Can you get Raynaud’s everywhere? #lupus

I have Raynaud’s Phenomenon. Blood vessels respond to temperature change by spasming and changing color. My feet are especially sensitive, and are ice cold most of the time due to inadequate blood flow. My hands get pretty cold too, which doesn’t help the pain and stiffness.

As time goes on, I am noticing more and more places on my body that are ice cold. The Raynaud’s that is in my feet has moved up to my ankles. I get ice cold spots on my shoulders and hips. Also, my knees get pretty cold from time to time. I know that normally a person wouldn’t have a lot of body heat coming from their joints, but to be cold as a corpse is a bit odd. Even though the Still’s Disease gives me fevers and hot swollen joints, I still have periods of time throughout the day where parts of my body are ice cold, and I also get the chills. It’s hard to tell if one causes the other or if they both just happen at the same time each day.

I also tend to get livedo reticularis when my parts are cold. If you’re not familiar, it’s a purple lacy rash. It is caused by blood vessel spasms under the skin, which sounds a lot like raynaud’s.

I’ve been told by one doctor that I have “vasculopathy”, which is really just a blanket term for blood vessel disorders. It doesn’t explain the how or the why, or what to do about it.

In the past I’ve tried nifedipine for the Raynaud’s, since it’s especially bad in my feet. But the problem is that it gives me headaches. Anything that changes the natural state of my blood vessels, whether it be dilation or constriction, seems to give me headaches, and that unfortunately includes food. I’ve had to give up cheese and bananas because they trigger migraines. Cardio exercise is also difficult to do without getting a headache.

I do take a calcium channel blocker to lower my blood pressure by a few points, because anything over 120/80 is terribly uncomfortable for me for some reason. The doctors always blow it off as “not that high” but to me it feels like I’m on crack. Doesn’t that mean something’s wrong?

I feel like I am dealing with Raynaud’s Phenomenon everywhere.

 

January-March stuff #lupus

I’ve had some testing done and some medication changes so I figured I’d write about it. I’ve been really struggling with brain fog lately, so enjoy my word soup.

Back in October or November, I started having an itchy patch on my right nipple. The skin became hard and I was quite worried about it. I already knew from a previous  ultrasound that I have dense breast tissue, which is painful and doesn’t have a treatment. But I was alarmed by the new symptom along with an enlarged sore lymph node on my left underarm. I requested another ultrasound where they looked at my breasts, and also my underarms. The ultrasound didn’t show anything unusual but I wasn’t satisfied with that test alone. I pushed for a mammogram, which they denied at first because I am under 40, which begins my rant:

With all the breast cancer awareness events and t-shirts and pink ribbons everywhere all the time, why do I have to beg for a mammogram? Because 26-year-olds don’t get breast cancer? They gave me such a hard time about it, and then when I finally went to get it, they told me “Don’t come back until you’re 40.”

My symptoms really scared me, they lined up with Paget’s Disease. I just had to know for sure that everything was normal. And it was, aside from finding out that I have painful dense breast tissue growing all the way up into my armpit area. Now I know why I hurt so much there all the time. And the lymph node is nothing, just an enlarged angry lymph node, probably from the lupus.

Dense breast tissue does raise your risk for breast cancer and I will be pushing for another mammogram when I feel like I need to, regardless of what a snooty desk clerk tells me in between smacking her gum and biting her fake fingernails. I urge anyone else who feels something isn’t right to do the same.

So, that’s it. Just sore boobs. Oh goodie.

I recently went to get a second opinion on my lupus treatments and was told I was being treated “conservatively” and the doctor decided it was worth a shot to raise my humira dose from twice a month to once a week. I’ve been doing weekly injections for a little over a month. I think I feel more tired. My pain levels are the same, they might even be worse. My elbows have been pretty bad, and recently my upper back and neck. I have the chills during the day, and I get really hot at night. I think I had that before but it seems a little worse and a little more predictable now. My lower GI pain is about the same. I seem a bit rashy lately. I did notice that being in the sun doesn’t seem to make me sick right away like it usually does, but also it’s not quite summer yet. It’s only been a short time since I increased the dose, so we’ll see what happens when more time goes by.

