First opinion diagnosis ~ Lupus

[Shelley D]

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.

That you make the effort is a huge plus! Since I've been in Florida I have basically told the doctors here that I didn't have any medical records from back in Arkansas because I didn't want them seeing that I had been labeled as drug seeking from insisting my pain was real and demanding something be done. But I wasn't wanting drugs, I was wanting action, something other than more blood work. I actually told doctors I come from a family of addicts and alcoholics so I don't want oxy or opiates ~ why would I say that if I were drug seeking?! It's been a frustrating journey for sure. Hopefully it will start to level out from here.

 

[AliOop]

@Shelley D have you looked into low-dose naltrexone for a non-opioid pain relief? It was the only thing that worked for my husband’s auto-immune-disease-related pain. It’s an off-label use. Not covered by insurance (of course) but only costs $35/mo.

A few websites describe the small-scale research and how effective it is across a wide range of different auto-immune diseases. They can’t get funded for large research studies bc it is long out of patent, so there is no money in it.

I will add that sugar and carbs are a huge trigger for most autoimmune conditions. My husband has no weight issues or blood sugar issues, but he is a big carb lover and constantly battles between his love for those foods and his health needs. The struggle is real.

 

[Shelley D]

@Shelley D have you looked into low-dose naltrexone for a non-opioid pain relief? It was the only thing that worked for my husband’s auto-immune-disease-related pain. It’s an off-label use. Not covered by insurance (of course) but only costs $35/mo.

A few websites describe the small-scale research and how effective it is across a wide range of different auto-immune diseases. They can’t get funded for large research studies bc it is long out of patent, so there is no money in it.

I will add that sugar and carbs are a huge trigger for most autoimmune conditions. My husband has no weight issues or blood sugar issues, but he is a big carb lover and constantly battles between his love for those foods and his health needs. The struggle is real.

Not yet ~ I wasn't sure which direction to go. Right now, the rheumatologist is trying gabapentin (nerve meds) to see if that helps. I have an MRI this coming Saturday for my lower back (on behalf of my ortho doctor) to see if there's anything else the x-rays didn't show (but he didn't order hips or neck so I guess he's saving that for later? ).
I do know my love of sweets & carbs is going to be my biggest challenge and I will have eventually have to give it up because I can't do "just a little bit", I'm an "all or nothing" kind of girl
Unfortunately for me, food is the last thing in my life (aside from my hubby) that makes me happy ~ I can't run anymore, or go biking or hiking (thanks to my hips), I can't play sports, not even solo (like taking some swings at a batting cage or smacking a ball against a wall, yeah, I used to play a lot of sports), even swimming is a struggle as I can only really just float around anymore. That is so freaking depressing in itself. When I was young, going to the beach was fun because I was playing volleyball or paddle ball or Frisbee until I was a sweaty sand covered mess then I went for a dunk and came back for more ~ while all the other girls were laying there working on their tans. I sure do miss those days

 

[Savage Daughter]

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.

I get that. We had a load of snow last year & FREEZING temperatures like close to -20º.....I should have been out there hiking, snowshoeing etc, but just couldn't bring myself to get out there most days. I chose my wood stove over moving my body....and put on approximately 20 pounds. Doesn't sound like much to some people, but I noticed a lot of differences in my body this year as a result. I have also dealt with chronic pain during periods of my life, which resulted in me getting out of the house far less than normal. I don't do gyms, detest them, but I do love sweating like a donkey outdoors

I recently came across a doctor who spent ZERO time talking to me - didn't even look me in the face for the first 15 minutes I was in his examining room - just looking at what previous doctors had said in my file (not much info at all as I recently moved, so none of them know me at all) - not asking me any questions, and who then turned around to face me for the purpose of making all sorts of statements based on....?? The man doesn't know me, knows nothing about what I eat, my sleeping patterns, the supplements I take, my daily habits, whether or not I have any major stress in my life, if I get much exercise, not even if I drink much water, nothing. Not even the basics. I'm old enough to remember when doctors asked these questions. This is the norm now when it comes to doctors' behaviour with their patients, as I hear from many people, not the exception.

Needless to say, I have not been back & will not go back. I went home & solved my own issue after doing more reading & experimentation.

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.

