August 4, 2017

Fibromyalgia


Here’s a free collection of resources about fibromyalgia- Fibromyalgia blogs, videos, support groups, first-hand experiences and advice from people who have fibromyalgia, etc.

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Fibromyalgia Blogs

Here’s a list of fibromyalgia blogs- blogs and websites written by people with fibromyalgia, or are about fibromyalgia.

****Email alexbalinski@gmail.com to submit your blog to this list.***

Fibro Daze fibrodaze.com 2017
My Foggy Brain myfoggybrain.com 2017
Counting My Spoons countingmyspoons.com 2017
Fibro and Fabulous fibroandfabulous.com 2017
Seeking Equilibrium rosemaryl.blogspot.com 2017
The Fibro Frog thefibrofrog.blogspot.com 2017
FibroDaily fibrodaily.com 2017
Chronic Mom chronicmom.com 2017
Fed Up With Fatigue fedupwithfatigue.com 2017
Brainless Blogger brainlessblogger.net 2017
Learning to Balance Life Changes learningtobalancelifechanges.blogspot.com 2017
Skillfully Well skillfullywell.com 2017
Rebuilding Wellness rebuildingwellness.com 2017
Odd Socks & Lollipops oddsocksandlollipops.co.uk 2017
NFMCPA fmcpaware.org 2017
February Stars februarystars.co.uk 2017
Emily Suess emilysuess.com 2017
Being Fibro Mom beingfibromom.com 2017
A Life Well Red alifewellred.com 2017
Fibro Warriors – Living Life fibrowarriorslivinglife.com 2017

Fibromyalgia Support Groups

Fibromyalgia Support Groups On Facebook

  1. Foods For Fibromyalgia Facebook Group (22,043 members)
  2. Fibromyalgia Support Group (21,826 members)
  3. Fibromyalgia 2 Group (14,939 members)
  4. Fibromyalgia Symptoms Group (11,274 members)
  5. Living With Fibromyalgia Group (8,699 members)
  6. Fibromyalgia Awareness Facebook Group (6,715 members)
  7. Fibromyalgia Support Group (5,684 members)
  8. Tips For Fibromyalgia (5,259 members)
  9. Fibromyalgia & Invisible Illness Support Group (4,262 members)
  10. Fibromyalgia Mastery Group (3,331 members)
  11. Fibromyalgia Warriors Group (2,944 members)
  12. Fibromyalgia Awareness & Support Group (2,825 members)
  13. Fibromyalgia Warriors (2,351 members)
  14. Fibromyalgia & Weight Loss (2,241 members)
  15. CBD Oil & Fibromyalgia (2,093 members)
  16. Treating Fibromyalgia Naturally (2,026 members)
  17. Fibromyalgia Solutions Group (1,766 members)
  18. Fibromyalgia Canada (1,571 members)
  19. Fibromyalgia Support Worldwide (1,501 members)
  20. Men With Fibromyalgia (1,227 members)
  21. Fibromyalgia Support (1,177 members)
  22. Everything Fibromyalgia Facebook Group (1,072 members)
  23. Christian Fibromyalgia Society (940 members)
  24. Fibromyalgia Support Group (825 members)
  25. Fibromyalgia Butterflies (684 members)
  26. Mothers With Fibromyalgia (322 members)
  27. Fibromyalgia Support (305 members)

Other Fibromyalgia Support Groups And Forums

  1. Fibromyalgia Forum (11,182 members, 37,182 posts)
  2. Daily Strength Fibromyalgia Support Group (2,637 members, 46,170 posts)
  3. HealthBoards Fibromyalgia Message Board
  4. Spine-Health Fibromyalgia Forum
  5. HealingWell.com Fibromyalgia Forum
  6. Living With Fibro – Online Support Group

Fibromyalgia Survey

We’re surveying people about their experiences with fibromyalgia. Here will be a collection of their responses.

*This information is not meant to replace medical advice, and the information gathered via surveys may or may not be correct. Hopefully it will be helpful to you!

*Response format = Answer (Name, Age)


**Click here to share your experience with fibromyalgia**


Fibromyalgia Symptoms

What symptoms have you experienced?

