Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi there. I'm new here, and just recently diagnosed and I dont know what to do. Now that I know whats wrong I know I need to make changes in my life but I'm not sure which. Figured maybe asking some fibro veterns for thier input might help. (sorry for spelling in advance I'm dyslexic)
First, Hi im Jac, or Jackie, and I'm currently a college third year studying nueroscience (ironic I know). As much as I love it I seem to fall into a cycle every semester of starting out strong, getting sick, fighting through it, getting more and more fatiugued, leading to depression and isolation, and bearly scraping by at finals. Then over break I feel like a faluire and hate myself. (aswell as struggle to find a place to stay since I'm not on good terms with my parents to say the least) I go from 100's on tests and being involved in research to being in bed for two weeks and taking incompletes for my classes. Now at least I have an answer for why I always feel so terrible but no real cure. And now I'm questioning what to do with my life. I love science but I know the way I am practicing it now is unsistanable. I also love art and animation and considered switching majors in the past, but I also love sceince and labs. I was happy to change it until I thought there was a cure for my pain (we found a massive tumor on my ovary) It's been months since surgury and I dont feel any better. obviously I'm glad I dont have a tumor though. Anyway, Im not sure what to do. At this point it is impossible to switch majors to art without spending soooo much more money. I also never want to stop learning about the brain, or animation.( but no offence I can study animation at home and with practice) And if I dropped out I would have to start paying back my loans. I have no job or money really because of corona. I dont have the tools to sell my art for money or anything. and god the last two weeks have been sooo painful. (likley stress or cold from basement I'm staying in) I don't want to underestimate what I can do with my life and the dreams I want to achieve. But I also dont want to overestimate myself and be in pain and feel terrible when I fall short. I know I just unloaded a lot but, does anyone have any advice? or maybe share your experience when you were first diagnosed. Thanks so much for reading!
~Jac
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Another day, another ouchie?My bruised achilles tendon (don't ask) makes my foot numb. Wonky on meds, whacked it.Now, as to fibro:A lot of reports are going around some parts of social media that fibro (and dang near anything else) are caused by post-Covid, post-flu, post-vaccinations, post-pick-something.1. Your risk of death or serious complications beyond "ow, that shot hurt!" are typically...
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Years ago, I won a mirrored armoire from my job. It's in my bedroom but I rarely stand in front of it. Yesterday, I had to have a dexascan done so I had to change into a gown. There was a full length mirror in the changing room. I'm aware that I gained 5 to 7 pounds over the last year from cheating on Keto but I didn't know what it looked like. It was a reality check.
I was diagnosed 12 years ago. All of us understand how you are currently feeling. It takes time to adjust to a diagnosis of a chronic illness.
We recommend the book “Fibromyalgia for Dummies” to everyone. You can find it on Amazon. It will give you a comprehensive, easy to understand overview of this complex illness. It is also a good educational tool for anyone in your life that doesn’t understand.
Fibromyalgia can be caused by an accident, surgery, high levels of stress, childbirth or emotional abuse. The mechanism that triggers it is not understood. It is a disorder of the central nervous system. And, it does run in some families which would indicate there is a genetic component. There is still a lot of research to be done.
The three primary medications used to treat Fibromyalgia are Cymbalta, Lyrica and Savella. Only certain classes of prescribed medications work for the type of pain caused by Fibromyalgia. OTC medication like Tylenol will not work because there is no inflammation associated with Fibromyalgia. It is very common for people with this illness to have underlying health issues. At times, it becomes difficult to separate one from the other. Never assume a change in symptoms is just Fibromyalgia.
You should also be using a medication for sleep. Fibromyalgia interrupts the deep sleep cycle with short bursts of high intensity brain activity. Your muscles require deep sleep in order to repair themselves from the day’s activities. No deep sleep means higher levels of pain. We highly recommend that you have a sleep study done. That will pinpoint your sleep issues and in turn what is needed to establish sound sleep. This is a critical part of managing this illness.
Don’t expect instant results when you start a medication regimen. The longer a chronic pain cycle continues the harder it becomes to stop. Realistically, it could be a month before your symptoms improve. And, it takes time and tinkering to find the right medication/s and dosage.
Food can contribute to an uptick in pain. Deep fried food, nitrates and artificial sweeteners can all affect your pain levels.
Learning to pace yourself is very important when living with this illness. Continually pushing yourself results in flares which render you incapable of doing anything. Learning to say “no” and mean it without feeling guilty is a hard thing to learn. You have to be your own best advocate when it comes to self care.
