TheLupusSite.com banner

1 - 11 of 11 Posts

·
Registered
Joined
·
96 Posts
Discussion Starter #1
Hi everyone, i would really appreciate some help and advice. I recently had a baby and have had some health problems since this. Ive always suffered from stiff painful joints for a long time but had an attack of vacillitis (spots and stiffness on lower limbs) and ended up in hospital. I am now getting other symptoms including stiffness and pain mainly in legs, back pains, blue fingers and tiredness. I am very frightened as i have a 6 month old baby to look after and have read some horrible things about lupus. I would really like some sensible and well informed advice as i am very upset at the moment and feel that i wont see my son grow up!!!! many thanks annie
 

·
Registered
Joined
·
6,152 Posts
Hi Annie

Im sorry to hear you are feeling so unwell. It must be very hard especially having a little one to look after :hugbetter:

First of all can I say that it would be impossible for any of us to say if you have Lupus or not. Certainly some of your symptoms are similar to those of Lupus but then again they are also similar to many other conditions.

The very best advice I can give you is to make an appointment and see your doctor. Tell him/her about all the symptoms you are having (make sure to write them all down and keep an ongoing diary from now on) and suggest to him that you are worried there might be something autoimmune connecting all your symptoms. Docs dont like people to self diagnosis so I wouldnt use the word Lupus but suggesting that your symptoms might be connected is perfectly fine.

The blue fingers could be very suggestive of Raynauds Phenomenon which can go hand in hand with other autoimmune conditions. Do you notice that your fingers turn white before they turn blue and then turn red again? That would be a typical presentation of raynauds.

If your doctor agrees that there might be something autoimmune going on he should run an anti nuclear antibody test. This test, if positive in high titres, can be suggestive of an autoimmune problem and should get you a referral to a rheumatologist. Dont forget to also ask your doctor to run a B12 level test and to test your thyroid function as deficiencies in either can be responsible for a range of symptoms including the fatigue that you mentioned.

In any event please dont worry yourself unduly about the outcomes at this stage. Make a plan to get to the bottom of whats going on and be determined on a course of feeling well again. Even if it turns out to be Lupus the vast majority of people live relatively normal life spans with some lifestyle adjustments. What you might see here on the Forum tends to be people either trying to find out what is wrong with them, recently diagnosed or at the more sicker end of the scale. A lot of the stuff out there on the web is out of date. Stick around here and you will get up to date facts and information.

We will help all we can so feel free to ask any questions.

Take care for now
Joan:rose:
 

·
Registered
Joined
·
301 Posts
Hi Annie

Welcome to the site. I am so sorry you are feeling so unwell at the moment. Joan has given some wise advice and I cannot add much to it. Hope you can get an early appointment with your doctor and that you are soon on the way to getting the answers you need.
Thinking of you.

Love Judi xx
 

·
Registered
Joined
·
2,404 Posts
Dear Annie, Well, I lived to see my children grow up! Seriously, Lupus treatments are pretty good but it can be slowish to get the right mix of drugs. Please do not read things on the internet which are more than five years old at the most, as they are unnecessarily gloomy in the light of recent advances.

We are here and will do whatever we can to help.
x Lola
 

·
Registered
Joined
·
4,583 Posts
Dear Annie, I would like to give you a big hug right now, as I don't want you to be scared when right now we know nothing. Ask your dr. for a referral to see a Rheumatologist, then make the appt, then sit down and make a list of your symptoms. As you get closer to that date, we can help you. But, you will see your precious new baby grow up as the advances in medicine have come that far. be well.
 

·
Registered
Joined
·
19 Posts
:sad: Dear Annie
Sorry you are feeling so bad. I've watched both my sons grow up, marry and have children of their own. I still walk to work and back (even if it is a little stiffly) so even if you have got Lupus don't think that it's the end because it most definitely isn't. So lets have a smile :) :) or two and look forward to the years ahead .

Love Ann xx
 

·
Registered
Joined
·
96 Posts
Discussion Starter #7
me again!!

firstly id like to say thank you to everyone that has replied, and your words have made me feel a little positive but i am still scared and worried to what the outcome will be. Looking back i have always been tired and had stiff joints (since my 20's i am now 36yrs) i have a rare growth disorder which means i am very small and always put it down to that but given my recent symptoms, which also include feverishness, black bits in my nails, recent strep throat, rashes etc my gp suspects lupus. I suppose my main worry is how far has it spread and can it be treated??? I am seeing a rumatologist on monday for further investigation, i really appreciate all your views and support

many thanks annie xxx

ps could i ask how long any of you have lived with lupus, i guess it would give me hope if that is the diagnosis i receive!!!
 

·
Registered
Joined
·
580 Posts
hi annie ive had lupus for the past 20 years not everybody with lupus have the same outcome and like the others said you can live with this disease with proper medication i am prove of that i dont even get the fatigue and joint pain at all. so its not a death sentence.

as long as you stay on top of things with your doctors and take the right medication you should be just fine.

:) :) :)
 

·
Registered
Joined
·
19 Posts
Hi Annie
Its Ann again. I was officially diagnosed 12 years ago but I can remember having a blood test 32 years ago when I was pregnant with my first son and being told I had extra antibodies. So I've always wondered if i've had Lupus that long because back then Lupus was'nt heard of.
Love Ann xx
 

·
Registered
Joined
·
2,404 Posts
Hello Annie, been with Lupus just over 25 years. Now aged 50, and I think I'm wearing quite well. I do have a lot of symptoms but I have several other conditions as well.
My diagnosis was pretty complicated and very long winded which didn't help.
Now cheer up, resolve to have a good Consultation and we will be here for you.
x Lola
 

·
Registered
Joined
·
14,661 Posts
Hello Annie

You really must stop being scared stiff ! Many people these days live normal long lives. Lupus is so variable and effects people very differently & it can't be compared with AIDs or TB or cancer. And there is no way of telling if it will progress or how. This peri diagnosis certainly is a very difficult period but we can spend a lot of precious energy worrying about what very probably never happens. Getting an early diagnosis and the best treatment possible makes such a difference it's good that your GP has thought of the possibility because a competent caring GP is very important.
We live in the same neck of the woods - I am in Sutton- except you aren't in London. We have another member who lives in Guildford but I can't remember who it is. I seem to remember that she was getting very poor treatment from whoever she was seeing locally and eventually insisted on being referred on to St Thomas. I suggest anyway that you ask to be referred there first off because it is a world renowned lupus centre with internationally known lupus specialists who are very courteous and caring too, almost without exception. That could save a lot of time wasted.

Read the criteria lists at the top of Not Yet dDagnosed section to see what you can already relate to. That's the first stage in informing yourself of the disease. The forum is a vast source of useful information to guide you through and give experienced advice.
Now, lupus can indeed be a very serious disease but there is no reason to suppose at this point that you will be one of those most seriously affected. It can take a lot of adaptation to live well with it. Things might not be exactly as you want them to be but I am sure you will cope very well with understanding help available here. We'll help you all we can

Take heart !

Bye for now
Clare
 
1 - 11 of 11 Posts
Top