I have cut back on coffee, and drink alot of water. I'm not a fan of it either, but I add sugar-free water enhancer like Mio liquid. Kroger and Wal mart have their own brands. I'm not a soda pop drinker, once a week maybe. I can't handle the carbonation. Increasing water is suppose to help with joints, and dehydration increases fatigue.
Trisha
Update::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
Zigsmom: They said its not a side effect of any of my meds nor is there an obvious cause. my meds aren't mixing and are fine to be taken together and they think there is really something wrong with my heart
The dr saying he's gunna put me on all that stuff is a rheumy but he's a moron with his head in a hole..... he's just saying stuff but not actually doing anything.. idk which post i said it on but he seems to think fibro affects the joints and from all the research ive done it affects the muscles and nerves its arthralgia that affects the joints and i even asked my gp when i saw her earlier and she said i was correct. she referred me to a new rheumy
I do and im always on the hunt for new information and ways to help specific symptoms without meds. I HATE being 18 and having a collection of meds that i swear is as big as my grandmas
I don't knowingly wake up in pain often actually very rarely had i before my left arm pain had started and now my chest alot of it was i would wake up and couldn't fall back to sleep for the life of me. All my meds are taken twice a day in the morning when i wake up and sometime usually about 6hrs later. I try very hard to not take any meds unless their sleepaide/ pain management after 7pm mind you i go to be close to midnight. It's hard to put me on a schedule because i work at a 24/7 fast food place and work all kinds of shifts one day i can be working 7-2 have a day off and work 12-7am get the rest of that day off and work a 5-12 the next day
koolaide and iced tea are my weaknesses. its usually what i drink 90% of the time. if i have coffee anymore its usually not more than 2cups max and caffeinated pop was always 1 can a day no more. moms trying to get me to cut down on caffine i still drink, I.E. coffee, tea, chocolate, ect., especially because of my heart problems atm right now im switching to powerade and water if i can but it can get expensive especially when i hate the taste of tap water
The heart problems i'm having are not simply skipping a beat. it's difficult to explain but i'll do my best. basically my pulse when im just chillin watching tv gets very high. i'll feel like my heart is beating against my chest so hard it hurts. and then there's pressure so i feel like my lungs are being trapped in a cage and can barely expand normally. *deep breaths will make me light headed** then my left arm will start to hurt so bad that if i move it i'll feel like knives being dragged down my muscles. and i'll start to feel the pounding headache and my heart racing in my ears. i'm abnormally calm when its happening.
now not at the same time but during random not strenuous activities like standing and talking, i will feel like an electric shock goes through my heart and man does it hurt. i actually have to stop what im doing put pressure on my chest and wait for it to pass. *the easiest way to explain it is kinda like stubbing your toe execpt you can feel it go through your heart and its ALOT worse** some of these things are very hard to stay calm and relaxed and not freak out about but i learned that even though i know somethigns wrong and it's scary, if i stress about it its not going to help anything, and it increases the chances of making it worse.
Trisha:: i cant drink mio because we found it affects moms chest/heart/lungs in a weird way and were slowly learning that alot of allergies and things like that she has i have and it happens more often than not
well i think touched on everything between my last post and this one if i missed anything let me know
i'm rather tired because of some meds and i'm going to sleep
thanks for all the help i hope the more i learn now the more wisdom i have to offer to others later
Hi Trisha,
Coffee gives me headaches and i drink tea about every 10mins but i think the sjogrens besides my tegretol cause dryness alot and i'm surposed to live on water but i hate it, so ste gets in water flavoured and when i do go dehydrated the bottles are soon gone.
Drinking the water like you say helps with fatigue and the brain but helps the organs alot besides joints.
Love Terri xxx
sunrisetrisha said:
I have cut back on coffee, and drink alot of water. I'm not a fan of it either, but I add sugar-free water enhancer like Mio liquid. Kroger and Wal mart have their own brands. I'm not a soda pop drinker, once a week maybe. I can't handle the carbonation. Increasing water is suppose to help with joints, and dehydration increases fatigue.
Trisha
Hi Mary,
Your heart rates do go high and especially with what you did there's no pressuring the heart really, i do hope they can sort out what's happening and if the NP is ok and you trust her...well at least your getting there slowly with specialists.
Mary as long as the meds help that's what mainly counts...Lupus can cause some severe affects on our bodies in general and it's better to take something which will hopefully help until they find out what's wrong than having severe symptoms....well i am pleased she's listened to you and is refering you onto another rheumo "Congratulations" on that score mate and i'm under ENT for TMJ Disease and also Sinusitis, Lupus can affect all these issues besides what your being refered on for.
