Hi everyone. Sorry for the long post but I thought I should give some background so any ideas you all have to offer for any pain relief techniques or any ideas to help me get any amount of sleep would be greatly appreciated. I am a nurse so working on minimal (1-2 hours) to no sleep isn't exactly working out that well.
I started having my first symptoms of Lupus at 11 but of course it was pushed to a different diagnosis even though I have two immediate family members (my mom and my uncle) who have been diagnosed with Lupus. They never even considered the possibility.
For me it started in my knees. They would ache so bad to the point I wouldn't even sleep at night, and then have to go to school in the morning. First they told me I had growing pains. I was persistent and continued to complain that the aches were more than just growing pains. Then my family dr sent me to a sports medicine specialist who told me I had patella femoral syndrome which is when your muscles grow faster than your bones, since by this point my knees were popping out of place as well as aching so badly I could barely walk. I learned to live with these continuing problems and gave up on dr's all together. Finally at 18 an ortho surgeon operated and fixed the years of damage in my one knee (from continunally popping out of place) with two separate surgeries and besides the constant aching the popping has now stopped. The other knee we were able to fix for the time being with years of intense physio. When I had surgery I broke out in what I now suspect to be the typical lupus type rash all over most of my face, upper body and arms. It was red, raised and itchy and appeared about 3 days after surgery.
I should mention that during my high school years I did also start to have some aching in my hands as well but it was only sometimes so I didn't think much of it as well as high school was when my migraines started.
My second symptom flare up that was missed was when I was 18. I had just moved from home to start college and developed what I thought was tonsolitits. I saw a dr and took antiobiotics for the required 7 days. I ended up continuing to be sick with a fever, runny nose, flu-like symptoms for approx 6 months this time. Finally one day I was having such a hard time breathing one of my room mates took my to the ER. Along with the difficulty breathing I also had this red, inflamed looking rash all over both my hands and forearms. My hands were so swollen I couldnt even interlock my fingers. After 6 months they diagnosed me with asthma because of my decreased air entry to my lungs and difficulty breathing. Since being diagnosed I have noticed the only time I have trouble breathing is when it is -30 degrees celcius outside or when I am around contained cigarette smoke. I find most people who are not around either of these circumstances on a regular basis have trouble breathing in both situations as well though so I'm not convinced this is asthma anymore. I only take an inhaler on an as needed basis and can't even say the last time I have taken it. At this time my ANA was tested and it came back negative. I gave in to some advice and saw a natropath as I was at the end of my rope and was told I had Lupus so its always been in the back of my mind.
Over the next couple of years my aching body became more pronounced and worse. I found daily tasks harder to do and noticed that my migraines became worse and I started to get them more often.
This most recent flare strikes me as the most frustrating. About 2, almost 2 and a half months ago I started feeling flu-like. I am a nurse in an acute care hospital so I assumed I had caught the flu that was going around from one of our patients. I didn't think much of it and tried to recuperate over my 2 days off. I felt nauseated and started aching all over my whole body as well as getting a headache. I noticed that my hair was falling out significantly more than usual. One evening my husband and I were going out with friends so I went to get dressed in some jeans I hadn't worn in awhile and I could pull them on and off without undoing them. I had noticed some weight loss but it's hard to judge in scrubs all the time. The next shift I was on I weighed myself and noted I had lost 17 pounds in the 3 weeks since this had all started. Since then my aching has gotten significantly worse to the point where I have days I can barely get out of bed, or even roll over. I can barely hold a brush to brush my own hair or my teeth or hold my dogs leashes to take them outside. And that doesnt even cover the extreme fatigue, plus I work full time night shift and can't sleep most of the time because I am in too much pain. I also have the "butterfly" rash and this itchy skin that drives me crazy. As well, just in the last few days I have