I found some of the content surprising, mostly based on stories of people living with Lupus and how it effects everyone differently. I think the one that was the most curious to me is the one about Fatigue. What are your thoughts? Even when my inflammatory markers and outward signs are down, I'm still tired 4 out of 7 days. Mostly because a full day of activity requires days of recovery. My doctor calls this "exertion intolerance". Thopghts?
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hm I don't buy it. About fatigue. My first doctor has the same opinion and told me I have fibromyalgia since i'm still fatigued even thou I don't have an active flare. I'm taking Cymbalta for FIbromyaligia and i'm still fatigued. My opinion is that there must be some other markers that are not known yet that could track why we are fatigued. So this guy says 10-30% of lupus patients are fatigued when not in active flare (have fibro). THat seems really low to me. Is there anyone on this lupus that doesn't feel extremely fatigued when not in flare? Please raise your hand and prove me wrong. I really wish I'm wrong. Fibro has to do with overactive nerves and pain in specific areas. I for example do not have that but my doctor labeled me because of thinking like this doctor in the video.
Exactly. I also don't have any wide spread pain. I have pain in wrist and fingers that get worse when i have a flare but never completely go away even if i show no inflammation in the blood. Obviously the tests are no good enough to detect the type of inflammation that's causing my lower level wrist and other small joints pain
I'm currently having alot of pain in my fingers, wrists, ankles, feet 🤔 and my arms n legs feel heavy and hurt. I'm due to see someone next week, I'm hoping I get some answers.
Hmmm, I’ve only watched the fatigue and lupus video and that’s got up my nose enough to make me need to spread watching any more of these “myths about lupus” for a long time. To me, he seemed to contradict himself ( and I’m not sure of American terminology, but “physician” strikes me as not high up the ladder, though they’ve let him be interviewed about his opinions so I assume he’s knowledgeable) This was too short a clip to give much evidence to back his opinions. 🧐
I was going to write more, but I’ve never had fibromyalgia mentioned or suggested. I’m a peaceable person, yet something about him made me think he’s very punchable. Sorry.
O m g Terry Wogan used to do a slot about people he would like to punch this man is asking for one.I have often thought that my lupus gives me a very short fuse (because I’m always tired ha ha)
Physician is a regular doctor such as rheumatologist so he is definitely high enough up the ladder. My first doc has the same opinion and he is a teacher of other doctors so no matter how high up the ladder the arrogance and missunderstanding is present at all levels. Yes this guy is arrogant and very punchable.
Nice one miccika! 😂😂 at least we try to keep a sense of humour! Most days I feel like punching someone, knowing they must have their own problems. Best wishes to all in this forum.
I have read this elsewhere too. It just does not seem to mirror my own experience or that of others here. The reason this doctor emphasizes this is because, as he says, treating with steroids will only cause side effects. There was a study in which they did cardio-pulmonary exercise testing on lupus patients. They showed significant differences compared to healthy people when the disease was not active. I am not convinced that it is possible to pick up low level inflammation that causes fatigue in patients with systemic autoimmune disease. I hope they continue to do study this area.
I agree with everything you all are saying. The fatigue thing left me flabbergasted. Not going to lie, I think the whole concept of “flare” needs to be rethought. Seems like the exception that people go from perfectly awesome to horribly sick and back again. IMHO most are living “meh” with some bad days/weeks/months thrown in. Oy...
Agreed. I even wanted to write an email to John hopkins that posted the videos but they dont have an email just phone numbers. So disappointing that such institution makes these videos.
I'll see what I can do. It's not cool that such a prominent institution that so much of the medical and patient world turns to is putting out disinformation. See the study @miccika1 posted below and the pull quote I found. I'm seeing one of the OGs (if you will) of Lupus research and clinical practice on Wednesday. Took about a year and a lot of finagling to get an appointment. I swear the first thing out of my mouth is going to be this fatigue issue. Selfishly, I need to know if it’s the Lupus and AS causing it or (and the dread of even thinking this could be happening) that I have developed CFS or Fibro. From what I have read, it’s not rare to get those. That being said, if chronic fatigue is really and truly hitting 76% of us, then there would be an argument that it’s not another disease, it’s just a prominent feature of this one. I know CFS (ME, correctly) has other symptoms, but gotta be straight: some of those line up with us, too. There are times when I have thought that some of my more incapacitated ME friends may have been overlooked when it came to Lupus. I know at least 2 were never fully evaluated before being given that diagnosis. Shame .
