What is Fibromyalgia?

Fibromyalgia is a chronic health condition characterised by widespread muscle pain, chronic fatigue and poor sleep. The pain can vary in location and intensity and is often described as stabbing, aching or burning. It affects all four quadrants of the body and many people feel like they “hurt all over”. In addition, people with fibromyalgia have ‘tender points’ in specific areas of the body. When these tender points are pressed it causes pain in someone with fibromyalgia, whereas a normal, healthy person would only feel pressure.

Tell Me More About the Pain

It is thought that the way the brain processes pain is different in people with fibromyalgia. Fibromyalgia sufferers become overly sensitive to pain and we find things painful that we really shouldn’t. For example, I find that touching my upper arms can be painful! The technical terms are

The technical terms are hyperalgesia (being extremely sensitive to pain) and allodynia (feeling pain from something that shouldn’t be painful). In addition to being hypersensitive to pain, fibromyaglia sufferers can also be sensitive to noise, smells, chemicals, certain food and bright lights.

These sensitivities can sometimes feel like a ‘sensory overload’ and can lead to flare-ups of other fibromyalgia symptoms. Changes in the weather also interestingly can cause flare ups.

What is the Chronic Fatigue Like?

The fatigue can range from feeling tired to full on exhaustion similar to what you would experience if you were floored with the flu. I personally cannot remember the last time I felt full of energy or didn’t feel tired at some point during the day.

At it’s worst I end up crashed on the sofa and can’t bring myself to do very much at all. It sucks big time! On a bad day even doing simple tasks can be draining or downright impossible. Pacing yourself is extremely important and if you over do it on a good day, you find yourself paying for this by feeling crappy and exhausted for days following it.

Poor Sleep Plays a Big Part

People with fibromyalgia generally do not sleep well and often do not get enough deep restorative sleep. So we go to bed tired and wake up damn tired too, which sucks. Insomnia can be a big problem and many people find it difficult to get to sleep but I personally don’t have that problem.

I fall asleep easily but wake up a few times through the night. I’m only awake long enough to be able to see what time it is and I then drift off again. My sleep has certainly improved since having reflexology sessions and I have also found a difference through taking the supplement L-theanine.

I used to be more restless through the night and I stopped dreaming too but this has improved and I can even have periods where I sleep really well. Despite all of this I still suffer from fatigue, just not as severe as it was previously, and wake up feeling tired.

Are There any Other Symptoms?

Unfortunately there is a whole list of them!

» Cognitive problems, often referred to as ‘Fibro Fog’. Fibromyalgia messes with your brain big time! Let’s see… inability to concentrate, forgetting things, confusion, difficulty learning new things or recalling information. And my personal bug bear- saying the wrong damn thing without even meaning to. This can be saying a random word you don’t mean to say, muddling up the letters in words so that you come out with jargon or putting the start/end of different words together and coming out with nonsense. Fibromyalgia can make the intelligent person feel embarrassed and like a bit of a twat at times!

» Headaches– anywhere from mild discomfort to a full blown migraine.

» Hot flushes and feeling cold to the core. Your body cannot regulate temperature properly. Hello to feeling like you are going through ‘the change’ only to be frozen and looking for your hot water bottle the next minute.

» Tinnitus– an annoying, persistent ringing in your ears.

» Restless leg syndrome– feeling like you want to chop your legs off because of horrible, unpleasant sensations in your legs.

» IBS type symptoms.

» Bladder issues. Some days I think my bladder just likes to mess with me. I urgently have to pee a zillion times when there really is no need!

» Clumsiness/light-headedness/dizziness.

» Itchiness and skin irritability.

» Feeling low… well wouldn’t you be at times if you had to contend with all of the above?

This All Sounds Horrible! What Causes it?

Fibromyalgia is scarily common. It is thought to affect 1 in 20 people worldwide. Despite this, it is a condition that is not properly understood. Heck, some doctors argue it does not even exist (bullshit to that!). It primarily affects woman (though men can also suffer from it too) and there may be a genetic predisposition towards developing fibromyalgia.

It is believed to be triggered by a physical or emotional trauma but often the cause may be unexplained. In addition to what I mentioned above regarding the brain processing pain differently, people with fibromyalgia have been found to have lower than normal levels of certain hormones (serotonin, dopamine and noradrenaline). This may play a key role in the cause of fibromyalgia.

Fibromyalgia Preview

Improving Your Symptoms

I personally felt like I had tried everything and anything in an attempt to improve my fibromyalgia symptoms. A huge flare up in July 2014, which was severely debilitating and lasted for months, made me lose hope of ever feeling better. Right at the point where I was ready to accept that my health may never improve, I read a book called “Suffered Long Enough” by Dr. William Rawls. I resonated with this book and it sparked the fight in me to want to better my health. I have made significant improvements to my health and no longer take any traditional medications.