started to get intermittent fevers as well as newly developed chest pain. The pain normally develops at rest and sometimes feels like heart burn but can range to the extreme of feeling like I am being stabbed in the chest as well as having a constricting throat. During these times I am short of breath and find I cannot take a full deep breath because it hurts too much. As well it is uncomfortable to lay down except for on my left side. The first time I experienced the chest pain it lasted 4 days straight. I went to my dr and he prescribed Prednisone 50 mg once a day for 7 days. I am finding it doesn't help even for an hour or two. Seems it was a complete waste of my time. I know stress is a factor that can affect autoimmune diseases as well but it is really difficult to shut the nursing side of my brain up to all these symptoms and not get worked up, although I am trying along with support from my wonderful husband. The last two months has been unbearable. I saw my dr and told him my symptoms. He sent the blood work in and my ANA came back positive, as well I found out I have very low iron which is most likely due to lupus since I have never had an issue before. I had to have some more blood work done and am waiting the 6-8 weeks for the results. After that as long as its positive (and based on my symptoms and the positive ANA there is about a 97% chance from what I have researched) I will be seeing a rheumatologist. As much as I don't want to live with this disease I would rather know what is wrong and deal with it. Dealing with this is hard enough nevermind that but I have become fairly isolated because I have no energy for anything. I work, I sleep, I eat, and I spend time at home with my husband because I have no energy left for anything else. If I do get a spurt of energy I try to reconnect with my friends because I am usually a very sociable person but this has really taken a toll on me.
If anyone has any suggestions on things I can try for pain relief or to help me sleep that would be greatly appreciated. Sorry if my story is a little jumbled or mixed around, I worked last night and only managed to sleep about 4 hours all day and am back at work all night again today. :S topped off with a migraine! Thanks ahead of time.
I'm sorry you're having such a rough time. I also have lupus, as well as fibro and severe arthritis, so I can definitely relate to the not being able to sleep, either because of the disease/condition or because of pain.
First thing I would suggest is to not wait until you get your bloodwork results back before getting an appointment with a rheumy. Based on your symptoms and positive ANA alone, that is reason enough to seek the help of a rheumatologist. And, unfortunately, getting an appointment with one can sometimes take a while, so I feel you're best off making an appointment NOW. If you can get in to see them before your bloodwork comes back - GREAT - if not, then at least you will already have the appointment set up for whenever the blood tests do come back and not have to wait on the bloodwork and then wait again on the rheumy appointment.
Other than the short 7 day round of prednisone, what other meds/treatments have you tried? I know, for me, when I'm in a flare, 7 days of prednisone also does not doo much at all - I require a longer course of it - usually at least a month - to get things under good control and also allow for an appropriate taper. So it's possible that the prednisone actually may work, but you weren't on it long enough (or perhaps not a high enough dose. My doctor typically starts me off with 60mg a day for several days, then starts tapering me down slowly. Of course, that could very well just be my body - I've had to be on prednisone so many times in my life - not only for the lupus but also for my asthma and arthritis - that it probably takes higher doses to make any difference in me and I know for a fact that it takes me longer to wean down than "the average" person. Just to give you an idea of how much I've been on in the past - at one point, due to my asthma, I was on 120 mg a day - for over a year!! Fortunately (thank goodness), I've not had to be on THAT high a dose in several years, but for me, it usually does take a higher dose to help than some others.
Are you taking anything for pain or sleep now? I know being a nurse, it might be difficult for you to take certain medications, especially when you're working. If nothing else, you may want to consider giving some kind of sleep aid a try - whether it be something like benadryl, melatonin or a prescription sleep aid. I, myself, take Ambien. While there are some nights that even the Ambien doesn't help much, my sleep is definitely much worse when I don't take it (not just rebound insomnia) - so I do know it's helping.
