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Discussion Starter #1
I don't know if I have Lupus, but I think it may be a possibility and would like your opinions on one of my symptoms. (I'm not looking for a diagnosis from you don't worry! I'm just looking deeper into possiblities and trying to educate myself a little more)
I get painful and swollen fingers and wrists, but the fingers are bad. This was at it's worse about 15 years ago and was made worse by my work. At that time they would swell alot in the mornings like bunches of bananas! The joints would be like creaky doors and they would be very painful. Running them under hot and cold water would get them useable again very quickly but they where always stiff and painful. When I left work they got a lot better - just flaring up once in a while. Recently they are flaring up again being mildly painful all the time :worried:
When they where very bad I was sent for x-rays as it was thought I had arthritis, but no joint damage showed up and after lots of umming and arring by the Drs I just put up with it. 'Cos they had no idea really :rolleyes: .
So my question is, does this symptom sound familiar to any of you guys?
I should say that as far as joint pain goes I have also suffered with my knees badly and other joints also but not as fequently or bad.
My acumulation of problems started in my teens, I am now in my 40's. Is this common?
Sorry for rambling on.....

Thanks in advance :)
 

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Hi again,

Those symptoms would be quite similar to those experienced by quite a lot of other people here. They certainly merit further investigation. However auto-immune diseases are very complex and lupus is the disease of 1000 faces so symptoms can vary greatly.

Has your GP ever done the ana screening test? Have you ever asked for a referral to a rheumatologist?

Katharine
 

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Discussion Starter #3
Thanks for replying so quickly Kathrine :)

Lupus has never been mentioned to me before (I only discovered it this evening!) so I haven't had any tests for it as far as I know. I do have other symptoms like skin rashes on my face (I thought it could be ezcema) and tiny blisters on my wrists and elbows (again I thought it could be ezcema). I suffer with fatigue (sometimes severly) and deppression (all causes always ruled out!) and anemia. I always seem to have protien in my urine (I'm told it is a touch of cistitus, hummm, but it doesn't hurt!) and I have had broken capilaries since a teenager mainly in my legs. I've lived with these things so long that I can't remember them all now, I'm sure to think of more once I've posted. :lol:

I don't like to approach Drs as their reply is always "there is nothing wrong with you" or "there's nothing else we can do". I'm not a hypocondriac by the way. I just get on with things now rather than looking for answers....... well until today :lol: And I don't think I'm about to drop down dead!!!;)
I feel the need to be more convinced that it could be Lupus before I approach a GP.
 

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Hi there

Welcome to the Forum. Here are two links to posts on the boards about SLE Classification Criteria and the St. Thomas Alternative Criteria. Have a look through them and see what rings bells for you.

http://www.thelupussite.com/forum/showthread.php?t=33123

http://www.thelupussite.com/forum/showthread.php?t=63963

You are at about the same stage as I was about three years ago. I had never heard of Lupus and I was trying to get answers for the symptoms I had. It wasnt until I was well into the diagnostic process that I even realised I had many of the symptoms but never linked them together. Like you I didnt want to bother my GP with a lot of 'incidentals'.

I suggest that you do what I did at the time. I started keeping a diary of my symptoms on pretty much a daily basis. At the start of this diary I did my best to recall any health issues I could over the previous couple of years - as a sort of introduction if you will.

I was helped by having a good relationship with my GP. I told him I was concerned that the various things that were happening to me might be connected and he ran a few blood screening tests.

The first one that is usually run is the Anti Nuclear Antibody test. Although this wont diagnose Lupus it can certainly indicate that there might be an autoimmune problem and if the titre is high enough it will get you a referral to a Rheumatologist who specialises in connective tissue disorders.

The best advice I can give you is that if you dont look after your own health, no one else will. You have a number of symptoms that would concern me including fatigue, rashes, anemia, protein in the urine, etc. Lupus can damage internal organs with the kidney being a favoured one. There is no pain associated with kidney damage from Lupus and kidney failure can occur if things are left to go on too long without treatment.

The only way you can know for sure is to insist on some investigations. Be a pest and dont let them brush you off.

The best of luck and let us know how you get on

Take care
Joan:rose:
 

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I have two questions for you... Are the swollen fingers and joints warm to the touch? Do these problems happen symmetrically (that is on both sides of your body at the same time)?
 

