I’ve been meaning to ask, does anyone have this happen to them/ is this a lupus thing:
Where you’re fine maybe all day and then later in the day you may get fatigued and then joints hurt ( and calf muscles) and maybe a headache that turns into a migraine? With joints, no redness but maybes some swelling? And potentially neuropathy intensity?
And the next day fine or not fine?
With Advil or some anti- inflammatory helping some.
Sometimes these last a half day or more. Is this lupus? I try and hit the anti- inflammatories and cbd balm along with migraine meds fast; is this Lupus?
Yesterday I didn’t drink much water but didn’t eat anything out of the ordinary. This just seems to be happening more often and started way before Liz came home with Covid. I am stressed but don’t think stress alone can cause all this mess? I know stress sometimes causes my migraines but I wasn’t particularly super stressed yesterday.
Thanks
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JennaShi
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Yes, this sounds like a run the mill autoimmune thing. Some days are good, some are bad. There is no rhyme or reason. Some purport to know what their exact triggers are but I am not so lucky. I wake up everyday wondering what the day will bring and unusually know right away based on how bad my back pain is on first rise.
Something to look into is the spoon theory. We have a tendency to push everything we need to do in small periods of time which wipes us out. If we space things out throughout the day with a limit, it helps keep you from pushing during the day only to be winded at night. Each activity costs spoons and I give myself 12 spoons a day, 15 if I’m in a really good place.
It’s definitely not a good feeling, and I’m sorry too that days are random and hard. I guess symptoms don’t always fit the mold (red, hot and swollen to the touch joints, as opposed to slightly swollen and suddenly painful) and thought that the Hydroxide would take care of it but seems after time it too isn’t helping as much; maybe it’s due to the stress of life this season. How have you found ways to cope mentally? Yes I have heard of the spoon theory and it makes perfect sense. I guess it will be good to reevalute daily tasks and life. Thank you for responding to me. It has been wonderful to learn from you all. Have you taken benalysta? This is something that came recommended from from the rheumy I see for Fibro.
I don’t get swelling of my joints like I did in the beginning. Hydroxychloroquine took about 9 months for me to get full effect. If I stop it, my joints are the first to hurt. There are other medications that work better for arthritis like methotrexate.
I have not tried Benlysta. I don’t think I do too well with further immunosuppression beyond steroids. I’ve reacted very poorly to azathioprine and CellCept. I’m on IVIG and this seems to help with a lot of my symptoms which are neuropathy related.
To help cope mentally, I have a counselor LCSW that I see monthly. It’s cathartic to go over things that bother you and help work them out/resolve them in a healthy manner. I don’t like to dump all of my woes on my husband and family. Have to keep them in good spirits as they take care of me when I need it, which is no easy job. 😂
Jmiller623, Do you feel like it has made quite a difference in your life? That’s amazing that it has stopped your joints and you feel a difference. I too feel that, except for lately. It sounds like you’ve tried different things and they haven’t worked so well. Do you mind if I ask you what kind of neuropathy you experience and how they decided to give you IVIG? IVIG is something I’ve been curious about for a while but don’t think I’d have the courage to try it as I always think about others who are far worse than I, not to mention insurance headache. I’ve never heard of Methotrexate but will ask when I see her.
I think that is a great way to deal with your problems. Do you ever feel that there is a lack of empathy if you don’t talk about it with them? I see my husband as a team mate, but ever since being more pain, I do see he closes off a little more. Do you find your family dynamic is much better. There are so many more things to consider in life. Have you been able to get past all of what comes along side of these health issues after talking to you LCSW?
Plaquenil has made a difference but it doesn’t really help with fatigue which is my most debilitating symptom. I get cranial neuropathies… droopy face, uncoordinated eye movements with blurred vision, swallowing difficulties in addition to SFN things like dysautonomia, parasthesias and esophageal dysmotility.
My husband has been fairly supportive. I suggest lupus offers and families read this book when transitioning from complete functionality to disability. Coping is a whole other beast itself.
I am happier having left medicine. I was working with lupus for a long time before diagnosis. Signs were there but no one picked up on them. I just thought I was overworked and stressed. I will never get over what happened to me but I have learned to embrace what faculties I do have. I have resolved to become a patient advocate at this point in time. I do what I can with what I have and reinvent myself as each day passes.
Jmiller, That is great that you can see a difference and notice it’s helping some of your symptoms. I do have hope that you will find something that will bring relief with your fatigue soon and find it unfortunate that Plaquenil didn’t touch this symptom for you.
