Aunty Social Posted March 2, 2013 Share Posted March 2, 2013 . Link to comment Share on other sites More sharing options...
Cynful Posted March 2, 2013 Share Posted March 2, 2013 Who does most of your tests for these? My regular doc has only ever checked my uric acid levels, never anything else...oh, maybe magnesium and potassium because of my high blood pressure. Would a rheumatologist do this? I'll be seeing one in April (can't come soon enough). I'm doing pretty good right now. The prednisone I was on didn't do anything much unfortunately but I've got my pain meds at a good level right now (tramadol and mobic - tylenol as needed) and even though I don't like taking so much, I'm functioning well, so I don't want to stop or complain. I hope everyone else is hanging in there. I think about you ladies often and am always telling my dh what I've learned here. Link to comment Share on other sites More sharing options...
Aunty Social Posted March 2, 2013 Share Posted March 2, 2013 . Link to comment Share on other sites More sharing options...
Spryte Posted March 2, 2013 Share Posted March 2, 2013 One last question, and then I'll stop annoying you. :001_smile: (I have done internet searches, but it just confuses me more, because there seems to be absolutely no consensus.) Is it better to take one mega dose, either weekly or monthly, with a lower maintenance dose daily, or to just up my daily dose? Or does it not matter? My doctor had me do a megadose (50,000 IU) once a week, plus 2,000 IU daily. Actually, at one point, I was at 5,000 daily. YMMV. :) Link to comment Share on other sites More sharing options...
somo_chickenlady Posted March 2, 2013 Share Posted March 2, 2013 Hi all, I haven't been keeping up here :( ...(Brace yourself for a long whine, or skip this part) ...Kiddos are both sick, and DH is out of town (isn't that the way it always happens)... DS has Flu A *and* B, and DD (a toddler) has strep throat, but was negative for flu. We are quite the petri dish here. DS is being treated for strep, too, though his test was negative. My mom came up to visit and help out while DH was out of town, and everyone ended up sick - she did, too! Aaack. To boot, she is covered in hives. I am sick as well - I have that all over skin hurting feeling someone mentioned above, plus sore throat, headache, body aches. Whew. Poor DH comes home from Germany tonight, and plans to don his hazmat suit at the door. My grandmother used to say that if things don't get worse than this, I can handle it... That's what I keep telling myself. :) I just skimmed the last few posts, and wanted to add that I also took higher doses of Vit D to get the level up. I took 50,000 IU weekly, and 2,000 daily. 2,000 is my maintenance dose. So if one's level is very low, it really may help to take a higher dose to get it up and feel better quickly. One quick Addison's question... (for my Addison's Buddies)... I am stress dosing at my doc's suggestion, since I'm sick too. My plan was to stress dose for 3 days. Does that seem adequate? How do you know when to stop? I am still new enough to Addison's that some guidance would be great... :grouphug: :grouphug: :grouphug: To the bolded - I stress dose until I'm back to feeling normal again. If you are sick for a week, stress dose for a week. Your body will need it. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 2, 2013 Author Share Posted March 2, 2013 This current virus is hitting me hard. Oscillo and Airborne are keeping me from having much symptoms but I guess my adrenals are being taxed as my body tries to fight off the virus. I can barely keep my head up today and am constantly trembling. The only reason I can type right now is because I just ate and the food gives me a burst of energy. I hadn't thought of taking more adrenal stuff. Will do that now. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 3, 2013 Author Share Posted March 3, 2013 Good morning. How are you today? My adrenals are back in the toilet. (Pardon the imagery.) I had actually stopped taking adrenal meds because I had been doing so well. Dh is mad at me for having stopped them in the first place. Oh well. I'm back on them now. Does anyone eat a special diet for their condition? I'm eating an adrenal diet (I was doing that even without the meds) which means veggies and protein at every meal and no grains. The idea is to keep blood sugar as level as possible and to not stress the body in any way. Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted March 3, 2013 Share Posted March 3, 2013 I have lurked around this thread but never joined in. DS was diagnosed with Crohn's disease in November. It has been a long, hard last few months. I have never been more thankful that I homeschool :) The flexibility has been a life saver! I have Hashimoto's and I have had some struggles with my TSH. I notice that several on here have Hashimoto's and I would love to bounce a few thoughts of of ya'll, if you are up to? I live on a grain free, dairy free, legume free, sugar free diet. It helps me tremendously. I convinced myself that I could start slowly reducing my meds. I felt great on half the meds and hoped to go completely off Synthroid. My standard TSH before cutting my meds back was around a 1.5-2. In January my TSH was 18 and my recheck from earlier this week came back at 21. My T3 and T4 are holding fairly steady though. Of course, My endo is having a fit. He wants me on more meds (like yesterday!). My T3 has stayed perfectly in line though? My T4 is slowly dropping and it is about to creep down below normal so I am aware that more meds might be necessary. I am frustrated. I don't want more meds. Someone remind me why I need them, lol. Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted March 3, 2013 Share Posted March 3, 2013 Does anyone eat a special diet for their condition? I'm eating an adrenal diet (I was doing that even without the meds) which means veggies and protein at every meal and no grains. The idea is to keep blood sugar as level as possible and to not stress the body in any way. I do notice a night and day difference in inflammation and energy when I stay dairy and gluten free. I feel my best when I avoid grains and legumes too. There is a great website. www.whole30.com Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 4, 2013 Share Posted March 4, 2013 I have lurked around this thread but never joined in. DS was diagnosed with Crohn's disease in November. It has been a long, hard last few months. I have never been more thankful that I homeschool :) The flexibility has been a life saver! I have Hashimoto's and I have had some struggles with my TSH. I notice that several on here have Hashimoto's and I would love to bounce a few thoughts of of ya'll, if you are up to? I live on a grain free, dairy free, legume free, sugar free diet. It helps me tremendously. I convinced myself that I could start slowly reducing my meds. I felt great on half the meds and hoped to go completely off Synthroid. My standard TSH before cutting my meds back was around a 1.5-2. In January my TSH was 18 and my recheck from earlier this week came back at 21. My T3 and T4 are holding fairly steady though. Of course, My endo is having a fit. He wants me on more meds (like yesterday!). My T3 has stayed perfectly in line though? My T4 is slowly dropping and it is about to creep down below normal so I am aware that more meds might be necessary. I am frustrated. I don't want more meds. Someone remind me why I need them, lol. I'm so sorry to here about your son. I have several in my extended family with Crohn's. It definitely is tough. I have Hashimoto's and so does my 14 yo dd. I'm just curious why you want to cut your meds? I haven't heard of anyone ever having side effects from Synthroid. Are you having any? I would definitely keep up with the diet, but Hashimoto's literally kills your thyroid. Eventually, from what my endo has told me, your thyroid will cease to produce hormone at all. Keeping your tsh less than 3 is really important and I don't know of any reason not to want to take Synthroid. So I guess I'm just wondering what has prompted you to decrease your meds. Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted March 4, 2013 Share Posted March 4, 2013 Oh, Andrea....just my crazy desire to be med-free, I suppose. Also, after going on the whole 30 diet, I felt like I was on too much meds. Instead of doing like a normal person and getting labs pulled, I just started slowly cutting back. I was on 150mcg. I had inched back to 75. I have now been prescribed 125mcg. I hope maybe the 125mcg will be a good fit for me? I was having hairloss and some other mild issues that I thought was a side effect of Synthroid. These issues did resolved when I cut my meds back and that is why I began to cut back more. It was probably a big mistake and I am trying to correct it now. Link to comment Share on other sites More sharing options...
TravelingChris Posted March 4, 2013 Share Posted March 4, 2013 No, hair loss is from the Hashimoto;s, not the Synthyroid. Maybe you weren;t on a high enough dose? Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 4, 2013 Author Share Posted March 4, 2013 Good morning, everyone. How are you doing today? Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted March 4, 2013 Share Posted March 4, 2013 I am on day three of 125 mcg of Synthroid....whoop, whoop. I feel like I can take on the world. At this moment....who knows how I will feel in a month, lol. The funny thing.....I am so hungry and I haven't had an appetite for a long time. I should have never halved my dose. (me, slapping my forehead). Link to comment Share on other sites More sharing options...