Sugar does cause this type of inflammation in the body, especially when this has been a life-long thing for someone, believe it. Having that craving for sugar / sweet stuff points to an imbalance in the body to begin with. And yes, I have said this before, because all symptoms (mental / emotional / physical & often spiritual) highlight imbalances in our personal 'operating systems'. No 2 people are alike, no 2 bodies are alike. I shared this before in another thread, but you may not have seen it: abchomeopathy.com
It's a 'symptom calculator', for lack of any better term I can come up with right now. Even if you don't go the route of homeopathy to treat yourself, looking at the many very detailed symptoms here might give you some insight into what you're dealing with. The calculator gives you suggestions for homeopathic remedies, which you can research so you might better understand what is going on with your body.

*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.

That truly burns my biscuits when I hear things like this, because I have had doctors cop the same attitude with me. Highly unprofessional & narrow-minded. That's one of the reasons I will choose to treat my own issues independently 95% of the time, rarely with the help of a doctor anymore. And when I do talk to doctors about issues I may be having, and mention the research I have done in terms of nutritional imbalances, I usually get a slack-jawed response, and zero intelligent words coming from their mouths. I have had only 2 specialists in the past 20 years who actually listened to me when I told them what I am doing for myself. One specifically asked for my advice in terms of plants I use & how I use them so he could pass on the information to his other patients who were on massive doses of pain killers of various types but still in severe pain. He was a chronic pain specialist who didn't have clue regarding 'full-spectrum' plant medicine, but was very much willing to learn, and wasn't afraid to admit he knew nothing about this. This is KEY! Interesting, open minded guy who I enjoyed discussing this stuff with.

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.

That's awesome, and I absolutely *do* understand why you'd be frustrated & in tears....but they still have not shared any possible solutions with you. I am quite sure that if you haven't been prescribed pills yet for this imbalance they have no answers for, you will be very shortly. Try discussing nutrition or vitamin / mineral deficiencies with these people, as well as orthomolecular medicine. You may get lucky & find you have a supportive doctor, which is great. If not, you can choose to treat yourself, or find a different doctor. This kind of garbage has gone on far too long. Doctors have not been doing their jobs properly for a very long time.

I would love to add that I love your posts!

That is very sweet of you

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

Oh lord almighty, I just finished talking to my daughter-in-law who left the man she was in a relationship with because of his control issues....who are these men who think they have the right to ALLOW anything when it comes to the women in their lives? There is no reason you cannot study now, and having a degree in herbalism is NOT necessary in order to treat yourself. Many generations of people, for thousands of years, have been successfully using plant medicine. If they hadn't been, none of us would be here today. We would have died out long ago. That said, I highly recommend doing a LOT of reading, a lot of personal experimentation, a lot of looking at how various plants have been used by many cultures for thousands of years.

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?).

Yep....one of the reasons I left my husband a few years ago....and a stellar choice I made Turns out, I bounced back physically once I left him, go figger FYI not ONE doctor asked me about stress levels during this time, just kept trying to prescribe me pills.

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

No worries, my posts can get to be nosebleeds sometimes as well LOL I am always learning, always always....

3 very good books I am reading at the moment which might interest you:

• NIACIN: THE REAL STORY ~ Dr Abraham Hoffer / Andrew W Saul PhD / Harold D Foster PhD
• DMSO: Dimethylsulfoxide for Humans - Recipes & Treatment ~ Herb Richards PhD
• Native American Ethnobotany (a whopping 927 pages of *amazing* information regarding healing plants, from A-Z) ~ Daniel E Moerman

If you have any questions, feel free to DM me I am not a doctor, but I can suggest books, plants you might want to research, websites, techniques for making your own extracts etc. I am currently using DMSO for a couple of issues I am looking after myself & finding it very VERY helpful. The DMSO book above is fairly basic, but it's a good quick reference publication. Must be careful to buy 'pharmaceutical grade' (99.99% pure) DMSO and do a lot of reading before delving into this so you're aware of how to properly use it.