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Discussion Starter #6
Thank you so much for your replies. I really do appreciate it :)

Joan, thank you for all the information and advice. I will deffinately start keeping a diary, that is an excellent idea. Typically, I feel better at the moment than I have done for years! But of course that doesn't mean sympton free ;) It is comforting to know you have been in my position. I have come to realise over the years that you have to diagnose yourself before GPs can help. I find it easier to say "this is what I need/want/think I have" than to explain symptoms and hope they have the answers! It's not a slite on Drs, I just realise they don't actually know everything or have all the answers!

audigg1, Well right now my hands are painful..... the backs of my hands are cold and the fingers are warm/normal with the fingertips/nails very warm to touch. They feel clamy too.
They are warm in the morning when they are at their worse, but often they get very cold (though not swollen then, they get very stiff).
It is always both sides at the same time.
Does that mean anything to you?
 

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:) Hi and welcome to this great site. Lupus is a very, very, complicated disease, and is one of the hardest to get diagnosed. You have an array of symptoms, which at first I thought of RA. But then you do have some of the other signs, although I don't remember if you said how long you have been dealing with this. Either way, I would deffinately do two things. Call your GP and ask for a referral to a Rheumatologist, and don't be surprised , it usually is a long wait,so make the appt now. Second start your diary.
Also make a seperate list of just your symptoms, that one,
you will make a copy of, and when the appt comes you give one copy to the dr and tell him that it is for him to put into your file, you keep the other one to add to at home. I hope we have helped, and let us know if you need anything else.
Be well.:wink2:
 

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The reason that I asked is inflammation causes warm joints. Things in Lupus happen symmetrically. I don't know about RA, though.

audi
 

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Hi 2cay2,

I agree with the others in that you need to push for answers on this. If you keep pestering your GP with all your problems then they will see that a referral to a specialist is probably needed and that will be your first step in helping to sort this out.

Audigg, my joints are not affected symetrically (same joints, same time) with my Lupus. Some articles state that is the case but I think from past discussions here there are many like me. Likewise my joints arent always hot to touch either. Sometimes there is visible swelling/redness and inflammation other times they just hurt which is called arthralgia. That's very common in Lupies for their joint pain.

love
Lily
 

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Actually as I understand it, according to the literature, with RA the joints are usually effected symmetrically as well.

Im much the same as you Lily. I dont always have symmetrical joint pain and my joints arent always hot and swollen either when I have pain in them.

It could be my left wrist today, my right ankle and left knee tomorrow....

Luv n stuff
Joan:rose:
 

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Lily and Joan,

Add me to your list of lupus sufferers that do not have the same joint on both sides, inflammation at the same time..Mine do not always swell or turn red either..Sometimes, though not always...

Sandy
 

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You can add me to that list to that do not have the same joint pain on both sides at the same time.
I could have it in my hand one day a foot the next etc.
My lupus likes to keep me guessing as to where it will hurt next.:eek:

Take care,
Lyn
 

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For those of you that don't have symmetrical pain... is the pain mostly in your dominant or non-dominant side?

I usually get the pain symmetrically, but slightly worse in my left hand. However, I have mixed dominance with my left being predominant, but my right being more than just "the other hand." If that makes sense....

audi
 

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Hello ! :)
The trouble with lupus is that there are very few specific symptoms and not everybody with lupus has them. There's also an enormous number and range of possible symptoms many of which resemble those found in other diseases, either similar or quite different.
Certainly there are times when lupus or a very similar sort of disease can be highly suspect but it's a very bad idea to announce to a doctor that you think you have lupus. Saying that you think you might have a chronic rheumatic type systemic disease is another thing, something like lupus perhaps, if pressed. Of course if a doctor has mentioned lupus you can say so when you get a referral.

The best place to start is at the GP with the firm intention of finding an answer to these recurring health problems and requesting a full blood count urine test and an ANA test. You could also request thyroid, diabetes and pernicious anemia while you are about it !
It's already been suggested that you study the info about signa and symptoms and the criteria lists to see what you can relate to in your known health experiences.

Hands and nails can provide important diagnostic clues and will be examined by the specialist. Similar looking symptoms can have different interpretations though- it all depends on other symptoms and test results, and the clinical judgement and expertise of the physician above all.