Lots of words too big for me and I’m too tired to google them, but this kind of paper just seems a more intelligent approach: it’s a genuine examination of possibilities and testing hypotheses, not opinions.
I hate to think of people without lupus or other autoimmune disorders trying to understand us by just going on the short clip by the physician.
This is a fantastic find! Definitely too much for my brain to digest in its entirety, but I pulled this from the article:
"Severe chronic fatigue is also experienced by many people with an autoimmune disease. Thus, upwards of 67% of people with Sjogren's syndrome [23], 76% of patients with systemic lupus erythromatosis (SLE) [24] and 70% of people with rheumatoid arthritis [25] suffer incapacitating levels of fatigue."
76% of us present with severe, CHRONIC, fatigue. I'm sooooo gonna find a way to contact JH and see why they have patient info up that isn't aligning with the science. Obvi, we all know it to be true because of what we experience in our daily lives but I know many, like me, try our best to stay on top of the research and data and that info says ... we're really tired!!!
This article is great. It was way too complicated for me. What I did take from it was is that the fatigue may come from basic cellular damage. They relate the fatigue of Parkinson’s, MS and chronic fatigue syndrome to lupus fatigue. So is this the same point the Johns Hopkins guy is making? The fatigue is real and severe. But it may not be from active inflammation but the nerve/muscle issues of fibromyalgia, which is essentially a nerve disorder? Johns Hopkins is one of the foremost rheumatology centers in the U.S. I am leaning in the direction that there is more consistency here than first meets the eye. Thanks for posting this article. I know it will be even more enlightening after I get someone to translate it! 😅
The thing that bothers me is that if most people w lupus have fatigue then it is a symptom of lupus even if it is not being caused by inflammation. This means lupus is not only an inflammatory disease but has other aspects that are not currently properly researched and defined. So instead of labeling fatigue as something else than lupus the researchers should find where this important aspect/symptom of lupus is coming from. With so little knowledge about lupus just claiming that it is only an inflammatory condition because that's all they know and dismissing other possibilities is idiotic.
Yes, I completely agree. It seems some of the studies are attempting to get at the cause of the fatigue in the absence of inflammation. The doctor’s attributing the fatigue to fibromyalgia seems simplistic even if co-existing fibromyalgia seems to increase fatigue in many studies.
The problem is that 1. Nobody knows exact cause of lupus. And 2. There is not enough of research to get to the bottom of it. There is plenty of money invested in finding solutions to boldness but not mich for lupus and other autoimmune diseases. It took me awhile to find anything less than 20+ years old that dealt with fatigue and lupus when for so many folks this is the primary issue.
I agreed to take part in some research which is taking what I assume must be a large group of subjects, since Harvard and universities in Italy and Spain ( and possibly other places) are involved. Broadly speaking, it will be looking at all our blood samples, scans, and any other investigations to try to find out what might be similarities in people with connective tissue disorders, and from there, if the disorder progresses, who has particular markers that indicate this.
Once I’d agreed, I filled in pages of questions which included a lot about fatigue. I then did one of those cognition/ memory tests because they are joining forces with another study which is researching, I assume, “brain fog”.
When I was first diagnosed I was asked if I’d take part in research. That was to see who is dead within 10 years, and what were the causes. I think they’ve taken a few steps forward since then.
I don’t know how long the newer research will take, and I’m happy if it helps anyone in the future. At the moment, it means I’m seen by a rheumy every three months, and have an extra set of blood samples taken. Because they have the clout and resources I’ve had early stage Sjögren’s diagnosed. A radiologist somewhere has taken a close look at x rays and scans, which has found I have scoliosis.
No idea what’s next, apart from a pelvic and trans vaginal ultrasound coming up to check my urinary tract and kidneys. There have been problems for about a year now with inexplicable low potassium in my blood. My urine regularly has blood and protein in it.
Sorry, this is a long response, but I thought it might offer a ray of hope about fatigue.