Good luck with all

 

[Shelley D]

I get that. We had a load of snow last year & FREEZING temperatures like close to -20º.....I should have been out there hiking, snowshoeing etc, but just couldn't bring myself to get out there most days. I chose my wood stove over moving my body....and put on approximately 20 pounds. Doesn't sound like much to some people, but I noticed a lot of differences in my body this year as a result. I have also dealt with chronic pain during periods of my life, which resulted in me getting out of the house far less than normal. I don't do gyms, detest them, but I do love sweating like a donkey outdoors

I recently came across a doctor who spent ZERO time talking to me - didn't even look me in the face for the first 15 minutes I was in his examining room - just looking at what previous doctors had said in my file (not much info at all as I recently moved, so none of them know me at all) - not asking me any questions, and who then turned around to face me for the purpose of making all sorts of statements based on....?? The man doesn't know me, knows nothing about what I eat, my sleeping patterns, the supplements I take, my daily habits, whether or not I have any major stress in my life, if I get much exercise, not even if I drink much water, nothing. Not even the basics. I'm old enough to remember when doctors asked these questions. This is the norm now when it comes to doctors' behaviour with their patients, as I hear from many people, not the exception.

Needless to say, I have not been back & will not go back. I went home & solved my own issue after doing more reading & experimentation.



Sugar does cause this type of inflammation in the body, especially when this has been a life-long thing for someone, believe it. Having that craving for sugar / sweet stuff points to an imbalance in the body to begin with. And yes, I have said this before, because all symptoms (mental / emotional / physical & often spiritual) highlight imbalances in our personal 'operating systems'. No 2 people are alike, no 2 bodies are alike. I shared this before in another thread, but you may not have seen it: abchomeopathy.com
It's a 'symptom calculator', for lack of any better term I can come up with right now. Even if you don't go the route of homeopathy to treat yourself, looking at the many very detailed symptoms here might give you some insight into what you're dealing with. The calculator gives you suggestions for homeopathic remedies, which you can research so you might better understand what is going on with your body.



That truly burns my biscuits when I hear things like this, because I have had doctors cop the same attitude with me. Highly unprofessional & narrow-minded. That's one of the reasons I will choose to treat my own issues independently 95% of the time, rarely with the help of a doctor anymore. And when I do talk to doctors about issues I may be having, and mention the research I have done in terms of nutritional imbalances, I usually get a slack-jawed response, and zero intelligent words coming from their mouths. I have had only 2 specialists in the past 20 years who actually listened to me when I told them what I am doing for myself. One specifically asked for my advice in terms of plants I use & how I use them so he could pass on the information to his other patients who were on massive doses of pain killers of various types but still in severe pain. He was a chronic pain specialist who didn't have clue regarding 'full-spectrum' plant medicine, but was very much willing to learn, and wasn't afraid to admit he knew nothing about this. This is KEY! Interesting, open minded guy who I enjoyed discussing this stuff with.



That's awesome, and I absolutely *do* understand why you'd be frustrated & in tears....but they still have not shared any possible solutions with you. I am quite sure that if you haven't been prescribed pills yet for this imbalance they have no answers for, you will be very shortly. Try discussing nutrition or vitamin / mineral deficiencies with these people, as well as orthomolecular medicine. You may get lucky & find you have a supportive doctor, which is great. If not, you can choose to treat yourself, or find a different doctor. This kind of garbage has gone on far too long. Doctors have not been doing their jobs properly for a very long time.



That is very sweet of you



Oh lord almighty, I just finished talking to my daughter-in-law who left the man she was in a relationship with because of his control issues....who are these men who think they have the right to ALLOW anything when it comes to the women in their lives? There is no reason you cannot study now, and having a degree in herbalism is NOT necessary in order to treat yourself. Many generations of people, for thousands of years, have been successfully using plant medicine. If they hadn't been, none of us would be here today. We would have died out long ago. That said, I highly recommend doing a LOT of reading, a lot of personal experimentation, a lot of looking at how various plants have been used by many cultures for thousands of years.



Yep....one of the reasons I left my husband a few years ago....and a stellar choice I made Turns out, I bounced back physically once I left him, go figger FYI not ONE doctor asked me about stress levels during this time, just kept trying to prescribe me pills.



No worries, my posts can get to be nosebleeds sometimes as well LOL I am always learning, always always....

