Hope you are all well. I haven't been on here in a couple weeks. I am currently beginning week 7 of bed rest. I can't walk down the hall without my oxygen level dropping to about 83 and my heart rate spiking to over 109. They now have me on oxygen for when I do anything or have to go anywhere. I'm seeing 4 different specialists trying to figure out what is causing this. I'm still on 10mg of prednisone so luckily I no longer have the SLE flare symptoms on top of this. I do have severe chest pain and it goes through to my back. So far lung function shows normal & preliminary heart tests were all normal. Right now I'm waiting on the results from the 24 hour heart monitor and the Heart MRI. I have a lung scan this Friday.
I'm so exhausted just taking a shower or eating or having a conversation with someone all I do is nap or lay in bed. I feel like I have lost any quality of life. I'm a mess. I would rather stay home than to have people stare at me while I lug around my oxygen tank so I don't pass out. It took me 3 days to have enough energy to make a quick trip to the grocery store for food. I know I'm whining, but I have reached some really dark places in the last few weeks and really wondered if it is worth living like this. I'm only 41 years old. I really wish someone would find out what is wrong with me and fix it. I'm beyond caring that I feel like a lab rat with all the tests and blood draws I've been through in the last couple weeks.
I've lost the person who was supposed to be my best friend while I have been sick because it was too much for her to deal with. I'm actually glad I found out she was not a true friend so I could cut those ties now. I really need support right now. My family has been great, but they are all out of state. I have other friends close by who text or message me to check on me. My boyfriend is still working out of town a lot, but he checks on me daily. Sometimes I think I can't say how much I just want to give up to them because they don't quite understand.
I'm so sorry you're having to deal with all of this. Do you have any little activities you can do in bed? I've been reading some easy little summer books and it's just a nice mental escape for me. I will be praying that the doctors figure this out soon. Keep us posted on what they find out and how you're doing. Hang in there. We're all here for you. ::Hugs::
I am so sorry you have to go through all of this. About an hour ago I had a horrible panic attack which I hate them but after reading your post I realized how lucky I am. I have a lots of health issues but I see that other people like you are in a worse situation when it comes about health issues. I hope and pray you will get better. I don't post often because even when I am behind a computer I am very shy so sometimes I don't even know what to say, but if you need anyone to talk email me. Please take care. Hugs Sonia
I'm so sorry you're having to deal with all of this. Do you have any little activities you can do in bed? I've been reading some easy little summer books and it's just a nice mental escape for me. I will be praying that the doctors figure this out soon. Keep us posted on what they find out and how you're doing. Hang in there. We're all here for you. ::Hugs::
Thanks Morgan! That's funny you said that about respiratory problems being on the rise, the tech who did my lung function test also told me that they have had a huge increase in younger patients with respiratory issues this year. I would chalk it up to my allergies being bad, but I haven't had any allergy issues while on the prednisone. Maybe it is some sort of virus going around.
I know there are others worse off than me. I'm such an independent person I really hate asking for help and I feel as if I am whining if I complain at all. Thanks for the support. I've been doing well, but I've broken down a couple times in the last couple weeks when everything got a little overwhelming. This website has been great. The hugs we're greatly appreciated from everyone!
Morgan said:
Huge hugs Dobby. What you are going through is exhausting on every level. Sharing how you feel isn't whining, it is acting healthy in reaching out for support! Do the best you can. If tests reveal something, you can deal with it step by step. If they don't? You have the same mystery thing as the rest of us. And when challenges hit hard, it does weed out who is really positive and involved in your life or not, so a blessing in disguise.
Your body is saying rest, so let anything nonessential go. This is a rough patch. ride it out, better times to come.
Since I went downhill in a hurry several weeks ago, I have heard of a whole lot of people struggling in this way symptom wise - with lupus or not. have to wonder if there is a virus floating around? daughter works in hospital, and is working herself to pieces like all the rest there. they are swamped, especially with respiratory patients.
hope you can find something, even small, each day to do that brings you joy.
You are not alone, and though online not same as face to face, always someone here.
Hi Dobby I'm so sorry you're going through all this. You're not whining, we are all here for you.
Please keep us updated on the results of your test, and hang in there.
