The single most difficult problem with fibromyalgia or any chronic pain condition, other than the relentless pain itself, is figuring out when to seek help for that pain or any discomfort or unusual sensations your body may be offering. I have a general rule – don’t go to the ER unless I’m unconscious or hemorrhaging. I’m actually more reasonable than that, but it’s close. Another rule, don’t go to the doctor unless something has persisted at least a couple weeks and/or it’s interfering with work. So many times, I’ve waited and waited and put up with problems, only to go to the doctor, have them find nothing, and then the pains resolve all by themselves. Money and time wasted. At least, however, I know when I feel a certain set of pains that I can wait. That’s the pain that was thoroughly checked out and it was nothing. It will go away. the problem is that being really unable to seek help when I feel like I might need it causes some serious anxiety. After all, in 2002 I had a massive pulmonary embolism that came very near to killing me. I had waited months before getting help.
Funny thing is the anxiety comes more in NOT finding something than thinking the doctor MIGHT find something. I’ve said more than once in all seriousness, I’d prefer the doctor find SOMETHING, a tumor, anything that they have a shot at fixing, rather than find nothing and give me the “we don’t know what it is you’re feeling and we can’t do anything for you; we understand how difficult it is [no you don’t] but it’s not x, y, z and you’re on your own” talk. I love doctors, I really do. I find 99% of them wonderful human beings – incredibly healthy human beings – who really do want to help. I’m a source of frustration, but I’ve only had one or two just shut down on me when they figure out they can’t figure me out. Maybe my anxiety comes in the possibility of seeing that shut down. After all, in 2002 shortly before I woke up on my bathroom floor with a massive pulmonary embolism, a doctor shut down when he saw the fibro diagnosis in my chart and sent me home without taking me seriously when I said something was wrong. I saw it in his eyes.
So this weekend I spent the days trying to find the hair that was hanging in front of my left eye. I have short hair. My bangs don’t hang in my eyes. Maybe it was an eyelash. Nope. So yesterday morning sitting in my office trying to push the non-existent hair out of my eye, I struggled with the question. To call or not to call. I wasn’t horribly uncomfortable. I just knew something was wrong. I called, and the ophthalmologist’s office said they’ll triage my question and they’d get back to me. I hung up and went on with my normal day, expecting not much. About 15 minutes later, “Can you come in right now?” Huh, sure.
Five hours of testing and imaging later, of course there was no detached retina. But there is a spot, an odd spot called a cotton wool spot. It’s somewhere in my eye, looks like a bit of cotton fluff, right near my optic nerve. It’s not that big of a deal, but it is usually an indication of a more severe underlying condition, such as diabetes or high blood pressure. I have neither. My BP was 138/89 yesterday even after bright flashing lights in dilated eyes. Plus, the imaging of my left is a little blotchy or patchy compared to my right eye, a condition (I can’t remember what the doctor called it) which could indicate that my eye isn’t getting proper nutrition or blood flow. That, he said, could be more serious. Not enough nutrition or blood flow could lead to blindness. So he went to discuss with a specialist who wasn’t quite as concerned as he was, but they decided to run blood tests to be sure of what was going on.
My surprise at the doctors actually finding something melted away into that familiar resignation. Blood tests. There’s never anything wrong with my blood. They’re going to find nothing and then say, well the cotton wool spot will resolve eventually; we’ll keep an eye on it. Indeed my CBC panel came back perfectly normal. My inflammation marker is up, but that doesn’t surprise me or my stiff and swollen joints. There are more results to come, but I’m not holding my breath. The doctor will call when they all come in and say, er uh, well there’s nothing significant in your blood work. So we’ll just observe. Call us if you notice any changes. And then I’ll notice a change and I’ll sit there thinking, is this a change? should I call? will I just be wasting more time and money? It’s like a merry-go-round of indecision.
Fibromy What? 
Oh my goodness!!! Girl! Same! This is the story of my life at times! Wishing you the best and sending good juju!!!
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I have now had 3 cotton wool spots! They think its spikes in BP. Now off to see a retina specialist. This is so scary
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Did you ever find anything out? I recently was diagnosed with a cotton wool spot also and everything looks fine.
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Hi Brooklyn, nope, never found out anything. The cotton wool spot just eventually went away. It was one of those “play it safe” moments. Went through testing, including the diagnostic surgery on the blood vessel… don’t remember the name now… all good, and then that pesky “hair” in my eye just went away on its own. Three or so years later though, I have the heart failure w/preserved ejectiom factor diagnosis and am on high blood pressure meds for that. Was the cotton wool spot a little warning flag? Not a clue….
I hope yours fades away like mine did. Very glad you went in and got it all checked out. Take care!
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Hi Brooklyn! Going through the same thing now. Any update with your eye? Hope everything has turned out positively for you
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Hi! Stumbled upon your page after scouring the internet FOR DAYS trying to figure out what is going on with me. One random morning I woke up with something off in my left eye vision, no floaters, no dark spots, just a shadowed horizontal line across my line of vision that randomly appears, and when I squint hard, turns into a bright light. Went to a retina specialist and he found what looks to be a single cotton wool-spot BUT he thinks it could also be something I was born with (Myelinated retinal nerve fiber layer) that aligned with the liquid in my eye changing and is causing the vision issues. Was sent off to a bunch of bloodwork last week (from CBC to CMP, ESR , ANA) and anxiously waiting for results now. I’m 24 years old and am overall pretty healthy so this has all been driving me crazy. Funny that doctors can spew multiple possible diagnoses, and then just leave you waiting AND not expect you to freak out in the meantime.
