Return of the flair!

[mumsyme]

Hi everyone! I haven't posted on here for about 6 months I think because I had two full blood counts (ANA etc) which came back negative and one GP stating my symptoms were mental health. I've had mini flair ups throughout the year, but in the last fortnight I have been in pain in every single joint in my body, feeling exhausted, hot red spreading from my chest up to my cheeks and nose while my arms and legs are mottled pattern and cold. I also have the added symptom of swollen right hand, around my knuckles and swollen right ankle, breathlessness and chest pain a couple of times with pain running from elbow to my hand. I've got GP appointment again today but don't hold much hope as they refuse to look at several of my symptoms and ask which one is bothering me the most. I'm convinced this is lupus as it doesn't quite fit with other symptoms such as rheumatoid arthritis or fibromyalgia (fibromyalgia doesn't cause joint pain or swelling around joints). This is a picture of the swelling in my hand.

[Hidden]

Hi there. Sorry you are getting the brush off in this way. It’s totally unacceptable for any GP to suggest that your many symptoms are due to mental health issues without referral to a specialist for confirmation. This is just bad doctoring and does much harm!

All I can tell you is that I presented to 2 GPs with very similar symptoms in early 2011. The first was a locum who told me I had carpal tunnel in my wrists and cartilage damage in my knees. I didn’t think to mention other symptoms such as a horrible bitter taste and burning soles.

A month or so later I presented to my own GP with worsening of both and he took bloods for RA - these were Rheumatoid Factor, ESR, CRP and a full blood count. His initial thought was that I had post viral arthritis.

At my request he also did a fasting blood test. He said he would let me know but I heard nothing so assumed all was normal and continued to hobble about. He phoned me one evening 2 or three weeks later to let me know that my inflammation markers were significantly elevated and my Rheumatoid Factor was raised (only weakly). As it turned out my ANA was probably high too but he didn’t test this.

So he referred me straight away and took the unorthodox step of giving me a steroid jab and putting me on Sulfasalazine as he said if probably have a long wait to be seen - and he was right.

I was diagnosed with seronegative RA 8 months later and this was changed to seronegative Sjögren’s 2 years ago by lip biopsy in a new hospital.

My main point is that, although it much less likely that Lupus would present with negative ANA -30% of people with RA and Sjögren’s are seronegative ie negative antibodies - sometimes fully negative bloods. So no GP can make the decision as to whether or not you have a chronic pain syndrome or a rheumatic disease because they aren’t qualified to!

Please stand firm and use the seronegative argument if you have to! Best of luck.🤞🏽😊

[mumsyme in reply to Hidden]

Hi Twitchytoes,

My GP said it's definitely not lupus as my flares would be more consistent throughout the year. He believes it's a reactive rheumatic, arthritic problem caused by a low level bug. He says because I already have narcolepsy type 1, my autoimmune system goes in to overdrive at this particular time of year for 4-6 weeks. The only thing I can do is take ibuprofen and do very gentle exercise.

[Hidden in reply to mumsyme]

So does this sit right with you or not?

[mumsyme in reply to Hidden]

I don't know. It doesn't explain the rash on my face or chest, nor the sores inside my nostrils (which always are the first symptom).

[Hidden in reply to mumsyme]

Yes I get sores up my nostrils a lot - one of my most annoying symptoms just now actually. Have you seen a dermatologist at all? Ps just read answer below re seeing derm soon.

[Naz2005 in reply to mumsyme]

Hi i had a sore nose like dried blood realy bad was finding it difficult to breath & painfull docs & consultants said nothing to worry about & gave me nothing for it for a whole 2-3 weeks i just used vaseline & it helped alot x

[nanleighh]

Hi mumsyme, It’s good to keep documentation of all your symptoms. I’m sorry your doctors do not take your symptoms seriously. I think a lot of us have been there. I began to think I was crazy myself. It’s not like I wanted to be sick but when you finally get a diagnosis it does finally make you feel that you are not crazy or lazy and unmotivated. I can see the swelling in your hand. Others cannot see the pain or fatigue of autoimmune diseases. The one thing I will say is that swelling in lupus is usually bilateral, not to say that you can’t just have swelling on one side with lupus. And most physicians refuse to call anything autoimmune unless you have a positive ANA. In 2007 I had pain and swelling in my ankles and feet so bad for over a year that I could hardly walk and I could only wear crocs on my feet. I had a complete work up at that time and the only thing that came back was low vitamin D levels. I had periods of fever with no cause, severe fatigue, then in 2004 I developed severe anxiety out of the blue and had to go on lexapro for 3 years. I also had a lot of GI problems reflux being really bad. In 2014 I developed joint pain again this time with a rash in my face and neck. My ANA was now positive and I had anti RNA antibody and was finally diagnosed with lupus. Honestly I was shocked because I had been told for so long that nothing was wrong. I think we all have that inner voice that tells us that there is something wrong but the medical people keep telling us there is nothing wrong and kind of look at you like you are a hypochondriac or malingerer. I was a nurse too for 40 years before I retired 2 years ago and still couldn’t put 2 and 2 together because I had been told so many times nothing was wrong. Keep a diary of all your symptoms along with pictures. Hopefully you can find a physician who will listen to you. I feel for you because I’ve been there. Take care and I wish you the best. XO, Nan

[mumsyme]

I do have an appointment with a dermatologist in December which my consultant for narcolepsy stated I should be referred, in a letter to my local GP surgery. So, I am keeping all evidence to present to the dermatologist.