Well being a bloke..............................the hard way, I suppose!!!
Let me introduce myself, and as briefly as possible try to explain who I am, and where I am at.
I am Adrian, I am 48...........ok, ok, nearly 49!! And if indeed it turns out that I have Lupus (as yet to be confirmed), then I have probably had it for around 28 years, or more, and being a bloke I have managed to disguise, make light of, cheat, come up with clever simple bloke work arounds to my many symptoms, and lied (yes even to myself at times) just get on, just to get through whatever I have been experiencing at the time.
Way back in the distance and fog of memory, I had a very high pressure, very consuming career and I was responsible for making snap decisions regarding tens, frequently hundreds of millions of pounds worth of business on a daily (almost hourly) basis. I would work an average of an 80 hour week (often much more), and for relaxation I ran a charity and diving school aimed at disabled and disadvantaged children. I also dived (Scuba) a minimum of 3 time per week often night dives where I could fit them in and every weekend all over the world. I have over 30,000 hours of logged dives to my name. I even took a long weekend in my mid thirties to fly to Peru and dive Lake Titicaca (the highest navigable lake in the world) just to take some pictures.
Slowly, but surely though over the years I let these activities, these responsibilities fall bye the wayside one after one (yes even the exciting career), often using one excuse after another, lack of time, too busy, or even just needing to face another exciting challenge (which obviously never materialised). Never once telling (even myself) that I was slowly but surely losing the ability to generate the energy or even the motivation to sustain them anymore.
It started (I think) one evening with what I thought was going to be flu, I applied copious amounts of cheap vodka and tucked myself up in bed. I drifted to sleep safe in the knowledge that I would awake the next morn feeing terrible, and the fever washed over my slumber. I woke early the next morning in some discomfort and more than a little confused as to why I couldn't move properly, I soon discovered the very large (child's football sized) perianal abscess that had developed overnight. It was laid open in hospital a couple of days later, but it proved to be a plague that I have suffered very regularly ever since. Perianal, and Pilonidal, became my buzz words for a number of years. I had a name, I knew the symptoms of their onset and I very quickly learned how to deal with all but the most serious of them myself so that only a very few would result in me having to attend hospital. Having said that I have had the same procedure over 20 times to date. But much more often I would (and still do) lay in a hot bath and open them myself and then follow that up with a quick trip to the GP to acquire some more antibiotics just to avoid further infection, always of course playing down the seriousness of my suffering. Like I said I am a bloke and I found and continue to find simple practical work throughs and tricks to deal with and cope with many of my symptoms. I go to the GP or hospital only with the worst (most unbearable) of my symptoms at the time and as soon as I get an explanation or diagnosis that makes some kind of sense to me, as soon as I have a name and am able to do a little research, then I am happy and assured that I will find some way of dealing with it, some way of carrying on, of coping.
Eventually, around 20 years ago a junior consultant suggested that my abscesses were HS..........BINGO!!! I had a new buzz word and was even more assured that my self coping was the way forward. I knew that I was safe self caring through the now very regular attacks. I knew the symptoms of onset, hell I even started to plan my care by ordering antibiotics in advance when I knew that I only had a couple of days before an attack. The flu like symptoms were a dead giveaway. I even reasoned with myself that I never seemed to get a cold or flu, or indeed any other kind of bug, and yes my condition was embarrassing but, I now was very practiced in dealing with it and I had after all only worsened my condition once in all this time and I could now cope better with my symptoms than I could with the dreaded flu. I batted on!!
