I haven’t been diagnosed with Lupus but I’m thinking this is what has been wrong with me for a long time. Over the years I’ve had two bouts of pericarditis. Ive always suffered with freezing cold hands and feet. Occasional pain in my toes and fingers. Brain fog, can’t remember the right word, forget names. Getting temperatures for no apparent reason. I’m sure my GP thinks I’m a hypochondriac
Things have reached a very serious head over the last 3 weeks. I got a bacterial infection and was given antibiotics to clear it up. However my temperature went sky high. I thought it was covid19 but tested negative. I got so sick I ended up in the hospital Emergency room. Numerous bloods were taken they couldn’t find anything wrong except my temperature. I felt and still feel like I have a bad doze of the flu. My face is flushed and the skin on my arms are sore. I have been sunbathing but now my arms are sore with the sun.
I think the infection I had has bc caused a massive flare of something and I’m suspecting it’s Lupus. I think I’ve probably had it for years but it’s never really flared up badly until now. I’ll put a picture of my face so you can see how flushed I am. It’s 0100 am I can’t sleep as my temperature is high and my feet are on fire. My GP is going to do more bloods but I’m thinking of asking her to refer me to the Lupus Center in London Bridge. I’m very depressed and feel lost. How can this be happening to me at this stage of my life.
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reo747
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Hi Reo747, I just wanted to respond to say you're not alone. I'm no Dr so can't help with any diagnosis but it does sound like you have a decent Dr there who is continuing to investigate and not dismiss you and your symptoms. Half of the battle is getting a diagnosis or decent treatment plan, for whatever we may have.
Brain fog is the pits, and one of the first pieces of advice most folk on here will give is to write all symptoms done. Produce a symptom diary so that in that pressured 5min rushed appointment you make sure your Dr knows everything.
Another piece of advice many on here have found useful is to watch what you eat. You may have realised already that you tolerate certain foods better than others. A change in diet may not cure you, but it can certainly help improve how your feeling while you await diagnosis.
Hello reo....sorry you are suffering at the moment.if you have lupus its possible youve have had it for sometime without realising it and something has triggered a flare .stress over covid,uv light or an infection maybe.id scrap the sunbathing ,slap on the factor 50 and cover up from head to toe and stay in the shade as many with lupus are photo sensitive to uv light.during the last hot spell uv levels were 9 in some places the UK scale only goes up to 8 !.i would request a referral to rheumatology they do more specific indepth bloods like immungloblins and compliments.on a scale of 1 to 10 how would you rate fatigue ? As that's the one symptom that seems to unite us all.
As apricot said write everything down....every pain,feeling,sensation and symptom even if you dont think its relevant.i agree also with Kevin....educate yourself then you are less likely to be fobbed off by any dr you come across who's not really interested.
Getting a diagnosis of lupus can take years (5 yrs in my case) so be prepared for the long haul.repeated trips to drs and hospitals and endless blood tests become the norm.it can be a real rollercoaster of a ride so seek help wherever and whenever you need it we are all in the same boat and here to support you.chin up kind regards xxx
I just want to feel normal again. I fly as crew. Normally I’m not really fatigued. But right now I’m not sleeping at all well due to a high fever and stress so I’m exhausted. I just want the fever to go. So anything you can suggest to help would be great. Did you see the picture of my face does it look like the butterfly rash?
Yes I did and I really wouldnt like to say.butterfly rash is something I dont get but I do get itchy patches on my forearms which drive me mad.a piriton tablet usually helps with that.im not sure anyone with lupus ever feels normal like they used to again.brain fog i can relate to that always seems worse when I'm really tired.ive learnt the best way to deal with it is not to try and attempt anything and sleep.naps is one thing that helps when dealing with lupus. Xx
Our tests for Covid in the US are not reliable and this sounds so much like this virus. Ours here are 50/50 accurate. I'm hoping yours are better. Do you still have a fever?
Not always, I've found a few ticks on unsuspecting patients in my time. They are sneaky little b*****s. I've had a few myself.
Also not everyone gets the typical bullseye bite mark. We'd always do a test to exclude an infection anyway, not to find it. Symptoms are enough to justify a test.
