Sick since September 2018 but no answers - Foggy's "Invisibl...

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Sick since September 2018 but no answers

bp54321 profile image
bp54321

Hi, I’m hoping someone here can offer any kind of helpful advice because I don’t know what else to do. Starting in September of 2018, I started feeling very fatigued all the time. I was getting a lot of ear infections, eye infections, and my vision was getting weird. Everything looked more distant than it actually was. Starting in October my vision got worse, it became very blurry but that would come and go. However when the blurriness went away my vision still didn’t go back to normal. My ears started ringing, they hurt, they felt clogged despite taking antibiotics. The fatigue got worse and eventually I started having breathing problems. It felt like someone was sitting on me so I couldn’t breathe. That too would come and go. There were times I felt like I would pass out bc I was constantly light headed. I would get headaches all the time. My neck and back hurt a lot. I also noticed my stomach became very sensitive and I couldn’t eat certain foods anymore. Starting this month some of my symptoms have subsided but I still get headaches, still have ear problems, and my vision has gotten much worse. I also still have neck pain. I’ve seen so many doctors and have been tested for so many things but everything has come back normal. At this point doctors just think I’m crazy but my vision has gotten so bad I can barely work. If anyone has anything to say that can help me I would appreciate it.

Also sorry for the long post..

43 Replies

Hi bp54321. I do't know whether this helps: when did you last see an optician? Might you be allergic to antibiotics? If you still did not get a proper diagnosis by various NHS doctors, could you possibly afford to go private? A private health insurance would not pay for ongoing sickness, but you could take out an interest free loan for any sum. I am still in an awful lot of pain after waiting and waiting for tests on the NHS but in my despair I booked for an appointment at a local private hospital and tests will be this week already. Emma

bp54321 profile image
bp54321 in reply to Emma_7

I just saw an ophthalmologist which is an MD eye doctor and he just told me to try wearing glasses 🙄. I am currently trying to schedule an appointment with a neuro-ophthalmologist but it has been difficult getting an appointment. I have considered private doctors but I really couldn’t afford it. I already have so much debt from student loans I couldn’t imagine taking out another loan.

Can I ask have you been referred to any consultants by your doctors.

bp54321 profile image
bp54321 in reply to Patdoyle

What kind of consultants?

Patdoyle profile image
Patdoyle in reply to bp54321

I saw a neurologist first who diagnosed CFS theni saw a rheumatologist and ENT specialist. It depends what your symptoms are as to who you get referred to but in my experience the GPS knowledge was very limited.

bp54321 profile image
bp54321 in reply to Patdoyle

I have seen a neurologist, an ENT, a rheumatologist, a regular internal medicine doctor, an infectious disease doctor and the ophthalmologist. No one has diagnosed me with anything yet.

Patdoyle profile image
Patdoyle in reply to bp54321

Wow none of them have come up with anything that’s frustrating. Have to say I had to keep going back to the G P over years to get anyone to listen and take me seriously. Sometimes I think the diagnosis I got was to shut me up. You know how you feel and you have to go back if you continue feeling bad. Do you get dreadful fatigue as though your body has no strength

bp54321 profile image
bp54321 in reply to Patdoyle

It’s incredibly frustrating. Yes I feel fatigued every day. Some days it’s pretty extreme, like my legs feel so weak I can barely walk.

Patdoyle profile image
Patdoyle in reply to bp54321

I feel like that too your symptoms are so similar to mine. I have vision problems some days worse than others andget that breathless feeling too but intermittent. Can’t walk too far either because my legs go weak as though they won’t do as my brain is telling them. Pain in my neck and back and feet too. I was told the pain was fibromyalgia and weakness and fatigue was CFS.

bp54321 profile image
bp54321 in reply to Patdoyle

Fibromyalgia seems to be a diagnosis given when doctors can’t figure anything else out. I had a doctor compare fibromyalgia to a somatic disorder which was actually kind of offensive. In a way he was saying fibromyalgia isn’t “real”. At this point I’m not really sure what else to do. I am very concerned about my vision though. It continues to get worse

