I am going through all the symptoms. Dr.s refuse to give me Meds because I am either allergic or I will get a pulmonary infection. I am oxygen for atectosis. A type of COPD. I really need a muscle relaxant, but they refuse due to lungs. Does anyone else have problems with their lungs. Mine are collapsed. My neck is so stiff in the morning that I can not lift my head of the bed. I also have the back pain I had a compressed fracture in my lumbar spine. This is from Osteoperosis. Mr mom just found out that she has scoliosis. She is almost 93. They just diagnosed it. I’m leaning to stenosis. I just can not handle any more tests. I told my physician that I’m done. The more tests, the debilitated I get. I any one else exhausted form the lupus and the testing for this and that?
Yes! and the attitudes of those around.
Hi Patricia,I will be 52 next month and have been on oxygen for 14 yrs,I only sleep with it at night now,I use in hailers in the day time…The lupus starting going after my heart and lungs back in high school,I was a big cross country runner when I had my first heart and breathing issues…my hands started bugging me at the same time.I dropped things,my hands ached like a deep tooth ache,and of course back then they couldn’t tell what my problem was,I had a huge family history of RA and a family member with MS…I was in a bad accident when I was 7yrs old that caused severe bruising to the left side of my brain,I spent yrs taking Dilantin,so they were assuming that it was side effects from the drug…I finally lost the use of my left hand and wrist last yr and had surgery.I spent 6 months in a cast,I’m now pain free in that hand with very limited mobility. I am now wearing a brace on my left wrist and it hurts so bad it feels broken,I have an appt with the hand surgeon on the 30th of this month…l wake up every day with a tiredness I can’t explain to anyone,I’m sick of Drs appts and every time I turn there’s something wrong with my body,I would spend everyday at the doctor if I went every time something was wrong,I always struggle through the winter months,I’m always in a bad flare in the winter,I stopped telling my family things! They just don’t want to hear it!! My 28 yr old daughter said ,Quote; I do not want to hear about it!!! " Everyone knows your sick!!! That was two yrs ago,now if she says," what’s wrong mom"? I say, " I’m fine"… Nothing’s wrong…even if she prys I still insist I’m fine…I feel alone with my lupus, I have a good cry in the shower in the morning and go on with my day like nothing is wrong…I’m to tired to care anymore about what goes on with my body,I try to ride it out for along time now before I go to the doctor…your mind can be a terrible thing sometimes,so I always try to talk myself out of not feeling well…Does it work?. I don’t know if it does or not…sometimes denial is a beautiful thing…I don’t have answers for any of the weird things lupus does,I just try to make the best of it…I definitely try to keep it to myself as much as I can…I just can’t let it define who I am…i hope things get better for you and you get well soon…where ever you are I hope the weather is beautiful…celeste
Hi All -
Years ago I realized that if doctors took a month off for vacations, I had the same right. But I took it further. I'd say,
"The patient is presently AWAY from the office and cannot be contacted in
the next six months ,unless there is an emergency. Don't call us; we'll call you."
I hate going to the doctors simply because having to go through the same litany of problems and repeating them all to deaf ears is basically EXHAUSTING and burns up too many neurotransmitters at this point. And there are times when it is simply BEST for me to just tell myself it is better to stay away for a good long while so my spirit can heal. What is, IS. And I don't need their permission or understanding. My body does what my body does.
That's not to say I'm not going to dial 911 if there is a crisis, but with these diseases, even going to the ER is a nightmare, as everyone has to question everyone else's diagnoses for the last sixty years and I'm too WELL to try to speak or defend any of them. It's not my job. And in order to cover their butts, they have to do so many different tests to let you go home from the ER that are usually fruitless, frankly. Or they imply that you are somaticizing symptoms and crazy. And this is not the kind of treatment that any of us need.
So I'm not saying "Be in denial." Just that we're the only ones that know what works for us.