I went to see a new GI doctor that was recommended to me by my other new doctor. He said that my other GI was a “procedurist” and that this new doctor was good with motility issues. She diagnosed me with “functional dyspepsia” and explained that there are too many nerve signals being fired off between my brain and my stomach. She is treating me with amitriptyline. It’s an antidepressant but in small doses doesn’t alter mood and can help stop some of the excessive nerve signals. I started off at 10mg about a month ago and increased it to 20mg a few days ago. So far I feel a lot less of the gnawing gastritis pain at night which has been nice because I was losing so much sleep. I don’t really think much else has changed but I have to give the 20mg a chance to work. I’m really hoping eventually I will be able to eat some regular foods again. I’m still on the bland diet and it really sucks.

I am still having trouble swallowing, and clearing my throat all the time. I am still accidentally inhaling food, and feeling full too quickly.

I’m giving mindfulness a try. In my interpretation of it, it’s just teaching yourself how to give your mind a break so that you are not overloaded with stress. Some people practice traditional meditation but that can be difficult and uncomfortable for people with chronic pain and focus issues. So far I am figuring out when I need these mind breaks, and doing something tactile and completely focusing on that one activity. I was told to try something like petting my cat or rubbing lotion into my hands. It’s really hard to do it and to focus on it without thinking about actually “being mindful”. My brain likes to go 100 miles per hour sometimes. I think between those two activities, hand lotion one seems to be easier to focus on, since it feels more sensory (but without sensory-overload). Some people concentrate on their breathing to be mindful, but breathing exercises usually stress me out. And my hands get dry anyway, so the hand lotion is a good choice for the time being. I hope I can get a grasp on it and take my stress levels down a bit. Most of my stress is from pain which is something you can’t separate yourself from, but if I can teach myself not to focus on it for even a short time I think it could help.

I think I experience mindfulness when I listen to music sometimes, because I become completely engrossed in it. But music isn’t always appropriate when you feel like you are having sensory overload, and lately I’ve had more problems with feeling “sensed-out” so it hasn’t been a good solution on some days. I started to feel like music was giving me anxiety and I’ve never experienced that before, and it sucks because it has always been a good distraction throughout my pain journey.

I wonder if daydreaming counts as mindfulness since I do it a lot and completely forget where I am, ha.

I still have costochondritis. I can’t really wear a bra much anymore. I have to shower before bed because my rib cage is so stiff. I’ve been putting voltaren on the area for about a year now. I don’t really feel like it does much, to be honest. I feel constricted in my chest all the time. And when I sit in certain positions it gets worse. The hiatal hernia probably doesn’t help either. I sat on the couch for a bit recently and ended up feeling like someone was tearing a hole in my diaphragm for a few days after. I have to sit on more firm surfaces, but at the same time I have to have a cushion under my bony ass or else it goes numb. It’s always a contradiction with this disease. I miss being able to sit on my couch. The problems I have with my body are stupid and frustrating.

My brain fog seems to get worse every year. I am looking into treatments for that and trying to decide if I want to put myself through expensive grueling 6 hour testing or not, so they can tell me, “Yup, you have brain fog.” We’ll see.

I had a sore throat for like a month for no reason, that was fun. Thanks, Still’s Disease.

I suppose that’s about it

ttfn

 

 

BLOG ALL THE THINGS #lupus

blogallthethings

I was probably supposed to write about stuff in separate blogs over the past few months but sometimes my brain just isn’t up for it.

