Hi everyone. I notice when my inflammatory levels are really high and my body aches even more than usual I experience the following:
1) depression and anxiety
2) complete exhaustion and can sleep for two straight days only to wake to use restroom
Does anyone else get this way?
Yes I get like this too, then I can also go round the clock with insominia so bizarre
yep....i get the same way. it's almost like i hibernate at times and then other times i can't sleep at all.
Depressive mood and extreme fatigue are characteristic of many autoimmune diseases so are likely to appear when you are flaring because the autoimmune process is very active. There has been work linking depression and autoimmune disorders.
thank you! yes, i did read the same thing after posting this...they have linked depression to inflammation surprisingly and it makes sense to me now. I just hope to get my inflammation under control at some point...it's been elevated for four years now and the only thing that's helped me greatly is high doses of prednisone which my doctor is now refusing to give me even though it's been helpful. i'm on methotrexate in high doses and hate it. want to put me on stellara in addition to that for my autoimmune psoriatic spondylitis but it's going to cost out of pocket 3500.00 per month so we are looking for a foundation to help. i can only pray that someday i will get some relief. until then, i'm a fighter.
May not work for everyone but try magnesium supplements/ checking your magnesium levels?
It is always best to try and get any nutrients you need through diet rather than supplementation. If you are considering supplements, it is important to discuss them with your doctor first. Magnesium can potentially have adverse effects on people with bleeding disorders, kidney damage or heart damage. It can also potentially interact with a range of treatments including some antibiotics and blood pressure medicines.
Agree - I meant to say I eat a high amount of all kinds of nuts, seeds etc which are rich in magnesium.
Good to know, I take 400mg daily WITH DOCTORS approval. It helps with cramping, if I miss a dose I can feel it within hours!
You are describing me at the moment!
I manage to avoid the depression and anxiety though luckily, I just feel dull.
My joints are very inflamed, I'm toying with the possibility of popping along to outpatients for a steroid injection, but I have been very successfully losing weight and I don't want to spoil that, so just limping alone at the moment with extra strong pain relief
yes, i do the same.. just deal with the pain as best as i can to avoid the awful prednisone weight gain. best of luck to you! i know it's difficult but we will win somehow...just keep your head up.
Yes. Various stresses causing a bad dip in mood are making me retreat from eveything at the moment. A stressor yesterday created a glowing butterfly rash, too
This exactly what I go thru when my inflammation levels are extremely high. This has been my worse week. Aches under my left arm knees, severe nausea, itchy scalp. Hair burning on center of my scalp and leaving a bald spot in the center of my head. Thank God I have dreads cause I can casmoflauge my bald spot. I've been sick for 3 days now. I always remain strong and live my life to the fullest. Stay strong. Only the strong survive. We have lupus but lupus will never have control of my life. My life mattars lupus life doesn't!!!
Yes I get the same but there are several things you can do to help. I have noticed after some experimentation that regular swimming lifts my energy and lowers my pain levels. It sounds like it would do the opposite, but it makes a HUGE difference. Also to depression.
The other is to follow an anti-inflammatroy diet (and eat meat at least twice a week) I am not obsessive but I avoid Gluton, sugar and dairy. That really helps with aching, brain fog, depression and aching pain everywhere. I eat lots of green veg and red berries (high in antioxidants) and take a Vit D spray (in mouth under tongue). I have gone on and off the diet etc and know now that this helps reduce the misery of it all.
All the best
Nixta
Yes, when the exhaustion really hits it is amazing how long I can sleep for. Glad to hear many others speak of similar, I was 1/2 convinced I was just lazy.
yes!!! everytime i get stressed my inflammation gets worse which lands me in bed for days which then comes severe depression and anxiety...i think
being sick having no control over when the severe inflammation is going to strike and how long i am going to be down may bring on the depression and anxiety? Not to mention the lack of support around me...i feel like i am being judged as lazy or it is all in my head and i just need to get out of bed and get going?!...and yes the fatigue is so severe i can sleep for days usually too weak to eat or drink and end up dehydrated...stay that way mostly...
Oh I can relate! I get stressed...it gets worse! My spouse just calls me lazy!! It's not that...oh I am sure maybe 30% is! But usually if I have things to do, I DONT fall asleep for HOURS! And wake up still tired! When he calls me lazy it stresses me out more...which makes me sleepy! Just a devilish cycle
Yes, I have felt like this many a time. This exhaustion and not being able to motivate yourself and feeling like you want to hide away from the world.
