I’ve been sick 20 yrs. not sure if I have flares or not. I also have fibromyalgia but there is never a time I don’t feel severe pain and severe fatigue. Sometimes I have more of each but how do I know what’s a flare? What I consider a flare is maybe 20 percent worse than any other day. Mostly bedridden and little life going on outside the home. Doesn’t seem to be much of a difference. I’ve heard some patients never really change into flares but it’s frustrating. I’d love to hit a period where the symptoms were less some time. All we have ever tried was plaquenil. Seems like there’s just something else we can try besides muscle relaxers, pain killers and plaquenil to see if I can be put Into a better state of being. Dr thinks status quo is ok. I don’t. Labs look ok so he doesn’t suggest anything. I suggest a life. Lol. What has anyone else tried in this situation and did it make a difference?
We are in a very similar place - I was diagnosed 15 yrs ago w/fibro and arthritis-based orthopedic problems, but only got the lupus DX about 5 yrs ago – and on a steady diet of plaquenil, muscle relaxers, narcotic pain meds, and anti-seizure drugs for neuropathy pain, I still have such bad pain & fatigue daily it’s not always apparent when a lupus flare is starting. And from what I’ve read here, what a flare can mean can vary greatly not only from person-to-person, but also during the course of one’s life with lupus.
For me, up until the past month, a lupus flare had always meant exceptional pain in joints - especially my knees, wrists, fingers, shoulders, & feet - accompanied by fevers (ranging from low-grade to high, depending on the flare,) headache, and worse than usual fatigue - like “no way I’m even getting out of my pajamas today” fatigue. My knees always swell up - in fact often that’s my first warning sign. I thought this constituted the definition of “flare” for me, until two weeks ago, when I was hit with a really bad bout of something I used to get occasionally right around the time I got my lupus DX, Atypical Trigeminal Neuralgia. It’s a very painful facial nerve inflammation, and I know now it’s not uncommon for people with SLE to get TN or ATN, plus I had a fever the whole time, so I guess technically that was a lupus flare as well. It was the first time I’ve used anything but plaquenil directly for the SLE - my dr. prescribed a 6-day course of cortisone, and while it wasn’t fun, it seems to have largely worked, so I can’t complain - anything is better than the TN pain.
I think it’s almost impossible when you have active fibro and lupus to ever really totally tease out what’s what, and I totally get your frustration at how it has impacted on your quality of life - it’s very very hard. I might suggest if you think your dr. isn’t taking you seriously that you get a second opinion, a workup by another internist or rheumatologist, whoever you can go to that you have some trust in. I think sometimes our drs. get into a mode after a while where they are seeing us, but not really SEEING us, you know? And that can even be dangerous, if symptoms are overlooked that really need to be treated aggressively. (Quick example, last winter I had pneumonia, which can be serious for lupies, & my GP, who was swamped with people with flu, etc at the time, didn’t even do an X-ray, just sent me home w/meds - not even a recheck. At a Cardio workup last summer, I learned I had sustained an area of damage to my heart from the pneumonia.) Sometimes we have to be a little more pushy than we’re comfortable being to get the health care we need. Good luck, and I wish you all the best, & send lots & lots of sympathetic hugs!!!
Lupie, HellionGoddess has given you some very good advice. This site is wonderful about helping you find new approaches to treatment. I am so sorry you are going through such a tough case of Lupus and fibro. I read of people who have the mildest case of lupus and then I read of the difficult cases (such as what you have and I have). I think it is so helpful to read member profiles and find some "Lupans" whose symptoms parallel your own. There are a lot of members out there similar to you. I was diagnosed with SLE and fibro in 2006, but I think I had both diseases for over 25 years. I just pushed myself (through the pain and fatigue) to go to work every day and soldiered on until my body just collapsed and I had to have answers from medical specialists. You are in the right place to get information and feedback. As I used to say in the early 70's, "Keep on keepin' on!" All the best, LupanCatwoman Gail
I’m in a similar situation. I’ve spent most of the past few years in bed. I push myself to take care of my kids and have nothing left for housework etc… I finally got really angry at my new rheumy and told him I have no life. I don’t care if I get cancer 20 years from now from the meds I need to function now, while my kids are young. My last doc was fantastic and would put me on IV cytoxan as soon as I started feeling bad. This doc refuses to go by how I feel and instead goes by labs. My lab work has never correlated with how I feel. I get so frustrated with Kaiser because I have been in a flare ever since my husband’s work switched health plans. Before I had one doc who took care of everything now I have 5 to do what he did. Really frustrating. If the cellcept doesn’t work, I may have to go over his head to get cytoxan. I’m tired of being in bed. You sound like you need something much stronger than just plaquenil. I can’t imagine trying to control it with just that. I take plaquenil, provigil for the brain fog and fatigue, sertraline for depression and fibromyalgia, trazadone to sleep, norco for pain, and now cellcept. I tried rituxan but it didn’t last long enough to justify it. You might have to write to your doc and tell them exactly how bad your life is. I hate making a ruckus but if we don’t advocate for ourselves, no one else will. I really hope you get help soon. Gentle hugs, Annemarie
40+ years for me. I haven't had remissions. I consider a flare to be when I am much sicker than usual or have much more inflammation. Prescriptions just make me sicker, so I had to find natural substitutes for whatever medicine was going to be prescribed.
