Still Ill – a lifetime of chronic unexplained illness

I decree today that life
Is simply taking and not giving
England is mine – it owes me a living
But ask me why, and I’ll spit in your eye
Oh, ask me why, and I’ll spit in your eye
But we cannot cling to the old dreams anymore
No, we cannot cling to those dreams
Does the body rule the mind
Or does the mind rule the body ?
I don´t know….
Under the iron bridge we kissed
And although I ended up with sore lips
It just wasn’t like the old days anymore
No, it wasn’t like those days
Am I still ill ?
Oh …
Am I still ill ?
Oh …
- Still Ill, The Smiths

Here’s how it works.

You are born two weeks before Christmas, in an infirmary they knocked down a few years ago. The last of four children (the ‘mistake’), you’re born pretty healthy. A normal weight, lots of bright orange hair and a loud cry. A very loud cry, in fact. A cry which didn’t stop for weeks on end, stretching into months.

The doctors work out you have an allergy to dairy products. Not an intolerance; a life-threatening allergy. You are taken off baby milk and put on soya, and the crying stops. Then comes eczema, covering your whole body from head to toe. Years of bandages and E45 cream and scratching.

The illness kept on coming.

Living with chronic illness is one thing. Living with an unexplained chronic illness is something else entirely. Although I have a diagnosis of fibromyalgia, I’m not 100% certain I still accept that fibro is causing all my symptoms. I’m not convinced I actually have fibro. When I was diagnosed, it was a relief because I finally had an explanation for all the fatigue and strange pains, but recent worsening of some symptoms and arrivals of new ones have made me wonder if perhaps I’m experiencing something else. Something which could maybe be treated, or which at least has a definite cause.

Fibromyalgia explains the muscle pains and twinges, but not the joint aches and trapped nerves. It doesn’t explain loss of bladder function or an entirely numb right leg. What if there’s a medical reason for all this, something which could explain the constant kidney and water infections? The cervical infections? The cold-sores? If there’s a name for it, I want to know it. I want to grab that name and fight whatever the hell this is, armed with knowledge about it.

But, for now, I simply don’t know what’s happening anymore. I can’t fight an unknown enemy.

My daily routine during the week goes like this:

Wake up between 11am and 3pm, usually by being shouted at by my mother to “get up and sort my life out”

Light a cigarette or spliff, depending on availability of either. My mother brings me a cup of tea with loads of sugar; I don’t have the heart to keep telling her I don’t take sugar now.

On  good day, I get dressed and washed. Bad day; it’s pyjamas and unbrushed teeth.

Choice of distractions mostly include: reading, wasting time in the deepest recesses of the internet, Bejewelled, The Sims, or a film. On a good day that list will also include knitting. On a bad day, it’s pretty much narrowed down to lying in bed with my laptop, surrounded by empty cans of Pepsi used for ashtrays and empty tea cups.

I never wanted to go down the good day/bad day route. I (perhaps foolhardily) believed that giving in to the concept of having healthy and unwell days was akin to becoming a slave to the illness, and I refused to go there. I never wanted to be the bed-bound invalid which I inevitably became.

Sometimes, it seems like a pointless existence.

I envy those with positive attitudes. Jealousy is an ugly emotion and I’ve never felt comfortable around it, but I truly do feel a touch of the green-eyed monster when I hear of people coping. The concept seems so alien. It’s not that I’ve never tried to cope – I tried my hardest for years – but I feel battered down and jaded by so many hospitals and tests, and I never did learn how to deal with it all. I’ve never been very good at coping; with anything. It’s my biggest downfall.

Two strong parts of my personality have a particular problem with my symptoms: my hatred of sympathy and pity, and my hatred of being accused of lying. Both affect me deeply, and you can’t avoid either when you’re always ill. Sympathy comes in waves, crashing on me and exiting again; utterly meaningless. There’s a difference between genuine concern (which I appreciate) and the all-too-convenient “oh, I hope you feel better soon” so many people mutter in my direction, before hastily cutting off contact with me. I won’t feel better soon, that’s why it’s a chronic illness.

Then there are the disbelievers. The ones who look at me slyly and say, “hmm, you had a cold last month”. The ones who turn their eyes to the heavens when I cough or sneeze. The doctors who look at me like I’m a particularly grotesque lump of dog poo on their shoe when I say the medication isn’t working or that I’ve been vomiting or been unable to move my neck for days. The keyboard warriors on forums who accuse me outright of fiddling benefits (it’s happened). My mother’s disparaging remarks about my “laziness”.

Along with this comes the fear of losing help from the government. In my emotionally confident times, I can convince myself that it wouldn’t be the end of the world, but the reality is it would be. I have a prescription pre-payment card, I have over-the-counter medications to buy, taxis for transport because I’m in no way able to deal with public transport right now, appointment after appointment.. how would I pay for these things? I’d have to get a job.

