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sunny77
06-06-2011, 02:14 PM
Hi Eveyone,
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.
*Muscle Aches
*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!

Thank you

sunny

lizbond36
06-06-2011, 03:07 PM
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.
Hugs
Liz

giggle
06-06-2011, 03:07 PM
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 : )

giggle
06-06-2011, 03:14 PM
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
* Hypoparathyroidism

Symptoms

* Constipation
* Difficulty concentrating or thinking
* Dry skin
* Enlarged neck or presence of goiter
* Fatigue
* 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

sunny77
06-06-2011, 03:52 PM
Hi,
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.

Take Care

Sunny x




It's like a process of illimination, but I don't feel the doctors take me seriously an

tgal
06-06-2011, 05:05 PM
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!

steve.b
06-06-2011, 09:18 PM
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.

giggle
06-07-2011, 01:18 AM
Hi Sunny!

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 : )

SandyR
06-07-2011, 06:53 AM
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.

You can find that list Steve referred to here (http://forum.wehavelupus.com/showthread.php?9604-List-of-63-Auto-Immune-Disorders).

Peridot20_Gem
06-07-2011, 07:26 AM
Hi Sunny,

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.

Terri xxx

sunny77
06-07-2011, 07:31 AM
Hi,
Thanks for offering me all this great information, it really helps when you're going through a process of elimination!!

I spoke to the doctor today, but she only had '10 mins appointment', so I had to make a choice of what to discuss....so I decided to sort out the hair loss and re-book for the female stuff!!! The doctor told me that I've got alopecia areata, so I basically had another full blood count to check for thyroid, diabetes etc. I'm going to book an appointment next week to try and sort out the left groin/genital tenderness, as it's pretty much there all the time, although she did say some of the symptom I mentioned were quite general.

To be honest I think alot of the stress is from having to go to the doctors/clinic so much with these worries whilst feeling like no-one takes you seriously and just feeling frustrated and kinda let down in a sense. It's embarassing, as I've hardly ever go to the doctors, but I know my body and feel that it is definitely fighting something!!!

I've had numerous gp's, nurses and sexual health clinic look at those cuts/tears and they don't seem to have any ideas;although I did get the area of the cut swabbed for yeast, bacterial and herpes which all came back negative. I originally thought they were open cuts but apparently they healed and left scars which is odd as they've never itched or been particularly sore.

I did have a staph infection on my right groin which flared up, so maybe it's affected my system in some way as I've had this staph on and off for a few years and it wasn't until around 10 months ago that I used a steriod cream that finally cleared it up!!

Anyway, I looked into lupus a little and it appears that it effects lots of different systems in the body and can cause skin problems, muscle aches, fatigue, weight loss/gain, protein in the urine, and hair loss. I'm wondering what other prominent symptoms individuals experience? I'm guessing it can take quite a while to get a proper diagnosis as I'm assuming the GP's try to eliminate other factors first.

Thanks so much for all the suggestions and advice, it really is helpful. I'll certainly be looking into other ways of describing cuts/tears etc and be aware of how I describe my symptoms to doctors .

Have a great day,
sunny x

giggle
06-07-2011, 03:23 PM
Hi Sunny!

Last night I meant to put a much longer post through but my partner was eager to play a computer game with me and pressured me to rush LOL

My point about looking outside the box was that the symptoms you are probably noticing most, dont classically fit in with lupus diagnosis, not that they arent a part of lupus, but having them alone might point in a different direction.
Lupus is something to consider after everything else is ruled out : )

BUT... there are a lot of lupus symptoms that do point to lupus that you might not realise or might over look. So give it a lot of thought... if it doesnt seem like much of a problem so you often leave it out when dealing with doctors, think twice, and make a list including even trivial things.
I have had sinusitis for forever... and until recently I didnt know it had anything to do with lupus. So I never said a word. Another thing was spark like feelings in my head, I tried to talk to one doctor once about it and he ignored me so I never mentioned it again. But it would be helpful now for doctors to know, especially seeing as I am experiencing tremor.

Im probably most worried about your groin tenderness but thats probably just because I had an undiagnosed tumour once that almost killed me... had the doctors actually looked into it when I complained of symptoms instead of palming me off as over sensitive then something could have been done early.

Also... just a thought here... but could your groin tenderness actually be your bowels? I have had a lot of very low abdominal pain that was worse when I had a full bladder... but it wasnt my bladder. It was bowel inflammation, but when my bladder was full it pressed on the inflammation and was painful. I am having a celiac screen, perhaps you should get one too. The bowel inflammation causes a heck of a lot of symptoms that really seem like genital symptoms... including urethra pain caused by the bowel inflammation pushing on it and causing a minor prolapse. I get sometimes very sharp pains very low down, it feels like almost at my hip joint. It takes a while after urination for the pain to subside, sometimes immediately after it hurts even more!

Peridot20_Gem
06-07-2011, 04:15 PM
Hello Sunny,

I had bald patches on my head like 50p's and was never told what they was cut my hair short to get it to grow back properly, then finding i had Lupus and then joining the site found out what mine was linked to.
I'm pleased your thyroids been tested because that's what can make you gain weight or lose weight according to if you have one overactive or underactive.
I know it's abit hard and you don't like seeing who you've got to put there comes a time in our lives when help is needed and your not on your on there plus it's best to get it sorted but if you do have Lupus or any autoimmune disease, stress and depression it thrieves on and can make symptoms show more than what they actually are.
Any skin trouble refering anything linked with Lupus you can beat steriod based creams they're excellent for removing things quickly.