I'm not prescribing...just mentioning what has helped me and my mom and sister.
The way I found out I had Lupus was when I found out my kidneys were going I was first Dx with Vasculitis and finally ended up on dialysis in 1992 and since then I have had 2 kidney transplants and lost my second kidney after 18 years now I am back on dialysis and the transplant waiting list , When I read posts on this site I sometimes wonder about my Lupus Dx because I don't seem to have many flares that cause me pain although I do have Fibro and Spinal Stenosis which cause pain all the time so like so many posts I read it's really difficult to tell which of my diseases are acting up. So I understand what you are talking about Lupie. Sending hugs and prayers. Take Care!
Yes very similar! Wow. Same things about how possible flares feel. In edition to normal crap. I have had for two years now horrible jaw pain from tmj and who knows what. And then there you go having a serious complication from the pneumonia and instead of being doubly concerned because of lupus, it’s overlooked. Smh. What’s frustrating is being an RN I know how medicine is supposed to be practiced. There isn’t enough time for the dr to keep better watch on patients. We do have to advocate for ourselves for sure. My dr is well know nationally and deals with people ready to drop dead so I don’t think I’m too worrisome to him. Good news is he’s brilliant. Bad news is I can’t get his full concern. Not unusual for that circumstance. But I think I will write some notes and try again next time. He said he didn’t want to give me meds to make we sicker. I said I’d like a life. It’s great to be able to talk to others. Thanks!
Hi Lupie, and welcome to the group. I was diagnosed in 2008 when I had a stroke after spending 10 days in the sun at Walt Disney World, which let loose the Lupus monster. Until then I would get really sick to where I couldn’t get out of bed for a month. Those month long flares came about every few years. Long before this, I have had doctors say they thought I had Lupus but always came back saying I didn’t. I have been sick since I was a child, but was never diagnosed with anything except a bad heart. I have had 2 heart surgeries. I am currently on about 24 or 25 meds including Retuxin infusions. I take Plaquenil too, and am on Prednisone for life. I have been in a never ending flare since 2008. Sometimes it’s worse and I can’t walk so I have to use my power wheelchair or just stay in bed. My days always end with a malar rash as I head off to bed. My wife thinks it’s because I’m worn out from the day. If only my flares could happen while I slept. I just live moment to moment and try to enjoy the good days or hours or minutes when I get them.
God bless you
Lupancatwoman and Annemarie , that’s just the thing. I feel it’s a quite serious case going by what I feel. The labs say I’m good. I start to question my sanity and why I can’t talk myself out of it then. Like you both said, you push yourselves and then what do we have? Bigger issues. We have to take care of the family and we don’t take care of ourselves. I always hear a lot of people taking different meds and asked if I could. He thought about Lyrica. Doesn’t want to create problems by adding anything. Best day of my life the past 20 years was when prepping for a procedure I got solumedrol iv beforehand. Not one cell in my body hurt for the ten minutes I was awake. It was amazing. I’m all for prednisone. Gonna have to push new meds issue next trip.
Sheila, I do take vitamin d and it was a lifesaver for the bone pain. I didn’t have hardly any when I started it. My body doesn’t absorb it so not a lot higher but bone pain better. I’ll look into the list.
Mama Cindy, going for your 3rd transplant! You are courageous and strong! Autoimmune diseases are so so similar it must be hard. Maybe lupus just attacks your kidneys even more than causing pain. That’s frustrating in that every lupus patient is different in the symptoms. Makes it harder. It’s like we just treat the symptoms and it doesn’t matter the cause anyway.
Thank you all for the kind words, encouragement and information. I’ll be busy planning my next attack on the doc. Lol. Thanks!
Cameron, I think we have discovered the cause of lupus! Disney World! I got sick 20 years ago in Disney World. We stayed in the park and I couldn’t make it down to the pool the first day! First sign there was a problem. That’s it. The mouse did it!
