Sorry i haven't been on in a while all my computers have been a little out of wack
i just kinda been letting everything build up and i just can't take much more
i'm so sick of waking up and feeling like everything is weighed down and kinda numbish and not sleeping through the night so i'm up and down the whole time so i'm exhaughsted so i sleep off and on all day and i wake up in the middle of the night with horrible pains in my left arm im hoping its a pinched nerve but im pretty sure its not a heart attack or something because it comes and goes and is usually in the middle of the night. then there's the "electric shocks" that i feel go through my heart when im doing nothing at all i could be walking to another room in my apt sitting watching tv or standing and leaning on a counter and it'll happen, hurt like hell for a min then go away. then there are other times during the day again not doing anything strenous and i'll feel like i just got up from holding my breath so long under water that i feel like my heart is jumping outta my chest and its hard to breath. i feel worthless and i dont get why i keep letting myself keep pushing forward i wanna give up and say screw it all i feel like i can't do anything and what i try to do i struggle with i just i HATE feeling like this. I wish i could make it all go away and sleep and feel better and function. its just so grrrrrr....... is there a way to make it all go away? will i ever feel "normal" again? is it really just going to keep getting worse? why do drs have to keep doing the bare minimum and none of its getting me anywhere! i wish i was better..... i wish it didn't exist..... i wish i had energy.... i wish i could sleep..... i wish i didn't hurt.....
how do i even talk to my dr and explain to him whats going on and that he needs to be a little more active in taking care of me instead of so passive.
just make it better....make it all stop :( i can't do this much longer
I love Ann's response - . I'm still new at this, but I believe I would feel the same way and "vote with my feet" Honey, you feel free to vent - and we will listen.
Sweetie this disease is so frustrating when we are continuously in active flares! Grrrr... is the exact right response! Even with 'treatments' we have to hope that the active disease calms down on its own so they will work. There are some of us that are lucky enough to have that happen long term. Others of us, we get a little relief and then we adapt to some of our symptoms. I was lucky enough to get a little "remission" for a couple of years once.
It is important though to have trust in your doctors. Perhaps think about these doctors who have stated that you have Lupus yet sent you on to other doctors for differential diagnosis. I would think that out of those folks, one or two may stand out as being above par, good bedside manner? Go back to those doctors, tell them what your experiences have been with these "new" docs - ask these first doctors to please see if there is anything else they can do. These doctors obviously saw something wrong, something seriously wrong. They probably have no idea what they new guys have been doing. I've gone back to step one before and that step one doctor was appalled at what the doc he referred me to had to say. Step one doc got me to the right person after that and he also monitored more closely what was going on. Just because someone is a doctor doesn't mean they know everything or that they are always on the ball every day.
Unfortunately, we don't feel well every day and it is hard to play chase the medical tests, medical records and diagnosis. If you can, do it when you have a bit of energy and keep lists of the steps you've accomplished, we have to be our own advocates to get on the correct treatments.
A huge part of my life has been spent in active flares with this disease and with other auto-immune diseases on top of Lupus, with organ involvement. I've had docs fight for me, but honestly - most of the fighting, gathering, reminding, scheduling, and running is done by ME. Not fair! GRRRRRR..... is the correct statement!
You hang in there - please keep venting, don't let it build up! You have a right to call any of these folks and get to the bottom of it.
I truly hear your heart. All the things you've mention seem to work on each other (lack of sleep, pain, exhaustion,feeling worthless, not being productive, unable to have fun and enjoy everyday life, feeling alone.....) and it seems to form a giant volcano and feeling it might erupt at any time. Just so you know...YOU ARE NOT ALONE!
Many issues you face ....others on this sight...are facing...even as you are reading this. We care ....and though I do not have a magic wand to wave over your head to make it all better. We have access to a loving God who wants to hear you and answer your prayers. Pour your heart out to Him and ask for directions and help. "He is an ever present help in time of need." The help may come through counsel and advice from this site. You may gain an inner strength that allows you to keep going! I face that often. It gets to be too much, but in the stillness of my night, I sense God's closeness and He gives me strength to keep going.
I love to put on inspirational music that gives me fresh hope and strength. I walk outside on the porch and sit and enjoy God's handiwork...talk to my pets, watch the hummingbirds, and change my surroundings if only for a half hour. Also I drink a couple of glasses of ice water...always makes me feel better. I'll call a friend to find out how she is (to get my mind off myself)... It isn't easy to be hurting and wonder if doctors really understand what we are going through. I so hear your heart and pain...
I will pray that you get some relief immediately, that you will be led to go to the right doctor to get the help you need. And in some way you will have support... close to you.