You possibly have a job. Most people still do, despite the news stories claiming that everybody is cheating the system. The UK would have you believe we’re all workshy spongers, buying 50″ LCD televisions to watch Jeremy Kyle on with our free money, going on holiday somewhere tacky and sitting around being lazy all day. The media paints an unrealistic picture of life on government handouts, making out that it’s a utopia.

The reality isn’t quite so sweet.

Sit still long enough and you’ll atrophy, emotionally and physically. You’ll lose all will to motivate yourself out of the situation and eventually you will accept nothing will ever change. You feel like the lowest of the low – a deplored member of a so-called broken society – and life becomes a fog of bad horror movies, cheap books, sleeping to pass the time and a constant sickening feeling for something more. Something other than a pseudo-existence.

Something else I envy (I really have to deal with the jealousy problem) is people who go to work every day and  who are able to do their job. I feel like I’ve been cheated somehow; that a vital part of being human has been taken away from me. Being a valued member of society doesn’t involve being stuck in bed for half the week or rearranging your music collection to waste a few hours.

You see; I’m ashamed. I can’t shake the feeling of inadequecy that being long-term unemployed brings. I feel like I’m somehow letting  the side down and wasting my life away while other people do their bit. It’s not a nice feeling – sometimes it pulls me apart – and as much as I try, I can’t see the positive in sitting at home all day while life carries on around me.

I will never forgive myself for leaving the bookshop. I had a job; even if it was voluntary. I know things weren’t working out and life with J was destroying me, but I should have held on. I had a purpose, and something to tell people when they asked what I did. For the only time in my life, I felt like I was contributing to normal society. It’s no small thing to suddenly find a niche were before there was only dull, empty space, and I miss those times dearly.

In my lifetime, I have amassed these diagnoses:

Dairy allergy/intolerance

Gluten, wheat, citrus and sugar intolerance

Clinical depression

Fibromyalgia

Irritable bowel syndrome

Sciatica

Polycystic ovary syndrome

Recurring pelvic inflammatory disease

Schizophrenia (no longer diagnosed)

Anorexia

Bulimia

Disassociative disorder

Borderline personality disorder

Asperger’s syndrome (no longer diagnosed, and a story for another time)

Major anxiety disorder

Severe eczema

Recurring urine infections

And I’ve been tested for:

Endometriosis

Thyroid disorders

A pituitary gland tumour

Coeliacs disease

I suppose we can now say brain tumour, after my waste of time neurologist appointment.

Each of these diagnoses and tests have required appointments; most more than one. I have seen hundreds of doctors and waiting rooms in my lifetime. I know my local hospital inside-out. I’ve had things taken out of my body, tissue lasered away, probes stuck up me, ultrasounds and MRIs scan me. I’ve had X-Rays, a CAT scan, a EEG. I’ve had lights shone in my eyes, I’ve pissed in a thousand tiny jars, I’ve had more blood tests than I can remember. I’ve spent hours in A&E. My heart has stopped in a hospital bay. I’ve been ‘hhhmmm’d’ at more than I care to mention. I’ve been patronised and dismissed, only to be back in hospital days later. I know how it feels to ride in an ambulance in gas and air. I know how gloomy the high-dependency unit is.

My life has revolved around doctors, specialists and hospitals. My paper medical notes are huge and tattered from being sent around the Northwest on a regular basis.

And yet, very few answers have been forthcoming. There was a time when I believed that one day the tests would stop, but I confess to losing that faith now. It’s a hellish never-ending cycle, and yet some people – the disbelivers – think that this is a desirable life. That I would rather live like this than work.

They’re very wrong.

I didn’t ask for this.

About these ads

56 Comments

  1. One of my close friends – who is a relatively new friend – has fibro and I’m glad you posted the links so I can find out more about it. She’s having problems with the medication not working (she gets a new set and it works for a bit and then it stops working after a couple of months) and is understandably very fed up with it all, as I’m sure you are too.

    I can certainly empathise with the problems – I personally hate being ill and the worst I get is a cold, although they can be two-week colds that mean I spend at least three days in bed when they’re bad, and through that, while I know that I can and I will get better, I’ve gained an insight into what it must be like to have something that means you’re that tired all the time.

    The sheer fact that you post about it, that you carry on, shows what an amazing strength of character you have. You could just say “sod it, I can’t be arsed to do this” but you do, you write about your experiences and share them with the world. And your poetry is pretty amazing too – have you considered trying to get it published?

    • Tell your friend that what she’s experiencing is normal, and to keep trying. Something will work, eventually. It’s hard not to get fed up.

      I’ve had two poems published as part of national competitions and a lot of people have told me that I should publish my poetry, but to be honest I just don’t have the balls, or the faith in my ability.

      Two week colds sound horrendous; mine last a week at the most, and even that knocks me out. I don’t envy you that, at all.

      • I’ve suggested to my friend that she reads your blog but I don’t know whether she will or not. I hope she does; she needs to know that she’s not alone with the struggles to make sure it’s the right diagnosis and the right medication.

        Another of my friends is part of the Chester Poets Society and they’ve self-published a book; I know the idea of joining that sort of a group must be as scary as hell, but it could be worth looking into it or even starting your own poetry group, to put the work out there and to get the support and positive feedback on your work.

