Hi, I have been having trouble with my eyes for probably over a month now. It started with the sparkly water like vision in my left eye. It then turned into complete blank areas in the left side of the left eye. Along with the visual disturbances I had an awful headache, my eyes were sore and red. It hurt to look to either side. My eyeballs were actually sore if I would rub my eye lid. After too many eye dr.s appointment to count they told me I had glaucoma and fluid built up behind my eye. I had the flu in the meantime and had a high fever for quite a few days. For me the worst part of this flu were the severe pains in my legs. I mean much different than the reg. pains I have had. The flu and fever is now gone but the awful pains in my legs is not. I can't discribe it any other way than when you have a high fever it's sorta like that pain constant down deep almost seems like bone pain. I finally was able to see the neuro-opthamologist yesterday. She thankfully ruled out macular degeneration and retinal detatchment. She did say that my optic nerve is tilted most likely due to the fluid build up. The visual disturbance sequence (for lack of a better term) has happened three more times. Each time there seems to be a larger area of vision impairment. Now I have to back up a bit a couple of years ago I was diagnosed with fibromuscular dysplasia. I was diagnosed this because my blood pressure was sky high I was admitted to the hosp. they found a renal artery stenosis. The artey was stented twice and my pressure has been down since. I did not do any research on FMD thinking if it was a systemic chronic problem they would have mentioned it. I am now told that this condition can cause the exact vision problems I am having, it can also cause the awful pain in my legs that nothing will touch. During all the years of being diagnosed with autoimmune disorders and fibromyalgia took it's toll on me emotionally. The symptoms of these diseases do overlap and can be miss diagnosed which I'm sure each and everyone of ya'll know. I would like to know if anyone is running into this problem. I have been told that they lable people with all of these overlapping symptoms with "mixed connective tissue disease" It's so hard to pinpoint which disease is causing which proplem. For me this makes it difficult to come up with a treatment plan that I can follow. Has anyone even heard of FMD? I would love to hear of anyone who is having the symptom chasing problem. I am suppose to now have a brain angiogram and othe artery tests.So many tests so many times. I have very random thoughts when I talk and when I write. Sorry for the rambling.
Long before my "offical" diagnosis of fibromyalgia my eyes started bothering me,blurred vision, severe night blindness, eye pain. and the feeling of dirt in my eyes. I have found that restasis helps. I visited with a D.O. who specializes in the treatment of fibro patients, the optic nerve if it is inflammed has a direct link to the pituitary gland, you may want to research this yourself, the optic nerve can sense distress or inflammation of various internal organs. All of my symptoms overlap as well, I've heard the diagnosis referred to an Immune Dysfunction Disorder. Honestly, Im barely hanging on any more, you dont have to apologize for your random thoughts, I am all over the globe sometimes, just wish I could jump off..........
Hi Janis,
I took the liberty of looking up your illness and it's really imperative that you also read up on it ASAP. Untreated, it could have some serious (very serious) medical issues. I don't know how else to get across to you that you must educate yourself on this illness. It's surely NOT fibro causing your symptoms. Here's a really good website I found on the topic: http://www.mayoclinic.org/diseases-conditions/fibromuscular-dysplasia/basics/definition/CON-20034731 It offers good information about FMD as well as how it's treated:
"Basically, with fibromuscular dysplasia (FMD) is a condition that causes narrowing (stenosis) and enlargement (aneurysm) of the medium-sized arteries in your body. The areas of narrowing and bulging occur next to each other and can cause the artery to narrow so much that organs that receive blood from the artery are damaged.
"Fibromuscular dysplasia can cause a number of complications, such as high blood pressure or tears of the artery (dissection), if left untreated.
"Fibromuscular dysplasia appears most commonly in the arteries leading to the kidneys. Fibromuscular dysplasia can also affect the arteries leading to your brain, abdomen, arms and legs. While there isn't a cure for fibromuscular dysplasia, it can be treated effectively."
So, as you can see, it's NOT fibromyalgia. It's a distinct illness, one that your doctor needs to help you manage. I'm really glad to hear that you're getting assistance from a doctor. I have no idea why your last doctor didn't tell you anything about what FMD is, how serious it is, or how it's treated. I am SO sorry that you had episodes like you mention above. i would be terrified had the eye issue happened to me. I give you SO MUCH credit for getting through it and not being incapacitated from panic.
The article suggest quitting smoking if you are a smoker and also eating healthily. I have no idea about what works with treating it but those two suggestions surely seem to be sound.
