To ask whether I should go back to my GP again?

[FlowersandShowersinApril]

I’m in my early 40s and have a three year old .

I was diagnosed with CFS a few years ago.

I know how to manage my illness well but I’ve had a few odd symptoms over the years which on their own , are insignificant but aren’t regularly seen with CFS .

Such as pains in my wrist and elbow joints and pains in feet joints .

Skin rashes which I’ve noticed happens after I’ve been out on a sunny day .

Dry eyes causing excessive watering and stinging when outside .

I had optic neuritis years ago and had a single brain MRI which was found with some small white areas but this was normal and not consistent with MS.

I had a blood test done for ANA antibodies but it was negative so I was diagnosed with CFS .

Two weeks ago I was floored by all of these symptoms at once & I still don’t feel right ....

In fact I’m so miserable with the pain :( .

It started with wrist joint pain (I can’t weight bare on them )

I also have joint pain in my fingers

An increase in fatigue

Waking up very stiff each morning

Red angry blotchy rashes on my chest only after being outside (only skin exposed area and it comes and goes - feels hot to the touch but isn’t itchy ).

Very small (just smaller than the size of a 5p) circular scaly spots on my skin (but there were only 2 of these)

Waves of intense nausea and mild abdominal pains

Feeling very cold and chills

Stiff and aching muscles all over especially in my neck , shoulders and calves

I was also admitted to hospital with a temperature but my bloods came back with no infection so I was sent home and told it was viral

The temperature re occurred and went again the next day

A dull headache that flits from left to right and comes and goes quickly

I spoke to my GP and asked about the prospect of lupus and she just said the blood test has already been done so it can’t be that .

I have had the flu vaccine ; I don’t have any runny nose , congestion or cold symptoms .

I’ve been for so many tests but nothing is proving conclusive and I think my doctor is getting a bit fed up .

I am so miserable with all of this and I have no idea what to do ?

I’m at home alone with the toddler and I barely have the energy to move off the sofa, have a very sore neck and no appetite .

Suggestions ?

Lupus is just one disease in a family of conditions that all have similar symptoms. I would go back to the GP and push harder and ask for bloods to be repeated you maybe positive now.

I have lupus and an ANA test is NOT the definitive as it can throw up false negatives very often. In fact I had three ANA tests before a positive result.
Your symptoms do sound similar to lupus, but with the eyes I'd be inclined to think along the lines of Sjogrens perhaps?! Please ask your go to refer you to a rheumatologist and don't take no for an answer.

Wow I could have written most of this, I had ON five years ago and have never been right since. My MRI came back completely clear but I’ve been having a lot of the symptoms you’ve mentioned ever since (becoming more obvious over the last 12 months)

I had a recent lupus blood test which came back clear - not sure I should just leave it at that.

Sorry I don’t mean to hijack your thread, It’s just that most of the things you’ve typed I can really relate to so it’s got me thinking again.

for the responses.

Can I ask the GP to refer me to a rheumatologist?

I thought once the test came back negative that was that and they would say no .

I also feel a bit stupid asking as my GP is convinced it’s all in my head

I do wonder myself if I’m imagining it but then I have very real proof of the fever as I was admitted with it .

I’ve taken pictures of the rashes and also my white and red hands (this happens when they are cold) .

Is it worth showing these?

YANBU, I would ask for a referral to a rheumatologist if you are concerned.

Sorry, cross post, yes you can ask even if the tests are negative.

I will make an appointment this week .

Could it also be flu?

I thought I’d have some snot / congestion symptoms with that too though?

I think I am on the verge of another fever .

Have you had arthritis ruled out? It won't account for all of the symptoms but certainly covers joint pain, fatigue, skin issues and eye problems. It can also cause inflamed tendons (depending on which type) which can make muscles work harder and become sore.

I have CFS and suffer with significant joint pain. My physio told me that it was fairly common.

My wrists are most affected so on the bad days I use wrist supports I bought from amazon for around £10..they really help!

I had symptoms quite similar to this with parvovirus (slapped cheek).

My kids had it first: DD had the classic facial rash (so we knew exactly what it was), DS had a slight fever and a rash on his upper arms and chest, but not his face. About a week or 10 days later I developed excruciating pain in my neck and shoulder that then spread to my hand, knee and ankle joints. I'm a fit person and at one point I could hardly get up from a sitting position.

I wouldn't have known what it was if DD hadn't had a classic case of slapped cheek symptoms (which neither DS nor I had). Apparently in adults parvovirus is more likely to cause joint and muscle pain than rash.

It took about a month for me to feel properly better and I don't have other health problems. I imagine it could flatten someone with a history of autoimmune disease.

Yes to me it either sounds like a particularly shit virus or rheumatoid in origin. It could well be "just" a virus though. They can be brutal and wipe you out for a while.

Have you had vitamin d tested? Low vit d caused lots of joint pain for me.