Have you ever experienced...? please pass on what wisdom you can

General
1

QUESTION 1

Has anyone ever had their blood pressure and heart rate increase dramatically when they are doing nothing active?

Earlier today i was watching a movie before i had to get ready for work and suddenly i started feeling light headed and dizzy and not well. i check my heart rate and everything and i was running about 143/95 with a 120 pulse

i called my mom (i'm only 18) and she ended up having an ambulance called for me and taking me in

after 4 hrs my bp and pulse were still spiking for no apperant reason

could this have something to do with lupus???

QUESTION 2

My dr is talking about putting me on predisone, planquil, naproxen, and a muscle relaxer as well as a sleep aid.

any of you more knowledgeable lupus fighters think this is a good idea or think it might help?

QUESTION 3

How do i know if my dr is taking good care of me?

Is there a way to tell that he's really trying or could it be me feeling irritated he's not doing anything and everything and on things i find rather important in my symptoms he's being dismissive.

Is he right to dismiss them and their not as problematic in reality or should i speak up feeling he's not doing what he should and either bring it to his attention or find another dr?

QUESTION 4

Any tips for falling asleep, staying asleep, and getting the restful rem sleep?

i think that's all i have for now

feel free to answer just one or all

thanks everyone

your wisdom being passed on is much appreciated

Mary

2

Mary

My heart will run fast and skip beats sometimes. It usually happens when I am scared, upset about something or I am not feeling well. I can’t say it has anything to do with lupus. I had panic attacks for a long time where my heart raced and I could hardly breath. Most of that was caused by fear.

The best advice I can give you is to listen to your body and if you need assurance your doctor needs to give you that not anyone from LWL! Yes you need to speak up and let him know how you feel about the situation. Holding it in is only going to cause you more stress, which will cause your BP to rise and your heart to best faster!

With regards to sleep. I find taking a long warm bath and doing biofeedback at bedtime to help relax me. However I can’t promise you will stay asleep. This is one problem most of us have here. I hardly ever get a good night sleep and therefore I may not be the person to answer this question.

With regards to the meds: what your doctor wants to prescribe is not out of the unordinary for a lupus patient. The medication can be a trail and error situations so you will have to make that determination.

I wish you the best of luck… Deenie

3

Dear Shortie,

Hello, so sorry that you are going through this at such a tender age. I do not have a full diagnosis of Lupus, many of the symptoms, but I am fully diagnosed with 3 other autoimmune diseases. I am not the resident Lupus expert, but I think I can answer some of your questions.

My blood pressure has always been a reliable low side of normal reading. Pain from Autoimmune Arthritis has often sky rocketed my BP, it comes from no other source within me, according to my GP, and Rheum.

Sleep disturbance always comes with chronic pain, valium helps me to fall and stay asleep best because it loosens up the muscles that I tend to 'clench' from being in chronic pain.

There may be other explainations to this that come with your disease, and others will advise you if I am incorrect.

A dismissive Dr is not for me, sooner or later I will explode on them. I do not tolerate that behavior well, I feel they have chosen the wrong profession if they cannot respond to someone with a serious disease with genuine issues to discuss, better than that. They should have chosen Pathology if they don't have more patience and compassion than that!! Perhaps you should come right out and ask them if you have offended them for them to treat you as they do. Just clear the air, see how they respond, you'll know if you really want them as your Doc, as the one you will want to turn to and rely on as you fight this disease. Perhaps you already know the answer, if not, find out, why waste time?

Sorry I came across this way but that just really IRKS me that you were treated this way, fires me up everytime!

I know that the meds prescribed for you are meds used with many here with Lupus. As others respond they will tell you more!

This is a great group, they will be posting more infor for you soon! Hope you are feeling well, and can stay strong, and honey, don't let them push you around or try to intimidate you!!

Big hugs,

SK

4

Hi Mary,

My general doctor keeps a close eye on my bp. I too have had mine increase sitting still. However, any fear about it happening will keep it up. So I take my bp...sit...take it again.. rest...take it again. ..before I get concerned. It is the pattern of consisitenly staying up. Since I've learned my body better, I understand certain things about it. My doctor explained eating bacon for breakfast can make it go up momentarily...too much salt in our diet...or retaining fluid. I was put on a bp med that has a mild diurectic and it has helped a lot. Keep a journal when you notice it and be sure to talk to your doctor. If you have any doubt...feel weak..dizzy...get it checked right away.

