What do you know about Fibromyalgia? Unfortunately lots of people are still not aware of the condition or the terrible effects it has on both sufferers and their families.
Fibromyalgia (FMS) is an invisible illness, we may look fine on the outside but we are in so much pain. Most people look at me and think there is absolutely nothing wrong, but so many things are a struggle. I feel old before my time.
There is no cure for Fibromyalgia, it is a long term condition, it is chronic pain, we sometimes have good hours or days but it will return with a vengeance. The pain varies in intensity from moderate to severe and we can feel it anywhere – my shoulders, neck, left arm, left knee and hips are where I feel the worst pain – I have severe burning, throbbing and shooting or stabbing pains. It can consume my every thought, it’s like being a prisoner in my own body. I take opioids and other strong pain killers but they mostly only take the edge off the pain.
Fibromyalgia not only causes significant pain but also quite severe fatigue, and it can interfere with our ability to carry out daily activities. I’m often so exhausted, everything becomes an effort; it’s like trudging through a muddy field because my legs feel so heavy. Even lifting my arms is so tiring as they feel like lead weights.
We may feel so tired and exhausted but a refreshing sleep is impossible. Whichever position I lie in I feel such discomfort and when I finally fall asleep the pain wakes me up again. In the morning I’m so stiff that even getting out of bed or getting dressed is difficult and takes so much energy, I dread walking up and down the stairs as it hurts so much – I have to get up earlier than normal for work because it now takes me longer to get ready for the day ahead.
We can also experience a variety of other symptoms including:
- temperature sensitivity
- headaches
- cognitive and memory problems (sometimes referred to as ‘fibro fog’)
- numbness or tingling of the extremities
- irritable bowel syndrome
- painful menstrual periods
- restless legs syndrome
- depression
- bladder problems
- sensitivity to loud noises or bright lights.
Some people may have a genetic predisposition to the condition, and events – or extreme stresses on the body such as surgery, trauma or infections – may act as a trigger.
Living with fibromyalgia is challenging, it can affect every part of our lives – mind, body, and spirit – but we have to find the strength to carry on and live with the pain and fatigue. Writing this blog keeps me going, my little challenges (learning to bake, cook and even make my own washing powder, soap and gifts) help distract me from the painful symptoms of fibromyalgia and the support and kind comments I receive make me smile and keep me motivated :)
We need to raise awareness about Fibromyalgia, we need the government and the health department to recognise this illness for what it is, a debilitating life-changing illness and give more funding to help find a cure so that we can find a better life free from severe pain and fatigue.
Keep smiling :)
Claire
x
Do you get disability for fibromyalgia ?
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It is covered under the 2010 disability act.
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Claire, this was such an interesting read. Given I had never heard of fibromyalgia before, you have already succeeded in raising awareness. Plus all the comments above are a definite testament to this. Look forward to reading more of your blog x
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This is so inspiring to those who have just been diagnosed with this disease. I have had fibromyalgia for over 10 yrs and it has always felt good to me to know I am not alone in what is happening to my body as well as my mind. Thanks so much for sharing. :D
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Thanks Rebecca, you are definitely not alone xx
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This is a brilliant post – you have shared simply but effectively exactly what this condition is, and what it does to you. Kaz x
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I’m really struggling with throat and stomach pain at the moment. Does anyone else have this? Any advice please?
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Thank you so much for setting up this blog. I have not been “officially ”
diagnosed by seeing a rheumatologist -I have to wait 2-3months for that. But my gp has carried out various tests over the last several months for my pain I had been feeling in muscles and tiredness, and everything came back negative, she then said good chance it was Fibromyalgia and gave me a print out to read.
I was numb and felt so alone until I read your post and it made me cry, as I knew then there were people out there knew how i was feeling. Thank you so much xxxx
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Your comment has brought tears to my eyes. The NHS moves slowly but hopefully you will find some relief with pain meds. We are in this fight together xx
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Thank you xx
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My initial responce to this was way to much.. It’s something I wouldn’t wish on anyone :(
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I wouldn’t wish it on my worst enemy but we have no choice x
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I am on pinterest all the time and it is so nice to find all kinds of pins about fibro and chronic pain. It is beyond frustrating when no one understands and people think its a big joke and not real. It is also very interesting to learn about so many other symptoms of fibro, which I have, but didn’t know that it could even be caused by the fibro. The entire time I was thinking I am going nuts because of all these strange things going on with me. I feel a little less insane now-just a little lol. Look forward to following your board! Thank you!
