First opinion diagnosis ~ Lupus

[Shelley D]

So, I finally have a first opinion diagnosis by my primary care provider, and he says lupus. He is ordering a few more tests before referring me to a rheumatologist but when he saw my first round of blood work along with my spine x-rays, he didn't even hesitate with the diagnosis. In fact, he said it explains my pain level more so than the condition of my spine with the scoliosis and other degenerative issues, and the skin/rash issues, and joint pain & swelling.
I'm saying all this to say that going natural has probably been one of the things that has helped me delay or prolong the inevitable, just guessing and making assumptions. I don't yet know which type of lupus I have, but I already know I don't have all the typical signs, like the typical butterfly rash on the face, although I do get red-faced across the cheeks and nose when I get stressed and hot I am willing to bet I have had this for close to 20 years though and I will continue to use homemade soaps and natural oils & butters on my skin because it causes less stress on my skin for sure.
Learning how to make soap was life changing and I wish I had learned this skill so much sooner in my life, but now I will continue to learn everything I can about which ingredients are best for me and my skin
Self love is the best love
I am open to hearing anyone's experience with natural ingredients suggestions as I am just starting to refine my research to now include lupus. My Dr did mention to avoid turmeric and ginger as these things don't typically "play nice" with lupus and I said well that sucks because I love my spice tea, like I take it seriously ~ I buy the fresh roots, grate them, dehydrate them and add them to some green tea with a cinnamon stick and whole cloves ~ yummy! Not any more I don't

 

[ScentimentallyYours]

I’m glad to hear and sad to hear about the possible lupus diagnosis. It’s very hard not to get a diagnosis at all when you know something is wrong. And then to have your experiences given a name is also hard.

Because of flushing and a butterfly rash pattern on my daughters face, one doctor thought she might have lupus, but it doesn’t really fit for her. There is some thing else strange going on with her body, where she has atypical reactions to many things, and it is all tied up somehow with her autism.

Have you noticed flushing when you eat certain foods? Maybe that’s some thing you could test with your tea or other food items that you like? Maybe friends or family can help you identify when you flush and then you can figure out if it might be something you ate?

I guess I’ll go back and read up on lupus again. Hope you were able to figure things out that give you a better quality of life.

 

[Shelley D]

I’m glad to hear and sad to hear about the possible lupus diagnosis. It’s very hard not to get a diagnosis at all when you know something is wrong. And then to have your experiences given a name is also hard.

Because of flushing and a butterfly rash pattern on my daughters face, one doctor thought she might have lupus, but it doesn’t really fit for her. There is some thing else strange going on with her body, where she has atypical reactions to many things, and it is all tied up somehow with her autism.

Have you noticed flushing when you eat certain foods? Maybe that’s some thing you could test with your tea or other food items that you like? Maybe friends or family can help you identify when you flush and then you can figure out if it might be something you ate?

I guess I’ll go back and read up on lupus again. Hope you were able to figure things out that give you a better quality of life.

That's just the thing, whenever doctors asked if I ever had the butterfly rash on my face, or in relation to food, the answer was always no. But when I mentioned I get it when extremely stressed or overheated, they said it's not the same thing so But now, they say it's possible there's a connection.
My Dr also asked if I get vaccination shots, and more specifically, if I have ever gotten a covid Vax. I told him I avoid vaccinations because they trigger my rashes and I only got one covid vax because I had to fly to attend my son's wedding. He asked how did I feel after the vaccination, and I said like death warmed over, but I didn't get any rashes because i had gotten a high dose steroid shot about 2 months prior to the vax to reduce the full blown flare i had all over my arms and parts of my body. He said that's because vaccinations affect your immune system and yours is not functioning properly at all. So just a thought, if you know someone who habitually has problems with vaccinations, they may need to speak to their doctor about possible immune system issues.

 

[MelissaG]

So sorry to hear that. My uncle has lupus. It hasn't been easy for him. As for the redness on the face, that's probably rosacea. My sister and nephew have that.

 

[Cindy D.]

