Time and time again I am reading the same story but from different people! It breaks my heart to read some of your posts.
Now I’m sitting here thinking and wondering if men are experiencing the same?
I would really like to hear from a few males and their journey to a diagnosis? Does Lupus UK have any statistics from previous questionnaires that have been completed, without disclosing sensitive information?
My father has rheumatoid arthritis. I look at him and his a picture of health to be honest apart from his 2 new hips. Looking back since he was diagnosed, his lived a normal life and when his been in terrible pain he has been able to call up for an emergency steroid injection. I’ve never really seen him struggle.
Of course I know this isn’t the same for every male out there, and I would really like to hear from a few of you.
The way I’m starting to look at things now, is “did my illness make me this unwell” or “did my battle to be heard make me this unwell” ???
I’m very deep thinking about the whole thing and just wondering how on Earth am I’m this bad compared to my dad! I’m sure the female hormones play a big part in some symptoms but maybe the battle just depletes us.
Ps I can feel I’m about to get unwell so I do tend to get rather fed up and emotional and my brain doesn’t shut up!!!! Maybe I should go for a mental health assessment 😅
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Lisalou19
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Interesting you say your brain doesn’t switch off! Is it because we are worried all the time, or my belief is that some sort of inflammation occurs in the brain.
Well, I got a diagnosis quickly - but maybe that was because of my symptoms on first presentation - mainly severe shortness of breath. Even then, I was misdiagnosed as having heart failure. But that meant I had a cardiac MRI that showed Interstitial Lung Disease - a fairly clear indication that a systemic autoimmune was present.
Since then, though, I have had an ongoing struggle to get my specialists to take my most debilitating symptoms seriously, and had the same repeated suggestion that they are psychosomatic that many people here report. I'd definitely say I have been emotionally - and physically - hurt by the approach of some of my medics.
But that's just me. I don't know how far it reflects other men's experiences. x
I have my lung scan on 14th Feb. I do get breathless but I’ve always put that down to medication and my weight gain 😥
As for the constant battles to find out what causes other symptoms, that leaves you in a very isolated place. Only you know what you are feeling and I know for you these feelings are real. Just know ones seems to want to find the route cause, so we are all bloody mental 🤪. Xx
And we all seem to be mental. This is why it would be interesting to hear from male experiences , see if they get the same brush off x
I think the recent LupusUK study of patient/clinician trust and diagnostic journeys might answer your question?! I'm looking forward to the results anyway x
Well, stress is a HUGE factor in autoimmunity, even at molecular level, so maybe we feed the disease by being permanently in flight-or-fight mode - when even the prospect of a doctor's appt raised our blood pressure - and it's documented that men are better designed to deal with stress hormones..
SLE is definitely hormone-related (oestrogen) as 90% affected are female
The battle to be heard is exhausting and stressful, and counselling should be offered as a matter of course, not just to deal with living with horrible illness, but reducing medical PTSD!
If you have access to psychological input, go for it! It might result in prompts for the specialists to investigate all the random and obscure things that go on in our bodies! xxx
I just completed a self referral for counselling. I think now I have some answers it’s time I dealt with the problems this journey has caused me. I’ve got such a build up of hate and anger towards 1 doctor! I know I should let it go but for him to allow me to fall apart in front of my 3 children, that’s a lot to forgive in my eyes.
God I feel like I moan so much 😂
I don’t use social media, this site to me is my Facebook xx
GREAT! Your counsellor will say your feelings of hate and anger are justified and will teach you how to turn this into positive energy, and how to explain it all to your three!
Need a moan? This is the place to come! So glad you're posting! xxx
I've never thought of it like that but medical PTSD is probably an accurate description, will try that at next psycho appointment and see what she says.
How often do you go to these appointments? I put myself through counselling for other reasons. At the time she kept seeing the illness as and when it flared and this was at the same time I was getting brushed off. She’d often try and get me to talk about it, but I never did at the time because there were NO answers or understanding of what was going on.
