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Hi,
I have been suffering from various symptoms for about a year now, my doc has finally referred me to a specialist in ME/CFS as that is what she thinks I may have. I think lupus may also be a possibility.
I have had the following blood tests which were all normal
full blood count
blood sugar
iron
potassium
rhematoid factor
CRP ESR

I know that a lot of patients with lupus have a normal crp and raised esr. Mine were both normal so does that rule out lupus?

These are the various symptoms I have had at one time or another during the last 6months:
fatigue (constant)
muscle aches
joint pain (no swelling or inflammation)
Irritable bowel
heat rash
itchy legs
foggy brain (can't concentrate)
numbness / pins and needles in hands and feet.
Uncontrollable leg shaking (only twice and only lasted 10mins each time)

I expect I will have to wait quite a while for my appointment with the specialist so just wondered if anyone had any thoughts as to whether this could be lupus or ME/CFS.

Doctor said she thinks it is ME or Fibramalgia (sp?). Lupus has not been mentioned so far.

Many thanks in advance
Kim

 

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forgot to say thyroid and urine tests came back normal too.

 

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Also forgot to add that I get dizzy and lightheaded.
I also bruise very easily on my legs for no apparent reason. Just getting out of bed can leave me bruised!

 

[Maia]

Is the heat rash truly caused by heat (like a hot shower) or is it induced by being in the sun? That could be an important distinction.

I would think that an ANA test should be done before a CFS diagnosis would be given. You will want to ask the specialist about running that test if not your GP. If it's negative, it makes it quite unlikely you have lupus although still not impossible. Your symptoms definitely are common lupus ones, and if I was in your shoes I would want autoimmune disease investigated for thoroughly before accepting a CFS diagnosis. Mostly because the treatments are very different... and you wouldn't want the disease worsening without appropriate treatment.

ESR and CRP can be normal in lupus patients - even in patients with active disease and severe disease. I've not found any hard statistics on how often that happens, but it happens often enough that a rheumatologist should know this is the case at least (if not a GP).

 

[Ocean1]

Hi, Sorry to hear your feeling so ill, I have almost identical symptoms to you and have been ill for the past 9 months, still without a diagnosis! Like you all my bloods are normal and i have now just been diagnosed with Chronic fatigue syndrome Its so frustrating as i really feel that something else is going on not just CFS, my GP just says im doing too much and thats why im not getting better, BUT im not working, had to leave uni, got no stresses really and still im not improving, i do very little during the day except wash, dress, eat, bed. Somedays im ok then others im really bad again, it doesnt seem to correlate with increased activity, this is why i think i dont have CFS!, Sorry to ramble on, just thought id let you know your not alone, and hope you get a diagnosis soon! Please let me know if you find out whats happening with you as it may also help me get a proper diagnosis
Take care and hope you feel better soon x x x x x

 

[LolaLola]

Dear Widget,
I bumped into a Doc. who was willing to admit I had Fibromyalgia but not Lupus. I believe he thought any old diagnosis would shut me up. This can sometimes happen Some people call Fibro a "Waste paper Basket" diagnosis because it can be what Docs. give just to shut you up. Be careful of this,
x Lola

PS I stopped wasting my breath on the above Doc. and went to London,privately at first and was properly diagnosed despite my bloods not being positive until later.

 

[raggedyann1]

Dear Widget,

While you may have Lupus many of your symptoms are also found with Fibromyalgia and some in CFS. In fact Fibromyalgia can be more debilitating than lupus and with extreme CFS patients sometimes they never return to work or school. However the problem these days is that some doctors automatically say Fibro and/or CFS when the initial blood tests come back normal. There are some of us here that have Lupus and Fibromyalgia, in fact 30% of lupus patients also have Fibro.

It sounds like you have already done a fair amount of research on CFS and that you don't seem to fit with that dx. I would definitely push for more bloodwork. What kind of doctor is a CFS/FM specialist in the UK? I know that in the USA Fibro is sometimes managed by a GP and sometimes a Rheumatologist.

Let us know how you get on.

Take care,
Karen

 

[Joandublin]

Hi Widget

Welcome to the Forum

Certainly your symptoms are consistent with fibromyalgia but its important to rule out other autoimmune causes and, as has already been said, the first step is to test for anti nuclear antibodies (ANA).

I have both Lupus and Fibromyalgia and it has taken me several years to be able to (fairly) distinguish between both. When my fibro is flaring I have extreme pain and sensitivity just about most places on my body. I hurt like heck:worried: My skin feels sensitive to the touch (even clothes sometimes hurt) and the worst pain is concentrated in my shoulder area and back. Usually painkillers, sleep and heat pads will sort this out short term.

Having said that, I am never 100% sure what is causing what but I have learned a few things over the years. My Lupus flares usually come along with mouth ulcers, swollen glands, hot and very painful joints, stomach problems and a feeling of fatigue/crapiness that is hard to describe. Its like the energy has just been zapped out of me. Right now I suspect I am having a 'mini' flare. I am trying to pigeon-hole my flares into 'mini', 'midi' and 'maxi' I have four mouth ulcers, very painful knee joints, slight swelling of a gland in the left side of my neck and a pink blush on my chest and neck. My fibro is also acting up as my neck/back/arms are shouting 'Leave me alone!'

I am still on a learning curve with these diseases but I am definitely on a mission to try and work out what is causing what within my body.

Have you had your thyroid function tested? Or your B12 levels? Depletion of these can contribute to many of the symptoms you describe. Ask your GP to test for these as they are easily managed with medication.

Keep on pushing if you feel there is more going on with your body. Dont give up.

Take care for now
Joan:rose:

 

[Widget_t]

Hi everyone, thamk you for your messages and apologies for taking so long to reply.
I got a letter yesterday from the ME specialist that my doctor referred me to. The waiting list for an appointment is at least 12 months!
So I'm going to go back to my doctor next week and tell her that I can't wait 12 months just to be diagnosed, I can't mentally cope with the not knowing. I just want to know what is wrong with me so that I can take appropriate action.
I will keep you updated, thank you for your messages. It's nice to know I'm not alone xx