Though we don't know each other, we share in a close bond of suffering some of the same issues. Please talk to us and let us encourage you. A great big hug for you, Faye
just hearing and knowing that someone understands and has been here before, maybe not in the exact same circumstances, but still understands some of the feelings and frusterations and just wanting to give up makes me feel a little better. To know i'm not nuts and it's not just me and some of the problems are cuz the drs aren't living up to the expectations theyve been given through life.
i used to read to escape it all but lately ive been so busy working and trying to get enough sleep to feel even a bit rested and going from dr to dentist to work to babysitting to this that and the other that when i'm home im so exhaughsted that all i do is sleep most of the time i'm even home. if i'm awake when i'm home its usually for maybe 2 hrs and i eat and try to get a few things taken care of go to take a break and end up falling right back to sleep not long after i sit down. the only times when im up for long periods of time are when i have things going on. like today is a long period of awake day: i have to do laundry, work a 4 hr shift (i work fast food and stand on my feet the whole time), i get to come home and change then go to a rheumatologist appt and as soon as i'm finished there i have a chiropractor appt. all that without so much as a meal inbetween :(
and im finding more and more often i'm so busy i either don't have time, i'm to tired to eat or make something, or simply forget to eat. my stomach doesn't always tell me "hey your hungry go eat" usually i'll feel the lack of food in my head by getting dizzy and just being out of it or my stomach will feel on fire and i'll take the min to think when i last ate and what it was.
what have you guys learned to help manage different symptoms?
It does we all good to vent sometimes and it's better than holding it in and member's will support you as best as they can and all these issues you've mentioned member's go through it daily so your not alone.
I do suggest the pain issue to your heart and how your arm is affecting you may not be an heart attack but you still need to be checked out at ER as they're not symptoms you can by pass and how your feeling in yourself through it all could always be causing this through an high anixiety level...because anxiety can cause these symptoms also.
If you don't want to go to ER then i do highly suggest either getting intouch with your specialist or GP to rule certain issues out.
well years ago evidently an old dr diagnosed me with tietze syndrome which i just found out when i picked up all my old papers from that office. i researched it and it explains about my chest a little bit and were thinking the left arm pain is a pinched nerve that gets more pinched at night by how i sleep
i go to the rhemy tonight and i'll bring it up to him as well as i go back to my chiro i saw him last night he took some xrays and i have to go back tonight and hopefully he'll help realign me and i'll feel a bit better. i asked mom to rub my back out a bit cuz it hurt and she said when she ran her hand down my upper spine that she could really feel the misalignment and all the disks that are there which is very weird
the electric shocks and my muscles nerves and bones bothering me are one of my symptoms that have become "normal",( i know not the best way to phrase it but you understand what i mean by a normal symptom), so its nothing to freak out or blow out of proportion. Ive learned when i have something new, different, out of the ordinary, or something that needs more important attention. now if it was a different pressure, more painful, or was constant and at the same time (arm pain and electric shocks don't happen at the same time), i would say its more important and go in and be checked out
i would never dismiss something i know shouldn't be easily ignored. im very tuned to my body and very careful with everything i do i know what hurts what doesn't how bad it is (though i can't always explain the feeling) what i can do what will prolly be to much when i need to stop when i can push through what i should try to help
after 5 years of dr bouncing and handling it on my own ive learned alot and im very careful
"Tietze syndrome" is a swelling to the chest i've just been looking it up more and you maybe getting your symptoms from this plus Lupus in general does'nt help facts but heres a link you may find interesting on the syndrome and another page from it....there's a fare bit of info about the condition plus this will also help other member's with information and thank you for bringing it up.
How did things go with your rheumo?....and how your mom mentioned feeling the misalignment and all the disks that's usually when you've either got some form of back trouble or a form of Arthritis....i was born with cervical spondylosis and my backs disfigured and arches in badly, so i'd definitely either see your GP or rheumo about that as you may need an MRI to see what's going on.
What your trying to say Mary is you've got used to certain symptoms like myself and you can tell the difference on when symptoms come from but anything stronger out the blue needs a ttention i'm like that and i'm soon up the GP's.
It's good how you've tuned in with your body because with Lupus the more symptoms your develope regarding A1 Diseases and autoimmune Diseases mixed the more you know the better.