My heart rate began climbing last summer and it was 130 resting. It affected my sleep. My doctor did put me on a med to slow the heart rate (1 tablet at night before bedtime). It definitely helped. It stays between 65 & 75.

One interesting note. When I was in Colorado last summer(high altitude) ,...when my oxygen rate went down...my heart rate went up. So when I was there, I was put on oxygen 24/7. When I returned home, I only had to use it at night.

Your third question? Time will tell and you have a "gut" feeling sometimes. I've just recently began going to a rhuematologist ..... and my comment to him was..."I hope you can connect all the dots in my symptoms so I can see the picture!" He agreed he would try and do that. He hasn't gotten in a hurry and I've had to be patient with him...realizing he just is getting to know me. But I have confidence, he cares, is knowledgable, and on the cutting edge of knowing the lastest treatments.

You are so young to have to deal with this...and I so feel for you. This site will help you so much. There are those who have had lupus for years and have much greater knowledge and imput than I. However, we all deeply care about the things that affect you and your wellbeing!

Take care of yourself....give yourself a break....slow down...and don't forget to eat healthy food to replenish your body.

Faye

5

Well as for the heart rate and all that i noticed this morning just after i ate is when it started increasing
i'm kinda glad i got the monitor on and they can see whats going on
I'm way to young to really be having heart problems to worry about on top of everything else :P
When its happening i'm not anxious, worried, mad, nothing
Both days i was watching kids movies after i ate just relaxing (cars 2 yesterday and finding nemo today)
my BP is normally about 110/70 with a 65 ish heart rate so hitting a 144/95 with 140 pulse and noone can see the reason why because i wasn't anxious or anything or being active yeahh its really concerning
*Most of my family on both sides have heart disease, high BP, high Colestoral, moms side has something Angina, valve problems, blocked arteries, heart attacks, strokes, ect.....**

as for the medications its just kinda like i'm barely out of high school and i'm having to take so many meds to help me function and sleep and this that and the other and its a bit frusterating there and i wanted to make sure he's putting me on stuff that has benificial tendencies rather than junk i don't need to be on *ive had plenty do it to me before**

As for the dr himself, i went in there yesterday with a heart monitor on and told him what had just happened not a few hours prior and he didn't seem concerned. Not concerned by my heart freaking out, difficulty sleeping, severe lack on energy, eating difficulty and loss of appetite, weakness, pain in my left arm, increase in my hearing loss, sores in my mouth, none of it
He keeps saying i have fibro with lupus in the back ground and that fibro affects the joints and i don't have arthritis. I almost stood up and said look dude are you a moron or something?! i had nodules taken out of my foot that were biopsied and told that they where rheumatic nodules and they go hand in hand with RA.
He also keeps trying to say that he can't do anything to help and that most of it my GP should be dealing with and a few other more specific things like the sleep he wants to send me to a sleep dr and just grrrrrrr drs are stupid!

I got some sleep last night though :D i took some tylenol PM and it made it easier to go back to sleep when i wake up in the middle of the night. I would wake up go do somethign like bathroom or get a drink lay back down and was back to sleep with in 15 mins so YAY!!! downside.... i really don't wanna get dependant on it again

Oh and as for my left arm pain its possible a pinched nerve or a pheriphial neuropathy? i think that's what it is anyway.... so either way its a problem with my nerves.......

The chiro is trying to help out and realign my back and everything and work out that pain and hopefully it'll help in the all around he has me seeing him 3 times a week..... i finally had a dr say wow you are messed up but thats ok were gunna fix it here are the problem areas good thing you came now cuz this couldve gotten alot worse
That's the way i understood it anyway but it makes me happy someone finally sees and wants to help
that mightve been the other reason i slept better last night.... i had my back cracked yesterday by him and he's doing it again today

Oh back to the whole reason i was in the hospital yesterday question.... Could Cymbalta 60mg twice a day have done anything to make it happen? ive been on cymbalta for 3 months and he increased my does after about 2 months from the 30mg twice a day to 60mg

Thank you all and thanks for caring
Sometimes i forget i'm not alone and though noone near me physically in my life understands at least you guys do and i still have someone to turn to

6

I see this site.....not for medical advice (your doctors do that) but to be here to support and encourage you in your questions, fears, and the unknown. I'm thankful they are checking you with the heart monitor.

7

Hello Mary,

Lupus even though we don't have to be over active can cause severe anxiety attacks besides panic attacks which Deenie mentioned and it takes such a while for it to carm down...a large majority of us have been there including myself and when it happens with me, all i want is air and to get outside as it can make you feel clautrophobic besides having an heart attack 10 times over....but this is one bad experience with Lupus when it does happen besides any autoimmune disease which causes this same affect.

