Does anyone know what would help relieve some of of these when not on steriods or any other lupus medications. I am working on getting under the care of a rheumy but its difficult seeing as I'm still a minor as well as no one can recommend a good doctor around here. I have had enough doctors and know enough about lupus to know that its the cause, yet, none will start treatment. All the doctors i see enjoy playing the lets send you here for a confirmation and it begins the cycle of never ending tests and no treatment for a miserable teenager..... but Ive run out of ideas on how to control some of the symptoms because they keep getting worse.
So I need to ways to relieve:
dizzy spells
migraine
severe upset stomach
chest pain and difficulty breathing
- almost positive its associated with pleurisy
fatigue
joint and muscle pain
If i get some of these under control i can hopefully make it through this flare and see a doctor soon.
Mostly I have been taking anti inflammatory like naproxyn and tylonol but you can only take so much medication before you hit a limit and i prefer not to take my severe pain meds (Tramadol) and attend school. It just is not a good mix
I've also been using heat, ice and trying to rest those help for a short time but not long enough
Any advice would be appreciated,
Im sure you all know what its like to be on the quest to get the care you need and still trying to manage it at the same time.
First of all let me say how sorry I am you are getting the run around. It is not fair and it makes me mad when docs do this...unfortunely, anger makes my Lupus flare...so I am chillin now....whew.
OK,
the things i would start off with are:
try cutting wheat gluten out of your diet. I cannot even begin to express the way this simple thing has done to relieve my pain. Dairy is another culprit. I was having horrible belly issues and internal bleeding===all due to dairy.
Also, Tiger Balm is great for relieving pain (it won't help everything, but even a little helps when you are desperate, right)
you can get it by the icy hot.
I have had great luck with EMDR treatments...I see a counsler who helps me with them. I don't like the light version, but the tones and pulses are amazingly effective for me. There are a few things on line for emdr but I have not had time to check them out.
And find several ways to relax and de stress---esp if you are a student (people don't always realize how much pressure there is on young people these days...idk how you guys cope and I pray for you every day.) Do breathing exercises, do drink enough water, do listen to music that makes you feel happy, do art! paint draw color sculpt knit crochet macrame sing dance act...art is awesome for your health.
And last but not least, stay in touch with us on lwl! we got your back.
Tell me about it try being a senior in high school and dealing with this for 5 years with no relief!
ok Well i am a little stressed but alot of it is from the pain i use active on cuz icy hot is evil to me and
i don't have dairy because im lactose intolerant so that ones out of the equation
How does gluten affect it and what is tiger balm? ive never heard of it
I appreciate the input and also remember im not able to get to someone to help me with anything like the emdr stuff so anything i do atm has to be able to be done on your own
Tiger balm is a little like icy hot so it may not be good for you. it has camphor and menthol and stuff in it.
emdr is actually very simple. It was "discovered" by a woman out walking her dogs. she noticed that as she walked along trying to figure out some stressful stuff her eyes moved from one light pole on one side of the street and then to the other--back and forth like that and that it seemed to make it easier for her to process stuff. Basically emdr just helps us move info from one part of the brain to the other and back and forth and all around...so that we have more "workers" solving problems and integrating info.
another way to engage your amazing brain is by doing the same kind of brain switching through journaling. if you go to journalingcompanion.webs.com you will see that I have a whole bunch of different journal pages designed to give you comfort and help with many different things--and if you want to share what you find when you work with the pages i am happy to listen---
Gluten was a big surprise for me---i never in my life thought food would make such a difference, but if I eat gluten my pain is so intense that even with pain meds I jst cry. Without gluten i don't even have to take pain meds on most days.
I will keep looking for free stuff to do while you wait for insurance...maybe we will stumble upon something even better than the trunk load of meds they will probably put you on once you do see a doc...
I am sorry to hear you are going through this with the doctors. I agree with cutting the gluten and dairy. A Naturopath may be able to help you - call a few and see if they have experience with autoimmune diseases.
I know it is hard to do but you have to pace yourself, take rests and naps throughout the day.
When you go to your appointments bring a man, preferably and older one - your dad maybe? It is not right but I have found that they listen to men more than women. Explain the situation to your dad or whoever you can get to go with you and ask them to be your advocate. Ask them to speak up, ask questions and demand that you get some treatment.
Im trying to watch what i eat and rest as much as i can
but it feels so hopeless i getup and go to school just to have my teachers ask me multiple times an hr do i need to go to the nurse because there's no color in my face
Yesterday was bad because i litterly told my mom i give up screw school im done getting up in the morning
im going in late today because the headache and dizzy spells and fatigue are so extreme today i can barely get out of bed it took me 15 mins to get up and walk to my clean clothes pile because i haven't had the energy to put them away yet and pick out what to wear today. i didn't even get dressed i pretty much went back to sleep on the floor and then my mom came to check on me and told me i could lay down for a while longer
She ran to go get excedrin migrane to see if that will help rather then the 500 mg of naproxyn and 2 650 mgs of tylonol ive been taking just to get it under control enough to go to school
How do you guys get up even when you don't have the energy to? Im all but ready to give up this round because i feel like i can't win and its taking over everything and im getting depressed and as my mom said miserable because i can't fight it i can't get any relief and i feel useless and like a burden to my mom :(
Sorry going on a rant im so fed up with this though
aww man I am so sorry! It is horrible what you are going through. Have you thought about home school maybe? that way you can rest as needed and work when you are able. ? My son was home schooled...actually through an online school. then he graduated early and went to college.