3 very good books I am reading at the moment which might interest you:

• NIACIN: THE REAL STORY ~ Dr Abraham Hoffer / Andrew W Saul PhD / Harold D Foster PhD
• DMSO: Dimethylsulfoxide for Humans - Recipes & Treatment ~ Herb Richards PhD
• Native American Ethnobotany (a whopping 927 pages of *amazing* information regarding healing plants, from A-Z) ~ Daniel E Moerman

If you have any questions, feel free to DM me I am not a doctor, but I can suggest books, plants you might want to research, websites, techniques for making your own extracts etc. I am currently using DMSO for a couple of issues I am looking after myself & finding it very VERY helpful. The DMSO book above is fairly basic, but it's a good quick reference publication. Must be careful to buy 'pharmaceutical grade' (99.99% pure) DMSO and do a lot of reading before delving into this so you're aware of how to properly use it.

Good luck with all

Thank you for the suggestions ~ I will check them out! I am always doing some kind of research, mostly online. When I go down a rabbit hole, I follow all the trails

 

[Tammyfarms]

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

Shelly, just found this post. Glad it’s not lupus. I just wanted to say that as someone who was essentially told that “it’s all in my head” for years before getting a diagnosis I understand the frustration. You mentioned you have elevated histamine levels. Is that part of fibromyalgia? I ask because many of your symptoms, especially the elevated histamine, are consistent with Mast Cell Activation reactions. This is a website that is from a researcher who has mast cell activation. Mast Attack

It may provide some answers or it may rule it out. Mast cell activation is not something most providers have experience with and it’s a difficult diagnosis. As an example, many of us have diarrhea while some have constipation. It’s truly a challenging thing to diagnose. Anyway, if you want more information let me know. There are some good closed FB groups. Hope you are finding some relief.

 

[Shelley D]

Shelly, just found this post. Glad it’s not lupus. I just wanted to say that as someone who was essentially told that “it’s all in my head” for years before getting a diagnosis I understand the frustration. You mentioned you have elevated histamine levels. Is that part of fibromyalgia? I ask because many of your symptoms, especially the elevated histamine, are consistent with Mast Cell Activation reactions. This is a website that is from a researcher who has mast cell activation. Mast Attack

It may provide some answers or it may rule it out. Mast cell activation is not something most providers have experience with and it’s a difficult diagnosis. As an example, many of us have diarrhea while some have constipation. It’s truly a challenging thing to diagnose. Anyway, if you want more information let me know. There are some good closed FB groups. Hope you are finding some relief.

I mentioned it to my primary care Dr because of all the rashes i get and all the various diagnoses I have gotten but he chalked it up to what he thought was going to be the lupus ~ so I think I'll circle him back to that now that it's not lupus.
We shall see . . .

 

[johnnyusa]

I had an ex who died of Lupus. I strongly believe it is an autoimmune disease caused by the same factors nobody wants to discuss that causes autism in boys; namely, these dag blasted vaccines that are flipping chromosomes on and off like light switches!
I recommend a Doctor of Functional Medicine to check if lupus victim has MTHFR bc almost everybody does these days but nobody knows it bc reg doctors have no idea what it is & insurance won't pay to test for it, but it's caused a helluva lot of problems in my family & it's passed down once somebody in the family is affected from that shot and a chromosome stops working usually nobody notices immediately but...
I got it from my dad who got paralyzed w/ Guillain–Barré from the massive barrage of vaccines they shot him up with serving in Vietnam. I didn't know 'till I was in my early 40s just quite recently that my #11 chromosome is just barely working.
I think of mthfr, lupus, autism, mthfr, & schitzo all being in the same category. It's basically a GI problem resulting in heavy metals that can get into the brain and did cause quite severe schitzophrenia in one of my brothers. My whole family's actually pretty much not right but so long as Pzifer's making bucketloads of cash w/ zero liability it's allgood

 

[Shelley D]

