It has become funny to me now that things sometimes get out of order for me - but begin self willed i am not going to let this Lupus stuff get the best of me !!! and neither should you !! smile As for the time length of Life , i've been told and read that there are peole whom has lived for a long time with this , and i've also have a aunt that was a friend to someone who had Lupus and the young lady was born with it and she died in Nov. or Dec. 2011 , my aunt knew her for a very long time and went through tough times that she went through. But she took care of herself and on top of that she was 18 at that moment when she passed ... But i hope that you take care of yourself and do the Heathly things that WE should do for Living with LUPUS have to do , and am going to also ... Beverly L.
Heather said:
wow! I just read the part about having problems holding things & standing for any length of time ...I have just started having this problem over the last three months. like, sometimes I cannot even hold a coffee cup. I thought maybe I was just a reject sle patient cause my Rheumatology Dr doesn't say anything when I told him. I have all these crazy things going on in my body and for the first time since my diagnosis I'm scared. how long do we normally live with this disease? does it eventually kill us or just debilitate us & cause us to be in such pain & misery that we just wish it had killed us? I can't hardly function most days & my rheumatologist says it's impossible to get ssi disability for sle ...in pain worried & giving up hope
definitely know what you are talking about. I FINALLY found a really good rheumatologist and she put me on meloxicam...I know, doesn't sound very fancy but it works well for me. I am also on plaquenil and ssnri (Cymbalta) which helpss a lot w/ pain...also began methotrexate probably a little more than a yr ago? it helps my flares a lot too which of course reduces my pain.
I was just diagnosed with Lupus when I was 60 but in my mind I knew I must have had since 1971. At that time i was having trouble with having children . I have gone through cancer, and will get through this mess. But I dont like gaining weight from the steriods that help me through being swollen like the the Phillsberry Dough man. I have a few problems but luckly I just receiver Disability for Christmas last yeae so I will not have to work so much anymore.
I can't tell you how great it is to read through the discussions here - even though I haven't participated so far (just because of tiredness usually) I am constantly amazed at the similarities in people's experiences. I still get some pain (mostly localised) pain in joints and random stomach pain but it has never been as bad as my initial flare up which had me in tears many nights so it helps me knowing that if I coped with that, I can cope with this. But I coped with it because I had to - not knowing anything about Lupus or what was happening to me. I find it terrible that doctors are withholding pain medication for people who are diagnosed with Lupus and therefore really need it. I struggle with fatigue and brain fog quite a lot (for me both have continued to be a big issue since I was diagnosed) and so talking to a doctor about what's going on is really difficult at times, so to add confrontation about pain medication into the mix, sounds awful. I've started taking notes about my journey (when I remember) just so I can give the doctor specific examples about pain/feeling sick/headaches so forth, and I've found the doctors take me a bit more seriously by doing it.
Hi there AussieJen, Its great that you have been able to come on and participate this time. Yes, the tiredness is such a nuisance to say the least. I have just been through four days of feeling so tired that it affected my mood and my way of thinking about things. I knew i just had to go to bed and sleep for as long as i needed to, otherwise it would only get worse. It was the same for me, the first time i had a massive flare up, the pain was indescribable. I was just lucky that i had changed doctors and finally got a doctor who was listening to what i was saying and knew immediately what was wrong, obviously i still had tests to have, but he acted immediately putting me on high dose steroids and pain meds. It is totally disgusting that adequate pain relief isnt being given to those who need it. They have their reasons i suppose, but it should be if somene is in pain, then their course of action should be to help relieve it, not make someone suffer more because of it. It really upsets me and appalls me that there are some LWL members out there without any meds to help with the pain they are in. It is a good idea to keep a diary of events, and keep a copy so that if a doctor doesnt have time to look at it there and then, then you can pass it over to the doctor if they dont have time there and then to look at it. And also it might be useful as it might show patterns of when the pain is worse etc, which could be helpful as some things might trigger it. I do try and distract myself if i am in pain as