The stomach upsets and uncontrollable bowl was some years later explained as Crohn's...... BINGO once again! Around 4 years ago the stomach discomfort (my code for excruciating pain that would often knock me off my feet got given the label of Diverticulitis , once again off I toddled with my little label, happy as Larry that I could explain it away, that I could cope. The summer rash was explained away several years ago as 'prickly heat'. No matter to me that none of the preparations that I was prescribed or it ever worked, that was just me, just he way I am, and I would just have to accept the fact that when the sun came up I was going to get a rash that would not recede until the onset of autumn (at the very earliest). The blinding headaches I explained away as stress, or too much VDU work or just being run down. The stabbing pains in my wrists, my knees and ankles was just a sign of me getting older, or the inevitable result of the terrible wear and tear of my abused body. The weakness and pain in my thumbs that made it impossible to even pick up a pen were............just me being weird. My feet swell up the second the seasons start to warm up to the point that wearing shoes and socks becomes painful, sometimes impossible, this one was easy and didn't need a name, for several years now as soon as the weather warms I start wearing flip-flops and shoes 2 sizes too big for work! The inability to any longer just leap out of bed in the morning as I once did, because of either the crippling pain in my body, especially my sides and lower back, or even without the pain knowing (through bitter experience) that if I do just bounce up then my knees and ankles will just fold under me is just explained as me just getting older.
You see I am a bloke, and I have been (and am still) bloody useless with my health. I have (up until now at least) got away with it.
Then around 4 months ago I once again started with a bout of abscesses and although I prepared myself well and self cared as usual, they persisted and I continued to feel ill for a number of weeks, gradually becoming weaker and ever more depressed up to the point around 4 weeks later when I had run out of energy and had to succumb and I had little option but to sign myself on the sick. Even though my working week is now much reduced and I now work no more than a 36 hour week in a very relaxed undemanding job, I could no longer just get up and carry on. I consulted my GP, and the only other titbit of information I allowed him was my depression which I readily explained away as being caused by personal pressures. He signed me off with nervous tension and away I went to recharge and self heel, only this time it isn't happening and I appear to be getting gradually worse. The abscesses have stopped (thankfully) but the other symptoms that would normally assuredly begin to fade seem to be getting more intense. I was due back at the GP surgery late last week for the results of some bloods (the GP was investigating the presence of Celiac) and after several years of constant nagging from my mother, and at the insistence of my new partner, I blurted out nearly all of my other symptoms.......................................it took him about 2 seconds to suggest Lupus and he highlighted that I had shown several markers over numerous years to suggest the illness but no mention of it was ever posted with any of my several biopsy results. He has referred me to a Gastroenterologist for further investigation.
So here I am..............a bloke desperately seeking information so that I can build my coping mechanisms, and yet the more that I learn (for the first time in my life) the more I become scared. I am in need of making contact with someone who knows what I am going through, understands the next stage(s) and how diagnosis will happen and what happens after that.
OOOPs sorry that was longer than intended
Written by
adrian_holland
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Well firstly welcome to the healthunlocked site, you will see how friendly and supportive it is on here and it's great to speak to people who understand what you're experiencing.
Whilst I couldn't begin to say if you have lupus I can tell you that most people on here travel a long medical road before diagnosis, and one thing that many share is the falling into place of anomalies over the years prior to diagnosis. For many people when they are diagnosed it all starts to make sense. You are obviously someone who researches your health and symptoms and for that reason you may actually find some relief if you are actually diagnosed with lupus or any other illness.
Diagnosis can be a bit of a nightmare with lupus and is often made following a detailed medical history and positive blood results combined with physical examination. I hope that your forthcoming appointment gives you the answers you are seeking and along with many others on here totally understand how you feel when you see your career and social life changing beyond recognition - it's such a massive change for us to accept and come to terms with.
All in all I wish you well and hope you begin some treatment soon.
Hi Slowmo (great name for the way that I feel right now)
One thing that has already begun to feel a little alleviated is the feeling of being alone. I am sure that I will find being on here a great help and am sure that sooner or later I will be contributing in helping others as I begin to get to grips with my own condition.
I am quite new to the community also and I think I've become addicted actually. I am off sick at the minute and all I seem to do is to check out what's being said on here.
Any way I have found it quite enlightening as I read people's posts and realise its something I've been putting up with. Like you fobbing it off as just getting older, one of those weird things etc. I think for me it was when the fatigue and depression hit so that I couldn't function safely at work that I really realised there was more to all these things but it wasn't until my bloods where taken by a colleague ( probably sick of hearing me moan about my knees so much) that Lupus was suggested.