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Hi! Thank you for this blog, it’s wonderful :) I was diagnosed in 2014 and learning to live with my new diagnoses so finding things like this is always so great so thank you so much for sharing your experience and thoughts!! I wanted to share a fantastic support website ( and mobile app) just for us fibro sufferers that I’ve found to be the most amazing lifeline, its http://www.myfibroteam.com. I use an iPhone app they have but it’s strictly for fibro people to talk and vent and help each other get thru each day. There is always someone wonderful to talk to when you are feeling overwhelmed. I hope if you didn’t know about it maybe you’d find it helpful too :)
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Thanks for stopping by and leaving such a lovely comment :) I will definitely check it out x
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I just happened to find a woman on Pinterest that posted this on her Fibro board. I was diagnosed five years ago, but I am sure I have had it most of my life. I have meds that help me now, but there is SO much that people don’t understand. A few of my doctors are sympathetic and understand. Some of them don’t even think it is real, because there is no definitive test for it. I don’t understand them. I thank God I have such an understanding husband. I would never make it otherwise. I hope to return here more often. Jenny
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Hi Jenny, thank you for stopping by :) I’m glad that you have seen some doctors that understand fibromyalgia, I’m sure they are the younger doctors who have studied about it in medical school. It sounds like your husband is a keeper :) Take care xx
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Hi Claire: Although I don’t suffer with fibrimyalgia, I do battle hypothyroidism. So I have studied it through numerous drs, nutritionists, and health coaches. I do believe I am correct in saying they are both autoimmune diseases. As the current medical establishment seems to not offer much hope or knowledge in treating many ailments, their strenth lies in making the initial diagnosis. Once you have that, there are vast networks of resources to explore to take your health back through diet, supplements and naturally working with your body to help heal yourself. Most western medical Drs drug and cut. They really don’t know nutrition and healing. However, many have explored beyond our failing system and there are numerous networks of them working to create better options for actually seeking out root causes to bring real healing. I can suggest a few for you to explore and they will lead you to a vast network of many more. There is so much info available online and a good place to start is with Dr Ax, Suzy Cohen, Dr Sara Godfried, Dr Alan Christianson and JJ Virgin. There is so much to learn from them. I wish you the best on uour healing journey!
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Living with fibromyalgia has been a nightmare for me. I have suffered through doctors who think I am faking these symptoms or the extremity of pain. Many physicians don’t take this condition seriously. It is frustrating, upsetting and painful enough to live with this condition without having to deal with the disbelief of those who should be working to relieve your symptoms. Many of the symptoms I have experienced I did’nt know we’re fibro related till I started reading more information like what you have shared. Thank you and all those with fibromyalgia for sharing. Keep up the good work.
