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
You have described my life in a nutshell! Thank you & I shall share this with all the non-believers in my life.
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We need to raise awareness about fibromyalgia xx
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I think the doctors that we see should have better awareness, of this condition, and be more sympathetic to people with this condition, whenever I mention fibromyalgia, to my doctors they just don’t help at all, most of the time they ignore the subject, with oh well you just have to live with it, not helpful at all.
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The younger doctors are more up to date and have a different outlook in my experience. Gentle hug xx
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I suffer from fibromayalgia as well, you explained the type of pain I go through very well. I am sick of trying to explain myself yo others as they have no clues how we are affected by this. Thanks for this, keep up the good work.
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Thanks Yasemin. Gentle hugs xx
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This is the first time I have seen all my symptoms in one place, at the moment its the itching tingling and wake up pain that get me. I have tried so many mattresses, I now take diazapan in the middle of the night which helps slightly with the pain I know will wake me, thats after the morphine before I go to sleep and all the other drugs, Oh and the allergic reaction to insulin at the moment, but it can be strawberries when it wants, or butter, then I can eat them with no reaction at all. So thank you, am sharing
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It is a debilitating condition and we need to spread awareness. Gentle hugs Gaynor xx
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I’m so sorry that you suffer of Fibromayalgia. I haven’t heard of this before but now I’m glad I know and will share this post. You are a strong and brave woman!! Thanks for sharing, x
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Thanks for stopping by :) xx
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Good you are raising awareness. A lot needs to be said. Great post.
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Thank you xx
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Invisable disabilities are awful. People are so quick to judge (and always negatively). I have Crohns Disease and some of the symptoms are similar. I also feel The Fatigue as I call it. The worst thing about my Crohns is I get seconds warning to find a toilet so I have a RADAR key to use disabled facilities. An old woman once stopped me on the way to the toilet to tell me I shouldn’t be using it! Wish I’d pooed on her.
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Thanks for stopping by. I have a RADAR key too xx
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This is such a great post. I learned quote a bit!
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Great :) xx
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Interesting. Thanks for sharing!
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I have POTS so can relate in so many ways. I am also waiting for a possible fibro diagnosis as I suffer with many of the same symptoms and pain.
Thank you for sharing this. Sending spoons your way xo
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Thanks for the spoons :) Gentle hug xx
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Very well put this encompasses my life and I can attest to most if not all of the contents written…
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Thank you xx
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Thankyou for sharing your life with us..
ive fibro and although medicated with western medicine i still suffet..ive started my own holistic therapy business to help people like us…i find reiki is great for pain..as a qualified aromatherapist gentle body massage and ive developed a cream for pain..my customers swear by it…
also refexology works einders for psin and tight muscles… i continue to searchfor support for this cruel illness….hugz n love..im on facebook julie clive if anyone needs to connect..x
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Thanks for your lovely comments. Gentle hug xx
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I to have fibro I have had it for about 15 years,when I mention the pain I’m in people look at me as tho I am putting it on, and the doctor says sorry there is nothing he can do.I also have colitis.
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Thanks for such a great awareness, it is helpful for so many ppl i know that shares the same trauma. God bless !! Keep up the good work :)
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Thank you :) xx
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Very informative post!!
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Thanks :) x
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great description of our daily fight, I hope you dont mind if I steal it and post in on fb, one bit per day over this week to keep it up there. had a great time when i was off with depression and then the summer hols rediscovered my love of baking but now back to work too knackered to do it, but I am determined to make something each week, I love your blogs so positive. have a spoon from me xx
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Please share and raise awareness. Thanks for the spoon, I think I need any extra today lol. Gentle hugs xx
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These symptoms are so hard to live with everyday. I will share with my community.
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Thanks xx
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You have described perfectly how I am feeling today, I wish people who know a sufferer would read up about it so they can understand why we show a healthy front, but the turmoil that’s going on inside.
