Things People with Fibromyalgia Want you to Know
Fibromyalgia is both a common pain disorder and one that is commonly is misunderstood.
If I had a pound for all the times I was told to just exercise and I’ll be better, or to snap out of it, I would probably be a rich person.
So to try and dispell a few myths here are a few things, both I and other people with Fibromyalgia want you to know.
Things I want you to know about Fibromyalgia
Hug Me – But Not Too Hard.
I still want the hugs I used to have, but please my skin hurts, so just be a little more gentle.
Yes, I Spend a Lot of Time in my PJs.
But they are comfortable! They don’t feel like they are about to cut me in half like “normal” clothing does. However, don’t worry I have a different pair for day and night.
Don’t Make Me Feel Bad For Cancelling Or Leaving Early.
I already feel bad enough about it.
I Never Know How I Will Feel Tomorrow.
I can go to bed feeling OK and wake up feeling like I’ve done 10 rounds in a boxing ring, I hate it.
Yes, I Slept For 12 Hours, Yes I Still Feel Fatigued.
It annoyed me as much as you, WHY DOES THIS HAPPEN TO ME!!
I Can Be Quiet When I’m Having A Flare.
But please do check on me, I may be a while answering, or just grunt back at you, but it means the world.
Bright Lights, Loud Noises, Overly Powerful Scents Can All Set Me Off.
They overload my senses. For instance, the reverberations from loud noises can make me panic and feel ill.
Yes My Face Is Swollen.
As are my hands, wrists, legs, ankles, basically most places.
There is Never a Pain-Free Day.
A “good” day means I can deal with the pain better.
Yes, I was too Hot and Yes Now I am too Cold.
My body can’t regulate its temperature properly I go one way and keep on going till I bounce back the other.
Other Fibromyalgia suffers say:
Don’t touch me! The amount of times colleagues pat me on the back or nudge me playfully as they walk past is unreal. What might be a playful tap to them feels like a sledgehammer, or knife to me. So no I’m not overreacting, just don’t touch me!
and
“Oh what have you done to yourself?” When I’m using my stick! I haven’t DONE anything, even if I had it would be nunyabusiness!
– Amanda-Jaied Love and OAS
I’m not too young to have pain,
Its real, and it doesn’t come and go I have it ALL the time! (based on the fact someone once said to me “but you don’t have fibro all the time” LOL.
It’s not fun not being able to live a normal life, but it’s my life and let me live it the way I see fit!
– Rebecca Once Upon a Fibro Time
As much as I appreciate people wanting to help it really isn’t as helpful as you think to tell me that your husband’s sister’s Mum is totally cured by… (insert random diet, health fad or bizarre exercise regime) and hearing that you know someone with fibro so mild that they live a totally normal life is lovely, for them, but sadly isn’t my reality.
– Laura Petit Moi – Big World
That losing weight or thinking positively is not a solution….whilst losing 10 stone did improve my fibromyalgia a bit it did not get rid of it completely and no amount of counselling has made it go away and it never will!
– Jen Just Average Jen
So there are a few things I and others want you to know about having Fibromyalgia, did anything on the list surprise you?
This is a collaborative post.
Fancy checking out another post? Just click here!
Pin it!
[bctt tweet=”What people with Fibromyalgia want you to know: ” username=”Life_BreakDown”]
mt eldest daughter has fibro so i can relate to this big time, shes been unable to get out of bed for the last few days with a bad flare up , and this heat doesnt help
Oh bless her – I hope things get better for her soon, I’m really struggling with this weather as well I have to admit.
I too have Fibromyalgia, Lupus and Antiphospholipid syndrome which basically makes it ramp up my symptoms a thousand fold. I hear you and everyone else, I know it and I feel it. My love is sent with gentle hugs and much healing energy. I have no hints or tips, I just take each day as it comes. I have just spent two days asleep which happens a lot. The fatigue is as debilitating as the pain. There are no answers, but I keep hoping one day there will be xxx
Sending you gentle hugs back. Thank you so much for your comment, I’m going through a pretty rough patch at the moment (lots more tests) and it just made me smile, not that your going through the same, but that someone understands xxx
Thank you so much. I am intrigued that you suffer, like me, from Dyslexia as well as Fibromyalgia – do you think there is a connection? The medical folk here in the UK often treat me as having 4 or 5 independent base problems (not that dyslexia is a medical problem, in fact I believe it is a blessing in many ways} but I don’t think it’s credible they are not interrelated somehow. There are a lot of clinical reports that link Fibromyalgia with severe sleep Apnoea, that I have, and there is a known link between poor sleep and low mood, Although we have a predisposition towards Osteo Arthritis in our family, my OA actually started in my knees whilst cycling and running to try to loose weight as I was being hassled by the sleep apnoea clinic (and my wife!). Do you think there might be a relationship between Dyslexia and Fibromyalgia? (for me there were 50 years or so between showing signs of Dyslexia and first signs of Fibromyalgia)
I’m not sure to be honest I’ve never thought about there being a link between the two. I know Fibro may run my family, I know my birth mother and she has recently been diagnosed with it as well. I think mine might be linked to trauma as well which then set it off. I’m trying to get set back to a rheumatologist at the moment but it is a hard old slog.
