Tag Archives: Fibromyalgia

The 347 day battle rages on

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I am now 11 months in to my journey with scleritis.  I never in my wildest dreams thought for one second my eyes would still be flaring.  I thought a few weeks on the meds and it would all be over.

Approximately 347 days later I still have severe eye pain, redness, photophobia and swelling around the eye, I always look like I have been punched in the face.  I don’t want to look people in the eye when I am talking to them in case they think I have been bashed up.  Some days are worse than others but it’s a constant no relief kind of pain of varying degrees.  The pain of scleritis is intense and relentless and unfortunately chronic headaches come with the eye pain.

I have been admitted to hospital, been on steroids and chemotherapy drugs, had many eye injections and had loads of tests and they are no closer to finding a cause or a resolution.  The next step up from the immunosuppressant chemo meds are biologics.  Biological products often represent the cutting-edge of biomedical research and, may offer the most effective means to treat a variety of medical illnesses and conditions that presently have no other treatments available.

I am HLA-B27 positive which is a genetic thing that makes me predisposed to getting autoimmune diseases like scleritis.  There may not be an underlying cause but my GP feels that there will be something there because whatever we throw at it doesn’t fix it.  It also brings in to doubt my fibromyalia diagnosis ….. are these symptoms part of an underlying disease and not fibromyalgia at all?  I think it probably is and they just haven’t figured it out yet.  Wish they would hurry up and find something I am so over the pain every day, not to mention that my eyes look a mess.

Unfortunately I also have corneal neovascularization in the left eye, which means I have blood vessels growing into the cornea.  The cornea is meant to be clear so the blood vessels are causing hazy vision almost like a cataract.  This means that I have to wear my scleral lens in the right sore eye to be able to see (keratoconus has made my vision extremely bad 20/450).  Not ideal to wear a lens in a sore eye but I have no choice I can’t afford to take 347 days off of work!

Fortunately throughout this journey my mental health has stayed pretty stable, could be a whole lot worse!

All I can do at the moment is continue with the painkillers (endone – oxycodone) and try and get through each day one at a time.  I have a feeling that this journey is going to go on for a while yet.

Chronic Pain Is Wearing Me Down But I Am A Warrior!

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I like this quote.  As a person who suffers with chronic pain every day it feels real to me, I can really relate.

Every day I go to work and put a smile on my face when inside I am crying in pain.  Some days are worse than others but I have some level of pain every single day without a break.  It really starts to wear you down.  I often moan a bit at work, but my colleagues have no idea of the pain I am in every day.  I get up in the morning and put that brave face on and it stays there for the duration.

My partner is amazing, even when I am trying to put a smile on my face she knows when I’m not doing so well.  Like the quote says she must see it in my eyes.  Oh yes, the moaning out loud probably gives her a clue too!

I rely a lot on strong pain killers but do realise this shouldn’t be a long term solution.  I often try to find other solutions to my pain but giving myself a pep talk and practicing mindfulness doesn’t really cut it when I am laying there in agony.

I try to take it one day at a time.  I used to fret and worry about how long this illness would last but now I know that there is no value in that it just makes me depressed.  Now I just get through each day and relax in bed at night knowing I have conquered another day.

This morning I am sitting in a coffee shop enjoying a skinny cappuccino whilst writing this post.  A positive thing to come from this is the realisation that I am much stronger than I ever give myself credit for.  I don’t let my pain stop me doing things and I live a full and very happy life.  I am a warrior!

Can You Tell When You Are Depressed?

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I have been thinking about this a bit lately because I have been depressed on and off. Once upon a time I couldn’t recognise when I was depressed, I just was, but now I can.  I don’t know what the change is but I am now much more aware of my moods and feelings and as a result can act on those feelings to try and bring my mood up before it gets too low.

So how do I know that I am depressed?  Two things stick out at me.

When I am depressed I don’t take care of myself.  I can go all week without taking a shower. Gross I know but I am told that is extremely common in depression.  It just takes too much energy that you don’t have to get yourself out of bed and in the shower.  Luckily this doesn’t happen too often!

When I have a normal mood I sing in the car.  I love my radio station with the crappy pop songs that I can sing along to in the privacy of my car.  No one else can hear me so I blast it out at the top of my voice.  I think I sound great but I also think I am a little out of touch with reality!  When my mood is down I don’t sing.  Even when a catchy tune comes on that I love I just can’t summon up the energy.  With depression car journeys are silent.

