[FranS]

Hi there everyone, I'm Fran (the S bit is my surname).

I was diagnosed with Discoid Lupus back in 1998 when a little was known about it but not as much as now a days. SLE was not well researched then either. I became a contact for DLE on the Lupus News Letter as there was no other contacts back then at all whatsoever, quite a few for SLE but not Discoid. I felt very alone as I was told that it just affected the skin & it was only with SLE that you got aching joints, headaches etc. That made me feel like a fake & that me aches & pains & tiredness were 'in my head'. Once I had my number publisised on the newsletter I had lots of calls from other sufferes with Discoid only & we all had the same problem - all the symptoms but no doctor would agree they were linked to our Lupus.

Anyway, after a few years it cleared up & went away. I had flare ups every so often but was on plaquenil to control it.

Throughout the past 4-5 years I've felt ill off & on, with cold/flu like symptoms, mouth/nose ulcers, 4 day headaches/migraines, fatigue so that all I can do it go to work & come home & sleep 14 hours, tummy problems (like IBS symptoms of when you gotta go you gotta go!), flare ups of the discoid rash, depression, aching & stiff joints/seizing up sometimes, various things that show my body is 'low' like ecsma (?spelling!), infections, flu (as I've said) etc etc...I'm sure there is more! Oh gynaolgical probs but nothing found as well.

With hope, as the knowledge of this disease has increase as has awareness, I've been to the Dr a few times & the last time he was sure it had gone into SLE but did a range of blood tests & nothing showed up, not even a raise inflamatory marker or if it was up it was only up slightly.

At the end of my teather as these bouts of tiredness/aching/various body failures are coming more often & are more severe. I'm so tired at the mo my memory is shot to pieces. My work life, relationship with partner, relationships with friends/family, social life etc are all suffering to.

I've seen the list of 11 symptoms of which if you have 4 then you can be diagnosed but my doctor says you have to show up positive on the blood tests.

Banging my head against a brick wall & feel like a fake & that I'm inagining it now & making a fuss.

I didn't mean to say all of this here - just meant to say hi, but its out now! Apologies if its in the wrong place.

Help please, I really would appreciate it.

Fran
x

 

[Cinnylyn]

Hi Fran- I'm Cindy. You sound just like me until about a year ago- I mean similar symptoms. Sick, all the time, for about 4 or 5 years; initially thought the pain was just that I was getting old... no explanation for all the rest: flu-feeling, headaches, exhaustion to the bones, bad bowels, terrible sun sensitivity! I can't say what exactly made the difference for me-- a naturopath helped a lot, then accepting that I have limitations, and learning the effects the sun has was huge. When I get tired I get sick, but I've been so lucky to manage well for the past couple of years, and blessed truly, to have been mostly well lately-- because stress doesn't help, and my old boss was a big abusive ass (thankfully I found a new boss who seems decent).

I feel for you- and send you kind thoughts, and lend a little of my energy today 'cause I can. It really ticks me that I can't do what I used to, and that I have to be conscious of my limitations- and that sometimes those limitations make me fearful, or angry. I am grateful to be working, and that it's a job where I've got insurance (because all that time I was sick before I didn't)... I hate those stupid people who bring their germs around when I have a hard enough time minding my own body. To top it off I tend to get down on myself and have a hard time remembering that only makes it worse. Cold makes it worse and the 20 inches of snow we got this week was awful when it's supposed to be Springtime, I really hate the cold, barometric changes, and that shift from summer to fall (dread) and winter to spring (no idea why but it's worse, as it started again this year I've wondered if it's the increased sun? From going to work and coming home in the dark to finally having light on both sides of the trip, is it possible that's it? There's definitely a link to the seasons changing.).

Please don't think I'm sounding peachy or preachy, but a week ago I logged onto the site when I was really really feeling crappy and discouraged, and the folks I met were so very kind that today when I came home (early, imagine!) I wanted to return the favour, or say thanks or something. I get scared sometimes, and feel terribly alone, and I am so very glad when I feel 'pretty good' that I hope it's contagious... because, as I say, it's damned frustrating and infuriating.

It's tough remembering what's good in life when you can't see past the ick of sick, but finding a couple of interests that make me get out and make me be as much ME as I can be kind of helps to keep me going. And I limit the bs as much as I can, because there's nothing that wipes me out faster!