On the serious side, a stroke and two heart surgeries alone would be enough to keep anyone down! Forget the autoimmune part! And then the drs can’t decide what’s up! The frustrating thing too is very little money is going Into the development of drugs and research compared to cancer etc! One drug in fifty years is completely not acceptable. Being as sick as you are since 2008 not acceptable. What is great is the fight you have to appreciate every moment! The fact you never give up. That’s encouraging to everyone! Thanks!
LOL! ! 8o. Stupid rat. I think it was beimg in that sun all day for 10 days. I have Photosensitivity too. I used to always get this rash on my left arm and couldn’t figure out why until the diagnosis. I drove with the window down and rested my left arm on the door.
Lupie said:
Cameron, I think we have discovered the cause of lupus! Disney World! I got sick 20 years ago in Disney World. We stayed in the park and I couldn’t make it down to the pool the first day! First sign there was a problem. That’s it. The mouse did it!
On the serious side, a stroke and two heart surgeries alone would be enough to keep anyone down! Forget the autoimmune part! And then the drs can’t decide what’s up! The frustrating thing too is very little money is going Into the development of drugs and research compared to cancer etc! One drug in fifty years is completely not acceptable. Being as sick as you are since 2008 not acceptable. What is great is the fight you have to appreciate every moment! The fact you never give up. That’s encouraging to everyone! Thanks!
Lupie and Cameron, you’re going to have to add Hawaii to your list of bad places to go if you have lupus. My husband and I went before we were married and I got a sunburn that triggered the worst vasculitis flare I’ve ever had. I was literally burgandy from the waist down. I got a bad sunburn, then we went on a horse-back riding tour of waterfalls, swam in some really beautiful ones too, they were freezing cold, put my jeans back on to ride back and by the time we got back to the trailhead I could barely walk. I had to hide from the sun the rest of the trip. This was before my dx of lupus but well after the dx’s of Sjogren’s and fibro. I think it was this reaction that led to the dx in fact. So while I would happily join in on blaming the mouse, there was no mouse where I was…lol
There’s a WDW in Hawaii isn’t there? Yeah, it’s the sun. I used to hike and be in the sun all the time when I lived in California, but it I only got small flares and not enough off the list of symptoms to justify a Lupus dx.
I was born n raised in CA and now live in the foothills about 45 minutes from Tahoe. I never really had a problem with the sun until I got older. I grew up horse back riding, swimming, running around out in the sun all day long and never really had a problem. I did get minor vasculitis flare ups on my legs but it didn’t knock me flat like it does now. Getting older stinks…lol Are your heart issues lupus related? I’m curious because my doc flipped out when I was having excrutiating chest/upper left back pain and didn’t go to the ER. I was busy so I blew it off until the next day. Not the smartest move I know. Hope you’re feeling well today.
Cameron said:
There's a WDW in Hawaii isn't there? Yeah, it's the sun. I used to hike and be in the sun all the time when I lived in California, but it I only got small flares and not enough off the list of symptoms to justify a Lupus dx.
Listening to you all, I can relate. I used to be the original 'beach bunny', as my Dad used to say.....and I wouldn't feel good, but that was all. I got the DX of Lupus after receiving an live vaccination of the flu shot in the fall of1988. Within a few weeks it was all I could do to get home from work. I was so sick I had to take a leave of absence from work. I went from dr to dr, for months. All they could tell me was I had some sort of virus, the flu. After months of being told they didn't know what was wrong, I cried....it was all in my head, and stress!!!!! right I said 'who has the flu for 9 months.
I finally went to a dr. and with my malar rash, and hi ANA, crp, etc. I finally had an answer. He sent me to a Rheumy, as you all say. He put me on high doses of Prednisone, and what a difference. To make a LONG story short, I went on all the different meds that you talk about in this forum, some helped and some didn't. You have to find the right dr. for you...keep trying. Don't take no for an answer.
When my husband retired, and we moved back home, I decided to get all new drs. I felt like the one's I was seeing we too complacent. Boy did I make the right decision. I'm on the drug Benlysta, and so far so good. My dr. said the blood work looks better, and signed me up for 6 more treatments. It's expensive, and very fortunately I'm on medicare, and a secondary ins. that pays for it. I don't know for how long, but even if it's relief for only a few months I am thankful.
It's very hard to know when we're in flares sometimes, because we always feel this bad....I was DX with fibro 5 yrs after the DX with the Lupus. So I'm always feeling like crap, but do have some days that aren't as bad, and feel blessed to have 'some' days that I can feel 'functional'.
