Stage 1
At the very start of fibromyalgia, you are going to feel mild pain and fatigue. You are going to feel tired all the time. Because of this tiredness, you might not be able to do your daily job perfectly. You are holding to your job but you are pretty sure that something is not right with your body….so you start researching.
Stage 2
Pain and Fatigue increase day by day and now you are very miserable. Sometimes you take anti-inflammatory medicine to get rid of the pain but the pain does not go away. You are convinced now that it’s not an ordinary pain and there is something is going on with your body. You are exhausted almost all the time from fatigue but you are still holding on to your normal routine, can still meet with friends, can go to events and have some good time now and then.
Stage 3
Pain is totally unbearable now and you are wondering whether it is some kind of infection or allergy, Whether I would b able to function like a normal person again. You are now thinking about leaving your job because you don’t have the energy to keep up with the job. All you are doing now after coming back from work is rest, rest and Rest and you are expecting that if I take a good long nap then I might have the energy to go back to work tomorrow. This stage is so dangerous because now you are going to cut people out of your life because you can’t properly give them time. This stage can last for years
Stage 4
You are in awfull lot of pain all the time. Good days are hard to come by. You are calling in sick to work almost every other day because you don’t have the energy to go to work. You are in bed for almost 16 hours a day. Even though if you have a good day and you wanted to take advantage of it. Fibro flare comes in your way and you might not be able to get from bed for the next couple of days because of flare. This time your friends won’t invite you to your events or gathering because they already know your excuses and they think you are whining about it. My Family thinks that I am making things up and don’t wanna be with them. You are going to feel lonely, worried and isolated from others, more than ever because no one can really understand your pain. This stage can last for years and its the worsts.
Stage 5
Up till this stage you might already have let go of your job or at least thinking about it. Now you are thinking about how to get permanent disability because you can’t put up with this unrelenting pain. You are thinking about how long does it take to get disability, also you are worried about getting denied from disability. Maybe Now you have hired a maid because you can barely move. Sometimes you cry in a corner like what is Happening to me. You are entrapped in your own body and there is nothing you can do about it. If you have a good life partner who can understand what is going with you, can really cheer you up.
Stage 6
You are now alone in this. You have started looking about fibromyalgia on social media. You find many other people who are going the same as you. Now taking shower is feel like a BIG job and once you take a shower, you are done for the rest of the day. Strong lights hurt you, Even the slightest touch to your body can cause really agonizing pain. You are on hard medication. Doctors can’t find a proper cure to your problem, they just suggest you some pain relief medicine. You don’t really care about your clothing now. In fact, you prefer to be in your PJ’s because you feel comfortable in them. Those good days when you were athletic and have a good memory are like a dream to you.
You still like some things in life like watching TV. You are trying to be in sync with current news to find out whether there is a new cure for fibromyalgia. Your friends don’t bother talking to you about yourself as they have other things to do. You need to rest a lot which causes many things to pile up like bills, house cleaning, and dishes. You might have even gained a lot of weight with all those medicines and now you are also thinking about losing some weight but you can’t because you just don’t have the energy to do a workout. You might try a new doctor in search of finding relief from all this pain and fatigue but all they gave you some sleep medicines. Life is like a living Hell NOW.
Stage 7
A Question which I ask myself, Why me?. I was having a good life like a normal person and then BAM !, FIbromyalgia hits me like a Bus and now I am disabled for the rest of my life. We are still looking for a possible cure but it doesn’t seem like we are ever gonna have one.
You relay the general idea of how Fibromyalgia begins and progresses but our stories end when you speak of a loving partner who understands us. Because the cause and cure are unknown all our experiences are a bit different as well. I have my “tool” box full of different things I use to ease my pain in addition to taking medications on a regular basis. The government’s restrictions on pain medicine have left me in constant pain and living with maximum restrictions. I was denied SSD for 12 years and lost everything I owned. My family turned their backs on me and I haven’t heard from my friends in years. I live ON SSD and Medicaid NOT SSDI. My case was dragged out until my 33.6 years of work (my carreer) was not able to count as credit. I live with a friend who charges me minimal rent and we both take care of each other. My fibromyalgia consumes me at this point and my only true releif is sleep. Thank you for continuing the fight!
Fibro = Chronic inflammation and that responds well to Cur-cumin or Curamed by Terry Naturals or theracumin by Solaray for one. Second, get yeast free as it seems to me now years later, as I felt the best when I did the Yeast Connection books and cookbook. Also, look into leaky gut syndrome as my IBS has pretty much gone away by taking Triphala an ancient India remedy along with Colostrum and high pro and prebiotics, and Systemic Enzymes. (These enzymes break down the casings of the bad thingies so your body can get rid of them, drink loads of water!). Also, like Lymes spirochetes could come into play and they create a histamine reaction in the body as well so Homeopathic Histamine helps me loads. Also, Sovereign Silver helps with killing off the parasites and bacterial issues in the gut and on the outside of the skin as well. The gut is the biggest part of our bodies that need all the help we can give it. Go GMO as well with your foods as the Gyphosphate is killing our guts and colons just like it does to the bugs, but slower.
