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Discussion Starter · #1 ·
Hello,

I'm a 42 year old woman just looking for clues and for someone to tell me I'm not losing it. I may be way off the mark here but I came across this site a while ago while searching the internet in my attempt to make sense of all my illnesses. Each time I search yet another virus/pain/problem, the word lupus often appears. I go to my doctors usually to be told I'm run down, I'm depressed, my blood tests are generally fine so nothing to worry about. But this year alone I've had tonsillitis 4 times, 3 UTIs, thrush a fair few times, labyrinthitis, a flu-like illness (which I'm still recovering from), a HPV flare up and on top of that I have, and have had for ages, constantly buzzing ears, painful knees, small dry sore patches of skin with a large patch of something bumpy, flakey and scabby on the back of my head (yuk). I also have a platelet function disorder which was discovered because I bruise easily and had very heavy periods, I ended up having a hysterectomy because nothing else worked. If I go further back than this year I've also had things such as shingles, pleurisy, scarlet fever (!), glandular fever and a large variety of viral illnesses with no name. I have restless leg syndrome and I quite regularly get really bad shoulder pain in my left shoulder that lasts for weeks and hurts to breathe even. I do take antidepressants because I do get depression but surely all of my illnesses can't be because I'm run down and depressed.I also worry that my employers will eventually lose patience with me.

After reading people's experiences on here I understand that what I'm suffering isn't half as bad as what others live with, however does any of this sound familiar? Is it possible that all of my illnesses could be related and due to a condition such as lupus? I'm quite nervous of going to my doctor and saying that I've trying to self diagnose on the internet because I know that's not a good thing to do, but I just want to know that I'm not a hypochondriac or that I'm not going mad.

Thanks for reading,

Ani
 

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Hello Ani and welcome.

NO, your not a hypochondriac and your not loosing it either. I am a firm believer that YOU know your body best and if your sick then your sick. Ok, with that said I am wondering if you have been to a Rheumatolgist or even your GP and had any blood work done? Are you on any medicine to help with all of the issues your dealing with?

It does sound like something auto immune is going on but you must see a doctor. I am just not sure if you have been to one yet???

I am glad you found us here.;);)
 

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Discussion Starter · #4 ·
Hi Karol,

Thank you for such a quick response. The only blood tests I've had done recently are things to check sugar levels and blood count, just the general tests. Although in my search for an answer I got tested for various things including HIV and syphilis at a GUM clinic! With my general tests I've had to have some repeated which came back fine, and I still need to get another one done because of something to do with my white blood cells showing an infection maybe, but since I've always got some kind of infection or something its hardly surprising. To be honest I don't fully understand, I need to ask more questions at the surgery but I'm always so dizzy and feeling a bit spaced out that I forget and everything is always such at rush at the surgery. I've not seen anyone other than my gp. The medicines I take are antidepressants and HRT.

Ani
 

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Good Morning Ani,

OK, I think you really need to chat with your GP about a referral to a Rheumatologist. Are you in the USA? There are certain blood tests done to look at auto immune disease and you have not had any so maybe this is a good place to start. I am surprised that your GP has not already suggested doing a round of these bloods on you? The dizziness you get may warrant a Neurologist and the skin rash that you experience is suited best for a Dermatolgist.;););)

I would advise you to keep a journel of your symptoms and take pictures of any rashes you get or random swelling that you get too. This is always helpful when you go to a doctor. If your anything like me by the time you get to the doctor things look normal and so the pictures are a really good idea.

Does anyone in your family have any auto immune diseases? It does not play a big role yet it is important just the same. I am the only one in my family with ill health, go figure???:mad:

There is a awesome book that you can purchase written by Dr. Daniel Wallace and it is called "The Lupus Book". It is written in lay man terms so it is easy to understand and a must have for anyone who wants to understand Lupus better. He is a world renowned Lupologist and his style of writing is super easy reading.

I do wish you luck moving ahead and push on until you get answers. Write things down so you do not forget and this makes future doctor appointments go much more smoothly. Remember that many of us have gone a long time before getting a diagnosis or a correct diagnosis. Be patient but persistant in finding out what is going on and do not allow anyone to dismiss you.:wink2:

Join us in the chat room sometime and sure hope to get to know you better.
 

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Hello Ani,

I can't say what might be going on with you but it would certainly be good to rule out or in the possibility of an auto-immune disease. Many of here went through the "you're depressed, overworked, stressed..." rounds for years but knew deep down that there was very definitely something else going on. As Karol says, you know your body and you need to listen to it.

Obviously, going to the docs and saying "I think I have lupus" is not a good idea. However, you could perhaps say to your GP "Do you think that it might be something auto-immune related?" You would know best whether your GP would listen if you said that.