Aunty Social Posted March 4, 2013 Share Posted March 4, 2013 . Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 4, 2013 Author Share Posted March 4, 2013 Thanks, Aunty. I'm slowly getting better. I have a bit more energy today. I just don't know how long it will last. And when it quits on me, there is no warning. Boom! I can barely even hold my head up! I hope that you recover from your weekend. Link to comment Share on other sites More sharing options...
TravelingChris Posted March 4, 2013 Share Posted March 4, 2013 I went to the Womans' Retreat at a nearby state park this weekend. It was great but tiring. And no, I didn't do that much but I didn't get the rest I needed so yesterday afternoon after I cam home, I slept for hours. Then I forgot to go to my ultrasound appointment this morning so I have now rescheduled that for Wednesday afternoon. Before then, we have four medical appointments, at least. One this afternoon, two tomorrow, and two, including the ultrasound on Wed. BUt that doesn't count any more PT appointments my dd will need after today's initial appointment nor have I scheduled her allergy injection yet. Then I have two more on Thursday (probably three with the shot). and two more on Friday. That is what my life is like= appointments, more appointments, and even more appointments. It is what comes of having multiple chronic illnesses, pain, and having a child with multiple medical issues. MOst people have no understanding how tiring all these things are. It certainly doesn't help that most places other than my home are filled with the evil fluorescent lights. LED, halogen or plain old regular are all fine- banish the fluorescents. Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 4, 2013 Share Posted March 4, 2013 I went to the Womans' Retreat at a nearby state park this weekend. It was great but tiring. And no, I didn't do that much but I didn't get the rest I needed so yesterday afternoon after I cam home, I slept for hours. Then I forgot to go to my ultrasound appointment this morning so I have now rescheduled that for Wednesday afternoon. Before then, we have four medical appointments, at least. One this afternoon, two tomorrow, and two, including the ultrasound on Wed. BUt that doesn't count any more PT appointments my dd will need after today's initial appointment nor have I scheduled her allergy injection yet. Then I have two more on Thursday (probably three with the shot). and two more on Friday. That is what my life is like= appointments, more appointments, and even more appointments. It is what comes of having multiple chronic illnesses, pain, and having a child with multiple medical issues. MOst people have no understanding how tiring all these things are. It certainly doesn't help that most places other than my home are filled with the evil fluorescent lights. LED, halogen or plain old regular are all fine- banish the fluorescents. Christina, I understand about appointments. I am blessed in that my children are all healthy. I can't imagine having to juggle even more doctors appointments than I already have...it gets really old. I have the same issues with fluorescent light, and sunlight for that matter. Do you have lupus, too? UV light of any kind sucks the energy right out of me and leaves with a gross rash. It is really annoying because my husband and boys are very outdoorsy. They like to go camping, hiking, and sports, and most of the time I cant go b/c of my issues with the sun. I actually went with them on Saturday to this really cool place near where we live to go hiking. We were only out there a few hours and I was up all night with inflamed joints and in major pain even though I was exhausted. Does this happen to you, too? Link to comment Share on other sites More sharing options...
TravelingChris Posted March 4, 2013 Share Posted March 4, 2013 I don't know if I have lupus. I have one of the very specific markers for it (not ANA but one that is almost always only in lupus) but no one says I have that. I supposedly have RA and now have xrays and bone scans that prove that- joint damage which is bilateral to the same degree. But I also have Sjogren's and sun sensitivity is not uncommon with that. WHat happens with me in fluorescent lighted stores is complete exhaustion and muddleheadedness. I just hate it. I also get it from sunshine but I tend to stay out of the sun during the worse times of the day. Also, then I wear hats and put on sunscreen. I know I need to wear hats and sunglasses to the store. I just hate doing it. ANd what is worse is a number of stores have decided that unshielding the fluorescents is the way to go. Link to comment Share on other sites More sharing options...