Patdoyle profile image
Patdoyle in reply to bp54321

My family don’t accept my diagnosis never mind the doctors. I get the feeling they think it’s psychological. I keep trying to do stuff but the terrible fatigue overwhelms me. Don’t like watching the tv anymore because of my vision.istill think you have to keep searching for some answers. Are you managing to work?

bp54321 profile image
bp54321 in reply to Patdoyle

Work has been so difficult. I heavily rely on my eyes at work so it’s a lot of strain. Part of me feels like I need to change jobs. A lot of doctors have told me it’s all in my head and I’m just stressed or depressed. It’s ridiculous. I want to be better so I will continue looking for a better doctor that can help me

Patdoyle profile image
Patdoyle in reply to bp54321

I was only taken seriously when I told the GP I couldn’t do my job anymore

bp54321 profile image
bp54321 in reply to Patdoyle

Hmm maybe I have to say that then

LornaAnne_X profile image
LornaAnne_X in reply to bp54321

2true!! The diagnosis is an absolute cop out.. & very insulting!!

Someone offered where you’re likely to get some resolution - a neurologist and/or an opthma neurologist. It sounds like there may be an aberration in your brain. If it’s an aneurism it will get fixed quickly. I’d inquire at your local med school hospital for quick service. Best wishes.

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bp54321 in reply to Vertical

Thank you. I appreciate the response. I just got an appointment with a neuro ophthalmologist in a few weeks

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Hidden

Hi - ME is associated with light sensitivity. You need special lenses to screen out excess light. If you have fluorescent light at work this will further irritate your eyes. Grey tinted glasses might help with wrap around frames to prevent light coming into the side of your eyes. I have found special acetates can help to screen out light so you can read print on different colour backgrounds more easily. I can't see white writing on pale green or yellow backgrounds, but can manage black on white, or white on black. There is a website in the UK where you can test your visual stress levels by pieces of text being put on different colour lays. It only does several colours in this test but some were much clearer than others. In the end I bought four different colour acetates, and use them in different lights

and it did make a difference as to how much light there was in the room. Will forward address. I use the tints on my computer too even though I have different colour reading lenses ranging from dark blue, grey and clear.

bp54321 profile image
bp54321 in reply to Hidden

Thank you I appreciate it

Hidden profile image
Hidden in reply to bp54321

colour2c.co.uk. Will send you other info links which are useful, I have inner ear trouble and my balance is affected as well as my eyesight. This is a recent type of ear and eye problem related to infection, and sinus problems.

bp54321 profile image
bp54321 in reply to Hidden

I’m thinking my issues may be related to infection or sinus problems. Before all this started I was getting so many ear infections. Maybe it damaged my inner ear somehow?

Hidden profile image
Hidden in reply to bp54321

You may very well be right. If you are getting vestibular or ocular migraines, with balance problems this is interrelated. wbmd.com/migraines is helpful.

A test for your balance and eyesight being part of a vestibular disorder is to stand

with legs apart, put both arms straight ahead. Then shut your eyes. If you feel yourself swaying or moving backwards and forwards this might be a sign of inner ear and eyesight, which gives rise to your symptoms.

Do this test with someone near you in case of fall.

If you have fibromyalgia or ME which is indicated in your consultation, these are both autoimmune diseases. Though ME is triggered by continued infections and viruses, you might find you have a combination of auto immune problems which might be helped by a complete change in diet. I found out from food intolerance tests, that I have a lactase and dairy intolerance. Ordinary cow's milk is the allergen for some. More dairy in the diet increases a build up of mucous, and inflammation in your sinuses. Cutting down dairy using lactase free milk, may help your sinus and ear. I am prescribed an antihistamine every day which helps, but I have to avoid a whole range of histamine creating food intolerances, which can make my symptoms worse. I have multi grain, egg, dairy and banana intolerance. It sounds ok until you start shopping and you can't find anything you like to eat! As thyroid is a major autoimmune, as well as diabetes - then these should be ruled out with tests.

Gluten is a known allergen in thyroid in thyroid and celiac disease, but multi grain

including wheat rye barley maize, rice barley malt mayonnaise malt drinks beer lager whisky may all affect your histamine levels and is now recognised in the US as affecting your whole immune system.