If you are on Facebook you may find a good lupus group, just be sure it's a closed group.
I'm in a nosulfites group, it has been a huge help even though we are all just a bit different.
If you have severe pain in just a few places, I've had good luck squeezing the liquid pain meds out of the capsuls and mixing them with homemade lotion to apply. Using the pain killers on your skin isn't suppose to cause as much organ damage or blood thinning issues. Magnesium malate seems to help me with pain,I really feel it when I forget to take it.
Hope you get the help you need and they don't try to just put you on a bunch of meds.

 

[Shelley D]

So sorry to hear that. My uncle has lupus. It hasn't been easy for him. As for the redness on the face, that's probably rosacea. My sister and nephew have that.

Thank you ~ I'm trying not to let it overwhelm me . . . yet. I don't yet know which type I have, so that will make a difference in the long run, I'm sure. And I'm trying to pacify myself with research, but that has been a bit overwhelming, as my hubby pointed out when he said I looked pissed off from across the room ~ as I was researching my potential <very limited> lupus diet Since giving up smoking 10 years ago, food has really been my only vice so now taking away my sweets, carbs, full fat dairy, favorite meats, basically everything I love to eat and being told the foods I should eat are all foods I can't stand the taste of so not looking forward to the change at all.
Typically, I don't do well with boundaries in one area unless I can break boundaries in another area ~ but I'm fresh out of areas!
I guess I'll be taking out my frustrations in my art

If you are on Facebook you may find a good lupus group, just be sure it's a closed group.
I'm in a nosulfites group, it has been a huge help even though we are all just a bit different.
If you have severe pain in just a few places, I've had good luck squeezing the liquid pain meds out of the capsuls and mixing them with homemade lotion to apply. Using the pain killers on your skin isn't suppose to cause as much organ damage or blood thinning issues. Magnesium malate seems to help me with pain,I really feel it when I forget to take it.
Hope you get the help you need and they don't try to just put you on a bunch of meds.

Interesting ~ hadn't thought about a closed FB group. I was thinking I wasn't ready to put this out there on FB yet because so many of my friends and family have literally been the ones to tell me to quit whining and suck it up over the years that I'm afraid I'll come off as sassy and in your face if I post a status update. But at the same time, there are a few who might actually care to know.
As for pain killers, I've been strongly advised to stick only with what is prescribed for now until they figure out what works and what doesn't, but I wish I had know that trick sooner. Maybe I wouldn't have taken so much ibuprofen along the way

 

[Cindy D.]

@Shelley D, closed groups are great for talking about health issues that others wouldn't understand. You would be surprised how many people have family telling them "it's all in your head".
My father & husband had to help me walk out of work one day after a reaction to sulfites and cologne. Food restrictions are a pain in the butt.... my diet is free of gluten, dairy, onion, garlic, peppers, legumes, processed foods. perfume free and mostly sugar free. I'm sure I forgot something. It's why I started making my own soap, lotions and tinctures. I was making cheese but pretty much all dairy has been giving me heart burn really bad so I have that up too.

 

[Shelley D]

@Shelley D, closed groups are great for talking about health issues that others wouldn't understand. You would be surprised how many people have family telling them "it's all in your head".
My father & husband had to help me walk out of work one day after a reaction to sulfites and cologne. Food restrictions are a pain in the butt.... my diet is free of gluten, dairy, onion, garlic, peppers, legumes, processed foods. perfume free and mostly sugar free. I'm sure I forgot something. It's why I started making my own soap, lotions and tinctures. I was making cheese but pretty much all dairy has been giving me heart burn really bad so I have that up too.

I feel you ~ luckily I haven't had bad reactions at work but I have had some doozies while at home. I've had random facial swelling that now make me wonder if they were my immune system going haywire. Back when it was happening they ruled out everything but said my blood work showed elevated histamine levels so they thought it was allergies but I couldn't afford the allergy testing at that time, but wasn't exposed to anything new. A steroid shot, and a bunch of benadryl later and I was fine for a while, until it happened again, three times total, then never again since. In recounting all the random events, the Dr said it possible my immune system was sending out signals that it was in distress but they were being overlooked or misinterpreted. Even he said my pain level now doesn't match the condition of my spine, so it for sure wouldn't have matched 10-15 years ago, so unless they specifically tested for lupus, they never would have seen it in my blood work. And since I was taking a lot of ibuprofen, they likely wouldn't have noticed anything unusual as far as inflammation markers go so that worked against me. After having done quite a bit of research over the years, I kind of really feel the struggle of the doctors because so many things have similar symptoms.

