I had the sudden explosion of crazy symptoms happen to me as well. For over a year my condition worsened every month. I was so scared I would end up in a wheelchair and so broken that I couldn’t take care of my baby.
I don’t care what anyone says. I agree with you. Fibromyalgia is definitely a progressive disease for the majority of people that have it. My doctor found that I completely stopped making pregnenolone when the bone and joint pain was getting crazy bad. I started talking 300-400mg/day. After 3-4 weeks, I didn’t feel better, but I definitely felt like I was getting worse at a MUCH slower rate. I have been taking it for 9 years. Many doctors and pharmacists don’t seem to even know what pregnenolone is. There hasn’t been a lot of research because drug companies couldn’t patent it for some reason.
All I know is, I wish I had like a whole local book club full of people like us, so we could try treatments together and help each other when they don’t make it any better. I would love to hang out in real life with people that don’t think they know exactly how I feel. Just because I’m not bleeding doesn’t mean it doesn’t hurt.

https://uploads.disquscdn.com/images/173ce4f2ef0b00272aa70924fd7ff968e262e13760aa918d2b7a522e5fac7422.jpg I started with fibromyalgia when I was 11 and was officially diagnosed when I was 16, I’m now 24 and have had my life changed drastically by this condition. Its hard to find out so many things I want to do I now can’t because it would hurt or worse still it would hurt the following day and the day after that and the day after that…I try to remain positive but its hard when I see my able bodied friends do so much stuff I can’t do and the worst thing is, they don’t get my condition, they don’t understand how it affects me so they assume its something and nothing.

Lyrica just made my pain Worse! As well as making my hands and feet swell up (which makes the pain worse!) I suggest being Very cautious with it….

Veronica. Please see my reply above to Joan Stone.

Hi Mary, I’ve suffered for 22 years and it has worsened over the past 6 or 7 yrs… But I decided to stop a LOT of the scripts and take supplements instead… I’ve had some good results with some… but nothing like what you’re describing… I’m very interested to find out what you are supplementing with… PLEASE SHARE… PLEASE…

Jan, I also had breast cancer. I was oadmin of a fibro group and I told the members of the group, you know I can beat breast cancer but you can’t beat fibro. My friends thought I was crazy for saying that. My fibro friends understood. After my treatments I got so much worse, especially the neuropathy, well actually everything. I finished treatments the middle of 2014 and was sick as a dog and so weak and I’ve been that way since.

Hi, I am a 26-year-diagnosed fibromyalgia survivor. I prefer to say survivor, because every day that I manage to finish, is another day survived. I was fortunate, a doctor gave me some good advice early on and I started taking some supplements that I think lengthened the time before full onset began. Five years ago, however, due to work stress, and more insomnia issues, my symptoms got worse, so my doctor increased my medications (cymbalta and gabapentin). What I know now is that the side effects of those two medications magnified what I was experiencing with the extreme fatigue. Even though I slept, the sleep was not restorative sleep, or the pain in my shoulders and hips would wake me often. I lost my job due to a company reorganization, and stress hit big time. I basically spent 6 months in bed. This is not who I am. I started a home based business to provide the flexibility to work when I felt well enough to do so, but getting and keeping momentum was hard. Affording the medicine was even more difficult.

Now, the happier part. I have found products that have allowed me to decrease my medicine dosages, and number of prescriptions, I have lost 31 pounds, and I have energy, focus, and less pain with nearly no rebound days. I know we all look for the magic pill, or lotion, or juice. I can’t say it works for everyone. But the Doctor who has been using this to treat his medical patients claims 70% of his patients improve. The key is controlling inflammation in our bodies by what we eat and do, and then providing additional nutritional supplements to allow our body the nutritional elements that it needs to heal naturally. I would not have believed it until it started working for me out of the blue. Every day I can do more, and experience less pain. It is a learning process, to test new limits, and I admit I am using my body as my own lab rat to see what works and what doesn’t. I was tired of giving up pieces of my life to this condition. I am still alive, and I wanted to be able to act like it! Not sitting at home mindlessly staring at the television or my phone.
There is hope, there are ways to lessen the suffering with fewer pharmaceuticals that cause more damaging side effects. If you would like more information, let me know. I am on a mission to help other sufferers start getting their useful lives back, too!

I agree with you, Lorre. I too started with FM when I was 39-40, and am now 59, and it IS harder to live with and deal with FM every day. I am trying to get back to stretching and slow walking or using my stationary bike, but find it hard to make it a regular thing. Just doing the daily basics of life are hard enough with FM! Hang in there!

Fuck. I was diagnosed today. I’m only 27. Is this what is in store for me?

