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  • Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain...
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Living with lupus

Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain...

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Unregistered member

05/22/2019 at 8:31 PM

Hi there, 

My sister a Id Ihave had very similar symptoms. Mine started over a year ago. Recently my sister has come across information and doctor's who think she may have lupus. I am wondering if anyone with lupus has experience similar symptoms as we have and if there is a really chance that I may have it. 

We were first allert to there being a problem when I started having, what we think, is non-epaleptic seizure's. Before that I had experienced joint issues and stuggled with spells of dizziness. After the seizure showed up ,things progressed into nauseousness, headaches, clumsieness, mood swings, joint Pain, changes in vision, extreme fatigue (sometimes so bad I can't stand), cognitive imparment, dizziness, and the seizure's. All of my symptoms can come and go quite quickly. I often have a bad week or so and then things will be good for a while before flaring back up. 

I am skeptical of it being lupus because I have not experienced any rashes and from what I can tell no fevers either. (there have been times where I felt sick enough i had thought I had a fever and it turned out i didn't) 

What do you all think? Has anyone else experience something like this? It can be incredibly diblitating. Should seriously consider lupus as something to check up on? 

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06/16/2019 at 2:46 AM

In January I started seeing a chiro who was also a nutritionist.  She pricks your finger and looks at your blood under a microscope.  I’d been trying to fix my gut since January with food and supplements that she recommended. My joints have hurt off and on for a few years.  During this time my hips would ache so badly.  I had burning in my joints.  My fingers are always cold.  I’ve had headaches for 20 years and no one could figure out why.  They just get worse and worse.  I’ve been managing my pain with chiropractic treatments and massage and it worked relatively well until January when I started taking all the supplants.  The chiro has my blood work done and My ANA was 1:8.  The chiro who by the way has lupus thinks it’s lupus.    There are so few rheumatologists that I finally got into one last week.  He only took about 10 mins with me and decided I had trochantic bursitis and possibly fibro.  He actually told me to look on the internet to figure out what I can do!  I went back to the nutritionist and she looked at my blood again(she had this really cool program where She pricks my finger and looks at the blood.  She thinks things are going in the right direction but she swears that I have lupus.  She says that I need to heal my gut first before I can heal adrenals and other organs.  Apparently I’m in the middle of a huge flare and it’s good for a few days and then my hips start in again.  I have roaming joint pain. One day it will be in my thumb and then the next maybe my elbows or shoulder and then neck and hips.  It’s so random.   The chiro is trying to get me into her rheumatologist.  I’m hoping that doctor might actually listen.  

Natural remedy gurl....I’ve been taking the hemp oil for 2 weeks.  It has not worked nearly as well as the standard process hemp pills.  

Hang in there everyone! 


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-16 02:46:13
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Unregistered member

06/17/2019 at 10:01 PM

I have had severe leg pain for a month. My rheumatologist had made me an appointment for a new MRI to see what has changed in my back. The pain got so bad that I went to the ER last week. I have dealt with so much pain that I don't like going to the ER. They treated me like a drug seeker. I looked at the doctor and said "My pain is at a 12 on your pain scale. I have my own pain meds, and I don't want anymore pills."  All I wanted was to make sure I was not in any danger from blood clots. Then I called my doctor, and she immediately orders a new MRI. Go figure. I so hate life with lupus, disk degeneration, and nerve damage!!!


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-17 22:01:58
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Unregistered member

06/19/2019 at 1:35 AM

@Rob_M hey friend, I too am in the middle of a flare and have a virus that feels like strep throat, cough, just feeling yucky.

What kind of CBD oil are you using?  

I must say, I bought a bottle of some green Kratom.  I could definitely tell a difference as I ran out yesterday and will be getting more tomorrow.

I have used the CBD oil but I think I may alternate between the two.

I hope you feel better.  I am actually taking care of a family member who is very ill, so not on here very much.

God bless 🙏


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-19 01:35:19
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Unregistered member

06/19/2019 at 2:03 AM

Natural remedy gurl what is Kratom?  Never heard of it.   Will definitely check it out.  I used hemp oil pills from a company called Standard Process.  They have very high quality products.  Amazon carries some of their supplements but this one apparently just recently came out.   I got the oil form from my chiropractor and taste is bad and I don’t like it.  Yes I can live with it but it’s definitely not a favorite.  I feel like the pill form works better for me and I’ve had more relief from it.  I also just tried a new technique from a massage therapist that wiped out my hip pain.  I’ll find out what it’s called and will share with you.  Hope you feel better soon! 