I had an ex who died of Lupus. I strongly believe it is an autoimmune disease caused by the same factors nobody wants to discuss that causes autism in boys; namely, these dag blasted vaccines that are flipping chromosomes on and off like light switches!
I recommend a Doctor of Functional Medicine to check if lupus victim has MTHFR bc almost everybody does these days but nobody knows it bc reg doctors have no idea what it is & insurance won't pay to test for it, but it's caused a helluva lot of problems in my family & it's passed down once somebody in the family is affected from that shot and a chromosome stops working usually nobody notices immediately but...
I got it from my dad who got paralyzed w/ Guillain–Barré from the massive barrage of vaccines they shot him up with serving in Vietnam. I didn't know 'till I was in my early 40s just quite recently that my #11 chromosome is just barely working.
I think of mthfr, lupus, mthfr, & schitzo all being in the same category. It's basically a GI problem resulting in heavy metals that can get into the brain and did cause quite severe schitzophrenia in one of my brothers. My whole family's actually pretty much not right but so long as Pzifer's making bucketloads of cash w/ zero liability it's allgood

Interesting information ~ I do know that I am ANA positive so my PC Dr will probably continue with blood work to see if there are other underlying issues ~ we still have to figure out the source of the rashes so there's that. But at least nobody can deny my pain anymore so that's a huge plus for me. Validation is so satisfying for real!
As for a cause for my fibromyalgia ~ I think I possibly fall into 2 categories: early childhood abuse/trauma and 2) early physical trauma (accidental) which caused damage to my neck. Both were enough to leave their mark, so to say. Then there's scoliosis and other issues like multiple car accidents that compound the earlier traumas. So, my central nervous system has been under attack since early childhood, so fibromyalgia 100% makes sense, for the pain and nerve issues. Not to rule out other factors though ~ I did grow up in rural south Jersey where crop dusting and neighborhood mosquito spraying were common occurrences so there's no telling what the root cause really is

 

[Savage Daughter]

I had an ex who died of Lupus. I strongly believe it is an autoimmune disease caused by the same factors nobody wants to discuss that causes autism in boys; namely, these dag blasted vaccines that are flipping chromosomes on and off like light switches!
I recommend a Doctor of Functional Medicine to check if lupus victim has MTHFR bc almost everybody does these days but nobody knows it bc reg doctors have no idea what it is & insurance won't pay to test for it, but it's caused a helluva lot of problems in my family & it's passed down once somebody in the family is affected from that shot and a chromosome stops working usually nobody notices immediately but...
I got it from my dad who got paralyzed w/ Guillain–Barré from the massive barrage of vaccines they shot him up with serving in Vietnam. I didn't know 'till I was in my early 40s just quite recently that my #11 chromosome is just barely working.
I think of mthfr, lupus, autism, mthfr, & schitzo all being in the same category. It's basically a GI problem resulting in heavy metals that can get into the brain and did cause quite severe schitzophrenia in one of my brothers. My whole family's actually pretty much not right but so long as Pzifer's making bucketloads of cash w/ zero liability it's allgood

Yes ma'am, the topic nobody wants to touch....the fact that all this which gets injected into us MAY be causing problems.

My next door neighbour is 48 & was completely normal, physically fit, very strong as she used to be a trekking guide in Myanmar & other places.

After getting 2 vaccinations over the past couple of years because her boss demanded it - I'm looking at you too Pfizer - she developed inflammation to the degree that her entire body became swollen, her joints became severely swollen with lumps forming over them (wrists / knees / shoulders / elbows), she was unable to even walk to the toilet had to be carried, and developed severe arthritis. She has now also quit working because her body cannot tolerate it. Doctors don't have the %!#&s to even consider the fact that just *maybe* those vaccinations are causing massive inflammation throughout her body. There is no history of arthritis in her family. No history of chronic inflammation either.

I make salve for her chronic pain, which according to her is the only thing which helps after she had tried everything available in stores & many pharmaceutical medications, along with VITAMINS in large doses. Even then, she has worse days than some others, but she is better than she initially was.

Much love & healing to anyone suffering with 'unexplained' illness

 

[Shelley D]

Yes ma'am, the topic nobody wants to touch....the fact that all this which gets injected into us MAY be causing problems.

My next door neighbour is 48 & was completely normal, physically fit, very strong as she used to be a trekking guide in Myanmar & other places.

After getting 2 vaccinations over the past couple of years because her boss demanded it - I'm looking at you too Pfizer - she developed inflammation to the degree that her entire body became swollen, her joints became severely swollen with lumps forming over them (wrists / knees / shoulders / elbows), she was unable to even walk to the toilet had to be carried, and developed severe arthritis. She has now also quit working because her body cannot tolerate it. Doctors don't have the %!#&s to even consider the fact that just *maybe* those vaccinations are causing massive inflammation throughout her body. There is no history of arthritis in her family. No history of chronic inflammation either.