Ann.without.an.e Posted March 4, 2013 Share Posted March 4, 2013 Chris, I have Sjorgen's too. Also, complete strangers ask me all.the.time if I have lupus. I have rosacea and when it flares it looks more like a lupus rash than rosacea. I often wonder if I have been misdiagnosed? I hate hats too but I must have good, polarized sunglasses or I cry tears my eyes are so sun sensitive. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted March 5, 2013 Share Posted March 5, 2013 I feel cruddy today. Yesterday was VERY stressful for me, with two babies that refused to sleep and screamed bloody murder for 6.5hrs straight, on top of me not sleeping well the night before. I needed to stress dose when I got home, and I did again this morning just in case. Thankfully they are better today, but I can barely stay awake and my stomach is really upset. :( I wish I could go home and sleep all day. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 5, 2013 Author Share Posted March 5, 2013 I'm sorry, Kara. Unfortunately I relate all too well. I've started up on my adrenal meds again (a lifesaver) but they only got me to 2:30 pm yesterday before I crashed bigtime. Then later I had to force myself to work on finances and as you know, that can be pretty stressful. Stupid body didn't sleep well last night because of the stress. I wonder how today will be. . . Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 5, 2013 Author Share Posted March 5, 2013 I hope you get good clear results, Sadie. Link to comment Share on other sites More sharing options...
TravelingChris Posted March 6, 2013 Share Posted March 6, 2013 Anyone have children with issues too? I took my youngest to her adolescent/young adult pediatrician (could they actually come up with a name for these doctors?) today for her physical. She did the usual checks but really doesn't see dd that much. Dd in fact goes to specialists all the time. Her round includes allergist, orthopedist, pt, psychiatrist and psychologist for testing. Link to comment Share on other sites More sharing options...
Cynful Posted March 6, 2013 Share Posted March 6, 2013 Hi Christina, Yes, I have two kids with issues. My oldest was born 10 weeks early and has many issues from that - we deal with learning issues, brain damage, ocd, anxiety and asthma. My youngest was born 5 weeks early and has some type of food issues going on. He's basically still on special elemental formula and now has swallowing issues due to not eating solids. He's also super hyper and even more so after getting food; he's downright mean then. So nothing major but still stressful. Hope everyone is doing ok today or feeling better. Here's to a good night's sleep for all!!!! Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 6, 2013 Share Posted March 6, 2013 I don't know if I have lupus. I have one of the very specific markers for it (not ANA but one that is almost always only in lupus) but no one says I have that. I supposedly have RA and now have xrays and bone scans that prove that- joint damage which is bilateral to the same degree. But I also have Sjogren's and sun sensitivity is not uncommon with that. WHat happens with me in fluorescent lighted stores is complete exhaustion and muddleheadedness. I just hate it. I also get it from sunshine but I tend to stay out of the sun during the worse times of the day. Also, then I wear hats and put on sunscreen. I know I need to wear hats and sunglasses to the store. I just hate doing it. ANd what is worse is a number of stores have decided that unshielding the fluorescents is the way to go. Is it the anti double stranded DNA marker? I have always had that marker. I know there is another one also, but I can't remember that one and I don't have that marker. Having a name for what is wrong is psychologically helpful, but treating lupus, and most other autoimmune diseases, is tough all around. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 6, 2013 Author Share Posted March 6, 2013 Anyone use adaptogens? I took my adrenal stuff at dinner as an experiment to see if it would help me get through Zumba better. But now I'm buzzing. Anyone want to lay bets as to whether I will sleep tonight? Link to comment Share on other sites More sharing options...
TravelingChris Posted March 6, 2013 Share Posted March 6, 2013 NO, I don't even know if they tested anti-DNA but if they did, it wasn't positive. I had a positive anti-Smith, which supposedly is a almost foolproof way of testing for lupus since it is never found in healthy people and is only found in lupus in 99% of the cases. WHat I don't know is if I have both lupus and RA because I don't think that lupus is supposed to cause joint damage and I definitely have that. That is what my rheumatologists for years said, that I had a type of non erosive arthritis. Well turns out they were wrong and various joints are showing damage. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted March 6, 2013 Share Posted March 6, 2013 Anyone use adaptogens? I took my adrenal stuff at dinner as an experiment to see if it would help me get through Zumba better. But now I'm buzzing. Anyone want to lay bets as to whether I will sleep tonight? Did you get to sleep? I can't take my meds in the evening, even though I am supposed to, b/c I can't fall asleep if I do. I already have insomnia, no need to add to it. LOL I will only take a dose in the evening if I had a REALLY stressful day and my body is in haywire due to it. Do you get that feeling? Like I just can't dissipate the stress, and my body is almost vibrating but not from a rush...like it just can't cope b/c it is incapable of producing adrenaline anymore. At that point, though, once I take my meds and my body is able to calm down, I just crash. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 6, 2013 Author Share Posted March 6, 2013 Very, very amazingly, I slept very well. Since I have sleep issues on a good day, this was unusual. It was also unusual because I was vibrating up until the point of bed. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 6, 2013 Author Share Posted March 6, 2013 How is it going for everyone? Link to comment Share on other sites More sharing options...