That’s how I know when I am depressed.  If I know I am getting depressed can I stop myself?  Sometimes, not always.  If I am just feeling a little blue there are things I do to help me snap out of it and stop me sinking further down.  The main one is journaling, or in my case writing this blog.  I find it so useful in helping to manage my depression.  Just getting thoughts and feeling out there is very cathartic and really beneficial to my wellbeing.

If I am more than a little depressed it’s not so easy to drag myself back out of it, but by using journaling I can usually stop myself sinking so low that I’m at the point where I can’t get out of bed.  I usually function pretty well even with depression.

One day I would like to wake up and get out of bed and feel well.  I can’t remember what that’s like.  Every single day of my life I get up and feel ill.  It might be the aches and pains of Fibromyalgia, headache or sore eyes.  Every day there is something and it’s really starting to wear me down.

I feel better just from writing this so journaling really does help to regulate mood – give it a go you might enjoy it!

Bipolar & Chronic Pain – Getting a Grip on it.

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For 6 months now I have had chronic eye pain.  It’s really starting to wear me down and affect my mood and my quality of life is suffering.  As each day goes on I can feel myself getting more depressed and a whole lot crankier.  I can’t see a light at the end of the tunnel, it’s going on and on with no end in sight.  Sometimes it is both eyes, sometimes just the left or the right, there is no pattern to it but it is always there nagging at me.

When you have normal moods it’s hard enough to deal with chronic pain day in and day out, so imagine how hard it is when you have mental health issues to deal with too.  It totally messes with your head.  As a person with bipolar and chronic pain I sometimes feel like I am losing the plot so I have been looking into ways to manage pain effectively to make life a little easier on myself and anyone else who may read this.

It’s not easy because the pain is there no matter what I do.  I can’t take endone (Oxycodone) permanently as my doctor will only prescribe them during a really severe flare up, so I ration them and use them only when I am feeling like I am not coping too well.

So what can I do to help myself to alleviate pain?

Painkillers

Take painkillers responsibly according to your doctor or pharmacists guidelines.  When you are in pain it is too easy to take more meds than the recommended dose in order to stop the pain.  Be mindful of how many you have taken and when the next dose is due.

Relax

Relaxation techniques can really help with pain relief by reducing muscle tension.  Sit in a quiet area and breathe deeply, keep your body relaxed and limp.  Play some soothing music or a relaxation CD or App that you can download from either the Apple store or the Google play store.  Don’t know how that will work with my eyes but relaxing has got to be good right.

Distraction

Any activity that occupies your attention can be used for distraction.  This can be anything, watching TV, reading a book or a craft activity.  Doing an activity that you enjoy can help to divert your mind from the pain.

Cold or Heat Packs

Depending on the type of pain and its location cold or heat packs can be used to alleviate pain.  I’m definitely going to try a heat pack across my eyes to try and soothe the area.  I reckon that would be wonderfully relaxing.

If you are in pain like I am, try some of these techniques, one of them may just work.  As I have a very low pain threshold due to fibromyalgia I personally I go for the pain killers first to take the edge off of it and then do the relaxation secondary to the meds.  That works better for me rather than just going straight to the relaxation as I find it really difficult to relax when I am in a lot of pain.

Still riding that roller coaster!

So Have I Got Fibromyalgia Or What?

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For years I have been obsessing about fibromyalgia, buying every book I can get my hands on, reading every website on the subject and diarising every symptom.  Recent events have put my diagnosis in doubt.

Fibromyalgia isn’t an inflamatory syndrome so how come since I started taking Methotrexate which is widely used for inflamatory diseases such as rhumatoid arthritis my pain has completely gone?   Seriously I have had no pain at all for probably 6 weeks now and that is unheard of.   I have had daily wide spread pain for years and now I am totally pain free (apart from my eyes but thats a whole different issue).

I spoke to my GP on Friday and mentioned that I am pain free and the first words out of her mouth was, perhaps you dont have fibromyalgia after all.  Now that is the question I will be asking my rhumatologist at my next appointment in a couple of weeks.

So what do I know?  The main thing is  I am HLA-B27 positive which makes me predisposed to getting  auto-immune diseases such as certain types of arthritis and scleritis, hence the chronic eye problems.