  • Almost all of them (individually and at the same time) that are associated with this condition. (Emma, 28 years old)
  • Pain, fatigue, insomnia, vertigo, eye problems, depression. (Edward, 29 years old)
  • Wide spread pain, fatigue, restless legs, tight muscles, feeling cold when it’s warm. (Christine, 33 years old)
  • A lot, pain, fatigue, brain fog, IBS, problem speaking, blurry vision, dizzy, breathing problems, migraine, sound & light sensitivity. (Tami, 37 years old)
  • Pain all over. Itchiness. Numbness. Stinging feeling. Burning feeling. Muscle spasms. Fatigue. Hair thinning. Brain fog/confusion. Memory loss. Stiffness. Dizziness. Nausea. More severe symptoms than others who catch common seasonal illnesses. Loss of use of hands at times. Difficulty walking. Shortness of breath. Severely dry, flaky skin. Sleeplessness. Loss of will to live. (Melissa, 38 years old)
  • Aches and pains headaches etc. (Steph, 38 years old)
  • All over body pain, leg pain, numbness, dizziness, fibro fog. (Tara, 38 years old)
  • Endometriosis, Irritable bowel syndrome, Interstitial cystitis, Body aches, fatigue, GERD, Tennis elbow, Reynaud’s phenomenon, depression. (Sara, 40 years old)
  • Pain, sweating, and bad rest. (Emma, 41 years old)
  • Pain, muscle twitching, dry eyes and mouth, hip bursitis, muscle and bone pain, extreme fatigue. (Samantha, 41 years old)
  • Migraines, neck pain joint pains shoulders pain spasm. (Yamy, 42 years old)
  • Pain in weird places for unknown reasons, fatigue, insomnia, anxiety , sweating, general ill feelings. Headaches, body aches, flu like symptoms. (Jennifer, 43 years old)
  • Chronic pain, fatigue, and insomnia. I also have epilepsy which sometimes makes my symptoms worse. (Amy, 45 years old)
  • Pain, exhausted, fatigue , depression anxiety all unexplained. (Jill, 45 years old)
  • Pain throughout body. Joints swollen. Bowel syndrome. Leg syndrome. Brain fog. Sleep issues. Depression. Head and tension aches. (Melike, 45 years old)
  • Almost all of the symptoms. (Patricia, 45 years old)
  • Extreme fatigue, numbness/tingling/in all my extremities, tmj , random muscle pains all over, joint pain, brain fog, short term memory problems, vertigo, migraines , worsening depression, high anxiety, back pain. (Rachel, 45 years old)
  • All other aches, headaches, brain fog, IBS, sensitive to scents, tender pain points, anxiety, depression. (JW, 46 years old)
  • Pain, mental fog. (Connie, 46 years old)
  • Stiffness, numbness, pain, stabbing pains, piss of leg use, feeling tired and drained all the time, not being able to sleep and the list goes on. (Audrey, 47 years old)
  • Pain all over, ribs hurt, off and on depressed. (Loretta, 49 years old)
  • Aches, sharp pains, anxiety, depression, insomnia etc. (Theresa, 49 years old)
  • All over severe pain. Headaches, I’m tired or can’t sleep or stay sleeping. Muscle movements. (Tina D., 49 years old)
  • Aching bones, sore muscles, crawling/tingling sensations in hands and feet, migraines, shoulder pain, night sweats. (Beth, 51 years old)
  • Generalized pain, along with targeted pain. Primary areas are upper shoulders/neck area, lower back, hands, elbows, hips and knees. Feet pain in the evenings. Sleep deprivation, brain fog, loss of concentration. (Donna, 52 years old)
  • Severe pain, Fibromyalgia fog, insomnia, extreme tiredness, temporary paralysis, unusual swelling, rashes, extreme sweats, extreme coldness, depression, migraines, loss of appetite. (Garry, 52 years old)
  • Nerve pain, ankle swelling, skin crawling… (Lynn T., 52 years old)
  • Pain, headaches, teeth aches, joint aches, pain through out my whole body, passing out, bruising, blurry vision, IBS, weight loss/weight gain, depression. (Shelby, 53 years old)
  • Almost every symptom there is. From aches to stabbing pain, ibs, eye problems, sensory overload, etc. (Terrie, 53 years old)
  • Shortness of breath, muscle weakness, chest pain, chest tightness, heart palpitations, chronic pain, numbness tingling of hands feet, voice hoarseness, migraines, IBS, severe fatigue, depression and anxiety. (Lori, 54 years old)
  • Pain’t all over. (Sylvia, 55 years old)
  • Pain everywhere, headaches, migraines, moody and cranky from pain, stiffness. (Tammy, 56 years old)
  • PAIN From Head to toe :'( Right now mostly in my hips legs & neck. (Betty, 57 years old)
  • Pain everywhere. (Kate, 57 years old)
  • Pain, fatigue, loneliness. (Linda, 57 years old)
  • Back pain, all over pain, brain fog, extreme fatigue, lack of focus, infrequent good days, imbalance, something always hurts, anxiety, hypertension, slow moving, etc. (Hannah, 60 years old)
  • Stiffness, painful joints, brain fog, itching, the list goes on. (Lorraine, 60 years old)
  • Itching feet, bad neck pain, IBS. (Deborah, 62 years old)
  • I have all the typical symptoms. 6 types of pain: anxiety, depression, IBS, TMJ, fibro, fog, tinnitus, insomnia, electric shocks, exhaustion. There are more but this is a brief list. (Jeanne, 62 years old)
  • Pain, fatigue. Insomnia. Blurred vision. Brain fog, light and noise sensitive, and more. (Jim, 62 years old)
  • All over pain. Fatigue, depression. (Sherry, 69 years old)
  • Pain in most places, sore tongue, tired, grumpy, need at least 10 hours sleep, pain in chest. (Margaret, 70 years old)
  • Pain of course, weakness, foggy some days. Falling. Have hurt myself, needing surgery. (Toni, 73 years old)
  • Pain, restless sleep, light and loud noises bother me, cant work, lack of concentration, cant remember, anxiety and depression etc… (Anonymous)

Fibromyalgia Causes

Is there anything you believe contributed to or caused your fibromyalgia?

  • I could attribute one thing for a physical injury and one thing for a psychological trauma. Considering the time I started experiencing symptoms, I would lean more towards the psychological trauma. (Emma, 28 years old)
  • Abuse. (Christine, 33 years old)
  • Stress. (Tara, 38 years old)
  • Stress and just life. (Jill, 45 years old)
  • I believe I’ve had it from a young age however when I was a small child I experienced some trauma and lived with verbally and emotionally abusive parents. (Rachel, 45 years old)
  • Having Multiple Sclerosis. (Connie, 46 years old)
  • Possibly a fall in 2005. (JW, 46 years old)
  • I believe that I have had it for years but a bad car accident brought to light for the doctors. (Theresa, 49 years old)
  • 2 years ago the stress of just going into remission from my cancer and my husbands cancer spreading to his bones, then this past Jan. my best friend died of cancer and my husband started chemo and it was just to much for me, so I guess stress is the cause? (Tammy, 56 years old)
  • Car accidents, family deaths, lots of hard times growing up. (Anonymous)

Fibromyalgia Facts

What are some interesting facts about fibromyalgia?

