Blood clots and lupus a possibility

[Sherrym24]

I just turned 25 years old and let me tell you I feel way older than that. I just gave birth to my third child. I got several be extensive and sever blood clots. My iliac and femoral was completely clotted (no blood flow at all) from groin to ankle. It's now been 10 months on blood thinners and I still have some clotting but it's stabilised. I have always felt extremely busy exhausted even when I was a teenager. I never have energy and every task seems like a struggle. My grandmother would always get mad and yell and say how does someone your age not have any energy. They would call me lazy and such but no matter how hard I forced my self it is so difficult I never have energy. Im always fatigued and sore. My whole body aches. I've gotten these weird rashes on my knuckles and elbows and after a few weeks they go away and come back later. I had my Ana tested once and it was positive but my doctor said that doesn't mean anything and that I'd need a second positive to confirm anything. I just got blood work again a few weeks ago and my appointment is Thursday to discuss the results . I was going to be able to stop blood thinners if it's negative but seeing as how I still have my appointment it makes me wonder. Also I get dry scaly skin on knees and elbows. I have always had a reddish color around my nose not to bad but it's there. What do u think could I have it? Oh also I have reoccurring UTIs but the thing is there's never bacteria. The doctor always calls and says u don't need the antibiotics there's no bacteria growth. But there is white blood cells. And white blood cells in urine are from inflammation. Bright lights in stores like Walmart make me feel kind of confused or weird it hurts my head. So does sunlight.

[Chanpreet_Walia LUPUS UK]

Hi Sherrym24,

An ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. Further testing would be required to accurately identify the cause of your symptoms. We published a factsheet called ‘LUPUS: The symptoms and Diagnosis’ which you can read here: lupusuk.org.uk/wp-content/u... .

Around 90% of people with lupus report experience fatigue, making it one of the most common symptoms of lupus. We published an article on our blog about managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

Although you haven’t had a diagnosis for lupus, 90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information - lupusuk.org.uk/pain-managem...

Skin involvement is common in lupus, with 60-70% of people with lupus reporting some skin problem. Rashes can be induced by sunlight as well as other factors which are discussed in our guide called ‘Lupus and the Skin; lupusuk.org.uk/wp-content/u...

We published a blog article on ‘coping with light sensitivity’ - lupusuk.org.uk/coping-with-...

Please let us know how you get on, wishing you all the best.

[Sherrym24 in reply to Chanpreet_Walia]

Thanks so much for your reply. I read all if the attachments and they were quite helpful.

[Sherrym24]

Also I get little bumps on my shoulders and chest after being outside. My hair is falling out like crazy right now. There will be hair all over my clothes. If I run my hand through my hair several hairs come out each time. My neck is always sore. I have swollen glands right now and mouth sores. The rashes on elbows are scaly and itchy. I get blister like rashes on my hands. These come and go.

[Chanpreet_Walia LUPUS UK in reply to Sherrym24]

Hi Sherrym24,

Have you thought about getting a referral to see a dermatologist?

I would suggest discussing your symptoms with the doctor at your upcoming appointment. You can make notes of your symptoms as well as take in photographs of your skin to show the doctor - lupusuk.org.uk/getting-the-... .

Last year we published a blog article on ‘Coping with Hair Loss’ which you can read here: lupusuk.org.uk/coping-with-...

Oral (mouth) and nasal (nose) ulcers are one of the most common features of lupus occurring in around 45% of people who have SLE. We published an article on our blog about coping with oral & nasal uclers which you can read here: lupusuk.org.uk/coping-with-...

[JazPont]

Hi Sherrym24

I'm also in the process of diagnosis.. have your heard of Hughes Syndrome ? Or "sticky blood" syndrome.. it's an autoimmune disease that's either primary or secondary to Lupus! It causes blood clots etc. I had my first onset of symptoms only 4 weeks ago, in those 4 weeks I've lost all of my hair 60% of my vision (blood clot in my eye vessles) severe case of perminent Livedo reticularis and Raynauds, and also Scleroderma. I also have the dry skin on elbows, knees and ankles from the scleroderma.. I've also lost a stone in weight in those 4 weeks. All of my bloods had to be sent off to a special lab because of so many over lapping symptoms. Also 4 weeks ago had my first set of blood tests.. All come back fine my ANA was negative and all organ function was spot on. Had my bloods taken again 3 weeks later and my ANA was through the roof and so were my liver function tests - AST & ALT indicating liver damage. All just in 3 weeks.. from my first onset just 4 weeks ago mine come on so rapidly and aggressivaly!! I had absolutely no symptoms prior to this !! I've just turned 26.. I was lucky because I ended up in A&E because of it and there was an on call Rheumatologist who came to see me, and although all my blood results come back negative because of my symptoms they saw me in clinic 3 weeks later - luckily !!! I'm still undergoing lots of tests atm but I'm in the right care! Ask your doctor to refur you to a rheumatologist. Or go private, it's about £150 but it's worth it youl be seen within a week. Good luck xx

[Sherrym24 in reply to JazPont]

My goodness that's a lot to go through. Im so sorry all of that is happening. Prayers for you and they get you on the right treatment. I see my hematologist in two days and she will have my blood test results. When I was hospitalized they referred me to a rheumatologist but he didn't take my insurance.

[Leave-me-alone]

Just made me laugh a little. I have the same photo as you

I also started with grion pain (to a point where I couldn't walk for a week). 3 Months later on the same leg my craf was in pain for 1 month, and then my ankle and feet. Then found out I had DVT above the knee. Was suppose to be on Apixaban for 6 months, but my super Rhemy wanted to check if I will be safe to come off Apixaban as planned during my review. Luck she checked apart from SLE. I also have Lupus Anticoagulant. Is just coming to 6 months since I started on Apixaban I am glad I am staying on it because I still have those feeling of when a colt is coming. I was in so much pain with my clot never want to experience it again. Rather have water thin blood

[Sherrym24 in reply to Leave-me-alone]

I agree the blood clots are incredibly painful. I couldn't walk for two weeks. Doctor's wanted to do an emergency surgery because the vein was fully clotted absolutely no blood flow. But I was pregnant so they couldnt. My son is three months now and my clots are finally stabilising they say. I also tested positive for lupus anticoagulant. Glad u are staying safe and sticking with blood thinners. I am nervous to come off of them if that's my doctor's choice as well

[Leave-me-alone in reply to Sherrym24]

Glad all went well for you too. All the best xx