for occasional Bayer backnbody and sleep till I naturally wake up. I think I see a rheumatologist appt in my future for my hips. I just dont need one more thing.
I’ve become such a home body – rarely get out w friends (they have young families. I dont) and I’m just tired…. sorry for dumping on you. I usually try to stay positive and not let things get to me. This post hit the nail on the head.
I’m 29 yrs old and just got diagnosed a couple months ago. I’m on level 3-4 I have 4 children all under age of 9. My dr just dismissed me so I no longer get my fibro meds. I asked for a tens unit for my birthday and it’s been wonderful. I suffer from depression also which is how they found it and have had back pain for almost 10 yrs now and all the drs told me that there was nothing wrong with me and dismissed me. Countless drs, nerve conduction studies, couple yrs ago after having my 2nd child I was walking through the house and fell with my daughter because my whole lower body just went numb like it wasnt there. My legs would randomly go numb, walking, driving, sitting. I cant do anything like I used to. I hurt all over all day long. My fingertips are starting to go numb now randomly. Nobody really understands what I’m going through. I see a pain dr but they dont help me either. Miserable!!!!!
6 it took almost a year to find out what was going on just started new meds i hate this pain
I’m level 6 plus I have Ra, Oa, Meniere’s disease and for some unknown reason I pass blood clots to my lungs.
Definitely 6 for me my diagnosis was 2004. Fibromyalgia and Myalgic Encephalitis. Been all those stages never seen it written like that. So accurate. Thank you
Stage 6. Im on disability. My husband doesnt understand anything. He even left me for a month because he thought i was just being lazy not working or cleaning the house.
Well I’m stage 3 my kids are always seeing me getting lazier and lazier. I barley make it to my sons room to change the channel I get there I’m winded this is horrible . I am winded and tired from typing this . My prayers go out to all who deal with this crap .it took me 10 years to get diagnosed and this last year has been horrible everything has just all hit me at a slow pace i also have spinal cord injury and some other degenerative problems in my back. Thank you for listen to my mumble you all understand me thanks again.
Definitely 5, possible 6. Diagnosed in 2008, but struggled since my teens so over 30 years. I have good And bad swings. And I’m definitely favored by weather. My newest in the past few years is IBS Flair’s that whipe out my entire body and last for months. I have learned to do very little, and conserve my energy. Driving whipes me out, so If someone else can, I can get more done. Chores are planned, along with everything else.
I no longer wear makeup, that’s too much work, even though Im a hairdresser of 30 years, I have a shop from home, and only do a couple a week if that. Working outside the home was last on 2011, I was fired for the being sick. I still haven’t been able to collect disability, I tried for years.
Some days I just rest all day.
Soft hugs to you all❤️
Stage six since I was sixteen. Single mom who cant keep a job but nobody can help. Praying everyday for a way to manage.
I believe I’m in Stage 3 with some glitches from Stage 4. I was diagnosed in about 1995 and have never had any med for this beastly problem. These days I take Advil when the pain is way too bad and a atavan when sleep is necessary to take the impossible pan and fog away so that sleep comes. I’m very angry at the way the medical profession as treated me… from being off-handed to being sarcastic to being insulting. I would love to have my dr get this thing… then, maybe she would, at least, show me some respect and/ or show me some kindness… is that too much to ask?
I have had them all. I was diagnosed in 2008. I believe my Mother had it also, but it wasn’t recognized then. She would tell me “I hurt all over” for no reason. She did have Neuropathy of her feet. That was painful. I have that desease also.But Fibro is like a train hit me and backed up again. Disability denied me because I have to work. I’m alone, but I have a great Dr. now. Any advice? Now that I have a good Dr. do you think I would win? I miss work and I don’t want to get fired. I do have FMLA, but that goes without pay. Any advice?
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