I have mixed feelings about maybe not having fibro.   Fibromyalgia is no fun but it doesn’t damage your joints like arthritis can.  Arthritis can be such a destructive disease which can totally cripple you.   On the other side of the coin it would be good to have a disease that is actually recognised and accepted by everyone.  Some people still see fibromyalgia as something the doctor tells you that you have when they can’t find anything else wrong with you.

I think my next step is a consultation with Dr Google to compare my symptoms with different types of arthritis and other inflamatory diseases.  I want to arm myself with as much information that I can before I see my rhumatologist.    I know a diagnosis doesn’t really matter, the important thing is I am pain free but for some reason I really need to know whats wrong with me.  I need a name, I need to own it and understand what is going on in this crazy body of mine.

Ok so lets pretend for a moment that i’m still in horrible chronic pain, these are my symptoms and other illnesses: –

* hip & groin pain
* thigh pain
* upper arm & shoulder pain
* chronic headaches
* fatigue
* bipolar
* hypertension
* empty sella syndrome
* HLA-B27 positive
* keratoconus
* scleritis
* chronic kidney disease
* sensitivity to changes in weather
* very low pain threshold
* bad sleep with not feeling rested upon waking

Reckon thats probably the bulk of it.  Any thoughts or ideas anyone?

Vitamin D – Are you getting enough?

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I have recently had my annual blood tests and when I got the results it showed that I have a marked Vitamin D deficiency.  Last year I was mildly deficient at 35 nmol/l, this year despite taking Vitamin D supplements my levels have gone down to 25 nmol/l.  Stands to reason that unless I make some changes my levels will be even lower next year.

It is difficult to get sufficient levels of Vitamin D from food and having had skin cancer in the past I need to make sure I stay sun safe.  The sun is brutal here in SE Queensland so I tend not to spend too much time in the sun without +50 sunscreen.  I work indoors and walk the dog after dark when it is cooler so I don’t actually get that much sun exposure.   Time to rethink what I am doing!

The effects of a severe Vitamin D deficiency can be quite horrific, soft bones that are prone to breaks, bone and muscle pain, fatigue ….. I am already suffering some of these symptoms.  I get bone and muscle pain and fatigue and put it down to my fibromyalgia.  I could be damaging my bones because I am trying to be sun smart and avoid more skin cancer – scary thought!

Here is some information on Vitamin D.

What does vitamin D do?

Vitamin D helps your body absorb the calcium it needs to keep your bones and muscles strong and healthy.

Sources of vitamin D

The main source of vitamin D for most Australians comes from exposing bare skin to ultraviolet B (UVB) light from the sun.

Food sources of vitamin D include:

  • fatty fish (such as salmon, mackerel and herring)
  • liver
  • eggs
  • margarines
  • some milk products
  • infant formula are fortified with vitamin D in Australia.

It’s difficult to get enough vitamin D from food alone because it only makes a small contribution to the body’s overall vitamin D levels.

Sun exposure and vitamin D

It depends on a few things such as where you live, the season, time of day, your skin colour and the amount of skin exposed. It’s important to always follow safe sun guidelines because too much sun can increase your risk of skin cancer and may cause the vitamin D in your skin to break down.

You can find more information about safe sun exposure and vitamin D on our Stay safe in the sun page and the Cancer Council Australia website.

Never use a solarium to boost vitamin D levels because they emit dangerous levels of ultraviolet (UV) radiation that increase your risk of skin cancer.

What happens if I don’t have enough vitamin D?

Moderate to severe vitamin D deficiency can lead to rickets (soft bones) in infants and children.

Low vitamin D levels can lead to osteoporosis and increase your risk of falls and fractures (broken bones) if you are over 50. Osteoporosis occurs when your bones lose calcium and other minerals making them fragile and easier to break. Vitamin D helps your body to absorb calcium, and not having enough can increase your risk of developing osteoporosis.

People with very low levels of vitamin D (moderate to severe deficiency) are the most at risk of developing health problems.

A number of diseases have been linked to low vitamin D levels such as diabetes, heart disease and some cancers. Doctors don’t know why this is the case, and the benefits of increasing vitamin D intake for these diseases is also unknown.

Who is at risk of vitamin D deficiency?

You may be at risk of vitamin D deficiency if you:

  • stay mostly indoors for health, work or other reasons
  • have naturally dark skin
  • cover your body for religious or cultural reasons
  • avoid the sun for skin protection or due to medical reasons
  • are obese
  • have a health condition that affects vitamin D absorption from your diet
  • take medicines that cause vitamin D to break down
  • are a baby of a vitamin D deficient mother.