        I hate getting colds but at least I know it’s *just* a cold and that as life goes, I could have it a hell of a lot worse. Plus most of my colds I reckon are self-inflicted as I know I don’t eat as well as I ought. Your comments about GPs and so on not being careful with their hygiene and keeping germs to themselves are valid points – everyone should take note and actually be more careful themselves with things like hand washing and so on. Not to the point of OCD, but simply to the point of respect for everyone else. And that’s why I agreed to take myself home with the current cold when I arrived at church on Sunday morning and was told I should go back to bed and not stay at the service.

        • I am part of a few online poetry groups which has helped a lot; both with the comments on my writing and the motivation to write new poetry. I had a massive writer’s block lasting a few years, but I think I’m breaking out of it now. I suppose I worry that my poetry is too personal, and a bit too morbid for other people to want to read. I don’t know if I could cope with rejection when it comes to publishing, either.

          • There are enough people out there who enjoy the morbid. There have to be. Otherwise how the hell did Twilight do so well? ;)

            I think that’s why the Chester Poets went down the self-published route, but that can be expensive. Maybe, though, in time, you’ll feel brave enough to face the rejection. I’m not sure who publishes poetry anthologies (I work for a bookshop; but it’s an online Christian bookshop so obviously my area of knowledge is a bit limited) but if I find out any info that might be useful I’ll pass it on to you.

  2. I’m reading your post whilst flat on my back, in my own bed. It’s 1103 and I’m on my third (forth?) day of THIS illness, caught from my pain management doctor who I saw on the 29th. He told us (after shaking hands!) that he’d been sick all Christmas, and now I have it. I am literally ill at least once per month, mostly from having to go, everything month, where the rest of the sick people are.
    I too long for the days when I worked, when I made my own money and could hold my head up. I find that once I became sick with one immune system issue (fibromyalgia), that others start showing up, as I now also have Lupus. I tell people it’s my karma, and that I was an axe-murderer in a past-life… I must have been very bad!

    Xox

    • Haha, I’ve wondered about karma; lord knows what I did in a past life! I was probably Genghis Khan or something.

      I’m sorry you’re feeling ill; what an idiot of a doctor. Thinking about it, my GP often has a runny nose… maybe I should start blaming him. Lupus is something I’m trying to find out if I have… along with other things, the symptoms fit and there has to be an answer out there somewhere.

  3. One thing I didn’t see on your list is “Chronic Fatigue Syndrome” which mimics fibro. My friend went through the battery of tests and this was finally the diagnosis. If you want to talk to someone who’s gone through the hell, let me know. She’s from Cornwall. And she’s really sweet. It might help to talk to someone who’s been through it.

  4. Thank you for this post. It made me realise how lucky I am.
    I hope that one day you find a way to manage your symptoms. Not fix, just somehow circumvent them enough that you can live the life you want.
    Peace and love!

  5. If there is any possible way that you can, cut yourself some slack over the green-eyed monster. You know what? You have been cheated. And the hardest thing to accept: it’s ourselves who do the cheating — our bodies, our brains. And this situation leads us to hating the one person we should love — ourselves.
    Trouble coping can be an uncommon, but more easily treated situation, if yours is what mine was. A dysfunctional adrenal system. Since I began taking a replacement steroid hormone, My illnesses have not abated, but some of the despair has. Check it out on the internet, and see if the test (a simple blood test,) is something you should talk to your doctor about.
    Sending you love and affection and wishes for the very best for you!

  6. Hi, I am the sweet friend from Cornwall, and can identify with so much of what you’ve written. It took me eight long years of being told I was depressed before I finally got a diagnosis of ME. Eight years of anti-depressants, therapy and Diazepam.

    Your symptoms sound very much like ME – a similar illness to Fibro. In this country they tend to ask, ‘Which is worse, the pain or the fatigue?’ If your answer is pain, they say it’s Fibro. And if you answer fatigue, you’ve got ME or Chronic Fatigue Syndrome. Sometimes you’re lucky enough to get them both. I wonder if that’s the case with you?

    Have they ever tested for MS? The collapsing legs could be that, although my muscles give way, too. I can’t believe your stupid, ignorant, patronising neuro bloke. Well, I can, because I’ve been there, but to say you’re too young for a scan is just ridiculous.

    I hate to say this, but you have to keep fighting. I honestly believe we’re never sent more to deal with than we can handle. And only the best, strongest pupils get the hardest lessons.

    I love your writing style; it’s so honest and fresh. Have you ever thought of writing a book, or turning your blog posts into a book? You’ve given a beautiful account of what you’re experiencing and how you’re feeling.

    Come join our little blogging community. We support each other through this quagmire of crap they call life.

    Cornish hugs!

    • Hello, nice to meet you! Firstly, I’m incredibly jealous that you get to live in Cornwall; it’s a gorgeous place. I’ve only been once, but I’d love to visit again.