That’s a point I will raise that. What do you think about my face rash though and my two bouts of pericarditis that I’ve had in the past. I’m so stressed. My heart rate is normally 60!at the moment it’s at 115 at rest.
Get her to refer you to the Lupus Centre in London Bridge. I've found a lot of GP's would like to be rheumatologists but generally it's not in their remit. Good to keep in mind that there is a hostility between GP's and Hospitals and we often get caught in the crossfire, that's been my experience.
Your story could be mine exactly. Although mine was exacerbated by the wrong prescribed drugs and surgery when I was 49, I think I have always been different from the average person - very sensitive.
I find managing stress is vital, too. It can set off a flare and bad at that. I have been managing it all with diet, exercise especially outside with breathing properly, meditations, etc. but my husband had a fall and his losing his sight it seems - waiting for an appointment. This has caused me extreme stress not just with extra workload, but about the future without him being able to do much for himself.
I have to keep positive for him as well as myself or the symptoms just increase.
I hope you find a way of managing it as there are ways.
Thank you everyone. The biggest problem is feeling like I gave the flu. Temperature is going as high as 39c. Surely this will return to normal? Also as I said previously I fly as crew. I don’t want to lose my job.
Good your GP is doing more blood work. It is sad you have to be worried about what your doctor thinks. They are here to help you. Just because they don’t know immediately what is wrong, does not mean they think you don’t have an illness.
It would be helpful to record your temperature. Fever is now part of the new lupus classification. In fact, it seems to be a feature that helps differentiate between mimickers. Doctors take fever of unknown origin seriously.
Hope your GP saw your facial rash when it was prominent.
Reo, sorry to read you are not feeling at all well and finding it difficult to get a definite diagnosis.
You've already had some excellent replies here. So I can only back up the following 100% and say begin doing this as soon as you can - get the DSDNA, ANA, ESR etc tests done. If these are positive, you definitely have some backing to your thinking. However, I recently had contact from an ex of mine who was very sick a while back. Dr's initially and far too quickly diagnosed her with Lupus, however, after further tests they revoked this diagnosis. She is now thankfully absolutely fit and healthy - no illnesses what-so-ever.
The other thing someone here recommended was the Lupus Centre in London Bridge. Even if you have to pay for a couple of sessions, for piece of mind it definitely may be worth doing.
I'm hoping you are wrong and it's nothing more than something minor
Get yourself to London Bridge - I run a support group and got one of the members referred there - after a couple of hours there testing - she got her answer. It is your right under Patients Charter to request a referral where you choose. They can do it online now - how you feel is so common. You will adjust - good luck.
they are several studies that lupus and low thyroid can be connected and wondering you have had test for your thyroid levels. Also i started taking COLOSTRUM-LD which helps with the immune system and so much more , much better then other colostrum due to easier to absorb etc.....i am taking the dose that is double the regular dose after being sick and it is really helping....so many links to most diseases starting in the gut.....and this helps also plus probiotics b4 bed every night....which helps immune system and so much more...for thyroid i would get TSH, FREE T3 AND FREE T4 TESTED....and if it is low i would test the two antibodies....
my friend has a similar bout and dr put him on a whole foods diet, 3 meals a day, no processed food, probiotic, vit d3, b12 under the tongue, b complex and food grade multi vitamin and krill oil,and q10
Thanks guys. My heart Rate is normally really slow like 55b/m but it’s now 120b/m my temperature right now is 39.1c I’m so stressed which isn’t helping. Can I lead a normal life agsin? Going on holiday (cruises) working (cabin crew for BA) and sleeping better. I don’t have fatigue really mainly the opposite I’m so hot I can’t sleep. Is there meds they will give me to reduce temperature
The fever lasting so long bothers me. Definitely no normal and it's mentioned as a symptom of lupus but your has been so high for so long. I know in the US our tests are 50/50 accurate so I looked to see what you have in the EU. Here's a link. maybe you should be tested again. I believe I have lupus too but even with 2 positive ANA tests my doc says no. Keep looking for a cause.
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