  • It’s still very much there on “good days”. It has a profound effect on your mental health. It can be managed if you are very selfish for yourself in the beginning and you take the time to learn about yourself all over again. (Emma, 28 years old)
  • The theory that it may come from a response to trauma is interesting. (Edward, 29 years old)
  • One minute you can feel fine and the next you can barely move because of the pain. (Christine, 33 years old)
  • It’s torture. (Tami, 37 years old)
  • Its effects are so varied between patients, and even in the same patient over time, that it’s difficult to explain. (Melissa, 38 years old)
  • Nobody believes you. (Steph, 38 years old)
  • Everyone is different with symptoms. (Tara, 38 years old)
  • Medical providers are ignorant. (Sara, 40 years old)
  • Being unable to control sweating and body heat. (Emma, 41 years old)
     It affects more women than men. (Samantha, 41 years old)
  • That there are so many symptoms, no cure, and so many people have it both men and women. (Amy, 45 years old)
    Each day is a new day. Each day you experience something new or added. (Melike, 45 years old)
  • That it comes and goes in waves, but is never truly gone. (Patricia, 45 years old)
  • Nothing about it is interesting to me is awful but its interesting how much cannabis helps above anything else. (Rachel, 45 years old)
  • Many of my Fibro symptoms overlap my MS symptoms. (Connie, 46 years old)
  • That it comes and goes it’s never the same pain. (Loretta, 49 years old)
  • Doctors don’t give pain meds too much. (Tina D., 49 years old)
  • Everything is so random,one day is fairly okay and the next is the worst imaginable, with no reason for it. (Garry, 52 years old)
  • A cure would be good. (Lynn T., 52 years old)
  • It changes everything about who you really are/turns you into a different person. (Shelby, 53 years old)
  • That we in one form or another have experienced some form of trauma. (Terrie, 53 years old)
  • Not many doctors believe in it. (Lori, 54 years old)
  • No known cure. (Sylvia, 55 years old)
  • It ruins your life. (Linda, 57 years old)
  • Doctors don’t know how to treat it, much less understand it. (Hannah, 60 years old)
  • It’s forever and it changes daily. (Lorraine,  60 years old)
  • What doesn’t kill you makes you stronger. (Deborah, 62 years old)
  • Even those who try cannot really understand how bad it is. Too many doctors don’t understand how it wreaks havoc on your life. It gets worse instead of better. There are no treatments that work on the disease just some that help mask the symptoms. (Jeanne, 62 year old)
  • Nobody believes you. (Jim, 62 years old)
  • No one seems to know why we have it. The doctor thinks it is all in your mind. (Sherry, 69 years old)
  • Seems a lot of people have it, all with different symptoms. (Margaret, 70 years old)
  • It is a mysterious and crazy problem. What works for some doesn’t work for others. I have been to a rhuematologist and my doctor. Between both right now not too bad. (Toni, 73 years old)

Fibromyalgia Pain Management

What’s your experience with fibromyalgia-related pain and pain relief?