I had a manometry and pH study to evaluate for acid reflux in September. First I had a big tube probe thing put down my nose which was really fun, and I had to swallow water in intervals over the course of half an hour. Then I wore a smaller tube probe thing down my nose for 24 hours which was pretty awesome and I felt really sexy. The findings were rather interesting and not at all what I expected. My pH study was normal except for one event of acid reflux. My manometry however showed that I have weakeness in my esophageal muscles and “pooling” of food/liquid when I swallow. So now I’m wondering if that pooling is what is reflux-ing, instead of acid. After I eat I feel stuff come back up and I have to clear my throat for an hour and its really annoying. I just feel like I have stuff coming up a lot of the time.

I also seem to be very mucus-y for some reason. It’s in my throat and around my vocal cords all the time and it’s very annoying and uncomforable, and I just cant seem to get rid of it. I’m taking mucinex but I can’t decide if it helps or not.

I went off all the stomach meds for the testing and didn’t go back on them for a while because I didn’t feel any different. I have started taking the carafate again once at night because I still have gastritis that refuses to heal and the pain from it keeps me up all night. Unfortunately lately the carafate seems to be making me really nauseated now and last night I almost threw up my dinner.

Recently I’ve been having a lot of headaches and neck pain and vertigo again, so my neurologist ordered an MRI and a repeat SPECT scan. We were concerned that the vasculitis is making a comeback. I had them done this past week and I do not have vasculitis again. However, it came up on the MRI that my Chiari malformation is 8mm. I’ve had doctors write it off and tell me I don’t even have chiari, so it’s been on the back burner for a while. My neurologist tends not to be very quiet or humble, but he was today on the phone, so I believe he is concerned. He wants me to do another MRI with a flow study to see if fluid is being trapped by the herniation.

I’m having bad sleep apnea episodes. I am going to investigate central sleep apnea. As soon as I start to fall asleep I jerk awake. And this can go on all night sometimes, and other nights just for a few hours, or a few minutes. The severity comes and goes. An ENT told me that if you know it’s happening then it’s not sleep apnea, but that sounds dumb to me. The strange thing about it is that it doesn’t happen to me all the time, it flares, but the flares lately have been constant. I know this problem with my esophagus probably doesn’t help either if liquid is pooling when I am trying to sleep. Also, I am still dealing with chest tightness that is probably costochondritis and I know that doesn’t help the situation either. I’m still sleeping propped up. I tried to sleep flat but it gave me heart palpitations for some reason. It just didn’t feel right. Sleeping propped up makes my body hurt but I feel like I can’t go back to sleeping flat yet.

I also am getting some cognitive testing in the next few months because I have some pretty severe cognitive problems. It makes it hard to write which is probably why I haven’t in a while. My brain feels broken.

I got the flu shot for the 3rd year in a row and I didn’t die, so I recommend it if your doctor recommends it. If you have autoimmune disease or have family or friends with autoimmune disease please don’t get the nasal mist, just get the shot. The mist can make certain groups of people sick.

Other than that, my joints are killing me lately. I’m having fevers and night sweats. My headaches, vertigo and neck pain have been bad. I still pee a lot. My septum is deviated and my nose is clogged all the time. I’m still on the boring reflux diet because of the gastritis. It hurts to wear clothes. My eyeballs are inflammed every morning. I need the Wizard of Oz.

Are you a little bit better? #lupus

My rheumatologist asked me an interesting question a few months ago. “Since last year, would you say you are 40% better (since starting Humira)?”

It was a hard question to answer. I feel like yes, some things are 40% better. But I am now dealing with new things, and some other things are worse. So to me, it depends on what symptom you’re talking about. I feel like I’ve traded awful symptoms for other awful symptoms, which doesn’t much feel like relief.

Reacting my frustration, he went on to say that when a person feels a little better, they start to want to feel a whole lot better, and I agreed, although I felt like that wasn’t quite what I was feeling.

I’ve thought about this conversation for a while, because I haven’t been able to figure out how to put into words how I am feeling, but in the middle of the night a few nights ago, I figured out what has been bothering me.