I absolutely agree! That is exactly what I want to tell my coworkers. One of my students patted me on the arm recently, and I instinctively pulled away. She was so confused, so I had to explain to her. I gave her the short version, “I don’t like people touching me.” That was so hard for me to say because, really, I love hugs, I love pats on the back, but, randomly, they will hurt. I can’t predict it. I can’t stop it.
It is horrid isn’t it – I remember before I was diagnosed being so confused about how the smallest touch in the wrong place could hurt so much.
You nailed it. I think slowly more, and more people are starting to hear about Fibromyalgia and trying to understand it. I can understand the lack of knowledge though. When I first began having the symptoms, before even the official diagnosis, there was only one person I knew who had even heard of it. I’ll be honest if I did not live with the condition I would struggle to understand it too! x
It is hard isn’t it – I couldn’t imagine it if I didn’t have it – but I think it’s similar with a lot of issues.
Thank you for this post I enjoyed reading it. I was diagnosed with Fibro and Arthalgia 6 years ago and seems to be getting worse. Lost all but one friend through this awful illness due to having to let people down at the last minute as I couldn’t move due to the pain. One so called friend of 25 years had a slanging match with me at work in the middle of the office saying I was an awful friend as I was always letting them down, we didnt speak again for 4 years. I had just got back from sick leave as well. Work now lets me work from home but due to other illnesses just started trying for ill health retirement. People dont understand this really even when you try and explain. I say its like having permanent flu where you cant move crossed with severe sunburn every day. The fibro fog is another thing sometimes getting letters and words mixed up when I speak . Take care and gentle hugs x
It is awful isn’t it 🙁 People just don’t get that you would love to go out and about but you just can’t a lot of the time and then if you can you need to factor in the fact you will likely be out of the count for god knows how long after! Take care and gentle hugs back.
Really useful post – have a colleague who has Fibro, so am bookmarking this
Aw thank you – I am glad you have found it useful!
Sorry that this is long. I’m pretty much at my breaking point.
For a few years I have suspected I may be suffering from fibromyalgia. I have been having flare ups of pain that would last for weeks, or even a few months. These flare ups are happening more frequently and are lasting for longer periods of time.
For the past 2 weeks I’ve been traveling. I’ve had about 2 days where for a brief period of time I had almost no pain. My family keeps insisting that I just need to make myself be more active. Yeah, right. ?
I am tired the majority of the time. I’d much rather be home laying in my bed in my pajamas using my elevated wedge pillow. I can read, I can do genealogy research, I can connect to my work computer. I can do the same things laying in my bed being more comfortable, then going into the other room and sitting in front of my desktop having my pain get considerably worse with each minute I sit there. My family thinks I am wasting my life, just being lazy, are concerned that my grandchildren think of me as the grandma who is always in bed when they visit (I’m setting a poor example). Their lack of empathy and understanding is so disheartening.
If I am sitting upright or standing for long periods of time I hardly have the strength to simply start walking. It is a struggle to get in and out of the car, or trying to stand after sitting for longer than 5-10 minutes, or to start walking after standing for 5-10 minutes. My legs and knees ache so badly that almost all the time now it is becoming more of a challenge to just start walk walking.
It is very difficult when I encounter steps. I literally have to pull myself up using a handrail (or a cane/walking stick) when having to step up with my slightly stronger right leg. Lately it had been more of a struggle to lift my left leg onto the step.
The wierdist part is that once I am able to get past the minute or two of difficult walking, I can do ballroom dancing fairly well!! I drive to my lesson, I struggle to get out of the car, I struggle to walk into the studio. I sit down, put on my dance shoes, stand up for a bit until I can start walking, and then I can do a waltz, foxtrot, rumba and other dances almost pain free.
So how do I find out if I have fibromyalgia or not? I really don’t want to go through rounds and rounds of different doctors. I realize that it is a matter of ruling things out. But is there one specific type of doctor that could help with a diagnose, and managing whatever is going on? A rheumatologist, a neurologist, pain management doctors, or some other type of physician?
I’m almost 65, and my mother is almost 85. My mother gets stiff after periods of inactivity. However, she doesn’t have pain like I do. I’m having a hard time thinking about the possibility of living 20 more years with these cycles of pain.