I've had 3 of 10 so far. she seems to think all I need is meditation for the pain, depends on the pain I suppose. I'm also finding it hard to concentrate because of my mind wandering while she is reading out this visualisation thing. I might feel less pain while sitting and meditating but it doesn't help when I have to go out as a lot of my pain is in my feet. I will persevere though just in case.
Mediation, yes I struggle as I still keep thinking of everything else. I also get a lot of pain in my feet, I brought a foot massager from Argos and bathe them in warm water and menthol. You can use vics for this . X
Dear Eekt, you say SLE is definitely hormone-related but I learnt recently that female blood has more antibodies in it than male blood. In fact the NHS looks out for both types. So it seems logical to me that an autoimmune condition will disproportionately impact those with more antibodies in their blood. I so appreciate the honesty and courage of your posts. With my very best regards Lily
Thanks Lily, YES! I was reading study on how oestrogen protects in MS yet increases flares in SLE* and it says oestrogen increases dsDNA production (plus IgG and IgM). That would tie in with onset usually during child-bearing years, and the recommendation to avoid oestrogen contraceptive (happily my pre-diagnosis anti-flooding coil is progesterone, phew!)
Thanks for your kind words, I am SO glad I found this forum after so many years in the wilderness! xxx
Hi was in and out of the docs for yrs with joint pain I felt terrible going only to be told don’t know why after yrs and a new doc apparently my joints were wearing out in my hands so I just stopped going the fatigue was getting debilitating by then ,I fractured my ankle at work and when I was at physio they took a full history and I could see the cogs turning he told me to go sack to the dr and tell him about the fatigue but I didn’t didn’t want to feel like a hypochondriac a few yrs later my wife was at dermatology and I went with her she was given the all clear and the consultant said anything else I can help you with yes she said can you look at my husbands 👂 after a quick look he said don’t want to worry you but go straight to your go and get a referral to me my secretary will look for it 2weeks later I was there a full history was taken then he said I’m not going to take the top of your ears off just yet at first glance I think he thought it was cancer but with the history and a few extra questions like do you feel ill in the sun do I get night sweats etc he sent me to Rumi the rest is history so no I’ve never been told I was wasting time but I was beginning to believe I was a hypochondriac lucky my wife asked him to look at me
I’m sorry you suffered for so long, but lovely to hear a good ending (sort of).
Do you feel you just suffered in silence for longer than you should of? Perhaps being male this had an impact on you trying to voice your concerns ? Did you often find doctors giving you a blank look or even mention a referral to mental health?
Thank you so much for commenting and sorry for the questions, I just want to try and understand if there are any major differences between how males and females are treated.
I don’t know if you’re a member of the NRAS HU but you might want to join and see more broadly how men fare - especially to get a better insight into how it is for your dad?
My experience, from using various HU communities for my various related or unrelated conditions - is that the men I come across suffer less of a wait generally - maybe because they are so few in number and some don’t go until things are pretty bad. But if and when things aren’t straight forward and once they start having to badger doctor regularly - the assumptions their doctors make are pretty similar.
My late dad had lots of health problems and was a terrible worrypot. So he just assumed he had everything possible wrong, trusted his doctors implicitly, and never worried that they might privately have him down as a hypochondriac. He was certainly no stoic about his gout, heart problems, diabetes etc. He loved and revered his doctors!
I also have an 88 year old friend who married a much younger friend. He has only recently become disabled and is very deferential towards his doctors too although was upset in a jokey way when his GP suggested he had health anxiety last year. But his wife was livid about this - so very different responses!
I also observe that the men with Sjögren’s, apparently 1 in 12, are much angrier rather than depressed. They have never been diagnosed properly because they are men and Sjögren’s is hard to diagnose even in women. So far these men with Sjögren’s have comprised of a long retired doctor - who is very unquestioning of the medical profession at large of course. And 4 men on a closed Sjögren’s FB group - who are very clever and very angry and traumatised about the medical profession at large - particularly rheumatologists.