Biologics like Humira are really hard to obtain. Insurances don’t want to approve them because they are new and expensive. They often subject a patient to step therapy, which is just trying cheaper medications that probably won’t help first, before approving a biologic. There is so much time that gets wasted while this goes on. So many side effects that are dealt with, without much relief. A lot of waiting for something better. There are a lot of hours spent playing phone tag and fighting with the insurance. Even if insurance eventually runs out of reasons to deny a biologic, they really drag their feet about it. Phone calls are “missed”. Faxes and paperwork are “lost”. There’s always some asshole who can’t spell Lupus, who doesn’t have one iota of medical knowledge telling you no. Then, if you are lucky enough to have jumped through enough hoops, you’ll get to schedule a delivery. And you’ll cross your fingers that you don’t have to chase down the delivery man because some of them can’t be bothered to get out of the truck when they realize your apartment has a gate.

And you cross your fingers that this is even the right medication for you, while you wait for a few months to see if it even works.

With all of the stress and waiting and fighting to finally get the medication in your possession, you would think it was the holy grail of treatments. It must be good if it’s this hard to get.

That is what has been bothering me. It took a lot of fighting to get here and I just feel like the amount of relief I’ve felt so far doesn’t equal out. It’s just been a very “this is it?” feeling.

 

Acid reflux update #lupus #spoonie

For the past couple weeks, I’ve been losing a lot of sleep. I’m pulling all-nighters sometimes because I can’t breathe when I lie down. When I do sleep it’s for about 4 hours at a time. I’ve had this problem for a while and it’s gotten to the point where it’s greatly disrupting my life. It’s hard to make plans or appointments when you don’t know if you’ll be able to sleep or not the night before. Sometimes I end up sleeping during the day and it fucks up my medication schedule. I’m so exhausted, and I dread bedtime.

Yesterday I had a barium swallow test. Basically you swallow a thick radioactive liquid while in various positions and they watch on a live x-ray to see how your muscles work, and if it comes back up. They were able to determine that my acid reflux flows all the way up to my esophagus. I already knew this, since I clear my throat all goddamn day long, but I needed them to know it. It was probably a weird thing to tell the technicians, but I said “I’m so glad you guys found something, I’m sick of tests coming back normal.” I feel that way because I know something is wrong and I’m tired of not finding it.

Today I got a second opinion about everything from another GI. I feel like my current one isn’t doing much to help me. His idea is to avoid surgery and control everything “as naturally as possible”, meaning without pills. I’m doing everything I can do, and I’m losing weight and not sleeping. I feel like I can’t even breathe most of the time during the day. The second GI seemed irritated that my other doctor hasn’t been doing much for me, and says my reflux is a significant issue. He gave me erythromycin because in very small doses it is used to promote more gastric motility so my food moves past my stomach faster. We’ve scheduled a manometry which is a test that will determine the level at which my lower esophageal sphincter is functioning. Basically they’re checking to see if the muscle between my esophagus and stomach closes efficiently, which we know it does not, but they need to understand to what extent.

I am also scheduled from my first GI to do an ultrasound on my gall bladder to see if it is perhaps enlarged or inflammed. This could possibly be creating too much acid, or creating the “full” feeling I have a lot of the time

I believe my breathing problem is caused by my acid reflux. If I have a rare night where I don’t have reflux, I sleep just fine. I can’t sleep on my right side. The barium swallow test showed us that especially.

I’ve asked about breathing problems in a GERD support group, without much luck. People always like to pull the “sounds like anxiety” bullshit. I have anxiety and I know what it feels like, and trust me,this is different.

My second GI believes I need surgery, and I do too. There isn’t really  a pill or a diet that that is going to stop reflux if your stomach doesn’t even close up all the way. He talked about doing a laproscopic fundoplication where they fold the top of your stomach around the bottom of your esophagus a little and stitch it to tighten the space between the esophagus and stomach. That way, the stomach would close and there would be no more reflux.

I really would love to feel better.

