complementary or alternative approach to lupus

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aulloa
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/23/2015 6:39 AM (GMT -6)   
Hi, I an new here. I have been living with lupus about a year now, and just now starting to accept it. I'm really don't have much of a support system, and kinda feel like I am a joke to friends, as if I use Lupus as a crutch. I don't overly discuss it, but on occasion when I bring it up, I get complete disinterest from others. They kind of roll their eyes as if to say here we go again.
the only time I mention it is if someone says "hey! Can you unload those five pallets of acid back there? Or something similar. When I express my limitations, due to the disease, I get the look. In work full time, on my feet up to 13 hers a day, sometimes several days consecutively. I really don't complain much, and push through the pain mostly. Even my husband, who at first was sympathetic, is now kind of over the whole lupus thing, as if, "shouldn't we be done with this by now?". I don't want sympathy or a pity party, I just don't want to have to remind others of my limitations. I feel like a cheerleader for lupus, then others are annoyed by it.
it is hard for even me to talk about how it disrupts my life, even I am sick of hearing it. I work in the medical field, so of course everyone is an expert. Many tell me, "cut out Gluten, or eat natural foods, or rhodiola root, anti inflammatory diet, chiro, herbal tea, etch. Has anyone had any luck with alternative approaches? I am willing to try anything, to stop hurting all the time, and to quit being the burden to others. Thanks for being a sounding board guys!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/23/2015 7:58 PM (GMT -6)   
I haven't heard of any alternative ways to treat lupus.

Being understood by others is so hard. I've given up trying to explain myself and my limitations. I left my job because my boss couldn't understand that I needed to limit my exposure to UV Rays and to sit down when needed.

It's taken 3 years to get my family to understand me. They now understand that some days I just need to rest.

Have you seen "The Spoon Theory" article? It's good to use to explain Lupus.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/24/2015 1:49 AM (GMT -6)   
Hi aulloa,
I thought my body was dying Oct 2013. My bones felt like you could snap them like a twig, the stretching of my tissues between my knees was unbearable, I used the hand rail to climb the stairs , my back was so weak in the morning,I would walk my hands up my body to get out of bed. Many,many symptoms followed the next few months.

I went gluten free Jan 2014, and I thought a miracle took place. I was on such a natural high that not eating this molecule found in flour would stop the unexplained pain. I really wanted to wear a t-shirt - ask how me how gluten free changed my life, and it did.

The theory is the gluten molecule looks/mimics just like the invaders such as a virus or bacteria Our body's defense system attacks these gluten molecules entered in our blood stream from the intestines. I believe the by product from the killed cells nucleus causes the inflammation.

March 2013 I tested pos on the ANA test (results were1:80) but the Rheumatologist thought it was osteoarthritis with degenerative joint disease. My symptoms of Lupus came after her visit, I called my Rheumatologist in May of 2014 to share this discovery of not eating gluten. She told me some of her RA patients notice a difference too. (I wish she would of told me that a year earlier)

Today I went back to my primary care for another ANA test. The experience I had from the sun last week affected my heart- it felt swollen and the surrounding parts, deep breaths-the air exchange felt so light, and I have not had the squeezing organ sensation since last year(really hate that symptom). I conducted an experiment with the sun because my Rheumatologist is so adamant that I do not have Lupus,but I have or had soo many Lupus symptoms.
Good luck and you can do this- I noticed results the first few days:)
Please ask me anything. I am figuring this out the alternative way and I noticed the Docs and nurses have such a negative opinion. I am surprised in the mistreatment of getting sick and the whole diagnoses process. It is so sad.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/24/2015 2:48 AM (GMT -6)   
I read Dr. Susan Blum Immune system recovery plan. She explains how toxins ruin our insides and the importance of the elimination and detox diet. A virus or bacteria may have taken over our body and needs to be flushed out. I had a tooth infection so bad with all the infection stuff hidden in my gums that the dentist sent me to the doc to for further exam. He said he saw a correlation with this infection built up and breast cancer. Did not get breast cancer,but this thing or entity took over my body. Her book has shed insight on the common denominators for these illnesses and gave me the fight plan to get control of this disease.

I ordered a detox kit thinking and hoping it will take care of the weakness of my bones and tissue.Also, I am staying out of the sun until test results are back.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/24/2015 5:19 AM (GMT -6)   
I have detoxed, gone gluten free, tried paleo, been a vegetarian, taken probiotics, done acupuncture, bio feedback, taken supplements, eaten anti inflammatory foods, avoided GMO, juiced, meditated, fasted, prayed to Buddha, Allah, God and The Flying Spaghetti Monster and sadly I still have UCTD.