      Eight years of Diazepam sounds horrific; it’s far too easy for doctors to hand out benzos without considering the long-term implications.

      I’d say it’s a perfect combination of the both – pain and fatigue – which affects me. What makes me question the diagnosis of fibromyalgia is the fact that it’s mostly joint pain, rather than muscle. I mean, I do get muscle pain (like a slow, burning ache in my arms and legs) but the joint pain affects me much more. It could well be the case, but there are still things which don’t quite fit. Perhaps I’m being idealistic, wanting a cosy answer for everything in one package.

      And thank you. It’s been suggested before that I write a book, and that I should publish my blog… but I’m not sure how I feel about that. I don’t think I’d have the motivation or the courage.

  7. I haven’t been diagnosed or tested for nearly as many things but have had my fair share of physical and mental illnesses. I once too had a job and felt like I was a contributor, things got out of control and the doctors got me on disability. I often fear I will never work again, and I know the feeling it is one of the worse. They have labels for me none of which I completely ‘fit in’ or agree who heartily with. From now on it’s just been a focus for me to deal with the symptoms and say fuck whatever they write in their charts.

    • Thank you for valuating my feelings; sometimes I worry that I’m being selfish wanting a job when there are so many people out there who hate their work. I suppose you always want what you can’t have, and (along with straight hair and a naturally skinny frame) I’d kill to be able to go to work every day. I had hopes, you know? Dreams. I wanted to do stuff when I grew up.

      I like your attitude. For me though, I want an answer. I suppose I’ve got one of those brains which won’t accept not quite knowing. I want to know the best ways to fight this. I’m sorry you’re also going through all this; it’s not right, is it?

  8. I’m convinced there’s just a lot that doctors don’t know. There’s a show on cable called “Mystery Diagnosis” and people go through what you are going through to find the answers to sometimes very rare and often unheard of illnesses. But one time they were portraying a sick person and had gone through her list of complaints and I blurted out her diagnosis…it took the doctors years to figure it out! Also, doctors have screwed up judgments about people too. If they can’t figure out what’s wrong and it doesn’t fit into their neat little boxes of routine ailments…well you’re out of luck and dismissed. Doctors are flawed human beings too.

    I really feel for you and your predicament. The lack of compassion around you is astounding! I don’t know if your insurance or medical benefits would cover alternative doctors but you might try that path if you haven’t already. Go find a reputable naturopath, osteopath or someone open to treating you as a whole…not one symptom here or there. Obviously, since birth, you have been challenged greatly…I wish you well on your journey to health. And I hope by sharing, you will find some relief from your frustration.

    Oh, and by the way, I have accepted your kind awards for me. Because I have received many in the past, I bypassed some of the rules (I sure hope you don’t mind). Here is the link to my blog where I mention you and your blog and your kind nominations: http://bodhirose.wordpress.com/2012/01/09/awards/

    Thank you!
    Gayle ~

    • Of course I don’t mind you bypassing the rules; I did ;)

      Sounds like I’d love Mystery Diagnosis, I’m a sucker for that stuff. I like diagnosing people and being proved right – it’s a smug feeling :D I don’t have insurance (there’s no way I’d get it in the UK, and can’t afford it anyway) but you can get alternative treatments on the NHS. I’ve had acupuncture, which helped but getting home was becoming a difficulty (relaxation plus public transport, argh). I’m going to ask to see an osteopath, if I can, and also demand to have more blood tests. Something’s not right, and I’m determined to find out what it is before it drives me crazy.

      I know doctors are flawed; I think it’s that knowledge which has stopped me going utterly apeshit on one of them before now. I don’t help myself; I find it hard to explain my symptoms properly, even if I write them down, and I have a horrible habits of downplaying how I’m feeling when a doctor asks me. I need to work on that, and I’m wondering if there’s perhaps a form of therapy available to help me get my symptoms across.

      Thanks Gayle, you’re a kind person.

  9. Hi. I have been following your blog for a short time now and reading your blogs and believe me when I tell you that I feel your pain. I have many but not all of your symptoms. I am English but live in the US. I have (among other things)bi-polar disorder, major manic depression, anxiety, fibromyalgia, chronic fatigue syndrome and they are now looking into “Narcolepsy”. I have had slurred speech, memory loss, and when I say memory loss, I have conversations with people and don’t remember ever speaking to them. I call them “blackouts”. I have fallen asleep several times during a therapy session but carried on talking and then waking a split second later and questioned what we were talking about. I have fallen asleep while driving on the highway and been awakened by a car horn as I was about to go into their lane at 70 mph. As far as the numbness goes, I have that in my hands and had numerous tests carried out. I have MRI’s, blood tests, etc. etc. Fibromyalgia is when the nerve endings in your skeletal muscles do not fire the correct feelings to your brain and in return your brain interprets that you are indeed in pain. In most cases, chronic fatigue syndrome is all part and parcel of the same. If I may ask, what meds do you currently take? If you would like to email separately that is fine. I just wonder what meds they are giving you for your symptoms. I have been switching meds for many years and seem to have hit the nail on the head recently and feeling better. I will say that my doctor gave me a steroid shot and I slept through the night, pain free for the first time in 18 months. It was like heaven. I slept like a log and almost cried with gratitude the next day.