Mary your welcome and please let us know when you can how things went today.
if you find my other post about have you ever...??? you'll see in one of the comments how it went
the short version though is it sucks he's a moron and i know more about it then he does and he clearly is barely taking me seriously and doesnt know what fibro is or anything and does not know how to treat an autoimmune disease
he thinks fibro affects the joints and that my gp can evidently handle all of it
like hello dummy if it was something they could handle i wouldn't be here
hes frusterating me and im thinking about getting a second opinion with or without mom knowing.....
i really dont care anymore i will find someone who will listen and who will say lets find out whats wrong and treat what we can like my chiro is
and as for the back and all that i'm seeing a chiropractor and he's realigning my spine i guess i carry my head in front of my body and my left hip is 1/4 in lower than my right I like him he's like so here's the problems lets fix them
thanks for the concern i'll get through this all....one step at a time
I'll look your other thread up in abit and thanks for mentioning it.
I'm not being funny but i'd look for a second opinion on your symptoms because your rheumo sounds like mine was...oh he loved doing the diagnosis of what i had but come to treatment would'nt go no furthur than plaquenil which i had to ask for but soon offered prednisone which i refused being a steriod...then we came to arguing about my past history and in the end i told him so your questioning Mr's who are surgeons on their diagnosis and my dermo knowing the situation and how bad it's affecting me as took the situation into his own hands and is now refering me onto another rheumo.
No he can't expect your doctor to treat you...my gp does'nt and won't give me medications for the lupus unless letters are sent confirming it but he as told me anytime he gets a letter stating for him to treat me he will.
I'd definitely sort something out better without your mom knowing if it comes to it because it's your health here.
As long as you get on with your chiropractor and carry confidence with him then things should be ok, that's the main factor with being treated...knowing the specialist is taking you serious.
Mary we're all here for you, all my love Terri xxx
If you don't have confidence in your rheumy, its time to change. My husband doesn't like my GP, but my GP is the one who recognized my symptons and helped with my diagnosis. I like him and I won't change. Its all about you, and your health. I am a mother, and we mean well - but we don't have all the answers. Especially if we don't understand what our kids are going thru. Many times, I know my son is dealing with something and I'll ask if I can help. If he says no, then I'll wait for him to come to me when he's ready. He's dealing with depression, and I try to walk a fine line and let him be responsible. But when I see he hasn't taken his med, then there's no car until he does.
I don't see anything wrong with getting a second opinion. My first visit with my rheumy, I wasn't so sure about him. But on my second visit, he changed my diagnosis from RA to lupus, and he recognized my weight loss efforts and didn't want to put me on prednisone. I felt a change in him and I felt this would work out. I was just wondering how old your doctor is? If they aren't taking you serious because you're young? Does your mom go with you to appointments?
I hope your keeping fine also today??....if you GP clocked your symptoms and you like it tham i would'nt change because it's very rare you get GP'S getting involved.
Oh i am sorry Trisha to hear your sons trying his hardest to deal with depression also...having it myself i know what he's going through and trying to fight daily.
Yes my mom goes with me to most of my appts and there's a reason for it
I'm still young and i don't always recognize everything going on. sometimes i over look things that she sees from not being me sometimes she helps explaining a symptom ive had *she listens to me rant about whatevers wrong all the time* and she finds better way to phrase things
i think i may take up that 2nd opinion with a different dr mine doesnt really take me seriously its kinda like hes giving me a few things to shut me up and leave him alone
ive seen him more than a handful of times he's an old indian probably in his 60s can't speak clearly yeahh one of those drs
I dont really have a dr who will take that step to refer me to another i don't think my chiro can do that for me as in referring me to a new rhemy and the only others i see are the gp and rhemmy
If your comfortable with your mom going that's all that counts because we've had some young member's like yourself where there moms have attended and they have'nt been able to get a word in and my mom was one of them years ago and sometimes this can hold you back but in your circumstances your fine about it.
So really your moms poiting over situations you'd most likely have a game to do with a specialist but when it's family it flys out your mouth and good of your mom for listening and taking it all in...then throwing it over at the doctor's.
Yes i'd seriously talk with your mom about having another opinion because it's no good being with someone who's giving you meds to keep you quite and being young you need to be monitored more on what your taking.
It's funny you on about him being an indian and not understand ing correctley....my dermo was off a couple of times so they parmed me off onto a lady russian doctor, well my accents broad spoken from where i was born and i'd never know nothng like it...we mays well have been both speaking Dutch and when i eventually saw my dermo i told him straight thank god it's you i'm seeing again i could'nt understand a word with the russian doctor.
