dedoubt Posted June 25, 2011 Share Posted June 25, 2011 I've been bopping up and down on various meds for a long time, but this particular cocktail I've been on since about January, though the dosages have changed. I've had a variety of SEs, and I am not sure what is tied to which med (or if some SEs are tied to other SEs like dominos). When my Li dose increased from 600mg to 900mg, I began noticing some stiffness in my right hand, which felt somewhat like edema, though there isn't significant swelling. Then I began to feel it in my ankles, toes, and wrists, mostly on my right (dominant) side, but still very noticeable on my left. I've got a bum right knee, and it began going out on me a lot more, and the stiffness & slight swelling showed up in both knees. Most disconcerting of all, I just started noticing that my neck feels stiff & has that slight numbness I associate with edema. My fingers, knee & toes feel weak and sore. I'm starting to feel as if I am being slowly eaten alive by an invisible being that creeps along my periphery. All of this concerns me, but I am most worried about my neck, because I did have dystonia from Geodon about 6 years ago. Whatever is going on is moving slowly enough that I don't feel it's an emergency, but it would be reassuring to get some feedback about what this might be. My assumption, shared by my pdoc, is that the Li is causing edema, which in turns causes the stiffness. I've also been pretty dizzy since reaching 900mg-- these and other SEs caused my pdoc to lower me back to 600, but my mood had such a bad turn, I asked to go back up (evidence of my desperation to escape my fucking brain). If it makes a difference, my body & brain have teamed up over the years to find a way to reject every med I've been put on. If there is an obscure SE that nobody ever gets but might kill someone, I'll get it. It leaves me willing to accept any SEs that won't outright kill me. So even if your idea is a wild stab in the dark, toss it to me. I'll bake you cookies if your advice helps me feel better AND stay on Li (or whatever other med might be causing this). Seriously, I will bake and mail you cookies. edited because I can't f-ing spell anymore Link to comment Share on other sites More sharing options...
Anna Posted June 25, 2011 Share Posted June 25, 2011 Well, tbh, I don't know enough about edemia to really offer any advice other than checking with pdoc and gdoc about if there is any way to treat the edema? If not, can you back off your li dose and add in something else? I sympathize. Li wasn't a bad drug for me at all except that the side effects were literally killing me, including some nasty kidney issues..... i've been on pretty much every AC known to man and the only one I CAN take is depakote which gives me some side effects, but not many. I would give anything to be on lamictal for example. Sigh. If anyone knows the cure for SJS let me know Good luck, Anna Link to comment Share on other sites More sharing options...
nonsum Posted June 25, 2011 Share Posted June 25, 2011 [irrelevant stuff edited.] this may seem really silly but are you drinking enough water? being just a smidge dehydrated can make you hold onto water something awful. i only took Li for a minute but i remember it making me really dry, and i was only taking 300 mg. Link to comment Share on other sites More sharing options...
dedoubt Posted June 25, 2011 Author Share Posted June 25, 2011 checking with pdoc and gdoc about if there is any way to treat the edema? I will be doing that next week. Because I haven't seen my doctors in almost a week, so it's about time. I have spent so much time in various doctor's offices in the last six months, it's getting really boring. If not, can you back off your li dose and add in something else? My pdoc's recommendation when this first started was to lower the Li, which I did. My moods had begun to stabilize at 900-- which OMG was amazing, I've never had such a quiet brain-- but when I went down to 600, the racket started up again & my moods went back to being out of whack. I'm very worried that the only solution is to stop the Li, because I'm really enjoying this calm. I sympathize. Li wasn't a bad drug for me at all except that the side effects were literally killing me, including some nasty kidney issues..... i've been on pretty much every AC known to man and the only one I CAN take is depakote which gives me some side effects, but not many. My kidneys seemed fine last time I had blood work done, but the edema started after that, so kidney issues have been on my mind as a possible cause. I've been feeling more lethargic recently, too. I think the only ACs I haven't been on are Topomax & Trileptal (though Tegretol didn't work). Depakote just isn't doing much as far as I can tell, but I haven't gone to a higher dose because my platelet count started going down when I was put on it. I already have a clotting disorder, so this was not great news. My pdoc has referred me to a hematologist to figure out if I can increase my Depakote safely or if I should just stop taking it (I'm guessing I will have to stop taking it, as I've had some increased bleeding problems since I've been on it). This will make the third doctor other than pdoc I've had to see for various SE issues in the last six months. For fuck's sake, AUGH! If I believed in a god, I would be shaking my fists in anger at it. I'm willing to take the f-ing meds, why can't it just be easy?!?!?!?!?!? I would give anything to be on lamictal for example. Sigh. If anyone knows the cure for SJS let me know Jeezum criminy. At least I haven't gotten that (yet). this may seem really silly but are you drinking enough water? I generally drink a lot, and have been trying to drink more, but it's hard to do, because I'm already taking in close to a gallon a day. Not to mention that water tastes like poison when I'm on Li, so every glass is a trial. Bleagh. Flavored fizzy water helps, but I hate buying all of the plastic bottles. Link to comment Share on other sites More sharing options...