 

[CLMP]

I don't know if I can help I don't know anything about lupus but I do suffer with rashes and rosacea and the only thing that helps me is mixing a Licorice root tincture with Aloe Vera Juice or Aloe Vera gel. I mix them together and put it on my face and rashes. It works miracles for me, I hope to learn how to make lotions with it in the future but for now I just dunk a cotton ball in it and rub it on. I don't know if it would help lupus rashes though. I tried making some licorice root and Aloe Vera honey oatmeal soap hoping it would stop my rosacea but it didn't work. I have to use the Aloe Vera and licorice root on its own for it to work so thought I will someday take the time to learn lotion making.

 

[dibbles]

I’m sorry to read of your diagnosis and wish you well as you research and learn how to best take care of yourself. I haven’t known many people who have lupus, but one found gentle yoga to be very helpful. She actually became certified and teaches now. (Not hot yoga though.) I don’t know if this is something that would be helpful for you, but thought it might be worth mentioning. *hugs*

 

[MelissaG]

Thank you ~ I'm trying not to let it overwhelm me . . . yet. I don't yet know which type I have, so that will make a difference in the long run, I'm sure. And I'm trying to pacify myself with research, but that has been a bit overwhelming, as my hubby pointed out when he said I looked pissed off from across the room ~ as I was researching my potential <very limited> lupus diet Since giving up smoking 10 years ago, food has really been my only vice so now taking away my sweets, carbs, full fat dairy, favorite meats, basically everything I love to eat and being told the foods I should eat are all foods I can't stand the taste of so not looking forward to the change at all.
Typically, I don't do well with boundaries in one area unless I can break boundaries in another area ~ but I'm fresh out of areas!
I guess I'll be taking out my frustrations in my art

I know the feeling. My husband has diabetes and I'm prediabetic. Nearly everything he eats is stuff I can't stand or can't eat due to allergies (like shell fish). I really hope you can figure it out. I don't do well with limits either.

 

[Shelley D]

I don't know if I can help I don't know anything about lupus but I do suffer with rashes and rosacea and the only thing that helps me is mixing a Licorice root tincture with Aloe Vera Juice or Aloe Vera gel. I mix them together and put it on my face and rashes. It works miracles for me, I hope to learn how to make lotions with it in the future but for now I just dunk a cotton ball in it and rub it on. I don't know if it would help lupus rashes though. I tried making some licorice root and Aloe Vera honey oatmeal soap hoping it would stop my rosacea but it didn't work. I have to use the Aloe Vera and licorice root on its own for it to work so thought I will someday take the time to learn lotion making.

Interesting ~ I have found licorice root to be soothing for my intestinal issues so maybe it's time to try it on the outside

 

[Shelley D]

I’m sorry to read of your diagnosis and wish you well as you research and learn how to best take care of yourself. I haven’t known many people who have lupus, but one found gentle yoga to be very helpful. She actually became certified and teaches now. (Not hot yoga though.) I don’t know if this is something that would be helpful for you, but thought it might be worth mentioning. *hugs*

