The Lupus Forum banner
1 - 5 of 5 Posts

2 Posts
Discussion Starter · #1 ·
Hi folks,

For many years I've been having some sort of condition going on, where I'm fatigued, tired, sleeping poorly, randomly achy, and with depressive tendencies, also frequent low fevers for now apparent reason.

Over the last few years this has been getting worse, used to be a few episodes a year, now it seems almost constant, very few good days.

Also been getting a scalp and face rash, rash is across the nose a little on the cheeks either side, in my eyebrows and a spot each side of my chin, this is red, seeps if I scratch at it, goes scaly after a couple of days and flakes, and sometimes burns a little. Also get something like that in my outer ear. Mostly it's just red. Seems like it's in spots on my scalp, hair is thinning and seem to be losing it.

Also have a permanent rash in the arches of my feet, gets itchy/burns.

Been having neural issues, funny tingles, numbness, weakness in arms.

Often feels like my heart or kidneys are inflamed, they feel kind of achy quite often.

Also have had for years a rash that comes on my feet and hands which is pustular, comes up from underneath, small fluid filled blisters, always assumed this was palmar/plantar psoriasis.

Joint pain has been more noticable recently.

Always felt like I was sensitive to the sun, feel kind of itchy sometimes when I get much, and it seems to fatigue me, being in bright sunlight very long, but doesn't feel like it has a direct effect on the facial rash.... however I've been a cap wearer for years out of habit for it seeming to help against the sun. I seem to feel bad/tired/achy a day or two after much sun exposure.

Have periods of digestive troubles, when I seem to get backed up, or can't stomach anything.

Been having spasms lately when trying to relax.

There's a myriad other small things I keep saying "oh yeah" to when someone mentions them, but I keep forgetting what they are unless they are bothering me right this minute.

Anyway, it seems to be getting worse, I didn't have a doctor until last year, I couldn't face going with a load of vague "well sometimes I don't feel so great" symptoms... but it was getting bad so I went... she gave me a checkup with basic (thyroid, blood count, electrolyte) blood tests... seemed to ignore everything I wrote on the questionnaire (Have you ever...) and told me I was fine... seemed to have an attitude that I was a hypochondriac and told me to remember to have a checkup next year... which came across as "Don't bug me again until next year". My facial rash was not prominent at that time. I don't know if she realized it took me 10 years to go to a frigging doctor.

So of course I have been over the years looking up various syndromes and diseases on the web trying to find something that seemed to fit... I only just recently realized that lupus seems to cause a lot of the symptoms I'm having... I had it in my mind as a more angry rash that causes skin discoloration and didn't know about the systemic problems.

The huge problem with going to a doctor again, and in particular this doctor, is that in 2 weeks time when the appointment comes up, I'll probably have a different "set" of the symptoms mentioned, than when I made the appointment and maybe another when I get the follow up 2 weeks later, or I'll have a stinking cold (I'm also very susceptible to every cold, flu etc that's going around, if anyone I know gets anything, I'm practically guaranteed to) or it could possibly fall on one of the very few days of the month where I actually feel pretty good.

Oh by the way, I did have a little of the pustular rash on my hands at the time and showed it to her, and she just kind of said "oh" without confirming whether it might be psoriatic or offering ANY suggestion, advice or treatment. :mad:

So I'm kind of feeling a bit screwed, I don't know if I'll get anything out of this doctor if I push her, could use some actual medical work doing to rule out MS, psoriatic arthritis and any of the other dozen conditions that cause constant fatigue etc. In this area too, it's freaking hard to find a doctor that's taking patients, priority given to those who don't have one, I don't know what my luck will be with that to go elsewhere when I've now officially got a doctor. Not sure if I could go direct to a dermatologist without a referral to ask about the rashes and whether that would be any help... actually, I don't think it would. I'd been into a walk-in clinic for pressing medical needs a few times before I got this doctor, throat and sinus infections, mentioned to her about having frequent infections, and she implied that the walk in clinic doctors didn't know crap and just handed out antibiotics willy nilly (i.e. that I'd hadn't actually had any infections) so... if I went to a dermatologist and they suspected lupus, I don't know if my doctor would actually accept that or not... so I think I need another doctor anyway.

Well anyway, does what I'm describing sound close enough that I should really push for specific testing, or is it gonna mean that the only thing I get out of this doctor is a psych referral for hypochondriosis. :rolleyes:

thanks for reading,


279 Posts
hi Flashman

get your GP to get you a appointment with a rheumy.

Keep a diary of symptoms every day to take with you. Also take pics of any rashes. As they come and go.

My Dermy wouldnt commit himself with my skin probs till he had skin biopsy results back. So perhaps thats why your GP wasnt forthcoming.

Be brave:p go back to GP insist you want a second opinion

take care


7,800 Posts
Hello Flashman and welcome :)

I don't know what kind of doctor you have been seeing but I would also strongly suggest seeing a rheumatologist as your symptoms certainly merit further investigation and ruling out an autoimmune disease is important.

There is a list of ACR criteria at this link.
It might help you to see that all these little things can indeed be very relevant and if the doc is not taking all the symptoms onboard then it is time to look for another doc.

It is usually a rheumatologist who specialises in auto-immune diseases (of which lupus is one) but some people here also see immunologists for global treatment and then, of course, dermatologists, neuros and so on for more specific problems.

You need to be careful when checking out a rheumy to find one who is specialised in auto-immune diseases (not all do and lupus etc. are all very complex). If you need help on that score there is a "find a lupus doctor" section here on the forum which can help find someone in your area.

Usually the first kind of "screening" blood test that needs to be run is an ANA test. You could try asking your GP is she thinks "that it might possibly be something auto-immune..." to try and prompt the test getting done but if your GP is this doc your talking about that might not be easy. Certainly don't go to a doc saying "I think I've got lupus" they don't tend to take it too well :wink2:

BTW, If you're GP is this doc then, yes, you do need a new one, you'll never get anywhere without a referral to a specialist. And, just in case you're wondering GPs usually don't have the knowledge necessary to recognise lupus even if it hits them in the face. You need specialist referral and specialist bloods drawn.

Also, I'm presuming from your screen name that you're a man? If so, you will know that lupus is far less common in men. Unfortunately that leads some docs to completely discount the idea!

bye for now,

4,968 Posts
Hi Flashman and welcome to the site.

I will echo what the others have said in that you need to treat with a Rheumatologist, very important. A series of blood work will be done starting with a ANA test, etc...

Lupus effects us differently and mimics many things so it is important to rule out other things first before getting a dx of Lupus.

I carried the dx of MS for over 3 years before things started to show up in my bloods that point the doctors in a different direction.

I wish you well moving ahead and good luck getting to the bottom of this. You know your body best and if your not well then push until you get some real answers.:wink2::wink2::wink2:

4,444 Posts
Take pictures of your rashes, as they are a definite visible symptom that can't be easily brushed aside. Yet they have an amazing way of nearly or completely vanishing just in time for a doctor appointment. I would recommend going to a dermatologist as many people here have been diagnosed by a dermatologist. The best dermy's out there... if you mention you have other symptoms like joint pain and fatigue that are severe enough to interfere with your daily living... will think beyond the skin issues alone and either test for things like ANA themselves and/or refer you to a rheumy.

You shouldn't need a referral to see a dermatologist, but you usually do need a referral to see a rheumatologist. At least that is the way it works around here. If your GP does not believe in your symptoms, a referral may be hard to get. It would be worth trying though. Good luck to you - I think psoriatic arthritis sounds like a real possibility and lupus is also a possibility too.
1 - 5 of 5 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.