Im sitting here waiting for the dna test,
Tock my 3 kids to 3 different schools, ok I drove, I've only been awake for 3 hours, but my god.....I'm sooooo tired, I have to pick my mum up and sort out out my aunt funral, but really I could just go to bed 😭😤😡
I feel like I've had a good month without this fatigue, now it's coming back , needed a nap when I got home from the school run yesterday
Any tips lupie people, really need to be alert
Appreciate it
Xx
Soooooo many would say listen to your body, rest and all that jazz but it sounds like you 100% don’t have that option especially with 3 kids.
Some things I’ve tried and I think work, some don’t and some may make you feel crappy afterwards.
1. I take SAM-e. It’s OTC and stands for s-adenosylmethionine. It is a precursor to serotonin and DNA methyl donator. Also helps with depression and joint pain per recent studies. DO NOT USE if you take an antidepressant.
2. I was prescribed adderall long long before my lupus diagnosis for adult ADD (first clue lupus was a comin aka brain fog). I still take 5 mg here and there like once a month for things that I absolutely cannot miss and need to be there for. Takes me about 2 days to recover if I use it.
3. Lastly I take vitamin B, vitamin D and folate regularly as they were on the low end when diagnosed. This helped some but minimally.
Make sure to get your thyroid and glucose checked as these may also contribute to fatigue. My condolences for your recent loss. I hope some of these suggestions help. Short of a line of coke, lupus fatigue blows (no pun intended). The only thing that 100% is guaranteed to help is to embrace the sloth and ask for help when needed!
I understand that Sam-e is not found in foods but does increasing amino acid food sources help our bodies produce sufficient amounts of Sam-e naturally. I am not a supplement user generally and always try diet changes first. Would animal products, milk, eggs, fish and liver at recommend amounts be able to help our bodies naturally make proper amounts of sam-e?
Maybe but truth is...I don’t know. Honestly I started using it for migraine prophylaxis a couple years ago and it worked. Kind of like some swear by butterbur. I only use it on and off but typically will use it around my cycle. Then I started doing some reading and realized that people with lupus have undermethylated DNA leading to T-cell dysfunction. Sam-e could help fix that so I guinea pigged up.
hindawi.com/journals/jir/20...
I don’t get any side effects from it at all. It definitely helps with joint pain, energy and boosts the mood a little. I actually was discussing possibly using it in cancer patients with our pharmacy before I left work. Since it was so benign, we naturally make it ourselves and has minimal interactions with other meds I thought it perfect for chemo patients.
Hi Crazyfamily ,
I'd like to advise you to take caution if you read Jmiller623 's comment and always discuss any alternative/complementary or over the counter treatments with your doctor before starting them. Your doctor can warn you about any potential adverse effects or interactions with other medications you may be taking.
Fatigue is a very difficult problem that most people with lupus experience. We have an article on our website which includes some information and advice that may be of interest to you - lupusuk.org.uk/managing-fat...
Hi Paul,
Thanks for the information! Question to you...this website doesn’t talk about chronic active EBV. Any advice for that? Many people with lupus are set off by EBV infection gone unchecked. It is sometimes the first sign that someone’s immune system isn’t up to snuff.
Would you by any chance have any information on this? I know this can also cause extreme fatigue. However there is no way to get rid of this virus. You live with it for life and it can cause a lifetime of crippling fatigue for lupus sufferers.
Thanks,
Jmiller
Hi Jmiller623 ,
You are correct that the epstein-barr virus (EBV) is suspected to be a trigger for lupus in some cases. Quite a few people with lupus report having Glandular Fever during their adolescence and it being the start of their symptoms. The only advice I can give for coping with this is a link to the NHS website - nhs.uk/conditions/glandular...
That’s interesting! I had glandular fever when I was 18. Just been diagnosed with lupus but have had other autoimmune diseases crop up over the last 20 years.
Hi. Very interesting! I was Dx's with glandular fever in my early 20's and this was possibly the start of my 'journey'. In my case, the disease was diagnosed by a typical E-B blood picture (abnormal monocytes, high lymphocyte count etc) although I didn't produce Epstein-Barr antibodies. I wonder how many people can relate to this. Btw, I am sero-negative for both lupus and Sjogrens.
I had Epstein Barr virus 🦠 I had stage three precancerous cells of the cervix when I was 19 ..
And pcos which is new.
And b12 deficiency pa
All apparently linked to autoimmune xx
I also have high titre gastric parietal autoantibodies and low B12 levels - now corrected with B12 injections - but no official dx of pernicious anaemia. xxx
Oddly, people with lupus and EBV problems have a high prevalence of inability to produce anti-EBNA (nuclear antigen) antibody. Their EBV-VCA (viral capsid) stays high like it never rids the infection. Scientists believe anti-EBNA may be necessary to keep the virus in check. I think something just isn’t right with the way our immune cells communicate with one another. Feels like our immune system is always on edge ready to overreact to any small offender.
I always thought it’d be an interesting large scale study to see what EBV antibody patterns exist in those diagnosed with lupus. But since there is no cure for EBV, it’d be hard to get funding just for the knowledge.