I've been on Imuran in the past for the lupus, which really did nothing for me, and have tried some other meds - the most recent one being Cytoxan (this was still about 3 years ago). The Cytoxan actually did pretty well - was improving my symptoms as well as my bloodwork. However, I then developed severe bladder problems and was taken off of it as Cytoxan has been shown to sometimes cause bladder cancer. Unfortunately, right after this, I also had to leave my rheumatologist because she no longer accepts Medicare and I simply cannot afford to pay cash for my appointments. I have a great primary care doctor who has taken over all my care, but obviously, she is not a rheumtologist. At this point, because of the reactions (or lack of help) that I've had from so many different meds, we are simply treating my symptoms as opposed to having me on a disease-modifying med.
As I said, I know with you being a nurse, there are probably some meds, especially pain meds, that you cannot take while working. However, is it possible that you could maybe get a script from your doctor for some pain meds that you can have on hand for even at night or your days off if you need it? While a sleep aid may help you sleep on nights when you're not in a ton of pain, from my experience, if I'm in severe pain, it doesn't matter WHAT type of sleep aid I take, it's not going to do much because of the pain I'm in. And at least for me, it's a vicious cycle - I'm not sleep well or much because I am in pain and my pain increases because I am not sleeping.
Some non-medicinal things you could try for pain relief, which also may help you sleep would be a warm shower or bath (not too hot and not too cold - extremes either way in temps can make you hurt worse). This may help at any time of day, but if you try it before bed, it may also help you relax enough that you're able to doze off. Sometimes I also like to listen to soothing music (mostly classical) when I'm in pain - while the music itself doesn't do anything for the pain, it does sometimes help me relax enough until my pain meds can kick in. I also LOVE my heating pad!!! Mine is one that goes into the microwave and can either be a heating pad or freeze it for an ice pack. Mine is pretty much always at hand. Of course the heating pad doesn't help for that all-over pain, but if you've got an area that is especially painful, such as your lower back, it can add some more direct heat to that particular area.
I hope you get some relief soon. Please feel free to message me at any time if you'd like to talk more or if maybe I can answer any other questions. While I'm not a nurse or doctor or in the medical field at all, I do have first hand experience of what's going on in our bodies, so I still might possibly be able to help - would be more than happy to try anyway :)
Thanks for the response, I added you to my friends list as well. Unfortunately here in Canada we don't have the option of just making an appt with a rheumatologist. I have to be referred by my primary phyisician who at this point I am not overly impressed with. He says that in order to even be seen my a rheumatologist we have to wait on the other blood work to come back. I hear what you are saying in getting an appt sooner rather than later to decrease the wait times which I think is a better idea as well but my doctor doesn't seem to be all for it.
I am on my last day of the prednisone tomorrow and have found that it has given me minimal to no relief so it seems it was basically a waste of time. Otherwise I have just tried OTC remedies such as Aleve or Motrin. You're absolutely right in that I am very limted to what I can take due to my job so unfortunately most pain medications are out of the question due to the fact that they make you drowsy and such. I don't need any encouragement for exhaustion! I have tried taking gravol to sleep which usually puts me right to sleep (I react strongly to meds usually) but even that isn't working, and I do have some imovane from an rx awhile ago and that doesn't work either. It seems you are right that when I am in so much pain nothing to help me sleep seems to make a difference. Otherwise my doctor doesn't seem to think that working on no sleep and being overly exhausted is an issue I guess. Considering he didn't even check my oxygen or listen to my lungs when I told him I was short of breath when I started developing this chest pain I've had for a week I don't know why this suprises me. It's frustrating because he is usually really good but last week he just seemed rushed and bothered by my concerns.
I do take warm baths, and my husband is great for back rubs and such but otherwise I just try the relaxation techniques I teach to my patients and apply them to myself. It just seems that nothing is really making a difference. I realize that until I see a rheumatologist and begin a medication regimen that's most likely not going to change. I just need to have some sort of relief. I know my mom takes Plaquenil but I'm not sure of the dose every day and has been for years. She was in really rough shape for awhile. She had to have a pericardial window put in when she was 6 months pregnant with my youngest sister. As well as another surgery to drain 4 litres of fluid off her heart because it was failing. Pretty scary situation. She was on many different meds in the hospital at that time, I can't recall as I was just a kid then but has remained on Plaquenil now and been in remission for 15 years. Her flares are still pretty severe though.