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-19 02:03:06
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Unregistered member

06/26/2019 at 6:56 PM

@Beckisue hey friend I hope you are feeling better.  What was the company you used for the CBD?

Sorry it has taken me so long to respond, in a flare and am at my 92 year old moms house taking care of her as she is ill, but am hoping she will rebound in a couple weeks.

Have you tried Kratom tea?  I have been using the green Kratom powder maeng da is the kind I purchased.  I have been giving it to my mom for energy as well as myself especially being in a flare and being a caregiver.  Let me know about the CBD, I'm curious.

God bless and talk to you soon 🙏.


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-26 18:56:43
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Unregistered member

06/26/2019 at 9:35 PM

@Rob_M hey there Rob, I hope you are having a wonderful day.  Mine is on good. 

Kratom is a natural plant that helps with pain, cronic pain, anxiety, energy and overall well being. It also influences the dopomine receptors in your brain.  

I think that the Kratom group is still on here and that is where I first heard of it. I have since done quite a bit of research and will be meeting with someone tomorrow that knows way more than I do so will definitely share what I learn.  I have hip problems and my Dr has ordered massage therapy.  I'm hoping when I get home that I will be able to start right away.  You have peeked my interest with your therapy.  Can't wait to hear more.

God bless 🙏 and have a blessed day.


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-26 21:35:01
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Unregistered member

06/26/2019 at 10:39 PM

@Beckisue hey girl I'm so sorry for what you are going through.  This disease is not for wimps and having said that, how can I best help you?  If you want to talk DM me if you want to talk privately otherwise, if you just need to vent, come on, every feeling you are feeling is real and valid.  We are all here to help.  I pray the rest of your evening will be better.  God bless 🙏.


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-06-26 22:39:02

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08/02/2019 at 4:03 AM

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mvn481

Last activity on 09/02/2023 at 12:01 AM

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70 comments posted | 25 in the Living with lupus group


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@naturalremedygurl‍ how is the Kratom helping you with the pain compared to CBD? Does it help one vs the other for anything else besides pain one better than the other for you?

@Karina‍ I am sorry I am late to your post.. but the seizures are something that should be definitely looked into and do not seem to be an all common prominent feature of lupus... I would see a neurologist if you have not done so already. Do you have any update with your condition?


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-08-02 04:03:53
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08/08/2019 at 6:30 PM

Hey friends 🙌, I hope y'all have been well since our last conversation.

My mom who is 92 got very ill so I went down to help her.  All her blood work was fine, her stomach specialist said all is good.  She suffers from diverticulitis.  

My doctor recently put me on the List Paleo Diet so I tried it with my mom and we soon found out that she can't eat any kind of grain.  (If you get a stomach ache after eating grain, you may want to get checked for Siliac disease. It's a blood test and is heriditary disease.  Since I have Lupus, we are having her checked.

I also put her on white Kratom.  In my research I found out that Kratom is from the coffee plant.  There are 3 kinds of Kratom.   White Kratom is for those that are okay inside and not a nervous person.  I bought her the Hulu brand as I know someone that I trust who uses that brand and it works for her.      I use the green and red and have not had a problem with either.

I also introduced her to CBD for her back pain and is now doing great.

I use as many natural products as I can because I have been through the mill with man made meds.  Now having said that I still have to take man made meds but have been able to cut them down to a small amount compared to what I was taking.  

Everyone is different but for me and now my family we look into a more natural approach to healing and better health.

I would like to say that food is medicine.  Pesticides, GMO, gluten, are all killers for me.  I have had to go to organic, gluten free, non GMO and anything that is not whole, natural and clean.  It's expensive to do this but like I told my mom, what is your health worth to you?

I'm back home now and dealing with a huge flare but I know it's temporary and I will get better.

For those that are suffering with a disease that doesn't have a cure, I feel sometimes like I literally can't go on and somethings think it would be better if it was my time to go... and then I realize I will never be given more than I can handle and quit my "stinkin thinkin".  I try to only have positive thoughts in my head no matter the situation.  We have control over what we think and for me, since I have so many issues, I embrace what I can control and don't worry about what I can't.

I hope you are all well and good.  Thank you for this conversation and I hope I was helpful.  

God bless and have a wonderful day. 🙏


Anyone else have similar symptoms: joint issues, dizziness, seizures, headaches, pain... https://www.carenity.us/forum/other-discussions/living-with-lupus/anyone-else-have-similar-symptoms-joint-issues-dizziness-seizures-headaches-pain-1020 2019-08-08 18:30:06
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