The invisible illness – Fibromyalgia

Welcome to the free week here on Four Foxes One Hound!

Today is the 28th July,  the 209th day of the year in the Gregorian calendar. There are 156 days remaining until the end of the year.

Late last year, I had Kimberly Rae as a guest on this blog talking not only about her latest book, but also about Addison’s disease.
Today, I’m very grateful to introduce you all to Bec Brown. I’ve met Bec on Facebook, and when I saw her avatar, a cute little owl “Help spread the word – Fibromyalgia Awareness” I asked her to be my guest on 4F1H. Fibro

First of all, thank you very much, Bec, for being my guest today!
Thank you, Iris! I’m happy to be here.

Q: You have Fibromyalgia. For those who aren’t aware of the illness, could you explain it in easy terms?
A: That is the million dollar question! The ‘basic’ textbook explanation for Fibro (the abbreviated term for Fibromyalgia) is “A chronic disorder characterized by widespread, fatigue and tenderness in localized areas.” But that really doesn’t cover it all, it includes cognitive dysfunction (often called fibro fog) hypersensitivy to things like light, heat and sound, sleep disorders… the list is quite long.

Q: How did you find out, you have Fibro?
A: I kept on getting sick, one thing after another, my doctor at the time was great (he moved away!) sent me for lots of test and when they didn’t come back with something ‘really bad’ (cancer/MS) he sent me to a Rheumatologist who came back with a diagnosis of both Fibro and also Chronic Fatigue Syndrome/ME (Myalgic Encephalomyelitis – yep even I can’t say that!). But given the symptoms I’m fairly confidant I’ve had the Fibro basically all my life, growing up had constant issues with my joints, weird pains the doctors would try and tell me were ‘growing pains’. It also runs in my mum’s family – mum has it, her older sister has it (and the CFS/ME), my nana has it, and we were pretty sure my pa had it as well so it wasn’t a surprise. While the more you find out about it and fibro Calvinall the symptoms etc it can be overwhelming it was also a bit of a relief – I had all the worst case scenarios running around in my head. It was good to finally have a name to put to all the weird stuff – and to realise that as new symptoms came up it was just another symptom and not something new I had to worry about.

Q: How does Fibro affect your life?
A: I used to be one of those can’t sit down multi-tasking to the max kind of people. I was always on the go doing 2 or 3 things at once. When I was in Year 12 (final year of High School) Term 3 holidays I started working full time in a law firm, finished my exams, along with a Tafe course I was doing all at once. I didn’t really stop for years, while working full time I also did another Tafe Course over 3 years. I was running a small office, oversight of million dollar trust accounts, handling my own Conveyancing files. I spent a lot of times driving between home and friends places down the coast 2-3 hours away on weekends. When it all really hit me (the CFS/ME and the Fibro getting worse) but before I was diagnosed I just kept trying to push myself, I got glandular fever, tonsillitis, chronic chest infections but couldn’t really take much time off work for various reasons. I was constantly tired but even if I slept all day I wouldn’t feel better. I was struggling to stay awake driving even on short trips between work and home.
After I was diagnosed I decided that I needed to start cutting back. I stopped driving any long distant, I stopped trying to go to the gym, my social life (what was left of it) went to pretty much non-existent. I went from 5 days to 4 days at work and usually spent most Wednesday’s in bed. Unfortunately my work load didn’t get cut back, in fact it increased. This kept going for about 6 years but things just kept getting worse. I just felt constantly under pressure with work and my brain just wasn’t functioning properly so I decided that I needed to look for work in a different field.
I have always loved books and reading and one of my ‘dream jobs’ was to work in a Library. You are now required to have tertiary qualifications to work in a Library. I was able to undertake a Tafe Course which was considered “off-campus” but had weekend classes. Thankfully my lovely sister drove me the hour to the Tafe and my cousin and his wife let us stay in their spare room – I wouldn’t have been able to do this otherwise. I was still working 4 days a week and my brain constantly felt like that yoghurt add that used to be on “mummy that lady looks fuzzy’. It was like having a hangover without the fun night out before. It took me 2 years to do this course and I was fortunate enough to obtain a job in a High School Library ½ way into the second year. This new job meant I had to go back to 5 days per week but the advantage was I get 12 weeks PAID holidays per year (they spread your pay out). If I was sick, I could stay home without the stress of what mess would I come back to when I got back to work. It was a pleasant change.