shanvan Posted March 6, 2013 Share Posted March 6, 2013 Did you get to sleep? I can't take my meds in the evening, even though I am supposed to, b/c I can't fall asleep if I do. I already have insomnia, no need to add to it. LOL I will only take a dose in the evening if I had a REALLY stressful day and my body is in haywire due to it. Do you get that feeling? Like I just can't dissipate the stress, and my body is almost vibrating but not from a rush...like it just can't cope b/c it is incapable of producing adrenaline anymore. At that point, though, once I take my meds and my body is able to calm down, I just crash. Interesting. You are describing a feeling I get occasionally at night. The official diagnoses I have are for fibro and hypo-thyroid. The hypo-thyroidism has been treated for the past 13 years. Fibro was finally diagnosed about 4-5 years ago. I often wonder if enough tests were done. I really don't think I want to deal with more testing though. I went so far as to have a lip biopsy done for Sjogren's and, as usual nothing shows up on the test, and then they tell me that doesn't mean I don't have it. Uggh! And my lip felt awful and I didn't eat normally for at least 2 weeks. (Doctor said it would take a few days to heal! Ha!) Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 7, 2013 Share Posted March 7, 2013 NO, I don't even know if they tested anti-DNA but if they did, it wasn't positive. I had a positive anti-Smith, which supposedly is a almost foolproof way of testing for lupus since it is never found in healthy people and is only found in lupus in 99% of the cases. WHat I don't know is if I have both lupus and RA because I don't think that lupus is supposed to cause joint damage and I definitely have that. That is what my rheumatologists for years said, that I had a type of non erosive arthritis. Well turns out they were wrong and various joints are showing damage. Anti-smith was the other one I was thinking of. Anti-DNA is usually associated with lupus nephritis, which I have. I also have the joint damage as well. I was told for several years that there was nothing wrong with the joints in my hands....basically that it was just pain associated with the SLE. Well about 18 months ago I presented with ulnar deviation in both hands and my thumbs are affected as well. That is when I was told I had RA since usually lupus is non-erosive like you were saying. So, if you don't mind me asking, what is your doctor treating you with. I didnt meet The requirements for the Benlysta trial. I've been on several biologics and methotrexate for the past 14 months or so. It is really hard to tell if it is really helping or not. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 7, 2013 Author Share Posted March 7, 2013 My question tonight is, do you have energy crashes with no warning? I will be doing fine (might be slogging through fatigue or pain but I'm still doing ok) and then wham! I can't even move. If you do, how do you handle it? How do you handle it if you are in the middle of driving? or your kids are still up doing things? Link to comment Share on other sites More sharing options...
Spryte Posted March 8, 2013 Share Posted March 8, 2013 My question tonight is, do you have energy crashes with no warning? I will be doing fine (might be slogging through fatigue or pain but I'm still doing ok) and then wham! I can't even move. If you do, how do you handle it? How do you handle it if you are in the middle of driving? or your kids are still up doing things? I have these. It is like someone hooks up a vacuum to my lower back and sucks all the energy out. At those times, I *must* get horizontal. As for handling it... Once upon a time, I did not drive long distances, for fear it would happen - but it was happening more often then. My doctor Rx'd a med that helped a bit, and I would take that very sparingly at times. For a few years, when DS was small, we had to have my mom and MIL alternate staying with us to watch DS. But that was years ago, and my episodes are not as frequent or severe now. They still happen, but they are more manageable. Now, I can sort of soldier through. I did have a recent round of episodes though, which my doc pinpointed as a POTS issue. I had forgotten how POTS can feel, really, as it had been under control for so long. She adjusted my POTS treatment a bit, and it seems to have helped. And you, Jean? How do you handle it? At times, I've thought that these energy crashes are the worst part of all of this... Link to comment Share on other sites More sharing options...
