Wednesday, January 20, 2010

Blurred vision. It's not fun.

I've only recently got blurred vision as a symptom. Once in January, during my hospital stay, I couldn't see people's faces, watch tv, read, or do anything, really except talk to the kids in my ward, who were blurs. The doctors weren't concerned until I mentioned it for the 100th time, then they looked at my eyes. Couldn't see anything wrong. Turns out, it's a symptom of ME/CFS. Funny, no doctors knew about it.
Anyway, it's back again. It's a side effect of the pain medication along with fatigue, sleepiness, (not getting that, unfortunately) confusion, blurred or double vision, changes in weight, nausea, back pain, muscle pain, dizziness, unsteadiness, disorientation, forgetfulness, headache, sore throat, fever/chills and a runny nose. I've had all of those except the sleepiness, so I'll probably go off it. The first time I was on it, it was just weight gain and the blurred vision for one day, and then another half day. Now, it's two days running of blurred vision, with brief moments of reprieve, and I don't think a medication that causes or can worsen symptoms I've already got is a brilliant idea. But, hey, at least I didn't get jaundice or hallucinations, right?

It sucks, because I can't use my laptop, I can't read, all I can do is watch tv, and even that's blurry. If I miss dialogue, I have to rewind it, because I can't read the damn subtitles. And I tried my reading glasses. (Yes, I needed them from age 9 - 12.) They didn't help, and they always gave me headaches, the whole three years.

I'm really stressed about how I'll cope with Methods CAS this year. And what if the blurred vision happens on a day when I have tutoring, or a test, or worst of all, an exam? I won't be able to see the exam!! At least I can tell my tutor I'm sick, and apologise like hell, but that doesn't work with Year 12. I'm so exhausted, and my doctor thought I'd be doing 3 subjects this year, and full time uni next year, plus a part time job, when I saw her in November last year. No one knows what to do, and very few people will admit it. I'm just so sick of never knowing what will happen in the next hour, day, month or year. It's the unpredictability that's awful.

Anyway, I don't want to push my eyesight, not while it's still here, so that's all for the moment, I guess. Anyone else get blurred vision with ME/CFS, or know how to help it? 'Cause "time" isn't the most convenient or practical answer. Also, if there are any typos, it's the eyesight. Not used to the laptop.

6 comments:

  1. I have blurry vision from CFS/ME. Apparently my hypopituitarism contributes to it, the adrenal insufficiency and possibly the dehydration I get from antidiuretic hormone deficiency. Recently it has occasionally got quite a bit worse than usual. It also prevented me from getting an Rx for new glasses (!). Apparently it's illegal in Finland for an optometrist to prescribe glasses for someone whose vision is as fucked up as mine. I can, however, always read and watch things, sometimes it's just annoyingly blurry.

    Some people with CFS/ME have very severe vision disturbances. My friend hasn't been able to read, watch TV or anything since she got ill some 15 years ago. I think her problem is quite different from mine, though, mostly about her eye muscles. Eye strain makes it much worse and causes her severe vertigo. Eye strain doesn't seem to worsen my blurriness. She sometimes has nystagmus. In general you will notice that she can't see properly. There's just something "wrong" with the way she looks at you, a bit similar to blind people (even though she's nowhere near blind). Problems of this kind of severity are fortunately rare. I've only heard of one other case and she didn't have a CFS/ME diagnosis (but I think that's what she had).

    I'm in the process of writing an article about vision disturbances and other eye problems in CFS/ME. It is quite well documented in the medical literature, but very few doctors know about it.

    As for treatments, baclofen might be helpful for the kind of eye problems caused by muscle dysfunction. My friend hasn't been able to try it yet. I'm not aware of any other treatments, unless the cause is hypopituitarism, in which case hydrocortisone and/or desmopressin or even just better hydration can help.

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  2. I've got Fibromyalgia (FM) and Chronic Myofascial Pain (CMP), but not CFS. I have problems with blurry vision sometimes, especially shortly after the concussion that started all this FM stuff. My contact lens Rx actually improved 1.00 after the concussion, which is unheard of and stumped my optometrist.

    I remember having double vision just one time, with Lyrica, and it was only in one eye, so I knew it wasn't a focusing problem. It was odd, but went away after an hour or so. I went off Lyrica for other reasons.

    I get blurry vision from time to time, including today, but I can still function, mostly. It's distracting and annoying, since I work on the computer full time, so most of the time I'm reading my screen.

    I also have floaters in my vision and frequently see distracting black dots, bright dots and streaks, and movements that appear in my peripheral vision. I get migraine auras sometimes, which are similar to these effects, so I pass them off as normal for me, I guess, or part of FM. I don't really know if it's normal, but nothing ever shows up in MRIs or eye tests as problematic.

    I understand your fears about being struck with vision problems at inopportune moments. I've gotten auras while driving, while taking a test at school, and plenty of times during work. I've always come up with a worst-case scenario and have an alternate plan if I need to use it. Sometimes, I had very few options (like during that test) so I just did the best I could under the circumstances.

    Make sure you have someone you can rely on if you need a ride or miss a deadline due to vision problems. If you're concerned about your job or school, consider telling your instructor or supervisor about your tendency to get blurred vision. Then when an episode strikes, it's less stressful for you to have to let them know.

    Good luck, and thanks for posting about this problem.

    Benia

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  3. hope you are getting better… sore throat is not a lot of fun its just uncomfortable and difficult to swallow.

    usually, i would take the Nim Jiom Cough Syrup (www.geocities.jp/ninjiom_hong_kong/index_e.htm ) which has a thick consistency formulation. it coats the throat and includes herbs that are particularly good for that application.

    i hope it works on you as well.

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  4. I hope you're doing well now, Alex. I understand your anxiety because we all rely so much on our eyesight. Blurring gives us the feeling of uncertainty, and that can impair our functions. But don't lose hope and just hang in there, Alex! Help is widely available.

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  5. Hi, My 18yr old daughter has been ill on and off now for about 7 years. For the last 9 months she has been constantly tired, achey, swollen glands, sore throat and stomach aches. She has now been diagnosed with CFS at long last. The problem at the moment is her eyes. She is struggling to cope with the blurred vision and black spots. After tests at the hospital we have been told that her eyes are healthy. I'm at a loss as what to do now, as its causing her distress. Any suggestion?

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