I've yammered and yakked, if it only lets you know that you aren't alone. I've read research, realized there's an advantage at least being sick now compared to 20 or more years ago, appreciate more of what I CAN do, pray I don't experience much worse- I would ask, how much worse can it get? but it terrifies me to do so, so I stay blissfully unaware of where I might wind up, and thank heavens to be managing as I am.

Diet turned out to be a huge factor-- less wheat, less meat, less milk. It made the difference too to know my stresses, and let go of a few things with the goal of appreciating others, to know when to rest, to watch my reactions, and simply take time doing whatever I needed to do. The dr taught me to manage my breathing, which also was big. Maybe the biggest thing. Well that, and sunscreen or staying out of the sun-- spf 60... two years ago I was sick in the spring, again, and got a rash on my face, then got these spots on my arms that took my freckles away when they finally cleared up.

At the moment, I'm working full time. I wear sunscreen. Eat right. Kind of exercise (walking and stretches). I'm off meds except for over the counter when I need it (if I need it too much for more than a week, I see my dr).

Hopefully either my story will cheer you up by making you know you've got a sister or two on this site, or it'll give you a couple of ideas to try. Good luck, hang in there, just honour how you feel, let yourself rest, make yourself rest, and feel better soon. Oh- one last hint maybe for feeling better, Tiger Balm. It's the best-- smells good, warms the sore spots, clears headaches, on and on... I have to watch how liberally i use it because my skin's more sensitive than it used to be, but it gets deep down to kind of make a person feel better. Cheers. C.

 

[Katharine]

Hello Fran and welcome,

It's maddening when you feel so rotten and no-one will listen

I'm surprised that your doctor is so hung up on bloods. That seems odd to me (though I'm not the best techy person around, so Im might be wrong) as ANA tests, for example, may never come back positive a second time once treatment has been started. That's why many doctors don't test them after diagnosis. DLE can indeed become SLE for some people and for most good rheumatologists clinical symptoms will become far more important than any blood tests.

You are already on plaquenil which would also be the first line of defence in SLE but it sounds like it is not enough for you.

It might be time to think about getting a second opinion. I don't know where you are in the world and how easy that may or may not be, but I think you need to discuss ths with your GP.

I'm sure that someone who is better on blood tests etc. will be along to help soon, bye for now,

Katharine

 

[LolaLola]

Hello Fran,
It is not true that you need positive bloods for diagnosis. I was diagnosed and started treatment long before my bloods became positive.

Dr. D' Cruz is very good at diagnosis without positive bloods if you could get to him. Even to go privately it would be worth it.
X Lola

 

[FranS]

Hi there ladies,

Thanks ever so for your kind replies. I've heard of Dr Hughes, I tried to get a referal back in 1998 via GP but just got referred to the local Dermatogolist instead who only was interested in the rash. I've never heard of Dr D'Cruz - where abouts is he? I've been reading through the site & there is so much info to take in, I'm very grateful that things have progressed so much since my DLE diagnosis.

I'm going to go through everything again to make notes for the GP on wednesday, which I'm dreading - the last appt he said that if there was anything wrong with the blood tests he would call me, if not there was no need to make an appt!! i.e. if the bloods showed nothing then there was nothing wrong... not come back & we'll look into it further. Been in tears today driving around (delivery driver for a living, since Xmas - always office jobs before) with the pain in my joints, tiredness & fed up with it all.

Again, thanks for your kind words & I'll post more in the right place once I have more questions etc.

Fran
x

 

[FranS]

By the way, sorry I forgot to say I'm in Canterbury, Kent, UK
Fran
x

 

[LolaLola]

Hello Fran, Dr. D'Cruz works NHS at St. Thomas's. London and privately at the London Lupus Centre set up by Dr. Hughes.
I have been lucky enough to see both of these and they are real Gentleman and great at what they do.

For what it is worth you should know that I felt really ill when my bloods were still negative, so don't go feeling you are not genuine. Mine were negative for years, by the time they changed I had been treated for some time and they were no longer an issue.

If I had carried on with the local Rheumy I would never have been diagnosed, they just wanted to shove me off to a Pain Clinic!

I had my first appointments privately with Dr. D'Cruz and was diagnosed in three weeks flat after years of struggle.