Mary if you point your situation out to your GP about not being able to understand him and how your not getting the full treatment you need and ask your GP about being sent for a second opinion he/she should do that for you. xxx
i go in to find out what in the world happened this week with my bp n heart rate i still find it very scary and not something that usually happens and though im not letting it truly bother me it still irritates me that he wasn't concerned
if your normal bp and heart rate are 110/70 and 70-80 and for 4 hours it was running over 130/90 and 120 resting as well as it hit 149/95 and 140 you would think that would really institute some real concern especially with noone finding why it happened
Mom's like my big sister and were very close were almost always on the same page thinking wise though she doesn't always understand what its like to be so tired and have no energy but she tries to not pressure me to over do things like chores but she tries to remind me and help and not yell which it does help having this relationship with her because whats an average teenage stress is one i don't have to deal with though lupus can be a much larger inescapable one :(
Honestly i think moms just as frusterated going from dr to dr knowing that im not feeling good and knowing that im irritated that im not getting care i should its like were both the same person struggling with a lot of the same challenges the only difference is i experience physically all the challenges of lupus she has to sit there and watch not being able to do anything
First off let me apologise about spelling mistakes as i wear gloves while typing with my raynauds and some times it's a nightmare keep editing but you seem to know what i'm on about thank goodness.
Well when you go to the doctor's to see about your results please update we all on how it goes and what he/she says about a 2nd opinion on a rheumo if you do mention it.
They should be looking into why your blood pressure and heart rate are going like they are....some member's in the past have gone to ER with these issues and you can't let them pass because regarding lupus being involved sometimes abnything may be occuring....they seem very slow your end, so to say this.
It sounds to me like you have such a caring mom, not over pressuring you and also taking your illness into great consideration and that's wht we all need.
Yes i bet it is flustrating for you both seeing different doctor's where nothing being done and like you say you want physical help and your moms there going through the mental struggle of it all just wanting the best care for her daughter.
"I really hope things work out and something can be sorted for you".
Well the 24 hr heart monitor results showed that my heart rate ranged from 59 to 162 in those hrs all i did most of it was chill on the couch and watch tv sleep drive to get a new comp tues night and to my aunts right before i had to take it back in.... actually when it hit the 162 i had just finished breakfast not long before and was relaxing watching finding nemo...... actually a half hr before the spike i had commented that i felt weak and abnormally tired I actually say the NP in the group, ive never seen her before. I love her she is just awesome and shes like my chiro so i now have 2/5 drs ive decided i really like
shes sending me to a cardiologist because she honestly doesn't know whats wrong. idk if its really the bright side or not but i was actually having an "episode" when i was there so she hands on observed what was going on. i was keeping the door open cuz i felt so bad like i was going to pass out or something and it made me feel better thankfully i didn't she also put me on bystolic? idk the bottles not in front of me and im comfy and sleepy.... anyway she has me taking 2.5mg of a blood pressure/ heart rate control medicine.... its kinda scary thinking that im taking the same thing (prolly a lower dose) of what my 67 year old aunt as well as my 36+ cousin are taking
She also wrote me a referral to see another rhemy. When i explained that he was basically giving me meds to shut me up and that he thinks fibro affects the joints and thinks that the GP office should be taking care of me not him. and she completely understood how i felt
The 3rd dr i still have to make appts to see is an ent because of my vertigo and severe hearing loss ive had since i was little.... im pretty sure it's not lupus related but ive been getting alot of ear infections and i seem to be hearing less and less from that ear
and yes my mom is one of the few good things im glad to have gotten out of life and i wouldn't trade her for anything
This is great progress with the doctors in a very, very short period of time! Great job!
I have heart troubles too related to Lupus, but also it can be very common to have arrhythmia's. They are treated with Blood Pressure medications usually. I have a very rare type of arrhythmia that is different from what you describe - my heart rate goes up to 280 while resting, palpitations, chest pain, shortness of breath. My blood pressure does not change from it's usual low, low level. I couldn't take the bp meds to "fix" it and had to find a very special EP Cardiologist among EP Cardiologists to Ablate the condition - the one I have is located too close to the Sinus Node and special training is involved in the ablation process. I've now had 3 ablasions? Next I'll have a PaceMaker. I'm not allowed any exercise at all as it just agitates the condition.
Most arrhythmia's are not to this extreme, but sound more like what you are describing and IF you do have an arrhythmia (I'm NOT diagnosing you) - the Cardiologist will likely send you to an EP Cardiologist if it can't be controlled with the BP Meds. Only rarely do they require ablasion. I know folks who have had them though and they are better within a day after the procedure. They are not usually caused by Lupus.
I'm SO Happy that you jumped right on getting to some other doctors who could actually take action! It is miserable to live with palpitations and any kind of elevated heart rate at all!