Bye for now
Clare
 

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Audi,

My left hand/wrist is more often affected, as is my right knee. They are the most prominent and more severely affected. I'm left handed but slightly ambidextrous :hehe: That gives no explanation for the right knee though :hehe:

No hard and fast rules with this disease, just ask the docs who know about it, they never assume anything, all things are possible. Something which we as patients have worked out over time. My neuro is still bewildered when he does one of his tests on me, he keeps asking me if I am sure I am not right handed :lol: obviously whatever it is he's checking makes it look like I should be. He's been seeing me for over 4 years and still he asks :lol:

love
Lily
 

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Aha! The dreaded 'sausage fingers' as I think of them (I chose my username many years before I got Lupus- it's just a coincidence:rotfl: )
I get them a lot, mainly on the right side but a little on the left too (I'm right handed). That's how I ended up getting diagnosed (sort of), nothing showed up on x-ray or ultrasound so they did blood tests.
My other joints hurt on both sides, though I suspect falling downstairs just before christmas didn't help....
OP, good luck getting some help:) Hope you feel better soon.
 

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Discussion Starter #17
haha....Mavis, sausage fingers describes them very well!
My hands are always pretty much the same whether good or bad, though the right hand can be a bit worse (I'm right handed). It's incredibly interesting seeing your different experiences - I guess nothing is ever black and white, especially so with lupus by the looks of it!
 

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Hello
This a copy of your list of symptoms on the Introductions section. It is more useful here - gives a clearer picture. I'd say there's a lot suggestive not necessarily of lupus exactly but of a closely related connective tissue disease.

I'll comment further later

:)
Clare

I don't know which if any of my symptoms are lupus, hence my need to absorb more info here! But here are all the things I think could be relavent, apart from my hands none of which are bad right now but have been in the past and are always floating just under the surface if you know what I mean!

Joint pain - arthritic type pain in my fingers, worse in the mornings at the moment it's in my wrists too with constant aching. Hand pain started in my 20s. In my early teens my knees were as painful as toothache when I bent them, now they are just weak and hurt if I try to run. Had a hip pain for 6 months to a year for no aparant reason which went on its own. I used to get stabbing pains in my big toe.
Swelling - My fingers/hands swell up mainly in the morning, at their worse (for 5 years) they would swell so much in the morning that I couldn't dress myself as I couldn't move them. My extremities get easily hot or cold.
Rashes - I have a constant battle with patches of what I always thought was ezcema on my face. It can get very red, raw and itchy. It usually starts on the inside of the bridge of my nose and spreads into my eyebrows and under my eyes. My forhead is usually effected to above my nose and along my hairline. Hardly ever on my cheeks or chin.
I have tiny pin head sized blisters on my wrists and elbows. They are always there but sometimes they get really itchy and inflammed, like little scabs.
I suddenly got broken veins on my legs at 15 which have got worse over the years and I have them in lots of other places too now.
Digestive/illness probs - I suffered for many years on and off with gastric probs, pain and sickness and general unwellness often with bad bouts of gastric flu type symptoms.
Intolerances - I became intolerant of gluten for about 3 years and have to be careful that I eat healthily or that can set things off. I can't touch caffeine or I go potty and get ill!!! To many carbs will really effect my alertness.
Fatigue - This was a major problem for me from puberty onwards although that last few years have been sooooooo much better. As a teenager I had to sleep 14 hours a night. I can now manage with 9. I was always tired and dragged myself through the days. I did have anemia at one point for which I was treated but the tiredness never went away. Even now I wouldn't say I was normal. (I'm in my 40's now). All the usual tests showed nothing.
Wee probs - I have had urinary probs, again since puberty. It's a standing joke on how often I need the loo! All the simple urine tests I've had show protien and they always say I have a touch of cyctitis, but I have never had any pain. I have had many bouts of kidney infections too.
OMG this is turning into a book!!!! :blush: OK there's lots more but that will do for now :lol
Does it sound like lupus symptoms to you?
Do you guys ever share pics of symptoms? I have been looking at some but they look worse than mine. I wonder it they are worse case senarios? If they are the norm then I would think I'm a lucky freak or don't have lupus.
(Thanks for letting me ramble on, it does help :) )
 

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2cay2,

After my dx in 2004, I began educating myself about Lupus. I found that as far back as I can remember, I've had symptoms of Lupus even having sought medical treatment for them but no one ever put the picture together, including me.

I just sucked it up and kept going until I couldn't anymore. I submitted and scheduled an appointment with a rheumy I was taking my sister to, at the time, fully expecting that he was going to diagnose RA. My father had RA and I suspect my sister did also. But boy was I floored when he said the tests came back positive for Lupus. This had never crossed my mind.

I think we all have a tendency to try to "explain away" the things that are acute at any given time; but, I've learned now not to do that. Lupus is a fickle disease and not to be triffled with. Continue to seek answers and medical treatment.

Good luck.
 
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