I too have family problems with being taken seriously, and feel like that my husband is home all the time (huh) he thinks I'm lazy, but on the other hand, because he has his own health issues (COPD, PTSD, effects of agent orange, asthma, etc) he seems okay. HOWEVER, he does not help me. I 'used' to push myself until I could hardly stand, but when he's just sitting around watching TV,
Okay, that's about me....ranting, and hopefully giving a little insight, on another persons experience with Lupus.
And I also am learning a lot from this forum, thank you.
They believe the heqry issues are f r om the APS since that has a tendency to affect the valves. Now the Lupus is affecting my heart and I’m in CHF with Lupus Pericarditis and a Pericardial effusion. You’re doc was worried about a Pulmonary Embolism and hes every right to be upset with you, you could have died. I know how you feel though, I hate running to the ER with every little issue.
Annemarie said:
I was born n raised in CA and now live in the foothills about 45 minutes from Tahoe. I never really had a problem with the sun until I got older. I grew up horse back riding, swimming, running around out in the sun all day long and never really had a problem. I did get minor vasculitis flare ups on my legs but it didn’t knock me flat like it does now. Getting older stinks…lol Are your heart issues lupus related? I’m curious because my doc flipped out when I was having excrutiating chest/upper left back pain and didn’t go to the ER. I was busy so I blew it off until the next day. Not the smartest move I know. Hope you’re feeling well today.
Cameron said:There’s a WDW in Hawaii isn’t there? Yeah, it’s the sun. I used to hike and be in the sun all the time when I lived in California, but it I only got small flares and not enough off the list of symptoms to justify a Lupus dx.
Well darn. Hawaii is off the list too. If someone says Paris that’s it! I’m bummed. Lol. It’s very interesting to hear everyone talk about lingering flares and sun causing problems. I felt the best living in North Carolina mountains. Pretty much air conditioned year round except maybe three months. Moving to Charleston Sc and living in Florida is like slowly dying from the heat. And that’s without ever going out in it.
you can try a lot of drugs that your doctor clearly has not. I do not know what kind of doctor but you should been pushing for other options years ago.
Just antiinflammatory drugs like ibuprofen can help greatly with both pain and fatigue feelings. The trick is finding the one that works best for you so might need to try some for few months at least...if no changes go on to other.
There are the biologics now you can use as well or methotrexate and other chemo drugs which help with the lupus symptoms of fatigue, low grade fevers etc.
For me, when i can tell i am in SLE flare is i get low grade fevers and yes they can last many months especially if you are not getting right treatment. I do NOT use steroids as i want to live as long and healthy as possible. I have only when in ICU cases..life/death or short , two week periods and only once a year. That is my personal belief after watching people die from over use, that i loved very much. You can do the research and choose for yourself. I do get the shots in direct joints that have severe RA and pain but the doctors have their rules about only every 6 months and i must give it break for year at least after so many shots. Otherwise, you can steriod will start to damage the joint as well as your own body.
But go to lupus and fibro support groups in your area, lupus foundation of America has groups and also basic place to get information on treatment.
But seriously....crazy you are not getting better treatment. Lastly, get out of bed!! Stats show over and over that those who get out of bed and move around do much better, have less pain than those that just stay in bed. I am not saying to go out and work out immediately but a just start walking around a bit more...lay on sofa or sit in chair...get up and move every hour just for few minutes even at first. Since you not been moving much, i ask to see PT from your doctor who can help you start moving safely and without much pain.
The epsom salt baths at end of day of moving will help greatly for fibro pain...really it does as do TEN"s and heating pads. Just being among your family or out of bed will help your self esteem too. You might consider seeing counselor who understands about chronic illness.
I totally understand that not sleeping and being in pain you want to give up but don't!! there is so much out there that you can do in just few months of moving more you will be so proud of yourself and a lot happier...but also need better health care by your doctors. GOOD LUck and let us know how you are improving.
what is the WDW...admit i am running fever so not thinking best...but not sure what it is?
As to going out hiking and riding horses, Anamarie..you must live off near auburn or Placerville? I have hiked all the Sierras around Tahoe and moved up here to Mt Shasta with my husband to do the PCT north of Tahoe since we did it all in small either day hikes or back pack trips including some ride in trips the rest of the trail south of Tahoe..well slightly above Tahoe. Funny thing, i thought moving up here would heal me as Mt Shasta, according to many has healing powers, well i love the mountains but not tons of snow like tahoe gets plus like i said we wanted to finish hiking the PCT trail( it is trail that goes from Mexico/cal border up to Canada through the Sierras).