I was toying with the idea since my doctor is all about increasing my activity level, which I said I am open to as soon as someone can significantly reduce my pain level. He said when I get to the rheumatologist they have meds that take care of the pain, until then I still feel like twice mashed potatoes
When my Dr asked when all this started, I told him I started reducing my activities due to pain and muscle weakness about 20+ years ago. I specifically remember a moment of going to a gym with a friend who thought she was doing a good thing by "supporting" (forcing) me to go to a gym to help lose weight (I didn't ask for help, she just imposed herself into the situation saying she knew what was best for me). I did the few things I knew I could still do, walked on the track a few laps, then some upper body exercises on the weights, then a few more laps and I was done. She insisted on pushing me past my comfort zone and got an assistant to set us up on the elliptical machines, who said she set them at zero resistance and would increase it to suit our comfort level. I couldn't do 2 revolutions, which wasn't a surprise to me because I had already given up bicycling because my legs couldn't do that movement any more so it was only logical to me that I wouldn't be able to do an elliptical. They both looked at me in disgust, like I was just being stubborn and not trying. After all, I still looked "healthy" and was only just starting to gain weight so my clothes we getting uncomfortable but I was in the 130's and around 35 years old. When we left the gym, my girlfriend said she was so embarrassed for trying to help me and to not ask for her help unless I was serious about it. Um, I never asked for your help to start with, but thank you anyway? Yeah. But I digress ~ yoga is definitely more my speed at this time! I'm thinking of trying chair yoga since the floor is the "hell zone" at this time, no getting down low unless they seriously reduce my pain level.

 

[dibbles]

@Shelley D chair yoga could be good then. If you make your instructor aware of your condition or limitations, they usually can offer modified poses that might be more comfortable. I hope you find something that gives you relief, and you don't have to wait too long for meds.

 

[Cindy D.]

I was toying with the idea since my doctor is all about increasing my activity level, which I said I am open to as soon as someone can significantly reduce my pain level. He said when I get to the rheumatologist they have meds that take care of the pain, until then I still feel like twice mashed potatoes
When my Dr asked when all this started, I told him I started reducing my activities due to pain and muscle weakness about 20+ years ago. I specifically remember a moment of going to a gym with a friend who thought she was doing a good thing by "supporting" (forcing) me to go to a gym to help lose weight (I didn't ask for help, she just imposed herself into the situation saying she knew what was best for me). I did the few things I knew I could still do, walked on the track a few laps, then some upper body exercises on the weights, then a few more laps and I was done. She insisted on pushing me past my comfort zone and got an assistant to set us up on the elliptical machines, who said she set them at zero resistance and would increase it to suit our comfort level. I couldn't do 2 revolutions, which wasn't a surprise to me because I had already given up bicycling because my legs couldn't do that movement any more so it was only logical to me that I wouldn't be able to do an elliptical. They both looked at me in disgust, like I was just being stubborn and not trying. After all, I still looked "healthy" and was only just starting to gain weight so my clothes we getting uncomfortable but I was in the 130's and around 35 years old. When we left the gym, my girlfriend said she was so embarrassed for trying to help me and to not ask for her help unless I was serious about it. Um, I never asked for your help to start with, but thank you anyway? Yeah. But I digress ~ yoga is definitely more my speed at this time! I'm thinking of trying chair yoga since the floor is the "hell zone" at this time, no getting down low unless they seriously reduce my pain level.

Wow and I kept thinking that's going to make her hurt more!
Just to let you know liquorice Root is in the legume family, in case you need to know that at some point.
Hopefully you can absorb some of the info you are finding online, so when you can speak to the dr they know you want to learn as much as possible to help yourself.

 

[Shelley D]

Wow and I kept thinking that's going to make her hurt more!
Just to let you know liquorice Root is in the legume family, in case you need to know that at some point.
Hopefully you can absorb some of the info you are finding online, so when you can speak to the dr they know you want to learn as much as possible to help yourself.

Good to know! I had read that I need to add legumes to my diet but what the heck is a legume?! oh this is gonna be fun!

 

[Cindy D.]

Good to know! I had read that I need to add legumes to my diet but what the heck is a legume?! oh this is gonna be fun!

The Beans, peas , peanuts, cinnamon, clover family etc.

 

[Savage Daughter]

@Shelley D I was going to reply to you privately regarding this topic, but then thought the information might be helpful to others. I hope you don't mind.