I'd say it's according to your first time on taking medication because all drugs carry side affects and some people get affects from a drug and other's don't....if you do have prednisone ask for the tablet that should be took also to stop osteoparosis, prednisone is for the joints and swelling, plauenil can cause some people bad side affects also, it did me but not second time around altering the time i took it and that drugs for DLE mainly but also helps joint pain. Naproxen never took it but concerning a muscle relaxer definitely concerning Lupus as it cause spasm contractions.

A good doctor in my eyes is how my Dermo is...does bloods regular, tells me how my bloods are and if anything else as shown up, anything i can't understand he expalins more into besides doing print off informattion and also print off's on my blood tests and also he also explains why the best meds would help me and checks them against any other meds i'm on for counter reaction and starts me off on a low dosage to see how my body reacts but always lets me read about the drug first for the next time i see him...and if i don't want a drug then he does'nt push it.

Staying alseep and sleep in general other member's may help you better...as i take other drugs for other issues that knock me out but if i do have nights where i'm unsettled or known i'm going to be i take valium to help.

Best of luck Mary. xxx

8

Hello Mary!

Occasionally I feel my heart palpitating fast, sometimes when I eat certain things.. Like cantelope.. Or when im sitting around doing nothing at all.. For me.. When this happen.. I sorta freak out, but then I try and do some breathing exercises to try and calm it down, which has been working out for me so far.

I'm still pretty new to lupus, as I was just diagnosed myself so everything is still up in the air for me.. Im currently on Plaquanil and prednisone right now, and theyre helping me out so far, minus the lack of sleep. For the sleep, whenever I get tired, I sleep right away, regardless if I cant sleep at night... If I cant sleep... I usually just lay in bed and try and focus on body limbs, telling them to relax. Like i'll start with my legs, and focus on relaxing them. Once I feel like theyre relaxed, I focus on the next limb until my mind starts to wander and drift off.

I hope that helps, good luck and I hope you're doing well!

-Julie

9

Hi Julie,

Now that's a good statement you've just said...... If I cant sleep... I usually just lay in bed and try and focus on body limbs, telling them to relax. Like i'll start with my legs, and focus on relaxing them. Once I feel like theyre relaxed, I focus on the next limb until my mind starts to wander and drift off.

As the old sayings always been count sheep....but that's a good way of helping alot of member's "Thank you" xxx

10

Hi Mary,

I've noticed that sugar will make my heart race., I've noticed this when I lay down in bed. My blood pressure and pulse have always been low. Its just 'normal' for me. You've gotten alot of good comments here, and I've gotten alot from them. I too, have problems sleeping. I have good nights and bad nights. Mostly sleepless nights though. If I get a nap, a short one, I will sleep more restful.

I started taking plaquenil, and meloxicam for pain. We decided against the predisone, because of the weight gain. I also take a diuretic, because I have so much swelling in my feet. I think my fatigue has improved somewhat, but I don't notice any improvement with swelling. I've just been diagnosed 2 months ago, so this is new to me also.

Thanks for the great post, we all benefit from each other's questions!

Trisha

11

I wasnt freaking out or anything like that i was just mindlessly watching tv. one of those the tv is on your watching and paying attention to it but its very in one ear out the other blank thoughts relaxed

as for my cymbalta.... why would it affect me now and not earlier?
Ive taken naproxen before... its just a simple anti inflammitory
Thanks for the info about predisone and the side effects with that and how to counter some of them... the weight gain with it is no biggie for me im still in kids sized clothes im 5ft and maybe 110lbs i actually get happy when my weight goes up so not a horrible side effect
The muscle relaxer he put me on is called methocarbam 500mg? sadly this is one i haven't heard of or crossed before

Tez20 is that really what a dr should be like? cuz if it is than mine is SERIOUSLY off the mark and should find a new profession

for sleep im taking some tylenol pm cuz it helps more than the muscle relaxers he's previously given me..... im kinda skeptical to take the methocarbam stuff he gave me cuz idk anything about it past its a muscle relaxer

Back to my heart problem.... I was in the hospital for 4 hrs. i was calm, not active, not anxious, nothing just laying there more or less thinking im really tired i wish i could roll over on my side and man those machines need to shut up..... i would be fine and just talking with mom and the next thing i know im starting to feel it coming on again and have them come check my bp n stuff again and it was going back up
It happened again today and im thinking there maybe a corolation with me eating and having a "episode" im currently tracking my bp, hr, and sugar level before i eat and every half hr after for 2 hrs as well as last thing at night and first thing in the morning
when i got into the ambulance yesterday and they checked my sugar levels i was only at 75 when i had eaten 2 muffins and a glass of sweet iced tea not 2 hrs prior so it shouldve been alot higher than that
Hopefully i find out friday what the heck happened or is going on......

