Hi

[Jazymay]

I have just discovered some interesting symptoms that I have had over the decades. I wonder if lupus symptoms can change over the years.

What has caught my attention is photosensitivety. When I was 18 I went on holiday with school friends and I was really sick with a skin reaction that was clearly on the parts of my body in direct sunlight. This was hilighted as we hired a boat and I did most of the "driving". All the skin on the top of my feet, above the knee, wrists and lower arms, shoulders, chest erupted into tiny blisters that hurt and itched so badly that I put frozen bandages on to try and sleep. From then on, for a decade, I had to keep out of the sun.

Not long after the rash resolved itself we moved to Australia and I found that I got achey and exhausted in the summer. Very quickly I had a couple of years of severe "migraines" but it was a full body reaction. Slowed cognition, almost unconscious at times. Painful all over and slurred so each and I forgot how to walk on the way to my bed. On one occasion I was taken to the ED and was taken to be resuscitated, but I could still hear what was going on.

The migraines were not relieved by normal medications and I had morphine on one hospital visit which didn't stop the pain, but eventually sent me to sleep.

Since then I have had, what was eventually thought to be fibromyalgia.

But I have recently been diagnosed with functional neurological disorder. My legs get unco-ordinated and weak, sometimes with tremors. I am cycling through gait problems, a couple of days as normal then exhaustion and back to gait problems.

Is this type of change, over 20 years something that people with lupus have experienced? Or am I trying to make 2 + 2 make 5?

Any insight would be gratefully appreciated.

Thanks, Jaz

[whisperit]

Hello Jazymay

I don't have your length of experience, but it sounds plausible to me. After all, these are systemic conditions, so any system in our body could be affected at one time or another. For me, I was first diganosed when the predominant symptom was interstitial lung disease. two and a half years later, that had resolved, but then I got polymyositis - a completely different kind of thing. I'm now experiencing symptoms of adrenal damage. So there's never a dull day with lupus! x

[Jazymay in reply to whisperit]

Thanks for your reply. So you have changing symptoms over time too. I wonder if you have heard of people having neurological problems with lupus? This new diagnosis is left of field for me, and somewhat problematic. I recently stopped work due to problems driving- cognitively, but the walking is also an issue half the time, and not getting better!!

[whisperit in reply to Jazymay]

Yes, there's several regular posters here with neuro symptoms. I daresay one or two will reply in due course x

[Shorthouse]

My symptoms have definitely changed over the years.i don’t ever get the rash anymore .I had severe rashes.and went into hospital a & e on holiday with cold and heat .3 times put on anti histamines.Havent had this for5years now.i have changed my diet radically .seeing a good herbalist.This has really helped.I don’t eat any prosessed food.lots better .

Very wary of the sun and extreme cold??

[miccika1]

lupus.org/resources/how-lup...

[Elizabethjea in reply to miccika1]

Many thanks, I found this very helpful.

[Jazymay]

Thanks!

[123MrsG]

Absolutely! My experience is exactly that. My symptoms have somewhat evolved of the years. First of all I was only diagnosed a few months ago at 40 years old. But I’ve been having lupus symptoms since I was 15. In my teens my main symptoms were a lot worse than they are now. These included: erythema nodosum, flu like symptoms, fever, pleurisy, painful swollen joints and fatigue.

Then at 22 ish I developed photosensitivity but the erythema nodosum stopped and I didn’t get joint pain that often. Occasionally I would get fatigue and aches but these were not that debilitating. If I went on holiday and got bitten by a mosquito I would react really badly with swelling, bruising and scaring.

Then in my 30s things got a little more tricky. The fatigue, joint pain and muscle aches came back and were much more frequent. I got random rashes all over my body. I also got terrible chest inflammation and breathlessness. I was very restricted and had to give up work. It was a very difficult time. All of these issues were put down to another major chest condition that I have. And I accepted that explanation even though I had a feeling that something else was going on.

Then in my late 30s I started to get vasculitis rashes on my ankles. One time these rashes coincided with a medical appointment I had for my chest. The dr ordered a rheumatology screen which then showed all these markers indicating lupus (albeit at a milder end). That’s what triggered my diagnosis. You might wonder why I didn’t get a rheumatology screen sooner. It’s a whole other story that I don’t fully know the answer to yet.

So yes, my symptoms have changed and evolved over the years and I think this is fairly expected.

[Jazymay in reply to 123MrsG]

That is fascinating! I had a very nasty "virus" in my teens that I barely remember because I was so out of it for however long it lasted. I guess a couple of weeks, but actually have no idea. I know it was bad because it was the only time my mother took me to see the doctor- which is a different story. In my teens I was always tired and felt like I was getting flu regularly, but nothing really happened. I got headaches all the time too. And the sun rash at 18.

In my adulthood I was tested for the virus you get that keeps coming back - forget the name. It was positive but not currently active. It just meant I had it at some time in the past. So I thought the illness in my teens was that. And that was why I had recurring flu like aches.

When I moved to Australia, my mosquito bites would bruise to about 5cm diameter, and scab over. They were painful.

I have always been prone to allergy rashes. The usual nickel, but also carpet, grass etc. And I got what started as hayfever, that turned into migraine. Or maybe they overlapped? That was the first serious illness. I would lie on the couch and felt barely conscious. It was awful. But my ex forced me to go work through guilt. We also had 2 children too. So often work sent home in a cab because they wouldn't even let me drive, I was so out of it.

A gp eventually put me on propronol and the "migraines" became controlled. And I got new work and seemed to get better. Except that I had developed sensitivities to milk, soy and wheat. Or that was how I tried to control my gastric symptoms.

Then I got ptsd from childhood stuff, and it was all put down to that. I have been in therapy for 10 years, which has been a life saver. I even got back to part time work.

During this time I got exhausted, achy in my muscles and bones and still had migraines. My psych kept saying it was ptsd. But I felt sick. Eventually a neurologist suggested fibro. So I went with that. It fits because it covers a ton of symptoms.

Then I started to get weird sensations in my hands and feet. Like bugs crawling, numbness from normal positions and exhaustion. Suddenly, one day my legs were so wobbly I couldn't walk without help. My son took me to the ed where I was admitted to neurology. They diagnosed functional neurological disorder that, I feel the diagnosis is mainly based on my mental health history, as it has been since the PTSD diagnosis 10 years ago. Again, a big story there too. MRI is clear, therefore it is mental illness!

I just left my job of 2 years because I am concerned about my cognitive ability driving. Since October when I got the fnd diagnosis the walking comes and goes, but is noticeable 2/3 of the time. Fnd is supposed to get better. They said, a couple of weeks. I am currently sitting typing with buzzing in my left leg, had big probs walking today with jerky legs too. And shaky hands this morning.

I cannot plan anything, another reason why I have left work. I am at home alone these days, and have just been resting and not pushing myself. But still waking up to a variation on the previous day.

Thank you so much for your detailed reply. I don't know what I will do with that information yet. But it is really fascinating. Even if it's not lupus, other people have some crazy $#!/ to deal with too!

[Jazymay in reply to Jazymay]

Don't know if it's relevant. Both my kids had asthma and my daughter is t1 diabetic. They both had a little eczema too. They are also prone to allergies like antibiotics.