Hi all, how do you explain Fibro to someone who simply doesn’t ever seem to understand how this condition affects you?
How it makes you feel. I know it’s hidden and there is nothing to see. But l get so dispirited when l say l am in pain and those around simply say, oh why’s that then? Surely after years of seeing me struggle from day to day, they ought to know why l am tired, hurting, or am l expecting to much?
Is there a book or another medium you have found that would help those around me to understand please
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Hello, I am roughly the same age group as you so not only we are middle age with other things going on with our bodies we have the fibro on top, I’ve got so I keep a small circle of friends now , kept the girls who truly get it and empathetic and shut the door on the ones I really didn’t need in my life as I didn’t need the comments , I’ve made it clear now with family that I take it day too day , some you wake up and it’s an okay day , others you wake up and you have no energy too mix and there fore I need personal space . Not threw choice did we ask for this Condition did we🙁it’s okay too not answer your phone /frontdoor or answer a txt there s always tomorrow. I have asked my very nearest and dearest too have alittle read on the Condition itself (I have CFS as well)takes awhile but I’m finding now family etc have got the message . It does not have too be every day or even a week but I find coming on the forum and having a chat gives me more comfort just chatting too others in the same boat, take care x
Hi there are articles on the Fibromyalgia UK website which may help, There's some interesting advice and explanations on VeryWell health which may help. verywellhealth.com/fibromya...
Google and have a look at fibromyalgia letter to the well, also the spoon theory. I have found both to be helpful.
To be honest why should people understand invisible illnesses. I don’t confess to know much about other illnesses and if you haven’t got it, it’s not easy to understand what others are going through. It’s a constant battle explaining and I can easy understand why people think we exaggerate, as one day we are able to do something for a while and the next we are in agony and struggling to move.
Fibro doesn’t make sense to us and we have it, so for others it must be nigh on impossible.
Really and turthly if you have known these people a long time by now they should understand what you go through and how fibro effects you 🤷♀️!! To be honest I've stopped explaining to people if they really care they would do some research or at least read up on it! Its hard but you need to be around supportive people anything other is just stress and upset and that's the worst thing for fibro!! Think how you would treat a friend or family member with fibro then expect that for yourself huni 💪🥰
explaining the condition to people I have found the best way of doing it is by saying:
Fibromyalgia happens when a big trauma happens to you either physical or psychological, and your brain can’t cope with it so it shuts down but when it switches back on its faulty. It malfunctions. The nervous system controls everything in your body, right down to your toes. So you brains is sending out all the wrong signals which you have no control over and unfortunately it’s irreversible. People may not understand because there’s no specific blood test but we all don’t understand it either. So we just have to adapt and pace ourselves.
Some really good advice there...I will definitely use some of those lines to help me explain to even my nearest+dearest who think I'll be feeling better by the wkend!!!
My husband often gives me 'advice'. The latest one was maybe you feel bad because you ate too much too late. Sometimes I don't know whether to be angry or just laugh at him. My response to his advice: Really? So, let me get this straight. Your newest theory is, based on a few evenings of seeing or hearing me getting something from the kitchen at a late hour, is that all I have to do to be well is to not eat late. Even though I have had fibromyalgia for years and have not consistently eaten at a late hour over anything like a statistically significant period of time during our marriage (since 1993). Grounds for divorce? Answers on a postcard. xxx
When my brother asked me for some fibromyalgia information, I told him about the NHS Fibromyalgia website that my GP told me to read when I was first diagnosed.
First let me say I’m sorry you’re suffering from Fibromyalgia/FM.
I can remember when I was first diagnosed and how many times others were clueless about this condition.
The best way I’ve found to explain it so a non sufferer would somewhat relate is to tell them it’s like having a very serious case of the flu…but it worsens over time and because it’s incurable it robs you of living a normal life and your energy. It controls your body dictating what you can/can’t do. You are in constant pain, aching all over weak exhausted limiting your functioning and interfering with your sleep The weather plays a part by triggering symptoms The worst part is it never goes away…
The NHS do a booklet which should be given to you when you are diagnosed. Although, I wasn't given it, but when I went to the pain clinic and told them they I still didn't really understand it all, they gave me the booklet and told me I should have been given it. Anyway, it's simple to read and has a section for family too. It's an easy read so ask your GP or the pain clinic if you go, or look online to see if there is a way to order one. I have found that's the best piece of information that I've been given to help others understand. Don't get me wrong though, still there are some of my family who don't understand and still question why I'm in pain and it's so frustrating 😕 So I understand where you are coming from. Good luck xx
I have never felt the need to explain my health issues with anyone other than my closest family.
If anyone shows genuine interest then I usually describe my day to day pains as the same as flu, without the cold symptoms. If they say "Oh that's not so bad" then my response is that they've never actually had real flu.
