Just looking for advice

[Johnjones4]

So this is my first post on this forum and Im not really sure what I'm doing here but I dont really know where to turn for advise, im not sure if I have lupus or whats wrong with me really but I'll start

Im a male, 24 years old currently, was quite fit and healthy a couple of years ago (around 21/22) and enjoyed regular exercise, I started getting pain in my wrists and it slowly spread in to other areas like my knees (both sides), these symptoms were present whether I exercised or not and seen the doctors about it a couple of times to no real solution other then to take ibroprophen and rest the joints.

So eventually on top of the joint pain, (theres no real swelling or inflammation just pain), I got a hacking cough which ive had for about 2 years now, been to edoscopy and aparently its a very hiatus hernia but acid tablets have no effect on the cough. On top of that I have massive fatigue constantly at work and really struggle with my energy levels & getting through the day, I regularly fall asleep at meal time.

starting 6 months ago my eyes have begun to get really sore and dry to were I sturggle to read or watch TV/use screens (I dont need glasses ive had mt eyes tested).

So having taken all this information to the local GP and getting tests done I was finally refered to a rheumatologist which I was actually releaved to finally be getting some help after years.

I visited the rheumatologist a couple of months ago, who carried out a swift investigation feeling a few of my joints and asking questions. He quickly came to the conclusion that there was nothing wrong with me, relating to his field at least.

Futher on from this my eye symptoms have progressed, having seen a eye specialist he tells me they are dry and inflamed.

Ive also started to get what seems to be quite rapid hairloss even though its not common in my family.

The final symptom that encouraged me to write this post was last night I discovered I had strange discolouration of the skin all over the upper back and neck that look like vitiligo another auto-immune issue and im starting to get really conserned with the mounting list of symptoms I have and no diagnosis, the more I go to the doctors the more it seems they just think im a hypercondriac and dismiss me. I really dont know where to turn for advise now or which specialist I can turn to next.

[loopy4me]

No blood tests taken by rheumatologist? That’s what I would push for

[Johnjones4 in reply to loopy4me]

The doctors have taken them a couple times and said theres signs that my anti bodies are attacking eachother but they aren't massive, and my inflimation markers arent high. I think thats why it got no futher

[loopy4me in reply to Johnjones4]

So sorry John. I hate to hear of people suffering with things that don’t make sense. Not sure where you live, but I had a dr that sorta blew me off. I decided to get an appt with a reputable rheumy. It took 7 months of waiting but was well worth it. I got a good accurate diagnosis. The new dr seemed like he was solving a puzzle but putting symptoms and bloodwork analysis together . Anyway keep positive and find another dr

[Hidden]

Hi John. This might not be Lupus but could be a mix of autoimmune conditions and these don’t always show up in blood tests. For example I’ve had quite dry eyes and mouth since I was a kid, had alopecia areate as a kid - both assumed to be anxiety related. Then as I went into my 20s and 30s I was always fatigued, had severe eczema, allergic rhinitis, anaphylaxis and other pregnancy and post gestational problems with each of my 3 sons. My hair would fall out, I’d get inexplicable rashes, I had IBS, Bell’s Palsy, gallstones - then diagnosed with hypothyroidism. For a while my multiple symptoms remitted - then came RA, now rediagnosed as primary Sjögren’s with overlapping connective tissue diseases.

In between the diagnoses have come diagnoses redacted, misdiagnosis, good and bad doctors and it seems sometimes that I’ve been fighting to be believed about my autoimmunity for much of my life. The only advice I can give is to look up Sjögren’s and try and find a rheumatologist with an open mind and a special interest in Sjögren’s given your dry eyes, severe fatigue and other symptoms.

I was diagnosed by lip biopsy 3 and a half years ago and I have no regrets whatsoever about having this mildly invasive procedure. Some feel that having biopsies done is a step too far but each to their own. I think at the very least you should get a referral to dermatology and perhaps have a small biopsy of the patch on your back.

You will know when the diagnosis feels right to you so keep strong in your quest for answers. Best of luck. 😎😊

[Johnjones4 in reply to Hidden]

Thank you very much for taking the time to reply and looking at sjogren's it does seem to match up quite alot, I think the rheumatologist seemed to dismiss it quite quickly when I said I never really experienced a dry mouth. Im going back to the doctors on friday and will mention it again to them as well as the patch on my back, thanks again!