as for the focusing on relaxing or counting sheep for sleep.... they actually make me more awake because they force my brain to remain active rather than relax
I used to take a shower at night to sleep but now ive learned that when i wake up and my body feels all stiff and like its being weighed down that a shower helps
my couch is my bed right now because one my bed is covered in stuff cuz i'm starting to pack for college and 2 my bed is uncomfortable and i just cant get into a comfy position

Julie- i sleep as often as i can without over doing sleep usually i end up about 12 hrs but mind you its not very restful or energy restoring. I take everything i do as easy as i can and stay tuned to my body to be sure i don't over do it.

I'm a bit worried about tomorrow though.... with whats been going on with my BP and all that isn't good
tomorrow i have a dentist appt for some fillings so their giving me some novacaine well before all this started the last few times ive had it ive noticed it raises my heart rate and makes me feel horrible and like i may pass out so put the problems already going on with something i know causes the problems as well and you get a not good situation. i have a neighbor driving me there and she knows how to get ahold of my mom and where to take me and all that jazz if anything happens. Not like the hospital will do anything for me cuz high BP n pulse are symptoms not problems and they gotta find the reason for it happening. I kinda call it my chests form of a concussion cuz like with concussions they hospital wont really do anything but rest ice pain meds and antiinflammitorys.... ive been in with enough of those to know the protocol

im just going to keep doing everything a little at a time and handle things as the come
keep calm and always put my health above anything that needs to be done
i just hope i find out whats going on.....

12

Hello Mary,

Yes that's how a good specialist in he/she's field of work should be and my Dermo i can nevwer fault and i've even added him to the thread on doctor's recommended for the UK....yours is just way off line, he reminds me of a doctor studied in the field to get his qualifications and could'nt be bothered after.

The medications he's offered i don't know about them as i've not been on them, i've only been offered prednisone, been on plaquenil and taking it again till i see my new rheumo and also Dapsone which is used rarely as it can affect your organs and it was affecting me so i was pulled straight off it.

Regarding your chest issues... the syndrome you mentioned in your other thread could be casuing it but lupus also cause several chest issues besides heart trouble but if your sugar level was down like you've mnetioned and i suffer with low sugar this can cause severe anxiety because your body is crying out for sugar it's a stimulant to our system and going to low can make how stress levels go up...i eat chocolate daily to try and keep mine ok as i've had my levels trop as low as 2.0 which is low and it never goes no higher than 4.0.

With lupus it can make your brain active unless it as took you low and lack of concentration kicks in there all you want to do is rest because your mind can't focus on nothing....well i hope they can sort this before you head off for colleage.

((Hugs Terri)) xxx

13

Well i got another question

My mom came home from work today and said she talked to a nurse *she was there because they were doing high bp tests** and i guess the nurse said she knows and has studied about lupus

anyway the question is: Could cutting out wheat and caffine help?

How about any other diet changes?

14

Hello Mary,

Cutting out caffeine does help but i still drink my tea and alot of member's have cut out gluten or halfed the amount they have because to much glutens not to good for we but concerning wheat that's fine and especially if you suffer with IBS troubles... which lupus causes that helps where constipation is involved.

Maty this link may help you food to eat with Lupus.

http://www.livestrong.com/article/442024-foods-to-eat-for-lupus/



SweetShortie2012 said:

Well i got another question

My mom came home from work today and said she talked to a nurse *she was there because they were doing high bp tests** and i guess the nurse said she knows and has studied about lupus

anyway the question is: Could cutting out wheat and caffine help?

How about any other diet changes?

15

Hi Mary

If your potassium is off, it can affect your heart. Potassium helps to regulate the heart beat. If you get dehydrated, then your potassium gets low. Its just a thought, and something to check.

