LUPUS ADVICE APPRECIATED-NOT DIAGNOSED.

[AvocadoAddict]

Where do I start?!, apologies. It’s a long one.

About 8 years ago I started getting problems around the same time:

Photo sensitivity with lesions on my chest & neck as well as rashes on my feet,arms & ears,

Muscle and joint pain feeling sluggish like I’d been to a gym & overdone it,

Arthritic problems and calcium burrs in my shoulders,

Freezing cold hands and feet nearly all the time …..

In the years following that I have also developed dry nostrils that don’t feel like I’m getting enough air, a reoccurring rash across my cheeks and nose, feeling spaced out, arthritic foot deformities, small swelling bumps on the joints of the sides of my fingers that come and go, constant never-ending fatigue, poor sleep waking multiple times each night, infrequent sharp pains in the side the side of my head, feeling a freezing cold numbing inside my chest that spreads into my throat and neck, up inside my ears and nose and around and behind my eyes, inc inside the centre of my back and across my shoulder blades, and down to my elbows.

After the coldness and sometimes fluctuating at the same time comes a feeling of internal heat and discomfort, it usually wanes out with aching discomfort in my diaphragm and my internal organs and ends with upset bowels.

The internal coldness and heat feels like inflammation that regularly attacks the front inside of my chest leaving red external patches where it occurred inside and paracetamol never worked but ibuprofen seemed to ease it back which is why it felt like inflammation internally.

The last 12 to 18 months have got much worse and all these flareups are happening more frequently including dry eyes diagnosed by my optician, waking up choking, my tongue dry at the back and irritated inc my epiglottis, My hyoid bone is tender on the inside of my mouth and sometimes clicks or feels like it jars when I swallow and it causes pain in my ear on the same side of the rear of my tongue and in my neck on that side. During these frequent flareups and also previously I get what feels like an internal trembling bubbling feeling down through the centre of my chest, the back of my neck, down the centre of my back and across to back off my my shoulders like I can’t control my muscles or my nerves inside,

I didn’t really know anything about lupus and it wasn’t something I came up with myself, it was mentioned by a clinician about 6 or so years ago after trying to describe some of the symptoms and having a brain scan and gastroscopy to see if that was a cause for some of the symptoms Id mentioned. The clinician said I might want to have a chat with my GP about the possibility of Lupus as I was displaying some of the symptoms and describing others I was experiencing.

I never took up the clinicians advice because although my GP practice is pretty good, I’d had a really negative experience at my previous practice before moving house.

I plucked up the courage to mention multiple symptoms when I was at an appointment and the snappy GP told me not to stockpile and store up multiple problems and bring them all in one visit, and I went away humiliated and feeling like a hypochondriac.

I have seen my current GP sporadically over the years for individually most of the things ive listed above so the most of them should be on record mentioned, including acknowledgement of the Photo sensitivity/sun allergy that I have to take Fexofenadine tablets for, and steroid cream when the lesions are bad, and the photo sensitivity flareups aren’t always in warm weather but regular sunlight too,, and I’ve got symmetrical joint problems in both wrists and hands which are under treatment and investigation by a specialist who gave me a steroid injection and bullied me into agreeing that if she couldn’t see anything on x-ray or MRI that I trusted her if she said there was nothing there, and that she was correct and that if she couldn’t see anything on x-ray or MRI that I trusted her if she said there was nothing there and that she was correct, and she directed me to Google to search up cheap wrist supports….

With the flare ups coming much more regularly and sometimes taking weeks to go, I had a particularly bad one before Christmas with my throat, tongue and neck which prompted my GP to make an urgent head and neck cancer referral to ENT (I wasn’t concerned it was that) and today I had an appointment which eliminates the GPs cancer concerns which I knew it would.

My appointment was at the end of the day running 50 minutes late and I was the last but one to be seen by a tired rushed impatient man that used a tiny camera down my nose eliminating any cancer concerns the GP had which I didn’t have.He confirmed my nostrils and throat look healthy,, he didn’t bother looking in my ears despite it being an ENT appointment, and he wasn’t listening after he felt and checked my neck when I tried telling him about the more regular flareup problems with my dry tender tongue ,nostrils, ear pain, wet mucky feeling in the far back of my throat making me clear it regularly, freezing cold internal feelings of inflammation , inside my chest and throat into my ears and around my face and nose, or the rash on my face and chest.

His answer was a disbelieving “well it all looks okay at the moment and that bone in your throat is your hyoid!”, to which I explained “I know that and you won’t see what I’ve been describing to you because it happens during each flareup and I’ve just passed the tail end of the most recent one so it’s gone”.