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  1. Pamela Arnold Reply

    This by far has been the most comprehensive list of symptoms I have found describing how I feel and what I am dealing with on a daily basis. Thank you

    • I’m glad you have found this helpful. Have you been diagnosed Pamela or on the journey to a diagnosis?

    • Anne Thornhill Reply

      Thank you for your very interesting blog..it covers all of the fibromyalgia symptoms and how we feel and suffer..I have tried all the meds that are given us and have multiple sensitivity, allergies and horrendous side effects with most of them..I felt like a toxic dump! 3 yrs ago I began to take control of by pain and fatigue and look for alternatives that were non invasive..like Actipatch, an electric magnetic device, that really helps my pain..tens machine, heat pads that relieve my aching sore muscles, copper bracelets that help the restless legs and nerve spasms, deep water aerobic exercise that helps strengthen the muscles..eating less processed foods full of additives and using homeopathic treatments for my fatigue..rest and pacing are still very important..and I found not eating after 8pm and drinking only 2 cups of coffee in the day helped promote better sleep..thank you x

      • Thank you for your kind comments Anne. I know what you mean. I haven’t had good experiences with medications and I actually wrote a post about this topic here. Like you, I have found the best progress with alternative treatments. It’s great you have found strategies to help too. Yes I agree that pacing is one of the most important aspects of dealing with this illness. Good sleep is definitely key isn’t it?

    • charlotte reynolds Reply

      I have just had bloods taken by the Dr. I really hoped she would say my thyroid was out of whack. She looked at me almost with pity that I should think such a thing. I have more symptoms of underactive thyroid than I could possibly imagine. She put her hand on mine and said “Yes, and so do many others.” So what is this saying? Go beneath the thyroid and check everything else is working in that line of body workings!! I am lost right now as this has brought me down big time. My husband came with me for his blood pressure check and at the end I felt she was really sympathising with him for having this person in his life bringing him down. Still smarting from that. There is nothing wrong with him!!

      • If it makes you feel any better Charlotte, I have been there too. So many times I wished and wished for my thyroid to show up as underactive. For me, my bloods are always normal. It is upsetting and hard to take because you are looking for that one thing that will show up as abnormal– I have been there too. Unfortunately, there is no easy fix. I would say that one thing to look into would be having your adrenal function tested through a saliva test. I did this privately. Other than that, for me it’s been a case of taking my health into my own hands. I would highly recommend getting yourself a copy of “Suffered Long Enough” by Dr. William Rawls as it’s really great for helping you to understand the imbalances in the body and how to create a healing environment in your body. He also writes lots of free articles on the blog on VitalPlan.com. It’s a long and hard road and far from easy but things can get better. I wish you all the best and if you want to chat more, feel free to drop me an email.

      • Debbie Phillips. Reply

        Charlotte, I have been told I have an under active thhyroid, it took years for that. I have had a tumour on my spine removed 15 yrs ago, then bowel cancer 5yrs ago. I have been suffering with fibro symptons all those years, then went through the menopause which put me into a deep depression,now my depression has lifted, but suffering more with fibro symptons and I am going back to the doctors to try again for a diagnosise. I thank God my husband and children love and support me. I would give up other wise. keep strong, keep trying to get help. Good luck.

        • Charlotte Reynolds Reply

          Gosh that’s a lot to go through. I think mine goes back to when I had a very bad attack by a cow, and I thought I was going to be killed. How I survived I don’t know. So PTSD is probably what started my Fibro.

    • Mary Harris Reply

      Sounds like me for the last 10 years,gonna bring this up to my Dr.on Friday!!! Thanks for sharing!

  2. Matilda ann Reply

    Great compilation of symptoms in a way all should understand as sufferers or caregivers.

  3. Pamela Hacker Reply

    You listed all the problems I have. I now have a name to the ringing in my ears. The ringing is so bad it gives me a head ache at times.

    • Pamela Hacker Reply

      I also have eye problems. They water all the time and cannot see out of my glasses for close up reading. My vision seems to change every day.

      • Vision problems seem to be rather common. I have the opposite problem to you and my eyes are dry and I have to use viscotears 3x per day. Have you asked your doctor to make sure your tear ducts aren’t blocked?

    • Tinnitus is really annoying. Mine’s I don’t notice unless it is quiet- then it’s just a constant noise in the background. Sorry to hear it causes you head aches

  4. Very well written… i wish i could express myself to family and friends like that. It’s so hard to explain why you feel tired and sore without reason!