Bless you, get your treatment so you can get better and never, ever have something like that happen to you again.
Hugs and comfort,
Petunia
Hello Janis, I'm sorry that you have this awful disease I am not familar with FDM.I suffer with my eyes so bad, sometimes it feels
like i'm being stabbed with a sharp object sometimes its gritty and sometimes its dry and I rub them so hard and long I also have 2 pitutary gland tumors I have to wear bifocals to see/read, but the eye doctors can not find any problembs say I have 20/20 vision. complications from fibromyalgia is very challagening . I pray you find an answer in the meantime do your best to stay positive and hopeful maybe someone else will read your post and offer help .. don't worry about rambling that's what we all do!! i hate it with a passion I think I'm going start recording what I need write, because I can't spell anymore either..Love and Blessings and gentle hugs, bobbye
Hi Mrs Bobby,
I get the dry and gritty thing going on in my eyes. Feels like a lash is in my eye. Like you, I'll rub and rub but get no relief. Happens to both sides. I've heard that there are some very effective eye drops for this. The stabbing sensation I'm not familiar with. Could it be a migraine or sinus issue? Have you spoken to your doctor about it? if not, i think you should although i wonder if it is, indeed, fibro, since fibro causes stabbing pain elsewhere.
And like you, I have vision problems now that fibro has descended upon my life. It hits the most when I'm trying to read my computer or trying to look at objects in a store that look fuzzy. Glasses don't help. i think it's the fibro! Sounds like you might have the same problem with your fibro, possibly!
One site has this to say about eye problems:
Eye pain means a burning, throbbing, aching, or stabbing sensation in or around the eye.
A foreign body in the eye also gives a similar sensation.
It does not mean eye - strain or tiredness in the eyes.
It should never be taken lightly as it concerns the pathology of an as delicate an organ as eye is!
If the pain is associated with vision loss to any extent, it must be taken as an emergency and immediately attended to by a doctor.
This sounds like good advice for all of us.
Hugs, if I can see ya!
Petunia
Has any doctor ever mentioned MS as a possible diagnosis? Two of the most ommon symptoms with MS flares can be visual disturbances and painful muscle spasticity. They thought I had it, and I still take an MS anti-spasticity drug for my muscle pain. I know you saw the neuro-opthalmologist, but maybe a visit to a neurologist might help. My neuro was who ultimately diagnosed both my fibro and my lupus. Just a suggestion…
(And btw, I’m not meaning to scare you, MS is a lot more treatable than it used to be, - and a diagnosis and proper treatment could actually make for improvements in your quality of life, considering how many problems you’ve been having.)
Good Morning Petunia! read ur message this morning thanks for your
advice and input. My eye situation has been happening for years now
and the drs are not sure what is happening, Ive been seen and tested by
all the Specialist can't recall all of them right now I do have my years
of medical files though, the neurologist referred me to A specialist where they test
eyes different from your basic eye exam because they thought maybe the 2 pitutary
tumors that is bsically behind your eyeballs was causing the problem but Mri
didn't show it being the problem because they were small and tend to grow slowly
mines have been pretty stable, They did however say that for some reason it hard
for my eyes to adjust to change in the lighting for example going out in bright sunlight and
going in side and my eyes are slow to adjust( go figure right) anyways sometimes you just
get tired of running back and forth to appts and finding no cause or cure for one problem then
you hit with another Fibro Mystery I do use eye drops from time to time for the dry eyes.. You
Made My Day with Hugs if I can see ya! so right back at ya!
MrsBobbye
{{{{{{{{{{{{{Janis}}}}}}}}}}}}}} I'm so sorry you're having to go through this. I do appreciate your posting this because some of your symptoms I have also. I will get the deep pain in my calf muscles from time to time. When it happens it seems to trigger muscle spasms in my feet that also seem to travel up my leg to that pain in the calf. Not sure what it is. Since I am on of those who fell through the cracks in Obama Care and the 24 month waiting period for medicare eligibility, I have no insurance. My doctor is being understanding and helping me to just maintain right now, but she has a slew of tests that she wants to run on me once I get medicare. She also wants to send me to an ophthalmologist
Knowing what everyone on this forum is going through helps me with all of this so much. We know we're not alone. And I can make some sense of new and unknown symptoms that crop up with me.
I sure hope you get to feeling better soon.
***gentle hugs***
.