I got sick and had more surgeries my first 4 years then in all my life. Worse part i left my wonderful team of doctors since they do not have Kaiser up here and had to figure out blue cross kind of insurance...rotten doctors ...they all moved here to hike and ski instead of be a doctor lol! like us!!
My husband got sick too and his ankles are destroyed so hiking long hikes...for us ten miles was nothing now no way could he do ten miles with his ankles....BUT we still go out and walk dog...just lost my 2 dogs...but will eventually get another. I walked them daily..we still have mastiff but he hurts as well so every other day for him at most.
As to the sun...i wear at least 3inch brim hats more like 4 plus have sun protection clothing and wear sunscreen daily...even in winter. Sierra traders has it at reduce prices...i might have to buy mens since they have more options but i could care less
Cameron said:
They believe the heqry issues are f r om the APS since that has a tendency to affect the valves. Now the Lupus is affecting my heart and I'm in CHF with Lupus Pericarditis and a Pericardial effusion. You're doc was worried about a Pulmonary Embolism and hes every right to be upset with you, you could have died. I know how you feel though, I hate running to the ER with every little issue.But your doctor is right about pain and not going to ER with your condition. I had some fluid issues but been okay for few years now...but my mom had normal by pass in her 70's...before she said that she got winded faster even going up stairs, plus some pain in heart area but not anything bad...she went for reg check up and mentioned this..they never let her out of hospital till she had bypass after failing stress test. IT gave her new heart and now in her mid 80's is her heart starting to slow down a bit but she still gardens daily and goes for her walks. So listen and get a excellent heart doctor who will work with your rheum.I can tell you some most wonderful hikes that very few people know about as i grew up hiking in those areas...i got poison oak horrible and my father loved the mountains so only place i could hike far was mtns as kid. And we did all over...no one was in those days or back packing even so they take photos of us. We bring midget mule with us when family would go on week long trips into desolation or other wilderness areas and looks we get from people...was so amusing. Some say we smelled bad ...lol after hiking 7 miles in dust and heat..even as kid you stink lol!! But they always took photos thought we were gold miners lol!.Later in my 30's i could hike in foot hills and since missed so many places i went all over, with husband and friends...this was with my lupus and Ra. Yes i got sick more than few times but it was always worth it. Thankfully all my doctors agreed. As they said better i be out enjoying myself even if i got sick then home in bed bored or not having much fun.So i hope all of you who love to get outdoor stress to your doctors how important it is...there are prescription sun screens and other things they can do to help that you might not be aware about. I think it is best to try and find doctors who also love outdoors as they will get it and help you more. Do not just see rheum...but if you have feet issues get a decent podiatrist, dermo and maybe orthopedic who also helped me greatly was my internist who happen to be my GP. She just was by far the most all around smartest and often came up with solutions to their specialities. But all hiked...some fly fished one wife was endurance rider and he hiked as much as we did..so we compare trails etc.I am still trying to find a doctors like them....i have okay ones but just is not the same..often it is i who has done the research and makes suggestion if blah drug will help. I like it where they may not go home and work on my case but just have some working knowledge as i know many others who also want to be active. So please do not give up....just get treatment you need and go on from there..but getting older does make it worse..i totally agree but as my first rheum said to me when my friends start complaining about getting old and they are now...he said well just laugh and say welcome to the club of my life!!Good luck to all of you who want to get out ...hope all of us can do it and keep doing it. I know since losing both dogs in two week period...my grief really has taken toll plus just not walking daily...in two months since they died i can tell already i am not in same shape. I sure miss them so much..they really kept me going..if you cannot do it for yourself get a dog who active a bit and they'll get you out! Their love and joy will make you so happy!! i am toying with getting a midge mule so my husband can go far ...can ride it when he hurts too much or some small trail horse. any ideas on this ?? good luck really to all of you
Annemarie said:I was born n raised in CA and now live in the foothills about 45 minutes from Tahoe. I never really had a problem with the sun until I got older. I grew up horse back riding, swimming, running around out in the sun all day long and never really had a problem. I did get minor vasculitis flare ups on my legs but it didn't knock me flat like it does now. Getting older stinks...lol Are your heart issues lupus related? I'm curious because my doc flipped out when I was having excrutiating chest/upper left back pain and didn't go to the ER. I was busy so I blew it off until the next day. Not the smartest move I know. Hope you're feeling well today.
Cameron said:There's a WDW in Hawaii isn't there? Yeah, it's the sun. I used to hike and be in the sun all the time when I lived in California, but it I only got small flares and not enough off the list of symptoms to justify a Lupus dx.
Siskiyousis, WDW=Walt Disney World 