Well whatever my mom gave me helped cuz theyve calmed down i kinda feel in a fog but its way better than how i was an hr ago
she got me Excedrin migraine and some stuff that helps nausea and dizzyness so i'll take that and its not as much of an OD on anti inflammatory medication
I think Homeschool would be a little pointless because im a sr in hs with only 4 credits remaining to graduate
were moving shortly and my current school is on a trimester while my other school im going back to is on semesters and im not going back till the semester change so i wont finish the classes here in second trimester and get the credit so id have to restart them from the beginning so i may be able to take 2 months off when my flares are worse
Winter is the worse for me especially during the changing time from fall into winter or winter into spring
Im trying so hard and my moms doing everything she can to make it easier on me at least the classes im taking now have no effect on my diploma their all electives and i have plenty
a little better took one of the dizzy meds mom got me and fell back asleep untill it kicked in to i wasn't to dizzy today and its helping with my stomach as well so that's a plus
ive been pretty tired today though so ive been napping off and on and things are a little less stressful now that we know when were moving where were moving and what im doing with school because of it
I am new to this group, but I have been through many of the things you are talking about and I can tell you about my experiences. When I was on Tramadol, I took it at night so I could sleep and so I wouldn't be so out of it. I was still foggy, but not completely out of it. Also anti-inflamatories are hard on your stomach, for many years I had to self-medicate because I didn't have any insurance. At this time I had to work and I couldn't even get started without 2 800mg of Motrin in the morning and 2 more at noon and then 2 more before bed. I ruined my stomach doing this. Please eat something when taking these pills, they come with serious consequences. This could be why your stomach hurts. Have you ever heard of Bio-feedback? Do some research and see if you think this might be something that might help you. I don't know what kind of tylenol that you take, but Tylenol Arthritis works surprisingly well and it might help you eliminate your naproxen. Try a moist heat heating pad on low for your pluersy and try a table top humidifier for the winter months as dry air aggrevates these symptoms. Also try to keep your room cool at night as you will sleep more peacefully than if the room is hot. Before mixing any medications, it is always wise to call a pharmacist, such as a 24 hour Walgreens or something and ask if it is ok. The last thing you need is to deal with complications from mixing meds. I hope this brings some relief for you. I had have been dealing with pain since I was 18. I am now 49. I had back surgery for degenerative disc disease and had many years of terrible pain. One piece of advice that I can pass on to you is try very hard not to take strong meds unless it is absolutley necessary, as you will need them down the road as you get older.
Thanks for your advice its nice to have people i can talk to that can relate
mom tries but she can't fully understand
the tramadol i only take if i really need it usually i try naproxyn and tylonol first n if they don't help its a last resort i take the arthritis thats why its 650 mg i usually take it after ive eaten something in the morning or at lunch
i will give the heating pad a shot never thought i would help with my pleurisy as for mixing meds my mom controls all that she checks with pharmcists before she tells me its ok to take what at the same time and if i decide i dont like how i feel when they are mixed then we space them out to keep me functionable at school
its hard to deal with it all tonight im dealing with i wish i could say im feeling better because my flare was calming down not because im taking stuff to make it all go away but i know if i dont take it within a certain time of getting into pain or dizzy then i get in so much more pain i wish it didn't have to be like this at my age n i wish it would go away like deleting a program from a computer
dear lupus i don't like you so your being delete from my system because i said so :P no you may not return
another thing about the tramadol is i take it and it makes me really awake for a while when its first kicking in and then after a few hrs is when it makes me tired
I wish we could could delete it too. But if you are like many of us here you will discover that even though Lupus sucks (because it does)--even though it sucks, there is a gift hidden in it. Hidden inside all this suffering is something very precious that will break your heart with its tenderness. Once you discover the gift you will not be sorry, but grateful for the way this gift is yours, all yours, no other like it in the world. It is not easy to find the gift so don't try to find it all at once. It is too big to get your head around in one try. Instead, begin to look for little clues. When something touches your heart, something moves you to tenderness, feel it. Notice it. And then let it go. Don't worry, it isn't going away but is only making more room for your gift to be what it will be in the world. A heart that has been broken by tenderness is the heart of a person who grows up to make a difference in the lives of people (and animals:- I have to include the beasties)
I can already tell that you are going to be one of those people because you are sharing your honest feelings and you have a strong spirit. Maybe one of the things you can use to deal with the pain is this: When you are in a small or moderate amount of pain, talk to it. (you don't have to do this out loud) Say something like, "What are you trying to tell me?" Try to embrace it the way you would embrace a little baby that got hurt, a baby you were then trying to comfort by finding out what's wrong. Rest with it. soothe it with calm breathing.
Sometimes that helps me. And I usually learn something that pays off. Don't try it if the pain is too intense--
anyway, i am glad you have found a little relief and I will keep praying for you!
when the pain gets so bad that it keeps me awake i usually take pain meds. Is there any way your doctor can give you something stronger than over the counter meds? another thing to try might be a bath with Epsom salts and bath oils. I hope you are able to rest today and feel better. Keep writing!