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I hope you find a good doctor soon Cheryl, my GP is very good at understanding fibro, change GP if you have to, the younger doctors study about fibro in their training :) x
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Hi, Claire! Thank you for the beautiful writing about such a difficult and confusing illness. I have suffered with fibro for well over 20 years now. In the “earlier days” of being diagnosed, there was so little information out there on this illness, and SO FEW doctors who knew of it or even WANTED to know of it! Yes, I have made all the rounds of going from doctor to doctor, test after test. And if I went to an orthopedist or dentist or even my GYN — they were all men too, by the way — they insisted that fibromyalgia was “a garbage can diagnosis” for a bunch of symptoms that’s all in the head, and there is no such thing as fibromyalgia. They would look at me with disbelief and even horror at the medications and pain relievers the rheumatologist and later the pain management specialist would have me on, saying, ” My god, you need to get off that stuff! You can’t take that drug! Don’t you understand they (the other doctors) are wrong and are just placating and feeding into this hoax of an illness?” Imagine now, being me, in pain, standing in this doctors office or exam room, being berated and made to feel stupid and insignificant for taking pain meds and for feeling the way I do. Ultimately, especially in the really old days, I would often get, “Have you been to a therapist and have you talked about this? Is everything okay with you and your husband? Are you under stress? Do you feel depressed?” Wow, I thought. This person REALLY doesn’t get it! We are ALL under stress in this day and age (yes, even then). I have an ABSOLUTELY wonderful, caring and SUPPOERTIVE husband. No, the only thing that gets me somewhat depressed is listening to doctors/people like you who are narrow minded and want to make everything that doesn’t fit into the symptoms from a book, become something psychological. And I DO agree that EVERYONE could spend some time with a wellness coach, therapist, mentor, etc and truly learn about themselves — but it most likely, for those suffering from fibromyalgia, not do ANYTHING to stop the pain. But the right therapist or program or acupuncturist or reiki practitioner CAN help you by teaching you skills and techniques to help LESSEN some of the pain, and skills to not let the fibro pain spiral into more symptoms. Having had certain symptoms develop when I was in in my teens (yes, it can actually start that early! I have students who have been diagnosed that early too), but often we travel from doctor to doctor chasing relief from the SYMPTOMS: Got IBS, you go to a gastroenterologist. Got constant headaches or get dizziness? Go to a neurologist. Got joint pain? Go to an orthopedist. Got anxiety or panic attacks? Go to a psychologist. And as what happened to me, I got “Labeled” with anxiety issues, when in reality, it was all fibromyalgia! For YEARS I felt and unfortunately believed (because we TRUST our doctors) that I truly suffered from panic attacks! Eventually I couldn’t drive, didn’t want to stray far from the house, wouldn’t go to restaurants or second floors in department stores. I stopped going to these places because I got anxious and then had all these symptoms that were so horrible. Sound familiar to anyone out there? Until I realized, through a lot of reading, research and some very GOOD, KIND and educated doctors, and I really looked at the cause and effect. And what I discovered changed my life 180 degrees: My “panic attacks” DID NOT cause the symptoms!! It was COMPLETELY the other way around!! It was the symptoms (of fibromyalgia — and there are many!) that CAUSED THE PANIC/ANXIETY ATTACKS!!! This was HUGE! To realize I was MISDIAGNOISED and Labeled with something I DIDN’T EVEN HAVE! It is this realization that changed my life completely. I now am traveling, doing things, and have a much brighter life (yes, even with the fibro!). The misdiagnosis had so totally stifled my abilities to do things. So now, with this new knowledge, I was able to have MORE CONTROL. To be in charge of my life, my diagnosis, my choice of doctors and meds. My advice is to find a doctor you feel good about, someone who feels like the right fit to help you. Be guided by your gut instincts — it is never wrong! You DO have power and control, but only if you exercise that control, will you get past wrong labels and gain the strength and conviction to deal with insensitive or judgemental people. If you need to take a nap, then take it! If you have a day of excessive pain, do less that day, or put that activity off for another day. Laundry and vacuuming CAN wait — take care of yourself first — WITHOUT FEELING GUILTY! If you can’t sleep, read a book. Just resting in bed is much better than the constant worry about NOT sleeping. Explain to your friends what you have — fibromyalgia, an inflammatory illness that brings about these (explain) symptoms. No one can help you more than you can help yourself. Awareness is the key. I don’t hide my problem — I WANT to educate people, let them know this is VERY REAL and VERY debilitating and frustrating. We don’t like it, so believe all of us when we say, we would appreciate more thoughtful interactions and not a roll of your eyes when I explain I am tired today, or I can barely move today, or I have tears in my eyes because I am just so tired of pain and feeling crappy. Eventually, there WILL be an answer and hopefully a cure is on its way. Until then, I tell anyone suffering, to stay strong and read and listen and talk to other sufferers. You are NOT alone!
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Thank you for your kind words! It can be a struggle to find an older doctor that has kept up to date with medicine – fibro is very real and younger doctors are studying about it :) How dare misinformed doctors judge us! I wish they could just feel the pain and fatigue for just an hour and see how they cope! Only fibro warriors like ourselves truly understand our daily battle. We are definitely not alone xx
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