Poor vision tied to poor balance is described in medpagetoday.com/opthalmology.

An article by suzycohen.com a pharmacist goes into depth of symptoms from

antihistamine response to certain foods She is a US pharmacist who has written books and articles you can read on the net concerning food intolerances.

Have heard that a vegan diet can help some, transforming their symptoms within a few days. A friend has ME and has to wear chromatic lenses which are yellow - she had to find a specialist optician who understood the photophobia which can occur

with ME. I can say - the change in tinted lenses, from an optician who specialises

in refractive lenses for your sight problem helps.

bp54321 profile image
bp54321 in reply to Hidden

I’ve done the balance test you mentioned above but I was able to stand still. There was no swaying or movement. I’ve also had my thyroid checked and my thyroid was normal. Perhaps I can look into the food intolerance issue. I have noticed that since I started eating more healthy (very little dairy, low sugar, low carb, no red meat) about a month ago a lot of my lightheadedness has gone away and the fatigue is not as bad. However my eyes, ears, and neck continue to bother me. Also, from the minute I wake up to when I go to sleep my vision is never normal. My ears also bother me all day long. There are a few moments where my eyes and ears don’t bother me as much but there is never a moment where they feel or function normally. The neck pain comes and goes. Thank you for the information you have provided.

Hidden profile image
Hidden in reply to bp54321

BP and head and neck tension can increase muscle tension in the neck.

Massaging the bone in the centre of your neck behind, at the level of your ears, can help tinnitus and balance. Massagebyheather.com on you tube is great to show you how to drain the lymph away, in your neck, and is relaxing. Helping lymphatic drainage can helppost infections. I went to an ENT who gave me sinus drain, and surgery to free my airways, from a deviated septum. it was a miracle - my balance returned to normal overnight. I also had exercises for head and neck which help.

I went on stemetil which helps the inner ear nerve to help balance it did help.

Know how you feel.

bp54321 profile image
bp54321 in reply to Hidden

Thank you so much. I’m not sure if this could be work related, but I am hunched over at work all day. I do feel like my symptoms are worse while I’m work. My neck definitely bothers me more at work. I will try these massages and see what happens.

Hidden profile image
Hidden in reply to bp54321

Head neck posture might be affecting you. Head neck exercises may help. Slowly move your head from left to right and back. Then drop your head, raise it the turn head and neck from side to side very slowly. Computer should not be used continuously for more than twenty minutes to half an hour. May be changing your posture and sitting upright for several minutes before going back to computer might help. No need to reply.

bp54321 profile image
bp54321 in reply to Hidden

Well I don’t use a computer at my job. I’m an esthetician so I’m hunched over to do facials and other skin treatments. Maybe I’ll try to fix my posture.

Marz profile image
Marz in reply to bp54321

How normal was normal for your Thyroid ? What tests did you have ? TSH - Ft4 & FT 3 ? Anti-bodies TPO & Tg to rule out Hashimotos ? Also B12 - do you know your level ?

Have you ever checked your house, walls, bedroom, etc... for mold? Mold can cause all kind of neurological, sinus, allergy symptoms.

bp54321 profile image
bp54321 in reply to designguy

I asked my landlord about it and she refuses to pay to get the house inspected. I guess I could hire someone myself.

designguy profile image
designguy in reply to bp54321

I'm not sure where you live but in the US we can buy test kits for mold at a hardware store and online and do the testing ourselves. The kits come with instructions and where to send it in for the test results.

bp54321 profile image
bp54321 in reply to designguy

I bought a test from Home Depot, they charged my credit card but never gave me results. I’ve tried many times to contact the company but never got a response. Huge scam :/

Have you looked into Myalgic Encephalomyelitis, aka Chronic Fatigue Syndrome?

You can ge t details at solvecfs.org and the forum Phoenixrising.me. It’s a nefarious illness often arrived at by everything else being ‘normal’.

bp54321 profile image
bp54321 in reply to Vertical

No I haven’t looked into that. I can ask my doctor about it next visit

Vertical profile image
Vertical in reply to bp54321

Regrettably, medicine is not widely aware of it’s full ramifications. Lots of research in last 30 years but it’s where multiple sclerosis was 50 years ago. You might want to get some insight by looking at the above sites and cdc.gov.