  • I was prescribed painkillers leading up to and after diagnosis for two years. The dosage was increased according to the pain I was experiencing. The stronger they got (the strongest I allowed myself was Tramadol) the harder it was to concentrate on getting myself to a better mental and physical state. I decided that as I returned to work (I was just 19 at the time) I would stop taking the painkillers. It was extremely hard and took longer than I expected. It’s been almost ten years and I now only rely on ibuprofen on really bad days. (Emma, 28 years old)
  • Fibro has destroyed my life. The only relief I have for it is cannabis and kratom. (Edward, 29 years old)
  • There’s really no true relief. Anything that helps is only temporary. Muscle relaxers, hot baths with Epsom salts, biofreeze, heating pad, massage, and icy hot patches. (Christine, 33 years old)
  • Constant low level pain that nothing takes away. (Tami, 37 years old)
  • The pain and other symptoms have taken away my whole social life, and my career. The only relief I have found is CBD oil, which takes the edge off, and takes away my desire to just die. Sleep, when I can manage it, also provides relief. (Melissa, 38 years old)
  • I see the pain clinic. I have found a heating pad at my spine sometimes brings relief. (Tara, 38 years old)
  • It’s unpredictable. (Sara, 40 years old)
  • Lots of time and different Meds to get relief. (Emma, 41 years old)
  • First hand. It sucks. I’m on gabapentin and cymbalta, and the two of them working together definitely ease the pain, but do not take it away completely. (Samantha, 41 years old)
  • Awfall experience. (Yamy, 42 years old)
  • On going pain, nothing really helps. (Jennifer, 43 years old)
  • I’ve tried lots of pain relievers, and due to my seizures most of them I can’t take. Several of them had such horrible side effects it also made it harder to find anything that worked. (Amy, 45 years old)
  • Warm weather. Lack of humidity. Lyrica. Cymbalta. Thermal baths. (Melike, 45 years old)
  • The pain is ever present and pain relief only happens when I sleep through it. (Patricia, 45 years old)
  • The only time I get relief is using cannabis pharmaceuticals only barely take the edge off. (Rachel, 45 years old)
  • It’s just never ending. 😢 (Connie, 46 years old)
  • Pain relief dies not help. (Audrey, 47 years old)
  • I take Advil muscle relaxer when needed helps relieve the pain also on cymbalta and that helps also. (Loretta, 49 years old)
  • I have recently tried accupuncture and it works! (Theresa, 49 years old)
  • Needs pain medication. (Tina D., 49 years old)
  • Aleve and Meloxicam. (Beth, 51 years old)
  • I find that pain relievers do not work. Heat will work on occasion, stretching and keeping mobile helps. I use Cymbalta and Gabepentin, and have found relief with both, with little side effects. (Donna, 52 years old)
  • At most takes the edge off it. (Garry, 52 years old)
  • No relief from pain or exhaustion. (Lynn T., 52 years old)
  • I have described some of the pain as bad a giving birth! I find no relief unless I have strong pain meds! (Shelby, 53 years old)
  • My pain can be so bad I don’t even want to move, breath, blink, or get out of bed. I don’t take prescription drugs. I treat my pain naturally. (Terrie, 53 years old)
  • Tried many medications haven’t found relief yet. (Lori, 54 years old)
  • Nothing so far. (Sylvia, 55 years old)
  • It hurts all over and I can’t seem to figure out how to help with the pain and stiffness. I can’t sleep well because of the pain, I get cranky because of the pain and I just don’t want to be social anymore. (Tammy, 56 years old)
  • I was taking Savella and it was a God send but I don’t have insurance so I can’t get my meds or see a doctor. (Betty, 57 years old)
  • I take meds for pain, but if you can not stay stress-free they don’t help much. (Linda, 57 years old)
  • The best pain relief is to manage what I do and don’t do…baby steps…don’t stop, and don’t give up. (Hannah, 60 years old)
  • No good, nothing works. (Lorraine, 60 years old)
  • I am so much more tired when I am in pain. Heat works better on me than ice. (Deborah, 62 years old)
  • Nothing makes the pain stop if you take enough pain meds not to hurt you won’t wake up. Drugs that treat nerve and muscle pain help keep them calmed down but don’t do anything about the overall pain. (Jeanne, 62 years old)
  • It doesn’t work. (Jim, 62 years old)
  • I cannot take lyrics for to vision cymbals, Davila Zoloft was a waste of time. Tramadol worked, some doctors will no longer give it. Ibuprofen, unless I take up to 3200 mg it does not work- it also messes up my kidneys and liver. (Sherry, 69 years old)
  • Tens machine I use, and painkillers. (Margaret, 70 years old)
  • Cymbalta, Aleve, pool, pain patches, massages. (Toni, 73 years old)
  • Weed helps, pills don’t. (Anonymous)

Fibromyalgia Difficulties

What are the hardest aspects of living with fibromyalgia?

  • People not being able to empathize how bad things are. (Emma, 28 years old)
  • I have no life. I have no career, my only income is Social Security, many of my friends have left me. I barely get to leave my home because I live in such deep poverty. (Edward, 29 years old)
  • Not being able to function fully. It literally sucks the life out of you. (Christine, 33 years old)
  • Everything out together and starts to become overwhelming after so long and no end. (Tami, 37 years old)
  • Lack of energy to deal with the pain and just function. Pain, itchiness, numbness, muscle spasms interrupting sleep. (Melissa, 38 years old)
  • Everything. (Steph, 38 years old)
  • Cannot make plans. Can only go day by day. (Tara, 38 years old)
  • So little knowledge of the illness by the public. (Sara, 40 years old)
  • Tiredness and loss of energy. (Emma, 41 years old)
  • I’m unable to do as much with my kids. I feel awful when I can’t do something with them they have asked me to do. (Samantha, 41 years old)
  • Fatigue, always tired, can’t sleep. (Yamy, 42 years old)
  • For me, its wanting to lay around all the time. (Jennifer, 43 years old)
  • Being not able to do things that I used to do because of the pain or fatigue. Having to cancel family outings due to my pain. If I overdue it one day, the next few days I’m miserable. (Amy, 45 years old)
  • Daily tasks. (Jill, 45 years old)
  • Not being able to get out of bed. Losing the person you once were. Trying to understand, and cope with the pain. Losing your job etc., self dignity and respect. Feeling like a disabled person. Needing a carer. (Melike, 45 years old)
  • Not having the energy to work. (Patricia, 45 years old)
  • Everything. Not being able to do what you used to or should. Worthlessness anxiety and depression are harder to cope with than the pain. People looking at me and thinking Im not sick cause I do not look sick. Dr not educated are just brick walls and make it worse. (Rachel, 45 years old)
  • No relief from pain. (Connie, 46 years old)
  • The constant pain. Being unable to function and the lack of medical advice or support. (Audrey, 47 years old)
  • Not being able to keep up and never know what pain level is going to be. (Loretta, 49 years old)
  • That there isn’t enough knowledge about it, people need to know that it’s real and not made up! (Theresa, 49 years old)
  • You can’t enjoy a day without pain. (Tina D., 49 years old)
  • Trying to get out of bed when you don’t feel good. (Beth, 51 years old)
  • Pushing through on the days when you have a flare. (Donna, 52 years old)
  • The constant pain and tiredness. (Garry, 52 years old)
  • Fatigue. (Lynn T., 52 years old)
  • The way people look at you. My husband divorced me because he couldn’t afford me! He left me to be homeless! I’ve been fired from my last three jobs because I couldn’t keep up, I was too slow. (Shelby, 53 years old)
  • That it stole my life and I’m just a shell of my former self. Not working, losing my independence. That’s been the biggest thing, having to rely on my husband for everything. (Terrie, 53 years old)
  • Pain, fatigue, depression and anxiety, migraines. (Lori, 54 years old)
  • Never knowing how you will feel upon waking. (Sylvia, 55 years old)
  • For me, the hardest part is I have to care for my husband and I can’t take a day off, I can’t just rest, I can’t stay home and do nothing. Being a caregiver is tough when you can’t take time to care for yourself. (Tammy, 56 years old)
  • Not being able to do whats normal. (Betty, 57 years old)
  • Losing my endurance. (Kate, 57 years old)
  • I can’t do what needs to be done around the house. The isolation you feel because no one understands how you feel. The ridicule from every one. (Linda, 57 years old)
  • I see what my friends are doing at my age and I feel cheated. I’m 60, but I see how active my friends are at this age. I try to focus on what I can do, but sometimes it feels like it’s not enough. (Hannah, 60 years old)
  • The pain and the stiffness. (Lorraine, 60 years old)
  • Not being able to make long term plans. (Deborah, 62 years old)
  • Watching your whole life change from happy productive to miserable nonproductive. The pain and exhaustion, I just cannot take it sometimes. (Jeanne, 62 years old)
  • Nobody to talk to. (Jim, 62 years old)
  • I do nothing anymore, stay home for the most part. (Sherry, 69 years old)
  • Nobody believes what I have and what you feel like sometimes, and coping with the pain. (Margaret, 70 years old)
  • The simplistic things I can’t do. (Toni, 73 years old)
  •  Can’t work, social anxiety, depression. (Anonymous)

