[bornfreebev]

please i dont know where to go ? i was diagnosed with benign intercranial hypertension around 2000, 2007 with discoid lupus but by this point myself and gp were thinking sle, this year i was diagnosed with fybromyalgia, i did have a negative ana test but recently has now changed to positive, i have darkening skin patches on my face, i have alot of symptons of lupus including rashes, i just dont know which support group can help and what it is thats wrong is it bih, is it lupus, is it fybromyalgia, all i know is i hurt im tired, and could do with knowing who can help.

 

[dudley]

Hi,

First thing is to get yourself to a rhummy that knows about lupus and believes in fibro.

As for support groupus there are alot of people on here that have both (myself included) or just one or another.

The DX of lupus can take awhile an for good reason. There is no specific test that says you have lupus. Also only test for fibro is what they call the tender point test. Doc will examine you and touch varies parts of your body looking for pain. Not rocket science.

These disease or conditions are usually made by alot of blood work, duration of pain and by ruling out so many other disease. Most doc will start meds if they feel conditions are leaning to one or another. Again what works on some do not work on another. For lupus they usually start with steriods and work in plaq.
There is alot of info on this sit and the web....I would start reading.

Just don't DX yourself.
I found chat to be very useful.

Elaine

 

[KarolH]

I am new to Lupus with no good advice for you but I think Elaine is right in that you need to get yourself to a good Rheumatologist.

Also, you will find support here.

These folks are great people and so supportive.

Anything you want to know just ask and sure enough someone comes along to help out.

 

[LolaLola]

Hello Bev,
Is that your dog? Wow, he looks as if he could take you for a walk.

I am sorry you are in so much pain. Docs. often start with a diagnosis of fibro. Some then use it as an excuse to do nothing for you. Sorry to sound negative but this is my experience and I know others the same.
If you ever do get tried on steroids it is useful to remember that they will benefit lupus but not fibro. which may help in diagnosis.
Stick with us, you need support.
Do you have a family?
X Lola

 

[Clare.T]

Welcome to the forum Bev

It sounds as if you need to see a good rheumatologist ! If it was a Rheumy who diagnosed the fibro he should have suggested treatment and therapy for it. If he decided you didn't have lupus he should have given some indication of why in his report to your GP. It is certainly possible to have both lupus and fibro and quite a number of people here have both.
I wonder if the discoid was ever treated and if it is still active. Even if it has gone it is possible for the lupus to emerge in some other form later. People with discoid often have a few systemic symptoms even when there is no blood work but you say the ANA is now positive. Even if it is low positive it could be significant, taken along with the discoid and other symptoms. Do you know the titre?
I wonder too if all other general blood work is OK with no signs of anemia or low platelets or white blood cell count for example. Ask for anemia and thyroid tests if they haven't been done
The LupusUK Yorkshire support group has a website at
http://www.yorkshirelupus.org.uk/

It seems an active group and you will get friendly helpful local contacts. Leeds has a major lupus centre & there's a Lupus Clinic at Chapel Allerton. I suppose this is in your PCT. To the North East there's Newcastle and to the NorthWest there's Manchester.

Please let us know how you get on and good luck

Clare

 

[bornfreebev]

hi, thanks for the advice, i have been definately diagnosed with lupus, discoid lupus, i have had anemia and also a low vitamin b12, i was treated with folic acid and iron tablets, the rheumy said my bloods recently were ok though, he said i do not have sle, i definately have fibromyalgia, and he has discharged me with a latter for my gp on how to treat me. I am in the middle of a flair at the moment as my skin has rashed up again along with other symptons, so all in all im still a little confused as to which illness is causing which symptons and therfore dont know which doctors i should be seeing.