It's taken over 2 years, possibly 3 now, since those original bloods where taken to get a yes you have connective tissue disease and like you, I can go back even further, to weird illnesses. Pleurisy and pneumonia when my youngest child was a few months, old being one. Where that came from I have no idea but it happened again a few years later.
The good thing is its something they seem to be getting to understand a lot better , although they still have some way to go with the worst case scenario's.
Keep to the most up to date info. I got a couple of books but they tend to say the same thing. It gets a bit repetitive actually and even then the poor memory has you doubting if you actually read that correctly.
I was a bit wary of the treatments at first but hydroxychloriquine was brilliant. I had what looked like acne all over my chin. As well as redness that made me look like a heavy drinker - nice lol. As a woman in my 40's I wasn't too impressed, having not had the problem in my teens! Anyway it got rid of that straight away. The fatigue got better and for a while I was doing brill but its still evolving so further joint pain increased DNA bloods and elevated ck mean I've been put on methotrexate too. I knew something wasn't right I've been struggling again especially over Xmas and since. No parties for me this year - 1 works do only.
Anyway I'm rambling. Welcome, be careful where you get your info and good luck when you see your doc. X
Thanks for the reply, one thing that is already beginning to happen is that the feeling of being alone is beginning to evaporate. Like you I am sure that I will find this site a great help and hopefully sooner or later I will be contributing and helping others as I slowly come to grips with my own condition. (was that come to terms? Or did I really mean begin to accept?
I have forgotten already what I was going to say!............
Erm... Oh yes. It's funny how once your journey has even been suggested a name (no I haven't yet been diagnosed, though my GP has suggested the result), that you begin to notice the little complications that have somehow filtered into your life and just accept them for what they are, just little diversions on your trip.
A couple of funny?? Frustrating things have happened to me already today, and we haven't even reached lunch time (yesterday I hadn't even managed to get out of bed by lunch!) First I came downstairs to be greeted by an accusing look from my partner, she was waving some DS game cases in my direction. I had been selling a DS and a selection of games on the bay and had posted them yesterday. I had posted the DS successfully but somehow managed to forget to pack the stack of games that were on the table next to it, even though the stack was around four times the size of the console that I had sent!!! Oh well there goes any profit in postal charges!! And then I was due to have a troublesome tooth pulled. A simple enough little job one would have presumed. But oh no not in my life! After pulling me around the consultation room via a pair of pliers for around ten minutes my tooth shattered and I had to have several pieces cut away from my gum. Well at least the pain barrier remains fairly high, and at least the dentist refused to charge me for the 30 minutes or so of pain that he had treated me to.
The last thing my dentist said to me on leaving his surgery was that I was to remember that it was very important not to suck........ my reply was obvious...........'Life does!!'
If you're looking for more information about lupus, including how it is diagnosed, I can send you one of our free information packs. Just send me a private message or email paul@lupusuk.org.uk with your name and address.
Firstly - welcome to the forum, you'll love it, I promise. In the depth of confusion, despair, frustration, brain fog etc that lupus makes us experience daily, this forum will be your ray of light, you watch. You'll understand symptoms you've had for ages but attributed to benign stuff, you'll be able to see how other doctors treat other people in different parts of the country, you'll get space to vent and rant, or just ask for support, or when too tired to contribute, or help others, just read what others are going through and thank them for sharing.
Secondly - great post, yours. If you've never considered blogging, you might want to do so. If you've got a blog somewhere, let us know, we might want to follow.
Thirdly - I understand the need for labels completely, I'm the same, even down to the research. It drives me mad not to know what causes something. Lupus will keep you 'entertained' for ages this way - symptoms pop up all the time and although there is the 'lupus' label, you'd still want to understand what within lupus causes the particular symptom. If you're like me, you'll delve deeply into T-Cells and B-Cells and immunology - fascinating stuff. Not that anyone's the wiser, loads of new research at the moment as the research community realised there's more to immunology than meets the eye.
Fourthly - lupus seems to love great achievers. The more we pushed ourselves to live this life to the full doing what we loved, the more shocked we were to be hit by lupus. Irony here?