Fibromyalgia Advice

What encouragement/advice can you give others who have fibromyalgia?

  • I approached everything with the mindset of a child. I told myself that I had to forget everything from before and learn everything from scratch. How much i could cope with doing daily, the best foods to eat that wouldn’t add problems to any other symptoms, when to rest, how often to rest and I also learnt new ways to do the things I couldn’t bring myself to give up. For example, I loved long stenuous hikes while camping. So now we go less often and we walk easier, shorter routes. (Emma, 28 years old)
  • You’re not alone. A lot of people will not believe you, but you aren’t crazy. (Edward, 29 years old)
  • Try to be strong and on the good days do something you enjoy. Live as much as possible. It’s ok to not be ok. It’s ok to rest. Most definitely find someone you can talk to. (Christine, 33 years old)
  • Day at a time. Wouldn’t wish on worst enemy. (Tami, 37 years old)
  • Try CBD oil. (Melissa, 38 years old)
  • Do what you can each day. (Steph, 38 years old)
  • Try different methods of relief. What works for one may not for another. (Tara, 38 years old)
  • You’re not alone. (Sara, 40 years old)
  • Rest. (Emma, 41 years old)
  • KEEP GOING!! You are loved, and there are so many of us who understand what you’re going through. (Samantha, 41 years old)
  • Find a dr who will help. (Yamy, 42 years old)
  • Pray. Physical therapy makes it worse. (Jennifer, 43 years old)
  • Please don’t give up. (Amy, 45 years old)
  • Just keeping going and moving. (Jill, 45 years old)
  • You’re not alone. Some days are bad, some are really difficult. Some are mild. However we need to understand the illness and accept the changes. Keep searching for things that make you feel better. (Melike, 45 years old)
  • Its not in your head. Don’t give up. Find a good support system. (Rachel, 45 years old)
  • Stay strong and don’t give up. (Connie, 46 years old)
  • You will have good days and bad days but but keep pushing through you can do it. (Audrey, 47 years old)
  • Don’t give up keep trying I go exercise couple days a weeks it does help. (Loretta, 49 years old)
  • Keep living your life! You were given a diagnosis not a death sentence. (Theresa, 49 years old)
  • Have someone around you that understands the pain you’re in. (Tina D., 49 years old)
  • Stay mobile, find doctors who believe in FM, and support you. Research, but take advice at face value. What works for one person, including medications, may not work as well or at all for another person. For example, some Facebook posts are completely against medications such as Cymbalta, terrible side effects, etc. This has been a very successful medication for me. (Donna, 52 years old)
  • You do have good days as well as bad days. (Garry, 52 years old)
  • Pace yourself, rest when needed.. (Lynn T., 52 years old)
  • Continue on… (Shelby, 53 years old)
  • That life is worth living because one day it will be over. There is light at the end of that long dark tunnel. They are not alone! (Terrie, 53 years old)
  • Find a doctor who will help you. (Lori, 54 years old)
  • Hang in there! (Sylvia, 55 years old)
  • Just get up and do it, it hurts, just do your best to move through the pain, maybe tomorrow won’t be as bad or maybe it will be, but get up and be present as much as possible
  • I just deal with it the best I can. (Betty, 57 years old)
  • Try to be kind to yourself. This is the hardest thing for me, because I want to be like I was. This is not living. (Linda, 57 years old)
  • Research, join a good group, accept yourself, do what you can every day. (Hannah, 60 years old)
  • Just live each day. (Lorraine, 60 years old)
  • You are not alone. If you have to take it one hour at a time, then that is what you do. Try to live with fibromyalgia and not make fibromyalgia your life. (Deborah, 62 years old)
  • Find a good doctor who understands you and fibro, and will work with you to find relief. Don’t overdo on good days you will regret that for sure. (Jeanne, 62 years old)
  • Keep fit, try to do some form of exercise, it does help really. (Margaret, 70 years old)
  • Keep your chin up, be positive, and try. (Toni, 73 years old)
  • Hang in there, you’re not alone, there are good days and bad. (Anonymous)

Fibromyalgia Diet and Exercise

What’s been your experience with diet and exercise?