And then of course then there’s Mike and Ian here who both seem pretty sensitive and similar to us in their experiences of autoimmunity.
Have you spoken to your dad about his RA? It occurs to me that, as a parent and grandparent, he might put on a brave face about his pain? But also RA is mostly much easier to diagnose than our diseases because it is much more common, often much more treatable, and presents as “frank synovitis” as my rheumy no.1 described it with me. Of course in my case he got it wrong but then Sjögren’s can mimic anything as I know only too well.
The point is that real RA erodes joints in a very specific and unique way and is therefore unmissable. So there are less of us misunderstood souls floating about undiagnosed or misdiagnosed on NRAS HU. Which I guess might explain your father’s experience compared to your own?
There seem to be 3 or 4 regular contributing men on the FND Hope HU. They are mostly quite accepting of the diagnosis of a conversion disorder though. Maybe they see it differently or take it less personally than I do? I do think men get fobbed off too but it is just that less of them are affected by autoimmunity so are perhaps they more noticeable and believable to doctors - no menopause to cloud things? Or perhaps they are often like my own late father and don’t see it in the same way - not as aware of the discrimination we so often suffer? I also think Eekt’s point about hormones is the scientific evidence that supports this.
I had a great counsellor up north and I miss her a lot since relocating. She was completely on board with the medical PTSD thing and we shared the same GPs so could analyse what they told me retrospectively. I think she took the heat out of a lot of my rage at the time.
Since I relocated it’s been harder to process the anger I have towards some doctors - although my old counsellor still emails me and has offered to speak on the phone or when I’m back up there for work. Her brother has ME and has long given up on the medical profession but has dedicated his life to understanding ME and the related science behind it better. She thinks he’s rather obsessed whereas I think he sounds quite normal!
I would definitely go for counselling if you can. I think it really did help me. Xx
There was no mention of a mental refural but I the end I just stopped going as I was sure they all felt I was mardy or an hypochondriac now I was lucky with the dermatologist,now my meds are sorted 🤞hydroxy methotrexate injections pills were poison to me and I now take viagra for rainods (much to my wife’s amusement) and tramadol I feel the best I’ve felt in a long time I now get the odd bad week here and there but still suffer with fatigue my doctor (gp) dose not have any input with this medication it’s all dealt with by the wonderful nurses and consultant at the rume department I owe them a lot
Viagra 😂 I’m happy they have an alternative use for you.
Where you say you gave up going to the doctors, I believe us women carry on going which maybe why we get the mental tag thrown at us.
I generally feel fatigued most of the time which is so draining in itself , but I’ve learnt through talking that we generally don’t have good days, we just have better days.
My dad speaks of his rheumatologist highly , I think I’m finally about to form this opinion of mine after years of blank looks.
Thank you once again for commenting
X
Hang on do you mean they diagnosed RA without X-ray or ultrasound of his hands? Was it a long time ago perhaps? If he’s as well as you say then maybe this is why? Hips aren’t usually affected by RA unless it’s very aggressive - usually hip arthritis is either primary or secondary OA. I have consistently raised to high inflammation but even I struggle to be taken seriously so I know how you feel! Xx
This was roughly 20 years ago he was diagnosed. No scans or anything just a visual. He recently had a double hip replacement but after my much reading I believe the steroids caused his hips to wear away, as he was taking only steroids back then. He has all weird and wonderful medications now x
He does report that he was in constant pain and swelling of he’s fingers and knees . He has little flares ups now and again but he just seems to manage . I can never see in him the way I feel at times. Although he did say to me last year he can understand how desperate I am for help. He must of been in a bad place once, but he never showed it
I’m tired of my kids seeing me so poorly at times x
I’m amazed a rheumatolgist hasn’t retested and confirmed or undiagnosed RA if he has to take disease modifying medications and/ or steroids?
