Anybody here have CFS?
Anybody here have CFS?
The Dry Eye Zone
yes bwtween ic and dry eye I live in fog
yes im sleepy and tired all day due to dry eyes , i cant even do some daily tasks
Do you mean CFS as in ME? Unfortunately CFS has been used to describe so many things and I am wondering if you mean the former ME? If you do then that was I was officially diagnosed with over 20 years ago, but over the years other things have come into the fray although I am sero neg for sjogrens. I think the US has used the term CFS for longer than the UK. I just dont think it describes the misery of all the other symptoms, some folk still think it is just feeling tired, if only heh. Is there a correlation between CFS and dry eye's then. I have been a member of some of the association's over the year's and it is only recently that I have noticed some people have complained of dryness. You have got me interested!
Yes, I do mean the former ME. Not a well understood term. I have known several people with CFS and I know it can be disabling. The name is sort of like "dry eye": A definite misnomer which leads to misunderstanding and trivialization.
I can't say that I have any reason particularly to believe in a link between CFS and dry eye - but over the years I've noticed 'coincidences' (or comorbidity I should say) which make me suspect possibly related conditions emerging on the bulletin boards from time to time. So after a conversation with someone the other day who has severe dry eye and increasingly disabling CFS I thought I'd put out a feeler to see if many people here have CFS and if so if the timing correlated at all with their dry eye onset.
For some reason I always thought of CFS as one of the auto-immune diseases though I understand after reading up for a bit that that is not established. But auto-immune diseases seem to like company so from that perspective I wouldn't be surprised to see people with auto-immune dry eye, e.g. Sjogrens type, here that had auto-immune type CFS.
The Dry Eye Zone
We've got no sign of myalgic encephalomyelitis specifically or chronic fatigue, but various other inflammatory pathways including intracranial hypertension. Maybe any immune dysfunction or autoimmune condition can cause eye inflammation and/or make the glands dysfunctional depending on the pathways. We've been talking to people here about lupus, erythromelalgia, allergens, food intolerances, and thinking about inflammation triggers. Poor thing's on a doc-supervised elimination diet which is helping - gluten, sugars, dairy - + fishoil + supplements - does this help with ME or other chronic fatigue?
On correlation of onset: dry eyes and meibomian gland dysfunction happened way before skin signs but correlated with hormone change (pre-puberty + maybe adrenarche) + post-viral. (I still think this mess was triggered by using hydrocortisone cream, PubMed 'child steroid rosacea', wrecking the balance of the immune system.)
But it seems the triggers for immune disorder can be any virus, bacteria, drug etc invasion and an over-response or dysfunction, especially with genetic predisposition. (We have multiple sclerosis in the genes which is also demyelinating including the optic nerve sheath; but not in LM, whose obvious pathways are vascular, cerebrospinal fluid, steroid hormone, lipid metabolism.)
So this must also be why some people get dry eye relief supplementing to help the immune system and looking for sensitivities and triggers.
It's also good with inflammatory immune conditions to have optic nerves monitored by visual fields and retina exam, as well as anterior segment, especially with headache, which people may not realise.
As an example of different chronic immune inflammatory pathways, in case it helps anyone to think about their own immunology, she also has:
- idiopathic intracranial hypertension (originally prompted by short-course of oral antibiotic - flareups include headache, pressure on optic nerves, visual disturbance)
- bowel cramping
- vascular flush on limbs and Raynaud's-type icy cold hands, rosacea
We're correlating ICH flareups with post-virus, exam stress. We're correlating eye flareups with diet, lack of sleep, skin infection, post-virus. We got referral to Immunology on the basis that systemic flareups are post-viral, so if we come up with anything interesting I'll post up, although I know some people are getting better help on diagnosis from Rheumatology or Endocrinology.
Last edited by littlemermaid; 16-Apr-2012 at 04:36.
Paediatric ocular rosacea ~ primum non nocere
I definitely sleep a lot and at times can find it hard to wake up. But I think docs are more ready to diagnose such things as thyroid issues rather than CFS or Fibromyalgia etc.. and brush it off.
I think CFS is a very complicated diagnosis and I do not think many doctors understand it. I was "diagnosed" 20 years ago after going thru a very stressful period. I did not have dry eyes at that time but had most of the other symptoms. I am beginning to have the same symptoms again after this 2 year battle with my eyes. I believe it is immune related and stress has very negative effects on our immune systems. Proper diet, sleep, stress reduction and finding Joy in my life has helped. It is a very frustrating "syndrome." I also have Hasimotos Thyroid Disease which is auto-immune and Raynauds. I believe these are all connected.
