I have just spent a couple hours on the phone with my doctor and a specialist he found. After going over my records and the reactions I have to so many medications the specialist basically said that none of the medications used for treatment of Lupus are ones he would feel comfortable prescribing for me. He is willing to track me and help me work with the essential oils that have worked for most things but he won't prescribe anything other than the pain killers that I'm on and the muscle relaxer that I'm on. I'm now going through and researching other treatments for Lupus and feeling like I'm running up against a brick wall. I just wish I wasn't so tired, and my brain didn't feel so foggy. The brain fog is the hardest part for me. I'm not used to not being able to figure things out quickly. Now I have a hard time thinking of how to tell someone what is hurting. Is this brain fog something that is normal or is it just because I'm in a flare and not getting sleep?
I had brain fog bad before the Dr put me on Imuran. I hope you feel better and they figure it out
I have never been on meds for lupus, by choice, I was diagnosed 25 years ago. Read my reply to "Hi from Doggie" , then go to bed for 2/3 days and sleep days and nights and sleep, sleep, sleep. you will wake up feeling so much better. That's how I have always got my flares to stop.
Keep out of the sun and away from artificial UV lighting ie: fluorescent lighting etc. Stay away from situations that stress you and get plenty of sleep and rest. This how I have always managed to keep number of flares down over the years. Good luck.
Lupus fog is a real issue. I am in the same boat as you. I've had lupus all my life, and it's back many generations in our family. I can't take many prescriptions though, so I spend my life researching natural remedies. I ask the Dr.what does this medicine do that you want to give me, then I don't fill the prescription. I go home and research natural things that do what the medicine will do. There are MANY natural anti-inflammatories out there. One that's good for pain is curcumin, which is concentrated turmeric in capsules. I am also impressed with Krill oil, which also heals the brain, lowers cholesterol, anti-inflammatory for pain and for anywhere in the body that has inflammation. Right now it's my blood vessels (vasculitis) in body and brain, and within 4 days my dizziness was cut in half and my massive bruises from the inside, and my face rash were all cut in half. For the lupus brain fog, I have found that ginkgo biloba helps me a lot. I take 120 mg. The 60 mg pills didn't do much. Ginseng also helped me. I can sure tell on the days that I forget my ginkgo.
Don't give up. There is always something else you can try that might work well for you. I have a drawer of supplements for various symptoms, and just treat what I can and bear through the rest.
I began treatment for Lupus just about a year ago. I take Plaquinil, Imuran, Prednisone, Ambien, and vitamin supplements. In additon to the medication treatments, I have changed my eating habits tremendously. I am so much better than I was last year, but I can't tell you whether it's the meds or the diet. Also, the Lupus Fog is not a myth - I have to write everything down in multiple places, or I forget even simple things. Like Maggi-Mae, I avoid the sun (and heat, as well, as it turns out!), and like Sheila W., I take Ginko Biloba and Ginseng. Cool showers help also.
Don't give up! Try everything until you find something that works for you. If you can't take the medications, go on to the next "thing".
Oh yes! Like Idioskosmos said, diet changes help. There is an actual autoimmune diet, but I don't have the strength to follow it and prepare food that it suggests.http://aiplifestyle.com/what-is-autoimmune-protocol-diet/ I just know that sugar and white flour make my pain worse, and I had to slow down on beef, as it messes with the PH level in your body which can cause more inflammation. Lupus is a disease of inflammations that move from one part to another very quickly and very often. Before diagnosis, I agreed with the doctors. Maybe something was wrong with my head. How can I have a swollen ear lobe in the morning and doubled up with chest pain a few hours later? No prediction on what will hit next. But after the diagnosis, the Dr. said yes, that's how lupus works. Controlling inflammation as much as possible will lessen the symptoms.
I don't actually follow an actual diet - my mantra is "processed food bad", "unprocessed food good" (lol - I sound like a caveman!) I found that a lot of spices have many health benefits - including anti-inflammatory properties, and try to use them as often as possible when I cook. I have not cut out white flour at all, and I have only cut back on the white sugar. Those two are the toughest to kick!
Sheila W. said:
Oh yes! Like Idioskosmos said, diet changes help. There is an actual autoimmune diet, but I don't have the strength to follow it and prepare food that it suggests.http://aiplifestyle.com/what-is-autoimmune-protocol-diet/ I just know that sugar and white flour make my pain worse, and I had to slow down on beef, as it messes with the PH level in your body which can cause more inflammation. Lupus is a disease of inflammations that move from one part to another very quickly and very often. Before diagnosis, I agreed with the doctors. Maybe something was wrong with my head. How can I have a swollen ear lobe in the morning and doubled up with chest pain a few hours later? No prediction on what will hit next. But after the diagnosis, the Dr. said yes, that's how lupus works. Controlling inflammation as much as possible will lessen the symptoms.
Hi, you could try reading everyday which helps and taking tumeric, gringo, ginseng and some vitamin supplements b12 helps. Prayer with help you a lot and giving yourself a mind quiz on your everyday activities, what you like, your medicines and all the things you have a difficult time remembering. I hope this helps, you will be in my prayers,
Diet, that's something I didn't even think about, I have always had fresh food, it's just the norm for country living in New Zealand, I never buy processed food, it doesn't have the natural flavors and textures anyway.
Might have been a different story if I had lived in the rat race of the city where everything is rush, rush, stress, stress.
Idioskosmos said:
I began treatment for Lupus just about a year ago. I take Plaquinil, Imuran, Prednisone, Ambien, and vitamin supplements. In additon to the medication treatments, I have changed my eating habits tremendously. I am so much better than I was last year, but I can't tell you whether it's the meds or the diet. Also, the Lupus Fog is not a myth - I have to write everything down in multiple places, or I forget even simple things. Like Maggi-Mae, I avoid the sun (and heat, as well, as it turns out!), and like Sheila W., I take Ginko Biloba and Ginseng. Cool showers help also.