I’m glad to hear you’re doing so much better

I have to disagree slightly with the fact above that says Fibromyalgia is not progressive or life threatening. This was the pep talk my doctor gave me when I was diagnosed 17 years ago. I was 39 years old then, and I am now turning 56 in a couple of days. I am dramatically more disabled than I was at 39. If the disease itself isn’t progressive, the symptoms of the disease surely cause worsening over time. Being in pain without energy to manage daily functions has definite consequenses over time. My muscles have de-conditioned from my inability to stay as active as I was before. My fatigue has forced me to stop doing many of the things I once enjoyed. The inability to stay active causes isolation which only deepens depression and mental fog. My flares no longer have marked gaps between them. I am mentally and physically worn down from this disease, and I can understand why Dr. Kavorkians first victim had Fibromyalgia (though of course I do not support what he did!) It is hard to hold on to hope when you are in pain 24 hors a day, and your friends and family no longer call you to do things because they know you will probably say no. I have exhausted myself with Doctors, new treatments, and pie in the sky hopes for healing. Aging seems much harder and more accelerated with Fibromyalgia. So NO, I do not agree this disease does not progressively get worse, and though it isn’t fatal, depression is….and it is very hard to avoid depression facing life each day through the pain and fatigue of Fibromyalgia.

I’m not sure if to post on this you are required to have been diagnosed with fibromyalgia, but I feel I have to tell my story to someone or I will go nuts. Ever since I passed out at my first job a little over two years ago, my life has never been the same. A bunch of tests were done, but they could never figure out why I randomly passed out. I didn’t work for a year because i have a severe concussion, and luckily I went to an alternative school and graduated right on time. When I got another job after that, I was fired because my till was short over and over. And I knew I was good with money and careful about it. The most previous job I’ve had, I almost passed out a few times but I know how to see it coming so I stopped it and had to stop working. The point is, it took me forever to convince my parents that I was getting very sick. Just working for a few hours doing what everyone else did made me feel sick; I was in pain, I lost my vision, my muscles weakened, and the worst part was the fatigue. Of course there are a million symptoms now, but that’s just how it started. A short list of things that I could be imagining or theyre just something else that can be easily fixed. I don’t want to go on forever, but to let anyone know that is young and isnt feeling like they used to, dont ignore it. I was 17 when all this crazy stuff started happening, and I’m 19 now. You’re never too young. So keep fighting for yourself, because no one else is going to understand you unless it’s, of course, someone on this site. Take care of yourself.

My girlfriend has Fm, she currently takes many pills for the pain, none work. She now has an appt with her Dr to discuss methadone, Does anyone know if this will work? What are the effects, will she get addicted, will she be high all the time?

I have just recently been diagnosed with fm. This recent “flare up” came on quite suddenly and very aggressively. Looking back I suspect Ive had for years now just noone knew what to say it was. It has always been a running joke “you know its just Tammy”. I am in so much pain right now I dont know what to do. I am currently on 30 mg of cymbalta and 200 mg of lyrica and still feel like a bulldozer hit me repeatedly. I have gone from working 10 hr days to 4 hrs. I think i could handle the exhaustion if i could just have some way of minimizing the pain. I struggle everyday to understand what is happening to me and then trying to get everyone else to understand. I read the spoon theory last night and it gave me such encouragement.

Hi everyone. It is a struggle to get through every day, especially in school. Life definately is not easy with this but we do what we can when we can. I get called lazy all the time. I’ve had this since i was 14, dx at 16 and now I’m 24. We just have to do our best and never give up. All of you give me hope and inspiration!

two back injuries chronic pain ostoarthritis compartment syndrome and a LOVERLY pilo nidal sinus spondylosis and spurs sciatica YEEEHAA owch but have hypermobile joints . good days and bad–but still work so all is well 🙂 and bipolar type 2 and depression and an addict…………………oh well life lemons lemonade etc 🙂 blessings to you all >.<

I was diagnosed with Fibro/CFS when I was 17. I’m now 33. I’m getting better at managing it. I’m also bipolar. When I’m manic, I don’t feel the pain so much, but I tend to do too much and don’t sleep, so I feel it hard when I cycle down. I’m a very ambitious person and being chronicially ill has really caused so much frustration, as I cannot do the things I want to do. Some days I cannot do much at all. I am so thankful for the spoon theory, my husband really gets the analogy!

I have had fibromyalgia for years and I agree with most everything everyone else has said here except for one thing you said Christine. Not sure if it was your personal opinion or something you copied from somewhere else. But the statement (fibromyalgia, it is not progressive or life threatening) is not true. Granted that statement is what most doctors will tell you but do they have fibromyalgia? No, most don’t. But I am here to tell you it does progress. I have been told that it reaches a point and doesn’t get worse. Well I am still waiting for that point where it stops getting worse. Every time I think this has to be the worst I have ever felt (BOOM) it rears it’s ugly fibro head and shows me how wrong I am. I have had this for years and it has not stop progressing yet.
As for the part about it is not life threatening,,,well maybe not directly. But think about this, most people including myself don’t sleep because of fibro. It keeps you from getting that deep sleep your body needs to heal. And what happens to the body when it is deprived of sleep? It affects the entire mind and body in a very negative way. There have been many sleep studies on young healthy people where they kept them awake, would not let them sleep more then 4 hours at a time. And they found it caused even in these healthy people lack of brain function, raised blood pressure and lots of other things as well. And if your brain and other organs are not getting what they need from sleep then what will happen to them when they become overworked and stressed from lack of sleep? Everything can be affected by fibromyalgia in the long run. So those who say it is not life threatening I say to them, *&^%@# because it is. It is like a big snowball that just keeps rolling out of control. Maybe some people are able to keep various medications in their system and on hand. But not all of us have that luxury. Many of us are very sensitive to medications and unable to have our choice if any at all. No 2 cases of fibro are alike and no one person can compare their illness to someone else’s.

