LUPUS UK

I Think I May Have Lupus? I'd be so grateful for some advice!

Hello all! This is my first post and I'm glad I found this forum as it looks like everyone is so kind and helpful. I've been sick for over 10 years with so many different things including severe migraines, nausea, vomiting, arthritis, other types of joint pain, muscle pain, other types of headaches, severe memory loss (short-term), sexual disfunction, sensitivity to the sun, skin discoloration on my face from the sun, heat rash (at least I thought it was that until I looked it up & it looks a bit different), red rash on my face that comes and goes, joint stiffness... especially in my hands, lower back pain, full-body tingling sensations, lack of coordination, running into things, anemia (but not sure if it's from lack of protein in my diet so I'm working on it) & fatigue. I also just tested positive for a a D-dimer test which sent me straight to the ER for hours of testing for blood clots in my lungs and heart which all came out negative. I looked it up to see if it could be related to Lupus and it said that it was one of the most common reasons a D-dimer test would read a false positive for blood clots.

I never thought of lupus until I started getting the red rash periodically on my face then looked up the pictures of the lupus Tash then compared pictures of heat rash with them and realized that my rash didn't look like heat rash at all. I assumed that it was heat rash because I would get it when I was hot.

My main question to any of you us that I want to know if you ever experience full-body tingling? It's accompanied with nausea & sometimes vomitting which can be mild or extreme and you basically feel just completely in-operable from head-to-toe! The way that I explained it to my doctor back in Cali was that when these episodes come on, I feel as if someone has poisoned me. I don't know how else to explain it. My episodes can last for as short as 4 hours or as long as 4 days. I spent this last Christmas for 3 straight days having an episode and couldn't leave my home. My new doctor is more concerned about saving the hospital money than saving lives so here I am asking for your help. I will say that stress definitely plays a part in bringing on my episodes and I'm currently taking Topomax for migraine prevention which helps with that part but but my old doctor says all he could think was that I must be having silent migraines where I have all of the migraine symptoms but not the migraine. I'm just not convinced.

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Hi Nikitty,

Lupus affects us in different ways, I've never had full body tingling but used to get a face rash (used to be put down to ezma).

I think with your variety of symptoms it would be worth testing! Can you get a different doctor to have a look? Autoimmune can be very serious

Best health wishes x

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It is hard to tell from symptoms alone if you have lupus. Have you ever been referred to a rheumatologist? Or had an ANA blood test? That would be a good start toward a diagnosis.

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I think you need to ask to be referred to a rheumatologist if you haven’t already? I get a lot of the tingling/ pins and needles and was initially diagnosed with a form of paralysing migraine but my rheumatologist (and now neurologist) say these symptoms are as a result of the lupus in the nervous system for me. I get the falling over, disorientation and severe forgetfulness/ lack of concentration at the same time. Have they tried you on steroids? I found that improved things hugely.

You’ve got a lot of symptoms, none of us can say whether it is lupus but you definitely need to find out what it is so do push for a referral.

Good luck x

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Hi there! Thank you so much for your response. So I just got the ANA test done and it came back negative so now I'm back at square one. I feel so glad that I don't have lupus but I'm even more frustrated now because I feel like I'm never going to find out what's wrong with me. I will say that my body is getting so fragile now that it's at the point to where I can't even get really stressed out, over-worked up or allow myself to cry where it makes my body upset because I'll end up getting one of my episodes of being sick and miserable. The other thing that can bring it on is if I'm overwhelmed or working a lot and or if I don't get enough sleep. I was thinking back and when I was in highschool.....I was going to school 5 days a week but also working about 25 hours on top of that which was fine but I'd also go out on the weekends both Friday and Saturday. Occasionally I'd wake up in the middle of the night and have to run to the bathroom and throw up. I never experienced any migraine symptoms until I was about 21.... I had , one time and that was it! I never had another one until I was about 37.

I've also been tested for RA about 5-6 years ago and it too was negative. I have regular arthritis all over the place and muscle pain as well as bursitis. I'm at a loss.

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Hi NittyKitty1969,

Welcome to the LUPUS UK HealthUnlocked Community!

I hope you will find this forum useful - we have a lovely community who are always willing to help and support one another!

There are specific tests and criteria that need to be met in order to make a diagnosis of lupus. To find out how you can be tested for lupus, please read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Skin involvement, joint/muscle aches and pains and light sensitivity are all common symptoms associated with lupus. To find out what other symptoms are associated with lupus, you can download our free information pack here: lupusuk.org.uk/request-info...

Difficulty in articulating thoughts and memory impairment are common symptoms that are associated with lupus; it is referred to as ‘brain fog’ or ‘lupus fog’ by people with lupus. Stress, anxiety and fatigue are a few examples of the causes of brain fog, you can find out more about this in our blog article ‘Coping with Brain Fog’: lupusuk.org.uk/coping-with-...

It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

I have included some information links that I hope you will find useful:

Light sensitivity: lupusuk.org.uk/coping-with-...

Lupus & the skin: lupusuk.org.uk/wp-content/u...

Lupus, the heart and lungs: lupusuk.org.uk/wp-content/u...

Pain management: lupusuk.org.uk/pain-managem...

Managing fatigue: lupusuk.org.uk/managing-fat...

Changing doctors/consultants: lupusuk.org.uk/getting-the-...

Please keep us updated, wishing you all the best.

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