Some of these things have helped but nothing has had an impact that makes me run through the country side singing the hills are alive with the sound of music.

Eating healthy, staying active, being hydrated and getting adequate rest have been the recipe that has helped me have more "good days" than bad. Common sense based and basic stuff. Avoid stress, learn to deal properly with stress and emotions... this is numero uno as far as I am concerned. Stress is toxic, plain and simple.

For me all the alternative measures were just another thing to stress about. Some people love it, myself not so much. Measuring and reading labels, spending hours researching and organizing just what one is to eat on a daily basis... ugh! The results weren't worth the effort in my experience.

Acupuncture helps with pain and circulation, this is my go to although it is not a magical cure, it is pain management.

Probiotics have helped and are good for some. They are not a cure.

Gluten free may help IF you have a gluten intolerance, same with dairy. Not everyone has this though.

Eating lots of fruits and veggies, natural foods is just plain good for you as is drinking lots of water. Don't forget your protein too tho, man/woman cannot live to fight autoimmune disease on broccoli alone!

Get your fibre, things backing up are never good.

Keep moving so you will not rust up, keeps your gears oiled and mobile.

Treat yourself well. Embrace your good days. Embrace your bad days and snuggle up in a blankie and don't feel bad about it. We are harder on ourselves more often than not.

Sleeeeeeep. 'nuff said

Shrug off those that don't understand your illness and your struggle. They don't get it, they are lucky. They don't need a rocket launcher to propel their butts out of bed almost every stinking morning. Reward yourself and be proud of the strong and amazing person you are. You have nothing to prove to anyone else. Screw 'em.

Like I said, simple basic stuff. Maintenance yes, cure no.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/24/2015 7:21 AM (GMT -6)   
acuiesce said...

Eating healthy, staying active, being hydrated and getting adequate rest have been the recipe that has helped me have more "good days" than bad. Common sense based and basic stuff. Avoid stress, learn to deal properly with stress and emotions... this is numero uno as far as I am concerned. Stress is toxic, plain and simple.

For me all the alternative measures were just another thing to stress about. Some people love it, myself not so much. Measuring and reading labels, spending hours researching and organizing just what one is to eat on a daily basis... ugh! The results weren't worth the effort in my experience.


Well, said, acquiesce! Also agree with the parts I haven't quoted but this is the most important part!

The simple things have helped, that is mostly what I stick to along with the treatments my Dr suggests. Eating healthy, moderate exercise, deep restorative sleep, plenty of water...minimizing stress.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Post Edited (Lynnwood) : 4/24/2015 7:13:01 AM (GMT-6)


Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 4/24/2015 3:37 PM (GMT -6)   
I totally agree with acquiesce also. I went 100% gluten free for over a yr. I lost some weight and had less indigestion but that was it. It didn't help with ANY of the other problems, if anything it made things worse because it was stressful to track every friggin thing and watch others eat what I really wanted to eat as well. After 1yr I was highly frustrated that it wasn't working, gave it up, and made up my mind to see a PCP.

My rule of thumb is to do more homecooking with the basics. No high sugar drinks. Eat in moderation and keep variety in my diet, though I struggle with the variety. I think it's a good idea to cut back on gluten, I just don't think it's the end all be all cure all for everyone and their symptoms. If you read up on celiac disease the symptoms can be very similar to autoimmune connective tissue diseases and avoiding gluten thinking it will be a cure, will only lead some people down a rabbit trail and a longer journey towards a proper diagnosis.
Diagnosed with SLE lupus October 2014.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 4/24/2015 5:02 PM (GMT -6)   
Well said. If it were as simple as diet or supplements or whatever, there wouldn't be 1.5 million of us with lupus in the USA. Lupus is an autoimmune disease of unknown cause and if you have it the disease it is your "friend" for life. Fortunately, most of us find a treatment that works but there is nothing that can cure it. Lupus can go into remission with or without drugs and many will conclude that "such and such" treatment was the reason which is almost always not the case.

Gluten free has been shown to be the most effective treatment for celiac disease which a lupus patient can also have. Some go gluten free or paleo (exactly which paleo? since early man ate everything less the chemicals). Eskimos have eaten mostly high fat diets with few veggies or fruits and yet were very healthy until being exposed to Euro diseases.

