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.

Jump to:


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?

  • Pain, muscle twitching, dry eyes and mouth, hip bursitis, muscle and bone pain, extreme fatigue. (Samantha, 41 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)
  • All over severe pain. Headaches, I’m tired or can’t sleep or stay sleeping. Muscle movements. (Tina D., 49 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)
  • 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)
  • 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)
  • Itching feet, bad neck pain, IBS. (Deborah, 62 years old)
  • All over pain. Fatigue, depression. (Sherry, 69 years old)

Fibromyalgia Causes

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

Fibromyalgia Facts

What are some interesting facts about fibromyalgia?

  • It affects more women than men. (Samantha, 41 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)
  • Doctors don’t give pain meds too much. (Tina D., 49 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)
  • It ruins your life. (Linda, 57 years old)
  • Doctors don’t know how to treat it, much less understand it. (Hannah, 60 years old)
  • What doesn’t kill you makes you stronger. (Deborah, 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)

Fibromyalgia Pain Management

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

  • 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)
  • 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)
  • Needs pain medication. (Tina D., 49 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)
  • 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)
  • 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)
  • I am so much more tired when I am in pain. Heat works better on me than ice. (Deborah, 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)

Fibromyalgia Difficulties

What are the hardest aspects of living with fibromyalgia?

  • 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)
  • 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)
  • You can’t enjoy a day without pain. (Tina D., 49 years old)
  • Pushing through on the days when you have a flare. (Donna, 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)
  • 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)
  • Not being able to make long term plans. (Deborah, 62 years old)
  • I do nothing anymore, stay home for the most part. (Sherry, 69 years old)

Fibromyalgia Advice

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

  • KEEP GOING!! You are loved, and there are so many of us who understand what you’re going through. (Samantha, 41 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)
  • 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)
  • Pace yourself, rest when needed.. (Lynn T., 52 years old)
  • Continue on… (Shelby, 53 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)
  • 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)

Fibromyalgia Diet and Exercise

What’s been your experience with diet and exercise?

  • 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)
  • 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)
  • 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)
  • 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)
  • 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)
  • I am not very good at either, but it does not mean I stop trying to do both. (Deborah, 62 years old)

Fibromyalgia Treatments

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

  • Treatments help ease the pain, but do not take the pain away. (Samantha, 41 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)
  • I don’t have insurance. My husband is on disability. We can’t afford insurance for me. (Tina D., 49 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)
  • 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)
  • 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)

Fibromyalgia Recommendations

Anything you’d recommend for someone with fibromyalgia?

  • 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)
  • 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)
  • 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)
  • 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)
  • Do whatever makes you feel better. (Linda, 57 years old)
  • Understand the illness, and get support. (Hannah, 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)

Fibromyalgia Resources

What specific resources have you found most helpful?

  • 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)
  • 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)
  • 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)
  • Facebook groups. (Deborah, 62 years old)

Fibromyalgia Stories

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

  • 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)
  • The pain is unbearable. (Tina D., 49 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)
  • 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)