Edited to add that I was asked if I agreed to join the first research project by a swooningly handsome Italian Professor. He was most definitely not punchable 😉
I am hoping this is only one doctor's analysis and not widespread as those waiting for a diagnosis will continue to feel unwell and be fobbed off with "it is just fibromyalgia"
I have had lupus for going on 30 years, 10 of which were undiagnosed, largely because of an ignorant gp who continued to hand out antidepessants.
I have also fibro, which I think was started when I had cancer some years ago. The two are very different and I am reluctant to tell people I have it because many people are sceptical and tend to think of hypochondria and attention seeking.
I can only speak for myself when my chronic fatigue is at it's worse, I always blame it on lupus. Fibromyalgia and CF get short shrift from the medical profession and this doctor's view are compounding it.
Whilst I do not advocate violence, in this case I would happily join the queue to punch this man, if only I had the energy!
You are absolutely right about the hypercondria cause I have been fobbed off after have fatigue and also mouth ulcers. Dr shoved a torch in my mouth like it was cave and said nothing there at all.
Just remember this is his opinion only. I don’t agree with most of what he says. Unless he has lupus he is not an expert. After working in the medical field as a Nurse for over 40 years I have learned how fallible they are. For instance my first job out of nursing school I worked on a cardiac unit and you could show an electrocardiograph strip to several different doctors and they might all have different opinions of what the strip showed. So read everything you can on the subject of lupus but when a physician starts stating the opposite of what we know, be very skeptical. Anyone with lupus knows that fatigue is a big part of this illness, and it is not normal fatigue it’s I can hardly get up (or I can’t get up) to live my daily life fatigue. So I would take what he says with a grain of salt because the fatigue statement alone is a disqualifier of what he says in “my opinion “ not to mention the headache statement. hugs to everyone, Nan
It is interesting. My doc at the London Lupus Centre, when commenting on this phenomenon (low blood markers but still pain and fatigue) said I might feel better if I came off steroids (i.e. they might be contributing to the fatigue) and also that I have borderline hypermobility. He also said it may be the Lupus since ongoing mild fatigue is common, and may be connected to emotional issues (i.e. mild depression).
I've suspected I might have fibromyalgia but there are disputes about how it should be diagnosed.
Added to the confusion is that I'm going through the menopause and have post-concussive syndrome, both of which can also cause fatigue.
Ho hum! Anyway, interesting videos. I suspect people are taking more steroids than they need to, and the big thing in medicine is getting people off them it seems.
I want to say.....walk a mile in my shoes..... except I can't do that most of the time as I'm too fatigued. If fatigue is a myth, why have I not had an evening life in over a decade. If fatigue is a myth, why do I cry some days taking a shower because it's so exhausting. I'm a pacifist at heart, but for him I would make an exception.
These days I don't show inflammation, I've only ever needed pain management, with hydroxychloroquine and not "stronger immunosuppressive medication", for the Lupus, and currently my SLEDAI is 0 because I'm under great "control" for my Lupus
Diagnosis, good treatment, pain management, pace activities, gentle exercise have all given improvement in my fatigue level but I STILL HAVE CHRONIC FATIGUE and yes I do have Lupus with strong positive ANA, lots of other "lupus criteria symptoms". The fatigue hasn't disappeared just because my SLEDAI is low / 0 , or because I'm "medically mild and stable"
Please Paul_Howard can someone from Lupus UK try get this JH video to be "reviewed" / changed, or removed, it's damaging to dismiss the seriousness of chronic fatigue due to Lupus
Thank you for tagging me in this post and drawing it to my attention.
It is a rather controversial opinion and one that I think a lot of other clinicians and researchers in the field of lupus would disagree with (although not all). Most researchers looking at fatigue who I have spoken to are of the opinion that the current biomarkers we have are insufficient for measuring some disease activity, like fatigue. We funded research at UCLH which is looking at the causes of lupus fatigue and they are suggesting it could be something to do with the way the cells synthesise iron - lupusuk.org.uk/dr-chris-win...
I'll start by sending this link to Dr Wincup and seeing what he says. I'll see if we can start a conversation amongst lupus specialists.