All of this is so frustrating! Add on top of it all that my husband and I were wanting to start a family but now that has been put on hold to because we are worried with me being unwell of what consequences that may hold. Anyways, thanks for the advice and support. It's nice to not feel so alone with everything that is going on. I hate feeling like my body is it's own enemy.
I'm sorry I couldn't have been of more help. I didn't realize you were in Canada, so yes, there are some differences in how things are done/what you need to do. Here in "the states", we do also sometimes require a referral to any type of specialist such as a rheumatologist, but other doctors are willing to take on new patients without them.
I know it's also difficult to find ANY doctor in Canada without waiting for a long time, but is it possible at all for you to find a new primary care doctor since you're not impressed or happy with the care you've been receiving from him lately? If that is a possibility, you may want to try that - I know you'lll still have to wait on the testing to come back to go to teh rheumy, but if you're able to maybe find a primary doc that is willing to at least give some other things a try (besides the prednisone) while you're waiting, that might help. I'm not real, real familiar with the healthcare system in Canada (I have an aunt/uncle and cousins who live in Canada and my paternal grandparents did for a while also, so am a little bit, but not a lot) - so don't even know if this is a possibilty.
Do you feel that the prednisone's minimal help was enough to be willing to give it a try for a longer period of time? As I stated with me, I typically need to be on it longer than a week for me to have any help from it at all. You may be the same way, so if you're willing (and your doc is willing) to give it another try for at least another week or so, you may end up finding that it does help some. One bit of warning, though, if you're like me with the prednisone, it does make my sleeping ability (or lack thereof) even worse, so that may be a definitely side effect to consider. Whenever I'm on prednisone I can literally go at least two nights without sleeping - it's horrible!! But the "good" effects that it gives me far outweigh that, so I do take it when I have to.
I'm sorry to hear that your mom has had such a rough time. I'm glad that the Plaequenil seems to be helping her (I think I'm going to mention that to my doc - Plaquenil is one med I haven't tried)
It's a shame that you and your hubby need to put the start of your family on hold, but I think it's probably a smart decision for right now. Getting you to feel better and get things under control are top priority right now. Pregnancy takes enough toll on your body, you certainly want to be feeling as good as you can before you get pregnant!
I think your last sentence touched me the most and really hit the nail on the head as to how I feel most of the time - I HATE feeling like my body is it's own enemy also. It gets so frustration sometimes, especially when I try to do things that even just a year ago I was able to do and now I can't. I often wonder why my body feels like it has to fight against itself.
Anyway - I just wanted you to know that you're not alone and if you ever need/want to talk to anyone, please feel free to message me. I may not be able to provide adequate answers or help with the medical stuff, but I most certainly can provide moral support from someone who is also going through the same stuff.
By the way - did your doc give you any idea how long after the test results come in before you would be able to see the rheumy? If it's going to be a long time (say 6 months or more), would your primary doc be willing/able to start some trial and error with meds to see what might work? Again - I'm not sure how the Canadian healthcare system works.
You definately hit it right on there that it is hard to find any doctor in Canada without a long wait thats for sure! I live in a city with a population of about 80,000 right now and we have I think 2 physicians that I am aware of that are taking new patients so my options for a new primary are pretty limited as well. It is something that I am looking into though. Basically in Canada, we have to see our primary physician and have as many tests run by them before they will even send us on to a specialist of any sort. They want to "cover their bases" so to speak. I guess it does cover alot of ground work once you get to the specialist but its the getting there that is the issue. For example, in my situation I am waiting on blood work that will take on average 6-8 weeks to come back with results. I am at 3 weeks tomorrow only. So say at the least it takes 6 and when it does come back it shows positive for lupus so my doc can finally refer me to a rheumatologist. Well now we are looking at most likely 6 months to even get an appointment. *sigh* In reality, by the time you try different medications and dosages to adjust and see what works for you and your specific situation I'm looking at at least a year before I am even remotely stabilized. I know it seems Canada has a great health care system, and in the way that we have alot of things covered and paid for we do, but waiting wise we don't. Don't get my wrong I'm not trying to be negative here either, just realistic. I work in the system so I know how the system works unfortunately.