Lastly - about diagnosis and treatment. Many of us had difficulty convincing our GPs that our weirdly unpredictable symptoms were more than just due to stress or anxiety. It took me 2 years to get mine to send me to a rheumatololgist who diagnosed me in a flash and started treatment immediately. But diagnosis might not come so quickly, particularly as the blood tests might not be clear cut. Be prepared for a lot of reluctance from doctors to diagnose and push as much as you could every step of the way.
Treatment will depend on what that doctor is comfortable with. You might be started on prednisolone (steroids) to reduce inflammation (in your body) and/or hydroxycholroquine (an anti-malarial that is the cornerstone in treating connective tissue disorders such as lupus - not that the mechanism by which this drug works is fully understood in the first place). The former have almost immediate effect but coming off them has to be controlled and the side effects of long term use are not good (which is why the treatment is usually short term). The latter has a delayed effect as it modifies the disease - usually 6-8 weeks before fatigue and brain fog/memory loss improves.
You'll be monitored for the first few months and if the lupus isn't calming down enough (say you continue having severe symptoms) your doctor might consider putting you on an immunosuppressant to dampen down the activity. Those have side effects affecting your blood, so you'll be asked to do blood tests regularly to ensure you don't get complications. There are several immunosuppressants used for lupus, depending on what your version is like - for example, Methotrexate is mostly used for those who suffer badly with joint pain but it isn't very effective on organ involvement. For organ involvement Azathioprine or Mycophenolate Mofetil are preferred.
Anyway, enough for now. I don't understand why you've been referred to a gastro specialist and not a rheumatologist. You need to see a good rheumatologist for lupus, gastro will only feed into the rheumatologist given your previous medical history. Get your GP to refer you asap, personally I'd go to a rheumatologist first, then gastro. Good luck.
Firstly thanks for the compliment. You know that even though fools seldom differ, great minds often think alike. And as I read my second instalment about how my day has started, I had the same thought that an amusing blog is in here somewhere. I would make a start but the dreaded fog is drifting over me a little so it may have to wait. I have however summoned up it's title ' Am I a Fish?'.....don't worry all will be revealed at a later date. I will let you know when I have it up and running.
Also many thanks for the detailed information. I have however (as always) complicated matters by moving out of my GP's area and now await my introduction appointment at my new surgery. I suppose I could always try to talk to my now ex-GP and ask him to change the direction of my referral.
Don't change it - he's right to send you to a gastro given the symptoms but the moment he uttered the words 'lupus' he should have sent you to a rheumatologist. Yes, I wouldn't wait - just call your previous surgery, speak to the GP and explain the problem and the need for urgency. Any GP from anywhere in the country can send you to any consultant you wish.
Before that though, I would do a local search at the private and NHS hospitals and see who the best rheumatologists are - once you've identified one or two, call their secretaries directly and ask about the doctor's experience with lupus, saying you're looking to get a referral from your new GP in this respect. Then call your ex-GP with a name - it makes everything quicker and easier.
I'll send you a PM, no point clogging this post, others may want to help too.
Hi Adrian - not much to add to what others have advised but I do agree completely with Purpletop about the referral needing to go to rheumatolgy first and formost - as well as gastroenterologist.
Rheumatologists are the ones who diagnose Lupus and related rheumatic conditions.
Mind you mine diagnosed me with RA two and a half years ago and I'm seeing one of his immunologist colleagues a week on Monday for a second opinion. I haven't got the blood for Lupus yet - mine are "equivocal" - but I don't really feel I have RA either and never have. Officially mine started in the joints three years ago after a bad case of food poisoning followed immediately by Swine Flu. But looking back I've always had health problems relating to my immune system, only I took these for granted having had them since I was a bairn. Alopecia, severe eczema, butterfly rashes on face, endless allergies, heat rashes, ENT problems and gastro intestinal issues etc.
So it was the severe bilateral joint pain in hands and wrists and knees that took me to the doctor - who thought it was post viral arthritis but took bloods just in case and they came back with high inflammatory markers but just a low positive for RA factor. It then took 9 months for the rheumy to diagnose me and put me onto Methotrexate tablets, and then Hydroxichloraquine was added in as well. Finally my awful skin and other side effects overwhelmed me and I came off both, had months feeling awful but with minimal joint pain and no swelling - just general malaise and stiffness.