Hugs, Trisha
I am so glad you shared this...and got it out. thats why I "liked". not becuase i like what your going thru. we all on here can seriously relate to dark days ---and more dark days than sunny.
i personally never have had an issue that went as far as an oxygen tank so i cant say i understand.
but i understand your frustration. i understand the feeling that your too DARN YOUNG for this!!!!!
i understand you want YOUR LIFE BACK!! I understand YOUR WILLING to do the work to get better, but please just tell me what the HELL IS WRONG first!
i feel ur words. and i really hope change comes soon. if it does not. Please dont be like me and allow the big dark worm hole to suck u in. they have medicines that can actaully work to asssit in this process of depression. which is natural considering what your going thru.
My therapyst said-- any person with constant pain0 on going - for years- or a long time.. over and over... is more likely to have depression and not even realize it. or not treat it. So i just say... when u feel like that big dark worm hole is more appeaking than life..... please get more help to get u through these days.
I wish you the best on your test results. and i also wish your lungs strength...and your body wholeness. those are my prayers for you.
Thank you Cynthia! It is looking like this could be from a blood clot in my lungs. I'm getting worse by the day, today the oxygen didn't even help with my shortness of breath. I'm calling my doctors in the morning and pushing until they do something. I'm not sure I can last until my lung scan on Friday. The chest pain today has been horrible. After this seeming worse today, I'm afraid to fall asleep, because I may not wake up. The flip side is I'm even worse without getting any rest because of the SLE.
Does anyone else have the problem of things not showing up on catscans or ultrasounds? I came close to dying in 2003 when I had a tubal pregnancy that the doctors couldn't find on 4 different ultrasounds. I finally yelled loud enough to get a resident doctor to admit me for emergency surgery and my tube was starting to rupture when they finally did the surgery that night. Everyone kept telling me I had a miscarriage, but I was white as a ghost and doubled over in pain, I knew something was seriously wrong. Same thing now, I know something is seriously wrong and all my symptoms point to a blood clot in my lungs, but so far nothing has shown on a scan although the D Dimer was positive a month ago when I went to the ER. I can't explain why this happens, just wondered if anyone else has experienced this.
wow. its obvious something is wrong.... and you may have to go to a different ER. and tell them nothing, let them figure it out. but just tell them you cant breathe.
i really hope this is resolved soon,
Dobby said:
Thank you Cynthia! It is looking like this could be from a blood clot in my lungs. I'm getting worse by the day, today the oxygen didn't even help with my shortness of breath. I'm calling my doctors in the morning and pushing until they do something. I'm not sure I can last until my lung scan on Friday. The chest pain today has been horrible. After this seeming worse today, I'm afraid to fall asleep, because I may not wake up. The flip side is I'm even worse without getting any rest because of the SLE.
Does anyone else have the problem of things not showing up on catscans or ultrasounds? I came close to dying in 2003 when I had a tubal pregnancy that the doctors couldn't find on 4 different ultrasounds. I finally yelled loud enough to get a resident doctor to admit me for emergency surgery and my tube was starting to rupture when they finally did the surgery that night. Everyone kept telling me I had a miscarriage, but I was white as a ghost and doubled over in pain, I knew something was seriously wrong. Same thing now, I know something is seriously wrong and all my symptoms point to a blood clot in my lungs, but so far nothing has shown on a scan although the D Dimer was positive a month ago when I went to the ER. I can't explain why this happens, just wondered if anyone else has experienced this.
Thank you again everyone for your support!! I finally couldn't take the chest pain anymore & didn't sleep at all last night, so I went to ER this morning. Spent about 7 hours there, but when she was ready to throw up her hands and blame a lupus flare again, I pushed back wanting to know results of cardiac MRI & 24 hr monitor. I FINALLY have a diagnosis....pericarditis. Not good news that lupus is now attacking my organs, but I'm happy they can stop looking at me like I'm being measured for a straight jacket!