AnneMarie Posted June 25, 2011 Share Posted June 25, 2011 FWIW, the edema I had settled in the lowest part of my body - feet and ankles if standing or sitting or lying down depending, or a hand if I slept with it off the bed. Creepy. I also blew up all over after surgery, but that is a different issue. More relevant, I thought the initial edema was due to a psych med. It was only partially. Pony up for a visit to your medical doc. It can be an indication of a medical problem. Link to comment Share on other sites More sharing options...
dedoubt Posted June 25, 2011 Author Share Posted June 25, 2011 FWIW, the edema I had settled in the lowest part of my body - feet and ankles if standing or sitting or lying down depending, or a hand if I slept with it off the bed. Creepy. I also blew up all over after surgery, but that is a different issue. More relevant, I thought the initial edema was due to a psych med. It was only partially. Pony up for a visit to your medical doc. It can be an indication of a medical problem. Mine is worse on my right side, which is the side I sleep on. It's weird, I *feel* squishy and numb all over, but I can't see a lot of edema. I guess it just isn't at the pitting stage, so it's harder to see. I'm wondering if there is something else that can do this that feels like edema but isn't actually fluid retention... I will be seeing my nurse practitioner this week, as well as the hematologist, so maybe they can get to the bottom of it. Link to comment Share on other sites More sharing options...
december_brigette Posted June 26, 2011 Share Posted June 26, 2011 Hi, I've been getting a similar stiffness upon awakening when its time around my period. I haven't gone to the dr about it. And honestly didn't consider the Li. db Link to comment Share on other sites More sharing options...
Laume Posted June 26, 2011 Share Posted June 26, 2011 When I went up to 1200 mgs of Li, I felt like I had a basketball in my abdomen from all the retained water...not so good. Have you put on any weight that might explain your joint pain? Even if it is your upper limbs, weight gain can have an effect on joints. When I put on weight my wrists hurt - becasue I was relying on them to help me stand up sometimes...not so good in other words. If your labs come back, it might make sense. Link to comment Share on other sites More sharing options...
dedoubt Posted June 26, 2011 Author Share Posted June 26, 2011 It's constant, so unlikely that it is due to hormonal changes. Any recent weight gain is most likely from the edema, but it isn't a drastic enough change to affect my joints (pretty sure). I did have lab work after my increase to 900, and everything looked fine, which is why I am so perturbed by this. Thanks for the suggestions. Link to comment Share on other sites More sharing options...
wemble Posted July 6, 2011 Share Posted July 6, 2011 you can buy little packets of flavor to add to your water to make it fun (fizzy too!) and avoid plastic bottles. just fyi. =0) maybe exercise to help with the swelling? swimming is supposed to be really good for that. gets everything moving but keeps you relatively weightless. might be something to look into. also your salt intake. don't change it drastically without talking to your pdoc, but if you're eating a lot of salt during the day it could make you dwell. artificial sweeteners too. Link to comment Share on other sites More sharing options...
dedoubt Posted July 24, 2011 Author Share Posted July 24, 2011 Bumped this up so I could update. I had a Duh/Ah-ha! moment recently-- when my lithium was increased, my gdoc would not increase my levothyroxine, which I am taking for lith. induced hypothyroidism. Because the joint pain started when the lith. went up, I was looking for reasons the lith. could have caused it, which made me think maybe it was edema. I finally convinced my gdoc to test my TSH level again, and of course it was elevated, so my levothyroxine was increased. Now, I haven't been on the increase long enough to know if it will help the joint pain, but the duh/ah-ha moment was to wonder "does hypothyroidism cause joint pain"? DERP. Yes indeed, it does. From the Mayo Clinic website: Specifically, hypothyroidism may lead to: Muscle aches, tenderness and stiffness, especially in the shoulders and hipsJoint pain and stiffnessSwelling of the knee joint and small joints in the hands and feet <---- May I say it again? DERP. Carpal tunnel syndrome And this is a classic example of where our US medical system breaks down. Because my pdoc doesn't have a background in treating thyroid disease, he has a gdoc do it. The pdoc will look for reasons the psych medication might cause a problem. The gdoc only knows about the body stuff, and will look for reasons that are related to the body, and in a round about way, how the psych meds affect body functions. BUT, if the gdoc doesn't or isn't willing to look at a problem for a psych patient, guess who's screwed? The patient! Yay! Just like always! I have been through two months of pain, in addition to all of the other hypothyroid crap, because of one doc not being willing to do a test, and because neither doc was looking at the situation holistically. I'm not putting this very well because I am insanely tired... But yah. It sucks. I will post again if the joint pain goes away soon. I hope it does, because I haven't been able to go hiking and it's pissing me off. Link to comment Share on other sites More sharing options...
Anna Posted July 24, 2011 Share Posted July 24, 2011 Sorry about yr exerience, hope the pain passes fast. Good for you for being smart and figuring it out (hopefully). Anna Link to comment Share on other sites More sharing options...
dedoubt Posted July 24, 2011 Author Share Posted July 24, 2011 Thanks. Yah, I really hope that is it, because this sucks. Link to comment Share on other sites More sharing options...
Head Trip Posted October 31, 2011 Share Posted October 31, 2011 Just to add something that doctors are usually unaware of is that you may have Celiac Disease, a wheat intolerance that causes inflamation and auto-immune reactions. I had very bad swelling in the knee and then my ankle and stiffness. I finally asked, after 4 months if I could have Celiac and the Doctor said YES. I took the test and was positive. I asked so many Docs how no one knew, and it was due to lack of training or looking for that as it is very rare to find. It can be triggered by stress. It is hereditary, also and may skip a generation. If you want to know more let me know. Link to comment Share on other sites More sharing options...
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