much as i can, but of course there are times when this is just not possible. I try and find things like hot water bottles, a tens machine, cold compresses, or anything that might ease the pain a little. Okay its not going to take it away, but anything that helps is a bonus. I just wonder how many people out there are having the same problem regarding pain meds at the moment. Like you say Aussie.Jen, memory comes into it as well, remembering to do all the notes as well when you arent feeling good is not easy. And also if your memory is impaired due to the Lupus then that doesnt help either, i know mine is, they put my poor memory down to the fact i have the Antiphospholipid Syndrome, and have had epilepsy/seizures due to brain involvement. So of course that doesnt help. I make myself notes everywhere for everything now, otherwise things just get forgotten. Anyway bye for now, take care, look after yourself, love and hugs Astrid40xoxo
wow the info on ssi was so helpful. I am gonna call an attorney this week! thanks so much for listening. & not making me feel crazy & being so supportive. my family is as supportive as they can be but they have their own lives & they don’t have this disease so they don’t get it. I feel all alone & like a failure sometimes cause I can’t be the mom, worker, & housekeeper that I feel I should be. I’m embarrassed & admit I feel shameful that I don’t live up to my expectations. I’m supposed to return to work in may & am so scared I won’t physically be able to do it & get fired. & lose my health insurance & house & the pressure is so tremendous. I’m overwhelmed. I am really praying God. give me the strength to change what I can & the wisdom to know the difference. & the trust & discipline to leave it! in His hands & not keep taking it all back onto myself after I’ve asked for His help. Please keep my situation in your prayers. & thank you for all the support. I will continue to keep all of you in my prayers. Thank you doesn’t seem to be enough for the comfort & peace of mind talking to all of you brings me, but. I say. it whole heartedly! !!!
Took the last of my pain meds today. My rheumy appt isnt until the 18. My mom is coming to advocate for me due to the fact that I get really emotional and forget things. I may end up going to the er tomorrow( not sure if they can help) bc I just can’t sit in pain for 16 more days. ;(
Hi there haitianbarbie88, I am sorry you are going to run out of pain meds. I am pleased your mum is coming with you for your appointment. Its always a good idea to take someone with you as we can be abit forgetful to say the least. And as we also can get abit nervous sometimes it helps if someone is there who knows us can remind us of something we might of forgotten. And also they will be able to tell us something that the Rheumy has said that maybe we have either forgotten or didnt catch, as there was so much happening or being said at the time. It does make us very emotional at times, reality kicks in even more once we are actually there waiting for the appointment and more so once we are with the Rheumy. I have lost count of the amount of times where i have burst into tears now when i have been in an appointment. If the Rhuemy is good though, he/she will understand, i am lucky my Rhuemy does, and also tries to help me as much as he can where ever possible. If you are feeling like you need to go to the ER, then go! Dont sit there and suffer. Its disgusting that you have been put in this position, i really feel for you at the moment. I do understand, i have been without pain meds before and its hell. So dont hold back on emotions, cry if you need to, let them see how bad the pain gets. It really upsets me to think of you having to go through this. I will pray for you. I really hope you get the help and the medications you need to relieve some of the pain. I will be thinking of you. If you want to talk i am here for you. I wont go on anymore, i am thinking of you, take care, look after yourself, you will get through this, prayers, love and hugs Astrid40xoxo
Hey Ang! Not exactly… I went to my pcp she told me she doesn’t feel comfortable prescribing me narcotics someone else gave me? But she wanted to change my dose of steroids? Makes no sense. And once I got assertive and kept calling my rheumy she had her nurse call me and say that she will no longer be perscribing me pain meds that it was only supposed to be for short term and that she needs my records from the last er visit to c how it went. Seriously? Since when is lupus pain short term? Ur a Rheumotologist for god sakes. Soooo I’m hoping that once I get to the appt on the 18 and my mom comes she can speak some sense into her and I will be able to get a pain med I can take prophylacticly so I can keep my pain at a steady rate instead of taking a thousand pills once my pain reaches at ten.
draginfli said:
So the deal with the pain meds is that he won’t refill for you to last you until your appointment?
Also - I’m glad your mom is going to go with you - also, it is good to keep notes during the day to take with you.