[Hidden in reply to Johnjones4]

You are most welcome. To be honest with you I’m not sure that my mouth has been that dry ever - certainly the tests my second rheumatologist ran on my eyes and mouth didn’t indicate that I had much beyond mild sicca. It’s always been this way for me though and primary Sjögren’s wasn’t mentioned as a possibility for me until I relocated a second time and my ANA was suddenly clear positive with an unusual pattern, high inflammation markers and immunoglobulins and small fibre neuropathy and GI problems with Raynauds. The third rheum looked at this picture, noted dry eyes on my notes and requested a lip biopsy - which was 100% positive.

Not many rheumatologists have much of a clue about Sjögren’s as a systemic autoimmune disease in my experience.

[Johnjones4 in reply to Hidden]

Have you found any relief for your eyes? Struggling with just general reading and stuff these days

[Hidden in reply to Johnjones4]

I have had punctal plugs for a few years now which really helped. I use hyloforte drops and HydraMed lanolin free ointment at night. I use a heated eye mask for 10 minutes most evenings in the bath or during day while resting and I massage my lids after. These are all methods recommended by my old optician to combat the 3 types of dry eye disease of Sjögren’s.

Has the severity of your eye dryness confirmed by optician yet? It’s just that some people feel dry eyes more than others but this doesn’t necessarily match with severity of the sicca. Some will have corneal damage with no apparent sensation of dryness while others feel it horribly but really it’s not nearly as bad as they feel it. If you are in the latter group then it may at least help you to know?

[Hidden]

Sounds like either Sjogrëns (mind you, I’m no expert), and possibly as Twitchy suggests, a couple of different AI’s/connective tissue problems, which might make it overlap? Or Mixed Connective Tissue.

But your wrists should have had an ultrasound done. Often that’s one of the first two points they look for inflammation with Lupus.

All my best John. I hope it’s all not so, but just a lot of similar, but temporary issues. You are way too young to have to worry about this.

But, if it does end up a connective tissue disease, know that all is not lost, you can find a great quality of life, it just might take some experimenting with diet, exercise and possible meds. Please be patient with yourself above all.

🙏

[CecilyParsley]

I just want to say John that I am so very sorry that you are being dismissed in this way and made to feel like a hypochondriac. Honestly there are very few of us here that have not been made to feel the same way. You are so young. Firstly the doctors just have not found what is wrong and it appears that they have not tried particularly hard either. Make a list of your symptoms, take photographic evidence of rashes, hair loss etc then request that your GP refer you to a different Rheumatologist for a second opinion. Good luck

[Hidden in reply to CecilyParsley]

Yes and I’d add to this to go to an optician who can test you properly for dry eyes and give your GP and you both the confirmation of this for your records.

[Dancingmum]

Sorry to hear about your loss of health. I would suggest getting a second opinion from a centre of excellence hospital such as Queen Elizabeth Birmingham rheumatology dept. I have found hospitals vary considerably. You can choose your hospital.

[Treetop33]

Could be very early signs of autoimmunity. I got the roving joint pains, hair loss, raised lymph nodes, rashes etc. about four years before I was diagnosed. I didn't get any luck from the docs, but had I known what it was evolving into, I would have made some concerted lifestyle adjustments to head it off (mainly, and what I've done now, de-stressing, diet, exercise).

[catblue1865]

Hi, I have some of the same symptoms as you with no diagnoses of lupus, when my body pain came back it started in knees, intermetently have a bad cough particularly at night, dry eye syndrome bad at moment with sore and itchy eyes, eye drops from g. P are relief for few minutes only. When I first saw my g. P he said he wanted to treat all my symptoms separately (more and more as time goes on) I too dont have swelling in joints and no conclusive blood tests so no proof, I know what it feels like not to be believed, best of luck

[Johnjones4 in reply to catblue1865]

Ive been given some steroid eye drops called maxidex to take for a couple of months but im really struggling with my vision at the minute more than anything. Your symptoms do sound very similar to mine though