  • I put a lot of weight on while waiting for diagnosis (in the UK and they thought it was a spinal disc problem first) and from then I’ve really struggled to lose it. I have other conditions which effect my hormones too which also doesn’t help. (Emma, 28 years old)
  • I don’t exercise. It makes me hurt for days. My diet is horrible. My food stamps don’t allow for healthy meals. I eat Ramen noodles every day (literally). (Edward, 29 years old)
  • It doesn’t seem to make a difference unfortunately. (Christine, 33 years old)
  • I’ve tried change food doesn’t seem to make much difference. My experience with exercise is that for days I can’t do anything but rest after. Puts me in bed. (Tami, 37 years old)
  • A juice fast is the only diet change that helped. It only helped a little, and only during the fast. Other diet changes (eliminating sugar, dairy, meat) have not helped. Exercise is very painful, and requires a lot of recovery time afterward. (Melissa, 38 years old)
  • Can’t exercise, find walking difficult. (Steph, 38 years old)
  • I have not noticed a difference in symptoms. (Tara, 38 years old)
  • Moving helps A LOT. (Sara, 40 years old)
  • To painful to continue. (Emma, 41 years old)
  • Diet hasn’t changed anything. My pain level is too high to do any exercise right now. I can’t walk more than 10-20 minutes without my hips, legs and feet burning. (Samantha, 41 years old)
  • Exercise I get a lot of body pain after I am done horrible. (Yamy, 42 years old)
  • It’s almost impossible. (Amy, 45 years old)
  • I put on lots of weight. Exercise – thermal water walk. (Melike, 45 years old)
  • Diet and exercise have helped me a lot. My pain levels were reduced by nearly half when I lost 65 lbs. I took dairy out of my diet, and that helped with muscle and joint pain. (Patricia, 45 years old)
  • Haven’t noticed its helped much but I know I need to do better. (Rachel, 45 years old)
  • Poor diet, mild exercise. (Connie, 46 years old)
  • Good exercise does help. (Loretta, 49 years old)
  • Exercise has been hard due to being tired all the time but I try, diet I am still experimenting with. (Theresa, 49 years old)
  • I don’t work….exercise- you’re in worse pain after. (Tina D., 49 years old)
  • Targeted exercise is what I learned from my rheumatologist. Walking everyday and elliptical type of exercise. Not sitting too long; I get up frequently, if only to talk a quick walk around the building. (Donna, 52 years old)
  • Usually suffer from exercise and diet no different. (Garry, 52 years old)
  • I try to walk up to garden if I have energy. I try to eat as healthy as possible. (Lynn T., 52 years old)
  • Exercise? I hurt too bad to exercise. (Shelby, 53 years old)
  • I find myself reading labels all the time. I have found certain foods that never bothered me now make me sick. I try to stay away from processed foods and try to cook homemade as much as possible. (Terrie, 53 years old)
  • Minimal due to fatigue, many medications cause weight gain. (Lori, 54 years old)
  • Not much success. (Sylvia, 55 years old)
  • I’m on the ketogenic diet trying to help with inflammation which may help a bit, I don’t exercise and I wish I was doing so, but i’m a care giver to my hubby and time is precious.
  • It helps sometimes and not other times. (Linda, 57 years old)
  • Neither makes any difference really. Exercise used to leave me energized, where now I don’t experience that, although I feel better mentally, which is a plus. (Hannah, 60 years old)
  • Very hard to follow. (Lorraine, 60 years old)
  • I am not very good at either, but it does not mean I stop trying to do both. (Deborah, 62 years old)
  • Exercise for me is hard two artificial knees and have had hip surgery twice this year just got new hip last week. Keep moving when you can because otherwise it just gets harder. I have had to make some dietary changes no dairy, limit night shade, veggies, spicy is bad, I try to limit sugars and processed but its hard on tight budget. (Jeanne, 62 years old)
  • Helps. (Jim, 62 years old)
  • Have trouble losing weight again, I do walk when I can or sit on the beach. Fresh air makes you feel better, as does the sun, the warmth really helps. (Margaret, 70 years old)
  • Not so great. A lot of pain. (Toni, 73 years old)
  • Lack of energy to exercise. (Anonymous)

Fibromyalgia Treatments

What’s been your experience with treatments (medication, etc.)?