I have lived with Fibro all my life apparently since I had trauma early on in life and never realized the connections. Took me 20 years to get disabled after a neck surgery that left me in more pain and issues with my low back and due to Sensory Processing Disorder pharmaceuticals are not even allowed in my life anymore due to severe issues with the side effects and just the basically small ones at that. Being hyper sensitive gives me the frog in the environment syndrome for sure.
I have been blessed to have found a guy who has a health food store, now we are married, and he has given me back my life! I now have a small garden outside in the yard I get to attend to yearly now. What a difference this all made to my life…let me know if it helps you out too.
I too got nailed with a lower SSD bc it took 3 1/2 yrs to finally get disability! (That was in 2001) Soon after my husband walked out on me (after 20 yrs) & let our home go into foreclosure. He’d found a healthy, rich Christian woman & off he went! It really hurt to know I’d no longer live comfortably & had to down size my whole world! I wasn’t well off but all bills were paid, I had a decent car, a house & plenty of food to share with company. I was an A-type personality so always on the go, now I try to find “her” on the good days. I’ve finally got to stop the pain meds with CBD or THC candies instead to let me sleep & help with the pain. I found that stretches do wonders… not ALL the time but often enough to keep me going! Wishing you better days & the mental strength to keep going.
I’ve had Fibromyalgia for so long and the progression is horrible. I have a very high pain tolerance, but when a flare happens now, everyone needs to let me be. My heating pad is my bestie! But, I find that the fibro fog is the worst of it!! Trying to focus, trying to function normally with it has been my demon. The fatigue no one understands at all.
My house is a disaster most of the time and so unorganized that is bugs me so bad. I haven’t been on any type of fibro meds in 18 yrs. Due to all the side effects.
I have zero support from my husband or my adult children. I feel like a train wreck no one wants to be near.
I stopped taking the pain killers because they didn’t help. I retired young because I couldn’t take the pain any longer. I got very depressed and felt exhausted all the time. My doctor told me to pace myself with any and all activities. I have good days and bad days. There are days I feel like vomiting because of the pain. The wonderful thing about all this is that I have an amazing husband. My thoughts and prayers to anyone who has this miserable thing called fibromyalgia!!
I take 100 mg. Of anti depressents , they are also a pain killer. They work really well, but when I have a bad flare-up, I can feel pain, but nothing like what I would feel if I were not on them. I pray they find the cause of this. Seems like we all have this in millions, I’m thinking maybe it’s the food we eat, don’t know, but just a thought.
I have it to and know my pain is from head to toes. I could sit here and tell you all the things I have to deal with but I would be here all day. I am also fighting disability since 2015 and I have gotten 100% worse. I am going for an MRI for my shoulders going for brain scan for my memory and not being stable on my feet. And then I am getting a scan of my carotid artery. I need answer so I can show Disability I am disabled.
You might want to see a therapist too and try some antidepressants if you haven’t already. The reason I suggest this is because my aunt has fibromyalgia and SSD denied her as well for her fibromyalgia but she got disability for depression due to her pain. It’s kinda like losing the battle but winning the war. You just need the SSD no matter how you get there. Good luck to you!
If you haven’t got a SS Attorney. They get paid when you do. They get a percentage and this is regulated by law. Mine was great. I was told everyone gets denied the first time. Keep fighting. But please get an attorney.
How did the test come out
My Fibromyalgia symptoms started 12 years ago so much pain in my wrist I was wearing arm braces because it hurt so bad to bend my hands. Electro test showed I had nerve damage. & Corporal tunnel, I said no to surgery. It wasn’t carporal tunnel.Than I had symptoms of heart attacks spent thousands on every test possible my heart is stronger than most. They finally called it Costocondrident . I couldn’t sleep because my hair felt like needles poking my skull when I put my head on the pillow. I have sciatica, my feet tingle and burn
I could go on an on. I just thank God for a wonderful husband who has given me lots of support through the pain an depressed days . God bless each one that has this awful infliction.
25 years of this stuff. I say I must be suffering for the world. I tried over and over to get SSD. Each time they turned me down. I had a 16 year old girl I hired to do some cleaning for me. She quit I guess, she never shows up. They used to say it takes me 10 times longer to do anything, 10 times or longer. The friends have all gone away, especially now when I need them. No matter how much you read, it never goes away…. ever.
Because you have fibro, you are bound to be depressed. You go to bed in pain, you get up in pain.