All of us should eat a balanced diet, control our weight, avoid refined sugar, avoid refined flour, salt, certain fats, and processed foods in general. I violated all of these today except for sugar by eating at Wendys because I was in a hurry.

Diet is very important for our general health but not as a primary treatment for lupus in my opinion.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 4/24/2015 10:48 PM (GMT -6)   
I just reread my writing and wanted to clarify that I didn't mean gluten free doesn't work for celiac disease. I just meant the similarities between the symptoms could very easily lead someone to believe they have something they don't actually have. Gluten free is great if it works for you. But isn't necessarily effective for lupus patients who don't have celiac.
Diagnosed with SLE lupus October 2014.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/25/2015 3:48 AM (GMT -6)   
Thank You for sharing
Its all so confusing, and startling to read all about the potential meds that I may have to take.
I hope yesterdays blood test will show better indicators to celiac/lupus or both? The last ANA was pos 1:80 ( March 2013) This month I had more intense symptoms with my heart, breathing and tissue swelling,.. I really think the sun triggered it, so being scared again with no answers from doctors, I requested another blood test to help solve the mystery going on in my body. I'm afraid one day the violent activity attacking my insides won't stop.

thanks for the dietary input- The few times I researched Lupus/Celiac the symptom similarities are so close. Yes, for me the restrictive diet and learning about stress has made my life functional.
Thanks again

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/25/2015 1:20 PM (GMT -6)   
You might be like me in photosensitivity. I'm very photosensitive and have to go beyond most others in my UV protection. Because it's uv rays that trigger my sensitivity I have to wear clothes with built in protection, a wide brim hat, and gloves. I buy them on the Web at coolibar.Com.
I use only LED bulbs in my house, because other lights affect me. I have room darkening curtains because sunlight coming through the window affects me too.
I can't get near a halogen bulb. It drains every bit of my energy and I get the shakes.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/25/2015 1:45 PM (GMT -6)   
Thank You couchtater,

I am going to avoid the sun and check out those protective close:)
Do you know if this is when meds are needed to stop the immune system from turning on its self? So far I had to ride it out, but last week Whew! that was rough:( After 48-56hrs the organ issues stopped, than just regular bone ,joint, tissues to deal with. They say I have osteoarthritis thou.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/25/2015 2:39 PM (GMT -6)   
Glutenfree33,

Have you talked with your rheumy about treating your Lupus? Most of us are on Plaquenil from the get-go, this helps slow disease progression.

Generally a steroid, such as Prednisone, is the second line of defense against flares where the immune system is running wild and causing a lot of inflammation.

If the inflammation and other disease symptoms are not controlled quickly by Prednisone, the third line of attack is generally one of three meds, Cellcept, Imuran, or MTX. Some people need to try all 3 of these before finding which one works for them.

After that, there is Benylsta and something else whose name escapes me at the moment.

So lots of option are available! Hope you feel better soon!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/26/2015 4:26 AM (GMT -6)   
Hi Lynnwood, Thank You

Unfortunately, I had the type of Rheumy that did not look at all the pieces of the puzzle. In fact, I called three times last summer giving her a list of Lupus symptoms I developed after seeing her and I tested positive 1:80 homogeneous pattern then. She said not Lupus its something else. So she sent me to start over with primary care. My primary care ordered another ANA and she is cluless about the disease.

That is the big question for me, If my symptoms are not active do I need the medicine, or can I take it when their is a flair.

Like today I do not feel like I have legs of a very old person. I do not feel the weakness of my knees and shin. They feel like normal legs. Last week, I had to use the hand rail and just pull.

I am so confused when my body feels so normal on some days. Than, there are days my bones feel as if they are going to crumble, or my back goes out if I bend over for something.

Do you know if that sore bone feeling and connective tissue swelling means my immune system is in continue attack mode?

Thanks again Lynnwood

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/26/2015 7:51 AM (GMT -6)   
It sounds like something is going on. I would find another rhuemy.

One way to find one knowledgeable with Lupus is to visit www.lupus.org and find the local chapter for your area. Then contact the local chapter and ask about what Drs are active on their local advisory board. These will be the Drs in your area who know about Lupus.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/26/2015 9:56 AM (GMT -6)   
Thanks Lynnwood and happy I found you guys:)

aulloa
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/26/2015 12:28 PM (GMT -6)   
Thank you guys so much for the information. I am going to make some changes. I am going to see a chiropractor next week as well, and looking into anti-inflammatory diets as well. I have heard a rumor that cutting out gluten makes a big difference. I am going to give it a shot, I have nothing to loose but the pain. Thanks so much for the feedback, it's so nice to be understood for once.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/27/2015 12:40 PM (GMT -6)   
Hi,
I am scared to go in the sun. I wanted to walk two blocks over to check the mail, but going to wait.