    • It can be hard to get across to people just what it is like but perhaps even print this off and share it with them. I have learned that bringing down the walls and being more honest with people has increased my support network. It’s taken me a long time to feel comfortable enough to do that though.

      • It has taken me awhile to be able to make family and friends to try understand. No one will understand fully unless you suffer from it. You tell someone all your symptoms at once and you sound like a crazy person. It took a few years before my diagnosis in 2010. I have tried alot of things and refuse to give up just yet. Although there are days you are so depressed. I still work 4 days a week and find it very difficult but push through. Gentle hugs everyone!!

        • It is tricky for people to fully understand something they have never experienced for themselves and fibro is such a complicated condition. There are so many symptoms and I know what you mean. I used to feel the same, especially when visiting the doctor before I was diagnosed. It’s a shame that it often takes a long time for a diagnosis but I guess it’s down to it really being a diagnosis of exclusion. You are doing really well, stay strong, you’ve got this 🙂

  5. maria waller Reply

    I suffer with my legs, swelling & just lately feeling sickly inc everything you have mentioned !!
    I feel as if my fibro is getting worse, any idea if it is degenerative ?

    • Doctors do say that it is not a progressive illness but from my own personal experience, and from speaking to many other people with fibro, it does seem to be a common theme that symptoms get worse over time. However, I have made some great improvements to my symptoms from following a health regime that is set out in the book called ‘Suffered Long Enough’ by Dr William Rawls, so it is very possible to feel better too.

  6. Where is the information on the eye problems being related to Fibro?

    • I haven’t mentioned eye problems specifically in here (other than light sensitivity) because it wasn’t until recently that I was told mine were likely related to my fibromyalgia (this was after being tested for other conditions such as MS). From speaking to other people, eye issues such as blurred vision, pain and dry eyes do seem to be a common symptom with fibro. Here is a link to an article written by the Fibromyalgia Association UK that is worth a read: http://www.fmauk.org/general-articles-highlights-208/266-does-fibromyalgia-affect-eyesight

  7. I cried when I read this, have been having a flare as well, all stress related, its such a roller coaster. I did decide that I was nit going to allow this to control me any longer, right now the pain is not the issue, its all the other symptoms piled up at once, I walk appr 3 miles a day, up hill on treadmill, lost almost 20miss that I have been struggling with from the meds. I totally went off all the fibro meds, they were very toxic for me, I am now clearing negative things out of my life, a lot of weight has been lifted, words of encouragement, you are special, believe in you, change 1% of your life, you are on a different path!

    • Megan you are amazing! What an inspiring story and you have great strength and determination. Well done for taking control and for making these positive changes to your life. Thank you for your kind words of encouragement. Hearing from people like you helps to keep me fighting this.

    • I have just seen rhumatoligist all these symptoms I’ve got I started having ghosting vision saw eye specialist also night vision is affected. I have dry eyes too plus most of the symptoms listed x

      • Dry eyes are something I have too. I use viscotears (artificial tears) throughout the day, which helps a lot.

  8. My primary physician suggested that I might suffer from Fibromyalgia but my rheumatologist (I was diagnosed with Rheumatoid Arthritis last year) shot down that theory without much discussion. However, she has said again and again that my RA does not present itself like most cases she deals with. Your description is spot on with how I feel at times. It’s good to hear I’m not crazy but it’s sad to think about how many people feel this way. Thank you for sharing!

    • It’s really hard when you have a diagnosis that you don’t feel explains the full story. All I can say to you is you are definitely not crazy and even if you don’t get that Fibro diagnosis, there are many things that you can do to help improve your symptoms out with the traditional medical system. Take care

  9. This hits every feeling and every symptom i have ….feels like i need to put this on my back so everyone knows whats wrong with me !!!!! Thank you

    • It’s tough when no one understands exactly how we feel isn’t it? Hopefully awareness of this condition will continue to grow

  10. Very well written. I already have cognitive problems due to an bad accident 28 yrs ago on my 25th b-day on my way home for lunch when my car ended up underneath a semi truck suffering head and back injuries. I’m always in a Fibro fog. Half of my family don’t understand and I feel like they think I’m crazy. Then I have so many other health problems on top of fibro. The only ones that understand are a sister, daughter, husband, and my counselor. Thank you so much for this article and I will check out that book.