Found your page and thought damn, this seems to be just a healthcare thing. Wondering how you’re doing now and what blood tests you originally got with your cotton wool (and also any things you would’ve wished you checked on, especially with your recent heart diagnosis).
Sending lots of positive thoughts and vibes your way.
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Hi Nineers, sorry to hear you’re dealing with a cotton wool spot. Unfortunately I don’t remember which blood tests they did – but I’m sure they did them (a doc’s favorite). The main thing was doing a biopsy on the vessel on that side of the eye. I can’t tell you now what they were looking for – blood flow to the eye maybe? Everything came up negative and eventually it just disappeared. So if everything comes up negative, big deep cleansing breath and just wait a little. You did absolutely the right thing getting it checked out. Try not to worry :o)
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Wow, thank you for your quick response! Really hope all of your concerns are under control now too as I see you havent posted in a couple of months.
No biopsy recommended for me, doesnt seem like I have any artery inflammation but now that I know thats what you had done, I’ll bring it up to my ophthalmologist once I go in for my follow up this Friday. (Google says it’s for giant cell arteritis? But also that some of the blood work shows signs of that.)
Health is such a weird thing. I grew up in a family of doctors so medical paranoia is definitely a thing, especially when something is unexplainable, a feeling im sure youre well acquainted with given the fibromyalgia. Also, worrying is my forte! Figured I might as well do all my checkups and finally see a dermatologist also to start scanning moles.
Google is a huge medical hole that many of us dont know how to navigate. I figure you’re in the medical field too based off of some of your posts?
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Good morning! Giant cell arteritis – yes, that’s what they did the biopsy for. Might be good to ask about it with the blood work showing signs of it?
I can see how growing up in a family of doctors would be a little insane-making. My mom was a nurse, so that was bad enough. It’s good to do all the medical checks, keep up on the yearly things, but you’re young, and there will be PLENTY of time to worry later. If you have good medical habits, you’ll be fine.
As for Google. I make it a rule not to look or I only look at Mayo Clinic or Cleveland Clinic sites – they have excellent, readable information without fearmongering. I am in the medical field but not a caregiver (I’d be the person they’d have to revive from a dead faint during exams). I manage the ENT residency at Mayo Clinic in Rochester, MN, so I get to work with the residents. Being there also gives me access to medical journals and search engines to find the really interesting stuff, which is what I’ve tried to share. I haven’t posted lately because I’m having trouble with concentration and fatigue. My focus is working every day. But I’ve recently come across some stuff I need to get written down. Thank you for giving me a little nudge. It’s a pleasure for me to find out people are reading and finding the site useful (hopefully).
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Still waiting on my blood tests but I guess we’ll see if theres any inflammatory markers. Trying to take it one day at a time but ugh, the waiting game is nauseating!
Mayo Clinic and Cleveland are usually my go to, but it seems like there isn’t too much variation in information specifically regarding single cotton wool spots across many medical journals.
Hopefully the residents you work with can provide you with a little bit of ease if anything comes up. I was also reading through your posts regarding doctor’s dismissal of women’s symptoms and couldn’t agree more. Even female doctors are extremely uncaring, I mean I have to ask to get my lymph nodes checked rather than the doctor initiating that herself. I hope that your residents are more culturally (or gender) competent in comparison to the older doctors I think a lot of us go to now.
I’m also sorry to hear about your fatigue and concentration issues. Have you tried any natural remedies? Ive been taking lions mane supplements and its helped me a lot over the last 6 months. Way more energy and my memory is significantly better. I definitely recommend at least looking into it, as long as it doesnt interfere with any other medications you’re taking. This is the one I’ve been taking: https://www.amazon.com/dp/B07Q9MSZQJ?psc=1&ref=ppx_yo2ov_dt_b_product_details.
And yes, it has been wonderful finding your page and seeing how interactive you are. Especially enjoyed reading through your COVID posts because it felt a little bit of a time travel back to 2020 and my feelings at the time definitely mimicked yours. Hope to keep in touch via your platform!
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I hope everything goes well for you. Waiting is genuinely the worst thing ever. Go Zen…
As far as working with residents and doctors go – I may be just incredibly lucky, but it’s an amazing experience both as a coordinator and as a patient. I have a new resident primary care physician every three years. The people I see pursuing medicine, both in Internal Medicine and ENT are incredibly caring people. I see a huge shift in the way patients are treated, including doctors allowing/expecting patients to take responsibility for their healthcare. In the past doctors didn’t really like the patient to tell them what was going on – they wanted to tell the patient. Now, residents expect patients to be forthcoming, ask questions, and agree to future steps, much more like a collaboration than a dictatorship. That’s what I see coming. I know there are still some old-school doctors out there. All I can suggest is if you feel unheard or belittled by a physician, tell them about it. It could be something as simple as the doctor being overwhelmed with administrative tasks or having their own health problems or home trouble. Remembering they have lives and problems like their patients goes a long way to establishing a healthy relationship. Also, physician assistants or certified nurse physicians are amazing caregivers too. If there’s one thing we take for granted it’s choice. We have a lot of choices out there.
Please feel free to reach out any time – good luck with everything!
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