My primary Doc can no loger write me a prescripton for pain med, my rheumy can't either. Now i have to go a pain center once a month, which i can"t afford. The prescripton is only for 30 days. The reason for this law is because people from other state come to get pains meds to sell on the street. I don't know what the law makers were thinking when decides to do this, It's only hurting the people who really in meds in order to function. asia64
haitianbarbie88 said:
Took the last of my pain meds today. My rheumy appt isnt until the 18. My mom is coming to advocate for me due to the fact that I get really emotional and forget things. I may end up going to the er tomorrow( not sure if they can help) bc I just can't sit in pain for 16 more days. ;(
Its getting harder and harder to get painmeds because the law is crunching down on doctors, treating them like they are drug dealers. The new strict laws don't stop people from taking drugs illegally, they only stop law abiding people in severe pain from getting what they need. Also, I learned that doctors are taught only 3 hours of info in medical school about pain control. Any Dr. who has become a pain specialist, has studied it on his own. They don't even know the difference between dependance and addiction, so they call everyone who is on pain meds "an addict." I have had a lot of stupid things said to me bout pain meds. One said "You've got enough problems without being an addict on top of everything." All the other meds are meant to help you with the pain. As they suppress your immune system, the inflammation is supposed to go away. A lotof lupies are so sesitive to prescriptions. I had to go natural on all meds except painkiller, then I realized the opiates are also natural, they are just tightly controlled.
I was in the E.R this weekend, and I got told that my heart is badly damaged, and probably severe pain was a stressor on my heart. It is dangerous to let pain go untreated. There are tons of damaging side effects from pain, more dangerous than beng dependant on pain meds. I am on mine to save my life, because I have another condition that is considered one of the most painful conditions a human can have, and my heart has stopped from it, so they put me on strong pain meds to prevent that. The laws need to be changed. When I see a drug abuser, steam comes out of my ears, because due to THEM, we can't get what we need!
Now they will have more deaths due to suicides from severe pain, and people like me whose heart is damaged due to the constant stress of severe pain. Those drug abusers who died of overdoses, this new law will not affect that at all, because they will still buy their drugs from drug dealers.
Ann, I posted a discussion about Canadian pain law changes in 2 other groups I belong to that are also NING groups, set up just like this one. It's a good thing you mentioned that you searched and couldn't find anything, because I didn't realize I had not posted it here. So I just now posted it. Here's the link to how the Canadian laws were changed 1 month ago. http://forum.lifewithlupus.org/forum/topics/new-canadian-pain-drug-laws-will-you-be-affected
Since I can’t sleep at all I’ve decided to write back everyone who replied to the post. THE LORD HAS ANSWERED OUR PRAYERS! Thank god! I went to the er yesterday after school around 3 pm. By this time my pain was about a 9. I had all my lupus pain plus I felt like my son had brought me a head cold home from school. Lucky me lol. I was immediately evaluated by a triage nurse and placed in a waiting room. After speaking with a couple more people the np came in. I told her my story about my pain and my dr. Then proceeded to make it known that this was my last resort and if i didnt get help from her id be in the er every day until i saw my rheumy again. She felt bad and told me not to worry that she would take care of me. She gave me her personal evaluation and found out I also have a double ear infection on top of the lupus pain. Also a lot of redness in my throat. Which i now believe is also infected. To make a long story short she gave me pain meds right away and an antibiotic. I stayed for another 20 and was later handed a perscription to 75 pain pills and 10 days of antibiotics. Thank you all for your prayers and strength. Sometimes we get so low that we forget to trust in god and keep our faith. Who would’ve thought the day after my pain meds ended I would get a new script for something even better. I appreciate all of you and I hope I can help you all at some point the way you’ve helped me. xxxxooooooo barbie
Oh HaitianBarbie, thanking the Lord that you got that NP who helped so much, and that you will get some relief also from the antibiotics! There are tines when we hurt so much we can'rt even reason enough to trust God or hear the Holy Spirit, and in this case, its a good thing you DID seek help instead of just trying to tough it out. There's a reason for everything, even though we can't see it until later. I'm so sorry about your double ear infection annd throat infection! Are you onprednisone by chance? you say "from school". Are you a teacher or a student? So glad the NP was so generous with pain meds!
Hi Sheila, This is awful that there are more deaths due to suicides from people who are in severe pain, I can understand that though, especially those who are on their own with it. It makes me again realise just how lucky i am to have a good husband, my little Harald dog and some great friends on LWL who help keep me strong through the tougher times. Anyway hope you are not too bad at the moment, i have been thinking of you, take care, bye for now, love and hugs Astrid40xoxo
Sheila W. said:
Now they will have more deaths due to suicides from severe pain, and people like me whose heart is damaged due to the constant stress of severe pain. Those drug abusers who died of overdoses, this new law will not affect that at all, because they will still buy their drugs from drug dealers.