I’ve been in this job for 2 years now. It’s taken me over 1 year before I finally started to feel my brain fog starting to lift. I no longer have the constant stress and pressure on me like I did in my old job. I’m still in pain almost every day. I still have days where I can’t string a coherent sentence together. I’m still incredibly tired – I’ve almost fallen off my chair more than once! But I’m finally happy at work, I’m currently on holidays and am actually looking forward to going back next week. I also started a Book Review Blog http://geckogirlreads.blogspot.com.au/ which I’m enjoying writing when I’m feeling up to it. I still don’t have much of a social life but I do have a few friends who are supportive and don’t care if I fall asleep on their couch when over for a visit.

Q: We’ve been “talking” a bit about the ‘side effects’ of having the illness, one of which is fatigue. What other symptoms do you have and how do you cope?
A: Were to start… headache/migraines, vision issues (when things were really bad I was worried I was getting a ‘blind spot’ – thankfully that went away), any exercise (or even just walking or doing too much) makes me feel like I’m getting the flu, I’m exhausted for weeks, pain in my joints and everywhere else including tightness in muscles (legs and neck are the worst) my bed consists of my mattress, then a latex memory foam mattress, then one of those wavy foam overlays to help with the pain in my joints at night, I also have a latex pillow that I sleep with between my legs because my knees hurt when the touch each other when I sleep and one I kind of ‘hug’ to stop my arms hurting. I have ongoing issues with my knees and feet – having size 10/11 feet is hard enough to find shoes, finding ones that don’t hurt or rub is near impossible. Even a minor blister/rubbing gives me pain that makes me want to throw up. I usually end up with bare feet under my desk at work!
My skin is over sensitive – some days are worse than others – tags on clothes feel like they are made of barbed wire (most of my clothes don’t have labels for that reason), a lot of fabrics I just can’t wear, on a bad day it feels like my skin is on fire or like hives. Also my other senses are sensitive, I already have sensitive hearing but this makes it worse. When I’m having a bad day I can’t be in loud busy places, its just too overwhelming, sometimes its like I can hear ever conversation at once. I have trouble with too much light and still don’t like driving at night.
I have constant allergies and sinus issues. I often get eczema even in my ears (which is sooo annoying).
I often have times I feel like someone is sitting on my chest, struggling to breath. I’ve also developed Asthma since getting sick.
The sleeping issues are probably the worst –I’ve always been a bad sleeper but it’s definitely worse. Even when I do sleep you don’t get deep refreshed sleep so you wake up as tired as you went to sleep (actually its usually worse because I generally go to sleep late because I know I have to, usually by night I’m wide away!)
I also have a lot of digestion issues which are frustrating and can be painful on their own.
On top of these ‘physical’ symptoms there is also the neurological ones including issues with short-term memory, forgetting words to everyday things (this can be scary), bad balance – I often feel dizzy or walk into door frames because I can’t judge the space properly, trouble with concentration (this was not fun while studying), trouble speaking – I often know what I want to say but can’t get the words out, I sound drunk trying to talk. Issues with numbers (I’m already a bit dyslexic when it comes to numbers but this makes things worse – not fun in my old job when I was dealing with big numbers all day)
Then there are the ‘fun’ ones – the hair loss (thankfully I started out with very thick hair!), bruising/scarring easily – this is always ‘fun’ when you add being clumsy to the mix.
PMS and Endometriosis (which is made worse by both the Fibro & CFS/ME).
Then you add in the CFS/ME symptoms that don’t overlap including muscle aches/weakness, swelling. Chronic cough & sore throat, tender lymph nodes, issues with body heat (think hot flushes and major sweating!), dry mouth, random rashes.

This is a great website for a comprehensive list http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm

Wow that was a long list – might have a rest now zzzzzzz

Oh I forgot – How do I cope? When I can I try to rest. I pick my ‘battles’ if there is something (an event, something with friends etc) that I really want to do, I see what else I can drop to conserve some energy. If I have something on at night I try to have a rest in the afternoon. Learning to say no is hard but necessary and something I’m still working on. When things get really bad painkillers help (but I hate taking them – stomach issues), and I know I’m not as bad as other people. The symptoms can vary from ‘bearable’ to being totally bedridden and I am somewhere in the middle of the scale.