As far as the prednisone goes, I really didn't feel it did anything except make me hungry which I guess is okay considering the dramatic weight loss I've had in the last few months but it's not something I want to keep up either. My doc said it should give me more energy and help that way but I didn't find it helped at all. Maybe I needed a stronger dose for a longer period of time? He really doesn't seem to be willing to go down that road and said that prenisone isn't something you want to use long term unless absolutely necessary. I understand that but I would say that these circumstances are getting to be pretty necessary. I think this week since Sunday night I have slept about 15 hours. 15 hours in 5 days is not nearly enough.
I am so frustrated with everything. Its hard to keep up with everyday tasks and working and managing the stress or trying not to be stressed and overwhelmed with what is going on. I am trying to find a new job that has daytime hours in hopes that maybe having a regular sleep-wake schedule might promote a bit more solid sleep schedule. I am just running out of options and don't know what else to do. I know stress is a huge factor so I do try and avoid it as much as possible but it seems that it is around every corner I turn.
Thanks for the support I appreciate it. It definately is a frustrating disease. As much as I don't want to live with it I hope these blood results come back positive so I can just get on with some treatment and start feeling better. The doc didn't say for sure how long it would take to see a rheumatologist but by my estimate I would guess around 4-6 months or so unless something drastically goes wrong before then. He basically just keeps saying well we will just wait and see what happens with the blood work then go from there. It just doesnt feel like a good neough answer.
I have SLE and for many years tried a more holistic approach to my care. However, it never worked. BUT… here are the things I do that makes me feel better when I need relief and want to try something more natural before I reach for my meds suitcase.
1-Jaccuzi/Spa for a half hour prior to bed. This way my entire body is submersed. I find it helps with sleep and pain
2-I also went to a Hypnotist and had a tape done just for me that helps me deal with pain and sleep specifically on this tape. I sleep better/longer and pain seems to be a second thought in most cases
3-Melatonin and Valerian help as does…warm milk. Funny as that sounds, it works for me
There are those days when none of the above works and with that I use what my Rheumatologist has prescribed. I have a great Dr. in San Diego. I live in Phoenix and fly to see him on a regular basis. There are NO good Dr’s here. I think a good Dr. is the key for great care.
Good luck and I hope you find relief. Aloha from AZ
Thanks for the reply AZMom. I to take warm baths reguarly but like you sometimes it helps and sometimes it's just too bad of a day. I never thought of a hypnotist but that is something I will keep in mind. And melatonin is a great idea as well. Sometimes it seems when you are trying so hard to think of these things on your own you don't even think of some of the common ones.
How long ago were you diagnosed with SLE? Thats too bad you have to travel to far for a good Dr but I agree I think a good Dr makes a world of difference. I am still waiting on my blood work...2-4 more weeks to go :S...then my family Dr can send me to a rheumatologist. My mom has SLE (you may have seen that above) and her brother has DLE. They see the same rheumatologist in a city about 2.5 hours from me so its a pretty reasonable drive. The Dr they see seems to be good and was the head of Lupus research back when my mom was diagnosed and there wasn't too much information about Lupus around. Hopefully I will be able to see him as well, but if not there are about a dozen other docs in the same office as him and even more in the city.
Do you take regular meds prescribed by the rheumatologist? I know both my mom and uncle take plaquenil 50 mg (I'm pretty sure its 50 mg) once a day as a maintenance dose.
Thanks for the advice :) Take care, hopefully its warmer there than here, we are supposed to get snow again in a few days! The weather is definately a killer for my aches and pains!
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