Mary i know it's alot for you being young but all issues started with me at your age and i'm 44 soon...it is hard but i was on steriod jabs and 30 odd tablets daily all through wrong diagnosis but since then issues have never stopped but as long as you have your meds in order and also working try and keep going best you can.
All i can suggest and i know it's hard but try your hardest to keep carm because Lupus thrieves of depression and stress and will make your symptoms feel double what they are.
All my love Terri xxxx
That's funny i have TMJ too!
head to toe if i actually think about about my problems are::
migraines, severe hearing loss in my right ear, focus problems, fatigue, chronic ear and sinus infections, tmj, acid reflux, lactose intolerance, electic shocks through my heart, the high pulse and random spiking BP, pluersy, rheumatoid arthritis (i had what they called rheumatic nodules removed off my left foot after 5 years), waking up stiff sore and like there's weight on me, a constantly changing appetite, muscle pains that make me feel like i was hit by a bus, insomnia/trouble falling asleep and then waking up for hrs on end in the middle of the night, falling arches in my feet, severe tendonitis in my legs, raynauds phenomenon, mouth sores. I think i got all of them
And with the meds its just a pain im already up to 10 :P
Hi Mary,
I've had alot of those issues and i've noticed as time goes on, there's always something else ready to pop it's ugly head...there's also a Raynauds Group for you to join.
It's all about discussing your issues on them..which does help at times and also alot member's of other issues which can also occur...i know it's alot at 18 but life can be hard and we have to deal with what's thrown at we. xxx
raynauds really isn't the worst of it. so i wear 2 pairs of insulated socks insulated shoes long johns tights jeans a cami a long john shirt a long sleeved shirt a few hoodies and a coat and try to make sure that i have a hat on when i go out and either gloves on or my hands are in my pocket.
in the winter that's all normal for me and i don't know any other way for winter to be. i can't play outside with my nieces or friends and have snowball fights and be silly but i know my limits and if there's snow it means im inside. this winter is going to suck this year because my mom would always clean my car out for me and since i leave for college next month i won't have her to do that :/
i know its hard and we have to just deal it doesn't mean it doesn't suck but it also shows how mch stronger i am than everyone else
Mary,
It's all fleeces and thermals in the winter with fur boots if i need to go out and during the summer the slightest dullness and i go freezing so it's changing clothes again and i type in gloves, that's why my spelling is cocked up half the time.lol
I bet you'll miss your mom in so many ways and i totally agree with you, we can't run away with what the cards have been dealt we in live and staying strong as possible will help you as much as it can. xxx
SweetShortie2012 said:
raynauds really isn't the worst of it. so i wear 2 pairs of insulated socks insulated shoes long johns tights jeans a cami a long john shirt a long sleeved shirt a few hoodies and a coat and try to make sure that i have a hat on when i go out and either gloves on or my hands are in my pocket.
in the winter that's all normal for me and i don't know any other way for winter to be. i can't play outside with my nieces or friends and have snowball fights and be silly but i know my limits and if there's snow it means im inside. this winter is going to suck this year because my mom would always clean my car out for me and since i leave for college next month i won't have her to do that :/i know its hard and we have to just deal it doesn't mean it doesn't suck but it also shows how mch stronger i am than everyone else
Terri,
I just red that green tea helps inflammation. I haven't tried it, I'm researching changes in my diet to reduce the inflammation. I think cutting out the gluten is the way to start. I know for myself, I weigh less in the evening than I do first thing in the morning which is just the opposite from what I used to do. I have more fluid retention in the morning. I try to drink min of 84 oz of water a day. Its easier for me to do while I'm at work, when I'm at home I would rather have the coffee : )
Tez_20 said:
Hi Trisha,
Coffee gives me headaches and i drink tea about every 10mins but i think the sjogrens besides my tegretol cause dryness alot and i'm surposed to live on water but i hate it, so ste gets in water flavoured and when i do go dehydrated the bottles are soon gone.
Drinking the water like you say helps with fatigue and the brain but helps the organs alot besides joints.
Love Terri xxx
sunrisetrisha said:I have cut back on coffee, and drink alot of water. I'm not a fan of it either, but I add sugar-free water enhancer like Mio liquid. Kroger and Wal mart have their own brands. I'm not a soda pop drinker, once a week maybe. I can't handle the carbonation. Increasing water is suppose to help with joints, and dehydration increases fatigue.