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I’m trying to raise awareness of fibromyalgia through my blog. It is so misunderstood, not only by older doctors but family and friends too. Sending you some spoons xx
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I suffer with all of those symptoms and more due to hypermobilty syndrome too. I can’t remember a day when I’ve not had one or more of those symptoms, we learn so well to adapt as we have no alternative. I hope this week awareness is increased all round as its so misunderstood as we don’t look sick. Thank you x
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Sending you extra spoons Janet. Share this blog and hopefully more people will understand xx
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Beautifully put claire I will share too and do a piece on my blog and facebook to raise awareness this week too :) xx
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Fantastic :) xx
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Hi Claire previous comment I wrote as my daughters Blog (smileyelliesdiary) didn’t realise she was still logged in thought it was my account :/ Been a bad day today. xx
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Easy mistake to make :) x
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Your describing my every day…been 3 years so far and still getting a diagnosis..i am now finally awaiting an appointment with a nurologist specializing in Fibromialgia.
But its been hell getting this far….
Pain killers are all i have and they do little to nothing..
Thankyou for sharing your story….im thankful im not going mad..and its not in my own head..
Certainly going to share
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You are not alone! Gentle hug xx
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I have fibromyalgia, crohns , diabetes and arthritis ,I hurt all the time don’t like to take more meds. Don’t know what other reactions I might have. My daughter’s have also been diagnosed with fibromyalgia .They also have a lot of pain. My oldest daughter uses a electric wheel chair on bad days.
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It can be hereditary. We need to raise awareness, more money needs to be spent to find a cure or to ease our painful symptoms xx
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I have had Fibro for 27 years now and it just gets worse year after year. This website has been fantastic on explaining a lot about symptoms I have but didn’t they were linked to my Fibro. Thank you so much you are a god send.
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Awww thank you :) You are not alone xx
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Great awareness piece! Thank you for sharing it.
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Thanks for your lovely comment :) xx
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I to suffer from fibromyalgia. Some people don’t understand what it is. My place of work especially my boss can’t seem to get that I look fine but feel so poorly sometimes I just wish people (some people) would take time to understand as it is a hard disability to have as it is.💜
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It is difficult for non fibro people to understand, that’s why we need to raise awareness. Perhaps send your boss a link to this blog or print off some information for him/her. Only fellow fibro warriors really understand the excruciating pain we endure on a daily basis. Gentle hugs xx
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Thank you for writing this. I have read symptom lists for Fibro, but it is so different to hear what it is like first hand. I had no idea of the amount of pain that can be associated with it.
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Thanks for stopping by and reading my blog :) xx
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You have nailed it Claire! Thank you for this wonderful explanation. Hopefully we can raise awareness, especially in the medical field.
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Thank you Ruth :) I will continue to do my part to raise awareness and hopefully more people will understand what we live with xx
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Another symptom…..issues with teeth. Those with fibro tend to be in so much pain that they unknowingly grit or grind their teeth. This leads to cracked teeth, broken teeth, and holes that allow for decay. I ‘m having another root canal next week due to the damage I’ve done to my own teeth.
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The symptom lists gets longer!l I tend to grind my teeth when I’m in pain too. Gentle hugs xx
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Reblogged this on Thoughts, Opinions, and Everything In Between and commented:
Whatever my problems end up being, I can relate.
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Thank you so much :) xx
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Gentle hugs xx
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My son has this condition and your right we nonsufferes don’t fully understand the pain that your in we tend to say yes well we have pain and we are tired as well but reading your blog has given ne a bit of insight in to his confition I will definitely be much more understanding in the future its true what you say we tend to say well you seem to get around ok and assume he’s not as bad as he says so thanks for putting me straight
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Thanks for taking the time to read my blog and comment. Your son will certainly appreciate your understanding. Sometimes we smile through the pain, it’s just another of our coping mechanisms xx
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i am a male and recently been diagnosed. from what i am told its not so common in men. the biggest thing i find is that people think im faking. they have no idea what ts like and your blog hourjust summed up exactly how i feel
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People don’t understand how a person can endure so much pain every day and that it will last forever unfortunately. We definitely need to raise awareness and increase understanding. More money should be given for further research into this condition. Gentle hugs xx
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I’m in the struggle as well. Always, but praying not forever.
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Keep smiling Sharon, hopefully they will find a cure xx
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Gosh, it sounds absolutely awful. I didn’t realise how many different symptoms of Fibromyalgia there are. I hope the government and NHS can give it the attention it deserves x
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Thanks for your comments and support :) xx
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That’s a really informative and well written post. I may have to look into that as I have quite a few of the symptoms and thought I was just falling apart after having babies.