I describe my flare ups like this. "Imagine you are holding your hand over a candle and you can't move it when it starts hurting...Now imagine that is happening all over your body and you are in agony but you can't walk away from it. That's (my) Fibromyalgia but I don't know why it is happening.
I don't understand why it is happening so I can't explain the reasons to someone who hasn't experienced it.
If I just want to invoke sympathy I will show them the big scar down the middle of my chest where I had my failed heart op.
Everybody understands that even though the Fibromyalgia affects me more on a day to day basis.
I will post the second part on another reply as it’s too long to post on one.
Dear Concerned,
You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.
After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.
To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.
Here’s what you need to know…
Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.
Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.
Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.
#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.
We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.
The most dominant symptoms that we do share, however, are:
Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)
Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)
Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)
Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.
There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.
While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day to day and while sometimes I feel some more than others, they’re all usually lurking under the surface.
I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.
Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.
#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:
A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),
A family history of immune system dysfunction and/or allergies.
Infection(s).
A traumatic physical event or injury (includes surgeries).
A traumatic stressful/emotional event.
Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).
Environmental exposures to toxins (both internal and external).
Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.
Dental issues.
Also, any number of the above factors can lead to:
Whole body inflammation.
Chronic yeast and candida issues.
Compromised adrenal, thyroid, and hormone regulation.
These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.
#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.
But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.
I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.
#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vise.
Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.
I’m not trying to be difficult.
I’m simply trying to share my feelings and experiences.
And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.
It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.
It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.
#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.
Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.
While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.
Which is exactly what I’m doing now.
I’m learning as I go.
One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:
Please don’t ….
Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
Tell me how I should feel. That’s up to me.
Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.
Please do ….
Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.
In summary:
Remember that my body may bruise like a tender peach, but my will is strong as iron.
What I’m really trying to say is that inside, I’m still the same me.
I’m just trying to find my way as best I can.
I’d love it if you’d come along with me on this unpredictable journey.
Not behind me pushing,
Not in front of me pulling,
But beside me – guiding, encouraging, nurturing and supporting
I like Dr.Monty Lyman’s book The Painful Truth…it’s not specific to fibromyalgia ( in fact far from it) but explains the complexity of how pain is supposed to work, but highlights how there are obvious exceptions to this ‘norm’ eg badly wounded on battlefield who still manages to carry off a friend, or someone already without leg gets phantom pain in lost foot. So showing pain ‘route’ can switch on/ off…ours are inappropriately switching on. For me though fibro.is all over some moves around daily, to identify it from other pain I always feel it in mirrored pairs…I have been trying a vagus nerve stimulation device since last Friday and on Monday I realised I had no pain when doing my daily swim( first time in years)…it was lovely, but back it came next day with heavy avengence.
It's interesting what you say about switches. While I still list fibromyalgia as one of my conditions, it is a long time since I have felt the need to do anything to relieve the pain - such as using a pressure point board, having an ipsom salts bath or visiting a myofascial therapist. The reason for this is, I believe, the compression fractures I have been getting over the last five (?) years.
L Ron Hubbard writes that if a person has a dreadful problem, give him a worse one; that will fix it. He also writes that "what switches it on also switches it off", just like modern technology. This gentleman received a lot of bad press, but his methods work. So I believe it possible that giving me a worse pain has switched off the worst of the previous pain. I still have pain but I know exactly what it is and why I have the pain. I also know what to do to kill it, though my mobility is severely compromised, and a consultant at a hospital told me about three years ago that the worst thing I could do was sit, and to either move around (walk) or lie down. I find it hard to follow his advice.
I have gone through many different therapies, so any of them could have eventually switched off my pain - not immediately, or I would know what it was that worked. It could have been that I already had something amiss and undiagnosed in my spine or skeleton in general that was the cause of the FM, and when that materialised into what it was destined to do i.e., compression fractures, it switched off the FM. It's just a theory, but believe me, I suffered from FM. I now suffer from spinal compression fractures instead, and that, while I have to be aware of my actions, it is manageable.
Yes that is really what the Lyman book suggests, that the nervous system/brain knows when/ which pain signals to allow thru as appropriate…in your case the actually breaks being acute were more important than the background fibro., perhaps a 5 years of this has flipped the switch to normal…hope it has! Gosh Ron Hubbard is a name from the past…I’ll have to look him up again…
Yes, that is so simple. Could scientists use that information for treatment, I wonder? If the acute pain could be deliberately caused but temporary . . .
Honestly, if you have explained to these people already, their lack of understanding is now a sign that they are not really interested. If someone isn't interested, I wouldn't try to explain any more. I think I would just shrug my shoulders and ask them if they could see my pain - No - neither can I but it hurts like hell. I don't know why, so just accept that today I can't do x, y or z. There's even nothing I can do to make it tolerable. Having to explain it so many times just makes it worse and I wouldn't wish this on anyone.
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Idea for how to explain some communication symptoms to others
How do you deal with confrontation / arguments ?
How are you?
What do you say?
How can we explain the symptoms in one go? Huh damned if I know!...
