Years ago when I first heard of it and got diagnosed I could barely get through the entire word in one go.
But enough people don’t know about it, so after the first several times of explaining what it is, the word starts rolling off your tongue with great ease.
Fibromyalgia.
What is it?
It’s a chronic condition characterised by widespread pain and debilitating fatigue. Fibro means fibrous tissues, my refers to the muscles and algia means pain.
In the medical fraternity there’s still much wrangling over fm and issues around it, including whether it’s officially a syndrome or a disorder.
One sufferer I know always complains to me when her doctor calls it a disorder because she finds it diminishes what fibromyalgia does to us. I understand where she’s coming from but honestly, I’m not sure if I’m bothered with what the medical fraternity calls it for now. Whatever they call it, it affects patients enough to alter their entire lives and being (I can attest to that).
Symptoms
Among others these are some of the more impacting symptoms:
● Widespread pain – which may feel like throbbing, stabbing, burning for instance
● Fatigue – which varies with every sufferer. My fatigue is so debilitating that if I could wish away one single symptom, I think I’d choose the fatigue over the pain which I take loads of painkillers for.
● Extreme sensitivity to pain
∙ hyperalgesia – extremely sensitive to pain)
∙ allodynia – feeling pain from something that should not be painful at all like a light tickle (no poking please 🙂 ).
● Sleep disorders
● Cognitive problems (fibro fog)
● Chronic headaches
● Irritable bowel syndrome
● Depression and anxiety (these problems can be really impacting on us as well, our social lives, and emotional wellbeing).
● Not being able to regulate one’s body temperature (I can be so cold even in 32 degrees celcius! or so hot and sweaty in the height of winter!) weird I know!
● Multiple Chemical Sensitivity Syndrome – sensitivities to noise, bright lights, chemicals, certain medications and foods.
Cause
There’s still contention over the cause of fibromyalgia but there seems to be a general consensus that its onset is triggered by a traumatic event in the patient’s life like an accident or the development of another illness for instance. These events don’t cause fm but rather awaken an already present, but underlying physiological abnormality that the patient may be predisposed to. Leading research now suggests that fibromyalgia may be caused positional cervical cord compression, which presents itself in 70% of fibromyalgia patients.
Diagnosis
Rheumatologists and neurologists are the specialist doctors who care for us. There’s no one test to diagnose fm. Diagnosis is tricky and usually consists of first ruling out the slew of other conditions that may have the same symptoms via testing etc, and then by doing a physical examination and ‘tender point test.’
From my childhood years up until early twenties I went from doctor to doctor undergoing laborious blood tests of all kinds to rule many illnesses.
“She just needs exercise and vitamins” was a common response from the clueless doctors.
After the familiar, stressful blood tests again doctors in NYC diagnosed me with having a connective tissue disease, but rheumatologists in London disagreed and named the culprit fibromyalgia. There you go, fm diagnosis in its simplest form!
There’s no cure for it and each patient is treated differently.
● Medicines – (pain killers, meds to aid in sleeping, different kinds of antidepressants not just for
depression but to address low levels of certain chemicals in our brains, as well as fix issues with the nerve endings in our brains.)
● Therapies – may include tailored exercise programmes, physiotherapy (damn it! – so exhausting!), physiotherapy and psychotherapy like CBT.
I should tell you that exercise tends to have the opposite effect on many fibromyalgia sufferers. A healthy person might feel energised, but however much we manage to do tends to knock us out and can really cause a bad flare up of symptoms (for me it’s muscle pain, exhaustion and dizziness)
My physio has recommended swimming or water exercise as this will take the pressure off my feet where I tend to have a lot of pain problems.
You will find lots of remedies and suggestions on my blog under the section Meds & remedies.
I’ve tried to explain what fibromyalgia is as succinctly as I possibly could. Sorry for blabbing on but I hope this helps all of you who wanted a better understanding of what it is.xxx
Hi what is happening! My pain seems to have worsened. Alisha, do you also in addition to the All over Pain & Fatigue suffer pain where your hips join your legs right at the top? Its really hard to walk most of the time. Horrible. Feels heavy and sore. And my abdominal pain has worsened. Hope you are bearing up Alisha. Mary.😡
Hi Mary, Im really sorry that you’re having a hard time. Remember it won’t last. Try having daily soaks in the tub with epsom salts, taqke a magnesium supplement and drinks lots of ginger tea as well as turmeric tea for the pain. I find Phorpain gel works well on areas that hurt a lot. I am very unwell too, in a lot of pain and very exhausted. Just trying to do all the things I need to to improve. Let me know how you get on ok? Gentle hugs my friends xxx
Hi Alisha! thanks for this post, really really informative. I live in Bahrain and have been suffering from a weird dull pain that increases significantly at night when i’m in bed, to the extent that its hard to sleep. i went to a few doctors here and dd a bunch of tests and all i was given was some xanax as they thought i had a sleep issue and was tired because of that and hence the pain. the base of my feet, joints muscles..all hurts and now I’ve sort of gotten used to it. and its hard to even explain the kind of pain as its not constant, it ranges from wierd burning to throbbing and almost as if its buzzing. i dont know if you ever felt that way…I Googled extensively about it and i kept reading the term Fibromyalgia (thsi was before going to the doc) but when the doc didnt seem to consider it, I was like maybe its not that. but teh pain is still there…it always it. a dull buzz that even tingles sometimes. Do you think this could be Fibromyalgia?