I know you've got your GP helping but to be sent to a dermo and rheumo would help alot more refering the fields of bloods being taken, unless you do have a good Doctor who goes out there way but i will point one thing out and i do this alot Lupus itself fluctuates the bloods so if you do have any took always remember that if some come back negative they could positive because it can be quite a while for some things to show it's true colours in your blood.

Everything i have showed in one go but with loads of bloods took but it took 6mths for the anaemai to show low and now i take Folic acid tablets and B12 Jabs for life.

Terri xxx

sunny77
06-08-2011, 05:23 AM
Hello again,

I logged on and was quite overwhelmed by the advice and support that you've offered and I really do appreciate it!! I was so tempted just to give up on the doctors and basically try and heal myself through natural supplements, diet and holistic means; but I realise that I should really pursue this.

Hey Giggle, I'm sorry to hear about your tumour but so glad they finally diagnosed it; this just goes to show that when you have a feeling that something is not right with your body you should assert yourself with GP's. Anyway, I hope you're doing okay now?

It's funny that you should mention that the symptoms could be connected to the bowel area as I have a few things happening within the urinary area. The day after all this started 10 months ago I had constant pressure to the stomach for 1.5 days, although this has never happened since and my pelvis was checked the day after and nothing abnormal was found.

However, I have had increased urination and on at least 3 occasions I've had a weird fullness/bloaty type pressure that's been slightly uncomfortable along with urinating even more. I never have any actual pain or discomfort when urinating, but It did feel like it could be a water infection; despite this my water results came back clear.

Actually, all your comments and suggestions have forced me to look at things from a different perspective and stop focusing on sti's as I might be missing out on something really important. The risk was through oral sex which I'm told is relatively low, but for some reason I got fixated on the fact that it was herpes hsv1 but in the genital area as opposed to the oral location .

However, I received a negative swab FOR H and considering how my immune system has been acting as of late, surely I would have seen blisters; plus the fact that I've never actually had an outbreak which makes me think this could have merley been a coincidence with the paper cut/fissure appearing. Plus all my tests came back clean and I really need to try and explore other possibilites, but I guess it's the one sided groin/genital tenderness that's been worrying me the most to be honest.

It's been pretty much been constant at various levels in the last ten months and appears to be worse after mensturation for some reason. I'm wondering if there is anyway the doctors can look into the lymph system/ area more closely other than just feeling it for any tenderness.

Hi Peridot20-Gem, Sorry to hear about your hair too, it's quite distressing when you first see the patch and I don't know about you, but I was amazed that I hadn't spotted it earlier. I think you're right about the stress as I'm studying at the moment and that's been pretty constant for the last few years and usually I'm such a postive, upbeat person but these health worries have knocked me for six. I think I'll wait for the blood test results, then make an appointment for the women's stuff to be checked out and then make suggestions of referals to specific areas like you've suggested.

Funnily enough, the only real problem health wise I had previously was this on and off staph infection that I had on the right groin in which none of the creams or antibodics had worked yet the doctors never bothered to refer me to a dermatologist. Thankfully, the practitioner at the clinic was a skin specialist too, so I was prescribed a steriod cream which cleared it up pretty much straight away and touch wood it's never returned!!!

Sorry for the long post again!! Hope you're all enjoying the sunnyx

Peridot20_Gem
06-09-2011, 02:52 AM
Hello Sunny,

After finding those bald patches after skinning my head, i've let my hair grow back but the hair loss still comes out and christ if i have a shower the plus hole is well filled.lol
You studying which needs firm concentration and then all this as caused pressure and worrying and this disease loves all that and if depression kicks in can make the symptoms worse.

I am pleased the dermo gave you some steriod cream and it's removed it for you, steriod based creams are great but concerning the face more they can age you my dermo said so he started giving me 6mths break in between, i used to say to him i ah worried about looking old it's my skin i want clearing up but he's such a good dermo i can never knock him on anything.

Have a nice day and i hope your less pain free.

Terri xxx

sunny77
06-12-2011, 11:13 AM
Hi,
Yeah, I think I might have heard that's it's good to have a break with steriod creams as they can sometimes thin the skin. Good news that you've found a great dermotologist as it really helps if you feel like someone listen's and has your best interests at heart. I'm glad your hair is growing back and I know what you mean about the hair in the plug hole as I've experienced the same; although odly I've not noticed much on the pillow or really in the brush!! I think you're right that stress definitely plays a factor, as this is the most stressed I've ever been in my whole life,lol!!!

Anyway, hope you had a lovely weekend :)
Sunny x

Peridot20_Gem
06-12-2011, 01:16 PM
Hi Sunny,

Yes they thin your skin, i've had to stop using them now because my skins gone to far for steriod based creams but as long as you have a 6mths break in between it's not so bad, that's what my Dermo used to do with me.
I could sit on my hair before a bald patch appeared around my right ear and it sent me abit paranoid chopped the lot off and found a 50p patch ontop of my head, it's grown back to the bob and i've always had thick hair and it's a good job with how much come out when i brush it or wash it.
Well i'm stressed daily and after so much talk with my hubby i lose the plot and i'm for ever saying sorry, that will be put on my gravestone in capital letters.

I hope your days better tomorrow mate. xxx