    The facts are that severe depression can do major damage to your body, mind and spirit. It is not imagined. it is real and unless you get a doctor who is on the same page as you, it will be hard to be treated correctly. I am so sorry for what you are going through. All I can say is that I am extremely proud of you and the fact that you haven’t checked out of life with all you have been through. I know what it feels like to awaken every day and talk my self into getting up and functioning without ending all the pain both emotionally and physically. Be proud of yourself too.

    • It sounds like we’re experiencing similar things. I also completely forget conversations, sometimes only hours after. I never know if I’ve called someone, I have to check my records because I have no recollection of the conversation. I have to write everything down, because I’ll forget. I’ve also had those blackouts – I’ve been told I’ve spoken, but have no memory of it. It’s like I just disappear.

      I take amitriptyline for the ‘fibro’, although I’ve not taken it for a while. I don’t like how it makes me feel during the day; weak and trembly. I’ve been taking steroid pills for eczema recently, and they have the wonderful side-effect of calming all my muscle and joint pain. Like you, I could cry with gratitude; sleeping properly for the first time in years is a wonderful feeling. I can carry shopping bags again and walk up stairs without cramps. It’s a shame they’re so damaging to the body, because I’d stay on them forever otherwise. I have four weeks left, so intend to make the most of it.

      I do wonder if all these symptoms are perhaps part of some unknown disorder, and that’s why it’s so hard to find any concrete answers.

      Thank you so much for your comment; it means a lot that you’d take the time.

      • Try asking your doctor about Effexor ER or Venlafaxine ER (generic). It is a SNRI and it works really well for me and this is after taking many, many different kinds of meds. It can work well with Wellbutrim (Bupropion is the generic). Here is the link for more info: http://www.dr-bob.org/tips/venlafaxine.html. It is very informative and the side effects are nowhere near as bad as some of the others. When something is NOT working for you then you have to tell your doctor that you have been doing some research and what does he feel about _____________ and if he doesn’t seem to be too against it, then stand your ground. You know your body. All I know is that I started on Effexor ER and it made a difference for the first time in years. Now it may be called something different in England. Keep your chin up. You’ve come this far.

  10. You have every reason to feel cheated – you have been. NOone asks for a hell like this. I do relate to feeling like you have been left behind, your life is being wasted in bed, in pain, sick, etc. I’m nowhere near your level of ill, but I too struggle every single day. I try and be positive – it’s more a front to appease others. I’m sorry that people are so mean to you in the way they react to your illness. Especially those who are meant to be helping you. I admire you because despite living this endless hell you do keep getting up day after day, you do keep fighting. That is amazing in itself – you are survivor. Keep fighting.. i don’t know what else to say. I just wish there was some way I or anyone could help you feel better. And I hope and pray that this eases and comes to an end so you CAN start living as you deserve to xx

    • Thank you; it’s a strange comfort to be told I have a right to feel this way. I tend to feel guilty about it, since everyone has problems and I’m certainly not special in that respect. I think it’s a case of the illness in general getting me down, not the levels of sickness. I always feel like I have a cold, and a bad one at that; which wears you down over time. I hear you about the front; I think I’ve given up pretending now though, it’s become too difficult to smile when all I want to do is be healthy for one day in my life.

      A survivor? I like to think so. Thank you so much for this comment, it really helped x

  11. Pingback: Tell me about yourself award « Halfway Between The Gutter And The Stars

  12. I know I don’t know you, but *hugs*. I know it’s really hard. I’ve had close friends tell me that they thought I was using Fibro for attention and I didn’t really have it. I had a part time job for 2 of my years with Fibro before I finally became too sick and unreliable to stay, so I quit and haven’t had a job for almost a year now. The thing that gets me the most too is the jealousy of ‘normal’ people and the inadequacy of not being able to contribute to my household income and to society in general. It’s a tough road, and being positive is really hard, but it’s better for you. I wallow all the time, but it’s the moments when I get past that that I can enjoy life a little again. Yes, I’m still in a lot of pain and my fatigue sits at a 13 out of 10 everyday, but I can still sit down with a couple of friends for a few hours and pretend I’m not sick all the time. Hang in there :)
    Also, here is a GIANT list of Fibro symptoms. I believe a lot of what you are going through is on the list…I could be wrong. But give it a look!
    1. PAIN- in the muscle: often described as aching, burning, throbbing, gnawing, shooting, tingling. Almost always exacerbated by exercise and may or may not be present at rest. Can be migratory and differing from day to day.

    2. FATIGUE- From feeling tired to exhausted and requiring rest periods during the day.

    3. SLEEP DISTURBANCE- not being able to fall asleep and or able to stay asleep. Unrefreshing sleep patterns ” feels like I haven’t slept.”