You could very well have to inform your doctor since it’s just now getting into medical school curriculums. It can be be viral or immune system dysfunction and can come on slowly or fast, mostly with adults ages 40 - 60, though pediatric as well. No cure to date; just palliative treatment.

What part of the world are you located? I’m in USA and I’ve had it for 25+ years and it has progressed to the point where I’m 80% sofa bound. I hope you don’t have it. Best wishes.

bp54321 profile image
bp54321 in reply to Vertical

I’m in New York. I’ve heard so many different explanations at this point it’s overwhelming. One doctor thought I had some random neck injury, another thought my sinuses, another thought stress, another thought I have some sort of circulation or blood issue

Cryptic or ‘invisible’ illnesses can take a long time to get diagnosed. In the interim we tend to get more stressed out with the uncertainties. Then, you a diagnosis but you never really know if it’s the right one. Total frustration not to mention anxiety and fears!

I’m in Atlanta, GA and have followed the research on MECFS for many years. Everything seems to fit it being precisely MECFS for me even though the symptoms are all over the board. I got the diagnosis early ‘90’s after running the gamut of normal results from specialists.

There’s a leading clinical doctor in NYC who treats this illness. Top reputation. I think her last name is Levine. She likely would be able to diagnose you and she would be a good place to start if you so choose. Or, maybe she would refer you appropriately. There’s also a Dr. Lipkin at Columbia but he’s more into research.

bp54321 profile image
bp54321 in reply to Vertical

Ok that’s sounds great. I will definitely look into that thank you

FYI, Dr. Susan Levine's office is in the Upper East Side of Manhattan, about a mile north of Trump Tower. Her address is 115 E. 72nd St. She has a small office and it seems like she meets with all her patients herself rather than relying on physician's assistants or nurses.

Good luck.

*UPDATE*: I recently had a follow up with an infectious disease doctor and I tested positive for Epstein-Barr. He said the test only proves that I have been exposed to it, not when I was infected, so he’s not sure if I’m currently having a flare up from Epstein-Barr or if there’s something else going on. He told me to continue seeing other doctors about my symptoms but he thinks Epstein-Barr could be the reason why I have been sick.

You have TMS. Google Dr. Sarno and buy his book. Your issues are real, but not physical and the doctors you are seeing cannot help you. You can and will be well again soon. You just need the resources to heal.

Hi .

Just seen your post.

I have pretty much the same symptoms as you. Started about 5 years ago now and taken all this time to find an answer. I will list my symptoms and then tell you what I eventually got diagnosed with.

Eyes watery, blurry vision

Ears Tinnitus

Jaw , neck, shoulder and back tension, real bad pain

Occasional bad headache

Unbalanced feeling

Nausea

Ibs, nervous stomach vs constipation.

All this made me feel very anxious and panicky, so I was labelled with anxiety and had counselling, to no avail.

Few years of every test, scan under the sun! Tried some drugs, but don't really like taking them. So settled for the odd 2mg diazepam as needed and the same for an anti sickness pills.

A chance visit to the dentist, when I told him about my jaw pain and that my teeth felt saw sometimes, the ear ringing and watery eyes.

He said I seemed to be a jaw clencher, and that it was Temporal Mandibular Disorder. Apparently you clench or grind worse at night, but can also do it as a concentration habit.

Anyway, long story short. He made me something they call an SCI, sleep clenching inhibitor. It clips on your front teeth at night and stops your back teeth bearing down each other with enormous pressure during the night. It's worked like an over night miracle. Who'd have thought eh?! When I've been having brain scans and endoscopys!

Google TMJ or TMD symptoms, see what you think.

Good luck and I hope you feel better soon.

Jenny x

You absolutely must push your doctors to drill down and look for underlying problems. Do not take their word for anything. The reality is that Dr's do not investigate enough to find out what is actually going on. I have numerous things ailing me but my Dr does not seem to know how to multitask. Keep on pushing.

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