Thanks for reading my post. I welcome any suggestions, comments, etc.
Sadly there is no quick way to diagnose fibromyalgia, it is more a diagnosis of ruling everything else out. A rheumatologist is who does the diagnosis in the end, or who did for me, I think sometimes GPs will but that’s more rare. If you are worried it is definitely worth talking to your GP about what you feel maybe wrong. They can at the very least run some blood tests to check what is going on in some ways.
This article is very helpful to me, as my mother is suffering form Fibromyalgia. Your writing helps me for better understanding of pain suffered by Fibromyalgia patients.
I am so pleased it has helped. Thank you for trying to understand as best you can.
thank-you. My friend has fibro, but now I feel I understand her situation a bit more.
I am glad it has helped you understand it just a little more.
I have one major problem with my doctor who even though I was diagnosed at the hospital, does not believe its an actual disease.
That is absolutely crazy! How can they think like that.
Thank you for sharing this on here i have Fibro and i am also type 1 Diabetic with nerve
pain all the above is true its so hard for people to understand and even harder to find a good GP to understand thamk you again xx
It really is so hard unless you are there and doctors can make it so much harder as they seem to not understand although it is part of their job.
Absolutely wonderful post and every word is true. Fibromyalgia is one of the hardest conditions to learn to manage and is life changing. I lost many friends through it and still find it hard to this day to keep going. You are incredible! Xxx
Aww thank you – I am so pleased it is resonating with people who are suffering as well. I can’t believe the response.
I have friends and family who suffer from fibromyalgia, excruciating pain, life limiting and depressing. My mum misses out on quite abit with the grandkids because its too painful to join in
my niece has this, alot of people don’t understand
It is sad that so many people seem to think they can click their fingers and all is OK.
I admit I never knew much about Fibromyalgia and have learned so much from reading this.
I am glad it is has helped you learn a little more about Fibromyalgia.
So commendable of you to come out with a candid post about fibromyalgia. There is a general lack of awareness of the condition and hence this brings in a fresh perspective.
Thank you so much, I hope it helps someone understand it just a little more.
This is such a great post. It can be hard for people to understand when an illness isn’t immediately visible. Thanks for educating us!
It is horrible that it gives you so much pain and it makes me angry that some people judge without knowing the full story. I hope that your post educates them and shows that it is not something that goes away but is something that you have for life x
Hopefully it will help some people understand more, I think for some they really don’t know until they have it themselves but if it can help one person in some way it is worth having written it.
These are all so true! I have been dealing with Fibro since I was a senior in high school, although no one diagnosed me with it since in 2003 it was not really a thing doctors watched out for. When I had kids my Fibro became pretty unbearable for a while, but I still somehow keep going, leaving me exhausted to the point of barely being able to talk. It is a daily struggle and so hard for others to understand. Knowing there are others and I am not going crazy is a comfort.
It is so nice to know you aren’t alone isn’t it – though I sometimes feel bad for feeling that as it means people are going through the same thing.
I have an aunt and cousin who both have Fibromyalgia. It’s very difficult to make sure they feel understood, especially because they seem to have flareups at most family events. This is great info, thanks for breaking it down.
I always get a flareup at events, I think it’s the getting reading and sorted and trying to make sure your feeling fit enough and socialising IS tiring for anyone.
Great article! I have fibro and its a blumming daily struggle! Its hard having a invisible disability
It really is isn’t it – I can understand why people don’t understand but its when they don’t even try it can get so hard.
This sounds like my mummy at the moment. A good day for her means she can deal with the pain better. I can’t remember the last day she wasn’t in pain 🙁 Chronic pain and fatigue can really get you down. This is great to raise awareness for non-fibromyalgia sufferers x
Aw that’s not good at all 🙁 I hope she gets some relief from it all soon.
Oh my gosh! For me, it was Lyme (although I was initially misdiagnosed as having Fibro) but I can relate to this all SO much! I lost so many friends when I got sick as some took it personally when I wasn’t well enough to do things with them, and other’s thought a few harsh words would ‘snap me out of it’. Even my GP looked me in the eye once and snapped ‘your life is pointless!’..which hurt me more than anything. There seems to be such a widespread lack of understanding and compassion for those who are suffering from chronic illnesses. I hope with more awareness and wonderful posts like this though, that will eventually change <3 xxx
Oh gosh that is awful of your doctor to say that! Mine has told me to exercise more, hey if only lol.
i love this post and i will be sharing on my business fb page later xx
Thank you so much, that is so kind of you.
I would just like to say if you have a friend with fibro don’t forget him/her , fibromyalgia is a lonley illness,it makes you feel isolated and it’s awfull
This is so true – it really can leave you feeling alone as you just never know when your be OK to do anything.