Thanks Paul! Interesting about the iron. I digitally track my RBC levels which are consistently low (about a hundredth of a decimal point above the normal low) or they fall significantly below the normal low. However, my doctors don’t seem to care. But I do notice a difference when I consume more iron rich protein foods. Not major, but just enough to pay attention.
Thanks. The iron idea is interesting I occasionally get a "liquid iron vitamin supplement" to use for short periods to try "help boost my health" , and I do think it helps
I looked up the contact information for the Lupus Center @ Johns Hopkins (provided below). Normally, I hold JH, Mayo, Harvard, etc. in high regard. So much so, I often take their word as gospel. However, in this particular case Dr. George Stojan needs to be held accountable for (1) not aligning to the extensive research and findings re: fatigue & pain in Lupus patient and (2) for using their brand to sway patients and those close to them. The effect media like this has on the mental wellbeing of patients can be significant. IMO it makes you upset, angry or, worse, makes you doubt what you're experiencing and what you know to be true. I'm going to set up a link where you can provide your feedback to the doctor, his boss and the JH Rheumatology clinic. I encourage you all to share you feedback, knowledge and concerns. I don't want to hammer them, however, patient's voices need to be heard and their media planner (aka person/department/agency) who thought this kind of black and white thinking was a good idea for content needs to be held accountable. I will get a feedback form link set up and post it soon. I'll gather everyone's feedback and send it to them, via mail, fax and Facebook. Maybe we'll get a response or maybe we might be able to inform his thinking. Whatever the case, it takes a village .... as they say.
They posted the Myths of Lupus on Facebook. You can leave comments there. The link above points to the one on Fatigue, but you can find the others as well.
Just posted an overly long reply. Hopefully more people will at least hit the video with some of those angry emojis. I really do worry about the newly diagnosed and those that have doubts their symptoms.
I've e-mailed the American Lupus advocate organisation known as the Lupus Foundation of America, asking for their input / possiblity of forward that e mail to John Hopkins rheumatology as I think the "headline comment" is so destructive to good lupus awareness.
I also Facebook reported that video as "fake news" perhaps if enough people do that Facebook / John Hopkins will see how misleading and damaging this "opinion" is.
I find it shows utter contempt for my disabilities, and personally I think it could be considered 'gaslighting'
I contacted Dr Chris Wincup (Consultant Rheumatologist, UCLH) with a link to this video and he has kindly taken the time to share his thoughts and response;
"This is an interesting video regarding fatigue, a symptom that is widely reported by people who have lupus. In my experience the challenge with fatigue is that it is not clear cut!
It is difficult for both patients and doctors to define what is actually meant by fatigue for a start. Secondly, many older studies have not focused on fatigue as a major symptom. Certainly, in the video it is correct to say that patients with active lupus are troubled by fatigue. When lupus is active a number of chemicals and antibodies are present in the body and this can cause a similar sensation to the debilitating fatigue felt when someone has flu. However, in my experience, patients with lupus that have little in the way of other signs of active lupus and ‘normal’ blood tests are still troubled by high levels of fatigue. This would go against the suggestion in the video that in patients with inactive lupus that fatigue is not due to the lupus. It is correct that there is a higher proportion of fibromyalgia in patients with lupus (up to 30% is quoted in this video), yet a number of studies have reported 80-90% of patients with lupus have fatigue so this does not really add up.
Fatigue may be the result of sleeping problems (which are also common in lupus), fibromyalgia (as mentioned), pain and other disorders like anaemia or thyroid disease (which are more common in lupus also). However, in a large number of cases the cause of fatigue is not easily explained. When I am asked about fatigue in lupus I often highlight a few points:
1. Fatigue levels do not correlate with how active the lupus is. Even with normal blood tests and no other signs of lupus, fatigue remains a major problem and this has been shown in multiple studies
2. The standard treatments that we use to control symptoms of lupus often do not give much in the way of reliable benefit in terms of improving fatigue. Increasing steroid doses and immunosuppressive medicine do not usually help.
3. At the moment, the only studies that have shown an improvement in fatigue levels are based on gentle exercise however this can be very difficult if suffering from high levels of fatigue
and/or pain.