I have had fibromyalgia for 30 years. I m in stage 7, am no longer working, I have grieved over my lost life, that life where I worked 3 jobs and rode my bike everywhere. If I was bored I’d hop on my bike. Now I have changed my activities ie: instead of a bike ride I go for a drive. I refuse to let my illness win! I may not be able to work in child care, but I can foster 1 baby at a time. I’ve come to terms with it, but I still keep sort of active and look forward to simple things. I have stopped beating myself up because I can’t do something. Now I find joy in things I CAN DO. So don’t get hung up on all those I CAN’T and focus on what YOU CAN DOs. Just keep looking for the CAN DO. Your life will be happier.
That type of comment is harmful and sounds like boasting. I have been dealing with this and a mega list of other symptoms and diseases for over 35 years. You are able to make the choice to care for a child so certainly haven’t reached HELL yet. Choose your words carefully, with utmost empathy, one day you might understand why. Quality of life disappears and though you may believe what you said is helpful to others and it may be to some at a certain point. When you can barely walk, your pain level is intolerable 24/7 375, it hurts to put clothes on and even a wrinkle in the sheets hurts so much it wakes you up after finally getting to sleep! Resulting in rocking and crying myself back to sleep. This life is not easy and many of us are alone. Living 1 hour at a time.
Theresa Deady. Their is nothing wrong with trying to look at the situation in a positive way. Empathy goes both ways Kim. There is nothing wrong with having a safe place to open up and say how fibromyalgia makes you feel. We all hate it! Sometimes we need to let our inner thoughts out no matter how awful they might sound to a well person. But some people want a reminder that maybe they can find some type of happiness in life. People seem to cringe when I tell them I would absolutely without a doubt in my mind kill myself if I didn’t at least get some of my pain diminished with the Lyrica and tramadol. But I also keep working for now and I don’t know if it will last long but I will just be glad for now I can. Please be just as emphatic in your words Kim. We all have battled this stupid ailment. We have all been labeled by so many physicians as hypochondriac. Family feel as if we are just being dramatic or attention seeking. It is hard but this is the life we have to deal with take or absolutely leave it. But I don’t know about you or not but I am not ready to leave it. I will still fight daily for some resemblance of happiness. It is either that or the later. For another day I will keep pushing forward.
I’m in the UK but i wasn’t diagnosed for over 27 years! I spent all my life that I can remember in pain, I already was taking lots of medication by diagnosis at 38 years old, started pain killers, anti-inflammatory n anti-depressents all from 11 years old, on and off as each part of my body took it in turn to horrendously flare up, then be left with restricted movement, lower pain but that feeling of on the edge, where you know anything could set it off again replacing me with a stiff, dodgary 80 year old body). I’d had severe migraines from aged 5, where I fainted or lost my vision as well as the terrible headaches, eye pain (photophobia) and painful hair and from 11 always complained of blurry eyes. By 41 I couldn’t even work part time or do barely anything at home, I couldn’t drive, I was a liability cooking n even going out in my wheelchair which was not very often, I needed someone with me as I could get so tired of talk like I was drunk, I couldn’t stay awake on the bus n my brain, well, I’d wait on wrong side of road or get confused and end up just sitting sobbing knowing I was no use to anyone! Of course then I couldn’t go out barely at all, I struggled to get to the toilet! BUT after 35 years of suffering and continually getting worse, after I’d grieved for my whole life and love life (as hubby left) I STARTED TO IMPROVE!!!!! yes, it was slow, but I straighted my back, could pick my feet up when walking, and now 4 years later I can have fantastic days! I mean fantastic! I can wear heels for a time! And a bra!! I can walk from my car to a shop and then around that shop! Not saying I don’t hurt but it’s less or I can take the 2-3 days of sleep after something huge. It is amazing to walk my dog around the block! These things I hadn’t done for 10-18 years! I take less Meds too. I have something called BOWEN, they move your muscular skeleton into place very gently with your breathing. They leave you rest few minutes then move different bit etc. I’ve had 1- 1.5 hours every 4-5 weeks over the last 4.5 years. Apparently, when your muscular skeleton is corrected then your body underneath that corrects itself, layer by layer. My lady is so good, she researches a lot and also uses pressure points to help alleviate pains. Have to say I also think that finally being at the tail end of my menstruations has a lot to do with the lower pains in my back and of course I’m not loosing all my energy or iron that way anymore.
I pray that you can relate to what I’ve written and can stay positive and know that even basically when you can only walk a few steps there is hope for YOU! I had kept partly strong on the surface but underneath I was looking forward to going in a care home after my kids left home cos I knew I just couldn’t cope with life anymore. So please try to find what helps you, try BOWEN. THERE IS HOPE FOR YOU ALL!
