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Medical Forum / Diseases and Disorders / Lupus / March 2006Weight loss/Insomnia/Memory loss
Since I posted here last summer, I have finally gotten myself an appointment with a specialist in London and Guys And St Thomas's (the NHS works very very slowly) which I am very excited about as I know they have one of the best units for Lupus sufferers. Until I get to visit the consultant, can anyone shed any light (without blood test results!) on why I may have lost a massive amount of weight in the last 2 months? I have gone from a UK size 10/12 (US size 8) in clothing down to a UK size 6 (US size 4). I was always quite small in build but I have now gone smaller than I ever was before, so badly that people are making all sorts of scary comments about it - they think I'm bulimic or anorexic which I am not, even a whisper of a drug problem that I was horrified to hear. I am very hungry but once I start to eat, I can only manage very few mouthfuls before my body says stop. I'm hungry again after 30 minutes but go through the same routine of eating very little. Also I have been reading about other people with memory loss. I have been experiencing over the last year constant memory loss and a general 'fogginess' where I can walk in a room and not remember why, start a sentence and not remember what I was talking about or just totally forget what I was doing in the middle of completing a task at work. It can take me up to 3 days to type an email sometimes - it's just like my mind goes blank. I've taken to writing lists for absolutely everything otherwise it goes completely out of my head. I usually remember later but that is of no use to me at the time. Is this normal? the last thing is insomnia. I cannot sleep for anything. And I am so tired all the time. But get me in the bed and I'm staring at the ceiling for hours on end. I am not early stage SLE, I've been living with lupus for about 8 years now with virtually no support from the consultant I used to have, who could never give me any answers other than 'but you look fabulous'. It doesn't mean I'm not suffering inside! He should know that more than anyone! Has anyone found any supplements that help with any of the above? thanks... Mahogany x rest in peace J-Dilla who may have lost the battle with Lupus, but his music will live on to help others fight.... >Since I posted here last summer, I have finally gotten myself an >appointment with a specialist in London and Guys And St Thomas's (the >NHS works very very slowly) which I am very excited about as I know >they have one of the best units for Lupus sufferers. Yes indeed - although there are other centres with good reputations too. Be annoyed, but not surprised, if your second appointment also takes for ever to arrange. >Until I get to visit the consultant, can anyone shed any light (without >blood test results!) on why I may have lost a massive amount of weight >in the last 2 months? Only to say that "just because you have lupus, you aren't immune from everything else"! Have you discussed this with your GP? >Also I have been reading about other people with memory loss. [] It's very common :( >the last thing is insomnia. I cannot sleep for anything. And I am so >tired all the time. But get me in the bed and I'm staring at the >ceiling for hours on end. And so is this! >I am not early stage SLE, I've been living with lupus for about 8 years >now with virtually no support from the consultant I used to have, who >could never give me any answers other than 'but you look fabulous'. That's almost a symptom - "I look so well, I feel so ill". > It >doesn't mean I'm not suffering inside! He should know that more than >anyone! Yes, so he should.  SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! >>Since I posted here last summer, I have finally gotten myself an >>appointment with a specialist in London and Guys And St Thomas's (the [quoted text clipped - 34 lines] > > Yes, so he should. My rheumatologist says" well you have lost 20 lbs. Your makeup is perfect, I know you too well." The worse you feel, the better you look" It is true. wende Hi Mahogany (cool name), I have been a lupus sufferer for 30 years (looking back). I am a medical transcriptionist, so I have heard through headphones what doctors think about a lot of things. The appetite thing sounds like a stomach problem. Like gastritis, or just stomach irritation.. I had that and felt quit similar to the way you feel. do you take any NSAIDs? That can cause stomach iritation. Maker sure you have your thyroid checked--T3, T4, TSH, and Anti-thyroid antibodies. I have Autoimmune Thyroiditis, and that can really make you feel bad. Your whole paragraph on memory loss. I have all that, and have had it bad for about the past 10 years. I am highly intelligent, which is where I derive a lot of my self-esteem, so this is a real bummer. Do you get headaches? I had headaches, I would say at the time "every day"--but really it was just constant. I had lupus cerebritis, and when I got onto some Prednisone to calm the inflammation the headaches went away. But I still forget what I am doing, what I am writing on the mail. I save all my letters so that I can remember what I said to people and who I said it to! So you guys who have wanted to talk to me by Messenger or Chat... that is why I don't do that! My whole head get wrapped around itself <g> Have you seen the move "Memento"? Where he has his information tattooed all over his body? Well, I'm gonna be up for that, soon, I think. Insomnia can screw up your cognitive functions really bad, apart from anything else Hmmm.... tick--tick--tick....I'm thinking... Insomnia, weight loss, confusion, these could be signs of clinical depression. Depression does not have to be in your mind, as in "oh I am so sad"--often it is a reaction of the body to long-term pain or chronic illness. If the dock prescribes something like this, it may be really helpful. There's my $0.02--from personal experience I hope things go really well for you, Mary. Neither Mary nor Pigmet are licensed medical physicians, But we do a lot of thinking in our spare time. :-) > Since I posted here last summer, I have finally gotten myself an > appointment with a specialist in London and Guys And St Thomas's (the [quoted text clipped - 35 lines] > rest in peace J-Dilla who may have lost the battle with Lupus, but his > music will live on to help others fight.... Mair Great explanation! Nicole > Since I posted here last summer, I have finally gotten myself an > appointment with a specialist in London and Guys And St Thomas's (the [quoted text clipped - 24 lines] > tired all the time. But get me in the bed and I'm staring at the > ceiling for hours