[NickieSandra]

Hi all, first I just want to say thank you for letting me post my concerns here. Just recently I started to realize my symptoms all point to Lupus. My aunt was diagnosed roughly 5 years ago. Just about everyone in my family has some type of auto immune disease and this is really beginning to scare me.


Thinking back I have had symptoms on and off for about 2 years. They seem to be getting increasingly worse than ever since the beginning of the warmer weather. I have started losing a lot of hair near the front of my hairline around my face. It looks so thin and patchy. My hands and my feet have been so swollen and sore. My hips and knees and elbows on both sides of my body hurt so bad at times that I don't even want to get up which is impossible since I have 3 children. I get very frequent headaches and I also get ulcers in my mouth and have had them in my nose in the past.

I wake up regularly with such severe back pain that I cannot go back to sleep, and it will frequently last until the afternoon. I do find some relief with urination. I am not sure if it is my kidneys. I am not sure if this is relevent but I will go for a good month without having a solid bowel movment. I am exhausted no matter how much sleep I get.


It wasn't til this morning that i got truly terrified when I woke up and saw a butterfly shaped rash on my face when I looked in the mirror. Now I am so scared and upset.
My husband thinks I am crazy because something on me always hurts. So I have just stopped talking about it with anyone. I don't want anyone to think I am crazy or a hypochondriac. I am so scared and I dont know what steps to take next. Does anyone have any good advice for me?

Thank you so much
Nickie

 

[mary520]

Hi Nickie,
Sorry you are not feeling well. I hope you will see a doctor soon about your symptoms. You need to get to the bottom of whatever it is that is causing you to be so sick. Please don't be scared to go....if you have lupus or anything else, you need treatment to get well again.
Best wishes,
Mary

 

[Clare.T]

Welcome to the forum Nickie although I am sorry about why you have come.

Clearly you have been unwell for some time and some of the symptoms you mention could well be lupus related. You need to get an appointment with your GP, explain your fears ( " maybe lupus or some other autoimmune connective tissue disease "), and get a thorough check up, complete blood count, thyroid, diabetes, urine test and an ANA, which is the first screening test.
I suggest you read through the diagnosis and tests articles on the information section of the site and also the Criteria lists on the Not Yet Diagnosed section of the forum, to see what you can relate to.

I suggest you take photos of the rash because they have a habit of not being there when appointments come round.
Of course the idea of having any chronic disease is frightening but the best ways to deal with it is by taking positive action and informing oneself.
Family relatives with lupus aren't always affected in the same way and lupus can vary so much from person to person that it's almost as if they have different diseases.

Remember that those people who are leading problem free lives with their lupus well under control rarely post on forums !

The sooner the disease is diagnosed and treatment starts the better. Think of it hopefully as the beginning of better health and a better quality of life. When lupus is suspected the first referral is usually to a rheumatologist with further referral to specialists if needed. Lupus is very treatable these days
Don't listen to suggestions of hypochondria - people who are hypochondriacs never imagine that they might be - and don't let your concerns be dismissed.
I don't know if you have lupus or not but you do have genuine health concerns.
I always say don't worry until you know what you have to worry about. Keep cool and calm as possible, don't fear the worst because it usually never happens. Do for yourself what you would advise somebody else in a similar situation to do.

Let us know how we can help you further - there's a huge resource of information and understanding here and we'll help you all we can to get answers.

Keep in touch!

Clare

 

[cad]

Hi Nickie,
Welcome and so sorry you are feeling terrible.
I would totally agree with the great advice you have already been given and would add that; Its is understandable to feel totally terrified especially if you have been looking on the net about lupus and also have other families members with autoimmune problems.
However it is very important to go to your gp.
This will also help with your fear and anxiety, sometimes we can get so scared that we get stuck in one place and are scared to move forward but let me tell you taking some positives steps in the right direction will definately help you feel better. Even if your doc says that you are a prime candidate nd need to have further tests at least you are doing something and not just worrying and worrying and doing nothing. :hug:
Then as Claire said when you get the results back you can move onto the next step. Thats how we have to take things one step at a time.
The other thing is even without a diagnosis your doc can hopefully treat some of your symptoms and ease tings a little.
Atleast you have come here now aswell and get get some really great support from some great people who are all in the know.
My best wishes to you
Take Care
Good Luck

Cassie. :there:

 

[greenheart]

hi nicky, im not diagnosed with anything as yet but im having tests done at present, i have all your symptoms apart from the rash but have a red blush on my cheeks that feels as though its burning sometimes, anyway i like you sometimes feel scared as i have know idea what is going on with my body and i know auto- immune diseases are difficult to diagnose, there are alot of good people on this site who will be there for you and have aot of knowledge and comforting words for you, keep in touch anna x

 

[lazylegs]

Hi Nickie,

A good part of your back pain may be due to your bowel situation. I suggest you increase both your liquid intake and high fiber foods. Thyroid problems and other issues can sometimes cause the problem. Let the doctor know this symptom to make sure he tests for things that might be the cause.

I hope you find out what is going on quickly.

Take care,
Lazylegs

 

[LolaLola]

Nickie, I am sorry your Husband cannot really handle it. They can be so clumsy!
Mine is used to it all now, as I and my Daughter are both diagnosed. I can relate to a lot of your symptoms. Don't forget Fibro can also be present with lupus so it is a good thing to be examined by someone who knows about that too.

Many people here have had a long fight for diagnosis and help, but there are some good Consultants out there. You will notice if you look at many posts here that many people have needed to change GPs and/or Consultants to get good treatment.

I wish you Good Luck, let us know if we can help at all.
x Lola

 

[NickieSandra]

Thank you all so much for your kind words and support! I really needed to hear that I am not crazy. Thats the thing, I have my GP, but fortunately he is part of a very large practice so i think I may have to go to another branch in search for another doctor. I will see what tests they can run for me and see if they want me to see a specialist. Fortunately I live close to Boston so if something does come back on the tests I live in an area with the best doctors in the world. Thank you all again!! I wll definately keep you all posted!

Nickie

 

[LBH]

Hi

I was a hard to diagnose case and it took a very long time for me to get diagnosed. I would suggest seeing a Dermatologist and letting them get a point of view also, then you will have a Criteria already diagnosed. The more the doctors see the better off you will be! Me being a big dummy back then never heard of lupus and had no idea the symptoms were all coralated! Ohh yes! The constipation problems. If you can find fresh figs which is a fruit that is a wonderful natrual laxitive and helps alot. I eat them every summer! Hope you get better soon and wish you well.

 

[LolaLola]

Just keep hanging in there Nickie, we are all with you.
You will soon learn a lot.
x Lola

 

[halfpintfl]

Hi Nickie, and a very warm welcome to this site. I can't really add to the advise
except to say, start writing down things now, cuz, if I am right (?)several times during the day you will probably thing of something else to add to your list of
symptoms. Write down everything, and let the dr. sort it out. We are here to help you get thru this in any way. So keep posting and ask anything you need to. Don't
make the mistake of letting a question go unasked. Stress=pain, so try to calm your mind down, and be well.