  11. Eileen Philips Reply

    Tears are running down my face because I feel like I have lost all hope recently living with every symptom you described. Over the past 4 years I have lost my ability to work even part time, (I use to be a teacher and working with children was my passion), my husband and son, (depression due to illness led to a suicide attempt and my ex left with my son and filed for divorce 4 days after I got out of the hospital), my home, financial security, and now am trying to find a home for my dog because I am too sick to care for him. I have tried anything and everything, from altering my diet, to prescription meds, supplements, counseling, to improve my health. My faith in God, and not wanting to hurt him or my sons or family is the only reason I am still alive. I thank you for what you wrote. I will check out the book you mentioned. I do pray for everyone who is affected by this illness. I have been dealing with a bad flare since March 17th, and have never had one last this long. God be with you and bless you.

    • Oh Eileen, my heart breaks for you. Fibromyalgia is such a cruel illness. Please do read the book and I would encourage you to reach out and contact Dr Rawls and the team at Vital Plan. If you are on Facebook, join the Restore Program group- https://facebook.com/groups/480089768807132YiyYou Vital Plan have helped me to feel better and have given me hope back. If you join the group you will see the same is true of many others.

    • Angela Barr Reply

      Hi Eileen, have just read your story, obviously this was written last year. My situation is so very similar to yours, it was like reading about me. As you wrote this quite a while ago I was wondering how things are for you now. I do hope that you are doing well. Hope you don’t mind me messaging you and would be lovely to hear how things are for you now. Gentle hugs.
      Ange Barr

  12. Has anyone looked in to high cortisol levels with regard to Fibromyalgia?

    • Hi Pam, I do think there is an abnormality in the HPA axis in people with fibro. There was a study in 2010 that found people with fibro had lower than normal cortisol levels, see here. I believe adrenal fatigue is commonly associated with fibromyalgia.

  13. Thank you so much for this great post. I am currently undiagnosed but have been living with postherpetic neuralgia from shingles for the past 2 1/2years with an increasing list if symptons, getting a proper diagnoses is a long & frustrating journey. Thank you for sharing your story so honestly & the information, I will be purchasing the book you recommend immediately.

    • You are very right- getting to the point of diagnosis is a long road. I think purchasing Suffered Long Enough is a great idea and I am sure you will find lots of info that you can implement to help you. Good luck!

  14. “Fibromyalgia can make the intelligent person feel embarrassed and like a bit of a twat at times!” You have just described my fibro fog down to a fine art. I work with customers face to face and sometimes it is as if I’ve had a stroke. I cannot piece on single sentence together or I come out with babble. I’m glad people are raising awareness, I had a recent examination on my spine he stated I had poor posture, he pressed on my rib and bottom of my spine, I jumped a mile…yet he still says nothing but “Oh your a bit tender there?”.

    • Hi Sarah, yes I can imagine that must be difficult for you! Sometimes your brain just feels like it’s not switched on at all. Often poor posture is a result of us being in pain– or at least that’s the case for me. It is something I have to bring my awareness to. If I am in pain my posture changes… I guess it’s a coping mechanism. But I don’t do myself any favours as this leads to me feeling worse. Have you ever tried any alternative therapies? It might be worth seeing if something like Bowen or Reiki would help with your spine alignment.

  15. Sarah Tait Reply

    I have also encountered eye issues in people with fibro. Personally I developed a detached retina and requires surgery…..am not alone in having eye issues. Be sure to get a good eye exam if you have fibro!

    • That must have been a very scary experience for you. I agree with you, it is important to have your eyes checked properly (even if you don’t require glasses) to ensure your eyes are healthy. Any changes then make sure to get a recheck. It’s worth it alone for peace of mind.

  16. Yup, these are my symptoms to a T. I’m currently having a bad flare-up and am in agony. Anyone have tips for getting through a flare-up?

    • Thanks for stopping by my blog Lesley. I’m sorry to hear you are having a bad flare. Hopefully this post will be helpful for you

  17. Hi Donna I’ve just found your blog whilst searching for information to grasp a little hope for myself and my family. I have a 21yr old daughter who is my world and following a diagnosis 3yrs ago for fibromyalgia her health has declined massively. She has all the symptoms listed and her condition at the moment is severe to the point of she’s practically wheelchair and bed bound. She has just tried to enroll is college but as she hasn’t been able to complete the same course due to her health two years running they’ve refused her application which has only resulted in her state of mind being more depressed. This week she has made me acknowledge her wishes for her funeral and thinks me selfish for wanting her to remain alive.

    • Hi Tracey, your comment is heartbreaking. I am going to send you an email rather than reply to you here.

  18. Amy Thacker Reply

    I was diagnosed with Fibro in June 2012. After reading what ever I found online and my Dr.’s must read list, I found that most of my symptoms fit, yet didn’t. After 2 years of my constant questions of this don’t fit “fibro” I was sent to a genetic Dr.. I was diagnosed with Elhers Danlos in addition to Fibro. The combination of two illnesses that are both chronic pain based was devastating. Exercise is the best treatment for fibro, while it is the biggest trigger for EDS. Finding that imaginary line of overdoing it seams impossible. One day I can walk to the gas station and recover quickly, and another day a simple shower zaps my energy for a day or so. Has there been any research on ways to find and identify that “overdoing it” line. Like possibly a daily journal or something to help one see a pattern? Thank you for your help.