I’ve had pain all of my life – when I was growing up, our old family doctor called it “growing pains”. At first they thought it was RA, since that runs in the family. When I was a pre-teen, I was on a regimen of 8 Bufferin a day. No wonder I have such severe stomach problems now.
I’m 47 and was only diagnosed with Fibromyalgia about 10 years ago. It physically hurt growing up and not being able to do things my other friends did and being called lazy.
I’m functioning at a full-time insurance analyst’s job, but there are days when I can barely make it through the 8-hour day and just plain crash when I get home. I live with someone that suffers from post-polio syndrome, and some days neither of us is capable of even putting the dishes in the dishwasher.
I take Lyrica for FM, but I’m also dealing with diabetic nerve pain as well.
Some days it’s a complete struggle, but I’m trying to enjoy life, the nice weather (now that winter’s over), and keeping a positive outlook – even though everything I’ve said above doesn’t sound that way!
It’s a wondrous thing to know that I’m part of a community like this – the support and understanding is precious and priceless.

I too had FMS/CFIDS from about 8-10 yrs. old & now almost 65. After reading all the posts, I have to say I admire each & every one of you! I had a terrible time in school & disliked learning because it was always so difficult. Same now, so many yrs. later. The only comfort I find is knowing that others DO understand what I deal with & that it is very real! We’re the only ones who understand each other. I feel like I have been cheated from a normal childhood, into adulthood, into my senior yrs., but after reading these posts, it makes me grateful to know this condition is finally recognized as a young person’s illness now.

Wishing all of you well & know that I admire all of you. You WILL succeed in school, even if it takes longer. Be proud of that fact that you will be getting degrees despite this. I ended up on disability in my 40’s, after yrs. of working in the med. field. It makes me smile when I realize that I did make it through those yrs. of working & trying to live a normal life. In those days “this” didn’t even have a name & I felt SO alone. You’re all very special, & admired so very much. Gentle hugs to all of you

Oh my gosh! I’m entering into my fifth year of school, and hopefully I’ll be able to graduate next year. I always feel weird since I’m not graduating with my class. It’s hard to explain that my fibromyalgia makes it impossible for me to take more than 12 credit hours per semester, and even that was hard at times! I’m glad I’m not the only one who has had to take longer to get through school because of this thing. No, I’m not saying I’m glad you have FM…just glad that I’m not alone and that someone else understands! I am so thankful for simple things like my shower chair and wheelchair that makes eternal walks across this small campus possible. Now I don’t have to worry so much about *how* I’m going to get somewhere and the fact that walking would use a precious spoon, but that brings with it another set of problems since I am also totally blind. Anyway…enough ramblings…it did help to read others’ comments that I could resonate with…thank you for helping me to see that I’m really not alone in this fibro/school battle. And I’m determined to win it!

I, too, have had fibromyalgia and RA for 11 years, but I got the good news when I was 52. I know what you are going through and it is a struggle. My doctor put me on a low dose of an anti-depressant, which has helped a lot with the fibromyalgia pain, but you do have to change your whole lifestyle. It was hard for me to accept at first too, because I had never been sick and always very active. Now I really have to be careful how much I do because if I over-do, it brings on a flare or I pay for days after.

I thank God that I am blessed with a wonderful husband who understands and does everything for me so that I have the energy to go out and enjoy myself now and then.

It is hard when people don’t understand that you are not well…because “YOU DON’T LOOK SICK!” Hopefully, more and more people will understand. I congratulate all of you who are dealing with this condition and trying to make the best life you can, while dealing with the pain.

I started with fibromyalgia when I was 11 and was officially diagnosed when I was 16, I’m now 24 and have had my life changed drastically by this condition. Its hard to find out so many things I want to do I now can’t because it would hurt or worse still it would hurt the following day and the day after that and the day after that…I try to remain positive but its hard when I see my able bodied friends do so much stuff I can’t do and the worst thing is, they don’t get my condition, they don’t understand how it affects me so they assume its something and nothing.

Today for Fibromyalgia awareness day I went shopping with my boyfriend and my best friend who has Lupus, we acted like normal healthy girls and for a few hours we were because we understand what its like to grow up “different” I think its the most fun I’ve had in a long time. 😀