  • Cymbalta worked well for around a year before the pain came back. Lyrica was about the same. I have no other treatments. No one will give me pain meds. (Edward, 29 years old)
  • Injections help temporarily, muscle relaxers help temporarily, pain medication doesn’t always work, and honestly there’s no good treatment. We need a cure. What they have to manage it doesn’t really manage it. I’m on 90mg of Cymbalta and Baclofen. While it mildly helps, it’s not significant. (Christine, 33 years old)
  • Treatments help you deal with but nothing gives relief. Its torture. (Tami, 37 years old)
  • NSAIDS do not help. Acetametaphin and codeine helps a little. CBD oil helps the most. (Melissa, 38 years old)
  • Haven’t found the right one yet. (Steph, 38 years old)
  • Sometimes they help. (Tara, 38 years old)
  • Savella has been the best medicine. (Sara, 40 years old)
  • On the whole they do help. (Emma, 41 years old)
  • Treatments help ease the pain, but do not take the pain away. (Samantha, 41 years old)
  • Nothings work. (Yamy, 42 years old)
  • Doesn’t help. (Jennifer, 43 years old)
  • I’ve tried many, and am back to taking narcotics because of my epilepsy. (Amy, 45 years old)
  • Topamax has helped me about 20% since starting it about 3 weeks ago. (Jill, 45 years old)
  • Cymbalta, Lyrica 900 mg. Seretonin, sleeping tablets. Muscle relaxants. (Melike, 45 years old)
  • Nothing works unless it damages you in other ways.  It’s not worth the risk. (Patricia, 45 years old)
  • They don’t really help much. Some make other symptoms worse. Finding a good doctor who listens to you has been a struggle for 8 years. (Rachel, 45 years old)
  • Pain meds help, but they just make the pain manageable. (Connie, 46 years old)
  • I have not been given any for the fibro but I have pain relief for other conditions but does not help just takes the edge off. (Audrey, 47 years old)
  • So far good, controls most days. (Loretta, 49 years old)
  • I’ve been on 2. One gave me a very very dry mouth, the other I’m still on and can feel it when I forget to take it. (Theresa, 49 years old)
  • I don’t have insurance. My husband is on disability. We can’t afford insurance for me. (Tina D., 49 years old)
  • Nothing has helped me so far. (Beth, 51 years old)
  • I find the medication helpful. (Donna, 52 years old)
  • No treatment, just pain meds that don’t really help! (Lynn T., 52 years old)
  • Make sure when you talk to your doctor you tell them what you expect! I expect you to listen to me about my problems and here they are… what can we do to make me feel better? (Shelby, 53 years old)
  • Every pharmaceutical I have ever tried either I couldn’t handle the side effects or I had an allergic reaction. I haven’t taken any in about 5 years. I won’t ever take them again. (Terrie, 53 years old)
  • I don’t tolerate many medications. (Lori, 54 years old)
  • Nothing really works it only kinda makes it tolerable. (Sylvia, 55 years old)
  • Right now I have pain meds which at times will dull the pain and at other times do nothing for me, I’m on gabapentin and I am not sure if it does anything for me. (Tammy, 56 years old)
  • I don’t like being doped up from the pain meds but when it get really bad I wished I had some. I eat Tylenol & Ibuprofen like M& Ms. I’m sure my liver is gone. (Betty, 57 years old)
  • Acupuncture. (Kate, 57 years old)
  • It doesn’t help enough for me to feel normal. (Linda, 57 years old)
  • They have side effects I’m not willing to live with. (Hannah, 60 years old)
  • Works for a while. (Lorraine, 60 years old)
  • Medication is a touchy subject with me. I come from a family of drug addicts and alcoholics. So I don’t use them very much. (I don’t drink nor have I ever used drugs). (Deborah, 62 years old)
  • Nothing really works that well. (Jeanne, 62 years old)
  • Don’t work. (Jim, 62 years old)
  • None really, take amitriptalyne to help sleep and pain killers when required. (Margaret, 70 years old)
  • Depends on the day. (Toni, 73 years old)
  • Not good so far. (Anonymous)

Fibromyalgia Recommendations

Anything you’d recommend for someone with fibromyalgia?

  • Selfishness and rest. There’s only one you, so in order to be the best you, you’ll have to get selfish and rest properly. Learn what rest you’ll need before events and/or activities and take the time to make see you rest. You’ll enjoy then event/activity more and people will enjoy your company more too. (Emma, 28 years old)
  • Take it easy. Don’t force yourself when you don’t want to. (Edward, 29 years old)
  •  Hot baths with Epsom salts, biofreeze, massage, rest, and a therapist. (Christine, 33 years old)
  • Sorry so negatives but I can barely make it through a day. I haven’t found an upside or happy place. Every day is just so damn hard. (Tami, 37 years old)
  • CBD oil. (Melissa, 38 years old)
  • Eliminate as much stress as possible. Be easy on your self. (Tara, 38 years old)
  • Get help if your provider isn’t making you happy try a different one. (Sara, 40 years old)
  • Rest and more rest. (Emma, 41 years old)
  • Learn to go slowly, and rely on others. That has been the hardest thing for me to do. I need to learn to take it easy, and not over do it. (Samantha, 41 years old)
  • Find a good pain doctor and possibly a psychologist. (Amy, 45 years old)
  • Read, relax, get support from family. (Jill, 45 years old)
  • Warm weather. Lack of humidity. (Melike, 45 years old)
  • Only to keep working on keeping weight down, and don’t eat sugar. (Patricia, 45 years old)
  • Your doctors are important and communication between them is crucial. Don’t be afraid to say no OR RELAX AND RECOVER on days you can’t do much. Its okay, you have a chronic illness! (Rachel, 45 years old)
  • Find yourself a good pain doctor. One who is not afraid to prescribe narcotics. (Connie, 46 years old)
  • You can still progress with life just listen to your body and do not over do it and rest plenty of rest. (Audrey, 47 years old)
  • Don’t give up keep on doing anything you can. (Theresa, 49 years old)
  • Have good insurance to get pain meds. (Tina D., 49 years old)
  • Listen to your own body. Everyone responds to the various treatments, medications and exercise. Make sure that any treating provider is an advocate, and supports patients with FM. (Donna, 52 years old)
  • Deep tissue massage and other alternative treatments also counselling. (Garry, 52 years old)
  • Get a good GP who understands the illness, not thinking it’s all our heads! (Lynn T., 52 years old)
  • Just hang on there. (Shelby, 53 years old)
  • Have a good support system, lots of us don’t have that. Join some fibro groups for support. (Terrie, 53 years old)
  • Get help if your feeling depressed. (Lori, 54 years old)
  • Don’t give up. (Sylvia, 55 years old)
  • I don’t know what to say to this other than do your best. (Betty, 57 years old)
  • Do whatever makes you feel better. (Linda, 57 years old)
  • Understand the illness, and get support. (Hannah, 60 years old)
  • Turmeric, and rest when you can. (Lorraine, 60 years old)
  • Find a pal you can talk to. Try not to make the conversation all about how rough a time you are having, because that will make you feel worse. (Deborah, 62 years old)
  • Heating pad icyhot. (Jeanne, 62 years old)
  • Keep moving as long as you can. (Jim, 62 years old)
  • Tens Machine. (Margaret, 70 years old)
  • Just keep on going, rest when you have to. (Toni, 73 years old)
  • Swimming. (Anonymous)

Fibromyalgia Resources

What specific resources have you found most helpful?

