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Discussion Starter · #1 ·
Hi there

I`m new to this site and as of yet not diagnosed. I have had Fibromyalgia for 12 years but in the last 3 years I have developed symptoms relating to Lupus.
I was finally referred back to a Reumatologist a couple of months ago who pretty much says it looks like Lupus as does my new GP but all the blood tests keep coming back negative. His argument is that although I present a majority of the Lupus symptom (apart from the facial rash) something should be showing up in the blood tests that they take. Could someone tell me if this is correct, as I feel like I`m banging my head against a brick wall....:sad:
 

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Hi Tracey and welcome to the board. :hello::wavesmile:

I would ask specifically which lab tests were run. There are some of us who have never formed ana's [antinuclear antibody], yet have become positive to anti ds dna [anti double stranded dna], sjogren's syndrome, acl [anti cardio lipin antibodies], and more others.

Something many doctors seem to forget, and irritates the daylights out of me, is that a diagnosis of lupus is made on meeting 4 of the 11 symptoms with OR without lab work. They seem to put all their diagnosing eggs in one basket for ana's and don't go further.

There is a book written by a rheumatologist, Daniel Wallace, MD, "The Lupus Book" which explains ways to survive with lupus. I highly recommend you either check it out at your library, or look into it at a local bookstore.

Another thing which helps to identify what is going on is to keep a symptom diary/journal and take photos of any skin happenings. Then, go over this with your rheumatologist. If you are having pain, rate it on a 1-10 scale. If you are running fever, write down how long it lasts and if anything brought it on. No worry if it just "happens" but these are things they need to know. If you "drop" a fever, document that too.

Good luck and welcome to the group. The moderators are superb and there are a lot of us who have dealt with this for many years or decades. Everyone here is here to be supportive and supported. So, welcome.
Sally
 

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Discussion Starter · #3 ·
Hi Sally

Thank you for your reply. The rheumatologist has run all the ana tests and is now writing to the consultant where I was diagnosed with PLE (polymorphic light eruption) and also to another rheumatologist who I saw about 2-3 years ago as it was mentioned back then that this could be Lupus, but again bloods were all negative. I also have ITP ( Idiopathic Thrombocytopenia Puerpra).
The rheumatologist that I am under now is the first one I ever went to see who diagnosed my Fibromyalgia, I have seen at least another four since then and countless GPs but they have all attributed any flare ups or new symptoms to the fibromyalgia. I`m 42 yrs old and work full time but this year I have been off work since March. Two years ago I had a "flare up" that lasted 10 months. Because of the ITP I cannot have any anti inflammatory medication so at the moment they have prescribed co-codamol and pregabalin 300mg Ive also been referred for physiotherapy, but at the moment as you can imagine Im already in quite a bit of pain and SO TIRED!!!
My employers are sending me next week to have an Independent medical to see if I am capable of work and the stress of possibly losing my job is getting me down also.. Oh well I suppose I`d just better wait for the results then.. Its been 2 months already but the funny thing is the rheumatologist does not want to see me again he said he will give the results to my GP and she can take it from there.

Thanks for listening:) x
 

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Aren't some doctors just lovely:(. I had one rhuemy who didn't care. I am trying to get a new one now. I am fornate that I work at a desk. They know I am in pain when I am quiet. I am a jokerster:rotfl:. Keep us informed.

Stacy
 

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Hi Tracey and welcome to the site. It sounds as though you have had a really rough time. Have you been keeping a symptom diary and noting any rashes etc with photos? You obviously have something auto immune going on, they just need to get to the bottom of it! Keep going, you know your own body and know something isn't right. Let us know how you get on.

Take care

Deb
 

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Tracey, your rheumy sounds like an evil twin to the #2 rheumy I fired. That one said that unless he saw a symptom happen, he didn't believe it was taking place! I asked him if I was to call him at 3 AM when I was running a fever or had a rash. He didn't appreciate my lack of humor. Rheumy #1 told me back in 1988 that I had 5 years to live. Kicked his bad rear end off after that!

There are good rheumy's out there......I've been with #4 for 16+ years. You may be able to find one down under the posting for a doctor.

Keep in touch and let us know how we can help. New or old, we all need support from one another.
Sally
 

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Discussion Starter · #7 ·
Hi All

I have kept a diary of my symptoms and photos of the rashes (some of which are in my hospital medical file) The problem is my Gp wont refer me agian to another Rheumy, It took me 18mths of begging to get this referral!!! My GP reckons I have Fibromyalgia and once diagnosed with this no other consultant is going to change their mind unless something shows up in my bloods....:sad:

Yesterday I had a really bad day where just even getting out of bed was an effort, my glands were up and I ached everywhere I just didnt have any energy at all and so didnt get dressed all day... Im due to go back to work next friday.... Doctor wants to sign me off for longer but I cant afford to do that. I also earlier on in the year had to go for an ECG because of chest pains which feel to me like Im having a heart attack... Thank God it was clear but since January I have had this pain on and off about a dozen times and its quite scary.. Will be in touch soon

Thanks for all your support xxx:)
 

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Hi Tracey,

I'm sorry to hear that you're having so much trouble accessing treatment. Some rheumies, when they feel they can't give a firm diagnosis of "lupus" will diagnose a patient with Undifferentiated Connective Tissue Disease (UCTD). It is a way of getting around the firm diagnosis problem and getting the patient on treatment (the same treatment as for lupus). It is also better insurance-wise than having a firm lupus label.

Your GP is wrong that a consultant will not look beyond fibromyalgia. An experienced auto-immune specialist will know that about 30% of lupus patients also have fribromyalgia and he will also be able to look at the whole picture even if your bloods are still negative.

I think the key here is really finding a way to get to a true auto-immune specialist. You can ask for recommendations here in the 'find a lupus' doctor section. Even if you don't have someone on your doorstep it is definitely worth traveling a little further.

Katharine
 
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