I am interested to know...

[lorna]

do you tolerate the gabapentin well ? My gp suggested i take it for my pain but my neph said no way beacuse its too dangerous for someone with kidney problems. He said it messes with their nerves and makes them very sick and have a horrible reaction...could that be your dizzyness? i take dilauted and it works well! Also i dont do anything to prep for treatment but personally i like to fall asleep it makes the time go by faster!

[KICKSTART]

A friend of mine has Lupus and cannot stand the sun , she has to cover up all over , so i guess this is similar for you ? Nothing will ever be done about the lighting in hospitals im afraid ! The fluorescent lights give me a terrible migraine type pain in my left eye and despite seeing a specialist about it and him writing to my unit to say can i go in the small dark room thats available they take no notice, so i have to endure nearly 5 hours of this but then it continues into the next day , so i can understand some of what you are saying. But they will never change the lighting because we are in a minority ! Just to make it clear , when you refer to SLE is that the Systemic Lupus ? Only my friend get treated at Leeds and they put her on an iv drip (i dont have the details) but she says it helps no end. Maybe you should contact someone at the Leeds Hospital ?

[kristina]

Thanks for your reply, KS, you are absolutely correct.
Like yourself, many girls, for example, at Supermarket check-outs, who sit under fluorescent light for hours,
have nagging headaches etc. They told me so.

Again, you are right that nothing will be done about this because, yes, we are a minority,
and also it would cost billions to change back to normal filament lamps. (... Not to mention the Green-issue...)

I encounter exactly the same problem as you in that hospitals have no provision for allowing patients like us
to sit in a room without fluorescent light. It seems amazing that a hospital cannot cater for this problem.
All they need is a few small rooms with a desk lamp with a filament bulb and that would be ok.

Yes, the sunlight is also a problem and again all that can be done is to avoid strong sun-light,
and wear appropriate clothing, creams, dark glasses and a wide-brimmed hat etc.

As for your friend having some type of drip, I have no idea what this might be,
but they have different procedures for a variety of conditions within Lupus-treatment.

Just to clarify the terms, SLE is Systemic Lupus Erythematosus, and MCTD is Mixed Connective Tissue Disease.
Both of these are systemic diseases, which means there are interreactions with all parts of the body.
MCTD is more an umbrella-term under which you could put SLE along with other interconnective tissue disorders,
which might fall outside of SLE. It appears that each patient with SLE/MCTD has their own pattern of symptoms
and each patient has to be treated individually and this makes dealing with/treating this disease so much more difficult.

My particular difficulty is multiple drug-intolerance (intolerane to many tablets and treatments...) and allergies
(which are not uncommon symptoms among SLE-patients),
so this further complicates dealing with issues surrounding my SLE/MCTD, my ESRF and Dialysis (if and when I need it).

It is because of  these basic reasons that it has been difficult for me to find specialists
who would be willing to organize, support and treat my health and well-being.
Quite often my health issues and medical history overwhelm medical people
because they have no real answer – not even a room for me to sit in without fluorescent light.
It would be a welcome relieve for me to find a doctor who had the character
to work with me to manage the multiple medical problems I have
which this disease creates, particularly now as I am in ESRF.

Thanks for the input on this thread,
I think several interesting points have been brought out.
Much appreciated, Kristina.

[KICKSTART]

Would it not be worth a call to Leeds Hospital? Its Leeds General to see if they could point you in the right direction? I presume you havent contacted them before? As for the lighting all you can do is protect yourself as best you can . Sooner or later dialysis is going to happen, so you just have to figure out the best way to get through it .

[kristina]

Thank you very much KICKSTART, I think you hit the nail on the head,
we just have to do the best we can, using what information we can gather,
in order to make an informed choice.

Thanks for the suggestion of Leeds Hospital, it is something I shall look into.
I have got another possibility which is in the pipeline, so I hope in some way
matters might resolve themselves.

Thanks again from Kristina.