TravelingChris Posted March 8, 2013 Share Posted March 8, 2013 Andrea, I am currently on a half dose of Arava (10mg when the normal is 20 mg) and 400 mg of Plaquenil. I was only on Plaquenil for many years and seemed to be doing okay. Then I had to keep on going on steroids on and off too many times and when I moved to Florida, my rheumatologist put me on methrotrexate. I was on that for a few years and did feel better, However, I got a c. difficile infection at one time and then after I was hospitalized with an antibiotic resistant periorbital infection, I told my new rheumatologist to switch me to something else since I never wanted to go through something like that again. He put me on ARava and then also on Voltaren gel. But I then developed a DVT after I broke my leg and found out I had to be on lifelong coumadin, so no more VOltaren gel. I have decided to fire my rheumatologist here. (NOt the one who switched me to Arava) Tomorrow I will see a new rheumatologist who hopefully will at least double my Arava, if nothing else. I found out that I have arthritis in my cervical spine area and that is not a good thing at all. It needs to be stopped before I get paralized or something else drastic happens. I will see what this rheumatologist says. My other one here told me to move to Arizona. That is stupid since I also had it when I lived in CA, and in NM. Link to comment Share on other sites More sharing options...
somo_chickenlady Posted March 8, 2013 Share Posted March 8, 2013 Today is a bad day. I was hit by a proverbial bus last night after I got off of work. I felt fine right afterward, then when I was home I coughed a couple times, and within an hour I was coughing up a lung and felt horrible. DH had a bad cold last week, DS the week before, so I guess it is my turn now. Even with taking Ny-Quil last night, I woke up frequently feeling like I was choking to death on phlegm. It was horrible. Then today I felt like death, even though I doubled my meds. I had ZERO energy to do anything, and could barely keep myself awake. I would have called in, but the mom of the babies I nanny for is out of town for a funeral and I didn't want to bail on the dad. All I could do today was put the babies in a bouncy seat or on the floor and just stare at them. :( Then, every time they took a nap I took one also (with permission). I was so grateful when I was able to come home. My throat is killing me, I have zero energy, my whole body hurts, my head is so stuffed up, terrible cough, etc. Yuck. Can I go die now? Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 8, 2013 Share Posted March 8, 2013 Today is a bad day. I was hit by a proverbial bus last night after I got off of work. I felt fine right afterward, then when I was home I coughed a couple times, and within an hour I was coughing up a lung and felt horrible. DH had a bad cold last week, DS the week before, so I guess it is my turn now. Even with taking Ny-Quil last night, I woke up frequently feeling like I was choking to death on phlegm. It was horrible. Then today I felt like death, even though I doubled my meds. I had ZERO energy to do anything, and could barely keep myself awake. I would have called in, but the mom of the babies I nanny for is out of town for a funeral and I didn't want to bail on the dad. All I could do today was put the babies in a bouncy seat or on the floor and just stare at them. :( Then, every time they took a nap I took one also (with permission). I was so grateful when I was able to come home. My throat is killing me, I have zero energy, my whole body hurts, my head is so stuffed up, terrible cough, etc. Yuck. Can I go die now? Sorry to hear you are feeling so bad. I hope you get some of your energy back soon. Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 8, 2013 Share Posted March 8, 2013 Andrea, I am currently on a half dose of Arava (10mg when the normal is 20 mg) and 400 mg of Plaquenil. I was only on Plaquenil for many years and seemed to be doing okay. Then I had to keep on going on steroids on and off too many times and when I moved to Florida, my rheumatologist put me on methrotrexate. I was on that for a few years and did feel better, However, I got a c. difficile infection at one time and then after I was hospitalized with an antibiotic resistant periorbital infection, I told my new rheumatologist to switch me to something else since I never wanted to go through something like that again. He put me on ARava and then also on Voltaren gel. But I then developed a DVT after I broke my leg and found out I had to be on lifelong coumadin, so no more VOltaren gel. I have decided to fire my rheumatologist here. (NOt the one who switched me to Arava) Tomorrow I will see a new rheumatologist who hopefully will at least double my Arava, if nothing else. I found out that I have arthritis in my cervical spine area and that is not a good thing at all. It needs to be stopped before I get paralized or something else drastic happens. I will see what this rheumatologist says. My other one here told me to move to Arizona. That is stupid since I also had it when I lived in CA, and in NM. I liked and used the voltaren gel for a while. It caused my gfr (kidney function) to plummet, so I couldn't use it anymore. I have the same experience every time I try to use any type of NSAID, which stinks because they are helpful with my joint issues. That is crazy that it was found in your spine. Are they labeling it as anklosing spondylitis? I think that's what it's called anyway. My doctor has recommended I move anywhere north of here. I don't know how much difference, if any, it will make, but we are moving anyway....for different reasons though. I hope you find a good doctor. It makes all the difference. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 8, 2013 Author Share Posted March 8, 2013 I have these. It is like someone hooks up a vacuum to my lower back and sucks all the energy out. At those times, I *must* get horizontal. As for handling it... Once upon a time, I did not drive long distances, for fear it would happen - but it was happening more often then. My doctor Rx'd a med that helped a bit, and I would take that very sparingly at times. For a few years, when DS was small, we had to have my mom and MIL alternate staying with us to watch DS. But that was years ago, and my episodes are not as frequent or severe now. They still happen, but they are more manageable. Now, I can sort of soldier through. I did have a recent round of episodes though, which my doc pinpointed as a POTS issue. I had forgotten how POTS can feel, really, as it had been under control for so long. She adjusted my POTS treatment a bit, and it seems to have helped. And you, Jean? How do you handle it? At times, I've thought that these energy crashes are the worst part of all of this... If I'm driving, it is scary. My dd will kick the back of my seat to keep me awake if we are literally only minutes from home. Otherwise I will pull over and call dh. Fortunately that has only happened once and not recently. Most of the time it happens at home. I go to my armchair. And I don't move. I often can't even really talk. So my kids and husband leave me be for a bit to rest and then get me something to eat. If this happens, it can affect me for hours and once I'm awake again, I'm usually in a lot of pain. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 9, 2013 Author Share Posted March 9, 2013 Started taking adrenal supplements a couple of days ago. I'm playing with doses and timing. In doing some research, these same supplements lower blood sugar - a good thing for me but still something I need to monitor closely esp. when it comes to when I eat and exercise. Link to comment Share on other sites More sharing options...
eight_gregorys Posted March 9, 2013 Share Posted March 9, 2013 Started taking adrenal supplements a couple of days ago. I'm playing with doses and timing. In doing some research, these same supplements lower blood sugar - a good thing for me but still something I need to monitor closely esp. when it comes to when I eat and exercise. Jean, Can you tell me a little bit about adrenal supplements? I have had only had cortisol levels tested and honestly don't remember the numbers. My main struggles are with fatigue and pain. I'd love to hear about how these have helped you. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 9, 2013 Author Share Posted March 9, 2013 I'm taking http://www.naturalfactors.com/products/detail/4831/adrenasense It does seem to give me energy. It doesn't seem to affect pain. Sometimes it makes me feel jumpy and sometimes it doesn't. I haven't been consistent though on timing and taking it with or without food, though so I don't know how those things might affect the jumpiness. I need to start writing things down. I looked up each of the ingredients and they are listed as "adaptogens" that help the body deal with stress and help the adrenals to heal. Link to comment Share on other sites More sharing options...
Spryte Posted March 10, 2013 Share Posted March 10, 2013 If I'm driving, it is scary. My dd will kick the back of my seat to keep me awake if we are literally only minutes from home. Otherwise I will pull over and call dh. Fortunately that has only happened once and not recently. Most of the time it happens at home. I go to my armchair. And I don't move. I often can't even really talk. So my kids and husband leave me be for a bit to rest and then get me something to eat. If this happens, it can affect me for hours and once I'm awake again, I'm usually in a lot of pain. That does sound scary. :grouphug: Does it help at all if you elevate your legs above your heart? I seem to think that helps a tiny bit, though it might just be wishful thinking. I have been exhausted lately. We've had crisis after crisis here. DH was out of town, and DS had flu (and he has asthma), then DD had strep, now my mom is visiting and has pneumonia... DS then had hives from his antibiotic after he developed strep, too. It is like I am underwater, wearing a lead suit and trying to push through, and move. I can't seem to regroup enough to have a day with any energy worth noting. :( You know when your face looks like it's fallen, and there are deep circles under your eyes? That's me. It will pass, right? Link to comment Share on other sites More sharing options...