    4. PARESTHESIA- numbness or tingling. ( non dermatomal)

    5. DEPRESSION- most often reactive as with chronic pain condition.

    6. ANXIETY- may include panic attacks.

    7. PERSONALITY CHANGES- usually a worsening of a previous tendency.

    8. MOOD SWINGS

    9. SUBJECTIVE SWELLING OF EXTREMITIES- i.e. feels swollen but no-one can find anything.

    10. HEADACHES- tension and or migraine.

    11. COGNITIVE FUNCTION PROBLEMS: calculation difficulties, memory disturbances, spatial disorientation, difficulty with concentration, short
    term memory loss.

    12. FREQUENT UNUSUAL NIGHTMARES- or being unable to dream.

    13. DYSTONIA- stiff muscles due to involuntary contracture. Difficulty in moving tongue to speak.

    14. FREQUENTLY SAYING WRONG WORDS

    15. BURNING SENSATIONS

    16. LIGHT HEADEDNESS- “Fibro Fog”, spaced out, cloudy.

    17. MORNING STIFFNESS

    18. EASY BRUISING

    19. MILD BUTTERFLY RASH- (LUPUS TYPE) May be photo sensitive.

    20. NEUROGENIC INFLAMMATION- rashes, may be severe itching. NI causes the symptoms and signs of Dermatographia.

    21. DISEQUILIBRIUM- Vertigo

    22. MUSCLE WEAKNESS- variable with no “objective” abnormality to formal testing.

    23. SCIATICA- like pain

    24. PHOTOPHOBIA- Intolerance of bright lights.

    25. ALTERATION OF TASTE, SMELL and HEARING.

    26. LOW FREQUENCY, SENSORINEURAL HEARING LOSS.

    27. DECRESED PAINFUL SOUND THRESHOLD.

    28. TINNITUS- ringing in the ears.

    29. OCCASIONAL EXAGGERATED NYSTAGMUS- involuntary rapid movementof the eye ball.

    30. CHANGES IN VISUAL ACUITY- impaired function of the smooth muscle used for focus as well as skeletal muscles for tracking.

    31. INTOLERANCE OF ALCOHOL

    32. ENHANCEMENT OF MEDICATION SIDE EFFECTS

    33. INTOLERANCE OF PREVIOUSLY TOLERATED MEDICATIONS

    34. WEIGHT CHANGES- usually gained due to the lack of exercise through pain and or tricyclic antidepressants

    35. RESTLESS LEGS

    36. HEIGHTENED AWARENESS- of symptoms of HYPOGLYCEMIA 9 when blood sugar falls)

    37. POSSIBLE CARBOHYDRATE INTOLERANCE

    38. SYMPTOMS OF IRRITABLE BOWEL SYNDROME (I.B.S.)

    39. HEARTBURN- secondary to I.B.S.

    40. SUB-NORMAL TEMPERATURE

    41. NIGHT SWEATS.

    42. SENSITIVE TO TEMPERATURE EXTREMES

    43. HEART PALPITATIONS

    44. BREATHING DIFFICULTIES

    45. HEART MURMUR-Mitral Valve Prolapse appears to be more symptomatic in FM than normal.

    46. IMPOTENCE- reactive and occasionally.

    47. SEVERE PREMENSTRUAL SYNDROME

    48. FREQUENT VAGINAL YEAST INFECTIONS.

    49. MUSCLE SPASM- twitching.

    50. NON-CARDIAC CHEST PAIN- which may simulate cardiac disorder.

    51. PELVIC PAIN.

    52. ABDOMINAL WALL PAIN.

    53. DRY EYES AND MOUTH.

    54. TEMPOROMANDIBULAR JOINT DISORDER- usually due to abnormal muscle tone.

    55. RAYNAUD’S- like symptoms.

    56. CARPAL TUNNEL SYNDROME-possible related condition.

    57. HAIR LOSS-secondary to psychological stress from FM.

    58. VULVODYNIA- Vulvar discomfort or pain, burning, stinging and irritation.

    59. PLANTAR ARCH-or heel pain. Exacerbated in FM.

    This list of symptoms has been correlated by the Arthritis Foundation S.A.

  13. Hmmm….I’m lost on your blog LOL. I tried to find my other comment and can’t find it now…..but I wanted to let u know the following–you have NO idea how much we have in common….it is crazy. As I was reading, I felt as though it were my thoughts and feelings being poured out in black and white.

    • It’s amazing how many people say they see a lot of themselves in my writing; for the longest time I really did think it was just me. If nothing else, blogging has helped me learn that I’m not in any way alone, and that sharing experiences can only be a helpful thing. Don’t worry about the comment; half the time I don’t know where my own are! Thank you very much, Secret.

  14. Pingback: IRONIC « BLOG WITH NO TITLE

  15. I only wish I knew what to say to you, to help you … please know that you’re not alone. Post brought tears to my eyes :( I’m so sorry you’re going through of all this … have you sat down with your mother and talked to her about any of this? Hurts bad when people judge someone as ‘lazy’, etc, just wish there was more understanding. xxx

    • I think you said it quite well Jenzy.
      “Hurts bad when people judge [you] as ‘lazy’, etc.”
      I take a reduced load in college and I have a bad habit of thinking that I’m lazy. I mean just ME thinking about MYSELF.Thankfully my colleagues at university have been, in general, if not understanding than at least non-combative.