Trisha

16

Thank you guys i'll look at the links a bit later when im not so blehh and tired

its so difficult to try to change my diet when im such a picky eater as is
most of my meals are something with a combination of carbs meat and cheese
unless its breakfast than its either a bagel, muffin, or a bowl of cereal

and back to irritated because i can't figure out whats going on i feel pressure on my chest and like my hearts pounding out of my chest but it says my bp n everything is fine and ive been watching my blood sugar because i notice it starts happening after i eat and it doesnt matter what i eat and i just wish i could figure out what was happening inside my body

17

Hi Mary,

Trisha is right about potassium levels but if they get to high in the system they can also upset your kidney's....it's abit of a game really to try and get the right amount of level in you. xxx

18

Hi Mary,

QUESTION 1: response: I have a mitral valve prolapse that cause my heart to beat irregular at times. Plus, most lupus patients have ended up with high blood pressure. That's why your pressure is monitored so closely as your kidneys can suffer damage if your pressure is not kept under control. However, your pressure would have to be high for a very long time to do damage to your kidneys. But with your family history of heart and high blood pressure, I suggest that you manage your diet very well by eating healthy and getting plenty of exercise. Since we are all victims of our genes, we have to take care of ourselves even at a young age as yours. It will catch up with you. I know!!!

QUESTION 2: response: Since you did not mention what kind of doctor is treating you, he seems to think you do have some sort of auto-immune disease since he put you on prednisone and plaquenil. That is a good call. You didn't mention what kind of sleep aid he put you on. I am hoping you don't use it but as a back up plan when all else fails. Tylenol PM just contains benadryl which is harmless. If you only use it as directed you should be fine.

QUESTION 3: response: First thing you need to do is be pro active in your care and treatment. Learn all you can about your condition. I suggest buying a book by Dr. Daniel Wallace called "The Lupus Book". This book has every answer in it that you will need. I never needed another book after I bought this book. He is the best researched and doctor in his field, highly respected and very well known. You can buy his book anywhere!!! Also, there are online support groups, I belong to several...this is a very good one. If you are on Facebook, there is a group called Lupus Warriors. We are a closed group. If you would like to join, I would be happy to recommend you. Just let me know. Another group I belong to is: http://www.thelupussite.com That is probably the first group I ever joined.
Also, www.patientslikeme.com is another place where you can keep up with all you test results and log them.

QUESTION 4: response: Having trouble sleeping does go along with Lupus. Usually it's the pain that keeps you awake. Some of it could be your medications. You need to check the side effects to see if that is one of them. You mentioned that you were taking, Cymbalta. What time of the day are you taking it? My neurologist told me to take it 1 hour before going to bed to help me sleep. Also, try to get up the same time each morning and got to bed the same time each night. This will help set your internal clock making it easier for you to fall asleep and stay asleep. I this is hard when you are young and want to do things with your friends. But try to stick to a schedule as much as possible. I know it sure helps me. Also take your meds at the same time every night.

ALSO, make sure you drink plenty of water with all your meds!!! My lupus went into my kidneys!!! I've never been a big fan of water. But, I don't drink sodas either. I mostly drink iced tea all year long, since I live in the south. Even though it is mainly water, I needed to drink more water. I am also a BIG fan of coffee!! When I was working, before I became disabled, I drank coffee all day long at work!!! Now I am suffering for it. Starbucks, you may be ruining some people's kidneys and not knowing it!!!!!!

Anyway, Mary.....I hope I help. I was diagnosed in 1995. I am a survivor. I feel like I may not be a nurse, nurse practitioner or doctor, but I am a patient and I know first hand what having lupus is all about!!! God Bless!!

19

I've definitely had some funky heartbeats in the past. I'll just be relaxing and all of a sudden my heart will seam to skip a beat. I had this a lot a year ago, and went to cardiologist to get a stress test done. The doctor said I apparently have something called "mitral valve leakage." He explained that it's a harmless condition where your heart can beat fast for no reason, but I'm a little fuzzy since it was a while ago. I also cut down on some of my caffeine intake and noticed a considerable drop in the fast heartbeats. Good luck and keep us posted on how you're doing!

20

Hello Lark,

It could be your condition of "Mitral valve leakage" causing your symptoms besides lupus on top because it can cause your palse to go faster but helping with caffeine will help you.

Here's a link on the condition you have if you've not already looked it up. xxxx

http://www.patient.co.uk/health/Mitral-Regurgitation.htm

Lark said:

I've definitely had some funky heartbeats in the past. I'll just be relaxing and all of a sudden my heart will seam to skip a beat. I had this a lot a year ago, and went to cardiologist to get a stress test done. The doctor said I apparently have something called "mitral valve leakage." He explained that it's a harmless condition where your heart can beat fast for no reason, but I'm a little fuzzy since it was a while ago. I also cut down on some of my caffeine intake and noticed a considerable drop in the fast heartbeats. Good luck and keep us posted on how you're doing!