I can’t imagine the body pain you were going through it wasn’t pleasant at all. I’m in mid 30’s ones in a while I experience back and leg pain.
I don’t really remember anything different these days, I just look forward to the days when it isn’t quite so bad.
This is extremely informative, I don’t personally know anyone but this is great in the future. Thank you so much for sharing all of this information.
This must be such a hard condition to live with and I’ve learnt a lot about the conduit from your post. I’m the same as I have type 1 diabetes. So many people misunderstand that x
It is sad that so many things are still misunderstood though there is a wealth of knowledge out there.
This is such a misunderstood condition so thank you for sharing this information!
Thank you for sharing this post. A lot of people are not aware of what a person with fibromyalgia goes through every single day. It is a horrible experience to be in constant pain.
I have a friend who has this and I never knew that it was so horrible. I think she puts on a brave face. I can’t imagine dealing with this.
I think most us do it’s easier that way sometimes than to try and explain.
Thank you for your honest and heartfelt article. I do not know anyone with fibromyalgia right now, but this is making me feel more prepared for helping support any friend with an illness.
Can relate so much to touching hurting skin as well as wanting to just wear pj’s for comfort. I have to be very careful when buying new bedclothes as this is something which can cause me a great deal of discomfort.
It is crazy how much things can hurt you isn’t it. 🙁
hubby has this crippling disease ,it diesnt just turn the person who has it upside down but the family too
It affects everyone in the family as it is hard to plan ahead. Sufferers have to just take each day as it comes and this takes its toll on family life.
It really does affect everyone doesn’t it – it so evil 🙁
This is a great, informative article. I had never heard of this until I met someone last year who suffered with it for many years, but no longer does.
Have never heard of anyone recovering from fibromyalgia before. Were there any significant factors contributing to this?
I have to admit I’ve never heard of anyone getting over it, normally it either stays as it is or gets progressively worse. How did they get better I’d love to hear more.
I am getting tested for fibro soon, I have had a lot of the symptoms, I hope you can find some comfort and this is some great advice, especially for people who don’t know what fibromyalgia sufferers go through.
Good luck with your testing it is a hard and long process, but I found it good to know what was wrong in the end.
Ugh. I sometimes feel as though I have mild symptoms of fibromyalgia – but then I remind myself I actually have a whole host of OTHER health conditions and the symptoms just overlap! My heart goes out to you though because just like my complications – there is no real CURE – just pure strength and willpower!
Sending you big hugs – there are so many symptoms that overlap between illnesses and I feel for anyone who has to suffer anything health wise 🙁 x
I had a co-worker with fibromyalgia and there were days she couldn’t get out of bed due to her pain. She really gave a lot of us a deeper insight into the disease and the pain associated with it. Sharing your post with a few of my friends so they too will have a better understanding.
Thank you for looking to understand it with her, so many people just don’t even try. x
I must admit I did not know much about Fibromyalgia so this post was very informational for me and I have actually learnt something today.
I am glad it has helped you learn a little more about fibro.
I have a friend with fibromyalgia and I feel so bad for her. It’s really a painful thing to have. I’m going to send her your link so she can see she’s not the only one that spends a lot of time in her jammies.
Yes please do she is most definitely not alone 🙂 x
I really don’t know that much about it, so thank you for explaining it a little more. A good friend of mine has recently been diagnosed, so this is a very timely post for me. I hope they find something to cure it one day soon, it must be so hard for you. x
I am glad it came at a good time for you, I do hope they work out something that will help it one day.
Interesting reads. I am still learning about fibromyalgia. I appreciate this inside look to help me better understand the disease.
This is a disease that most people don’t understand. Not something people can see. Have a friend who has this and it is one day at a time.
I think so many people find it hard to understand anything they can’t see.
I know a few people that have fibromyalgia. I think many people don’t understand illnesses they can’t see and are therefore skeptical about them.
I totally agree and I think it is such a shame 🙁 after all we can’t see most illnesses.
I think people are skeptical about Fibromyalgia, even doctors.
I will keep this in mind for sure. I’m not sure if anyone I know has fibromyalgia, but if they did, I’d certainly be understanding about it.
I had heard of fibromyalgia, but I didn’t really know what it was. It sounds like a pretty crappy disease 🙁
It really is – Lady Gaga has just come and said she has it, so I think it will be in the news a lot for a while.
I don’t have Fibro (I don’t think) but this made an interesting read and some of my symptoms are explained above.
It’s made me consider this as something to mention when I get to the hospital and would explain a hell of a lot.
Fiona xx
Always worth saying about, it is one of those issues that is hard to diagnose, it’s more a process of elimination.
So many prople mis understand this
It can be so crippling and lead to social isolation
Great post to spread awareness
It really is so misunderstood, it is a shame.