I read a reply the slightest sun exposure can trigger a flair. Is this how it is for anyone else with Lupus.

I laid directly in the sun for 45 min for 2 days in a row, and 36 hours later my heart felt swollen and the surrounding area . I will not do this experiment again.

Last summer ,I recall organ pain-like a hand gripping inside of me, and a grinding sound under my rib cage and neck. Or heart issues, breathing problems, and increased urge to urinate?Does this sound familar? and Does the sun provoke the internal organ issues? It seems to with me.
Thank you for your opinions and valued input:)

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2015 1:17 PM (GMT -6)   
I can't say that sun exposure made me feel like my organs were hurting, but it can make me feel extremely tired and like I've been flattened by a steam roller and unable to get out of bed for 2-3 days. The fatgiue can linger for 2-3 weeks, and that's just from 2 hours in the shade near water.

I'm sure something like lying in the direct sun would put me in a very precarious position and I have NO interest in trying it!!! (Of course, I'm a very pale blond and that much sun would have put me out of commission years ago, long before I contracted Lupus!)

Overall, it doesn't really matter if lots of sun can provoke the organs or not, 'cause you aren't going to try that again! lol
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/27/2015 1:29 PM (GMT -6)   
Hi Lynwood,
lol no more:)

I

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/27/2015 3:21 PM (GMT -6)   
Do you wear sun protective clothing? I can tolerate some sun if I wear my sun protective clothing, hat, and gloves.

I would never lay out in the sun now and I used to be a sun worshiper.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

aulloa
New Member


Date Joined Apr 2015
Total Posts : 4
   Posted 4/27/2015 4:25 PM (GMT -6)   
Glutenfree33,

you should definately get a new rheummy. The thing with plaquenil is that it helps to control flairs. Imagine a wave pattern and it spikes up and down rapidly. These are your flares without plaquenil. Then imagine lower waves, and further apart. This is what plaquenil does. It reduces the intensity of flares and spreads them out further. Plaquenil has to build up in your system and can take anywhere from 6 weeks to 6 mos. your rheummy should be checking your cmp(complete metabolic pannel). This will show mostly kidney function. She should also be checking sed rates, this shows inflammation in the body. She should also be looking at your complete blood count or cbc. These will show how your iron, is how your red blood cells are and how active your white blood cells are. Wlastly, she should be checking your complements. c3 and c4 being elevated will give a good indication of what the body is doing inflammation wise.

As for your question of weather you should be taking meds, yes and no. If you have major inflammation that is affecting your organs, then yes, you should be taking prednisone immediately to tackle the inflammation from causing major damage. As for plaquenil, it is good to help minimize the flares, but if there is no inflammation, plaquenil is a moot point.

Hope this helps. You should read up on a few of the tests used by rheumatologist to keep track of things. It will make tho vs much easier to understand when talking to your physician. They are human, and fallible, you are your own best advocate.

Post Edited By Moderator (Lynnwood) : 4/27/2015 5:40:15 PM (GMT-6)


glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/27/2015 4:53 PM (GMT -6)   
Thank You aulloa,
I did not research lupus at the beginning. I was a healthy person trying to explain pains of this and that organ system to health professionals and the reception was not a good. I think I was a small snowball of symptoms that grew into something that is getting to big to handle. Now, I have learned that being an active roll in figuring out the problems of my body is key:). I did look up some lab test and found interesting results separating lupus from fibromyalgia.

My primary care said she could not prescribe these drugs so I hope to get a rheummy in the local area this time instead of 90 miles away.

glutenfree33
Regular Member


Date Joined Apr 2015
Total Posts : 24
   Posted 4/27/2015 5:01 PM (GMT -6)   
Thank You couchtater,
I wear a hat but was not gloves

So if I walk or ride my bike I need to have the skin on my face and hands covered too?

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/27/2015 6:38 PM (GMT -6)   
It depends on how sensitive you are. I am usually fine using a 45-50 sunscreen, but some people need protective clothing as well. Not all of us have the same amount of sensitivity, so you have to try & see what works for you.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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