Trisha
Mary,
My heart goes out to you for dealing with all this at such a young age. You are a very strong young woman for the way you handle everything. Try to take things one day at a time. Live in the 'now' and like you said, try to remain calm not cause yourself more stress. I have severe tendonitis in my legs, and fallen arch as well. I actually have a ruptured tendon on my right foot. Yesterday, I tried to stretch my legs to relieve the pain, and I felt the pull in my foot and sometimes think I can't win for losing : ) Today is another day though.
Trisha
SweetShortie2012 said:
That's funny i have TMJ too!
head to toe if i actually think about about my problems are::
migraines, severe hearing loss in my right ear, focus problems, fatigue, chronic ear and sinus infections, tmj, acid reflux, lactose intolerance, electic shocks through my heart, the high pulse and random spiking BP, pluersy, rheumatoid arthritis (i had what they called rheumatic nodules removed off my left foot after 5 years), waking up stiff sore and like there's weight on me, a constantly changing appetite, muscle pains that make me feel like i was hit by a bus, insomnia/trouble falling asleep and then waking up for hrs on end in the middle of the night, falling arches in my feet, severe tendonitis in my legs, raynauds phenomenon, mouth sores. I think i got all of themAnd with the meds its just a pain im already up to 10 :P
thats one of my favorite things to remember
The past is the past you can't change it so don't live in it
The future is yet to come so why fret about it
live in the present and rememeber what you do now helps carve your future
take it all one day at a time and do what you can.
Sadly todays a day moms trying to push me
i worked 5 hours last night and im beat i fell asleep early like before midnight and was up for a few hours in the middle of the night and ive slept till about noon because of being up in the middle of it all
she keeps trying to tell me not to sit and watch tv and play on the comp all day like i usually do but whats the point on getting ready if i'm not going anywhere?
Hi Trisha,
I do wish you the best with your green tea as ste used to drink herbel teas in the past and i've tried them the taste alone is terrible....i know i have way to much Gluten and it's not helping my IBS one bit, it's actually got to the stage where i'm getting worse with it on certain foods i eat.
Trisha you should'nt way more in the morning really but there again without proper sleep your body is still being kept awake and functioning more and although water is surposed to be good for us, if i drink one bottle i fill up like i've just had a massive meal and fluid retention won't help you one bit...why don't you ask your gp besides for some water tablets to see if that will help your problem.
Trisha if your in a job where your standing alot that does'nt help fluid retention one bit and how you love your coffee at home it's tea with me.lol xxx
sunrisetrisha said:
Terri,
I just red that green tea helps inflammation. I haven't tried it, I'm researching changes in my diet to reduce the inflammation. I think cutting out the gluten is the way to start. I know for myself, I weigh less in the evening than I do first thing in the morning which is just the opposite from what I used to do. I have more fluid retention in the morning. I try to drink min of 84 oz of water a day. Its easier for me to do while I'm at work, when I'm at home I would rather have the coffee : )
Tez_20 said:Hi Trisha,
Coffee gives me headaches and i drink tea about every 10mins but i think the sjogrens besides my tegretol cause dryness alot and i'm surposed to live on water but i hate it, so ste gets in water flavoured and when i do go dehydrated the bottles are soon gone.
Drinking the water like you say helps with fatigue and the brain but helps the organs alot besides joints.
Love Terri xxx
sunrisetrisha said:I have cut back on coffee, and drink alot of water. I'm not a fan of it either, but I add sugar-free water enhancer like Mio liquid. Kroger and Wal mart have their own brands. I'm not a soda pop drinker, once a week maybe. I can't handle the carbonation. Increasing water is suppose to help with joints, and dehydration increases fatigue.
Trisha
Mary,
So true in the first part you put about the past is the past because i used to look at my past before i took ill and i've realized over the years there's no turning back.
Well i think to say your working and you keep things tidy you use otherwise in the home...why keep on, all your doing is resting your body but if your moms an active person she may look at you and think you should be the same as lounging about won't help you one bit but people need to have Lupus to understand the full facts of what it causes plus quick fatigue and exhaustion ontop. xxx
SweetShortie2012 said:
thats one of my favorite things to remember
The past is the past you can't change it so don't live in it
The future is yet to come so why fret about it
live in the present and rememeber what you do now helps carve your future
take it all one day at a time and do what you can.Sadly todays a day moms trying to push me
i worked 5 hours last night and im beat i fell asleep early like before midnight and was up for a few hours in the middle of the night and ive slept till about noon because of being up in the middle of it all
she keeps trying to tell me not to sit and watch tv and play on the comp all day like i usually do but whats the point on getting ready if i'm not going anywhere?
this is very true. now i dont know exactly what goes on in my moms mind but a good guess would have to be that she wants to think of me as not having lupus as not having something for the rest of my life and to treat me as though i have nothing wrong. and i hate to break it to her but i do have lupus and i have to live with it for the rest of my life and i will never be a normal child. i will never have the energy or anything like other people my age.
but shell eventually accept it, at least i have and i hope she will too
Hello Mary,
I'd say 80% it's true, wheather it be parents or close family alot of people won't except illness because of knowing that person as always been ok.