    • Hi Amy

      I have to admit that I know only the basics about EDS. However, I have two blogging pals– Sarah in Wonderland and When Tania Talks— who suffer from both conditions. I am sure they would be more than happy to chat with you. Have you been referred to a physio at all? It might be a case of learning to adapt and do things a little differently. I can understand your frustrations. Exercise used to help me manage my fibro, now it’s a balancing act as if I do too much I get post-exertion malaise. I think I very likely have ME/CFS alongside the fibro.

      I think the most helpful thing to do is find your baseline. That is, what you can do in a day without causing an increase in symptoms. Even better if you can find out what you can do in a day and then wake up the next day feeling a little better. I talked a bit about doing this in this post here. It can be a frustrating process. My baseline is doing not much at all! However, I found staying at that for a couple of weeks lead to me gradually being able to do a little more. My rule is to do 50% of what I think I am capable of doing… or at least that’s what I try to stick to. However, I know life can get in the way sometimes.

      Keeping a journal can be a useful way of finding patterns or triggers. There could be specific tasks that are causing flare ups. Be careful with this though as I found it made me too symptoms-focussed and that had a negative effect on my mental health and it really brought me down. I do, however, check in with my body through the day and think about how I am feeling in that moment and what I can do to help me feel as well as possible. Hope that makes sense. If you want to chat any more, feel free to drop me an email 🙂

  19. Barb Thomas Reply

    Thank you so much for writing this blog, so many times I have tried to explain what I’m feeling to my son, who constantly tells me it’s all in my head. This blog post really explains well what it is like to have Fibro. Thank you so much.

    • Hi Barb

      You’re welcome, glad you found this post helpful. If anything, it’s good to know we are not alone in how we feel. Take care.

  20. For a long time I suffered in silence with all of these symptoms you have mentioned, until one day I sat down and wrote down every single symptom I had then went and saw my Dr. he ordered scans and x-rays which showed a small amount of arthritis in my spine and he seems to think thats it. Meanwhile my vision gets worse with wavy lines, my legs I could amputate they ache so much, my arms oh the pain. I’m now noticing episodes of ‘the dropsies’, has anyone else got the dropsies? Thank you for writing the blog, it’s a relief to know its NOT all in my head.

    • The symptoms of fibromyalgia can be scary, especially eye problems. I was so worried about MS at one point because of my symptoms, some of which were things like clumsiness and dropping things. I have personally found that symptoms such as eye problems and neurological symptoms are the result of me pushing myself too much and they have eased off now I pace myself better and live within my limitations. What I would say to you is to make sure you have other conditions ruled out first before your Dr reaches a diagnosis of fibromyalgia. It is most certainly not in your head.

  21. Chris Dzikowicz Reply

    Wow! You have done a very good job here, at describing symptoms! I have seen many, but so far this is the best! I hope you don’t mind my mentioning, I am Admin. of a chronic pain support page, @getoutofbedandfight. We would love to share your posts, and welcome you and any followers to join our journey of “positivity in pain”. ~Chris

    • Thank you so much for your kind comments Chris. You are more than welcome to share links to my posts, I would really appreciate that. Is this a page on facebook?

      • Chris Dzikowicz Reply

        Thank You Donna. Yes Get Out of Bed and Fight is a facebook page. We look forward to networking with you to raise awareness 🙂 ~Chris

  22. Michelle Osborne Reply

    Hi Donna thank you the post. Your symptoms you described are simalier to mine. My Doctor diagnosed me with Chronic Pain 4 years ago. I had no help from my Doctor I was bed ridden I had despression , off sick from work. It was the worse time if my life. It took 3 and half years to understand my illness. I’ve been through the pain clinic, pain management and was told I had over active Nerves. My lower back,Right hip and neck are be worse. I was on high Mediation. I had to research my illness on Google. Now
    I know now how to pace myself, I still hate waking up in morning and my body is in pain, I don’t get get enough sleep and never wake up refreshed.
    I use Elelectric Magnetic devices for my pain and on only half pain meds now. I did had to leave my job last Nov, which I know now it was the best decision I made as this was making me worse. I have supportive husband which I’m so glad. We moved to the beach last September which helps with my health and I have a small dog which he is so easy to look after. And now I’m under a new Doctor and he is so supportive and referred me to Rhumtology Clinic,and the appointment in Feburary. I should get Diagnosive of Fibro.
    Thank you for your post which helps people understand their illness .