Do I need a vitamin D test?

A vitamin D test is a simple blood test that measures a form of vitamin D in your blood called 25-hydroxyvitamin D (25-OHD).

Vitamin D tests are most likely to be useful for people most at risk of health problems such as brittle bones or bone fractures as a result of low vitamin D levels including:

  • older people diagnosed with osteoporosis
  • older people with an increased risk of fallsand bone fractures
  • pregnant women and breastfeeding mothers at risk of vitamin D deficiency because this deficiency could affect their baby’s bone and tooth development
  • babies, children and adolescents at risk of vitamin D deficiency because their bones are still growing.

Vitamin D tests are less likely to be useful for healthy adults under 50 years who don’t have symptoms or risk factors for vitamin D deficiency.

If you’re healthy but worried that your lifestyle is putting you at risk of vitamin D deficiency you could:

Talk to your doctor if think you need a vitamin D test.

The best time to test for vitamin D is at the end of winter or in early spring when your vitamin D levels are at their lowest.

How is vitamin D deficiency treated?

If you have a mild deficiency then your doctor may recommend a few simple things such as:

  • increasing your sun exposure
  • increasing dietary calcium
  • increasing physical activity
  • taking a vitamin D supplement.

If you have a moderate to severe deficiency then you might need to take a high-dose supplement and repeat the blood test in three months time. Your doctor will discuss this course of treatment with you.

Some children and teenagers may need to be tested every year if they are identified as having a high risk of a deficiency.

Vitamin D supplements

Vitamin D supplements are available over-the-counter as in different forms including capsules, tablets, dissolvable tablets, chewable tablets, powder and liquids. Your doctor or pharmacist can advise you on the best one for you based on the strength of the medicine, the number and type of active ingredients it contains and your reason for taking it.

You can find more information on vitamin D supplements on the NPS Medicine Wise website.

Surviving a body falling to pieces

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It’s really tough when every time you go to the doctors and they find yet another thing wrong with you.  I saw my rheumatologist last week and I was praying that he would find something wrong with me that could actually be cured.  I was quite disappointed when he said no, x-rays and bloods look good, you definitely have fibromyalgia.  Well that sucks because fibromyalgia can’t be cured and I’m totally over having incurable illnesses!

I tested positive for the HLA-B27 gene so I was surprised when nothing showed up, particularly as I have been suffering with chronic scleritis (an auto-immune illness) for the last four months.  I have had intraocular steroid injections (Ouchies!), steroid drops and prednisone tablets.  Every time I try to wean off of the pills the scleritis flares right back up again.  Scleritis is the most painful eye condition I have ever experienced.  Think red hot daggers being stabbed into your eye and you would be pretty close to the pain levels I have been experiencing.

The prednisone has been nasty, weight gain, headaches, hot flushes etc.  The list of symptoms goes on so I can’t wait to get off of it.

Last week I was put on a drug called Methotrexate, a very strong med that is taken once a week.  It kind of dampens down the immune system so that healthy cells don’t get attacked.  It is used to treat rheumatoid arthritis and other inflammatory conditions, and in much larger doses is it’s a chemotherapy drug for cancer.

I was reading up on Methotrexate and it is a really scary drug, plenty of nasty side effects and horror stories of people dying because they misunderstood the instructions and took the pills every day instead of every week.   Well to me it was a no brainer, after being in so much pain for 4 months I had to give this a go.  One pill and a few hours later my eyes are so much better, absolutely no pain at all.  Still a little red at times but no pain – amazing!

I was kind of hoping for a small miracle in that it would help with the fibro pain.  No such luck, fibromyalgia isn’t an inflammatory illness so the Methotrexate hasn’t had any effect.  Back to the hot water bottles, Endone and Panadol!

I’m seeing my eye doctor tomorrow, the weekly drill is to sit for a couple of hours waiting, watching my appointment time come and go whilst they see to emergencies and surgical inpatients and then pay an outrageous amount for parking. Fingers crossed my eyes stay well and hopefully tomorrow I can finally come off of the prednisone, and not have to go back for a few weeks.

I really need to lose this bloated fat feeling I have had since I have been on the Prednisone.  It makes me feel sluggish and more tired than usual.  That plus the fibromyalgia fatigue and I have practically been a zombie for months.

Life sure is a roller coaster!