Hi haitianbarbie88, i am so pleased you managed to get a few things sorted out. Aww, poor you picking up your sons head cold on top of everything else, thats all you need. I am so pleased that nurse listened to you, and got a few things sorted. I am not surprised you were feeling a lot worse on top of everything, as any sort of infection will drag you down even more. The thing is now, its good you have got some antibiotics, The only trouble is they are probably going to make you feel worse before you start to feel better. At least though they will start to clear up whatever the infection is. Do you find you feel worse when you have to take antibiotics? I am so pleased for you though about getting some pain meds, you must feel so relieved and now at least you will perhaps be able to start to feel a little better at least. Anyway hope you get a better nights sleep tonight, take care, bye for now, love and hugs Astrid40xoxo
draginfli said:
Thank GOD and that awesome NP! :)
haitianbarbie88 said:
Since I can't sleep at all I've decided to write back everyone who replied to the post. THE LORD HAS ANSWERED OUR PRAYERS! Thank god! I went to the er yesterday after school around 3 pm. By this time my pain was about a 9. I had all my lupus pain plus I felt like my son had brought me a head cold home from school. Lucky me lol. I was immediately evaluated by a triage nurse and placed in a waiting room. After speaking with a couple more people the np came in. I told her my story about my pain and my dr. Then proceeded to make it known that this was my last resort and if i didnt get help from her id be in the er every day until i saw my rheumy again. She felt bad and told me not to worry that she would take care of me. She gave me her personal evaluation and found out I also have a double ear infection on top of the lupus pain. Also a lot of redness in my throat. Which i now believe is also infected. To make a long story short she gave me pain meds right away and an antibiotic. I stayed for another 20 and was later handed a perscription to 75 pain pills and 10 days of antibiotics. Thank you all for your prayers and strength. Sometimes we get so low that we forget to trust in god and keep our faith. Who would've thought the day after my pain meds ended I would get a new script for something even better. I appreciate all of you and I hope I can help you all at some point the way you've helped me. ;) xxxxooooooo barbie
Astrid thanks for thinking of me. Struggling with chest pain and Trigeminal neuralgia, taking nitro for it, but I will adjust. In every health problem, the symptom that first sent me to the E.R. soon I adjust to and can handle it at home.
I started decreasing my Prednisone 1 mg/mo got down to 3 mg & started having severe back pain, leg heaviness & headache. My B/P went up to 150/80 & HR 103 I have spinal inflammation & have to have IV Prednisone. This is the second time this happened. I also have cardiolipid Ab & take Plavix. My Rheumie put me on 40 mg Prednisone for 5 days. I'm so sick of going up/down on this Prednisone. I also take Cellcept 1,000 mg which is suppose to be a steroid sparing drug. She says this Transverse Myelitis can cause paralysis. I've had spinal taps before that are neg. She says these symptoms are due to lupus flare. This also affects my bladder causing frequent urination. My cortisol level was 2 (normal 6-8), guess my adrenals shut down. i also have diabetes Type II from yrs of high dose Prednisone. Has anyone experienced this with Lupus?
Hi Sheila, Thankyou for letting me know how you are. Thats so scary having chest pain. And the Trigeminal Neuralgia, i know is really painful. I hope it does get a little better for you soon. As i know you and i are very similar in the fact we have to spend so much time just resting. I was only just saying to another LWL friend yesterday that if i didnt have everything laid out exactly how i need it to be, there is no way i would be able to cope. Some might say its clutter, to me its everything where i know it should be and in easy reach, hehe. Anyway enough about me, i am so sorry you are still having so much trouble with everything. I will keep praying for everyone and yourself for some relief from everything. I have been thinking of you as well as others. Take it easy, i have added a book to my page, a comedienne wrote it, who also has Lupus herself, if you are interested. Anyway you take care, look after yourself, bye for now, love and huge hugs Astrid40xoxo
Sheila W. said:
Astrid thanks for thinking of me. Struggling with chest pain and Trigeminal neuralgia, taking nitro for it, but I will adjust. In every health problem, the symptom that first sent me to the E.R. soon I adjust to and can handle it at home.
xxxxooooooo barbie