I make salve for her chronic pain, which according to her is the only thing which helps after she had tried everything available in stores & many pharmaceutical medications, along with VITAMINS in large doses. Even then, she has worse days than some others, but she is better than she initially was.

Much love & healing to anyone suffering with 'unexplained' illness

When I was "checking boxes" with my PC Dr, I told him I no longer take immunization shots because they freak out my body, usually triggering rashes, but my joints get super inflamed, painful and swollen. He said that was my immune system not being able to handle the shots and to avoid them (also another reason he thought I had lupus). Even without lupus, I still have an issue with my immune system (being ANA positive) so believe me, I still avoid the shots as if they were the plague!

 

[VikingChick]

When I was "checking boxes" with my PC Dr, I told him I no longer take immunization shots because they freak out my body, usually triggering rashes, but my joints get super inflamed, painful and swollen. He said that was my immune system not being able to handle the shots and to avoid them (also another reason he thought I had lupus). Even without lupus, I still have an issue with my immune system (being ANA positive) so believe me, I still avoid the shots as if they were the plague!

First of all……I’m really sorry for this horrible health journey you’ve been on. My husband also suffers from an autoimmune disorder - in his case, multiple sclerosis. He spent 22 years in the military, where they jack you full of all kinds of vaccines prior to deployment. We’re not unconvinced that they weren’t the cause of his issues. He actually does pretty well, and thankfully hasn’t had the need to start any meds. For him, the best medicine has been keeping his diet within certain parameters. We did Paleo a handful of years ago and he felt great, but it’s a LOT of work. Recently we tried the 10-day reset in Michael Symon’s book, “Fix it with Food.” He’s a celebrity chef but also suffers from autoimmune disorders so we figured it’s worth trying. VikingDude has gotten on board with it as a lifestyle because he feels great when he‘s being compliant. So essentially it’s no processed foods (to include white sugar, white rice, etc.), red meat/poultry only a couple times per week, plenty of fruits and veggies (I know you said you don’t like vegetables!). He does some carbs but not processed ones like white bread. We don’t really limit carbs but try to eat good ones.

 

[Shelley D]

First of all……I’m really sorry for this horrible health journey you’ve been on. My husband also suffers from an autoimmune disorder - in his case, multiple sclerosis. He spent 22 years in the military, where they jack you full of all kinds of vaccines prior to deployment. We’re not unconvinced that they weren’t the cause of his issues. He actually does pretty well, and thankfully hasn’t had the need to start any meds. For him, the best medicine has been keeping his diet within certain parameters. We did Paleo a handful of years ago and he felt great, but it’s a LOT of work. Recently we tried the 10-day reset in Michael Symon’s book, “Fix it with Food.” He’s a celebrity chef but also suffers from autoimmune disorders so we figured it’s worth trying. VikingDude has gotten on board with it as a lifestyle because he feels great when he‘s being compliant. So essentially it’s no processed foods (to include white sugar, white rice, etc.), red meat/poultry only a couple times per week, plenty of fruits and veggies (I know you said you don’t like vegetables!). He does some carbs but not processed ones like white bread. We don’t really limit carbs but try to eat good ones.

I will look into that one ~ I try to get my greens with smoothies but I don't keep up with it as well as I should. I admit, I still treat my diet like a band-aid instead of a lifestyle I have been following a Dr on youtube who talks about health and nutrition (the real stuff the Healthcare industry doesn't want you to know) and he compares the various diets and their effects on body, plus how to control and improve most health issues naturally. But making the commitment is huge step for me ~ it will affect both me and my husband, us be extra shopping. Hubby's a pickier eater than me so I would need to get his food and then my food ~ right now, I just eat what he eats. So diet will definitely be my my biggest challenge on this journey Y'all pray for me for real!