Q: How important is it for you to have the support of family and friends?
A: HUGE. There is no way I would of been able to retrain and change jobs without the help of my sister driving me to and from Ballarat every month (and in the second year twice a month) and my cousin letting us stay up there. My sister and I were living on our own for a couple of years but when I got really sick we moved back home (which involved both us and my parents moving into a new house). If it wasn’t for their support I don’t know where I would be. My mum knows what I’m going through because she is dealing with it as well. My sister is my hero, if we are going anywhere she normally drives which is huge for me because it means I can save my energy for what we are doing. I have a few close friends (who are more like family) who are supportive. They know I can’t always do things, and often find something to do they know I can join in with (a board game, movies etc) and don’t care if I have to go have a nap in the middle of the day.
I know many people don’t have family support or understanding and that is really hard.

Q: Is there any advice you would or could give to others out there with an “invisible” illness?
A: Don’t give up. Try and find a support group, I’ve found a few on Facebook (I always go for the closed/private ones) that have helped especially when you get a new ‘symptom’ it’s good realising you’re not the only one feeling like that and others can often give you some good suggestions or even just a safe place to ‘vent’ now and again.
Try to find out what you can about your illness because often we know more than the doctors. If your doctor treats you like it’s all in your head find a new one – if you contact the local support group in your state they often have a list of doctors who deal with your condition.
If you have the energy and its appropriate, let people know about your condition because the problem with invisible illnesses is that you often don’t “look sick” so people don’t understand why you can’t do something you may have been able to do before. That being said because of the bad rap CFS/ME often gets I often only mention I have Fibro because it’s easier.
And don’t listen to all those people who tell you its “all in your head” because it’s real and you’re not crazy!

I really like this explanation for what it’s like – it was originally written by someone with lupus but it fits for conditions like Fibro & CFS/ME (its a great website too)
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Thanks for having me Iris. Absolutely delighted to have you here!

Connect with Bec:
Bec’s Blog: http://geckogirlreads.blogspot.com.au/

I’m so grateful to Bec to have taken the time to answer the questions. As some of you possibly know, I’ve got a histamine intolerance with symptoms of Fibro. I have the deepest respect for Fibro sufferers, who have to go through the above pains and aches on a daily basis. Let’s hope one day, we’ll find a the reason behind it and a cure!

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About Iris B

Iris Blobel was born and raised in Germany and only immigrated to Australia in the late 1990s. Having had the travel bug most of her life, Iris spent quite some time living in Scotland, London as well as Canada where she actually had met her future husband. Her love for putting her stories onto paper has only recently emerged, but now her laptop is a constant companion. Iris resides west of Melbourne with her husband and her beautiful two daughters as well as her dog. Next to her job at a private school she also presents a German Program at the local Community Radio
This entry was posted in Australia, disability, Family, Friendship, Guest, Life and tagged , , , , , , , , , . Bookmark the permalink.

35 Responses to The invisible illness – Fibromyalgia

  1. Krysten H says:

    Thanks for this informative post!

    Like

  2. Suzi Love says:

    Bec, you and I are twins. Hair loss, bruises, cutting tags off everything, the loud noises intolerance …all of it. Yep, fibro sucks. Bigtime. And I agree. The hardest thing is explaining to people how you feel on the inside when you ‘don’t look sick’ outside. Wouldn’t it be nice to feel hungover having actually enjoyed the wild party?
    Ah, well. That’s life and we just get on with it, don’t we?

    Like

  3. So interesting. I have friends with fibromyalgia. They inspired me to put a character with fibro in my YA book Cornered. My heart goes out to all who suffer with it…

    Like

  4. Jeanne57@gmail.com says:

    Well this post has convinced me that this is NOT what my husband suffers from. (That, and the fact that his doctor told him if this was what he had, he’d be dead by now.) He’s had constant pain for the last three years, but it’s always in the same spot, but still, no one can find a medical reason for it. It sucks. He’s on 340-380mg of oxycodone a day, and he can still barely function. The least little bit of exertion exhausts him, and he goes right to sleep. (And no, it’s not the meds doing it.)