 

 

A little of April and May #lupus

I know I am overdue for a blog. I don’t really remember where I left off last time. I’ve been to a new cardiologist and I had an ultrasound to see if there was any inflammation around my heart causing me chest pain and shortness of breath. I have yet to know the results of that test because the doctor cancelled my appointment since she will not be in town.

The cardiologist did mention that I could also have a problem with my diaphragm. I’m starting to believe that that is my whole problem. I notice now when my heart burn and gastritis are bad, so are my chest pains and shortness of breath. My breathing trouble at night gets worse when my stomach gets worse. Nothing seems to stay down in my stomach anymore and I’m clearing my throat all day long from the acid reflux.

I started taking Carafate about 5 weeks ago in hopes of healing the gastritis, and so far I don’t feel any better. I still have to eat right before bed and eat in the middle of the night or early morning to get the grinding pain to stop. My stomach grinds even when I just drink water. I’m not sleeping very well. I’m sleeping propped up which has been really hard on my back since I am a side-sleeper. I feel like I can’t breathe when I sit. I feel really full when I drink water. I’m miserable with this problem, to be honest.

My GI wanted me to see a nutritionist to get ideas for meals, but I honestly don’t know what they would tell me to do that I’m not already doing. I can’t possibly eliminate anything else, and everything I have eliminated has been for good reason so there isn’t any way I could put it back into my diet. I have made an effort to still try to be as nutritionally sound as possible.

I’m going back to the GI soon to talk about the carafate and my diaphragm.

I went to see a neuropsychologist to get some help with my brain fog. It’s really bad, so bad that I don’t know how I will ever be a functioning adult if I don’t get it sorted out. I had an MRI on the 10th just to check up on my brain and make sure I don’t have lesions and stuff. The doctor wants me to do some testing for my brain fog but they didn’t have an appointment for me until the end of summer so I’ll just be waiting til then.

I’m still taking the Humira shots twice a month. They are still helping some of my lower GI tract inflammation and also some of my muscle pain seems to be better. I would be hard pressed to say it isn’t helping some things. I am still disappointed that I feel so awful all the time, but I am hoping if I can get my GERD/hernia and my brain fog sorted out, I might not feel so terrible. Those 2 problems are really bothersome and could possibly be overshadowing any other relief I might be getting from the Humira.

I’m having a bad time with vertigo. I’m dizzy just from looking down slightly at my computer screen. I noticed my vision seems a bit weaker lately, not sure if it’s just time for an adjustment in prescription or if it means anything. I do have an astigmatism for which I do not wear corrective contact lenses. I’ve always been fine without torics. But lately it bothers me when I wear my glasses too and those do correct my astigmatism. I tried my toric samples the other day and my vision didn’t seem to improve. It’s not a big deal, just an annoyance. Maybe my vision is blurry because I don’t sleep much. Who knows.

Some of you noticed that I haven’t written a blog in a while. I truly appreciate everyone that follows along with me. I have someone in my life that is harassing me, especially on the internet, and I have continued to write knowing that they read it and that they may decide to bother me more, and that isn’t going to stop me from doing what I feel is important for people who like to read my blog and for myself. I considered dropping out of sight and closing down my blog and making an attempt to write somewhere else anonymously, but I don’t want to give anyone that kind of power over me, and I don’t want to abandon people who have been so supportive in the last 4 years. I’ve recently had a change of attitude over the whole situation and now find it laughable and quite pathetic.

Cheers to that.

Process of elimination #lupus

I’ve had problems with breathing at night for quite a while. It started a few years ago and would happen occasionally, and seemed to get worse when I took tramadol for some reason. It’s gotten worse since then. I’ve seen  a pulmonologist, cardiologist, neurologist and a GI. So far everyone just blows it off.

It’s been really bad. Two nights ago, I was up all night long. I went to bed at 7am. I felt like someone was squeezing my chest, and every time I was about to fall asleep, I woke up choking for air.