I saw a neurologist four years ago. He was very nasty and rude. After my first visit looking through the tons of records that I brought him he said “you’ve got ME” who’s been treating you? I proceeded to go through all the tests he ordered. On my return visit to hear test results he in his nasty tone said “you’ve got white specs in your brain MRI”. when I asked him what that meant he said maybe nothing they are small and non specific. I was then told that MS is most difficult to diagnose. I was trying to ask questions but his attitude had me nervous. Finally he growled “you already have fms and sjogrens and other autoimmune diseases what more do you want.” I began to cry and answered I want nothing but answers and some relief and then just walked out. I have not been back to him. I know I’m not alone with the grumpy doc situation but it kinda makes you gun shy. So maybe I do need to have that re-explored.
Mixed connective tissue disease is what diagosis they give you before the real autoimmune syndrome becomes clear, which sometimes it never does. The visual problems seem to be a "rule out" sort of a situation and they are obligated to go thru the tests to cover the eventuality there might have been something like a stroke behind the visual losses. Or TIA's. transient ishemic attacks. Autoimmune diseases are absolutely the hardest! Treating them is is a mixed bag of crazy. the best thing to improve the immune system is to detox yourself and your environment ( not so easy) and keep as happy and stress free as you can manage. I think running to see doctors too much can be contributory to stress, but it may be very necessary in your case because vision is a very serious impairment to have. FMD? did they take a biopsy? I think that is a biopsy confirmed diagnosis. If you have a good naturopath in your area they can go over some obvious problems that you might correct with lifestyle modulation. I find the problem with doctors is they don't really have the time to spend to get a full picture of a person with autoimmune diseases so they send the patient off to ever more specialists, who have even less time to spend to get to the root of the problems. So many doctors these days want to write you a script and offer the best and most advanced testing to "rule out' but the sad truth is that they don't have good treatments for many autoimmune manifestations. Sometimes it's what you have to stop doing to start to get better. For me, a big part of my getting into FM was "pushing" too hard all my life. Now I, of necessity, have to take it easy. And not beat up on myself for being unable to go at things full tilt.
Hope you have many better days ahead!
Hi MrsBobbye,
I know, it's tiring going from doctor to doctor, especially when they tell you, "I don't know." Well, at least that's fair. i hate the ones who tell you what it ISN'T (the thing you were tested for but were negative for in tests) but don't bother to tell you where to go NEXT.
I can't help but wonder if the stabbing sensation is a fibro amplification of the "grit" from the dry eye? Or else nerves misfiring? i know I get that sort of a sensation from the knees on occasion and then my left elbow did it this week. Oh, if only we had half the answers, we'd be happy!
I'm glad that my hugs helped you out. And that's why we're here. To offer our hands to everyone who needs that lifeline back to feeling like a human again. Because you are, we are, we just don't feel like it at times due to the fibro.
Gentle hug tonight, sore elbow,
Pet
Dear Janis,
After my GP finally realized that there was more going on with me than a car accident, his first diagnosis of me was "overlap syndrome'. http://www.med.usyd.edu.au/rheumato/Reum_PDF/Teaching/OVERLAP.pdf
Seven years later I, we finally found a Rheumatologist who could completely define my problems
Psoriatic Arthritis (spondylitis type) Primary
Sjogren's Syndrome Secondary
Rayanud's Phenonmenon Secondary
Fibromyalgia,
Costochondritis,
Spinal stenosis,
scoliosis...
The lost goes on, but you get the picture? And they keep sending me for brain MRIs suspecting SLE or MS to be added to the mix. The physical and emotional toll is huge, it's a process to accept, if you ever fully do!
I had that flu too, it was the worst flu I've ever had! I still have not resumed the Enbrel, not sure an immune suppressant is really the drug for me, I had one hell of a time getting over it!
My heart goes out to you, it's a tough road to have so many things to drag around with you! Just don't give up! We're all here for you!
Wishing you WELL,
SK
Janis, I hate to even whisper the word, but could MS be causing your symptoms as well? I've been reading up some on it and the eye problems and the leg pain sounds familiar to MS. I am no doctor and might be waaaaaaay off base (hopefully) but have you been tested for it?
SK gives a good picture of how these stupid diseases can all hit one person.
I hope and pray that your vision is better and those symptoms STOP.
Hugs,
Pet
Hi SK,
So happy to see you here again! I'm hoping to feel well enough to get on the horn to you. And I hope you're doing ok as well. We have a lot to catch up on, my friend! If i can get my back to stop shrieking at me, I'll be able to call.
hugs,
Pet