I did 3 days of training as an ambassador for NRAS which included understanding the diagnostic criteria and self monitoring RA.
Usually the main tell take sign a person has long-standing RA is drifting and deformity in knuckles and fingers.
Anyway back to you - you’re a rare bird and I hope you get some support for coming to terms with all that your doctors have put you through. I find writing letters to mine very helpful and cathartic - whether I send them or not. Usually not. X
I was diagnosed about 4 years ago. Thinking back, I had always suffered from fatigue but thought this was normal. Also, I had joint pain now again but I just put this down to wear and tear. For as long as I can remember I have always had purple fingers and toes in cold weather but thought this was just a circulation problem.....it was not until my Dad died that I started to piece things together. He developed pneumonia and was in hospital for some while and eventually had respiratory failure. For a long time he had suffered from rheumatoid arthritis like your Dad and was prescribed methotrexate. During his stay, he developed discoid lupus and this was the first time I had heard of lupus really.
Not long before he died I visited a rheumatologist for some joint pain - she took my bloods and gave me a steroid injection. The same night she called my GP to say my ALT reading was over 600 (normal is under 40) and I was advised to go to the hospital. Thankfully, the high reading came down - I was referred to a gastroenterologist and a liver biopsy some time later revealed auto-immune hepatitis.
Eventually, it was all pieced together and I was given a diagnosis of lupus and I now see 3 different consultants (rheumy, renal, and gastro). I'm on hydroxychloroquine and pred. I had a flare recently which meant some time off work (they've been really good) but fingers crossed, things are ok at the moment.
As well as my medication I'm also looking at diet, exercise and mindfulness/meditation to manage my condition. For example, I've decided to cut out gluten and seem to have a bit more energy as a result - I appreciate this will not be the same for everyone though.
I hope you find some of this useful - let me know if you want any more detail or information.
Thank you Mark for taking the time to reply to my post.
I can see the same pattern, that it does in fact take men just as long to get the answers as it does women.
Did any of your gps make a reference to your mental health at any stage?
I am sorry that you had to loose your dad in order to put things together.
I lost my nan at a very young age, she was my dads mum. I’d really like to see her hospital notes. As these diseases do seem to be passed down through our genes.
My dad has RA, one brother has Graves’ disease and another is cealiac and then there’s me 🤦♀️ Only I have been dealt the mental health card during my journey to find answers !!!!
I guess us women are more persistent at visiting our doctors with each new symptom, and you fellas know something isn’t right but tend to most likely self doubt or not want to come across as a hypochondriac to your gp? Either way it seems we all suffer for longer than we should
My mental health has suffered but I was slow to admit it. Knowing that you've got a lifelong condition is hard to deal with. Before Xmas last year, I started having difficulties at work because of my fatigue, this led to me feeling anxious about my ability to do it and I found myself in a vicious circle. I did discuss this with my GP and she pointed me towards Talking Therapies. I referred myself and have now had 3 sessions (CBT). I wish I did it sooner! I've always been proactive in trying to manage my physical condition but mental health is just as important and now I'm more open about discussing it.
It sounds like it's been a long journey for you too trying to piece things together. I don't think SLE is hereditary but there you can have a genetic disposition towards it.
Oh wow I think your really brave to admit the mental drain this has caused you ! And I’m so glad you did your self referral and that this is working for you.
I am currently off work, I can relate totally to your self doubt. Some days I felt like I was reading German, nothing was making sense to me on a bad day. I must admit I’ve always been quite strong headed but at the minute I feel pretty deflated in terms of the work I was producing.
I have just done my own self referral. It’s good to know we all seem to have access to this kind of support.
I’ve heard great things about CBT, I could do with this to try and help me sleep better x
The research by MelanieSloan from University of Cambridge may shed some light on this. They've finished collecting responses from their survey and are now analysing all the data. When the findings are published we will be sharing them here.
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