I think I will probably be re diagnosed with primary Sjogrens eventually as my eyes and skin are very dry all the time and I have severe peripheral neuropathy - which GP believes in Raynauds. So my issues are all in my skin and nerves currently but I've gone back on injectable methotrexate having had a horrible reaction to Hydroxy. It is such a balancing act with these disease modifying drugs but they do work very well for me - even though it comes at a price.
This forum is wonderful for support and I've been made to feel welcome here despite not having a diagnosis of Lupus. I never felt the same sense of belonging on the RA site - which I feel must mean something about my autoimmune mix. Hopefully I will know a bit more when I get the second opinion and also when I've seen a dermatologist. I've become very interested in immunology since all this started.
Thanks for your support and advise, rest assured it's noted and will be followed. I hear what you are saying both regarding the people on here and the raised interest in the subject (but then I always did have to know how and why). Best of luck with the second opinion, I hope that after all these years I get a diagnosis quickly now................but then again. lol
When I was diagnosed with RA I thought, just as you describe with Crohns, "that's it and now I can get on with my life again now (once my fingers and knuckles can bend again and I can drive again)" but just as you say for yourself the RA diagnosis was just the start of another huge journey of uncertainty. My podiatrist says that we may be looking at one in ten thousand for me whereas RA affects one in a hundred. And the rarer it is and the more vague and changeable the symptoms are the harder it is for any doctor to pin down I believe. If you are "lucky" your bloods will tell the tale for you. Mine seem to just cause more confusion.
Also (re your bloke references) men tend to have lower pain thresholds than women because women are genetically programmed to cope with childbirth. However you may have different more blokish coping mechanisms to me (a 51 year old post menopausal woman) although I have to say that I relate pretty well to most of what you say!
Take care and good luck,
Twitchy
Hi Adrian, I am not going to bamboozle you with more info. Enough has been said, but I do want to praise you for your stamina and sense of humour. You need to laugh at yourself sometimes. Better than self pity I think. I'm sure that you will make every effort to get some of your life back, once you are on suitable medication. You do differ to the usual male 'species', because you haven't asked us if you are gonna die !!!! Lol...
but please bamboozle me with as much information as you can, I am a data sponge and at the moment, especially regarding this, I am still very dry. Please PM me rather than run the risk of blocking this post.
Hi Adrian and welcome to the site. I think what might help is to keep a diary of your symptoms and photos on mobile to show he rheumy when you see him/her. Also keep a note yourself of what your blood results are, particularly the ANA test and blood counts.
It seems a common thread that we have all had super busy life's previously and the one thing that is positive that I take from this is actually I notice things more now I have been forced to slow down a bit.
I think learning how to pace yourself if key to managing this condition (this takes time and plenty of frustration and setbacks to learn what is right for you). You will also learn that some people understand when you say you have lupus and others ask what it is. A popular line that we all have heard is "But you look well"! If you google the 'spoon theory' that will give a helpful explanation that you can give to others so that they may understand your condition better. It is also useful to contact Lupus UK and ask if there is any support groups near you that you can attend. It is great to be with people who do understand and you don't have to keep up the pretense.
Finally if you put into google UK Lupus Specialists it will direct you to St Thomas' website where they recommend Lupus specialists. I found out this the hard way as prior to doing this I got a rheumy who did not want to diagnose just treat the symptoms (apart from the fact that I was not on the right meds as was only on placquenil and this wasn;t sufficient). After a year and feeling terrible I asked for a change and didn't look back.
If you can also google the meds for lupus.....the hydroxycloroquine (placquenil) is kind of standard for a lot of us then there are the dmards, and the biologics, steroids and then the newer drugs like rituximab. It helps if you research them and you are in a better place to have a discussion with the rheumy if they suggest any to you. For me it was I didn't want oral steroids (though ironically at present I have just had a steroid injection) but now aware that if needed I would. If you put any of the meds into the seach engine on this site it gives you an idea of how others have got on with the drug.....again making you more aware.