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Thank you! Get yourself to the doctor and get checked out. Read up on Fibromyalgia. Hopefully you don’t have it xx
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Amazing post, recently diagnosed and sums up life completely. My mum has had it for the past 10 years so i know just had bad things can get. The lack of understanding from people without the condition can make things worse sometimes so we need as much awareness as possible :) well done on such a fab post!
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Thank you, such lovely comments. It is people like you that keep me motivated :) Sending you extra spoons xx
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As a graduating medical student, I’m glad to see people are blogging about their illnesses. I promise you fibromylagia is definitely talked about in our curriculum. However, the treatment options are definitely limited, and it is a validated medical condition. hopefully with time, research and better understanding will help patients cope. It’s tough because it’s mental and physical but hang in there!
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I LOVE this response Natalie :) And I’m so happy to know that it is on your curriculum. Thank you xx
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Think I need to go see my Docter as the way you have described your illness is as if you have described how a feel on a daily basis it’s my back and knee that is worse but I get sever pain in the tops of my arms and no mater were any one touches me it’s sore ty for posting this more people will benefit from such a good thing you are doing ty
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Definitely get checked out by your doctor. I’m hoping you don’t have fibro xx
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This is great, all my symtoms together.i don’t look sick but I understand what is going on inside me.thanks xx
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Thanks for your kind comment :) xx
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Hi I Mary I have all the same issues and had my Gallbladder taken out as well i hurt all the time and have the stomach woo,s neck pain shoulder pain and back pain and my head hurts and for get a lot of things as well this is my new life since october of 2010
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It can be so painful! Sending you an understanding hug xx
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I have never hear of that so it was very interesting read!
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I’ve never hear of fibromyalgia & the symptoms really surprised me, I can’t imagine what it must be like to have this condition – thank you for raising awareness.
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Interesting to read everyone’s comments..
I’ve had Fibromyalgia for a long time I think, but only recently diagnosed by my GP, I’m finding it unbareable at times, the pain is so bad and all over shoulders, legs, feet, knees etc.. And sleep is another problem.
I agree that holistic therapies help, I’ve been having massages to hep relax the muscles and it stops the burning ache for a while, but these cost a lot of money, and at the moment I’m not allowed to claim any benefits, and I am not fit enough to work. So with no income except for my husbands, trying to cover all the bills, mortgage and food, it’s very difficult to find any spare for a £20 massage, even though it’s the one thing I know that does work.
It’s a shame we can’t start a club to find these therapies for free somewhere, as they are really good and beats taking more and more medication!
Hoping everyone is having a painless weekend. xx
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Perhaps asking at your local college? They might have trainees learning how to massage? Just a thought xx
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I don’t know a lot about the illness but I do know a lot of people who suffer from it especially from the blogging community and quite a few have had a fight on their hands when it comes to being diagnosed which is terrible.
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That’s why we need to raise awareness and try and persuade the government and health department to give more money for research and care xx
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I know way to much about Fibro :( it is such a horrid illness and why that so many poo poo at just being in the mind (yeah right you try living with it for a day to those people) I hope one day more people at least try and understand what life is like on a daily basis for us. x
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Hopefully Sarah :) I wouldn’t wish it on my worst enemy xx
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Your posts are so positive Claire and I know life is not easy but that one attitude ,being positive can make such a difference ! We are all together with you x
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Thank you Anushree, what a lovely comment :) xx
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I don’t have Fibro but I have Rheumatoid Arthritis which is an invisible illness very similar to fibro. I can relate to everything you have said. It’s not easy to live with something like this every day but you have to keep smiling and believe in yourself, hopefully one day it will get better :)
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Hopefully they will find a cure x
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I knew of this, but not the ins and outs – so thank you for sharing this. It is such a great thing to raise awareness so that more support can be given to sufferers
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Thank you x
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This is a condition I had only heard of recently when someone suggested I might be suffering from it. Although I do have quite a few of the symptoms, I just sort of keep going. More needs to be done to raise awareness for sure x
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I must admit, I didn’t know what fibromyalgia was until I read your post. Thank you for helping me to understand and for raising awareness… you are truly inspirational Claire :)
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Thank you :) x
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This is a great post thank you – I didn’t know anything about Fibromyalgia before so this is really useful
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Thanks x
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You have described me as well as your self most people just don’t get the understanding of this disease that does exist & controls our everyday life style. We’re not lazy or quitting on ourselves so people & Dr’s don’t give up on us.I’m copying this to my fb page.
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