Do these Fibro symptoms- improve?

[saj01]

I've started to have lots of visual disturbance, apart from the usual spaced out and feeling woozy. This last couple of weeks I've had difficulty eating as my jaw aches when I eat ... it's not tooth pain, but I can't even eat the soft crust on sliced bread, even having to overcook my veg, which I hate doing.

The visual disturbances I did have were short lived, but now becoming more severe, more frequent and longer lasting. For example yesterday which miraculously started off as a relatively good day by comparison, I had to take my car to the garage early in the morning, but when walking back I had double vision and felt like I was drunk!... it lasted for a few hours... but today it started as soon as I got up about 6.30 am and has only settled down just now.. so about 7 hours, although still feeling a bit spaced out..

I'm really concerned I'll even have to stop driving, even though I don't go far nowadays but I do have to rely on my car otherwise I'd become very isolated- I live on my own and don't have anyone to help my out.

Do these symptoms fade or become worse/ better in the long term and if so, how do you manage them?

[SnazzyD]

Do get this checked out rather than blaming Fibro. The visual disturbances, feeling off and jaw pain when eating may be the start of a rheumatic condition called giant cell arteritis. This is where you get inflammation in the arteries to the head so your jaw muscle doesn’t get enough oxygen when you chew. Whilst the jaw may be due to temporomandibular joint dysfunction or sternokleidomastoid muscle tension, the fact that you are having intermittent sight issues raises red flags. Yes, it may be a migraine type thing, but GCA is serious if not treated and can permanently affect your sight. I know because I had it. Better get it checked soon and feel a bit silly but relieved if it turns out to be nothing than to have not bothered and have irreversible sight damage. I don’t agree with diagnosing on forums but this needs urgent medical advice and treatment if you do have it so it’s worth the alarm.

[desquinn Partner Volunteer FMAUK Trustee in reply to SnazzyD]

saj01 I would agree with SnazzyD that you need to get this checked out as it could be GCA and this can be treated and earlier is much better. But it could also be any number of things.

I would not typically put it down to fibro as it is not a core symptom. please see a GP and potentially an ophthalmologist as well.

[saj01 in reply to desquinn]

Hi, Thanks for your reply. I certainly will get it checked out. Strangely enough the pain in the back of my neck on the left side which goes up in my head is also worse. This whole fibro thing started after I hurt my neck- left side. I did mention it to my gp when I went about a persistent headache/eye pain above my left eye afterwards....but he didn't think it was related... wondering if there's some damage there? Thanks once again for taking the time to answer.

[saj01 in reply to SnazzyD]

Thanks for your reply... I wasn't aware of the condition. I'll certainly look it up. I've had a detached retina and lens replacement in the past, so could ring the eye clinic... might be quicker than the gp. . My gp wasn't very helpful when I went for the early fibro symptoms..but will ring them for an appointment come monday.

[SnazzyD in reply to saj01]

Sounds like a plan. Retinal problems can also need urgent attention and if there is GCA affecting the blood supply to the eye they should be able to see it. GCA is not very common but common enough that a GP should recognise the red flags. It can be a devil to diagnose because there is no definitive test other than a biopsy which can give false negatives or a specialist ultrasound that isn’t readily available everywhere. They check blood for raised inflammatory markers but in up to 20% of people, like me, that’s normal. In my case the diagnosis was made on the strength of symptom history and rapid relief of symptoms after a high dose of steroids. Whatever it is, eyes are precious so keep on it.

[saj01 in reply to SnazzyD]

Thanks, will certainly do that... I nearly lost the vision in my left eye because of the detached retina... brilliant surgery... can't thank them enough. So I know how precious they are. Going back to your post, I'll had a quick read through both GCA and polymyalgia....both of them mentioned inflammatory markers in bloods... my last bloods didn't show any.. hence the fibro diagnosis. But, having said that, it doesn't mean things haven't changed, although I have got a raised blood vessel on the side of my head which i noticed a couple of days ago. ummm??? maybe something, maybe nothing. Thanks once again.