    • Hi Michelle

      I am sorry to hear that you have had no help from your doctor, despite the severe health challenges you experienced. I can empathise with you, having being bed bound myself at one point too. That’s great that you have learned so much and taken control of your own health. We do have to be our own health advocates, don’t we? You are very brave for making the right decisions for you, I can appreciate how difficult and upsetting they can be but I fully agree that you need to do the right thing for you. I truly believe being able to accept change is a must for living as well as possible with fibromyalgia. I’m really pleased to read you have a supportive husband and have been able to make lifestyle changes to help you feel better. I wish you all the best with your rheumatology appointment.

  23. Wow! Such a great way to describe everything! I’m newly diagnosed here in the uk but my husband and I think I have had Fibro for 7.5 years due to a complicated delivery of my son followed by a 2 week stay in Intensive Care! The biggest thing I have had to try and deal with is coming to term with the fact that my body won’t let me do things that I use to do! But I’m not gonna let Fibro rule me! Fatigue is a bitch and my biggest symptom-I get tired of saying “I’m tired” and watching people’s eyes roll at you coz they don’t really understand. I’m gonna check out that book! Gentle hugs everyone and keep fighting!

    • Thank you Rebecca, I am pleased that you think so 🙂 Sorry to here you are newly diagnosed but yes, the journey towards a diagnosis can be a long and hard one. Yes, it is very difficult learning to accept new limitations but your attitude is amazing. Fatigue is my biggest problem too and you most definitely have days where you are sick and tired of being sick and tired. The book has been one of the most helpful things for me and I have made great progress through following Dr. Rawls protocol. If you have any questions, feel free to give me a shout 🙂

  24. Aside from the pain – which is unrelenting my worse symptoms, for me are the overwhelming fatigue – lack of sleep and horrendous noise sensitivity (which I never knew was fibro related) if family – daughters grandchildren etc – are altogether and say the TVs or radio is on I literally can’t cope can’t concentrate and get really irritated. I used to think I was just incredibly bad tempered but now I know noise sensitivity is real I try to avoid certain situations. Thank you for this article. I might just attach it to my FB page and get everyone to read it xx gentle hugs to you all

    • I can relate to the sound sensitivity. Although it has now improved for me, at one point I really struggled with it and went for a long time without really even listening to music (which I love). Sounds caused an increase in all my other symptoms and it was difficult to deal with. It’s good that you have learned how to handle it and I appreciate the need to avoid certain situations. Thank you for sharing on your facebook page, I really appreciate it.

  25. Thank you so much for all of this information! I was diagnosed last year and I am still trying to figure this all out! It has been so frustrating because so many people have made me feel like I am exaggerating my symptoms! There are times being hugged hurts and I am a hugger! I wish more people would read this even if they don’t have fibromyalgia so they can be more understanding!! Again Thank you so much!

    • I’m sorry to hear that you were diagnosed with fibromyalgia too but I’m glad this page has given you some reassurance. I’ve been there too– at one point even my clothes hurt me. It’s a horrible thing. Take care.

      • Thank you Donna! It’s so nice to know I have somewhere to go and have someone understand me!

  26. Hi it seems that all your replies are from women. I assure you i have the same symptoms and have been diagnosed with Fibro 18 months ago. I take progablin twice a day.

    Some times it works and i do not have a lot of pain and sometimes it does not. I am never without pain somewhere and have good days and bad.

    Sleep i can sleep for England and win hands down. I have usually 12 to 14 hours at night and in the afternoon at least 2 to 3 hours more. Not everyday but most.

    It all changes such a lot. I can appear to be right as rain some times and then suddenly become exhausted in a flash. I also have Vertigo so unbalanced when i walk, I have Diabetes, Neuropathy, High blood pressure, and leg cramps. I am a complete walking wreck.

    I am 61 and most days i feel like 90. To explain to some one how i feel is really difficult. My partner of 27 years was a Nurse so he sympathises with me and looks after me 24/7. If i did not have him i just could not cope.

    I have deep depression some times and Flutoxine takes care of that. My partner says when i get depressed go to bed and sleep it off. It kinda works most of the time.

    I hobble about like an old man, but i am still alive. I have a great sense of humour and my mouth always get’s me into trouble, and has done since i was a kid. I sit back and look at the world and i realise there are worst people than myself, but it is hard to get through day to day.