Spryte Posted March 10, 2013 Share Posted March 10, 2013 Today is a bad day. I was hit by a proverbial bus last night after I got off of work. I felt fine right afterward, then when I was home I coughed a couple times, and within an hour I was coughing up a lung and felt horrible. DH had a bad cold last week, DS the week before, so I guess it is my turn now. Even with taking Ny-Quil last night, I woke up frequently feeling like I was choking to death on phlegm. It was horrible. Then today I felt like death, even though I doubled my meds. I had ZERO energy to do anything, and could barely keep myself awake. I would have called in, but the mom of the babies I nanny for is out of town for a funeral and I didn't want to bail on the dad. All I could do today was put the babies in a bouncy seat or on the floor and just stare at them. :( Then, every time they took a nap I took one also (with permission). I was so grateful when I was able to come home. My throat is killing me, I have zero energy, my whole body hurts, my head is so stuffed up, terrible cough, etc. Yuck. Can I go die now? Hoping you are feeling better now! Or have someone home this weekend to pamper you. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 10, 2013 Author Share Posted March 10, 2013 That does sound scary. :grouphug: Does it help at all if you elevate your legs above your heart? I seem to think that helps a tiny bit, though it might just be wishful thinking. I have been exhausted lately. We've had crisis after crisis here. DH was out of town, and DS had flu (and he has asthma), then DD had strep, now my mom is visiting and has pneumonia... DS then had hives from his antibiotic after he developed strep, too. It is like I am underwater, wearing a lead suit and trying to push through, and move. I can't seem to regroup enough to have a day with any energy worth noting. :( You know when your face looks like it's fallen, and there are deep circles under your eyes? That's me. It will pass, right? Unfortunately, I do understand exactly what you are talking about with the lead suit underwater. :grouphug: My fatigue fits are more like narcolepsy. It doesn't seem to affect my heart rate. In fact, I've had visitors over, fallen asleep mid sentence, slept for about 20 minutes and then woken up and continued to talk. My friends are great - they just pick up a magazine and read until I wake up. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 11, 2013 Author Share Posted March 11, 2013 How was your weekend? And how has your Monday been so far? Link to comment Share on other sites More sharing options...
Spryte Posted March 11, 2013 Share Posted March 11, 2013 My fatigue fits are more like narcolepsy. It doesn't seem to affect my heart rate. In fact, I've had visitors over, fallen asleep mid sentence, slept for about 20 minutes and then woken up and continued to talk. My friends are great - they just pick up a magazine and read until I wake up. You have good friends. :) That's like what I experienced a few years ago - I mentioned it above - and it was terrible while driving, etc. It is less often now, for me. When DS was small, and I *had* to stay awake for safety reasons, I had an Rx for a med to keep me awake - I used it sparingly. Probably not the best way to go, if not absolutely necessary, but it helped. How do you all handle the very bad days, and homeschooling? Do you have a plan for the kids to school without you? Do you ever miss a day? Turn to edutainment? Set them loose with special sick-day books or projects? I find that as DS has gotten older, I have less prepped and ready to go for those rough days... He is not quite ready for truly independent work, but some of the things I used to fall back on seem a bit young now, so I'm looking for better ideas. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 11, 2013 Author Share Posted March 11, 2013 I had a very bad couple of years when dd was in 1st and 2nd grade. Ds was in 6th and 7th and was more independent. I hired a neighbor to come over 3x a week and work with dd but neighbor was a flake and only did the stuff that required no teaching work from her. Those were tough years and it affected dd negatively - in that she was a couple of years behind. But the good news is that we've caught up and she is now at grade level. Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 11, 2013 Author Share Posted March 11, 2013 You know you have adrenal problems when. . . you yearn for a hot flash just so you can raise your body temperature to normal! Link to comment Share on other sites More sharing options...
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