My first flare went undiagnosed and led to me resigning from my job. I found I was struggling with life and work etc. I had 3 very young children too. I found myself locking myself in the toilet at work and crying. I couldn't face going back to my desk and seeing people. The slightest thing going wrong would set me off crying. I had no idea what it was until years later and when diagnosed was able to look back with hindsight and think to myself, I had lupus and that was a flare and I was suffering from anxiety and depression. I regretted for ages not knowing, if I had known I could have just got a doctors note and taken some time off and kept my dream job. Anyway, now I can see that it wasn't mean to be.
I remember when I was finally diagnosed in 2013 and experiencing a big flare, I still had to do the school run etc but didn't want to speak to people, even good friends, so would leave it until the last minute to get out of my car and pull my big coat collar up around my face, then I wouldn't have to make eye contact or speak to people. i was tearful at times with the thought of people trying to speak to me. I knew it wasn't me at all. I am sociable and have a lot of good friends.
So I know know that when i feel like that, anxious and wanting to hide from the world, it it the lupus and often related to a flare - big or small. I take time out. I rest at home and in bed when I need to. And I'm not hard on myself for doing it. I stay at home when I need to and my body tells me to. And when i feel good, i go out and meet my friends. I guess it's a kind of acceptance and hindsight. There are good times and bad.
So rest up and don't be hard on yourself. Do what your body tells you. Plus discuss it all with your GP and specialist. Do you have contact with a lupus nurse?
Best wishes.
Wendy
Sorry to hear so many people have all the same issues I have.It's been frustrating.I now have Epstein Barr Be careful with prednisone,not only do you gain weight it does many other physical things to your body and losing your mind.I will not take it anymore.
Praying also is helpful.
May God Bless you all.Sending prayers and love.
Yes! I have been in a flair for weeks. My chest also has infection, I believe that's also making me sleepy!
Wow...I do see a connection between inflammation and our minds! Inflammation , I don't believe, is choosing which area of our body to attack. It attacks them all but how our symptoms manifest determines the type of autoimmune disease. Think about yourselves for a moment and I bet you that each one of you can tell me that at some time during a flare you had a dry mouth, or rib pain upon breathing, depression, extreme fatigue, insomnia, headache, nausea, strange rashes, fluctuating vibrations, or even where the root of your hair attached to the scalp pain. They really need to figure this whole autoimmune thing out because there's a growing number of us that are dying from this "different but similar" syndrome...the autoimmune syndrome
So true...eg when my infant onset lupus diagnosis was recovered in my mid 50s, I'd had 40+ years of lupus + early onset secondary Sjogrens autoinflammation barely controlled by conscientious lifestyle management + daily prescription NSAIDs & opiate analgesics (+ laterly numbing bilateral spinal facet joint denervations). My medics were thinking my aching muscles + joints & all my other typical multisystem signs & symptoms were down to inflammation due to injuries caused by a fall on head from height at 7 years old. Over the decades i'd been given steroids to resolve various emergencies, but the only immune dysfunction they tested me for was MS. Of course, during those 40+ years, I I became deeply depressed, and went into therapy....which helped me manage
Anyway, the brilliant lupus & vasculitis clinic that figured out my lupus in 2011, says that autoinflammation is attracted to ANY site of active inflammation in the body...which explains why the NSAIDs & opiates didn't fully control the chronic pain & inflammation associated with the injuries caused by my childhood concussion & spine accident: i.e. Lupus was at work in the injury areas too. The proof: once I was off the ineffectual NSAIDs & opiates, and on my full daily combined therapy lupus immunosuppressant meds cocktail, any remaining spine injury & concussion-related chronic pain signs & symptoms damped way down and, so far, has never flared up full again...and this includes issues related to brain function (I have a chronic complex of neuro cerebral signs & symptoms) and my depressive tendency + all my other multisystem suff
GREEAT discussion lotsofissues: thanks for getting this going!
🍀🍀🍀🍀 coco
Yes!
Hi, I think many of us have this because the white blood cells that fight infection and cause inflammation are cytokines. Unfortunately, they tend to hang about after the virus or bug has gone and there are studies that are looking into the affect they have on the brain. They could cause depression or insomnia. Also whilst our bodies are in this constant fight stage it takes it toll, leading to physical and mental fatigue. For the auto immune this may be a constant battle and then with rises that are then seen on the blood tests that doctors love so much. All the best.
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