 

[VikingChick]

I will look into that one ~ I try to get my greens with smoothies but I don't keep up with it as well as I should. I admit, I still treat my diet like a band-aid instead of a lifestyle I have been following a Dr on youtube who talks about health and nutrition (the real stuff the Healthcare industry doesn't want you to know) and he compares the various diets and their effects on body, plus how to control and improve most health issues naturally. But making the commitment is huge step for me ~ it will affect both me and my husband, us be extra shopping. Hubby's a pickier eater than me so I would need to get his food and then my food ~ right now, I just eat what he eats. So diet will definitely be my my biggest challenge on this journey Y'all pray for me for real!

It’s so hard! My natural tendency is more toward junk food so I totally know how hard it is.

 

[Savage Daughter]

I will look into that one ~ I try to get my greens with smoothies but I don't keep up with it as well as I should. I admit, I still treat my diet like a band-aid instead of a lifestyle I have been following a Dr on youtube who talks about health and nutrition (the real stuff the Healthcare industry doesn't want you to know) and he compares the various diets and their effects on body, plus how to control and improve most health issues naturally. But making the commitment is huge step for me ~ it will affect both me and my husband, us be extra shopping. Hubby's a pickier eater than me so I would need to get his food and then my food ~ right now, I just eat what he eats. So diet will definitely be my my biggest challenge on this journey Y'all pray for me for real!

Healthy, quality food actually tastes far superior to processed food. Healthy food should blow your mind when it comes to flavour If 'healthy' food tastes it's not being made / cooked / baked properly, or the ingredients are lacking in quality.

Changes don't all have to be made at once. And not to stir the pot, but you're having serious health issues, so your first thought should be for yourself, regardless of your husband's pickiness. From time to time, try some locally raised organic eggs, locally raised beef, locally raised chicken, locally caught seafood, locally baked sourdough bread. FRESH! Not processed This really is key. You WILL notice a difference in flavour & quality, as well as how you feel after eating.

Another suggestions would be to try hitting up farmers markets. They're fun, they have a lot of things besides foods, they often have great food stalls or food trucks where you can sample delicious stuff that's more on the healthy side, and you will quickly discover how different a locally grown organic tomato or head of lettuce will taste compared to the junk in the grocery store. That may be enough to begin tweaking your interest & taste for vegetables. And fruits! Never be afraid of raw fruit!

Yes ma'am, definitely praying for you & encouraging you to begin taking some baby steps towards health & happiness

 

[Shelley D]

Healthy, quality food actually tastes far superior to processed food. Healthy food should blow your mind when it comes to flavour If 'healthy' food tastes it's not being made / cooked / baked properly, or the ingredients are lacking in quality.

Changes don't all have to be made at once. And not to stir the pot, but you're having serious health issues, so your first thought should be for yourself, regardless of your husband's pickiness. From time to time, try some locally raised organic eggs, locally raised beef, locally raised chicken, locally caught seafood, locally baked sourdough bread. FRESH! Not processed This really is key. You WILL notice a difference in flavour & quality, as well as how you feel after eating.

Another suggestions would be to try hitting up farmers markets. They're fun, they have a lot of things besides foods, they often have great food stalls or food trucks where you can sample delicious stuff that's more on the healthy side, and you will quickly discover how different a locally grown organic tomato or head of lettuce will taste compared to the junk in the grocery store. That may be enough to begin tweaking your interest & taste for vegetables. And fruits! Never be afraid of raw fruit!

Yes ma'am, definitely praying for you & encouraging you to begin taking some baby steps towards health & happiness

Oh yes, I tried the "fresh produce" shopping approach, which worked for a while because of my husband’s European roots ~ he prefers fresh everything. But eggs are $13/a flat of 20 eggs ~ yes, the large brown eggs but still, I could only get away with that for a short while until things got really tight, financially speaking (my job cut all overtime for 2 months while they did evaluations, while rent jumped another $200/month so things got scary). We always try to get fresh bakery bread, if we can find it, but neither of us are early birds so that can be a challenge. The farmer's markets are way too early ~ I literally cannot get up and moving, and be cognitive enough drive that early ~ which is why I am supremely grateful I have a stay at home job! So, I have more hurdles than just my own food preferences. I would love to choose organic meats too, but the prices put them way out of reach.
I was looking at sample recipes from Michael Symon's book and some look good, but some I know I'll be eating alone, which also means extra time on my feet in the kitchen.
There are so many variables, but I know I will figure it out one or another. Our finances may change decide everything for us anyway ~ with one income, we don't know where we will be next year, if we will even be able to renew our lease again or not (probably not unless this financial crisis comes to a screeching hault). It's all just in the air at the moment Ironically, the only reason I can afford to go the various doctors at this time is because I spent almost 2 years feeding my Health Savings account at maximum deductibles from my paycheck + company contributions to = a balance that covered my insurance deductible and co-pays so I wouldn't have to pay out of my personal account. If it weren't for that HSA I wouldn't be able to afford to use my insurance ~ and I have been in that boat before.