He proceeded to suggest I’m clearing my throat too often but said he hadn’t heard me clear my throat while I was with him, but when I did clear my throat about a minute later he said “ahh there it is” insinuating that I’d only done so because he mentioned it, then he said my tongue is dry because I clear my throat too much and he gave me an educational speech about my Hyoid bone but not addressing why it was tender nor why it feels like it is jarring and clicking sometimes when I swallow ,just telling me how throats are supposed to be moist and he went on to suggest that I drink more and suck throat sweets to keep everything moist which he didn’t listen when I said I already do, then he essentially ended the conversation dismissing me.

At my wits end , how on earth can I go to my GP with all of this on top of todays clinician without looking like a self diagnosing hypochondriac?!.

I’ve paid for a private ANA blood test and got no idea how I’m gonna to approach my GP with it let alone all the above in l.

[Chris21]

Hi Avocado Addict, many of us will fully understand the frustration youre going through.

surely over the years, youve been told youre stressed, its all in your head, youre googling too much. I too went to ent for cancer camera down nose but also face xray which showed nothing. theyre diagnosis was chronic non allergic rhinitis, today its called sinus problems due to lupus sle and sjogrens. In the early years of having similar to all the problems you’re having, i went to rheumatology privately and was tested for auto immune disease and it all came back negative with no answer, even had mri scans, nothing. many years later after frequent visits to GP with no answers. I ended up with pancreatitis caused by gallstones, at least that wasnt ‘all in my head’. a few years later, another bout of pancreatitis, oh how they searched for more gallstones and came up with nothing! I refused to go home until I had an answer. one extra week, I had a group of doctors and team. came and said, im very sorry to tell you, you have lupus. I had no idea what is was, never heard of it and then further investigations came and I had all sorts of immune disease thrown at me. Today Im actually under the doctor who I saw privately but under NHS. I hope one day they find an easier way to diagnosis these conditions without waiting many many years.

Have you seen rheumatology? I would think that might be a good start and ask is there a possibility yo may have sjogrens, thats a relatively easy one to test and a lot of your symptoms, mouth/eyes are possibilites which can also cause all the same/similar problems with lupus. At least that would be a starting point and then history taken, that hopefully will lead on to more investigations.

Its not an easy journey but you will get there, and we will be here when you want to rant/moan/ask suggestions. 😊💪🏼

[Alexia01]

hi there,

Im sorry to hear of all the problems you’ve had and all the frustrating experiences you’ve encountered with doctors. There is clearly something going on and I fully understand how difficult it can be to get to the bottom of it. Please don’t be defeated you will get there in the end.

In my experience I would suggest going to your GP (try and book one of the younger ones if possible, as I always find they are way more helpful than the older ones!) and asking for and ANA test and a referral to Rhumatology based on the following lupus / sjogrens symptoms. I have both and can relate to many of them.

Then I would specifically only just list the symptoms that are relevant to these conditions. It’s not that your other symptoms aren’t important, but for the purpose of getting a rhumatology refferal it’s best to stick with just the relevant ones. I have found in the past that our conditions present many weird and wonderful symptoms and when I was listing them all to my GP I could see them getting more confused! I feel you have to try and be as concise as possible I.e

I think I may have this condition/s, these are the symptoms that relate, please run this test and send me for this refferal.

Most importantly if they say no, you need to ask them to add to you notes that they have refused and the reasons for not doing it.

From what you’ve said I would suggest the following symptoms list for each

Lupus

• Photosensitivity with lesions and rashes including “butterfly rash” across cheeks and nose.

• Muscle and joint pain; symmetrical joint problems (wrists, hands).

• Arthritis-like symptoms, including foot deformities and calcium burrs.

• Constant fatigue and poor sleep.

• Cold hands and feet (possible Raynauds)

• Sharp head pains and cognitive issues

• Internal heat and coldness, with visible inflammation patches.

Sjogrens

• Dry nostrils, eyes, tongue, and throat.

• Waking up choking, irritated epiglottis, tender hyoid bone.

• Pain in ears, rear of tongue, and neck.

• Wet feeling in throat (compensatory mucus).

Overlapping Symptoms:

• Swelling bumps on finger joints.

• Recurrent chest and throat inflammation.

• Upset bowels.

If all that fails, I would also suggest seeing a private lupus/sjogrens specialist locally who also does NHS work. As previously mentioned, it can be a good way to get under a good Rhumatologist (not that we should have to)

Hopefully some of that helps, take care and let us know how you get on

Xx