A referral to a dermatologist and/or rheumatologist would be a good idea (depending on which symptoms are most significant). Keeping a symptoms diary as well as photographing any rashes, significant swelling and so on that you might have can help the doc if you don't have those symptoms at the time of the appointment.

If you follow the link below you'll see a list of the ACR classification criteria for lupus. It might help you to see if there are things there that fit and you hadn't thought of.

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

Auto-immune diseases are very complex and many have symptoms that overlap or that imitate those found in other diseases. Things like your thyroid should be checked and also tests for lyme disease and so on.

The first blood test which might give some indication of what's going on is the ANA test which is basically like an auto-immune screening test and then other more specific tests which can help determine which auto-immune disease (usually requested by a specialist once you've got a referral).

I hope that helps a bit, bye for now,

Katharine
 

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Discussion Starter · #7 ·
Hello,

Thank you so much for your replies and advice. I read this yesterday and decided straight away to start writing things down. After looking at the criteria it reminded why I so often come across lupus, I also have really cold fingers and toes most of the time, and my hair is thinning faster than I feel comfortable with. I don't tend to get swellings but I do have aches, like flu aches. I'm extremely tired and quite often (as in most days) feel as if I've been on the booze, even though I haven't. Also a few years ago one of my usual UTIs landed me in hospital with a horrible kidney infection, pylon something. Luckily I haven't had this since. I am due to have a general blood test repeated tomorrow (Katherine I've had my thyroid tested and that is fine) so I will have a chat to the nurse, but I'll also book in to see the doc again. I think I'm quite nervous at the docs because I've taken lists and things with me before to try to get to the bottom of things, but the doc's reaction has always left me feeling a bit stupid. Anyway, I understand that my problems may be nothing at all to do with lupus or any other autoimmune condition and like the doctor says maybe I'm run down all the time and 'just unlucky', but it would really help to know. If I am 'just unlucky' then I hope you don't mind me gatecrashing this site, it helps to get things off my chest a little.

By the way Karol, I'm in the UK.

Take care,
Ani
 

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Hi Ani,
I find it interesting that you are also diagnosed with the platelet function abnormality. I have always had clotting problems, and was dx by a hematologist with this several years back. It is unknown if this is a part of lupus, or a separate issue. Not many of us with this.....most of the people have the reverse problem.

In trying to get diagnosed, we can't stress enough how important it can be to keep a symptom journal. If you are running a fever, write it down, and also note when it came down. Also make note if you "drop" a fever, where your temp goes down below normal....in the 95 or 96's. I would do that regularly when I was in the diagnosis stage. Instead of running a fever, I would go down to 95.3 for a few hours, then go back up to normal. Anything which deviates from the normal is what you need to put down. As you were earlier recommended, take pics of rashes. Truly, a picture is worth a thousand words.

I think it is worthwhile to see if you can get The Lupus Book at your library. Some parts may be a bit in depth, but overall it has some important basic information.

Take care,
Sally
 

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Hi Ani and welcome to the site. You do seem to have suffered, maybe you could ask to be referred to an immunologist as you have so many infections to see if you have a defiency in your immune system? Don't think you are a hypochondriac or let anyone tell you it is in your head. You know something is wrong, keep pushing for answers.

The others have given excellent advice re a diary and photos of rashes etc. Let us know how you get on.

Take care

Deb
 

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Discussion Starter · #11 ·
Thank you x

Hello,
I posted a while ago because I was getting really frustrated with my illnesses and somehow ended up at this site. Posting here and getting such wonderful replies, and feeling like I was being believed gave me the courage to stand my ground with my gp to seek answers for my problems. My gp very begrudgingly referred me to see an infectious diseases consultant but while waiting for my appointment I got quite ill with quinsy throat and developed more joint pains. My gp actually sat up and took notice then and sent me to ear, nose and throat too. I've had auto immune stuff tested which has come back okay, but it appears that I have a deep rooted streptococcal infection that I have probably had for years, which explains a lot of my previous illnesses. I'm now on long term antibiotics and waiting to have my tonsils whipped out (scary but at least the bad throat might help me lose a bit of weight, there's always a bright side to these things). I might have other stuff too but they want to deal with things one step at a time, on the other hand all of my problems might be down to this one condition, in which case in a few months I should be jumping around like a teenager, or maybe not if its anything like my teenage daughter. I don't know what its like to feel well so that's something to look forward to.

I did gatecrash this site a bit as there have been no suggestions of a lupus type condition, but I'm glad I did because it gave me that boost so I really am thankful to everyone.

All the best and take care

Ani
 
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