I’m 26. I have been in pain for 3 years. I was diagnosed with FM 1 year ago.It started during my post graduation and I’m having immense functional difficulty since then.
Even carrying out basic needs is extremely difficult. I somehow managed to complete my studies. I find it too difficult to walk even to the next room of my home. I tried working from home for a few months but I’m not able to do it now because of pain. I depend on my parents for everything financial. I really want to do a job.
I have been staying at home for nearly 2 years now and rarely go out except for visiting the doctor. I feel like I’ll have to give up my dreams and ambitions. It scares me when I think of how much more difficult life is getting day by day. My doctors and parents really try to help me but nothing seems effective.
I am relieved to find people who go through similar situations and support each other here. Will you be so kind as to share how you manage to get through all these.
I found the same thing, got thru college, though very frustrating working, studying so hard and not achieving my dreams, grade-wise or career-wise. For a while I beat myself up, but now have become resigned to just being who I am, doing what I can and taking every day as it comes. My Mum helps by bringing me food and I do have a friend who helps out financially, but it pains me to take his money.
Oh… I wish we could find a solution that makes life a little less difficult. Yoga and vitamin D supplements had helped me for a short while… for a few weeks since I started it.
I tried rTMS treatment but didn’t find it effective. I am on Lyrica, Cymbalta and tramadol now… and continue taking vitamin D supplements… I consulted a Psychologist and she taught me mindfulness meditation which I practice now.
If you are not taking it now, give vitamin D a try.
Thank you for your response.
I’m on 60mg of cymbalta too, first month of that dosage. The 30mg first month made me have no appetite what so ever, lost some weight. But it may be helping. I was able to go to our farm and do some chicken processing that needed doing. But I still am so tired, not sleeping well, so fatigued, ache all over, if I do anything, which I have to of course, I pay by being stuck in bed…
Thanks for sharing. I was recently told by a pain specialist (here in Australia) that a lot of the commonly used medications, especially any opioid medications, can actually worsen symptoms, so it might be worth talking to your doctor again about how you manage pain. Natural anti-inflammatories might also work (there’s some great threads on this site about them, which is how I’ve discovered them- they’ve been better for me than anything else!)
Focus on what you can do- you’ll find that your succeeding in more than you think! There may be jobs you can do that fit with this, and allow you to feel as successful as you deserve to feel- after all, just getting through the day when you’re in so much pain is a major achievement- don’t forget that (I have a wonderful physio who always reminds me how far I’ve come and it really helps when I’m feeling limited).
Best of luck, I hope you find something that works for you!
Hi Jess111,
Your response is very reassuring. Though I don’t know you, I’m glad that you could appreciate your efforts and be hopeful despite pain. I usually hear such advices from doctors and therapists. But it’s different when hearing from a person who is having same kind of struggles.
strong textHi Love Your Picture. I am a “Kittie puurson.!”,
First of all, I am new to this group. It pains me to read your story and
just looking over the others. I, myself live in pain. I have had"Fibro’ for over 24+
years. I have tried so many Medications…I filled up 3, 33 gallon bags of 'empty bottles.'
I live in Ca. I fell at work, that 'triggered it." I was the first person who was awarded
Social Security." I know you are young, but I wanted to put This Out There For All of
you, who are NOT ABLE TO WORK and NEED Financial Help. Call your local offices,
You Really DO NOT Need A Lawyer. Mine thought “Fibro, was all in my head!.” So I do Hope and PRAY my message HELPS , One and All who Read this.
Thank You and “GOD BLESSES.”
Hey Radhika,
Thanks for sharing your story.
I’ve never been properly diagnosed with Fibromyalgia, my rheumatologist said I have generalised myaligia and discharged me. So I have no help at all. When I’m at my worst I take co-codamol and have breaks but generally speaking I can function in every day activities.
I’ve changed my diet, I’m not vegan, and i started doing Pilates which I think might have helped. I stopped doing Pilates for about 4 weeks now and my symptoms are worsening…I am also a Christian so I think my faith has also helped me stay positive and keep going. I pray everyday, and when I’m at my worst I take a little time out to meditate and think of God. I honestly believe God is helping me get thru everything.
I saw an occupational health dr the other day who said my anxiety and low mood scores were better than she expected… I have many episodes of depression but I always get back up again because I know I have to just get on.
I know I’m quite fortunate that my symptoms could be a lot worse, and my method still may not help you, but I really hope that you find some peace and pain relief.
Dominee,
I was diagnosed about a year ago, but believe I have had it for about 5 years. They started me on Gabepentin, 200mg, 3 times a day and Meloxicam. Last October, I had total knee replacement and developed a hematoma. They removed me from blood thinner and I developed blood clots in my lungs, which I did not know, I just attributed the difficulty breathing to being overweight, cold weather, allergies,etc. Finally after 6 months, I went to ER, and it was discovered that I had MANY pulmonary embolism in my lower lungs that had been there a very long time. I had to start taking Xarelto and stop taking Meloxicam. By the second month of no Meloxicam, I was in tears and could not figure out why I hurt so bad. I realized the Meloxicam was helping but could not take it. So I went to a Naturopathic Pharmacy and she prescribed Fibralgia from Nature’s Sunshine and Arnica Montana(Homeopathic), and to wean myself off of Gabepentin. It really has helped me. I still hurt, but not as bad. It is tolerable. I also just purchased an Infrared Sauna. The benefits of that for fibromyalgia are incredible!. I had one before and had to sell it. I believe THAT is what kept my fibromyalgia at bay for those years before diagnonis.