Last edited by abbygirl; 15-Apr-2012 at 16:41. Reason: added line
I have severe ME (reason for my recent disappearance from the board). I prefer the term ME over CFS because sounds silly and innocuous. I think people are still deciding what to do with the name, to call it ME/CFS or just ME, or even to make ME and CFS different conditions. So confusing, I know. I think the name CFS contributes to both doctors and lay people's misunderstanding of the condition. It is much much more than just feeling fatigued...but many doctors don't realize that, and so there are people with the diagnosis who are very mildly affected (long standing fatigue with no reason, but can still work full time if they rest on their off-time) all the way to people who are bed bound, on oxygen, and feeding tubes. Anyway, it is normal to feel fatigued if you have pain all day from the eyes, but it certainly would not mean you would have me/cfs.
Five years ago, eye pain and dry eyes was my first really bad symptom and now fast forward 5 years, I am disabled now bedbound about 95% of the time and need help with basic activities of daily living, with over 40 debilitating symptoms. Just corneal neuralgia alone is bad enough...but now with Me/CFS, there are no words to describe how bad it is.
An ME doctor told me that he has a handful of patients with pretty severe eye pain.
@abbygirl - Yep, it is immune related - it is an neuro-immune condition. There are definitely documentable immune abnormalities that can be tested for me/cfs. Here's the most recent diagnostic criteria:
After 8 months of my dry eyes onset my fatigue started. I thought it was due to the stress related to the severe symptoms of dry eyes. But now I think it is not just that. I think it is caused by chronic inflamation, like when we are tired when we got a cold or a flu.
I don't think I have ME, and my blood tests for Sjogrens are negative.
So I'm very interested either in the link between dry eyes and chronic fatigue. Maybe my fatigue is worse in the last weeks, or my eyes are better, but the truth is that fatigue is bothering me at least as much as my dry eyes now-a-days.
Chronic Fatigue Syndrome, Yes, Dry eye Cause this, cuz the Meds Currently on the market are only slightly effective, when you have pain in your eye, you wanna close em, not use em. I know I have trouble some nights looking at the computer, making my way in this world. Another thing is, Dry eye Causes me to not be outside or around AC, I have neglected my physical fitness and have become sedentary, So in a way I guess Dry eye Can cause you to become Tired, cuz You avoid things that cause physical pain for the eyes, maybe even exercises in some situation where you normally get it. I hope in the future I can get something that will make a difference so I can live a pain free life Keep on it folks...maybe we come up with something that helps the situation, cuz I sure know that right now this situation aint working for me, The pain in the eyes, never go away. I hope to get past that.
ME, CFS is very political in a way I won't get into here. Chronic fatigue, or being tired, was meant to be distinguished from CFS but it suited certain people to conflate the two to everyone else's disadvantage.
There have recently been guidelines issued by international experts with decades if experience treating patients which will hopefully change the current mess. Eye and vision problems are common and sicca syndrome is one of the symptoms mentioned in the new guidelines.
The distinguishing symptom of ME (before CFS was invented) was a worsening of all symptoms with exercise. Effort, including normal living, is to ME what pollen is to hay fever. A lot of recent research is confirming this and finding mitochondrial damage but immune system involvement is also likely, especially after years of illness. It is not normal fatigue. I was forced to do too much twenty years ago which damaged me so much I have not managed more than a few steps since.
It is very hard to describe the problems exercise causes in ME. I know I have done too much because I get a sore throat and my glands swell up, often before I feel tired (you don't have to get fatigue to have ME). One woman described it as being able to lift a bag of potatoes over your head without a problem but collapsing after lifting a spoon to your lips five times. If that talks to you, your dry eyes may be caused by ME.
However, if you have ME, or CFS even if you have been managing, the strain of living with dry eyes could make it flare up again.
I have developed various autoimmune diseases after many years of ME and I think my dry eyes may be another.
I have had CFS for many years. I developed dry eye as the result of limbal relaxing incisions done at the time of cataract surgery. It is not at all clear if there is any relation between CFS and dry eye in my case. I also have Raynaud's.
I seem to notice that many people with dry eye have a number of health problems, often related to immune dysfunction....so it is hard to sort it all out.