Take my parents for instance my mom excepted my seizures from the off but in all the time i had issues until he died 9yrs ago he would not except that i was bad or deal with me if i needed help.
I'd say there's a good chance your mom thinking your fine and it's a lazy stage your going through...i'd definitely sit and chat with your mom more and really break down to the terms of how it's affecting you and hopefully for your sake she'll see it in a different light.
Mary
I am the mother of a 17 yr old daughter and 18 yr old son. My son suffers from depression, and the moment we were in the doctor's office and I heard him say he'd thought of suicide: my heart stopped. A mother doesn't want to hear that her child is hurting and there's nothing she can do about it. You and your mom are in different stages of acceptance. You have been on here educating yourself and adjusting to it. Give your mom some time. I know for myself, there are many days that I want to do nothing more than stay in my jammies and lounge around. But I feel better when I get up and take a hot shower and start doing something.
Trisha
Hi Trisha,
As i said before i do feel for you with your soon and depression is a major concern because of issues it can cause but i do hope he's picked up a little from when we last spoke.
All my love your way xxxxHi Sweet Shortie,
I may have already answered this somewhere?
Question One: YES. I have a rare arrhythmia associated with Lupus that causes my resting heart rate to go up to 280+. You don't even want to know what my active hr is! The reason it is different from other more common arrhythmia's and that it is difficult to repair and control is that it also "lowers" my already low bp instead of raising it while it is occurring. I have extreme chest pains, shortness of breath and palpitations while this is going on. I've had several surgeries for the condition - it used to happen every 15 minutes prior to the surgeries. Now it only happens once every 1 or 2 hours.
I do not know about the common arrhythmia (as it is a common issue among lots of people) that you are describing being caused by Lupus - but the rare one that I have is related to Adrenal and Heart Involvement in Lupus. I have to see a special special EP Cardiologist for the stupid thing. There are only 4 in the US who understand and can treat my particular arrhythmia. The other arrhythmia's can be treated with meds - usually with much success and probably by a regular Cardiologist. This also happens with anxiety attacks.
Question 2: Those sound like basic starting off meds. Perhaps they will even work! :)
Question 3: I'm lost as I don't understand what he is undermining. The meds sound correct. It is a lot of trial and error since there is no cure. He has to have a chance to let these meds work or not work before he tries much else. If you are worried, you should get a second opinion.
Question 4: I am not being rude or sarcastic - Promise! The only thing that helps me sleep is the sleep aid. Take it, you will sleep! LOL :)
I'm just being direct here Sweet - I want you to feel better. Maybe just see if anything gets relieved, keeping in mind that there is no cure. The doc might at least be able to cure your sleep, rashes, anxiety and a couple of other things. It is slow go!
Let us know what you decide to do!
:) Hugs - Ang/Draginfli
Hi Terri
He is doing better and its a struggle to keep him taking his zoloft everyday. You know how when you start to feel better and don't think you need it anymore? But he's been told by his doctor that you can't just stop taking it, the doc wants to keep him on it for a year and then ween him off of it. My son is also ADD and my daughter is AdHd with a capital H lol. She's as hyper as they come, and can really stress me with her intensity lol.
Thanks for asking Terri, they are great kids, don't do drugs, don't smoke, don't drink and haven't given me any grandkids yet LOL.
Trisha
Tez_20 said:
Hi Trisha,
As i said before i do feel for you with your soon and depression is a major concern because of issues it can cause but i do hope he's picked up a little from when we last spoke.
All my love your way xxxx
Hello Trisha,
With depression you can get a boost from the drug and think your cured and your son may be feeling this way but he does need to take it like the doctor's recommened to him and if he's still better in a year then weening him off is surposed to be what happens....god i've took that many of antidepressants over the years i've lost count but nothing helped me even though they rose the drug on each account as high as i could have them.
Oh bless your Trisha what with your son and extra worry ontop of your own situation...having someone else around you who is definitely hypo is'nt what you need although she's your daughter and need full on attention...i bet you yourself only relax when they're in bed.
Well at least you've done well so fare with all the good behaviour of no addictions what the youngens love today, that's better than nothing mate.
Love you loads Trisha. xxxx