If you are interested in going to London either privately or NHS I can recommend it. The only thing I will say is that NHS follow up appointments are not frequent, you may well only get a yearly follow up. IF I really need it I get a private one in between. (We are not made of money but at least I get High rate DLA)
X Lola

 

[Clare.T]

Welcome to the forum Fran !

I know exactly what you mean about the lack of information about skin lupus.
I was diagnosed over 30 years ago with 'discoid' when there was even less. I spent two decades being told my lupus was limited to the skin and the arthralgias and fatigue were due to lack of exercise being overweight and poor life style.
Finally, I had the great good luck to find myself in the right place at the right time and through a forum contact was put in touch a brilliant specialist in the skin problems associated with connective tissue diseases. In fact I didn't have 'discoid' but another sort called subacute cutaneous and by that time I did have positive ANA and anti -Ro antibodies.
With the right treatment my joint aches and pains vanished I got renewed energy and my skin improved 90% and I went into remission. Subacute luckily isn't scarring

That forum contact turned out to live not far from me so we were able to meet up and together we founded an online support site called " Just for Discoid ( Cutaneous) Lupus", to meet the very neglected needs of those whose lupus primarily affects the skin. Each person's lupus is 100% important to the sufferer even if it is only one discoid lesion. Even doctors who should know better make us feel bad about our concerns.
To stick to the point, it was very clear that many of those people had other symptoms of lupus but no lab evidence of SLE. This doctor told me that it is quite common in fact.
The nub of the issue is that any sort of lupus needs to be treated as necessary to get it under control and improve and maintain quality of life.

If Plaquenil isn't enough then there are other disease modifying meds to be tried and of course worsening symptoms and new ones need additional investigation and treatment too, regardless of bloodwork. It is important to make as sure as possible that other diseases aren't causing the symptoms that appear to be lupus related.

I would suggest you go as a first step to the private London Lupus Centre to get some answers and hopefully jump start on the path to better health. Dr Hughes retired from the NHS and the Lupus Unit at St Thomas', to head this new Centre. Many of the doctors who work at St Thomas like Dr D Cruz also work there and there are other well known specialists. I live in Greater London and go to St Thomas' where I see Dr D Cruz about whom I can't speak too highly. The vast majority of St Thomas' trained doctors aren't hung up on bloodwork.

By the way I take a stronger form of Plaquenil and another anti malarial called Mepacrine that works extremely well with it, plus a low dose of Azathioprine and 75 mgs aspirin. St Thomas is keen on the anti malarial combo. They even offered me MMF/Cellcept since some patients on it for SLE have found it helps their skin.

Keep in touch and let us know how you get on please

All the best
Clare

 

[Kate G]

Hi Fran

Do you know which blood tests you've had that have come back negative? Because there are so many autoantibodies created by lupus, it can take a while for someone to do the right test to find them. I also agree that some docs are too obsessed with getting positive ANA, when they should be paying attention to your symptoms instead.

Of course, there is a chance that you don't have SLE, that maybe you have DLE plus fibromyalgia or something like that causing the fatigue and joint pains. I don't know how FM gets diagnosed I'm afraid.

Whatever you have, good luck with getting a doc to pay you some more attention and I hope your symptoms improve.

Kate G (Bristol, UK)

xx

 

[FranS]

Hi ther everyone,

Thanks for the replies. I think I tried Mepacrine before the Plaquenil & I have a feeling it made me ill (upset my tummy I think) but am willing to try it again if I get prescribed it.

I had my appointment with the GP...had a very (unusal) determined head on & told him I wanted a referal to St Thomas' not a local specialist of any sort - gave him Dr D Cruz name & got a letter from my GP with a referal thingy on it for me to call & make the appt!! Yippie, one step closer to...well something, hopefully a diagnosis! Called then no & they said someone would call back & give me an appointment, which they haven't done yet but I'll chase it tomorrow.

Anyway, gonna have a grumble in another area (which ever is more appropriate) but just wanted to thank you all for making me feel welcome.

Fran
x

 

[pennylp]

Hi Fran,

Just wanted to say welcome to this wonderful site... I know you will get the support you need here... People on this site are very informative and are willing to help you when you need it...
I can't add anything to what everyone has said... I just wanted to say welcome...

Love Penny