    • Hello Malcolm, you are right. 90% of visitors to my blog are women. However, I am very aware that fibromyalgia does not discriminate and that men suffer from the condition too. One of my fellow fibro bloggers is a man (Gary McArthur), in case you haven’t come across this blog here is a link-

      I think one of the biggest difficulties can be the fluctuations and especially when we can’t figure out the why. It is wonderful that you have such a supportive partner, I know it can be difficult getting others to understand and to be honest I have let go trying as it just causes me unneeded stress. It’s shown me who the most important people in my life are I guess. Know that you are not alone and there are many going through the same. You do not have to justify how you feel to anyone. It is an emotional roller coaster that’s for sure.

      You have a very powerful coping mechanism if you can find the humour– it’s what gets me through too. There will always be someone who has it worse and it’s good to give yourself that reminder. However, that doesn’t invalidate your own struggle. Keep smiling, keep joking and take it day by day. I live my life by setting the intention of doing the things each day that help me to feel as well as possible.

      Take care

  27. OMG! That is me!!! I thought I was just having, oh I don’t know, something weird! In fact, my husband asked me if I had ever been tested for fibromyalgia. I said no, where do I go for that? Go to your Dr. Oh okay. So, I guess I will try to find a Dr who will treat it. Thank you for posting this!

    • Diagnosis can be difficult and take time as it is a diagnosis by exclusion. There are diagnostic criteria but there is no test. If you don’t get taken seriously don’t be afraid to persist or see other doctors. Good luck.

  28. Nicola Slater Reply

    This is absolutely genius. I suffer from every one of the symptoms and have done chronically for 13 years. This literature is the mist comprehensive document Ive ever found. Will be posting to friends and family in the hope they read and finally understand. Thank you. Xx

    • Glad you found this page helpful and I hope it helps your family and friends to better understand too.

  29. Catherine Gooch Reply

    Hi, I was diagnosed in 1997 age 37 but I had suffered from chronic pain since I was 19. I put the start of it down to falling down a concrete staircase at the age of 17. I was medically retired from the N.H.S in 1997 and thought they were being unfair as I thought at the time I could have managed a part time job as an Auxilliary nurse on maternity as apposed to the heavy lifting I had to do on a bust geriatric ward, they said I was a liability and the consultant said that I could end up in a wheelchair as I also had arthritis in my neck and full length of my spine which affected my arms legs everywhere really. Over the years I have had spinal injections of cortisone and manipulation which helps for a few weeks but wears off quickly. Had same inj in my knees. The only one that really worked was an injection I had in my shoulder at a well known hospital called weighting ton which has stopped most of the pain in my arms and hands. On a good note, I have been back in work at a pharmacy 18 months now ( had to as my incapacity money was stopped) we couldn’t manage of one wage, I felt I had to do something! I work two 4hour shifts and one 8 hour day which finishes me off pain wise but I have no choice and I do like the fact that I am now contributing one again. I also enjoy being with people as before I didn’t leave my home much as the years have gone by the fibro seems to get worse. I manage my pain with strong medication and have mess to help me sleep. Also my depression has lifted as my confidence grows, my work colleagues laugh at my clumsiness and forgetfulness but I just say it’s my age and hope I get by another day. Hope this helps some people as I thought I would never work again. Thankyou for your blog it help knowing other people get you totally. X Cathetine Gooch.

    • Hi Catherine,

      That’s really wonderful to hear you are back working again and have found a job that fits in with your needs. Thank you for sharing your story.

  30. Thank you so much,at times I think people including my family think I am a hypochondriac, I have had this for at least 4 years but was only diagnosed in November 2015, I was told on my visit to the hospital back then 2011 that I had a virus, my doctor had said she thought I had rheumatoid arthritis,but was dismissed when they couldn’t find anything,I have an assessment Wednesday to see what treatment I should have,physio etc, I was so relieved when I was diagnosed I think the consultant thought I was mad,but it was a relief to me.last year I was so depressed and really did not want to be here at all. But with a good therapist who convinced me to go back to the doctors I am getting back together,yes I am in so much pain but my head is in a better place to cope with it. Thank you again.

    • I can totally understand that relief Lesley. It’s good to know exactly what you are dealing with. Good to hear you are now in a better place mentally and I wish you all the best.

  31. I’m lucky enough to not suffer from fibro myself, but I have a good friend who does. One thing that strikes me hard, is that with fibro symptoms acting the way they do—causing constant pain—it would be easy to miss diagnosing something else, wouldn’t it? Some kind of pain that isn’t actually caused by fibro? Of course the danger is that this pain might be attributed to fibro when it’s actually not related to it at all. Has anybody (else) experienced this? Is there a way to recognise pain that isn’t fibro, so the cause can be treated?