 

[Cindy D.]

@Shelley D if you cook food for just you, make extra and freeze it. If you freeze cooked food as soon as it's cooled, it can lower the histamine reaction. You may find a histamine fb group to be helpful.

I have a lot less pain when I don't eat any sugar. I also can't have any coffee or chocolate of any kind. Eating Chocolate makes me have muscle cramps.


your money situation gets better soon. Have you checked into food assistance lately? They did change the income guidelines after the cost of everything went up.

 

[Shelley D]

@Shelley D if you cook food for just you, make extra and freeze it. If you freeze cooked food as soon as it's cooled, it can lower the histamine reaction. You may find a histamine fb group to be helpful.

I have a lot less pain when I don't eat any sugar. I also can't have any coffee or chocolate of any kind. Eating Chocolate makes me have muscle cramps.


your money situation gets better soon. Have you checked into food assistance lately? They did change the income guidelines after the cost of everything went up.

My mom has been trying to get me to meal prep for years ~ I've never had the foresight, patience, freezer space, organizational/planning skills, let alone the physical stamina required for cooking enough to have extra to freeze. My mom always had some kind of 2nd freezer somewhere in the house or out back on the porch or in the garage ~ I wasn't so lucky. I swear, I did not inherit one good gene from my momma ~ which is a crying shame because she's the most organized, energetic, go-getter I know! I always wanted to be more like her, and it just depressed me every time I failed to do so, and believe me I tried.
We did just qualify for food assistance, but we also just got our Overtime back at work so my income exceeds the monthly income limit so we will lose that assistance shortly. I knew it would happen and wouldn't be worth the trouble but my hubby said do it anyway so I did, and we got a couple hundred $$$ but as soon as I report my income they will look back and probably take some of that back because they paid assistance ahead through December fun times

 

[PaintyLiz]

I make salve for her chronic pain, which according to her is the only thing which helps after she had tried everything available in stores & many pharmaceutical medications, along with VITAMINS in large doses. Even then, she has worse days than some others, but she is better than she initially was.

Much love & healing to anyone suffering with 'unexplained' illness

Could you post the ingredients of your salve, or link? My friend's adult son is completely incapacitated by some type of rash/pain for years. I'm sure it's a jab injury from far back. Anyway, the only thing he will use is garlic because it's all that seems to work and he's rightly leery of pharma.

I thought maybe I could make some of your salve and see if it helped him.

thanks!
Liz

 

[Cindy D.]

My mom has been trying to get me to meal prep for years ~ I've never had the foresight, patience, freezer space, organizational/planning skills, let alone the physical stamina required for cooking enough to have extra to freeze. My mom always had some kind of 2nd freezer somewhere in the house or out back on the porch or in the garage ~ I wasn't so lucky. I swear, I did not inherit one good gene from my momma ~ which is a crying shame because she's the most organized, energetic, go-getter I know! I always wanted to be more like her, and it just depressed me every time I failed to do so, and believe me I tried.
We did just qualify for food assistance, but we also just got our Overtime back at work so my income exceeds the monthly income limit so we will lose that assistance shortly. I knew it would happen and wouldn't be worth the trouble but my hubby said do it anyway so I did, and we got a couple hundred $$$ but as soon as I report my income they will look back and probably take some of that back because they paid assistance ahead through December fun times

I just follow the regular recipes if they make enough for 4 or 5 people and freeze the extras after saving out enough for the next day... but if you don't have room there's no point. Lol, even us siblings all different. You have to do your best you, not anyone else. Comparisons aren't helpful
Luckily I did manage to get a few good things from my parents along with all the crappeist genes they have.
It's nice to have hobbies for a distraction!