More meds added...I refused to go back on 60mg of prednisone because of the horrible side effects I have and demanded medrol instead. :o) Small victories. Yes , I am still in control. I will follow up with my cardio doc & rheumy next week to see if this is working and find out how severe this looks on MRI.
how are you doing>>>>???? just checking up...... pluericy. has anyone mentioned this.
its extremely painful....... a load of ibuprofen 800;s and pain pills will reduce the w=swekking around lungs..less pain... so u can actually rest
Dobby said:
Thank you again everyone for your support!! I finally couldn't take the chest pain anymore & didn't sleep at all last night, so I went to ER this morning. Spent about 7 hours there, but when she was ready to throw up her hands and blame a lupus flare again, I pushed back wanting to know results of cardiac MRI & 24 hr monitor. I FINALLY have a diagnosis....pericarditis. Not good news that lupus is now attacking my organs, but I'm happy they can stop looking at me like I'm being measured for a straight jacket!
More meds added...I refused to go back on 60mg of prednisone because of the horrible side effects I have and demanded medrol instead. :o) Small victories. Yes , I am still in control. I will follow up with my cardio doc & rheumy next week to see if this is working and find out how severe this looks on MRI.
Hi Thanks for checking on me. I've had a rough week. Monday I had a follow up with my rheumy after ER visit only to find out ER Dr never called him back and pericarditis is mild and would not explain oxygen levels dropping. Been to different Dr everyday this week and had a cardiac cath yesterday that ended up being perfectly normal just like every other lung & heart test they have done. I've now officially stumped all of my specialists and they're talking about sending me to the Mayo Clinic for a second opinion. I'm hoping there is some simple explanation for my drop in oxygen that will be an fix. But since they wouldn't contact my cardio Dr yesterday after my procedure as he had asked, I did not get to speak with him to find out what we're doing now. I will have to try to contact him today. Since no one has given me any instructions on the continuation of steroids or refills for the Rx. I'm out of medrol and just taking much lower doses of what prednisone I have left just so I don't go from 24mg medrol to no steroids at all. UGH. The cycle continues. I'm so relieved and blessed to have ruled out all major heart/lung problems I can't even tell you!
exactly...i am happy to know your heart and and lungs are ok.
but the mild inflammation they see around your lungs is SUPER PAINFUL and on a scale of 1=10....its a 9.5 and depending on how long you been suffering with this pluericy issue...inflaamtion without the fluid(pneumonia type) your still inflame in your lungs.....
my heart doc said I was perfect..my lung doc said I was perfect...
and YES ia m grateful
but when I cant speak and barely breath. and ant move...cat get up or lay down ..each move feels like death......this is what ido.
go to the rheumy -- have them prescribe pain meds....and 800 ibupifens. take them every 6 hours....for about a week and u should notice a huge help. if it is indeed inflammation in the cavaties of the chest it is hard to see except through ultrasound.....not xray. xray shows more fluid and stuff then just inflammation. MRI and cAT scans show inflammation though.
I hope any of this helps.
and when your low on meds...u call the pharmacy for the refill, your doc WILL renew and give u what u need.tell them ur in pain.....and u need the pain level dropped now because u are going o collapse if not.
be strong. don't be afraid. don't fel like they have all control
nO
u have control also, and can tell them what u need.
best wishes again.... and I am worked up with anger due to their lack of care for you.
maybe go to regular doc.....not specialist....... they may actually take care of you better. have all lab workds and records sent to your primary doc and get in there ASAP.
that is my suggestion,
let them see your air sat levels.
they take a different apprcah then specialist. specialist only handle their portion.
Dobby said:
Hi Thanks for checking on me. I've had a rough week. Monday I had a follow up with my rheumy after ER visit only to find out ER Dr never called him back and pericarditis is mild and would not explain oxygen levels dropping. Been to different Dr everyday this week and had a cardiac cath yesterday that ended up being perfectly normal just like every other lung & heart test they have done. I've now officially stumped all of my specialists and they're talking about sending me to the Mayo Clinic for a second opinion. I'm hoping there is some simple explanation for my drop in oxygen that will be an fix. But since they wouldn't contact my cardio Dr yesterday after my procedure as he had asked, I did not get to speak with him to find out what we're doing now. I will have to try to contact him today. Since no one has given me any instructions on the continuation of steroids or refills for the Rx. I'm out of medrol and just taking much lower doses of what prednisone I have left just so I don't go from 24mg medrol to no steroids at all. UGH. The cycle continues. I'm so relieved and blessed to have ruled out all major heart/lung problems I can't even tell you!