Is there anyone who doesn’t take any medicines? If yes, how did you find the experience? I’m tired of visiting doctors, going hospitals, getting tried on experimental treatments and taking medicines for years and finding none helps. I sort of grew hating all these. I want to stop them.
Also is there anyone who has undergone ELECTROCONVULSIVE THERAPY (ECT)?
I was diagnosed at 16, and I’m currently 18 years old. Fibro is causing me to most likely have to quit my job already, and I am a freshman in college. I work a Chick-Fil-A for crying out loud! But the persistent standing and moving around for a 5 minimum 5 hour shift everyday makes it hard to function, and I can hardly do what I am supposed to do. Some of my supervisors understand that I “don’t feel well”, but my boss thinks I’m pathetic and lazy because she has no clue about the Fibro. Being treated like your lazy when you physically can’t get out of bed is just one of the many things that makes my flares worse. I am currently in a Flare that has lasted 2 weeks so far and all its doing is getting worse. I cant hardly take it anymore. Pain meds don’t even touch the pain, my doctor just put me on a heavy pain killer, so far its doing nothing, and she told me all I need to do is yoga…that makes me so angry. You don’t think I’ve tried everything?? I’m 18 for crying out loud! I shouldn’t have my life being wasted away at this young of an age, but nothing helps.
I feel for you. There is no way that I could do a job that requires me to stand for more than 5 minutes. I just can’t do it. My back will spasm and my feet hurt terribly. Now, if I am moving to music, I can do it because I am distracted. There is nothing distracting about waiting on people and serving them.
You are right, no one who doesn’t experience fibro can understand how we feel when we wake up in the morning and are more tired than when we went to bed, or how it feels to do too much in a day.
I would not be working right now if I had not decided to go to college in my 30s (I’m 58 now) and get a degree. I work at a desk and love it. I don’t have to worry about lifting, bending, or anything else like that. But I do have a arthritis in my neck now, so I have asked our information technology department to raise my computer screens because they are too low and hurting my neck.
I cannot imagine getting this at 16!! how horrible. I had three children in my early 20s. I worked as a hairdresser and stood on my feet for 8-10 hours a day and thought nothing of it. But to be young like you and experiencing the trauma of living in pain would be a trial.
We’re here for you and know that we understand!
I know ryliecowan. For me, the most difficult part has always been dealing with people. Most people take me for being lazy, some say at my face a lack of motivation is the reason I am not able to do the things I have to do or to have a career I dreamed of.
I had a rheumatologist who asked me whether I really want to get well. She asked it like I enjoy being sick. One year ago my rheumatologist told my parents that there might be some psychological issue behind it. He said it only because his medicines weren’t working for me. Since then, they won’t believe a thing I tell them. My parents have been taking me to various psychologists and psychiatrists since then. Every psychologists and psychiatrist I saw think stress is the underlying issue of FM. They will say that you are in pain because you are constantly thinking and anticipating it. I feel sort of helpless at this. If I had to go somewhere and couldn’t do it because of a flare, they say I didn’t want to go, that’s why the pain flared up. Or if I did something and it made me very painful, they say I didn’t like doing it that’s why I developed pain. Nobody listens to me if I said otherwise. I didn’t have any mental health issues but I was admitted at the largest mental health hospital in my country for three months because of FM. And it made my condition much worse than how I was before I go there. I developed depression.
I feel I had enough. I feel like I don’t want to visit any more doctors.
In India, everyone treats you like a kid if you are an unmarried woman living with your parents though you are 26. Doctors will not take you seriously, they will only listen to your parents. And for parents, it is really really difficult to see their child being always sick, struggling to walk even to the bathroom. They will gladly accept any theories that state it’s not real, or it’s only ‘partially’ real.
People think you stay home and remain unemployed because you chose to. They will say you are always complaining about pain(I don’t, btw) and taking treatments for it because you don’t have any ‘major crisis’ in life. They will say you would forget the pain when you have a crisis. Everyone will take you as your family’s disappointment, will pity you for not able to work, will speak to you sympathetically because you are ‘not able to get married because of illness’.
70 and 80-year-old grandpas and grandmas tell me they also have pain here and there yet they still do things they have to do (none of those who told me so has any illnesses).
I think living with an invisible illness that is not yet completely studied is like constantly fighting a battle. Not because you want to fight or you don’t like being at peace, but because everyone else is fighting you.
It’s hard when people can’t understand, I think the bigger issue is a lot of people don’t want to understand. It’s easier to say you’re imagining it or crazy than to try and understand a legitimate condition. If your doctor doesn’t believe you it is worth trying someone else. I saw a pain specialist last year who said a lot of symptoms are CAUSED by the pain meds, rather than helped by them (been there, done that, side effects worse than the original problem and no relief to boot).
Wholistic therapy, yoga, physio, naturopathy, acupuncture help for some- sadly it’s a trail and error process. Don’t be afraid to seek a second, third, fourth opinion if you need to. Some doctors here in Australia will even admit to how little they know about it, so it can be hard to find someone.
Seek out a job you can enjoy that has a more appropriate demand on your body if you can and don’t let others make you feel bad for looking after yourself first. Build a support network of people who understand and build you up. Then try to ignore the haters (easy to say, hard to do) and stay true to yourself and your needs. There are some great ideas on this site as well, they’ve really helped me deal with things.
I hope you find some relief soon!