[SnazzyD in reply to saj01]

Commonly people do have raised markers with GCA but not everybody so if there is a compelling symptom history and steroids help, it points that way. Not everybody with PMR, that often accompanies GCA, has raised markers either (I wish I could remember the reference) and I know quite a few on that forum with that problem. I know of people on the other forum who were given the Fibro diagnosis because of unremarkable markers, but that was changed after a second opinion and a successful trial course of steroids worked wonders. It has also happened the other way, where a PMR diagnosis was withdrawn because steroids did nothing. Some docs use a trial of a week or two of steroids for extra proof but the dose needs to be at least 15mg up to 25mg. If docs think it is GCA they like to do a biopsy but the guidelines say steroid treatment shouldn’t be held up while you’re waiting for it because of the risk to eyesight. The trouble is, the longer you’re on steroids, the more if affects the biopsy result. For GCA the starting dose is much higher at 40mg up to 100mg. One of the things I noticed in the run up to diagnosis was a raised blood vessel to the side of my eyebrow. My husband has monster veins there but that’s normal for him but not for me. I also had slight tenderness in the temple and my scalp had become prickly which gradually got worse.

[saj01 in reply to SnazzyD]

Thanks for the information... I can see why some now it's so hard to make a correct diagnosis, with all the different complaints that are similar is many ways...re the vein, that's changed since yesterday, it sort of goes from an inch above my eyebow slanting down to the top of my ear. All very odd. Can't get a gp appointment at weekends, we now have to ring at 8.30 a.m. to get an appt for that day... last time I did that I was 42nd in the queue! So will try on monday. Spoke with optician this morning, they've emailed someone at nhs... not sure which dept, to give me a ring... we'll see what transpires. p.s. thanks for listening

[SnazzyD in reply to saj01]

The vein could be a red herring as they say but do mention it. If you get double vision again, blanks spots or flashes and your jaw hurts when you chew it’s an A&E job really.

[saj01 in reply to SnazzyD]

The optician asked me about that this morning, not getting blank spots or flashes.Peripheral vision okay.

The vision is slightly better today, double vision when I look right and left at the mo.

Am trying not to get myself wound up. Hope it doesn't get worse, its a 2 hr journey to the hospital by bus. it's a bummer!

[SnazzyD in reply to saj01]

It’s a fine line isn’t it between being aware of possibilities and panic? Let us know how you get on.

[saj01 in reply to SnazzyD]

Will do.

[Hayleya3]

Hi do get checked over as I also have fibro only just diagnosed but I have also just been diagnosed with vertigo which is most of the symptoms you are having they could last for hours at a time or just a couple of minutes hope this helps.

[saj01 in reply to Hayleya3]

Thanks Hayley, glad you've had a diagnosis. It's such a strange condition, it's so variable. It would be interesting to know if there's some common denominators regarding cause, although they do say infection / injury

You take care of yourself.

[Sarahvit]

Hi, I have had fibromyalgia and CFS for 30yrs. I noticed that over the years I have become right eye dominant when taking to eye test at DMV I wouldn’t see the last set of letters. So my brain pretty much coped with this by blocking out my left eye. Sometimes my left eye wants to see especially when reading I will see double. It makes it hard when reading. For me this really hasn’t improved but I’m going to make an appointment with an eye doctor who specializes in this type of problem. I saw it advertised on Facebook. Don’t remember what it was called now but have it saved in my phone. Blink eye care in Charlotte NC. I found it neurolens provider. The add asked several questions about your symptoms and then it connected me to a local eye doctor who provides the “neurolens” you can find more about it on YouTube. I’m hoping this will work.

[saj01 in reply to Sarahvit]

Hi Sarah, thanks for your reply. I vaguely remember seeing their website, but it's in states. Hopefully they will be able to help you. I'll have a look to see what the neuro lens is all about as yet, don't know if there is a similar type in the uk. I only wear glasses for reading, and close work at the moment, although I do have some for driving just to sharpen the vision at distance... will have to see how things pan out in the future.