It seems my body is less than satisfied with one diagnosis. Lupus wasn’t enough so it developed fibromyalgia. When that wasn’t enough it developed gastroparesis.
Simply put, having gastroparesis means that my stomach muscle doesn’t contract properly and I end up with food stuck in my stomach for hours at a time. Often, this means that I just throw it back up because my body gets confused. I have issues with acid reflux because the food and acid get stuck there. It also means I’m never hungry and am almost constantly nauseous.
It took me almost six months to get an appointment with a gastroenterologist/GI doctor. He did an endoscopy. Noted a large amount of acid erosion and put me on a prescription antacid, omeprazole, to reduce the acid in my stomach and help the erosion heal. Mercifully, he also gave me an anti-nausea med, Zofran (ondansetron), which helps a ton.
I wasn’t satisfied with this doctor so I found a new one. Of course, it took another six months to get that appointment. She was awesome. She ordered a gastric emptying study. They had me eat a plateful of eggs with a contrast in them and then take a number of x-rays over a few hours to see how the food moves through. Inexplicably, the study came back normal. The doctor was flabbergasted, but continued to treat me as if I have gastroparesis, which is evident from the symptoms. She gave me reglan (metoclopramide), but only to use as needed. She doesn’t want me taking it all the time because it has some nasty side effects.
Over the last year I have found some things that help me manage the gastroparesis other than the med. I don’t eat raw salads anymore, because those can’t be digested well with my stomach the way it is. I don’t eat high fat meals, and I don’t eat big meals anymore. (Thanksgiving is fairly ruined.) Together, these changes help minimize the number of meals that I end up throwing up.
However, I know a lot of people with other chronic illnesses seem to develop gastroparesis. Whether this is due to the illnesses or the meds that we take for them is beyond me. All the same, I’d love any advice on what else seems to work.
Since I forgot to post an update after my last appointment, I wanted to make sure I got the new update up as soon as possible. I switched rheumatologists in February, and I couldn’t be happier with my new doctor. My last rheumatologist had zero social skills and didn’t really listen to anything I was saying. This rheumatologist is very chill and actually listens to what I have to say. (.. and those readers who follow me on twitter will know that I was greatly pleased to see bright coral nail polish on her toes AND finger nails. It’s the small things, isn’t it?)
Last februrary we switched from methotrexate (mtx) to azathioprine (Imuran) to see if I could get the same results without the nasty mtx side effects. So far the results have been good, my liver enzymes are normal, and the side effects have been bearable to so we’re sticking with the azathioprine.
In February, we also added gabapentin. I was a little nervous about this after all the weight I gained on the pregabalin. The pregabalin didn’t help my pain at all so I’d been weaned off of that by the last rheumatologist. So far, the gabapentin didn’t really help my pain either. It did help my restless legs and it knocks me out most nights so I have less trouble with insomnia. Unfortunately, it also makes me wake up with a hangover and feel drunk and groggy all day. So my doctor stopped my morning and afternoon doses. We’re going to try dropping the night time dose from 600 to 400 (or if that isn’t enough to help the sleep and restless legs hopefully 500 will work). Guess we’ll see how that goes.
I’ve been avoiding the pain meds as much as possible all these years. I fear pain med addiction. I fear labels like ‘drug addict’ that many chronic illnesses sufferers face and make it harder for us to get the care we need. Unfortunately, the costochondritis has gotten out of hand. It causes enormous amounts of pain. On bad days, I’m stuck whimpering or even crying in bed. The rheumatologist felt along the ribs and freaked out. She wanted me to get on low dose prednisone, but I really didn’t want to get back on the pred. So she gave me a pain killer called tramadol used for fibromyalgia sufferers that I can use when I really need it. It isn’t going to fix the problem, but it might make it more bearable. I’ll let you know how it goes.
4. my poor wrists
I’ve been using this time at home to catch up on years and years of reading list backlog. Well, in between Buffy marathons on Netflix Instant that is. Unfortunately, my wrists aren’t enjoying this as much as my mind is. Last February, my doctor told me to get an ereader. I didn’t. I go through too many books too fast to afford buying the books and libraries still have limited lists of ebooks. This time she put her foot down. She wants me to get an ereader AND to find splints that go around my wrist (but not over the whole hand and wrist). Joyous. Time to do some research on ereaders! Anyone have any advice?
5. sun exposure
As expected, I got in some serious trouble about the tan lines from the wedding memorial day weekend. Oops. I got off easy though because I was wearing my big hat and since I only had a greasy sunscreen it was obvious that I didn’t forget that detail. Still, the importance of avoiding sun exposure was made very, very clear.
So my parents have been after me for months to see this holistic MD that is treating a family friend. Unfortunately, he wasn’t taking new patients. I called for an appointment sometime in early January. They told me his next appointment would be in August. Finally, our friend helped us to get an appointment.
This doctor is focusing on cross-cultural medicine and integrative medicine. I was told that he has a big focus on gastrointestinal bacteria and knew a lot about Eastern medicine. I was assured that he won’t take my off any of my allopathic medicines. (I told my parent’s I don’t mind any additional treatments, but I’m not comfortable with stopping the allopathic meds.)
