Just popped in to say hi!

Hey all, it's me Nate! I've been reading and lurking but have not had a whole lot to post about lately except maybe pain issues. My lupus is calm but Im on 10mg Prednisone still, and not sure when I will or if I will be able to taper down without getting ill. I'm getting pushed to go off Narcotics, but that scares me so much. I am in so much pain at times that I am writhing, it is just all over and lingers and pulls and pulses deep in all my muscles. Drives me crazy sometimes. Im hoping to try other stuff to control the pain, but I don't have a lot of hope for controlling my pain without narcotics. Unless I simply grit and bear it, and it is currently so bad at times I cannot possibly do that without missing work frequently and I wouldn't be able to do the liftin and mechanical movements I do as a nurse.

So, hope to catch up with you all. I shortened my username, btw if you all notice lol. gotta work on putting up a picture, I'll do that soon. I got a cute one of me holding my puppies.

Nate

Nice to hear from you, Nate! I don't have a lot of advice about the drugs...still looking for the wonder drugs myself. How can you function on all of that?

I actually can barely function without it. I'm more drowsy and cloudy and hurting without the pain medication. Call it dependence or whatever, but I feel safer when my pain is controlled, rather than the opposite. It's a lot of narcotics, but my body is used to it and has a high tolerance. I want to get off of them soon though, I'm tired of it, but I'm scared of how nuch pain I'll be in and if I'll beable to do my job without pain control. My current pain doctor turned into an a-hole. He won't even write a note to my work expressing itd be good if I used some eletronic documenting so my wrist wouldn't hurt so much when I document from writing so much. Can you believe that? He just says no to everything. What harm would it do? He told me awhile back I may need surgery on my wrists if the issues continue...and now he won't even write a note to ease my pain in a non-medical, simple way as that. I'm switching, I don't trust him anymore. A doctor that says no to anything and everything has their own agenda, instead of listening to the patient. Sad. I can only imagine what kind of person he is inside. Even my dad got a bad vibe off him, and my mom. Oh well. I'm not the first person to have a problem doctor that forgot they become doctors to help patients.
It's ironic...I came to him yesterday asking for a plan to get off narcotics, and then he refuses to help provide ways to handle pain non-medicinally. Frustrating. Least I have a good rheumatologist.

I hear ya about the drugs - functioning better on them than not. I think I hit my limit though and can't take any more without being comatose. I don't know how you do it on all of the controlled substances.

I think it's a matter of whatthe reason behind your pain is. And I think it's simply like any other medication, side-effects get less and less as it is used longer. And my dad recently asked me about my functioning on the medications. And I thought about this for awhile and then realized I am least functional and feel the most hazed/cloudy/dangerous when I am not taking my pain medication because I have the most trouble functioning day to day activities in the morning and in the evening and my days off because that is when I am not taking my or have not been taking my pain medication because I am saving it for when I have to work. And when I do have to work I usaully take my pain medication around the clock until the evening and I am the most functional when I am on my pain meds because my pain is not consumning my body. I can handle my medication, drive, get dressed, do hobbies, research, cook, do groceries, assess and realize illness in my clients, handle my clients, do my own taxes, etc etc etc only when my pain is under control. If I do not treat my pain, and simply rest and not take pain meds I can only make by with laying down and resting and watching TV. I even struggle to use the laptop at this point.

So it is quite the opposite. And I think people have it embedded in their heads that if a person is on narcotics that must be less functional. And this seems simply because of addicts and abusers and people who get high off narcotics. Pain is only recently being treated liek a disease by a few doctors. And I think until pain is better researched and accepted as a legitimate disease will newer treatments come around. I mean it is quite nearly exactly like Lupus and even Obesity. Think about how obseity used to be viewed, and then think about how it slowly become a diagnosed disease and how research boomed and new treatments cropped up everywhere. Before it was siomply "being lazy and your own fault."

Even Lupus used to be said to be made up, non existant. And until people with the disease advocated and got it researched is new treatment now coming out. And is it becoming a legimate diagnosis. Why is pain any different? Just because narcotics have a stigma attached to them? Do I not deserve help and compassion just like anyone else with Lupus or Obesity? Or people with headaches, eating disorders, mental disorders?