I have been doing a LOT of research as of late regarding diseases brought on by vitamin deficiencies, which are incredibly common amongst the majority of us. People are malnourished, which sounds ridiculous if you live in a 'developed' country where we appear to have an abundance of everything, including food. Even people who appear to be physically 'obese' - a word I detest - are malnourished. Calories are NOT nourishment, and unfortunately, our food is bereft of nutrition for the most part, yet loaded with a stupid amount of empty calories.

People suffering from malnutrition (the vast majority of us at this point) are not getting the nutrition / vitamins / minerals / trace elements / essential fatty acids (EFA) we need to physically, emotionally & mentally thrive. There was once some very important research being done by doctors & scientists in this field, especially in the 1940s after the depression, who would spend extensive time & effort in figuring these things out. They would spend a great deal of time with each individual patient discussing the foods they ate, their daily habits & lives, in depth, and they did begin coming up with answers for disease such as pelagra for example, which were very common at that time. Now, we just have 'doctors' with non-solutions for the simplest of issues (eg. eczema, acne) whose main profession is pimping pills with tonnes of side effects for pharmaceutical companies, while the pharmaceutical corporations are buying up supplement companies & degrading the products they are selling as a means to funnel people towards the drugs they deal.

RE MALNUTRITION: people can be malnourished due to the foods they eat which no longer have the same nutrition they once did due to heavy use of glyphosate on crops, other herbicides / pesticides etc used in agriculture, the things we drink, medications we take, habits we have, geographical location we live in, our bodies being unable to absorb certain nutrients, issues with our digestive systems, and so many more reasons. Most of us also eat a diet of highly processed foods & highly processed ingredients, which have been stripped of their nutrition. All of these things relate to vitamin, mineral & trace element deficiencies. Think full bellies (fed) that are actually empty (malnourished), kinda like a balloon.

Anyways, I would suggest looking into vitamin deficiencies related to lupus.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4185297/This article talks about vitamin D deficiency, and there are many, many articles regarding this subject.

There are also references I have come across mentioning selenium, vitamin C & others.

Look into Andrew Saul and orthomolecular medicine.
Linus Pauling is also an excellent source of information. He's no longer alive but he did a lot of research in relation to mega-dosing vitamins to clear various diseases. One of my neighbours who is a 'famous' artist & who used to do the 'art' for anatomy / medical classes & books was working at the same university where Linus Pauling was also working at that time. Even then, Linus Pauling was shunned as some sort of freak because of the research he did, according to her, but he is now known as the 'father of orthomolecular medicine'.

I do hope you find some answers for your particular situation. My life-long best friend has had lupus for many years now. I wish she would take vitamins more seriously as she has given me some scares over the years, but she doesn't, unfortunately.

 

[Shelley D]

@Shelley D I was going to reply to you privately regarding this topic, but then thought the information might be helpful to others. I hope you don't mind.

I have been doing a LOT of research as of late regarding diseases brought on by vitamin deficiencies, which are incredibly common amongst the majority of us. People are malnourished, which sounds ridiculous if you live in a 'developed' country where we appear to have an abundance of everything, including food. Even people who appear to be physically 'obese' - a word I detest - are malnourished. Calories are NOT nourishment, and unfortunately, our food is bereft of nutrition for the most part, yet loaded with a stupid amount of empty calories.

People suffering from malnutrition (the vast majority of us at this point) are not getting the nutrition / vitamins / minerals / trace elements / essential fatty acids (EFA) we need to physically, emotionally & mentally thrive. There was once some very important research being done by doctors & scientists in this field, especially in the 1940s after the depression, who would spend extensive time & effort in figuring these things out. They would spend a great deal of time with each individual patient discussing the foods they ate, their daily habits & lives, in depth, and they did begin coming up with answers for disease such as pelagra for example, which were very common at that time. Now, we just have 'doctors' with non-solutions for the simplest of issues (eg. eczema, acne) whose main profession is pimping pills with tonnes of side effects for pharmaceutical companies, while the pharmaceutical corporations are buying up supplement companies & degrading the products they are selling as a means to funnel people towards the drugs they deal.