Finally, we have a daily check in which you are welcome to join. Leo, the resident brainiac starts us off everyday. It’s a easy way to get to know everyone. Look for the puma avatar and the day of the week in the heading. Hope to see you around the neighborhood!
i have epilepsy (diagnosed age 19) and managed to have fibro diagnosed aged about 25, when it was "a young women get hysterical" disease. Fortunately, my rheumatologist *had* it, and he understood. OUCH.
Sleeping is KEY. Need a nap? TAKE A NAP. That, stress management, and a good doc help me enormously. We even managed an 8-year decrease in symptom severity that we called "remission". We haven't replicated it, but we always hope.
Since I have epilepsy, I cannot take the usual meds prescribed for fibro. I have to rely on staying low-impact active, getting sleep, eating healthy, the things that are good for anyone regardless of any diagnosis.
My other recommendation is: ALWAYS KEEP ASKING DOCS WHAT IS WRONG. My GP of 20 years (recently retired, alas) said ther ei s no fibro.... only things that make the symptoms and we can't find the cause YET.
And if the docs go in circles, start from scratch, as if you just wlked in, no previous diagnosis. Erse the assumptions. ERase all hypotheses. Erase it all, and a good doc will be able to do so, and look at blood work and scans without the word "fibro!" dinging around.
I had to give up on an MD b/c of health issues, but don't regret it. I keep up anyway. So if your health demands you NOT do something? Don't rule it out forever. For-now, okay. For-ever? Wait for the docs to tell you (and more than one doc, preferably) to say it's NO GO. (My right hip injury and I found that out the hard way. Learn young, and hurt less later, is my advice.)
Cheers, and see you around:-)
What I wish I had known when I was first diagnosed:
You can read about fibromyalgia, but your struggles are your struggles. They might vary differently than other people. What helps other people might not help you and it might take time to find what helps you.
This is something you learn to work with, you will not "beat" it. I thought for a long time that if I fought against fibromyalgia I would somehow win and beat it. It doesn't work like that. Don't spend your time spinning your wheels. It will just be time lost.
You CAN get better. After I spent all that time fighting against the fibromyalgia and making myself worse, I thought I was going to have to quit my job and work only part time. Once I learned to work with my body's responses and pay attention to myself and doing self care, I became healthier and didn't have to quit my job.
This disorder is aggravated by stress. If you don't understand this and do things to stress yourself, you may get worse.
You can get better, or lessen your symptoms by taking care of yourself and paying attention to your body: making sure you eat healthy, getting enough sleep or using sleep aids to helo get enough sleep, making sure that you don't over extend yourself when you exercise, taking time to focus on letting go of stress and not piling work on yourself. Using medication or other aids that are right for you. It took a while to learn what would help me. I went through several different medications only to give up on that route and settle on non-THC CBD oil.
While you're figuring this out, give yourself a breather. If you need to go on disability for a while, do it. If that's not for you, go more slowly at school. Whatever you need to do. I think the longer it takes to figure things out, the longer you will continue to suffer needlessly.
I can attest that when your health is suffering it seems like everything else in your life just goes down the drain. Now that my health is better, I feel like I can live again and work on my goals.
First, DON'T QUIT COLLEGE. Your life is not over. It's just going to take some time to adjust to the new you, to get used to a new way of living. I'm still adjusting myself. Before my fibromyalgia/arthritis diagnosis, I was attending college full time, taking two courses at a time, on campus two nights per week. When I starting getting sick, that was too much. I dropped to just taking one course at a time. Then I started only taking my courses that were available online. You'll need to speak with your school's academic advisor, then check with finance advisor to see how your financial aid would be affected. I recently had to sit out ONE semester, but I contacted academic advisor and financial aid before the start of the semester. Try not to overdo it. You know how you feel.
Second, DO YOUR OWN RESEARCH on fibromyalgia. In addition to websites, Youtube has some good informative videos. We have to deal with so much more than just pain.
Third, CONSIDER THE DOCTOR YOU ARE SEEING. Doctors are still learning about fibromyalgia, so although I had a well-meaning doctor, she still had a lot to learn about fibromyalgia. It's not easy, but see if you can find doctors in your area that are knowledgeable about fibromyalgia. You'll have to look at their websites and ask questions of the doctor's office.
Hope this helps. Don't give up, Jackie. It's hard, but you are worth the fight.