  • Self research, self belief and positivity. (Emma, 28 years old)
  • Google scholar. (Edward, 29 years old)
  • Support groups on Facebook. (Christine, 33 years old)
  • Definitely not doctors. (Tam, 37 years old)
  • A friend I recently met who has had fibromyalgia for 10 years, and a few Facebook support groups. (Melissa, 38 years old)
  • Support groups. (Tara, 38 years old)
  • FB, specialists-pain md. (Sara, 40 years old)
  • My doctor. (Emma, 41 years old)
  • My neuroly is the only one that try to help me. (Yamy, 42 years old)
  • Having good doctors. (Amy, 45 years old)
  • My doctor. (Jill, 45 years old)
  • Weather. (Melike, 45 years old)
  • A few Facebook groups. The MS research does more for my fibromyalgia than the fibro research. (Patricia, 45 years old)
  • Facebook. (Connie, 46 years old)
  • Groups online. (Audrey, 47 years old)
  • Joining a group online. (Loretta, 49 years old)
  • Support from others who have it. (Theresa, 49 years old)
  • Don’t do too much and the pain will stay low. (Tina D., 49 years old)
  • No resources. (Lynn T., 52 years old)
  • My doctor. (Shelby, 53 years old)
  • Fibromyalgia digest. (Lori, 54 years old)
  • Online. (Sylvia, 55 years old)
  • This support group has been the best help, doctors are not helpful at all in my experience. (Tammy, 56 years old)
  • I have a kind doctor and support group. Learn as much about fibromyalgia as you can. (Linda, 57 years old)
  • Facebook groups, online articles. (Hannah, 60 years old)
  • Internet and DRK. (Lorraine, 60 years old)
  • Facebook groups. (Deborah, 62 years old)
  • These groups are helpful but don’t spend too much time on them. (Jeanne, 62 years old)
  • This new Fibromyalgia group on Facebook. Someplace to vent and learn more. (Toni, 73 years old)
  • Online fibromyalgia groups on Facebook. (Anonymous)

Fibromyalgia Stories

Share an experience you’ve had related to living with fibromyalgia.

  •  Painkillers put me in a depressive fog. I lost all track of normal everyday life. My sleep pattern and moods became erratic and i contemplated taking them all with alcohol. I have very little memory of what are supposed to be the best years of your young adult life. (Emma, 28 years old)
  • Fibromyalgia means loneliness. That’s my experience with fibro. (Edward, 29 years old)
  • Barely make it through work. My work is half what it used to be. I used to be a go to person expert now your lucky to get an answer. (Tami, 37 years old)
  • I started a new relationship shortly before experiencing the first symptoms. Since then, my ability to function has deteriorated. I used to be the strong one in the relationship, but now I need him to help me with day-to-day activities like shopping, cleaning, and cooking. I feel guilty, like I pulled a bait-and-switch trick on him, even though it was nothing I could control. (Melissa, 38 years old)
  • I went on a trip to Cancun with my work. After meetings I needed to go nap while others were out having fun I was in my room sleeping. I felt robbed of a wonderful experience. (Tara, 38 years old)
  • Stopping Savella because of the cost really wasn’t a good idea, I couldn’t get out of bed. (Sara, 40 years old)
  • Cancelling many family outings. (Amy, 45 years old)
  • I lost everything. My job, house, husband, study. Animals. (Melike, 45 years old)
  • I find that if I think about the coming day’s work, by the time I need to be working, I’ve over stressed myself, and cannot get the work done. This happens a lot. (Patricia, 45 years old)
  • Waking up every morning with pain in the cartilage between my ribs. (Connie, 46 years old)
  • Legs were hurting, by the afternoon the pain was worse so went a and e after about 40 minutes was unable to even drag my legs the pain was never like before. Left on crutches and suffered at home. (Audrey, 47 years old)
  • I have have brain fog and I have to write down dates and activities or I won’t remember. (Loretta, 49 years old)
  • Dealing with being tired all the time. I am lucky to have 2 wonderful boys that understand and help out but I feel so bad when I can’t even clean my house. (Theresa, 49 years old)
  • The pain is unbearable. (Tina D., 49 years old)
  • Lack of empathy from others with the invisible illness. (Garry, 52 years old)
  • Fibromyalgia changed my life completely. (Lynn T., 52 years old)
  • I know you have to stay hydrated with this disease, I was down and out with the pain, and didn’t eat or drink for a couple of days, I got up to go to the bathroom and passed out. My sister called the ambulance and I was dehydrated. (Shelby, 53 years old)
  • Had to stop working. (Lori, 54 years old)
  • Everyday, living is a struggle. (Sylvia, 55 years old)
  • I HATE IT. (Betty, 57 years old)
  • I lost my relationship, my job, any social life I once had. (Linda, 57 years old)
  • An example is, I find myself talking, and not knowing what to say or how to say it. (Hannah, 60 years old)
  • My life has changed over the years, it has made me slower, but I am alive, and trying to enjoy my new normal. (Deborah, 62 years old)
  • Falling, and walking like I am drunk. (Toni, 73 years old)
  • It’s the worst thing that could happen to me physically. (Anonymous)