    Like

    • geckogirlreads says:

      I hope you can get a diagnosis for your husband, constant pain is exhausting even if its only in one spot. Your doctors comment is strange (although not surprising) while its a horrible condition never heard of it being fatal in that sense (extensive pain is unfortunately a tipping point for suicide for some people). My thoughts go out to your husband and you

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      • Jeanne57@gmail.com says:

        I thought it was a rather strange comment, too, as I had never heard of it being fatal. Maybe I should get the GP to refer him to a rheumatologist…

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    • Iris B says:

      Hi Jeanne – I hope he’ll find out soon what the cause is. Constant pain is bad enough, but not knowing the cause for it …. <>

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  5. I have a several autoimmune diseases, but at one time, the idea of it being Fibro was tossed around. I understand the pain, fatigue, etc. I could go on forever about ‘hidden’ illnesses and how very hard it is to balancing what you must do, what you can do and what you want to do.
    Then there is the ‘letting people know how you feel’ against ‘chronic complaining’ or worse, their perception that you are only complaining.Those without chronic illness can often be sympathetic,but they can never truly understand, and often, their sympathy grows thin.Either you are treated like you are dying or are treated as though you have control over how you feel.
    I hope you have a wonderful life.

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    • geckogirlreads says:

      Thanks Tonette, yes sometimes its just ‘easier’ to reply with ‘I’m good’ to the “how are you” comment because you think people just really don’t want to know.

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      • Because they truly can’t relate, they don’t believe that anyone can feel so bad so much.You are right.Most of the time, the answer is neutral from me.

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      • Suzi Love says:

        Yes, definitely better to just nod your head and say ‘yes, I’m feeling better’ than explain that with chronic illnesses you never get to the “Feeling Good’ stage.

        Like

    • Iris B says:

      I agree, Tonette. The worst part for me is, to tell my girls “not today, I’m not feeling well” … they understands, but it’s really frustrating at times!

      Like

  6. jeff7salter says:

    Welcome to 4F1H, Bec. And thanks for helping educate others about the multiple ways fibro can impact a life.
    We have a lot of parallels.
    I’ve had back pains since ’68, chronic exhaustion since ’74, many ‘mystery’ problems through the 1980s… and finally was diagnosed in late ’92 with fibro. Nowadays you see Rx ads on TV for fibro, but in ’92, it was hardly known… even by doctors. I’ve gone through various treatment programs, with a variety of drs., inclu. rheumatologists. Most of the meds had so many side effects (not even counting expense) that it sometimes felt like trading one set of symptoms for another. In me, the meds created that mental fog you mentioned and also tore up my stomach.
    Much later, I was diagnosed with disk problems and osteo-arthritis… so that’s a few extra factors to cope with.
    Yes, there can be issues with depression which accompany the pain. Sleeplessness contributes to a horrible cycle of worsening both the pain and depression. Concentration is out the window. ‘normal’ physical activity is gone, or done at great risk to your symptoms. Travel is exceptionally difficult.
    The elephant in the room is that often fibro patients “don’t look sick” — which often translates to acquaintances / friends / relatives as “he’s lazy, he’s negative, he doesn’t WANT to go/do/participate” etc. That’s salt in the wound.
    Thank goodness we can connect with others who have similar symptoms who DO understand.

    Like

    • Iris B says:

      I had no idea, Jeff !!!!! All this time we’ve known each other and we’ve got this in common … the fog, the pain, but having it for over twenty years …. sending you a massive M&M hug from this end of the world!
      Another one is …. “she’s such a weak person, she stresses to easily” …

      Like

      • jeff7salter says:

        I think we had both made indirect references to our medical issues, though neither of us elaborated on it.
        Yes, the chronic exhaustion for 41 yrs and fibro for 22 yrs — the cumulative effect can be quite daunting at times. Good that I have my writing to focus on.
        Thanks for the M&M hug!

        Like

    • geckogirlreads says:

      Thanks Jeff, yes its sad that even today a lot of doctors still don’t really know much about it. It was kind of ironic that the Rheumatologist that actually diagnosed me with Fibro & CFS/ME but his attitude was that he didn’t really believe it was a real condition. My doc was very good and said I didn’t need to go back to him. Yes I’ve tried a few different medications but generally made things worse. I’ve found going to a natural therapist who is also a GP has been good, she has send me for HEAPS of tests and found I was very low in lots of things so treating those has helped a bit. Its great to have people who understand.

      Like

      • jeff7salter says:

        I had an uneasy relationship with my first rheumatologist. She seemed to bristle when I asked questions… and I guess I sometimes bristled when responding to her. It didn’t help that she had wanted me to participate in a panel (with some nursing students) but I didn’t learn about it until after it was over. She asked me why I didn’t and I said I was never told about it. So it came down to her suspicion that I was lying, because she was certain her nurse had contacted me. I was equally certain that I’d never heard a word about it. Interestingly, it was not long afterwards that she closed her practice (and she was a young woman).

