Undiagnosed illness making life a misery

kangaroo

I don't have any lupus-like rashes but my eyes are sensitive to bright light: I am housebound with ME/CFS so am not exposed to too many bright lights: I have white blinds which I pull down in a room when I go into it: they let in light but not reflections: if I get a reflection e.g. off the windows of the house across from us, I often get headaches a few hours later.

I wear a baseball cap in the house to keep out overhead lights from my eyes.

In good weather, I used to wear clip-on sunglass covers on top of my prescription glasses, but I found sometimes light/reflections came in from the side so I know wear wrap-around sunglasses.

_Whimsical_

spookwoman wrote: »

@ Whimsical. It was the first thing I said to him about the lighting was killing my eyes. I'm very carefull with the sun as it is. Because the symptoms have gotten worse since xmas I havent really been out and I have noticed that the lighting in tesco makes my eyes sore but I dont be there long. Now I know better back in Hospital yesterday with sunglasses, factor 50+ and the hood of my cardi up. Seems to have helped didnt get the shooting pains like last time. I've done my own research on uv lighting and where it comes from and the energy saving bulbs uncovered are not good so I get the ones with the outer bulb that cuts down on the uv. I already know and have had the effects of cleaning chemicals.
I know someone else who has lupus symptoms inc the malar rash and she gets the negative ana. Finally found a rheumy that has said she has lupus and is getting treatment. Read a blog of another lady same thing negative ana and lupus runs in her family but for years no one listened to her.

Thanks for the reply spokeswoman. What you describe sounds very familiar. I've been horrified at the state that 10 mins in the sun has left my mum in. A rash,terrible headaches and shooting pains throughout her whole body and it continues for days if not weeks. Thats very interesting to know that there are some UV bulbs with an outer bulb,I'll pass that onto her immediately as she'd hoarding old style light bulbs like mad and now she's rationing what's left of the supply. That's interesting you have the chemical problems too. It is also a difficult one to fully deal with.

Did the lady you know with a negative ANA test that has got treatment found it helped?

It's all so confusing sometimes. So hard to know whether to accept what the dr tells you or continue pursuing something different.
Thanks for the reply though, she'll be heartened to know someone else has these seemingly "odd" reactions. People who have not experienced it seem to find it impossible to understand.:)

kangaroo

Some people might be interested in this group:

Spectrumalliance: Campaigning for the approx. 2 million people in the UK adversely affected by modern lighting.
http://www.spectrumalliance.co.uk/

spookwoman

The old crt monitors and tv's are terrible for emitting uv so are halogen bulbs. You can get ones with a uv protector on them. I also find if I dont go out till the evening and still cover up it helps alot. factor 50+ cream, long sleeves and long trousers plus a hat. I usually get headaches from the sun but last week for so I have "aura migraine" so that might be the reason no headache.
The girl I was talking about she hasnt started treatment yet but will be soon as soon as she gets the appointment. She went to a lupus meeting and managed to corner the doc there and showed pics of rash and was told def lupus and get doc to refer to her.
Very true people don't understand unless they live with the symptoms and its amazing the amount of people who are uv sensitive.

_Whimsical_

spookwoman wrote: »

The old crt monitors and tv's are terrible for emitting uv so are halogen bulbs. You can get ones with a uv protector on them. I also find if I dont go out till the evening and still cover up it helps alot. factor 50+ cream, long sleeves and long trousers plus a hat. I usually get headaches from the sun but last week for so I have "aura migraine" so that might be the reason no headache.
The girl I was talking about she hasnt started treatment yet but will be soon as soon as she gets the appointment. She went to a lupus meeting and managed to corner the doc there and showed pics of rash and was told def lupus and get doc to refer to her.
Very true people don't understand unless they live with the symptoms and its amazing the amount of people who are uv sensitive.

Do you know the name of the Dr that she saw by any chance?Is he in Ireland?
We learned the hard way about the Halogen lights, we have them in every single room!We use lamps with ordinary bulbs now. When I think of the years she suffered because of them and we had no idea they were causing it. There should definitely be more awareness of these things. Thank you again for replying .

IzzyWizzy

I've been told that my Vitamin D is very low and I need to have an injection. The nurse seemed to think this alone could be the cause of many of my issues, but they also seem to have lost my ANA result. :rolleyes: I see there is a loose association between Vitamin D and lupus and other autoimmune diseases but it also seems that it's quite common for people in N Europe to be deficient because of the lack of sun.

Anyone else had this?

goat2

Undiagnosed wrote: »

Hey

Not sure why I am posting this. Never really posted on forums before, but just thought I would see what I get back.

For the past 2.5 years my health has being going down hill. The run down of this is:

- Chronic stomach problems. In pain everyday
- Weird pressure in my head. It starts from my neck and then basically my head feel like it's going to explode. Hard to focus, eyes feel like they are going to pop out. I have this every day to some degree.
- Pain in the center of my chest. Not sharp. Dull, I usually hold my chest in for a small bit of relief, but not much. I sometimes feel like I am going to just drop dead as it can make me miss a breath. Really odd feeling. I have this every day.
- I have really bad joint pains everyday.

I am 32. I feel like I am 100. I am fit (go to Gym), slim (I can't put on weight, which I have been tested for as well). Over that 2.5 year period I've had every test you can name and a bunch of x-rays, MRI's. I even had an operation because they said the pressure in my head could be related to my nose, I knew it wasn't, but went along with it. That was a joke. I have been diagnosed with the following:

- Chronic IBS
- fibromyalgia
- Migraine-Associated Vertigo (http://www.mvertigo.org/)

and of course a lot of, your stressed, you work too much, anxiety. I don't talk about this to people anymore as I just get it's probably this or that and it's near impossible to explain how utterly horrible I feel everyday.

Luckily everything bar my health is going well, job, relationship and I am generally happy. But I am in pain, discomfort and feel odd every day. 2.5 years is a long time, but i have no idea if i can put up with this indefinitely. I don't really know what to do. I've seen lots of consultants, changed docs a bunch of times, read lots on the internet (i stopped because it could literally be anything), messed about with diet, just tried to ignore it etc etc.

I literally don't know what to do anymore. My symptoms don't make that much sense and I can see why docs have no idea what it is.

Anyone else have this type of problem before, when they just don't know what to do with an undiagnosed illness?

Thanks for listening

did anyone mention overproduction of acid, it causes the pain you have, as i have this and have to watch what i eat,

goat2

also have yourself checked for lymes disease, there are lots of people now contracting it here in this country and it does not show any symptoms for a long time after the bite of certain insects, if you are a gardner, walker, or into any outdoor stuff, you could be a candidate, i know someone who had chronic headaches and joint pain, had gone to every doctor and specialist, and spent many weeks to months in hospital, and in the end found out by chance that they had lymes, his problem went on for more than a decade, it is no harm getting checked for it, just a blood test at your local gp office, just look into lymes

Alun

If you're in the early(ish) stages of Lymes, yes, a blood test can give a degree of certainty regarding a diagnosis. If it's several years later then things get a lot more tricky, and the tests that there are are difficult to interpret at best. I've been suffering from some, albeit mild, symptoms that have been going on since 2007, and have yet to be diagnosed properly, but I'm convinced that there's a possibility of Lymes despite a Western Blot test coming back -ve as things started after a walking holiday in Germany where Lymes is endemic.