hi this is too wierd, confused again!

[alison34]

:unsure: Well I posted the other day thinking very few symptoms and now well I don't know what to think....Went to bed last night with the rash on the length of my legs nearly all the way up my arms(only been up to the elbow b4 now) my hands were so swollen I couldn't get my rings off and a head ache that no matter how many co-codamol I could take(within dosages of course) could get rid of!! Have decided to start a journal of my symptoms, is there anything else you recommend I keep a note of to go along with them. Could anything I'm eating or drinking be making it worse? Very new to this and haven't seen the rheumatologist yet so on no meds as yet! It was quite warm yesterday could that have a bearing on it?? :unsure: Also felt physically, but mentally just couldn't stop the brain whirring away so didn't get much sleep......Does all this sound familiar to anyone. Help!! :sigh:

[Deb11]

Good morning Alison, :)
Sorry to hear about your symtoms....I understand been there, still am there. A journal is a very good thing. As a matter of fact, woke up just before 7:00am to journal before I forgot anything. Its a difficult time, the unknown, for you right now. You say it was hot yesterday, that will contribute to the swolleness, or if you had salt in your diet, I know those things swell me up ( iam not a md, wish, but not). When is your Rheumy appointment? Once you go it may help to ease the normal tension we all had before beeing dx. I wish you the best.
{{{{alison}}} :flowers:

Deb

[alison34]

Hi
Haven't got the appointment through yet, so could be weeks even months away thats the british NHS for you! So should I write down everything like what I've eaten, drunk the weather conditions etc?
Thanks for the support, its difficult trying to get people around me to understand that all these different things that have been going on with me for years are all part of the same condition. :rolleyes:
Partner is very supportive but just doesn't understand that everything is connected to the SLE.

[raggedyann1]

Alison,

Keep separate logs is my opinion. What you hope to see with a log is a repetion of symptoms tied to a food or a place you frequent. The doctor will not care about what you have been eating, it is just to help you.
In the beginning I kept a symptoms log, a pain index log and a sleep log. When it came time to prepare for my rheumy appt it was very easy to consolidate everything for my appt. Doctors hate mulitple pages. But for now you might find your symptoms are more intense when you don't get much sleep. The pain log can be helpful for you and the doctor. For me it reminded me that i did sometimes have a decent day.

Has your GP given you anything to help while waiting for your appt with a rheumy?

Let us know how things go.

Take care,
Karen

[Rosebud]

Hi, Alison,

Sorry to hear you're having trouble. I am 39 years old and I've had Lupus for 12 years now and can relate to the swelling you are talking about. Sometimes my fingers swell up like sausages. I've never felt it was due to what I've had to eat. It usually happens after I've been over doing it. Try to get more rest and try moist heat. It REALLY helps with the pain. As for food triggering lupus....I've read about 6 books on lupus and I can tell you that they say that alfalfa sprouts have been found to trigger symptoms. They never mentioned any other foods though. They also say a healthy diet is very wise.

Take care and stay strong .... it does get easier in time. You really do get used to it and as you learn more you start to learn how to control the symptoms.

Rose :wave:

[alison34]

Hi Karen

No haven't seen my gp since the the diagnosis, the dermaologist did that, but no I don't have any meds just coping on normal painkillers, and the drematologist told me not to take ibuprofen until I'd seen the rheumy so have no help when I get swollen. Any ideas?

[raggedyann1]

Alison,

Ibuprofen can very RARELY cause asceptic meningitis in lupus patients. So it is always better to see if another nsaid will cover the pain.
Have you tried tylenol, aleve or good old fashioned asprin? They may give you some help. This is just what I would do.

Do you have an appt coming up soon with a rheumy? If not see your GP if OTC pain killers are not helping.

Take care,
Karen