Could I have lupus?
Firstly sorry for the long post!!!
I'm 32 years old and normally considered myself to be really well and healthy, however in the last 10 months I feel like something may have comprimised my immune system. I initially thought it was an sti from oral sex, but all tests have come back negative and I feel like the doctors think I'm just a worrier but I know deep down something isn't right.
At the weekend I also found a bald patch at the back of my head which was larger than a 50p peice and quite distressing, plus a small rash near shoulder that appearance almost looks like a love bite...... so I'm going back to the doctors tomorrow. Other symptoms include:
*Pingueecula appeared on the sclera of eyes about 9 months ago
* mouth ulcers a few times/ bleedy front gum
*Roughly every 6 weeks or so unexplained bruisers on legs that take ages to heal,
* Spoty rash between chest that appears to flare up at certain times during the month
*weird leg sensations (only happened once at the start of all this)
*groin/gender tenderness in left side most of the time but particularly after my period
*Tender areas on left leg when touched at times
*strange looking psoriasis type looking spot on my leg/weird boil looking spot at small of back.
*Paper cut on labia which scarred, yet no itching but purple sligtly discloured area on outside of labia (all these been swabbed for herpes/yeast and all negative)
* Increased urination and on a couple of occasions water retention that was uncomfortable, but did not sting or hurt when I went.
*I may also have gained a little weight
* fatigue and extreme tiredness.
*Also not recently but a few times when I've been walking I've felt like my legs might give way.
This has been the most stressful ten months of my life, and I've never experienced anything like this before in my life.
I had a blood count done a few months ago and my liver checked which all came back normal, but the hair loss has really worried me.
Any ideas would be appreciated!
Welcome to the group, I am also 32 years old. However I never once thought I had Lupus fast forward 7 years I was Dx may 2 2011. There is a few thing you listed that I also have. However I am not a doctor and go see a Rhumy and ask for this test to be done. Remember not all test are 100%, I had a AVA, DNA and few other test done. Can't remember but I think two or three come back Postive for Lupus and my doc run those test twice. So its always best to keep searching for answer.
Have you have the full STD blood work up?
You haven't listed here any of the classical signs of lupus, or those used for diagnosis. A lot of your symptoms are very general everyday symptoms that may be a sign of virus or other health issues. As for your tenderness after period, you should get this checked out via ultrasound as soon as you possibly can. Generally such things are an indicator of endometriosis or other sometimes very serious female problems, but not a sign of lupus.
Cuts and things often do turn purple when they scar, this is a common everyday thing, especially when located in areas that dont see the sun.
Get your rashes and spots checked out by a dermatologist. Many people with lupus also have psoriasis but many people without lupus also have psoriasis, its not an indicator of lupus but should be checked. There are many steroid creams that can definitely help you out in this area.
Honestly to me it sounds like you've got a couple of separate things going on there that need attention. But I wouldn't be pushing for lupus, you are just going to get the doctors on the wrong side straight up. If you are serious about getting the correct diagnosis, you need to start from the ground up and get your female issues looked into asap. Treat all your symptoms as separate issues and through the process of elimination you will come closer to a diagnosis. Dont rush the diagnosis or you may end up incorrectly diagnosed. I know it seems like a long wait to start feeling better, but patience will pay off.
Many of the reproductive related issues can also cause terrible fatigue and even muscle pains. You might want to look into fibromyalgia as well.
Also do a search into the affects of candida : ) You may find some answers there as well. Even though it doesnt sound lupus like, I am sure others will agree you are welcome here anytime for a rant or for support for your diagnosis. Hope you get some relief soon : )
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oh... I forgot... also look into hypothyroidism or hashimotos. It is associated with female problems, aches and pains, fatigue and weight gain... I also have hashimoto's
Chronic thyroiditis (Hashimoto’s disease)
Hashimoto's thyroiditis; Chronic lymphocytic thyroiditis; Autoimmune thyroiditis
Last reviewed: April 19, 2010.
Chronic thyroiditis is swelling (inflammation) of the thyroid gland that often results in reduced thyroid function (hypothyroidism).
Causes, incidence, and risk factors
Chronic thyroiditis or Hashimoto's disease is a common thyroid gland disorder. It can occur at any age, but is most often seen in middle-aged women. It is caused by a reaction of the immune system against the thyroid gland.
The disease begins slowly. It may take months or even years for the condition to be detected. Chronic thyroiditis is most common in women and people with a family history of thyroid disease. It affects between 0.1% and 5% of all adults in Western countries.