And I mean I'm not just making things up, these are things my rheuma has told me, pain specialists have told me. I can only type this message because I took some pain medication, otherwise I wouldnt be able to type and form these tboughts as well. I'd get tired in the middle of it, or give up because it gets tiring.

One other thing my doctor told me was about functional MRIs and people with fibromyalgia and pain syndromes. He told me that peolpe tbhat have these pain issues can simply be toucbed with light pressure, and they can watch their pain receptors and pathways, pain center in the brain light when there is no reason for these things to be occuring in the body, but they do! You can't just tell a hug to stop hurting, tell your nerve receptors to stop firing.

So...that is my ramble I guess...anyone can disagree or agree.

Nate

I'm not disagreeing with you at all. I just know that what I'm going through. Ever since I added Lyrica, I'm a bit dazed and hung over. I'm sleeping in and not getting to work on time. It is working and I do feel better, but also feel off-kilter. This isn't a good balance for me and I'm hoping the side effects fade in time because functioning at work is difficult.

I didnt think you were, was just answering, and Ive been talking about that subject lately, so I had a lot of preformed thoughts I could put down lol. Lyrica helped me also, I hope more meds like it come out. Im actually thinking of coming off the patch now and staying on PRN oxycodone only now. In a way it may work better, I don't know. If not I could always go back I guess.

Lyrica is helping, but I forgot where I was today (driving to the store). I'm only taking between 50 and 100 mg's a day. Not liking this side effect.

Nate and Sandi,

I'm reading through your chains of emails, and I'm curious do you remember what were your first signs of Lupus. In hind sight do you remember when or how it started?

michel

I remember exactly how it started. I had serum sickness from Rituxan. I was fine before serum sickness, afterwards, I never felt the same. It started with horrible muscle stiffness and pain. I thought I just wasn't recovering from serum sickness, but it just went on and on. Then I started to feel flu like a few days every few weeks. I went on that way for about a year before I went to a Rheumatologist. Even then, it was another two years before I met the criteria for Lupus (in labs). I think I knew it was coming. I was stupid though and went tanning for a few weeks. It wasn't long after that when my labs started showing the antibodies. Oh well, I was headed that way any how.

I never had the typical hair loss, malar rash and other physical symptoms, still don't. I have had symmetrical joint pain that is common and of course, the fatigue and brain fog.

Why?

thanks for your input Sandi.

To answer your question, there are a couple of reasons. However the most personal one is that I think that I have the gene for it. Apparently, I've taken after my grandmother who has the high cholesterol, the purpura, she has also had fybromyalgia, non-hodgkins lymphoma just to name a few disorders. So far we share the high cholesterol and ITP. When I was diagnosed with ITP they also tested me for Lupus, but I only had 4 markers because it was summer and the weather was nice it did not include the poor circulation to fingers and toes. During the winter months my fingers and toes turn purple. I'm constantly running hot water over my hands just to defrost them. I'm not in any pain at the moment, however I'm fighting a cold and I feel tired and have body aches. This along with Nate's post got me thinking of how does Lupus start. In the past I've also had excema along my legs, arms and face. But that too went away, similar to my grandmother's disorders.


Michel

I first had ITP issues in 2005 with my platelets dropping down to nothing, got treated with Rituxan as an experimental option, and it put me in remission, then while a lot of things happened in between, I was diagnosed with Lupus in 2007. So my first real symptom could have been ITP back in 2005. But my Lupus is under control ever since I did double duty and got Rituxan again in April 2009 and November 2009. I actually want it again now...but I dont think I could talk my doctor into it.

Your pathway Michel sounds similar to mine actually...from ITP and Raynauds, to feeling like I had a cold/flu all the time, then I started getting swelling in my face/hands, and weightloss and hairloss, and food intolerance. Then when I basically could not get out of my bed my parents rushed me to the hospital. And my hospital thought I was septic and could die, but it ended up being Lupus. Back in 2005 with my ITP, I was tested for Lupus and my hema told me no I didnt have it.

