GCA flare, a lesson learnt

[Whatawonderfullife]

Yesterday I started to write about the past but I’ve woken up this morning feeling more positive, so I I’m going to start again. It’s a bit long so I apologise in advance.

On Wednesday I attended my first Health and Wellbeing appointment, suggested to me by my Mental Health Nurse, after realising that I’m not coping with the reality of living with Fibromyalgia.

After 10 minutes of introduction, the lovely lady apologised but felt it necessary to comment about my extremely blood shot eye. It had occurred on the Sunday, the conversation then moved on to me admitting that it ached and came with a headache at my temple, which had persisted since Friday, along with a tender scalp, since the beginning of the week! Realising when I said it all out loud what I was in complete denial! ( However, in the past, with rheumatologists, I have felt unheard, told I am too young to have GCA and in fact in some ways, wasting their time but of course not passing the blame). She suggested that she would speak to a colleague for advice and that it may be passed onto a GP, who my want to call me, I agreed.

To cut a long story short, when I arrived home, I had a lovely GP call me, who I then told I had experienced blurred vision. She sent me to an ophthalmologist in the town who checked my peripheral vision, which I’d lost, in my left eye. I’d also experienced a short time that morning a curtain sensation over the same area of my eye for a good few seconds, which had occurred a couple of times. 🤦🏼‍♀️ What an idiot, why did I let them get to me?

I was sent to A&E. I was so frightened, checks done, my markers were up but not really high, they never are. I was admitted, I was given steroids immediately. An iv drip was given for 2 days, I was seen by a rheumatologist, twice. I was seen by an ophthalmologist, my sight had been saved, oh thank goodness! I had an MRI.

They have said that they now understand me, they can treat my GCA, we have a plan!!!

I’m gutted that I’m starting again, but I feel I’m more informed. Ive learnt there’s no rush to refuse so low, I’m listening to me and my body, not the rheumatologist or anyone else if I think something isn’t right, I have to say. I know me and the signs and if it happens again, I will act straight away. I am cross with me as much as anyone for letting this happen. I’m so grateful to the person who mentioned my bloodshot eye, I didn’t lose my sight!

Hopefully this time the road won’t be so long and bumpy.

[DorsetLady PMRGCAuk volunteer]

Well done your lady for stepping up, and saying something which many wouldn’t have, and to those that treated you afterwards.

So pleased it turned out as it has….but don’t be too cross with yourself, these things happen… I know !

[123-go]

First of all I’d like to say thank goodness that the chain of events and the proper medical attention you needed led to your diagnosis and consequent treatment. Your experiences will be extremely helpful to other people who are reluctant to report changes in vision; these symptoms are very often warning signs and mustn’t be ignored. We learn by our own mistakes and by reading about those of others so thank you for posting this. You have reminded us to trust our own bodies and our instincts and to question things we aren’t happy with or don’t understand.

Good luck as you go forward.

[PMRpro Ambassador]

Told all that - we'd have been hopping up and down saying go to A&E. But had just the subconjunctival bloody eye been mentioned we probably wouldn't have.

But now I trust the "fibromyalgia" is being rethought? I just reread your post from 2 years ago. I trust those rheumies now appreciate their blinkered attitude put your sight at risk. And your GP has been a hero!

[Mcdurmott]

So glad you received the right attention at the right time! It’s so easy to go into denial about symptoms we’d rather not confront. At the same time, we’re often not feeling very well, and our judgment is somewhat impaired. I had that happen to me when I was first diagnosed —-double vision, scalp tenderness, temple pain, jaw claudication to the point of having adopted a soft diet. In retrospect, I wondered what I was thinking. On the other hand, I’d gone to my dentist and a TMJ specialist about the jaw claudication, and no one suspected GCA-PMR because I didn’t mention all of the symptoms. Thank God for my primary care physician who identified the problem immediately. She told me that when she was a resident physician, she misdiagnosed a case of GCA and the patient lost their side. She never forgot that! So it was the right time, right care for me too. Wishes for the best, whatawonderfullife!

[Bcol]

Nothing very different to add to the previous comments. Well done to all concerned this time round and no point being grumpy with yourself, things sometimes look very easy with hindsight. Onwards and upwards with life, downwards, very slowly, with Pred. Best wishes and take care.

[Whitner]

so grateful you had an observant person in your life who got the ball rolling! It’s so easy to understand why you didn’t put it together because there are a million reasons why certain things are happening separate from GCA. Right now I’m questioning things going on with me: stiff neck, stiff right shoulder, headache and weird jaw pain…. Are all these symptoms because I’m down to 1 mg and I’m three years older than when originally diagnosed with PMR? I’m not sure. I see my rheumatologist tomorrow for a routine visit.

[Whatawonderfullife in reply to Whitner]

So many things can affect how you think your body is managing and how I was feeling, I used to put most things down to fibro. I knew the doctors are under stress with so much work, I needed to be sure before making that call.

Don’t you think that saying it out loud, you realise it’s time to act? I hadn’t put all the symptoms together. The unusual one but always the same for me is the extreme bloodshot eye, it was the same last time I had a flare.

The problem I also had this time, was feeling quite overwhelmed with how my life has changed over the last 3 years with having GCA and then also fibromyalgia.

I was an extremely active person, running, middle and long distance, walking my dogs, riding my horse. Now I am unable to do any of the above and am having to consider buying a mobility scooter to accompany my husband when walking the dogs. But hey, I can do that 😊I’m getting there and I will!

I’m grateful for everyone’s help

[HeronNS in reply to Whatawonderfullife]

I'm so glad to hear you may finally be on the right path to recovery. Don't give up on the walking too soon. If you're able to recover strength in your legs you'll be okay. One thing which helped my rehab after some knee injuries a few years ago was using a pedal exerciser (not a stationary bike) which, along with some physio exercises, really helped. I'd been planning to get in line for knee replacement but that doesn't seem to be in my near future after all. I had noted one of my legs, the one which had hurt the most before I started to recover, was actually wasting away, which was rather worrying to say the least, but in retrospect it didn't take all that long to turn things around. I hope you are able to do the same. (If you, and your medical people, think a pedal exerciser might help you, get a sturdy one. There are cheaper, but more flimsy, options which I think lead only to frustration. To see the type I bought google Todo pedal exerciser.)

[Whatawonderfullife in reply to HeronNS]

thank you HeronNS I will take a look. Did you find you could only exercise for a few minutes at a time to start with? I have found with the Fibro that exercise seems to cause more pain but it’s worth a try, I have nothing to lose.

[HeronNS in reply to Whatawonderfullife]

I was so pleased with myself being able to use the pedal exerciser for 5 minutes! But it didn't take long for me to get strong enough to use it longer. My son had given it to me for an early Christmas present and I think he was a bit taken aback when I told him only 5 minutes! I now use it half an hour a day when I read aloud to myself. I read aloud to help me keep my voice as I don't have occasion to use it much, and so this serves a double purpose. Of course I don't have fibromyalgia so I don't know how that would work for you. PMR has never really been a problem for me exercising, at least not since I started pred, but I never had any athletic aspirations so maybe my standards aren't very high.

[Whatawonderfullife in reply to HeronNS]

I think I will follow your lead! Sounds like an ideal way to try and get some kind of strength back. What a great gift! Even if I manage a minute to start that’s better than nothing. Thank you 😊

[Sophiestree]

No words, but Wow!

Thank goodness for that woman. And how stupid people are to say you are too young with obvious symptoms like yours.

You must be so relieved. Take good care of you, you have proved that no one else will!