Fibro, Fibromyalgia, FMS, Practical Fibro

Basics.


You may have stumbled across this blog because you were looking online for information about fibromyalgia. Perhaps you know someone who has it, or maybe you yourself have been diagnosed with it, or are searching for an explanation of your myriad of signs and symptoms. Either way, I hope this might be of some help to you.

Firstly, it’s important to understand that fibro gives rise to a veritable multitude of separate and sometimes seemingly unrelated symptoms. The following is a short list of just some of the more common problems associated with fibro, and is by no means comprehensively complete. It’s also important to realise that you may or may not get ALL of these symptoms, and you may get others not listed here, too. Having said that, ALL fibro people suffer from unrefreshing sleep, depression, fatigue/exhaustion, brain fog, and the feeling of wading through sticky toffee/ wet concrete/ treacle / water/ take your pick of movement-restricting substances. Diagnosis is usually confirmed by the identification of Tender Points, which are parts of your anatomy where bones, muscles and tendons join up (insertion points) which give rise to the most stunningly unexpected intensity of pain when the specialist gently presses them. It feels like they just stabbed you with a red hot poker, then hammered it in a bit more. Turns out it was just their fingertip pressing lightly.

Anyway! The basic list:

Exhaustion, not explained by exertion.

Waking up as tired as when you went to sleep.

Total lack of energy.

Feeling like you’re wading through treacle/wet concrete, or that your entire body is made of lead.

Muscle pain.

Bone pain.

Joint stiffness and pain.

Chemical intolerances and allergies.

Bad reactions to binders, fillers, additives, preservatives etc used in supplements and prescription meds – even the ‘same’ drugs can cause a bad reaction if manufactured by a different company/in a different factory. There are a ton of meds that I can only tolerate in their original branded form – the generic versions make me violently puke and swell up. Occasionally, a generic won’t have any effect at all – not even managing to achieve the thing it is supposed to do!

Intolerances and or allergies to foods and drinks (I can’t tolerate tap water without being ill, which is ludicrous and annoyingly inconvenient), also other things such as insect bites and stings, dogs, cats, horses, dust, pollen, latex, feathers, etc, etc. Preservatives, additives, e-numbers, colours, etc, are also very common in processed foods and drinks, and it can be those rather than the ‘naked food’ itself that causes a bad reaction/intolerance/allergic response.

Feeling too cold/too hot, apparent inability to regulate own body’s temperature.

Prone to infections, viruses, etc.

Poor circulation, can be severe enough to cause pins and needles in your hand when you’re on the phone, or in the back of your head when you’re in bed or resting your head against a cushion, for example.

Nerve pain and or damage. Manifests as shooting pains in hands, feet, arms, legs, sometimes other parts of you. Is like getting electric shocks, as I remember from badly navigating my way over or under electric fences when I was a teenager in the countryside.

Back pain, sciatica.

Neck pain.

Trouble opening mouth fully.

Constipation, diarrhoea, IBS (Irritable Bowel Syndrome).

Fluid retention (oedema) affecting face, hands, legs, feet, body (any or all).

Sinusitis, post nasal drip (which is infected sinus gunk dripping down the back of your nose into your throat, and makes your mouth feel like the bottom of a shit-covered bird-cage). The sinusitis can be so bad that it may be mistaken for a migraine because the pain can be so severe.

Rhinitis (where the delicate mucous membranes inside your nose get swollen and inflamed, and make breathing through your nose very difficult and or uncomfortable). Can be allergic rhinitis, or part of a general inflammatory response caused by a cold or other virus.

Sore throat.

Sneezing for no apparent reason.

Sneezing that produces goose-bumps (this is deemed to be an overly sensitive nervous system thing, and I have yet to meet anyone else who experiences this, aside from a handful of other fibro patients).

Headaches, ranging from minor pain to monumentally disabling migraines, complete with vomiting on a scale that rivals the girl in ‘The Exorcist”.

Cluster headaches, which are differentiated from ordinary migraines by the consistent swelling of one or both eyes during the attack, with the affected eye(s) streaming like mad.

Nausea, vomiting, not connected to migraine.

Digestive difficulties, including leaky gut.

Various nutritional deficiencies due to digestive difficulties, caused by low stomach acid and poor levels of digestive enzymes. Also often caused by poor diet resulting from inability to go shopping, make decisions, prepare and cook food, and feed yourself -very common if you’re living alone with no practical support.

Brain fog.

Depression.

Anxiety.

Panic Attacks.

Insomnia.

Nightmares.

Irritability, mood swings.

Dead/numb or tinglng feet, hands, or other parts of you (hands and feet most common), classed as Peripheral Neuropathy.

Low (hypo) thyroid.

Low (hypo) adrenal glands.

Inability to tolerate exercise.

Breathlessness.

Inability to concentrate.

Absent-mindedness (often put down to age, even when you aren’t even thirty yet!) ranging right up to total forgetfulness.