For me, it is just best for me to accept my reality and avoid conversations with idiots even if they are wearing white coats with the letters MD on them. I just truly believe at this point that doctors are not going to really help me in any way until there is a crisis of such huge proportion that they are forced to intervene. Otherwise it is just repeatedly doing the same tests which just are exhausting as they take up the few hours of the day that I could be functional and enjoy myself, instead of the toxic fatigue when I finally am able to get home. And frankly, ten doctors can look at the same test and read it ten different ways, as it seems that no one really gets this disease.
So I use the old Zen proverb. For those who understand, no explanation is necessary.
For those who do NOT understand, NO explanation is possible.
And when feeling really desperate, I plug into this site. This is the only place where I can just be ME. WE all understand that this is a systemic disease, the nature of our flares, and the location of all our internal organs as we know where everything is located because we've felt the dysfunction from the inside out, far better than any anatomy text, frankly..
If you mention anything to a doctor at a regular checkup of what's been going on in the past few months, there are just too many things to include. It's a systemic disease with multi organ involvement for me. And if you mention any organ, they want to test it immediately and stop listening to anything else you say. But try to explain that it is futile to do X scan or test at this point, because it probably won't be happening until a month or six weeks from now for a period of X weeks, as I'm used to the flow of my flares, and THAT is when you should be tested? Well, the docs don't work that way. Things have to be scheduled when the doc they send you to is free. And from experience, I know that isn't gonna result in anything worth writing home about. They think you are a non compliant patient. But we are just being realistic. Why waste the money and time? So I have learned to basically tell them, "The Patient is NOT in. Don't call us, we'll call you."
When doctors see us and think we don't look sick or in crisis, we have to learn to protect ourselves by thinking they don't look stupid or in a catatonic state either.
So I think it is the HEALTHY thing to PROTECT ourselves, frankly. And never to forget that there are even some lupus patients that don't understand things we talk about because they haven't dealt with the same "disease state" that we are affected by. We're all as unique as snow flakes. No two alike.
At this point in my life, at 62, I don't think this is a remitting/relapsing disease any more, for me. My flares are like continual waves I have to ride and I don't have periods of remission any more that I am aware of. But that doesn't mean it is always going to be like this. Who knows? In my seventies, maybe I'll have a decade of remission? Every decade is different for me. So I just have to keep my head above where my feet are and go with the flow. Ride the wave that is beneath me. And keep an open mind that just because things are how they are right now, doesn't mean that they will always be that way.
So maybe I'm not a realist. But I have to believe that things can change for the BETTER with this disease. If not, thoughts of the future would make living in today impossible. I don't want to think that every time I cough I'll break vertebrae. I'd rather cancel that thought entirely, because there is nothing I can do about it.
Don't know if any of this is helpful. Just shooting out a lot of buckshot. Take whatever sentence might be helpful in your own circumstance, and then please just disregard the rest of my babblings. None of us knows what it is really like to live in your shoes. We are all so unique with so many variables, too many to count.
Hugs and just keep trucking,
Kitty
No I have not had exactly what you are going through and it sounds awful. Lupus is a very stressful disease and you have to take things one day at a time. Try not to think ahead too much because it can be so overwhelming.
Yes i hate having a lot of tests...in fact i am searching for new doctor and part of my deal is that they do not run a lot of unnecessary tests on me...by now i know if doctor is trying to rediagnosis me or not..after 30 plus years i am positive of what i have plus over 3 rheum have agreed on diagnosis...so not needed for another.
I also think your doctor should listen to you and at this point only due tests that are necessary for good reason. Such as it will help them know what medications you need to help you.
As to your neck...you might try a massage...where all they work on is relaxing muscles that are tight in your neck and surrounding area. This usually works plus heating pad as well as epsom salt baths.
I will not take muscle relaxants as they have really negative effect on me...do not agree with me at all. I get too sleepy plus so mixed up mentally just makes me sicker.
