For this month's blog we continue to share experiences from men living with lupus. This month's first article comes from Steve. Thank you to Steve for taking the time to share your story.
I'm a 53 year old male from Derbyshire who was diagnosed with lupus SLE in February 2014. I have to be honest, I had not heard about lupus until I was diagnosed.
Now that I am more aware of lupus and the symptoms, I think that I've had several of them for quite a few years, without them being related to the condition by my GP.
I'm not sure all these symptoms I'm about to tell you about have been confirmed to be connected to lupus but it does make you think;
The problem I've suffered with the longest (over fifteen years) is very bad abdominal pain and back pain with it resulting in excessive wind!! I had tests (endoscopy) but nothing was found and it was put down to IB., I've learned to live and tolerate it but it is still uncomfortable to this day.
Other problems I suffer with are; swollen lips a few times and itchy, hard, hot lumps, mainly on top of shoulders and on my head/neck which I've been told resemble hives - but I’ve not been told these are connected to lupus yet.
I've also had a small blood clot at the back of my right calf, and then in April 2014 I was in hospital for three days with a bout of pneumonia and I was off work for about five weeks! My worst symptoms at present are very painful joints (mainly finger joints), thumb pads, wrists, knee joints, and painful toe cramps.
I get bad pain in the base of my heels which makes it very difficult to walk at times; most of these happen in flare ups and are not present all of the time. I suffer with migraines; mainly in late afternoons when I’m at work - I still work 35 hour a week but a struggle at times.
The most frustrating symptom for me is fatigue. When I arrive home from work I feel shattered, I can sit down to watch a bit of TV and within ten minutes I can be in a deep sleep as though someone's given me an injection! I try to fight it but the fatigue always wins. I could sleep for a few hours but still sleep all night unless a flare up wakes me up!
I get nasal sores, dry itchy eyes, and dry mouth/lips especially on waking up. I suffer with swelling and fluid on my ankles; mainly my right one. I also have varicose eczema in my right calf area which after standing all day at work can become painful and leave a burning sensation.
I was advised by my rheumatologist to try Hydroxychloroquine 400mg a day in August 2014, which I only took for about three weeks as I started getting bad headaches and feeling light headed. When I saw him again in February this year he told me to start the medication again on a lower dose of 200mg a day and to persevere with it. At the moment it seems to have settled in my system (fingers crossed). I don't want to tempt fate but for the last three weeks I haven't been falling asleep as much, but still feeling tired out.
As I've only been diagnosed with lupus for just over a year now, with many symptoms, hopefully the medication and helping myself (diet, walking, cycling and swimming) things may start to settle down.
I have to say though, after seeing my rheumatologist, most of the time he doesn’t seem interested in the symptoms that come with lupus, he just seems to concentrate and talk about joint pain. I've felt alone and depressed at times, which I told him, but he just looked at me and said you shouldn't feel depressed with lupus but you can't turn around to him and say, ‘you don't know how wrong you are’!! So you feel useless as you leave the room and he says I'll see you in six months.
Hopefully I've covered most things at the moment and I hope I haven't bored you too much.
I'm open to any questions and I also look forward to any feedback from people who can see where I'm coming from!
We'll feature another story from a male with lupus later this week. If you'd like to learn more about lupus in men, you can read our factsheet online at lupusuk.org.uk/images/pdf/1...