Inability to remember recent events, or things you’ve said or done (I frequently find lists in my own handwriting that I have no memory of having written).

Inability to process information, loss of understanding how to complete ordinary “automatic” tasks, like boiling a kettle, or NOT trying to open a car door while the car is still moving.

Muscle spasms (aside from the gut-muscle spasms that cause the IBS).

Muscle weakness.

Balance issues.

Poor hair, nails, skin (this varies hugely between individuals, with some unaffected whilst others may have fab nails but rubbish skin and hair, or fab skin and hair, but rubbish nails).

Seizing up if you sit or lie down for “too long” (can be as little as 5 minutes, but is worst first thing after waking up). Annoyingly, activity can produce exactly the same effect.

Restless legs.

General feeling of illness.

General feeling of physical discomfort.

Acid reflux, heartburn (actually caused by failure of the valve at the top of the stomach/base of the oesophagus to close properly, and NOT by over-production of stomach acid, as is commonly diagnosed).

Feeling pain from pressure on skin/muscles which would not produce pain in a “normal” body (allodynia). Shaking hands, being clapped on the back, being hugged can all cause intense and unexpected pain in the fibro body.

Excessive nervousness, anxiety, restlessness, feelings of dread and worry.

Excessive sleeping, can be 20 hours out of 24 in some cases.

Inability to stay asleep for longer than a couple of hours at a time.

Feeling of “crashing” when you’ve done too much, is very like walking into a brick wall.

Easily overwhemed by even small things/chores/tasks. Physically, going to the bathroom can seem like climbing Mount Everest twice before lunch, in a blizzard, carrying 50 lb sandbags. Mentally/emotionally, answering the phone or opening the mail can leave a fibro person trembling in fear. Major emotional events can virtually paralyse a fibro sufferer.

Inability to cope with stress.

Disproportionate tiredness after any activity – travelling ten minutes to the Dr’s can put you to bed for days, longer journeys put you to bed for longer still.

Exacerbation of all symptoms (a ‘flare’) following any physical, mental, or emotional stress.

Co-existence of recognised auto-immune conditions like Lupus, rheumatoid arthritis, and others, where your own body attacks itself by producing antibodies against perceived invaders/problems.

Inability to ever fully relax – everything is stuck in ‘fight or flight’ survival mode (I often think that fibro is a form of, or very similar to, PTSD, and one fibro theory ties its onset to severe trauma events such as sexual abuse, RTAs, accidents, etc).

Poor blood pressure control – either high or low.

Vulvodynia, or vestibulodynia (painful entrance to the vagina) (obv doesn’t apply to the rare men who are diagnosed with fibro, and I have no idea if there is a male equivalent to this, which could well be called Penodynia, or something, I don’t know! – If you do, then please let me know!)

Tendency to boils, abcesses, cysts.

Polycystic breasts, ovaries.

Whilst some of these look entirely unconnected, the fact is that they are ALL recognised signs and symptoms of fibro. There are others that I’ve probably forgotten, and still more that I’m probably unaware of.

If you think you can add to the list, please let me know in the comments section!

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9 thoughts on “Basics.

  1. FirStly, how do you get tested for this? As many of my symptoms are related and I am not coming up with many answers. Secondly, are you on any medication for it that works? I’m currently taking Lyrica for pain in my neck. It is meant to be helping – but nothing. I related so much to these symptoms… many of them… Which is sad. I don’t know much about Fibro but I am trying to make myself more aware as I search for my own answers xx

    Liked by 1 person

    1. Soz, Cass. Been tied up with a visitor from the council who I need help from.

      Most reliable method of dx is having a rheumatologist test the 18 symmetrical pairs of Tender Points on your body, arms, hips, shoulders,neck and knees, and seeing how high off the examination couch you leap!

      I didn’t know about tender points, although everything hurt all the time and my muscles never relaxed, ever. The tender point test shocked me, seriously. I had no idea any bit of me could hurt that much, so viciously. It took most of my breath away – and the rest of my breath got used up in one indignant screech.

      Easy self-check – If you find the bit of you on the side of your hips that lines up roughly with about an inch above the bottom of your pubic bone (haven’t explained that at all well – find bottom of pubic bone, draw line out to side of hip, move finger up about an inch, push), and gently press with a fingertip, you’ll really feel it if that tender point is present.

      There are diagrams all over the net about tender points, so have a look at the, then do some exploratory prods and see how much it hurts. Sounds masochistic, but it’s the only reliable way to know if fibro is part or all of the problem. If you discover shockingly hurty bits that continue to hurt for ages after you’ve stopped pressing, get a referral to rheumatology pronto.

      The most alarming thing for me was that after thirty odd years of trailing round every specialist going – endocrinologists, orthopods, gastro, neurology, immunology, you name it, they’ve all investigated me and pronounced me “normal” (not to mention the private docs, the alternative medicine gurus, the meditation brigade etc etc ad frigging nauseum) – the first rheumy dx’d me in less than ten minutes. Then he lost me in the system, so we went to another hospital, where a second rheumy dx’d me with same Severe Fibromyalgia, also in less than ten minutes. After those endless, endless hours and hours of waiting rooms, and investigations, and false hope crashing into despair on a thirty year loop, rheumatology got me in minutes.