  16. Fibromyalgia is actually well treatable – not just the symptoms but the actual illness process, with low dose naltrexone for example. As several other commentors have suggested, you could have CFS/ME, which is similar, but also typically features immune dysfunction (which could explain the recurrent infections). It can also be treated and again low dose naltrexone is likely the best option. Have you been tested for immune deficiencies? The problem is that there are so many different ones and usually they only test for the more typical ones, if at all.

    Both fibro and CFS/ME can feature joint pain, but it usually isn’t one of the main symptoms, so I wonder if you could have Lyme disease. It causes symptoms similar to fibro and CFS/ME, but joint pain tends to be more common and more severe. It can also cause psychiatric symptoms, such as depression, anxiety and even psychosis. Nerve symptoms are also typical.

    Of course it is possible it is something more rare. Could be something autoimmune too – and for autoimmune diseases low dose naltrexone is also the best treatment option (it can also help Lyme disease should it be that, but antibiotics etc are usually more effective).

    • Maija, thank you for the information on naltrexone. I’m dealing with fibro myself and have a friend fighting cancer, who I have just sent the information on this medication to. It sounds very promising…and the best part…very little side effects…that’s what keeps me from going on other drug regimens for fibro. Thanks again. Gayle

  17. I would hope that the several individuals who have posted about what the writers illness is would remember that the writer has been treated all their life. I know doctors are flawed. I’m well aware that they can misdiagnose and misunderstand and make other sorts of mistakes. But they’ve had a good amount of time and I assume most posters have had, oh, 10 minutes or so and think they can diagnose from afar?

    I don’t know. I’m just a student of mathematics, I don’t study medicine. I don’t know much about anything related to psychopharmacology. I’m certainly not the world’s expert on anything. Maybe one of the posters is a real Dr. House.

    I just hope we can approach this with a good chunk of humility.

    Sorry that was just bugging me.

    • Yeah, I’m not a doctor. I am a medical writer who has written two books about commonly misdiagnosed and/or otherwise poorly known illnesses, though, and I have managed to find proper diagnoses for numerous people who have seen dozens of doctors without success (that is, diagnoses they have later been able to verify with actual doctors. I also know people who have seen doctors for up to _decades_ before they have got the correct diagnosis. With many autoimmune conditions the average is 7-13 years. For one friend it took no less than 39 years to get her CFS/ME diagnosed.

      In this case, the author’s symptoms are fairly non-specific and there are likely dozens of more common and who knows how many rare conditions that they could represent. But people “brainstorming” ideas could lead to the right direction, something her doctors haven’t considered or something her doctors have dismissed out of ignorance (that happens a lot!).

      • Oof, my first blog disagreement!

        Thanks for both of your comments. I appreciate the different viewpoints, and agree with both of you really. justamathguy does validate my feeling towards people making suggestions as to what’s wrong – it drives me crazy at times – but I also know that if I post online about my symptoms, I leave the field open to suggestions and advice.

  18. Thank you so much for your honest postings. Your story sounds all too familiar to mine and I am constantly struggling with finding answers. I was just diagnosed with Fibro and have had 5th Disease in the past. I am learning how to live with and manage my pain and have been very blessed to have met an herbalist last year who has helped me immensely. It seems that a radical diet change and taking herbs daily does more wonders for me than anything else conventional doctors have done. I also don’t get pity from her but encouragement to fight. I too am tired of being “hmm’ed” at by doctors. Keep trudging on–I’m rooting for you!

    • I had to Google 5th disease; did it affect your joints then? Sounds like something I wouldn’t want to get.

      I’m sorry you’re also struggling, it can be such hard work at times, and I’m glad you have an understanding herbalist. I’m trying to go down the ‘as little treatment as possible’ route until I can find out what’s causing all this. Thanks :)

      • Yes, 5th disease gives you temporary arthritis, chronic fatigue and suppresses your immune system. It’s like having mono (which I’ve had too) but with arthritis. I was 22 when I was diagnosed and had one of the highest levels of it in my blood than any other case my doctor had studied. At least he knew what it was because most internists don’t even know what the heck it is. However, I mostly healed the nasty virus through food–changing my diet and cleaning out my system with lots of cleanses and organic food. It took about a year, but I was (mostly) pain free for a good 2 years until I went through lots of physical and emotional trauma. Then the pain came back full force and I thought it was 5th Disease again until just a few weeks ago, I found it it wasn’t.