Nate, when you say hairloss what do you mean, are you bald? I lose a lot of hair but I'm not bald. I think it's normal to lose hair, I've read about 100 per day. I probably lose more than that, but I blame my nutrion or hair products. To what degree is hairloss a sign of lupus?

That's a tough question because Lupus hair loss comes in different forms. Some people lose patches, some just have an abnormal amount of hair loss. I find a few on my hands when I wash my hair and I don't consider that a problem at all. If you are finding it on your pillow or a lot in the shower, I'd say it's a possible problem. I wouldn't blame hair products unless you are really abusing your hair with dyes and sprays. As for nutrition, what do you mean?

By nutrition I mean, when I eat my meals are healthy, lean, reasonable portions. I'd say that they are probably well balanced, veggies, some carbs and some meat, very little fat. Most of the fat I consume comes from dark chocolate. But for my activity level I'm probably under the vitamin/mireral requirements that my body needs.

I'm an type A personality I've skipped meals or grabbed in chocolate bar and soda instead of balanced lunch and I've push myself through whatever I needed or wanted to do without looking back. Ofcourse I usually crash afterwards and I should know better, but as a manager you do what you have to do to get the job done.

I've only recently started taking my one a day multi-vitamin and it seems to help with my nervous legs and it might be helping with my hairloss. There is always 2 or 3 strands on my pillow, there is over 20 strands on my jacket by the end of the day, i probably lose a 50 in the shower. At any given moment I can pick a handful of strands by simply running my fingers through my hair. I don't have thick hair, and I'm not bald, but I never associated with anything in particular. About a year ago I had my potassium, sodium and iron levels tested and they all came back within range, but they were all below average.

A One A Day isn't going to do it. I have individual bottles of vitamins in high doses. I have been found to have low potassium, magnesium, Vitamin D, B-12, ferritin, etc. Have you had ferritin checked? I was having RLS issues and found out my ferritin was 18, but iron level was normal. I did some research and found out that a ferritin below 50 can cause RLS. I bought some 325 mg. Ferrous Sulfate. A person should not take it though without being monitored.

yes, they checked my ferritin last June, and my count was 53, according to Kaiser the standard range is 22 - 291. I think my count is low but still withing the accepted range. I don't think I have RLS, my leg thing is not only at night or when it gets dark and it doesn't spasm every 10 seconds. Rather my leg thing is somehow associated with exercise. On weeks that I don't walk, hike or run I get a weird sensation that feels like my calve muscles, tendons, fat ect, is expanding beneath my skin. This is only below my knees, I think RLS can also affect your arms. If anything it might be associated with all the walking and running I use to do and having had really strong muscles. Since I don't run nearly as much as I use to the muscles have atrophied and this might be remnants of muscle deterioration. i know it sounds weird, but as a teenager I was walking/running 50/60 miles a week. I'm fortunate if I can walk 10/15 these days. I wonder if there is something to be said about the things we do as children/teenagers while our bodies are developing, along with our genes, that shape our health as adults.

Hey been a baaaad week. Yuucko. I'll start with the hairloss explaining. I have a full head of hair and at the time was growing my hair out. I do my hair over a large countertop sink,, and hair literally collects on the counter, so much I have to gather it up and put it in the trash. Then when I am doing better I only have maybe under 5 hairs or so. When I was really bad, my hair started thinning all over, particularly on the top, and it didnt follow any baldness pattern. It was just general hair falling out daily. I had luckly had longer hair kind of like...Justin Bieber (I styled my hair way before he came around to the music industiry, but anyway..lol) I was able to sweep my hair across and cover up my low hair amount. I can always tell if I am starting to flare, cause my hair suddenly begins coming out.

For my hair and general health for Lupus I use Nioxin Number 4 shampoo/conditioner, Nioxin vitamins, and over 2gms of fish oil. It all helps I've noticed now that I've used it consistently for over 2 years. My hair is not as dense as it used to be, but it's shiny and healthy and it is stronger at the root. I reccomend it all, it costs some money, but works. I use Carlson's multivitamins.