        Like

  7. Suzi Love says:

    Yes, at least we can understand each other. That helps.

    Like

  8. pjharjo says:

    I found your guest blog really interesting, Bec. Thanks for the enlightenment. Although I do not have the invisible Fibro condition, I do have an invisible disability and completely understand what you go though with it. A little chuckle came to me when you mentioned those who tell you “it’s all in your head.” Actually, they are right when they say that to me; it IS all in my head. LOL! I have TBI. Again I say, thank you for posting today. 🙂
    Speaking of my TBI, I went to your blog site, but sometimes I am more challenged that others and I was unable to find how to get my book/s on your review list. I will appreciate your response on this when you have the time/energy. 🙂

    Like

  9. pjharjo says:

    Oh Yeah! I, too, bounce off walls a lot! LOL!

    Like

  10. pjharjo says:

    I meant I am more challenged THAN others. LOL!

    Like

  11. Suzi Love says:

    Thanks again to Bec and Iris for highlighting this as I think the more people read about invisible illnesses, the more they will know what to say and how to offer help.

    Like

  12. Jeanne57@gmail.com says:

    Just talked to my GP today about fibromyalgia, and he said it was one of those diagnoses he hates, because it’s more or less a dumping ground for a list of symptoms they can’t find any real cause for. He’s more into finding out what’s REALLY wrong, and he said a lot of people get dumped into the “fibromyalgia basket” and when a new diagnosis for some of the symptoms comes along, these people are ignored, when they may have something more legitimate. He doesn’t doubt that people who have been diagnosed with fibro do have real symptoms, and do have something physically wrong, but he feels that it’s a lazy diagnosis for when doctors can’t find the real cause of the symptoms. (He thinks IBS falls into the same category, too.)

    Kind of like my husband, who’s been labelled with “chronic pelvic pain” by other doctors, just because they can’t find the real reason that he’s been feeling like he does. Many of his symptoms mimic what has been termed “fibromyalgia” like cravings for carbos and chocolate, chronic fatigue, constant pain, etc. I’m not saying this to try to offend anyone, just that it wouldn’t hurt to keep seeing other doctors, and keep looking. Advances in medicine are being made all the time, and if you’re labelled with fibro, they won’t bother looking at you for some of the new stuff they’re discovering.

    And like you, Iris, a lot of the symptoms you have mimic what has been termed fibro, but you know that you have a histamine intolerance, which is the REAL cause of your problems. Our GP has been treating Rick’s symptoms for three years now because that’s all he can do at this point, but he’s never stopped looking for what his real problem is. I wish there were more doctors like him.

    Like

  13. geckogirlreads says:

    Hi Jeanne,

    I agree, a lot of doctors if they even believe in Fibro don’t really understand it and use it as a lazy diagnosis. I have been fortunate to have come across a couple of good doctors who were constantly looking and different options/tests to rule out anything else because there are a lot of overlapping conditions (such as ISB) that have similar symptoms. They are currently trying to get universal guidelines for diagnosing Fibro & CFS/ME (as well as changing the name of CFS because its really not appropriate) as well as better tests so hopefully this will help clear up a lot of misdiagnosis. My current doctor regularly does different blood tests to make sure there isn’t other things contributing to my symptoms which could be rectified such as low Vit D & B

    Like

    • Jeanne57@gmail.com says:

      Our GP does regular blood tests on Rick, too, and B12 shots were one of the very first things he tried at my suggestion. So far, the hospital has been focusing on urology (because the pain started in his prostate), but now he thinks there may be some type of bowel blockage, especially since he has been waking up with what he thought was drooling (mess all over his clothes and pillows) but he woke up once while it was happening, and it’s coming out of his nose. Thing is, though, it’s stomach contents, so he’s literally vomiting out his nose while he sleeps. Yes, I know that’s gross, but there HAS to be a reason for that happening. He hasn’t had a gastroscopy yet, and should have a colonoscopy, too.

      The pain clinic at the hospital dismissed him, because all they wanted to do was get him off all the pain meds he’s taking without doing anything about the pain. Our GP wrote to them and told hem they shouldn’t have done that, because they haven’t checked everything yet. Yes, they’ve done extensive tests on his urinary tract, but nothing about the bowel problems.

      Like

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