Hi Ankita, I’m really glad that you got in touch. First, let me say how sorry I am that you are going through this. Your symptoms do sound alot like fibromyalgia. I think first you need to get a doctor to consider fibromyalgia . Usually they do blood tests to rule our other conditions, then conduct a tender points test to see if you have pain in certain areas of your body. Fibromyalgia is still a problem-condition as many doctors still don’t recognise it. In my native Trinidad and Tobago, for years I suffered from childhood till I was in my mid 20s. I spent alot of money on extensive tests and doctors there failed to diagnose me but like you, gave me xanax! I was diagnosed in the UK. But before that one doctor in the US told me I might have fibromyalgia but ‘be grateful you’re not dying of cancer.’ Many fms patients go through similar experiences, which adds to our frustration. Would it be possible for you to go to a doctor in another country to get a diagnosis and treatment? If you can’t that’s alright, many fms patients go undiagnosed for years. You will find alot of suggestions for pain relievers on my blog. Please feel free to get in touch if I can help in any way.
This article might be useful on how fms is diagnosed. And I have a blog post on the different kinds of pain you are desrcibing, perhaps something there might help. I wish you well. Keep in touch:) Alisha x
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very good
Very Good.. interesting..
Thank you you Liz
Hi what is happening! My pain seems to have worsened. Alisha, do you also in addition to the All over Pain & Fatigue suffer pain where your hips join your legs right at the top? Its really hard to walk most of the time. Horrible. Feels heavy and sore. And my abdominal pain has worsened. Hope you are bearing up Alisha. Mary.😡
Hi Mary, Im really sorry that you’re having a hard time. Remember it won’t last. Try having daily soaks in the tub with epsom salts, taqke a magnesium supplement and drinks lots of ginger tea as well as turmeric tea for the pain. I find Phorpain gel works well on areas that hurt a lot. I am very unwell too, in a lot of pain and very exhausted. Just trying to do all the things I need to to improve. Let me know how you get on ok? Gentle hugs my friends xxx
Hi just passing thru. Sending gentle hugs from a fellow sufferer. Maz.xxxx
I’m so glad to hear from you Maz. How are you doing? I hope things are going well. Gentle hugs my friend xxx
Hi Alisha! thanks for this post, really really informative. I live in Bahrain and have been suffering from a weird dull pain that increases significantly at night when i’m in bed, to the extent that its hard to sleep. i went to a few doctors here and dd a bunch of tests and all i was given was some xanax as they thought i had a sleep issue and was tired because of that and hence the pain. the base of my feet, joints muscles..all hurts and now I’ve sort of gotten used to it. and its hard to even explain the kind of pain as its not constant, it ranges from wierd burning to throbbing and almost as if its buzzing. i dont know if you ever felt that way…I Googled extensively about it and i kept reading the term Fibromyalgia (thsi was before going to the doc) but when the doc didnt seem to consider it, I was like maybe its not that. but teh pain is still there…it always it. a dull buzz that even tingles sometimes. Do you think this could be Fibromyalgia?
Hi Ankita, I’m really glad that you got in touch. First, let me say how sorry I am that you are going through this. Your symptoms do sound alot like fibromyalgia. I think first you need to get a doctor to consider fibromyalgia . Usually they do blood tests to rule our other conditions, then conduct a tender points test to see if you have pain in certain areas of your body. Fibromyalgia is still a problem-condition as many doctors still don’t recognise it. In my native Trinidad and Tobago, for years I suffered from childhood till I was in my mid 20s. I spent alot of money on extensive tests and doctors there failed to diagnose me but like you, gave me xanax! I was diagnosed in the UK. But before that one doctor in the US told me I might have fibromyalgia but ‘be grateful you’re not dying of cancer.’ Many fms patients go through similar experiences, which adds to our frustration. Would it be possible for you to go to a doctor in another country to get a diagnosis and treatment? If you can’t that’s alright, many fms patients go undiagnosed for years. You will find alot of suggestions for pain relievers on my blog. Please feel free to get in touch if I can help in any way.
This article might be useful on how fms is diagnosed. And I have a blog post on the different kinds of pain you are desrcibing, perhaps something there might help. I wish you well. Keep in touch:) Alisha x
http://theinvisiblef.com/2014/11/11/types-of-fibromyalgia-pain-my-remedies/
http://www.arthritisresearchuk.org/arthritis-information/conditions/fibromyalgia/diagnosis.aspx