But this week was sucky. I have been battling with my pain and the pain meds cause my doctor is more concerned about himself than my quality of life. So I was havine bad pain wednesday, then thursday I got a 102.3 fever, and fevers are my primary Lupus flare symptom. So I got put on 40mg Prednisone, saw my rheuma on friday, and we planned to repeat Rituxan. Then I get a call later on friday, and I am told my WBCs are only 0.9 and they are concerned. I fight them a bit, but I give into getting outpatient Neupogen injections for 5 days. Insurance forces me to go to the center to get the shots, to confirm the med is given as it is expensive, even thougH i am an RN that knows how to give shots. So Im on day 2 of the injections. It hurts my longbones, oye and tires me out. Im not sure when we start the first Rituxan, need insurance approval. So I feel horrible, not a great time to taper narcotics for my pain. We think the stress of the tapering and the increase in pain sent me over the edge of a flare again. Unfortunately. I am trying to get a new pain doctor that is more compassionate.

Fun times! Lol....and btw vitamins are pretty important. I take a lot of calcium/vitamin D as well cause my bones are also thinning from prednisone badly.
Nate

I do now think the poor way I manage my body through my preteen and teenage years played a big part. I was overweight and insecure which meant I lived on the computer, didnt exercise a lot, and ate poorly, dieted a lot. I wish my parents had been more strict with me, but I know I was impossible. If I have kids I will defiently try to keep them active and healthy, eating right, getting enough sun. Cant go back in time though.

Nate:

I just got a TENS Unit and OMG! It's been three or four days and it is fantastic! I used it yesterday for about 6 hours total, and woke up this morning nearly pain free. It lasted almost all day and I put it on again. No side effects like the horrible drugs and it works better than any drug I've ever used. I read that it does the same thing as Morphine, but naturally. See if you can try one out. I hope it doesn't become less effective, it's not supposed to, but right now it's great! I can move!

have used my tens unit for 3.5yrs. it is nice but not for full body pain
Nate

It has worked for full body pain for me. Nothing else did. This has made the bottom of my feet stop hurting, my joints stopped hurting and my muscles are amazingly loose. I hadn't realized that I've had a headache longer than I can remember until it went away. I'm still taking all of my meds, they certainly weren't working alone.

How long do you wear it?

I feel like I'm the third wheel in the Nate and Sandi party.
But what is a "TENS Unit"?

Nate, I had a hair dresser recommend Nioxin to me as well years ago. She too thought I lost alot of hair. I bought the shampoo and conditioner and used up bottles. I liked that tingling sensation, but I don't think it did much to help with hairloss. So I stopped using it. Who knows if it really starts to bother me, I might consider taking fish oil vitamins, since I don't eat nearly as much seafood as I would like or should.

Well thanks for the advice and I'm sorry to hear about your bad week. It doesn't sound like much fun. But it sure sounds like you are on the right track for what is important, eating healthy, being active, etc. Hope you feel better soon.

Michel, see this link for the TENS unit definition: en.wikipedia.org/wiki/Transcutaneous_electrical_nerve_stimulation

They are a wonderful invention. I fell about 5 years ago and had a stress fracture (hairline cracks) of the 8th Lumbar. I was still having muscle spasms if I walked very far or had to sit for long periods of time when I was scheduled for a vacation to take my nephews and parents to Washingtom D.C. for a long planned vacation. My chiropractor ordered me the TENS unit and it was the only thing that eased the spasms so I could get to sleep after doing the days of being a tourist.

Sandi- Where do you wear your TENs patches? At times I'll wear the unit for hours as well, have even fell asleep with em on htough yoiu arent suppose to, I never had any skin issues.

Well, nix the "it works great" thing. It didn't do much at all today. What's up with that? Why would it work great on the weekend and not at all on a work day? I wore it just as much and couldn't get any relief. I was hoping for consistency.

Nate - I move them around on my back and neck. That is where most of my problems are. A big portion of my pain is due to Lupus myalgia and disc degeneration in neck, along with herniated discs. When that calmed down, so did the rest of the body pain. I haven't been able to move like that in years.

Well, tomorrow are the steroid injections. We'll see if that helps.