      Did you read my “Basics” post? Or my first one? I think I described the eventual dx in there, and a lot of the common signs and symptoms are in the “Basics” one.

      Do let me know what you conclude re your undx’d illness poss being attributable to fibro – it isn’t a solution, per se, BUT it at least gives you a bit of armour to fend off the Normals who insist there’s nothing wrong with us. It at least gives you some validation by the medical profession, which then helps validate you in society. I used to feel pathetic when my best answer to the question, “What’s wrong with you THIS week?” was a limp, “Don’t know, really…..just really tired and feel ill.” At least since 2011 I can say, “I have fibromyalgia, and it’s a BITCH.”

      Let me know!
      L. Xx

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    2. Re meds etc – I’m way too chemically intolerant. Can’t take gabapentin, pregabalin, tramadol, amitryptaline, any anti-d’s, any non-opiate pain killers.

      Take dihydrocodeine, morphine, steroids (incl thyroid as well as adrenal steroids), Imigran (100mg tabs, nasal sprays, injections for the super-bad attacks), Buccastem, Zofran, Metoclopramide, Cyclizine anti emetics. Valium and temazepam for muscle spasm and anxiety and depression and restless legs. Loperamide to stop the shits. Gaviscon for the acid reflux. Various topicals. Oral antifungals. Intolerant to dangerous degree to most anti b’s, and even throw a bad reaction to generic versions of branded products, so, eg, I can tolerate branded Augmentin in suspension but not in capsules or tabs, and I can’t tolerate generic suspension version either. Reacted terribly to amitryptaline with burning, searing nerve pain, also usual s/e of dry mouth totally wrecked my dentition. Chemo gave me bladder and bowel nerve damage, as previously observed. GP now so used to my weird reactions – even a different generic of verapamil (calcium channel blocker supposed to prevent migraines) produced hideous response.

      Also take Buscopan for the IBS spasms.

      There are some dirty drugs out there, some dirtier and more evil than others. I know as soon as I’ve read the s/e list now. What a skill, eh?

      It’s all trial and error, some people tolerate the drug options more easily than me, some are even worse than me. My rotten responses are the reason, along with the lack of dx for so long, that I got interested in natural medicine. But that’s a whole other subject!

      What, if anything (drug-wise – oh! Now there’s a juxtaposition if ever I saw one!) helps you at the moment?

      L. X

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      1. Wait, so where in the world are you living? I’m in Australia…
        Wow. So many medications.
        I’m currently on trials. Lyrica for muscle/nerve pain but it leaves me dizzier and nauseous.
        Cisapride for stomach digestion.
        Nexium/Buscopan as needed.
        Valium for nerves as needed!
        I hate taking medication – especially the ones that are not working and the doctors insist I stay on them. Our poor livers
        xxxx

        Liked by 1 person

      2. I’m in UK. Where in Oz are you? I have a friend in Perth, and spent 6 weeks with her in 2009. Loved it.
        Yes, poor livers. I tend to control my own meds now. Took me a good old while to get my docs to understand that if it ain’t helping, and I’m getting s/e’s, it’s not going to be doing me any good. I hate drugs, by and large, but the ones that work for me – well, I don’t want to be without them, thanks. I would probably kill to keep my migraine meds! X

        Liked by 1 person

      3. I’m in Melbourne. It is lovely here. I’ve never been outside of australia but I’d love to travel once this illness is under control!

        Oh do you know how many arguments I have had with them over medication? But they assume medication fixes everything because that is all they know inside of their bubbles xx

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      4. I know what you mean. It’s their training. All meds schools are funded by Big Pharma, and they set the syllabus. A doctor’s training isn’t 6 years of “Here’s someone ill, why are they ill and what can we do to help them?” It’s 6 years of “Name that illness and the drug that will fix it.” So when people like me toddle in, wittering on about K2 reversing my rampant osteoporosis (the theft of my oestrogen with the cancer treatments) after zero improvements on Big Pharma’s version of calcium and synthetic D3 (D3 dose so tiny as to be eff all use, and deliberately so) that they’d had me on for 6 years then, they don’t like it. I seriously challenge what they’ve been taught, because, eg, it is “impossible” to reverse osteoporosis. But my scans prove that’s untrue. I read somewhere that this attitude of refusing to accept the evidence because it doesn’t fit with what you think you know is called Cognitive Dissonance. Majority of medics suffer from it. I am a Marmite (Vegemite) patient. Some think I’m amazing, some can’t stand me.

        L. X

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    3. Oh arse.

      Of COURSE you’ve read the Basics post – yr comment is in response to it! D’uh!

      Pushed too hard yest, paying today, and brain seriously abdicating normal duty. Soz!

      L. X

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