I believe EBV is also linked to development of lymphoma. I believe the virus connection is well established but cause vs correlation might not be. Most people are exposed to EBV but not everyone gets sick. It might be that specific DNA types are more prone to the virus than others and those same people maybe more prone to lupus. I know cancers are also seen as precursors to lupus diagnosis, as well as metabolic syndrome, PTSD, physical traumas and other inflammation aggregators.
Had 2 PET scans because my nodes were so big, night sweats, weight loss, the whole nine. Both were negative. I’ll probably get lymphoma at some point if I don’t already have low grade. Good news is hydroxychloroquine has been shown to reduce this risk with statistical significance. Hoping it buys me many decades of a cancer free life.
thanks so much for this info. Do you have a link to a publication that I could give to my rheumy? thanks again
Paper about how EBV induces lupus hjdbulletin.org/files/archi...
An interview about effects of hydroxychloroquine in lymphomagenesis. rheumatologyadvisor.com/hom...
I’ve actually seen Dr. Petri as a patient. She swears by hydroxychloroquine. Pretty much told me it’s the only med that truly reduces flaring in her history of practicing. I hated taking it but I must say...she was 100% right in my case. My hematologist/oncologist (who ordered PET) also said I need to take it to prevent lymphoma. He runs blood cancer center where I get care.
It is very interesting what you are writing but I don't think I have the knowledge to fully understand! I do, though, have some personal experience which might be of interest to your questioning of the role of ebv and which is also relevant for Crazyfamily's tiredness question - something I really sympathise with as I have many offspring!
I am diagnosed with autoimmune problems probably uctd and/or sjogren's. My ana is greater than 1:1280 but my ena panel is negative. I have some immune deficiencies as well as autoimmunity and so see an immunologist in the UK as well as a rheumatologist.
At an appointment this year I was describing to the immunologist how my lymph nodes flare up and down and can be painful. I generally feel more tired when this happens and some of my typical autoimmune symptoms flare. Sometimes my throat is sore. He said he thought I must have had glandular fever when younger and wanted to run blood tests. The results showed extremely high Ebna antibodies (100 x greater than normal) and Vca antibodies ( about 25 greater than normal) which is consistent with past ebv infection (even though it was never diagnosed at the time). My ebv Vca result was normal.
The immunologist told me that anytime I felt my lymph nodes flaring and or a sure throat I should try to rest as much as possible because the glandular fever was sort of "reactivating" and causing my immune system to flare. He said it was like an early warning system which I should not ignore - although he recognised that it was sometimes difficult to rest with teenagers in the house!
I don't understand everything about the relationship between autoimmunity and ebv but I am going to ask more at my nest appointment in October. Perhaps you might have some good questions for me to ask?
Again, it was really interesting what you wrote although I think the point you were making was different.
Best wishes
Pb.
Oddly I never got glandular fever. Heterophile positive about 10 years ago with inguinal adenopathy. No sore throat. They had no suspicion for lupus at this time. Said I had mono with enlarged liver/spleen, atypical lymphs and low platelets on blood smear. Typical of mono. Went about my life. Pericarditis a few years later. Still no suspicion for lupus. Took pneumonia and a heavenly bluish tint to my skin with livedo before anyone took notice. EBV VCA titers were through the roof this time round. EBNA was negative but should be positive with old infection. This is odd and I think hints at lupus development. Whatcha gonna do. Stayed quiet because I didn’t want to be discriminated against.
I think the question that perplexes me most and you may want to ask your rheumie is if EBV infection precedes lupus or does lupus make you susceptible to EBV. Maybe both? EBV is a super stealth ninja virus. Not only does it live in your immune cells for life, it also propagates and hijacks your resources to multiply. Is there a threshold at which point the EBV just gets out of control....at which point you’re headed towards B-cell lymphoma. Much of my genetic research dealt with these mechanisms in depth but it would be interesting to here a rheumies take on it.
Thanks for the link to the paper. Of interest - maybe - I have chronically low titre IgM. Would this fit the theory of lupies having weird immune systems?
Hi Megs. I’m not sure about that to be honest. There are many things that cause low IgM. I don’t know if it’s common in lupus but it might be worth talking to an immunologist about it.
There is a supplement called Inositol and it accompanied with Choline in H&b. You can read about it. The main benefit is that it gives you energy and my mother swears that it improves mood. I think you will get good results with it and as your. OST makes The substance naturally it is not harmful. Do take the max dose and also check there is no contraindications.
It sounds like life just got really busy and overwhelming again after a nice summer break. Three kids with differing schedules, a funeral to plan, health tests, and a parent to care for all raise stress levels greatly. I am always more fatigued during times of overwhelm. The feeling of needing to run away is often replaced with the feeling of needing to sleep for me. So I find yoga, a nice walk, meditation really help elevate my stress and by so doing have lessened my fatigue. Try to carve some calm and stressless moments out of each day for yourself.
I am sorry about your loss. Xo
Sorry to hijack your post CrazyFamily. EBV could have me talking for days. I hope some of the suggestions we’ve all offered are of use. I’ll make this my last post on this thread. Hope you feel better soon and you get things situated with your family. Sending many hugs your way! ❤️
We had a fight because I'm so tired
Sick and tired of being sick and tired!
Tired all the time 
So so tired...