4. The reason why fatigue is such a problematic symptom is unknown! Certainly the things I have mentioned can contribute to do it but further studies are needed to fully understand why this happens. Simply stating that this is due to fibromyalgia is not an explanation I find helpful as many patients without fibromyalgia still have high levels of fatigue thus making the explanation much more complicated.
In conclusion, there are a number of reasons why someone with lupus may be fatigued. In some cases it is obvious but in my experience in the majority of cases it is not easily explained and so we need to do further research into this area in an attempt to better treat this symptom. As is often the case with lupus, the answer to the question is not as clear cut as this video appears to suggest.”
I read on here somewhere, can’t remember who wrote it but it was regarding some research and that with autoimmune patients a part of their brains do not receive enough glucose.
Do you recall reading this?
I actually felt it was quite valid because during bouts of fatigue I generally find myself eating more than normal, almost like my body is craving for something? To create energy maybe?
No, I'm afraid I don't recall seeing that and isn't something I've heard of before. I would be interested to read any evidence about the theory if I can find it though.
Wendy39 mentioned in a post that her London neurologist said the brain needs glucose, glucose only, and a deficiency leads to brain fog (I think) - though this needs to be metabolised from carbohydrates rather than sucking sweeties!
I have terrible cravings for sunshine...! Some research says it's part of the pathogenic process in SLE...here's hoping the VitD loading dose will help! xxx
He didn't give me the details of the research paper etc - we just had a discussion about it. He was recommended by my Dr K at the London Lupus Clinic and he himself works at Guy's.
I have a copy of his letter to my GP, so will copy the section out here:
"We have been doing PET CT scanning on patients with rheumatological conditions and these show clear evidence of temporal lobe hypometabolism which seems to improve with immunosuppression. This is an immune - mediated memory disorder, but not an active CNS lupus vasculitis as she has no evidence of significant white matter signal change on her scan."
So I have two white matter on my brain MRI. That is also covered in my post, as above, i.e. the discussion we had about the number of White Matter Lesions a person has.
Yes, you are right, I saw a Neurologist in February and he explained what he knew about lupus and brain fog. He said the brain is fuelled by glucose alone. They have done PET scans on the brains of lupus patients with brain fog and looked at glucose in their brains. Is the glucose getting around the brain? Very simplistically they can see that the antibodies in lupus seem to block the glucose from getting to the part of the brain that is short term memory. So lupus can stop that part of the brain working, as it doesn’t get its fuel. I’ll post a link to my original post about it, in case it helps. He told me there was no point in carrying out a PET scan of my brain, as all lupus brains appear the same. It’s a relief to hear that there is a very physical reason for my brain fog and it’s not “all in my head”. I hope this has helped. I had never heard about this or read about it, so me and my family were fascinated by it.
But of course I’m not going to storm into one of my appointments and say “I have read” 😂😂😂 guaranteed look of death x. If you can repost the link, I’d like to go back over it. Thank you xx
Know what you mean 😂, HOWEVER we can do the porridge clinical trial at home, oats are supposed be one of the best carbohydrate metabolisers around (slow conversion to glucose)...........though with hundreds of years of R&D in Scotland, uh.....better stop right there before the SNP complains! 😂 xxx
Thanks for sharing Wendy, bit of a lightbulb moment when I read your post....DO start a post with that, it's a fascinating insight and there is some research on the subject for other autoimmunities (it's never lupus, is it...?)! xxx
Paul, thank you so much to you and Dr Wincup for taking the time to share and explain his views. Obviously rheumatologists differ in their ideas about fatigue but he sounds like an excellent rheumatologist who listens to his patients and has an open mind - and accepts that just not enough is known about it to make assumptions!
A voice of reason. So glad to have an intelligent and experienced doctor counter such a simplistic view of fatigue. Your efforts are much appreciated! K
Thanks ever so much Paul_Howard Please pass on thanks to
Dr Wincup for taking time to reply about this His comments are very much what I believed was the case, it was so disheartening to see the video just the title was so misleading. Thanks ever so much
Hi all! So the 13th INTERNATIONAL Lupus Congress just wrapped. I browsed the many topics on their agenda. Fatigue sucks, but for all of us and others out there, I was excited to see that FATIGUE specifically as it’s OWN thing was represented. I’ll post a screen shot but you can get more info if you go to Lupus.org. Small wins!
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