It sounds like sleep apnea but I really don’t think that’s it. I tested negative for it in 2014. I’m more concerned that it might be my heart or my gall  bladder.

For most of February I was probably getting 4-5 hours of sleep per night. I tried propping my bed up for a while, which was terribly uncomfortable. I stopped taking any medication that has drowsiness as a side effect since that seems to make it a lot worse. I was doing breathing exercises before bed and whenever I woke up in the night, which only provided temporary relief. If I fell asleep at all, it was by accident.

On the nights I did sleep, I was waking up hot and drenched in sweat, which can sometimes be a sign that your heart is doing fucked up shit.

More recently, I’ve weened off the metoprolol (beta blocker for heart palpitations) and also lowered my blood pressure medication (both at my own will) and I’m doing a little better. I had a stress test last October that showed that my heart was performing well while on the metoprolol, but I’m thinking that it’s causing a problem now.

I’m still taking the Norvasc for my blood pressure, but I’m down from 7.5mg to 2.5mg. My blood pressure is elevated and my heart rate is in the 100s, but I’m sleeping better. I have to sleep.

As you’ve read before, I’ve had some problems with sitting in certain positions. I’ve given up on sitting on the couch because it gives me chest pains and shortness of breath.

I am going to make an appointment with a new cardiologist because my current cardiologist likes to blow me off and tell me to exercise. I’ll exercise as soon as I can breathe.

I am hopeful to find a cardiologist who knows how to look for even the most minor inflammation. My current cardiologist had admitted that sometimes inflammation can be so mild that it’s easily missed.

Also, I’m having a terrible time with gastritis and acid reflux. I stopped taking the Duexis (ibuprofen) and I also think that it’s made a difference in my breathing at night. I occasionally just take over-the-counter ibuprofen. I haven’t had it in a few days though. I’m probably more achy than usual but it hasn’t been unbearable. But I haven’t really left the house in a few days. Also, my period is next week so I know I’m fucked for pain and headaches.

My breathing gets worse when I have my period too. I was thinking about taking the progesterone shots to stop it.

I’m going back to my GI and asking him to check my gall bladder. I’m on 240mg of Dexilant per day, which is a dose the pharmacy didn’t even want to give me, and I still feel like I am drowning in stomach acid.

He has been reluctant to provide me with any real treatments so far. The only reason I have the Dexilant is because my rheumatologist gave it to me. I am hoping that at my next visit with my GI, he will be more proactive. If not, I’ll have to find someone else.

The gastritis is keeping me up at night. I have to get up at 4-5am and eat, and take medication for it so I can (hopefully) go back to sleep. Otherwise I feel like lava is eating the inside of my stomach.

So, maybe it’s my heart, or my stomach, or both. We’ll see.

I am also going to see another neurologist for the breathing issues and a bunch of other shit. I’m having a lot of muscle weakness in my hands and I’m dealing with a lot of brain fog.

For the past few weeks I’ve had some kind of tendonitis in my hip. My knee was bothering me too, but that seems to be better. I can’t really think of anything I did. I tend to bear my weight on my left leg when I’m standing for a while, but I don’t see how that could cause my hip to hurt for 2 weeks. Then again, I suppose it could, since Lupus is a dick.

I’m having a bad time with my body temperature. Sometimes I’m too hot, and sometimes I feel like someone drained all the heat out of me. I’ve been getting cold hands and feet like usual, but I’ve also been getting ice cold spots on other parts of my body, like my knees and hips. I don’t really know what that’s about. It makes me worry about my circulation. I don’t know if you can get Raynaud’s in other parts of your body. Or perhaps it’s the “vasculopathy”. More mysterious bullshit to deal with.

I also have a shivering problem, and sometimes I’m cold, and sometimes I’m not. It’s really hard on my muscles because it makes me really tense. It’s uncomfortable. I don’t know what that is, either.

I have an appointment with my rheumatologist this week. I’m basically just going to reiterate this blog.