Tag Archives: HLA-B27

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.

Gonna Have a Crazy Eye for a While

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4 days after the Avastin injection my eye is still looking pretty crook, got a lovely shiner to match the red eye.  Saw the eye doctor yesterday for a check up on my crazy looking eye.  Aparantly a subconjunctival hemorrhage is quite common after an Avastin injection, but the doctor was very impressed with mine, usually it’s a minor problem but mine is the biggest bruise she has seen in a long  time.  As well as the bloodshot eye I have a proper black eye underneath too.  Unfortunately it can take around a month for it to clear up so I am going to look like I have been in a pub brawl for a while longer.

I need to get over my shyness with it, I have been hiding out in my office at work and avoiding people because it looks so horrible but if I’m going to be living with it for a while I need to get out there with my head held high and not worry about it.  Perhaps I should make up a cool story about how I got it instead of a boring old injection!

I am hoping the I will be able to get my lens in that eye in the next few days,  I was hoping for today but it is just too sore still.   It has been really difficult at work wearing just one lens. I am managing on the computer OK as I have the font really big but I am finding reading paperwork really challenging.

The rhumatologist has increased my methotrexate to 15mg with a view to raising it to 20mg in about 4 weeks if my bloods look good.  Hopefully will finally be able to get off of the prednisone.

I just want to get rid of the scleritis and get relatively normal eyes back (as normal as a keratoconic eye can be).  This last 7 months has been a massive roller coaster for my eyes.

Have a good weekend all.

Feeling Crappy & Bipolar

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There’s that saying that there is always someone worse off than you.  Very true, but that thought really doesn’t make me feel any better when I am having a really crap day.  When I am feeling good it’s easy to have sympathy for orphans, neglected animals or disabled people, but today all I care about is me.

Why me? I’m thinking, I must have been a really hideous person in a previous life to be saddled with all of this crap.

My eye hurts, I can’t wear my contact lens so can only see out of one eye, I have a crazy headache and I really don’t want to be at work.

What can I do to soothe myself and feel a little better?

I’ll tell you what …. Prescription pain drugs.  Forget about the meditation, mindfulness and all that other self-help stuff, today I need the hard stuff.  I need to pop a pill and forget about it for a few hours.  I just want to feel normal, just for a bit, is that too much to ask?

That feeling of total and utter relief when I take a painkiller is amazing; all of the stress and pain just washes out of me.  Now I can get on with my work and lead a normal life.  Well kinda normal, I’m avoiding everyone in the office and walking around with my head down because I don’t want them to see my crazy eye, but apart from that it’s pretty normal.

I have conquered that roller coaster today, done the scary loop the loop and come out the other side.  Life is good!

p.s. pain meds should be taken as per your doctors instruction, be very careful that you follow those instructions properly.

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?

The never ending misery called Scleritis

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I thought having keratoconus was miserable. Having to wear contact lenses for extended periods, always having tired and strained eyes and struggling to get good vision on a daily basis.  Sounds pretty miserable hey.

Try having chronic scleritis, it is a total killer.  I’m going through my latest flare up and I feel absolutely horrible.  The Methotrexate has been amazing for my Fibromyalgia pain but hasn’t done much for the scleritis, so I’m back on 25mg Prednisone daily until I see the Rheumatologist again.

I am HLA-B27 positive which means I am predisposed to getting autoimmune diseases.  Scleritis falls into this category, alongside other inflammatory diseases such as Rheumatoid Arthritis and Ankylosing Spondylitis.

The pain of scleritis is intense; it consumes you until you can’t think about anything else.  It is a deep boring pain that just doesn’t let up.  It saps your energy and leaves you wrung out like a wet rag.  It has reduced my ability to concentrate and made me much less efficient at work.  I can’t take a heap of sick time off every time I get a flare up so I have to suck it up and get on with it.  Endone (Oxycodone) has become my friend.

It’s funny; people at work can’t even look me in the face when I am having a flare up.  Looking at me makes their eyes water and horrifies them.  My eyes do look pretty crook so I don’t really blame them, but it is kind of weird when someone is talking to you and looking everywhere but at you!

The scleritis seems to have made my right eye much more sensitive to wearing a lens, even when my eyes are good.  I spoke to my eye doctor yesterday about my options and he feels that my eyes are too far gone for either intacs or corneal crosslinking, so if I want to try and get better vision, and to have an easier time getting fitted for a lens or attempting to wear glasses the only option left is to have a corneal transplant.  I am seriously thinking about this but my eye doctor won’t even consider it until we get the scleritis under control.

Two eye doctors have recently examined my eyes in the absence of my own eye doctor and one thought I was fascinating and the other very complex!  Would rather just be normal!

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!