So i try other things..voltaren gel also helps as your vicks rub might but the other is prescription and works deeper and longer. TENS unit also might..i bet it would help if you could get the tabs on correct place. That is where a specialist who uses them regularly can be huge help like PT. PT also can help and i also say chiropractor ...i do not use them often but for that kind of pain i have had great results with them. Plus often they have massue in their office and they will give you one as part of the treatment so well worth the money if you do not have them covered in your insurance..most do now.
If it constant thing...go to PT and try to find sports one. I have had best treatment with sports Physical Therapist and ones that are trained in many different ways..reiki for example. I once had neck shoulder problem that went on for years. I tried 3 PT's and finally a friend at work said go to this sports PT guy...who works on professional basketball team locally ..this guy fixed it plus showed me how to keep it fixed. It was coming from down in my pelvic area!! never have guess that in million years though i knew i had shorter leg and hips were tight...plus injuries in my back.
My brother who had some autoimmune disease ..he died in mid 1980's had it in his lungs very bad. It was like disease was attacking his lungs...i cannot say how many lung biopsies he had plus surgeries to get fluid out...we both were sick in similar ways other than lungs...both have had kidney involvement..but compared to him i am or was mild case. He was in and out of icu for a lot of teenage and adult years...he died at 34 so not very old.
Since lupus can go anywhere ...but they never thought his was lupus he was tested for things such as Valley Fever and one main doctor thought it was sarcoidosis but i once came across another autoimmune disease that really hit all the major things he had wrong with him. Of course back then even when i was diagnosed with SLE many doctors looked at it as some do fibro now...not a real disease. I was lucky that my biopsies showed what i had where my brother it still was not clear and even later it was found i have many autoimmune diseases which i think odds are is what he had as well.
Sad part is i asked his primary doctor to treat him with a drug that has been used now often to treat extremely sick autoimmune patients...back then it was just being tried but with good results. He rejected the idea and for years i think he felt guilty whenever he saw me( he was my parent's doctor after my brother passed) he had hard time meeting my eyes.
Sorry got side tracked...hope you have pulmonologist working with your rheum...that is hardest part is finding one good doctor who has friends in all the areas of expertise one's might need with SLE.
Winter months are much harder on me...but luckily we have not had hardly any snow and it has been warmer the last two winters...so it has helped a great deal. I dread winter coming due to severe cold. I do not see how those who live back east stand it ...seriously!! though i hear that the cold and kind of snow you have is very different, dryer and lighter not so wet and heavy as here. but cold is what really gets me...just causes pain everywhere and it has only become worse as i age.
Best is to just try and get ones mind off it and keep warm...is all i have really found in the long run. Keep moving though it hurts a great deal in beginning and after so long or afterwards once you stiffen up but it does help i know in the long
run.
I am sad for those who's family do not want to hear about it though i get it...i get sick of myself i keep saying oh i hurt. Luckily my husband now also has autoimmune disease which causes pain so he also is saying how he hurts..in fact he just gives up much more than i do...which does make it hard on me. It helped when he was okay and wanted to go out for hike and i push myself because i know i enjoy the beauty...now it is me pushing him most of the time but he does push me on some days.
If you can just tell family exactly what they can do that helps...it is specific and gives them something clear to do. IF they feel you are complaining too much...let them feel free to say, okay we got it...in other words they know you are having bad day.It really helps if they seen you at your worse...well has my family and friends. My one sister never has seen me bad sick because she did not live near me....so she tends to not take my illness as well but now she has RA so it has helped to have her realize about pain and how it sucks your energy.
But family support and not having it is so hard especially if you live close...i do not live so close by anymore and i greatly miss them. Part is them moving a bit further away and we did when my husband transferred. I do not feel as connected and they do not see me sick anymore. Since if feel sick i won't drive down to them. but i feel and i hope you go to either group or counseling to get ideas how to help your family understand how you are doing...same with friends and work.
i also encourage not just crying but journaling to let out your sad feelings...grief of not having the understanding and grief of watching your body slowly go downhill. Try to not act like you are okay...i have go so sick when i do that ...try to take rest during days and be gentle on yourself.