Posted on 5/11/19 7:58 PM
I have huge fatigue and wish I could get rid of that and the pain during the flares!
Posted on 5/11/19 11:04 PM
Confusion fatigue with muscle and joint pain
Posted on 5/14/19 2:25 AM
Posted on 5/18/19 5:52 PM
The worst is the hip pain that starts the day following the migraine. I’ve started tracking the barometer to see if there’s a correlation. I’ve started CBD oil and it’s helped a lot but I’m wondering how long flares typically last? Is it possible that I’ve been in one for the past 3 months? I seem to get better and have no pain for a few days and then the headache and muscle/joint pain. I’ve also completely eliminated sugar, gluten, wheat, corn & dairy from my diet. So basically I’m eating tons of veggies chicken and a small amount of fruit.
Posted on 5/19/19 12:13 AM
Fatigue and itching of lower legs and feet
Posted on 5/20/19 3:18 PM
@Rob_M hey there hope your day is going better today. You mentioned something in your text that I'm wondering about. As far as the weather? I definitely feel the weather has a huge role in how I feel.
I have migraines; hips always hurt and it never occurred to me that there maybe a correlation between the two.
I do know that citrus gives me a migraine. I also found out that nightshade veggies are not good for me as well as as gluten.
I was also wondering how did you know what to change in your diet? Was something in particular?
Have a blessed day and thanks for sharing.🙏
Posted on 5/20/19 4:40 PM
Natural remedy gurl,
Its really been a process. One of my girlfriends told me to track the barometric pressure. I just started really watching it. So if it gets over 29.8 I normally get a headache. It’s weird. My doctor told me I really need to listen to what my body is saying. So I used to exercise like a madwoman, now if I’m completely wiped out or am aching I don’t exercise. I’ve been working with a nutritionist for about 6 months. We were working on repairing the gut bc of a long history of antibiotics from repeated sinus infections. It’s been a really long process. I know I’m improving but I want it to happen so much faster. One of the things that the nutritionist recommended was taking greens daily. I started making smoothie to get the powder stuff down. It was awful to drink it, but in a smoothie I can do it. Apparently the greens have great healing properties. So for my smoothies I normally do the following in a blender. Kale (usually 3 big leaves), 1/2 to 1/3 of a banana (this covers up the greens), about 1/3 cup of berries, raw beets (I usually cut them up when I buy them and put them in ziplock In the fridge and add about 3 chunks), carrots (just 2-3 baby carrots), frozen fruit of some kind(I’ve been using cranberries bc I accidentally bought a HUGE bag at Christmas and wanted to use them). The frozen fruit gives it an icy feel. I also put in 1/2 avocado. You can use mangoes, apples, pretty much anything. The key is not to use too much fruit bc of the sugar content. Basically my nutritionist told me to cut all the sugar, gluten, corn, wheat, pork and red meat. The pork was huge bc it takes 96 hours to digest so it basically rots in your gut.
I also started diarying on the Flaredown app. You can track your symptoms and puts notes about what you observed and can refer back to it.
Hope some of this helps you! Good luck. Love reading your posts!!
Posted on 5/21/19 7:25 PM
The past couple weeks have been super hard for me. I just recently got diagnosed with lupus and I have so many symptoms brain fog , joint pain , rashes but recently I’ve had chest / heart problems my heart feeling like it’s beating life crazy a tightness in my chest and I feel like my doctors went listening to me. So I would get rid of the heart stuff I’m just still struggling overall but that’s what I would change now. I just feel like no one understands
Posted on 5/22/19 7:08 PM
@Rockee hey friend you are not alone 🙏. Unfortunately we are part of a group of survivors that are on a road less travelled with alot of unknowns. The one thing I have learned in my 28 year journey with Lupus is that we know our bodies better than anyone else so please listen to yours.
I was diagnosed in the early 90's, (symptoms started several years before) in the hospital and was told that the lining of my lungs and heart were affected. I understand what you are saying about your heart going crazy. I went through several years of dr's tests, blah blah blah you name it and it took having a severe first flare that ended up with me in cardiac intensive care to finally find out what was wrong. And this may sound funny or I should say awful, but it finally validated all that I was feeling and going through. It's pretty bad when you feel like is all of what I have been feeling real or is it in my head?
I would feel insulated (and frankly, still do sometimes) when people around me who love me don't understand the day to day struggles that we deal with on the daily. And the fact that a flare can last months... just makes it that much crazier. My favorite comment from others it's well you don't look sick.🤨
I still as I said have those days when I just need to politely change the subject and realize they don't understand my reality. I can't change anyone elses behavior but I can change mine and am learning to just let it go as life is too short.
I, like you, knew there was something going on with my heart but whenever they would send me home with an EKG monitor nothing would show up. UGH
I was in the best shape of my life and finding out what was really happening was very scary as I was a single mom of 2 young boys and all I could think about was what was life going to be like for them!
☹️ 2015 was by far my worst year. I had 2 strokes, a hole in my heart, that was fixed to later learn that I also have a valve problem in my aorta that will require surgery at some point and medication will not help. And broke my back, compression fracture, 50%. Went to therapy with not a whole lot of success so had Kyphroplasty and have not regretted it one bit.
I feel your pain as I'msure so many others on here do as well. Keep your chin up. Now you know what you are up against and can take control of your health by learning as much as you can about this unfortunate disease and what works for you.
This site is so awesome as you will find support from others that suffer with different presentations at different times and how they navigate through their flares and what helps . A helpful users guide and articles full of relevant information that pertains to your specific symptons and lots of guidance and genuine concern.
For me, what's the most helpful is learning how others are figuring out how to navigate their lives in the best way possible.
I have been blessed in the fact that I'm still here 🤓 and I have choosen to live my life for me the way I want to and for me it's with a more natural approach to healing.
Do you have a Rhematalogist? What options are you looking at for treatment?
Life is so fragile and I'm so thankful that I'm not worse than I am and that I have dr's that believe and encourage me in a more natural way of healing. I was on so much medication at one point it was insane so about a year and a half ago I said no to narcotics and some other meds that I just was not comfortable taking and have had success with medical marijuana,CBD and a product called U-Thrive made by a company in Denver. called Prana, it's especially great for the fatigue. Excellent company and offer's natural quality products. I also live in a state where it's legal.
Lastly, you are unique and there is no one else like you. Listen to your body, explore options and research. Make sure you are comfortable with your doctor's and your treatment options and try to live in the moment. I also take at least 1 hour everyday to do something just for me and lastly, find support when you need it. My husband is so wonderful and does everything he can to make sure I'm comfortable so I have to share with you that his nickname for me is "Trainwreck" LOL, gotta laugh.
God bless 🙏 and I hope you have a wonderful healthy rest of your day.
Posted on 5/23/19 5:14 PM
I do have a rheumatologist. She is great! She started me on plaquenil which did slow my flares. However as I set here this morning, I am in a flare. My chest, neck and checks are red and on fire. The pain in my back and legs make it hard to set and relax. I think my gabapentin is started to not work as well. I am starting to have pins and needles in both arms again. I don't like having to rely on medications, but with out them, I don't think I would ever get out of bed again. I wish I had a partner that would support my emotional side, but I do have my Chorkie, Cuper. He knows when I don't feel good and sets right beside me. He is so cute and loveable! Thank you for your post!!