    • If I am understanding what you mean Jan, then yes I do think sometimes patients/doctors can attribute pain to being fibromyalgia when perhaps it’s not. What I would say is that, as someone with fibromyalgia, I am aware of what is “normal” for me in terms of pain. Chronic pain and acute pain are very different too and feel different. Any new symptoms or type/source of pain should be investigated and other causes ruled out before putting it down to a new fibro symptom.

      • Yes, that is exactly what I meant, Donna. Thanks. I wondered if a new kind of pain (or pain in a new location) would likely be dismissed as probably ‘just fibro’ …by either a doctor or the person with fibromyalgia themselves. So ….someone with fibromyalgia must make sure their symptoms are never dismissed—and their doctors need to take them seriously EVERY TIME.

        • Yes, exactly. I wrote a post about this topic a couple of years ago come to think of it after experiencing new symptoms myself. You can read it here if you are interested 🙂

  32. Joyce Gormley Reply

    Great blog Donna, describes Fibro perfectly! I get my words mixed up a lot, especially at work and always feel like a complete idiot cos it sounds like i can’t talk properly! I’ve recently decided to reduce my hours at work for the sake of my physical and mental health so from 7th March I will be working 3 days a week instead of 5 days. Feel like i have to do this cos my work not happy with my absences and think if i continue to work full time i would end up losing my job altogether. It totally sucks but my health and wellbeing is more important.

    • Thank you Joyce. It’s super easy to muddle up your words isn’t it? Fibro can make us feel like a total pleb at times!! You are much wiser than I was Joyce, I think if going part time enables you to manage your fibro better then that’s something that should be celebrated. It’s all about finding a balance, though I completely understand the frustration and upset that decision can cause. I hope you get on well from March onwards.

  33. This is an amazing comprehensive break down of Fibromyalgia. I’m going to send this to people who ask about it from now on!

  34. I’m deep in the journey to diagnosis and this post just made me want to cry because you’ve just described me. Why does Fibromyalgia have to be a “diagnosis of elimination” if I have EVERY SINGLE SYMPTOM what more do they need?? Right now my life is a revolving door of GP appointments, MRIs, Neurology, Rheumatology, bloods, and prescriptions, and I’m sorry but it sucks! I’m so tired and having to get the energy to go to all of these appointments makes it worse, I struggle through my job (quite physical by the way) and then melt into the couch because I just can’t handle anything else. Just yesterday I added a new round of meds to my already burgeoning pile (viscotears and Lacri-lube) and it’s just made me so angry. I’m sorry for ranting in your comments, it’s just so refreshing to to hear these things from someone who knows as opposed to Drs who seem to have only one facial expression-pity!
    Thank you-and sorry again.

  35. Oh my! I’m almost in tears. Putting our feelings into words can be so therapeutic yet heartwrenching. Thank you for telling our story. The cold sweats and hot flashes! I’m currently going through this. It’s so frustrating.

    • Hi LaQuita. It’s nice to know you can relate to what I write. Cold sweats and hot flashes are the worst! When I get like this, I find epsom salts baths (warm not hot) to be helpful 🙂

  36. I was dianosed with fibromyalgia 2 years ago, and I’m currently experiencing an awful flare-up as I’m in my second month of college. I am now looking endlessly for ways to feel better and I often feel hopeless, like you said, and I just feel like my health is never going to improve, and as an 18 year old, that scares me so much because there is so much I want to do, yet I am afraid I won’t be able to because of fibro. It is relieving to see that I am not alone and there are ways to feel better. I am glad I found your blog whilst roaming pinterest when I should have been doing my homework, lol. Thank you!

    • Hi Kaitlin
      Sorry to hear you have been going through awful flares. You are definitely not alone in how you feel and I hope you can find a lot of helpful information on this blog. Take care.

  37. I am so glad i’ve found your blog. Got my diagnosis of Fibromyalgia and M.E in April of this year and am still trying to come to terms with it.

    • Hi Jodie, sorry to hear you have these diagnoses. I hope you find my blog to be helpful 🙂

  38. Gracias por la información sobre la L-Teanina. Curioso, pero soy adicta al té verde!! Sufro de fibromialgia desde hace más de 20 años, ahora tengo 47, y es desesperante el dolor y lo estúpida que me siento muchas veces.
    A partir de ahora te seguiré.

    • Hola Marga! Yo solo hablo un poco de Español. Lo siento tienes fibromialgia. El té verde contiene l-teanina. No beba demasiado debido a la cafeína. Demasiada cafeína puede interrumpir el sueño. Gracias por seguirme. Espero que encuentres mi escritura útil.Deseándote lo mejor

  39. Admittedly, the symptom that frustrates me most is the sleep issues. I figure, if I could just get the sleep I need, then the rest would fall into place because the body could do a better job at healing itself.

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