When you mentioned your neuropathy symptoms and I read them, it blew my mind to think how complex our nervous system is is and how many nerves (and different types) it takes to have our body function well. Your neuropathy symptoms remind me of two things:
1.myasthenia Gravis because the symptoms sound similar to yours. I apologize if this is to far being nosy, but have you ever looked into MG? It’s quite an interesting one to learn about nonetheless.
2. This lady who was a patient on the show Diagnosis, I believe it was called. Have you seen this show? It was on Netflix and the host was a well known Dr. from Boston and she would ask the crowd to create a video and send it in with their suggestions. She had some similarities to your symptoms and they would check her for a stroke but nothing showed up. It makes me wonder if the nerves in her brain weren’t working. They didn’t seem to find an answer for her, except that sue met with a young woman and her dad and the girl claimed to have been experiencing the same thing and it being psychological I think and went away. So sad to think that in general there isn’t more awareness to the fact that issues can arise with these nerves as well and there isn’t more awareness to this fact. I’m glad you’re knowledgeable and aware of this though in comparison. Will write more soon
Hey Jenna. I have been tested for MG at the beginning of all this during my droopy face phase. Lupus sufferers do get cranial neuropathies. Pretty sure I have true blue NPSLE. It isn’t common but it happens. Seems more common in people with persistent aPL. Some MS folks are also aPL positive. I have a lot of findings that suggest small vessel ischemic and nerves are typically fed by the tiniest blood vessels. Not surprising they are the first to go.
Hi Jmiller, that’s great that you got tested and have been able to rule it out. That must’ve been scary, experiencing your face droop and not knowing what was causing it. I feel like I’m learning so much through everyone in this group; never knew about cranial neuropathies and their relationship with Lupus but have heard that people with MS are commonly mis- diagnosed and have in fact APL. My mom had ms and seizures and sometimes I wonder. I’m so sorry, that has got to be hard but also very interesting. I agree, it makes me wonder if this happens with the small nerves and skin, they are also one of the firsts to go when things aren’t working right.
Sometimes for me simple barometric changes set my system off and often caused headaches or vertigo. It is sometimes so hard to predict the rhyme or reason for our symptoms. I do hope you feel better soon.
Ah, do you get vertigo often? So do I! Well I don’t as much since being on Hydroxy but wasn’t sure where that fit in. So strange how are body reacts. I know stress can help make things worse for sure.
I was diagnosed ten years ago with meniere’s and I had a live long history of migraine with a scintillating scotoma. However, I no longer get the scotoma and vertigo has been stable after I had a hole in my heart closed after strokes so I think the vertigo was likely MAV (migraine associated vertigo).
I now have the symptoms you describe everyday. I often get an escalation of fatigue and pain after lunch and have to lay down. I get up in the evening and try to excercise and stretch. I hardly ever have "good" days anymore. Maybe an afternoon or a morning if I'm lucky but not a good day. Keep on keeping on though.
It sounds like you are maybe overstretching yourself during the day. As has been suggested in this thread, the spoon theory looks like a good plan to follow. After some strange eye occurances a few weeks ago, which may or may not have been mini Tia's or aura without a migraine I have been drinking at least 1litre of water as well as my usual hot drinks. This was advised by my optician😊.
JennaShi you bring up a topic that I’ve Stressed about for a long time so thank
You. I need a discussion on this. Sometimes I have the flare or bad days figured out. Then
I don’t. I’m flaring now. I wake up and every
Knuckle hands and feet hurt and as their is not a lot of collagen/fat left on them Walking to the coffee pot can be killer. After my first cup of coffee and hydroxy
And few other goodies I slowly feel better.
But I’m exhausted. So I may have to go back
To bed. My flare this time was brought on by stress. I think I said in another post, my
Body doesn’t discern between rush
Of excitement or exercise or real mental
Or emotional stress. It was the simple
Joy of taking care of my new infant granddaughter for 10 hours after I had had
Some viral illness for 10 days. I should
Have said no to taking care of her but I
Could not. Now I’m in a very bad state
And feel very down like it is permanently
Planted. How can I ever accept that I’m not capable of caring for my grandchildren? It is the biggest sorrow in this terrible disease for me. Unbearable. I just need to get thru this and try to get my so called life back.
😟. I’m sorry I think
I’ve digressed. Yes yes yes. Every day
Can be different. Trying to figure it out
For me is keeping a diary of my diet, activities, meds, supplements, emotions.
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Just want some opinions
I just want to say... 
Just diagnosed Lupus today 