RE MALNUTRITION: people can be malnourished due to the foods they eat which no longer have the same nutrition they once did due to heavy use of glyphosate on crops, other herbicides / pesticides etc used in agriculture, the things we drink, medications we take, habits we have, geographical location we live in, our bodies being unable to absorb certain nutrients, issues with our digestive systems, and so many more reasons. Most of us also eat a diet of highly processed foods & highly processed ingredients, which have been stripped of their nutrition. All of these things relate to vitamin, mineral & trace element deficiencies. Think full bellies (fed) that are actually empty (malnourished), kinda like a balloon.

Anyways, I would suggest looking into vitamin deficiencies related to lupus.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4185297/This article talks about vitamin D deficiency, and there are many, many articles regarding this subject.

There are also references I have come across mentioning selenium, vitamin C & others.

Look into Andrew Saul and orthomolecular medicine.
Linus Pauling is also an excellent source of information. He's no longer alive but he did a lot of research in relation to mega-dosing vitamins to clear various diseases. One of my neighbours who is a 'famous' artist & who used to do the 'art' for anatomy / medical classes & books was working at the same university where Linus Pauling was also working at that time. Even then, Linus Pauling was shunned as some sort of freak because of the research he did, according to her, but he is now known as the 'father of orthomolecular medicine'.

I do hope you find some answers for your particular situation. My life-long best friend has had lupus for many years now. I wish she would take vitamins more seriously as she has given me some scares over the years, but she doesn't, unfortunately.

Good info for sure! The irony is I have faced a lot of criticism from doctors because of their first impressions of me. They see a clinically obese person and assume I sit at home eating nothing but junk all day, when in fact I'm well aware of my dietary weaknesses (love sweets & carbs, hate vegetables) and have been supplementing and "tweaking" my diet for a long time. I always love to see the doctors faces when they see my blood work and I have no dietary deficiencies nor am I diabetic or even borderline diabetic, and then I tell them it's only because I cannot be active anymore that I can't lose my weight. As for my diet, I prefer to take my greens in a supplement form or as smoothies because I absolutely hate veggies, especially the green
ones ~ my mom has stories of my efforts to ditch my veggies and how I always had my finger in the sugar bowl (who me?!). But, I was also the child she couldn't keep in the house ~ I would leave clean and come home dirty, hair a mess and a big grin on my face and stories to tell
My life started changing in my 20s ~ I realized I was experiencing muscle weakness and generalized pain all over my body, but not related to any specific reason. Yes, I had been in a couple car accidents by then. Yes I was having my kids but I tried explaining to the doctors it wasn't related to any of that and they kept saying it was, or it was just in my head Either way, they wouldn't order tests of my spine to rule out issues for the muscle weakness and pain so they dropped that ball.
*I did have 1 (one) nurse practitioner tell me on the side and off the record 20+ years ago that it was most likely fibromyalgia but the doctor (I was seeing that day) would not put that in my record because he didn't believe it was a real disorder. Fast forward all these years and on Friday I just got my second opinion diagnosis from my rheumatologist: it is officially NOT LUPUS! After more blood work he said no lupus, no rheumatoid arthritis, just fibromyalgia! I was both relieved and frustrated (I'm sure I don't need to explain why), and literally in tears.
I meant to post this update yesterday but I got distracted working on my soapy project ~ and then you beat me to the punch this morning!
I would love to add that I love your posts! I wanted to study herbal medicine about 20+ years ago (when I started experiencing all my weird symptoms that nobody believed) but my first husband (now ex-husband) wouldn't allow the extra spending for my studies because <shocker> he was on the side of the doctors, if you can't find a reason for your problems then it's all in your head so he didn't believe me either (see why he's my ex?). But I do truly believe in it and it's nice having someone so well-versed in the forum I apologize for my rambling but sometimes I just can't stop it

 

[AliensrReal]

I’m glad it’s not lupus. Fibromyalgia is a beast. It’s not uncommon for it to take years to diagnosis as there is no confirmatory test for it. It’s a diagnosis of exclusion.

I try extremely hard not to form a bias of my patients based on weight, age or chronic conditions. It can still happen though. A big problem among physicians is having bias towards certain populations.