Don't give up! Try everything until you find something that works for you. If you can't take the medications, go on to the next "thing".
Thank you all for your replies. Thankfully I have a son that grows all organic vegetables and we prossess and freeze or can them as they come into season. I have a freezer and pantry full of them. My husband has discovered the joys of baking homemade whole wheat flour bread from the flour milled from the family ranch. He likes to use the yeast from his beer brewing. Staying out of the sun is going to be hard on me since I love being outside and enjoy the flowers and yard that my son has fixed up for me. Yesterday my dear supportive husband went through and replaced all the floresent lights with LED lights in the rooms that I go into. We used some cumin oil on my hurting joints and my stump and this morning I was able to get my prosthesis on by myself so I'm finding some things that are working. I would love to do the showers but with the prosthesis getting in and out of the shower is a major undertaking and not worth it. After the spring rush my son might have time to put in a walk in tub for me. We had talked about it right after I lost my leg but I adapted so quickly to moving around we decided against it. It is looking like we might want to do it now since my husband has to life my leg for me to take a shower. I am using frankinsense oil to help with the brain fog and am thinking clearer today. Prayers are also helping
Ann I am shocked again and again at all we have in common. I have post concussion syndrome along with fibro fog and lupus and thyroid fog. Sure makes me feel stupid! Once your thyroid is raised, it helps a TON. Some people are happy with the drug that is given for hyperactivity, they say it helps their brain fog. Some mentioned a new one and my brain fog forgets the name, starts with A, it helps shift workers and narcolepsy sufferers, and helps sleepiness and brain fog. I prefer my natural stuff.
Since I react to medications so drastically any doctor that is willing to check my records or listen would much rather try to find a natural way to deal with any problem that comes up. I have gradually built up an extensive library on essential oils from studies all over the world. It is amazing what is being discovered in a lot of regions and tested in several universities. When you add in other non chemical treatments it is amazing what can be done. While I have just started my research in ways to handle lupus without chemicals I have been pleasantly surprised in the number of studies that are going on or that have been done. Some with helpful success others with doubtful success, about the same as with chemicals. I have started doing some of the suggestions using the oils since I have most of those and have been surprised with how fast I'm reacting to them. The first thing I noticed was the clearing of my brain fog. That was almost over night, now to see if it stays clear or if it was a fluke. I'm praying that things work and this flare gets under control soon.
Lupus “fog” can turn into Lupus Psychosis. It’s very real and treatable if caught early. Lupus got into my brain and I had a stroke. I am on lupus meds, but am always researching for alternative options because of the side effects. I have found Ashwagandha root helpful all around, and because the stroke hit my left brain, I take Megared Krill oil, which does seem to be helping with the fog as well as the memory issues of both lupus and the stroke.
I am not a doc and wouldn’t tell anyone to take anything without seeing a doc, but always like to let fellow lupies know when something works.
And I am just going to say, that based on the fog symptoms, you may want to get a second opinion.
I don't think Lupus fog turns to psychosis very often. So any of us have had Lupus fog for decades without a bout of psychosis or stroke. Whathappemsinvegas, I'm gad to meet someone else that krill oil is helping.
Hi everyone.
Haven't been on in a few weeks. I had total knee replacement,
IDoggie, can't you get a shower chair to use in the shower. I thought I was going to have to get one. but we can put a chair outside the tub and I can swing my legs over and stand in the shower. It seems like that shower chair would help you.
I have SLE take only plaquenil and I guess that helps the joint inflammation. The fatigue is bad most of the time but I don't sleep consistently. Dr in hospital put me on ambien but I don't want to take that long term. I have an addict daughter and I won't become one. My dr checks my cbc often. I am a little anemic but not quite bad enough to get a prescription, besides iron interfers with calcium,
Take care everyone.
Cindy
Sheila, you are right, that many people don’t have psychosis, but many may have episodes…I ended up only knowing about it after it happened. I had a lovely conversation with my b.i.l. a couple oh holidays ago, wish he’d been there to enjoy as well.
Plaquenil and the Prednisone helped immensely, but it doesn’t look like Doggie is getting anything to help with that. It’s worrisome.
I wish docs realized just how foggy the fog can be.
I am just starting the krill oil and am very hopeful.
Cindy, I do have a shower chair. My problem is I can't lift my leg over the tub edge. I lost my right foot just above the ankle almost three years ago so I have to sit on the shower chair. I had a bad fall in February that bruised my hip real bad. Because it wasn't healing and the pain was getting worse is why my doctor did a panel of tests to see if I might have lupus. He had been keeping an eye out for it since from what I gather a lot of people that survive septic shock developed lupus and I already had fibro and RSD. The energy it takes to get out of the wheelchair onto the shower chair and seeing into the shower and and then reverse it or put on my prosthetic leg wears me out right now.
I noticed that krill oil is one of the ingredient in the multigreen capsule that is recommended for lupus. My fog has disappeared mostly since starting frankincense. I'll be seeing the rheumatologist Friday. I had to fax him permission to go through all my records. I hope he doesn't go running the other way when he sees all the times that I had allergic reactions to medications while in the hospital those 8 months. He might better understand why my GP prefers to give me the diagnosis and let me search for the natural stuff.
Sorry to hear of all your struggles.I guess you will find the right "mix" to help you.
Cindy
Frankincense? I have fog a lot…starting to cause problems at work. …
Frankincense essential oil either on your forehead or if it is medical grade taken orally works best but know where it comes from before you take any essential oil internally.