God bless. Lisa xx
I can’t srand the constant pain and being tired all of the time. I was wondering if anyone has tried CBD oil? I was on pain meds that I liked, they took me off(bad side effects) I am not impressed with new meds. Just trying to see if anyone has found anything.
I was in pain for over two years, my doctor finally did labs to rule out autoimmune diseases, those labs were negative. Then he asked me when my pain started and I told him that it started after my back surgery, then got worse after my hysterectomy a year and a half later. He said he thought it was fibromyalgia, and the surgeries triggered the onset. He then prescribed low-dose Naltrexone, within two days of taking that I was 90% back to normal; I’m not kidding. From being in pain all the time, and really paying for it with any activity, I was almost completely back to normal. My doctor says it’s in the literature that low-dose Naltrexone works for fibromyalgia so I don’t understand why more doctors don’t try it with their patients. Fibromyalgia is brutal and no one should suffer with it if the naltrexone works.
I lay here in my bed hurting so bad! Even my thumbs hurt my pinkie finger. My right foot is messed up and they keep saying it is fibro in my joint. It is 2xs as big as my left foot joint(the one under the big toe) Some days I drag it .
I have fibro in all 18 points. I was diagnosis in 2008. I was a Co-Manager at a larger Wal-Mart. 15 members of management under me and over 500 associates. I started having pain in my chest to the point they rushed me to the ER. After a year of test, trying everything this is what they said. Fibro. I live by myself in a strange town trying to work in management again. My husband left me and before he left he started hitting me, calling me names, would not help me with Disability. I tried for over 6 years. No No No!!!! That’s all they did was tell me No! I see a Dr. Every month now. I take cymbalt and Adderal and a host of many other meds. Before fibro, I have had 15 operations. I was told I would not live to be 50 years old. I am please to say I am 54. I have raised 3 beautiful young men who have given me 3 grandbabies. I hurt thru out the night and lack of sleep because I have to get up and walk around I feel like the Tin Man who needs oil all the time just to move. I can’t even tell you about the Migraines, oh my goodness. So bad I take shots for them. I can’t give up We can’t give up. Listen, I am alone you are alone, But God said he would never leave us or forsake us. The devil is a liar We have something to say to help someone in this life. Someone is going to get a blessing because we tell of our struggles and victories. Stay Strong! Remember, it is not what happens to us, it’s how we react!! Pray, dream, Live.
I think these steps are true when you’re in the thick of it. However I do believe that you haven’t had the experience of acceptance and happiness. Once I started doing a lot of therapy and starting physically moving more the pains started to subside. Yes I completely understand that moving goes against everything we’re feeling in those moments since we’re already in so much pain! But even if I need my cane I still try to go for a walk at least every other day. I have a goal for yoga and Pilates of once a week and if I’m feeling up to it and can do more then its great! I also have gotten very strict with myself when it comes to how clean my surroundings are. The better I upkeep my home the easier daily and general cleaning becomes. Plus doing a little every day gets me moving which is a great goal! Not all days are good of course and thankfully I get to work from home so it’s easier to deal with flare ups and having my heating pad on hand. I’m just hoping that someone reading this comment will see that even with fibro you CAN have a good life. I’ve had it for over 20 years and I’ve had a bad decade and still looked to the light at the end of the tunnel. Acceptance and some positivity thrown in has made my symptoms lessen! Best of luck to everyone dealing with severe fibro and it’s a journey! You just need to keep fighting!
I recently found cryotherapy and it really helps me. My tolerance to cold is much better and it reduced the pain. I am also working on the chronic pain areas with electro stimulation.
I have experienced every symptom there is of fibromyalgia. The worst part (besides the pain) is the confusion and forgetfulness. Having someone tell you something while standing there with a blank glare waiting for your mind to put their words together to something that makes sense! I have been a waitress for 10+ years and had to give that up because we never got a break. We would work 6 hours with no food break and no sit down breaks. I would have to lift my legs into the car. Most evenings I would just lay in bed with a blank wrapped around my legs for heat and pressure. I really enjoyed meeting and talking to the customers but one day I just couldn’t do it anymore. I came home went to the bathroom and my legs were so weak I couldn’t get up from the toilet my arms were to weak to push me up and my legs couldn’t help. That was my breakdown moment through tears and screams I cried out to God what do I do and He said you don’t deserve this pain and they don’t treat you right at your job. You’re killing your self!! So I knew if I didn’t quit that day I would still be working! So I called her and said I quit, I can’t do it anymore. Of course she wasn’t happy about it but she wasn’t the one hurting like even though she would say “yeah my body hurts too” but I don’t believe that for a minute.
I have my rheumatologist appointment in March so I guess they will figure it out. If it’s fibromyalgia or Lupus. Take each day as they are given to us. God still has a plan?