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New, 2 family members with lupus and now maybe me? help

346 Views 4 Replies 4 Participants Last post by  Clare.T
Hi there my name is andrea and I am in need of opinions.

So I have been feeling like a hypocondriac (sp is off I am sure lol) for the past few months. I been going to doctor for so many things and keep getting the all clear.

Lets see constipation severely, blood in stool, pain where liver is when touched or if I move hard, a horrible rash on my foot for 2 yrs now and now I have the same kind on my neck and knees. The worst is the dizzyness and extreme fatigue. the most annoying is the recent itchy finger tips but there is no rash or bumps. Sometimes they tingle.

So the above symptoms got me a colonscopy, an endoscopy, and an ultrasound. I did have colon polyp but it was bening, thy did find I had an ulcer so thats the blood in stool. Ultrasound came back fine but I am still hurting all the time.

So my mom put it in my head that I have many symptoms like my grandma who is diagnosed with Lupus. The only symptoms I can think of is the mouth sores inside I always get and have since I was two and anxiety and maybe the rash. I dont think my chronic ithcy all over is anything to do with it or the being unable to sleep well at night.

I have a few pictures of my rash if anyone wants to give me their opinion. Ill link them. I know I sound scattered brain but after so many doc apps after years of not going and keep hearing oh your fine I start to feel like theres nothing wrong its pretend pain!:(

* I cant link them because I have to have 15 post =( but iff you put the http rule in front of
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Anyone? Just curious if any the above are symptoms for anyone. Ill even make a list.

1. extreme exhaustion to the point that at work i have snuck in the bathroom to close my eyes.

2. Rash on feet, knees and neck but they do itch.

3. Random pains in muscle/chest area.

4. Digestive track issue after issue.

5. Adhd/anxiety type issue.

6. Canker sores in mouth (but they are sore so I am thinking not related)

7. Insomnia or restelss toss and turn all night
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Hello and welcome :)

Some of your symptoms could be indicative of lupus or another autoimmune disease, then again they could be caused by a lot of things. Lupus is hugely complex and can mimic so many other diseases.

Do you know if your GP has run an ANA test in your bloodwork?
That would be the basic screening test that might give some indications of auto-immune activity. If that were highly positive it would then be followed up by other tests usually carried out by a rheumy as they are the specialists for lupus and similar auto-immune disorders.

It might be worth asking your GP if he/she thinks that seeing a rheumy would be worthwhile.

Rashes can be very varied too and it is very difficult for anyone to say much from a photo. Have you seen a dermatologist for the rashes? If not, that would be a good idea too.

In the meantime try looking up the diagnostic criteria in the "not yet diagnosed" section of this forum -

That might help you to piece together symptoms. We sometimes have very varied symptoms and, as you say, it's not easy to be clear on them as they are so varied. You'll see that quite a few of your symptoms do feature there but that some may be "missing".

Do you know what is causing your restlessness at night? Is it purely restlessness and non restorative sleep or is it due to pain?

I'm sure you're not a hypochondriac. You simply know that something is up and would like to get to the bottom of it. It is extremely frustrating being in that position, feeling so worn down and so bad and the docs keeping on telling you that you're fine. A lot of us have been there and can identify.

good luck with finding out what's wrong and keep us posted,

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It would be unusual to have lupus without sore joints (often even hot swollen joints).

But, it does not make it impossible, so if you are concerned that you may have lupus, mention to your doctor that you have a family history of it and ask if you should be screened for it. An ANA test is a good place to start - if positive it suggests that more testing would be wise.

best of luck with it all

Welcome to the forum morningwish
I'm sorry you have such poor health. With two family members with lupus it does seem sensible to start by investigating the possibility of autoimmune disease. (You mention only your grandfather).
Ask if any close blood relatives have or had any sort of chronic health problems.
It can be very hard to diagnose lupus because it can show up in many different ways and many symptoms resemble those of other diseases, and vice versa.
Ask your doctor for a complete blood count and an ANA test. Tell him you want to make sure there is no chronic disease causing all the symptoms over the years and about lupus being in the family. A CBC can throw up interesting signs such as anemia and low white blood cell count.

I am not sure that commenting on your symptoms is very useful. It's usually impossible to tell what exactly a rash is or even might be from a photo . Even a dermatologist might not be able to say by appearance alone without a biopsy. Lupus rashes do sometimes itch but those are not typical places for them Have you noticed any photosensitivity and mouth sores are sometimes, even usually,sore.
Read the Criteria lists 'stuck' at the top of this section and see if there is anything further you can relate to by personal experience on the lists.

I am sorry not to be more helpful, but with two family members with lupus the odds are 10 times greater that you do have it or something closely related.

Please let us know how you get on - we'll help you all we can to get some answers.

Bye for now :)
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