Hashimoto's disease may, in rare cases, be associated with other endocrine disorders caused by the immune system. Hashimoto's disease can occur with adrenal insufficiency and type 1 diabetes. In these cases, the condition is called type 2 polyglandular autoimmune syndrome (PGA II).
Less commonly, Hashimoto's disease occurs as part of a condition called type 1 polyglandular autoimmune syndrome (PGA I), along with:
* Adrenal insufficiency
* Fungal infections of the mouth and nails
* Difficulty concentrating or thinking
* Dry skin
* Enlarged neck or presence of goiter
* Hair loss
* Heavy and irregular periods
* Intolerance to cold
* Mild weight gain
* Small or shrunken thyroid gland (late in the disease)
Other symptoms that can occur with this disease:
* Joint stiffness
* Weight gain (unintentional)
* Swelling of the face
Note: There may be no symptoms.
Signs and tests
Laboratory tests to determine thyroid function include:
* Free T4 test (low)
* Serum TSH (high)
* T3 (low or normal)
* Thyroid autoantibodies:
o Antithyroid peroxidase antibody
o Antithyroglobulin antibody
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Thanks very much for taking the time to reply to my post. It's just been so frustrating, as I've had numerous doctors/sexual health clinics check my genital area and can't explain the paper cuts. I had all blood work done for std apart from herpes as I thought there was a chance I might have contracted genital hsv from an oral cold sore but doctors keep saying it's not herpes. I've not actually had sex for years either,lol
Around the same time, I also went through a few antibiodics as I had a staph infection in my right groin area which I've had on and off for a few years. I finally found a steriod cream that worked and I've had no problems since, and I've never had any blisters in the genital area just a paper cut thats healed then left a scar. I guess the antibioducs might have caused some kind of system disease as I took oral antibiodics for the first time since I was a child.
I know stress can do strange things with your body, but I feel it's more than that.....alot of my systems seem like my immune system has been comprimised in someway. I won't necessary mention lupus, but just try to list all symptoms and things to check, e.g. hormone levels, thyrod, autoimmune disorders and yeast again maybe.
I think finding my big bald patch amongst my long hair was the finally straw for me!! At least if I know what I'm dealing with I can try and make things better. It's the limbo that I find really difficult to deal with
Anyway, I hope you guys are doing okay with the lupus symptoms and managing well.
It's like a process of illimination, but I don't feel the doctors take me seriously an
Hi there! No matter what it is you MUST be your own advocate. Do NOT let them brush you off. Keep the best records you can. Make them listen. If they don't listen find another one! Sometimes with any AI issue (not saying it is one but some need to be looked into) the blood work doesn't always show as they expect. Keep a list of all symptoms and take it to every doctor. A one page summery of everything since you began feeling ill helps. Don't give it to the nurse it will just be pushed in the file. Hand it to the doctor when he/she comes in.
Let us know how it goes and I hope you get to feeling better!
Success is not final, failure is not fatal: it is the courage to continue that counts.
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there is 63 different types of auto immune disorders.
many of there symptoms overlap.
it is not always easy to diagnose most of these disorders.
yes it does sound like something is not right.
as mari has said, document everything. take a brief summary with you to your doctors appointments.
i hope you find the cause.
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Sometimes we all need to think a little bit outside the box : )
Maybe you are looking at your symptoms or describing them the wrong way. Your papercuts, are they actually papercuts? Or are they cuts/abrasions that appeared with no explaination and you attempt to describe them by saying they are papercuts?
I do know that injuries and sores in the female genetalia area can feel just like papercuts. If they are very clean cuts that appear just like papercuts... well that is strange. If they arent neat, they may be tears.
Otherwise, if they just feel like papercuts but dont have the appearence of either a papercut or a tear, they may well be ingrown hairs, pimples or may even be from a rash. It might even be worth your time mentioning/showing these to a dermatologist.
I did some research for you... and found that many other women suffer from 'papercuts' as well. It is apparently a hormone imbalance but very few doctors know about it as a symptom... or perhaps care about it as a symptom.
I think going straight to an experienced dermatologist sounds like a good idea. They are also often involved in the diagnosis of lupus and other autoimmune issues. It doesnt take much to run the tests, but a positive ANA etc will only tell you you have one of the many possible autoimmune diseases.
Good luck : )
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Welcome to WHL and it's lovely to have you with us.
By what you've written and by side affects which i've read you need your thyroid glands checking and also for anaemia and full works by a good rheumo to check your blood system.
Definitely get your thyroid glands done.