        So anyway, meeting my herbalist last summer has literally saved my life. She has helped me not only detox my body–which, by the way, can take up to a year even eating clean (I didn’t know this before), but she’s helped me immensely with my emotional traumas and releasing them. It’s amazing how our emotions can physically affect our bodies at the cellular level. As I’m working through all this and connecting with others who have suffered/are suffering, I am inspired to do more research, become a certified nutrition counselor, become trained on herbal remedies and just plain reach out to those with health issues and help them find a better way. It’s been very rare to have any understanding conventional doctors as I’ve gone through all this stuff and now that I’m able to seek out alternatives, I find that the alternative methods have been far more permanently effective than any other thing I’ve tried. While I continue my journey, I will be documenting everything and I’ll of course be thinking of you as you go through your journey. Perhaps I will someday be able to find the best cure for all the unexplained Fibro pain we experience and then I can share it with you. =) *Hugs*

        • Ah see, I struggle with the idea of detoxing. My scientific mind says that the body detoxes itself, but I don’t think it can do you any harm to try. I know in the past when I’ve cut down on certain foods and drink (not detoxed, just hugely cut back) I have felt better, but I’m not convinced that a proper detox is the best thing for me. Still, the body is a strange thing and I wouldn’t rule anything out, so thanks. I have no doubt that organic food is better for you, I try to eat as much of it as I can.

          I do agree that alternative doctors seem more willing to see this sort of thing (fibro/5th disease etc) as a real issue, whereas conventional doctors seem to almost rush you out so they can get on with treating ‘real’ patients. Conventional medicine is great for treating broken legs, but when it’s an all-over body thing with no clear cause… well, I just think they should take it more seriously than they currently do.

          5th disease really does sound awful, and it’s interesting that I’ve never heard of it – I’ve become a self-made expert on these things – you’d think there’s be more publicity. There should be.

  19. You know, I think you could look for something to do at home that would give you that sense of purpose that you want and it would help keep you distracted/occupied.
    First off, I think you write really well. You certainly seem to connect with a lot of people reading your blog.
    So my first suggestion would be – have you considered writing short stories or poems or doing little write-ups and sending them out to magazines and entering contests? If you win or get published, it’d be really cool!
    My second suggestion is somewhat related – You could send around photos taken by you too.
    How about taking some online lessons for something that interests you, Russian, you said? You’re afraid you’ll give up? But if you find something free, you won’t be losing any money and it’ll just be giving you something to look forward to. :)

    Love and hugs

    • Ah, you’re echoing all the advice people keep giving me. I’ve been trying to keep busy over the past few days and it really has made a difference; it’s annoying when you know something helps, but you can’t motivate yourself to do it.

      I’ve had a couple of poems published, but a long time ago. I suppose I don’t have the confidence to send things off to publishers because of the inevitable rejections. I don’t cope well with rejection. Photos? Blimey. I never considered that; I only use a little point and shoot most of the time. I do have a Nikon DSLR, but it’s too heavy to carry around, and I haven’t got a tripod. It’s a thought, though. Cheers!

      Looking online is a good idea… I’m not sure I’d learn Russian well online though, I work better with people. Worth a try I suppose. Love back.

      • Shouldn’t the fact that you feel a lack of purpose when you aren’t doing anything, just whiling away your time, be motivation for you to do something that helps?

        Hmm, if you don’t cope well with rejection, you could ask someone to be your ‘agent’. Such as maybe S. He could send off your poems and you need not really hear about the rejections, just the good news. I don’t know, it’s the only way I can think of, for you to not handle rejection yourself.

        I doubt photography contests discriminate against point-and-shoots. It’s the photo that matters, not the camera.

        You can look online for anything, it need not be Russian. Maybe you could look up new hairstyles online and try them! You know, DIY type videos and what not.

        • It’s hard to explain why the motivation isn’t there, even to myself sometimes. It’s like… if you don’t use something often enough, you lose it, and in my case I lost the ability to appreciate what I need to do to gain a sense of purpose, and in some cases it’s been impossible at times while I’ve been stuck in bed.

          The ‘agent’ idea is a very good one; thank you. I hadn’t thought of that. I’m sure someone would do it for me. I’m not 100% sure I’d want my poetry published, because it’s so private (online is different, in a strange way) but thanks for the suggestion, it’s certainly something to consider in the future.

          As for photography contest, I suppose I’ve just never thought of it before. It’s just something I do without really thinking about it – holiday snaps and that – and the idea of publishing them or entering them for contests never really entered my head before. Again, thank you. It’s something to think about.

          New hairstyles? LOL. I trained as a hairdresser (level 2 NVQ) and if I never see another head of hair again, it’ll be too soon ;) I’ve been looking at some stuff online though, things to do with advocacy, which has sparked a few ideas off. Fingers crossed.

  20. wow, you are an amazing writer.
    I read the post but haven’t read others comments yet, I am a bit rushed on time so I shall do that later, so sorry if i am repeating anything.
    I am sorry you have gone through so much pain – and I can very much relate. I can’t believe the overlap in diagnoses, i think that i was diagnosed with ALL that you were aside from the skin condition. (I also had my diagnoses of autism spectrum disorder retracted.)
    I like this post, it is informative well written and has heaps of personality. Ill be following.

Send me love.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s