Anway enough drivel for now......ask away Adrian and I hope you get to see a specialist very soon. Take Care.
hiya i just felt the need to stick my nose in lol .... i dont see a rheumy ANYMORE he didnt diagnoise me either , he was a totally waste of nhs resources and i told him so too , soz but u might find ur like this too my ex rheumy may have the qualifications in his chosen profession however not all of them are lupus & fibro aware and as they can not see ur pain ur judged , like you i worked through the 20 years of "symptoms" and i held back a lot too , i was diagnoised with IBS 20 years ago i felt like dot cotton keep going to the drs every week , i was a recruitment consultant iroinically i earnt the name sick note but i know ppl used to say" well she looks ok , or she got over that flu quick" and its only since being diagnoised 8th feb 2010 that all this slots into place, and id have probably thought the same too, it wasnt until june 2009 i was 40 meant to be in my prime lol i fled domestic violence then all the symptons from the past 15 years came at once , i lost the top half of my hair , i looked like bliming fryer tuck (have to joke cos that hurt , it is a vanity thing i know) then over xmas 2009 my whole body from head to foot was covered ,i had lesions and prickly heat everywhere, i was told i probably had stephen johnsons syndrome i was like wtf id never heard of this and was referred to a dermatologist which only took 3 weeks (rheumy referall took 6 months) dermy took 12 skin and scalp biopsys there and then put me on high dose of steriods and gave me another appointment for 6 weeks time for results i count myself lucky that i only waited 6 weeks and i was diagnoised with subacutanous lupus erythedermus again i said wtf i was given a fact sheet and a website page and told to read up on it i was also given plaqunil and again was told to read up , i was never told wot steriod/anti malaria did to ur body or what it helped with, to cut a long story short since 2010 ive been diagnoised with emphazema AND copd AND, pericardis lupus decided to attack my lungs im led to believe its because im a smoker "apparently so one of my fellow american sufferes told me if ur a drinker then ur kidneys are effected and if ur a smoker its ur lungs as it attacks the weakest part of your body , ive research till im blue in the face but cant find this info anywhere but because its in my brain and reading other sufferers there is some sence to it i think lol , what im trying to say is wat ever consultant you see ask them to copy you in any letters as this way you know as well as your g.p. what your diagnoises is you also have proof on paper should you wish to claim benefits hope ive helped a touch , good luck and remember every lupy sufferer is an individiual what you have may not be the same as anybody else sadly we are unique lol
Well you can all blame purpletop for this.... but I took his advice and posted a blog. Its on blogger and as promised is titled 'Am I a Fish' I hope any who read it will find some fun in there. I promise that I will trty to keep it going.
I'm on holiday in Turkey right now - best time to come; all the wildflowers are out and it's not too hot so I can avoid any possible 'sun' complications. We'll ignore the fact I'm sitting here listening to the howling gale building up outside!) and I was reading everyone's 'welcome Adrian' emails and thinking I didn't need to add anything to the information given - until I got to the spell caster! My husband Ian and I spat out our fruit-based drinks (for the lady); pint of beer (for the fella) . . . See, Adrian? Any sort of advice needed: you can get it here! Now, do you need a good recipe for peanut butter cookies? (Oh no, possible Coeliac - you'll never know what you're missing!)
So the only thing I'll say is 'welcome', and 'and we are all in the same boat here' - especially when it comes to (a) needing the labels, (b) doing the research and (c) finding comfort amongst fellow sufferers. I will add one thing: you said you'd just moved: make sure you find a GP who is going to *listen* to you (regular readers will know I'm going through this particular hell myself right now, but more on that later) and you owe it to yourself not to be fobbed off (sounds like you've been perfectly good at doing that yourself up until now; also sounds like now you know there's a problem, you'll do what you can to beat it into submission). So stick it out if you don't find the right one right away because your GP is your first point of call when you're flaring. So Welcome to the Forum! We're glad to have you. (I'm off to email the spell caster about the weather here . . .)
Welcome u are not alone . I am new to it took nearly twenty years and lots of different illness .numerous ops ...u will find a coping mecanism .i did ..welcome to this wonderful helpful site ..good luck .
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