lupus flare or long Covid?

[Marley]

anyone else wrestling with this one? I assumed a flare but my bloods don’t suggest that. Although to be fair this has often been the case in the past. My consultant has said to go ahead and increase my steroids but although I’m improved, I’m still far from well. He suggested it could be long Covid. Today I’m worried because the main symptom is dizziness. Not sure I’ve ever had that with a Lupus flare. Anyone else experienced dizziness as a symptom? It feels different to brain fog but it’s so hard to describe these symptoms as you all know!

[Bakbre]

Hi Marley

Sorry to hear you’re not feeling well and hope you feel better soon.

I have CTD & Rheumatoid Arthritis and I have dizziness most of the time. It usually happens when I stand up from sitting or turn around quickly. It usually only lasts for about 5 minutes but is very debilitating and can be quite embarrassing sometimes! My GP told me I don’t drink enough and to raise my intake. I drink at least 4 or 5 bottles of water a day, plus coffee. Anyway I started drinking more but it obviously didn’t work as I still get dizzy!

To tell you the truth I think it is just one of those things and all part of our illness but I am going to mention it to my Consultant next time I see him. Maybe you should ask yours as well. After all they can’t help if they don’t know.

Hope you get some answers soon.

[Marley in reply to Bakbre]

I will mention it although I’m now thinking I’m using the wrong word - my “dizziness” isn’t on standing or turning around, it’s more generalised. Like a constant wooziness. It’s so hard sometimes to find the right words to describe how you’re feeling!

[health8ay34i in reply to Marley]

How are you doing now? I just had covid (2nd time) and the cough, sore throat and runny nose has gone however, I’m experiencing this dizziness too - it’s more of a heavy head feeling, spacey and unsteady feeling. I’ve had vertigo before and that was true room-spinning but this post-covid dizziness is not like that. I was wondering if you’re still dealing with it? Thanks

[Marley in reply to health8ay34i]

I’m still very unwell and have had to finally accept this is Long Covid, not Lupus. That is partly based on the fact that when I increased my Prednisolone to 40mgs a day for two weeks, there was no improvement whatsoever in my symptoms. Also because the symptoms, although similar are different too. The dizziness is a key difference I think. I was never dizzy with Lupus. I also experience weakness in my legs and sometimes my arms, which is new. The fuzzy head is similar but in a different place in my head. With Lupus I describe it as feeling like cotton wool has been stuffed between my brain and the top of my head. This is much lower down - more at eye level. The post exertion malaise is far worse too. I get very tired, very quickly and take a long time to recover. Days if I’m not careful. With Lupus you had a sit down and then generally felt better again. The other symptoms are chest tightness and occasional palpitations. I feel sure I was having a Lupus flare early on and wonder if that predisposed me to Long Covid. I also think the Lupus settled at 20mgs. That was the day I woke with a clear head only to have it return as soon as I was up and walking about. With Lupus my head was always fuzzy. With LC it is often clear until I start doing stuff

Hope this helps and I really hope you feel better soon

[StriatedCaracara]

I had my UCTD diagnosis following Long Covid.

Think that some autoimmune symptoms may have resulted from what happened as I responded to the virus.

I was getting trembly dizzy spells before then though, along with arthritis. Assuming MS like sclerosis or atrophy somewhere, which flares. Never been offered MRI or other scan to confirm.

Also sometimes get POTS autonmic dysfunction when stand up or after eating. Normally then I feel need to have more fluid. Sometimes I crave salt or sugar too,

Take care.

[StriatedCaracara]

Hi Marley

Following up to my last reply.

Here is link to a post on research into neurological effects of covid. It includes a link to a webinar given in Texas in Sept 2021.

healthunlocked.com/lupusuk/... br

Also, brain issues two years 'down the line' has been in the news here in the UK this August - additional studies probably being reported.

Doctors may be thinking about 'covid and the brain' more as a consequence.

[nwfrugalista]

I’m sorry you’re dealing with the dizzies. I have it frequently and it’s miserable. My doctors have vacillated between diagnosing MCTD and SLE over the years, but we all agree I have auto-immune ‘something’.

Years later, after a craniotomy in 2017 I developed a dysautonomia condition called POTS (which is a syndrome that many AI patients develop, as well as those who suffer concussions/TBI/undergo brain surgery, and now is also linked to long COVID). Dizziness is a frequent symptom because with POTS, because one’s body is inefficient at constricting blood vessels, which causes blood to pool in the lower extremities (and causes one’s heart to race to compensate). The lack of blood flow to the upper body causes dizziness and sometimes fainting.

I would definitely suggest that if it’s a new/uncommon flare symptom for you, and it isn’t responding to treatment for the AI, that you talk to your doctor about considering it as potentially long COVID related (and ask if they are familiar with POTS or can refer you to a specialist who is). POTS can be anywhere from mild to completely incapacitating, so if that is what is going on, getting diagnosed and a treatment plan in place is very helpful to mitigating symptoms as much as possible.

Sending healing thoughts to you 💜

[Betty909090]

POTS:

bhf.org.uk/informationsuppo...

[MusicalFurbaby]

Hi Marley, yes I’ve wrestled with the lupus-v-long-COVID dilemma for the past 6 months! I also live with chronic dizziness, ever since 2014. They ruled out all the obvious causes and eventually diagnosed me with Mal De Debarquement syndrome, which means it feels like I’m on a rocking boat All The Time.

It’s hard to work out which bits are lupus and which might be long COVID, because there is soooo much overlap between the two. And you’re right, normal bloods don’t necessarily mean you’re NOT flaring, it just means they can’t find anything right now. Could it be a combo of both? I think that’s where I got to with mine: it wasn’t COVID, but something that presented very similarly to COVID, and was exacerbated by lupus. 🤷‍♀️

[StriatedCaracara]

Another video

Long-COVID Patient Education - July 11, 2022

W. Michael Brode, MD discusses Long COVID-19 as part of the enduring pandemic. As the medical director for the Post-COVID-19 Program at UT Health Austin, Dr. Brode and his team work together to diagnose and treat patients experiencing long-COVID symptoms through his comprehensive, multidisciplinary model of care.

youtube.com/watch?v=V-HVtsE...(Not working as expected?)

5 minutes in

[HedgeEnd]

Hi, I had covid 6 weeks ago. I am now either having a lupus flare or long covid. I had bloods done this week but consultant thinks it's probably long covid. I have a constant head ache, feel weak and woozy and sort of dizzy sometimes. Also feel a bit sick at times and exhausted and feel sort of heavy and just really awful in general.

I'm hoping symptoms won't last too long and I hope you feel better soon

[Marley in reply to HedgeEnd]

Were you very unwell with Covid? I had recently had a fourth vaccination and was only ill for about 24 hours. The flare/ long Covid symptoms came much later. I don’t know if this makes any difference as obviously there is still much research to be done. I increased my steroids which helped a bit but haven’t fixed me as one would expect. I’m seeing my consultant again next week so will see what he thinks now. I do hope you feel better soon. Have you been able to try any medication to help with the symptoms?

[HedgeEnd]

I was quite bad with covid but was improving and then got bad again. GP gave me steroids (I'm not l normally on them) but they didn't seem to help. Pain killers have no effect on the headache. I'm very slowly improving. Will be interesting to see what the bloods say. The symptoms are so similar.

[Marley in reply to HedgeEnd]

hi! Just wondering how you’re getting on. I’m definitely confirmed with Long Covid. I went up to 40mgs predniolone to no effect! Still pretty unwell. Primarily with fatigue, fuzzy head and heavy legs. Very debilitating.