I will be the first to admit that I went into the appointment rather sceptical, but willing to listen to what he had to say. The appointment went on for 1.5 hours!! He asked A LOT of questions – most of them about the puking that’s been plaguing me and my GI system in general.
Then he gave me some tests to take at home. Now, peeing into a cup and pipetting that into some test tubes is truly not too bad….. but pooping into a bucket, scooping that into a tube… and then, as if that wasn’t gross enough, stirring and shaking that tube. Three days in a row. Yuck and double yuck.
Still, I did what I was told and mailed the specimens into the lab somewhere in the North Carolina. It will take awhile to hear back though, so I guess we’ll see what he has to say when he gets the results… that’s probably when things will get interesting.
In the meantime, he has sent me for an Ayurvedic consult.
Has anyone else seen a holistic MD?? Thoughts? Experiences? Advice?
Man, it has been one ROUGH week. I had a great weekend last weekend. I spent it with my cousins – their grandparents and aunt (and her son) were in town, so it was a full house. It was fantastic. Good food, the feeling of family, exceptional.
Then came Monday. I thought Monday would be good – I had a great weekend with lots of sleep and healthy food. No such luck. Monday was brutal. I could only manage to crawl out of bed to use the bathroom – and that too only when I had to pee so badly I couldn’t hold it in anymore. Tuesday was not much better. The fibromyalgia pain seems to be getting worse and worse, it feels like every muscle is on fire but not on fire.. maybe pins? It’s hard to explain the pain. My joints – even the ones that aren’t very swollen from the lupus flare up – HURT. A lot. It just seems to get worse and worse.
The only reason I dragged myself out of bed on Wednesday was that it was a really bad day of school to miss. Some things can’t be made up, so I went. I ran into my doctor that day – he didn’t look pleased at the sight of my joints, but said he hoped the Lyrica (pregabalin) kicks in soon… but it ended up being a 12 hour day. And I hadn’t started studying for my test on Thursday. Which meant 3.30am bedtime and only 4 hrs of sleep. Then Thursday was another 12 hour day.
I COLLAPSED into bed. I slept for 8 hours, but then had a 3.5 hour class today – the kind where you’re watching a procedure and there was nowhere to sit down. I’m sure you can just imagine how much fun that was. My poor bed must be wondering why I never get into bed anymore. I just collapse onto it like my knees have buckled. I feel like someone beat me up with a baseball bat. And after 3.5 hours on my feet (plus the 15-20 min walk in the heat each way) I feel like I did before I slept for 8 hours. I feel like I didn’t sleep at all. Ughhhh.
I have lots of studying to do this weekend, but when will I catch up on sleep?! Sigh. I hope next week calms down a little, because this can’t continue…
I just got back from an appointment with my rheumatologist.
He adavanced the prednisone taper a little. Yay! The rest of the news wasn’t as much fun to hear. He thinks the methotrexate just hasn’t had time to work yet, so he didn’t mess with that except to split the dosage over two days to try and relieve some of the dizziness I get with it.
Then he added pregabalin (Lyrica). He thought I might be developing fibromyalgia the last couple of appointments and even tested for the fibromyalagia points two weeks ago, but only one was mildly tender. This time almost all the points he checked were very tender. He said a lot of people with SLE develop fibromyalgia. Apparently amitriptyline is also very effective for fibromyalgia pain (and much cheaper) but it takes much longer to kick in. Plus I’m allergic to amitriptyline… Since it’s developing so quickly, he said its better to give the pregabalin, because in his experience getting the fibromyalgia under control faster seems to lead to it going away as the flare up fades more often. (As opposed to still having the fibromyalgia once the flare up clears up.) … so, fingers crossed!
Sigh. Will it never end?
If there’s one thing that lupus teaches you, it’s that. It stops you from doing the exercise you want, it keeps you from the Peace Corps, it limits your career choices, your hobby choices, your (usable/enjoyable) free-time, and, sometimes, your friend choices. Lately, I’ve come to consider these limitations just more symptoms of the disease.
I went back to the doctor yesterday. He raised the methotrexate dose AND reset the prednisone taper back to 30mg. I had worked my way all the way back down to 9mg, so that was quite a blow. I get so jittery at 30mg! Sigh. On the plus side, at least he doesn’t think I need to take a break from school…
Now, as much as I know that my doctor is my ally, I have to say I’m dreading my appointment on Tuesday. The methotrexate hasn’t kicked in so far, and the increased prednisone may be helping the joints but it hasn’t made an impact at all on the fatigue.
Sigh. Do you ever feel like going to the doctor never brings anything but bad news your way? It feels like each time I go all that happens is that my med dosages go up or new meds get added on.
I think at this point I guess I’m getting scared that my doctor will tell me I need to take a leave of absence from my program, and I’m really not ready to do that yet… but then, how often does lupus leave decisions like that up to me, right?