on end. Hello Mahogany, It sounds to me that your stomach has shrunk from not eating much. That can be depression or anorexia. It can also be from thyroid problems. There's other things as well that can cause weight loss, so you really should go see a GP and tell him/her what's been going on. Hopefully he'll run the tests that Mair mentioned. When I was diagnosed with Hashimoto's thyroiditis, I d lost a lot of weight, looked haggard, tired and rundown but what was weird (or maybe not) I was always ravenous and ate a lot but I was also a busy-beaver, too much energy, not enough sleep, worked hard, played hard, was up and down for sleep. So once diagnosed, they also put me on various medications and finally settled in on Elavil. That helped with sleep and sure helped me gain the weight back (helps some with appetite). If your GP will allow, ask to try it, while s/he gets the thyroid and maybe a few other tests going. Do go see a GP as soon as possible and work with that doctor. Also stay with us, if you are able. Congratulations on getting an appointment with a lupus specialist at the London and Guys It's sure discouraging having to wait for specialists, isn't it? Maybe this is the start of better times for you. I sure hope so. Let us know how you make out with the GP. Hugs J I also have "Hashimoto's," and as it was explained to me, the lymphocytes infiltrate the thyroid gland trying to destroy it. Even though the gland is being destroyed, and you would think "oh no! where is all this energy coming from?" It is coming (again as I understand it) from the thyroid cells. As the leukocytes attack the thyroid cells, and they die, they release the thyroid hormone contained in them. That is why with thyroiditis you can go from high energy to very low energy in quite a short period of time. (I envy you guys with energy, because I have what I call "persistent bathmat syndrome." I just lie around feeling all soggy, and if I get some extra energy, I will quivver and make tribble noises...) My little diatribes are certainly open for criticism and discussion. If my info doesnt make any sense.... please tell me so.... Good luck! Mary >> Since I posted here last summer, I have finally gotten myself an >> appointment with a specialist in London and Guys And St Thomas's (the [quoted text clipped - 53 lines] > Hugs > J > I also have "Hashimoto's," and as it was explained to me, the lymphocytes > infiltrate the thyroid gland trying to destroy it. Even though the gland is [quoted text clipped - 4 lines] > from high energy to very low energy in quite a short period of time. (I envy > you guys with energy, Well, that was almost 30 years ago. Things have changed about the energy.:) And I'm probably euthyroid by now -- the thyroid medicine turned it off from producing thyroid hormones. I think BJ's on thyroid medicine as well. Aren't you? > because I have what I call "persistent bathmat > syndrome." I just lie around feeling all soggy, and if I get some extra > energy, I will quivver and make tribble noises...) That must be interesting to hear :) > My little diatribes are certainly open for criticism and discussion. If my > info doesnt make any sense.... please tell me so.... I wasn't criticizing your post - just giving my own input. (which closely matched yours) hugs J > I wasn't criticizing your post - just giving my own input. (which closely > matched yours) I know--I was not talking about you, I was just talking in general. I always like to leave room for debate! I am sorry, I can't reproduce the "quivvering bathroom mat" noise in this medium. Any imaginary cringing bathmat noise you could come up with would be suitable, I'm sure. Mair >> I also have "Hashimoto's," and as it was explained to me, the lymphocytes >> infiltrate the thyroid gland trying to destroy it. Even though the gland [quoted text clipped - 31 lines] > hugs > J > I always like to leave room for debate! I wish there was more. Not a word since from Mahogany > I am sorry, I can't reproduce the "quivvering bathroom mat" noise in this > medium. Any imaginary cringing bathmat noise you could come up with would > be suitable, I'm sure. My bathmat's shedding...the rubber underneath. There's so little rubber left, I can't even get a squeak. :p I suppose they're not expensive. I've got a 10 page imaginary list of things (I need) that are not too expensive. Something else always takes priority. So I guess I'll have to imagine... It would be nice to start fresh: new bedding, sheets and towels, new dishes, new clothes, new footwear, new computer, new car oopsie and throw almost everything old out. The only time that ever happened was when I got married and that was a long time ago. For many there's an income curve, the income increases, so one can buy more and then responsibilites set in and the money doesn't go as far, and then if chronic illness sets in, there's less money, so the curve takes a nosedive, eh? J [ >My bathmat's shedding...the rubber underneath. Ours does that. No obvious cure! >There's so little rubber left, I can't even get a squeak. :p >I suppose they're not expensive. [quoted text clipped - 7 lines] >clothes, new footwear, new computer, new car oopsie >and throw almost everything old out. Yeah, but if you do that you'll find that everything lasts for the same number of years** then breaks, so in 2, or 7, or 20 years you have to have another "start again"! ** do you find that most gadgets last until the day after their guarantee runs out? SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > >My bathmat's shedding...the rubber underneath. > > Ours does that. No obvious cure! Hot water and dryers take a toll on rubberized mats. So maybe the cure is not to clean them. LOL > ** do you find that most gadgets last until the day after their > guarantee runs out? Gadgets? What about cars and all the big stuff? Seems everything today only lasts until the guarantee runs out. And most of the big stuff has pro-rated guarantees. So that 20 year roof gives up at 18 years and all you get is $200 if you can find the blasted original receipt for the shingles that cost thousands of dollars. My two cents in USA dollars. LOL Bev >> >My bathmat's shedding...the rubber underneath. >> [quoted text clipped - 11 lines] >$200 if you can find the blasted original receipt for the shingles that cost >thousands of dollars. Reminds me of once asking a garage "What does it mean in the handbook for my new car when it says 'the water pump is sealed for life'?" To which he replied "It means they've taken away the hole for adding grease, so it lasts until it breaks, then you bring it back to us and we fit a new one!". SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! That is until my husband drills a hole in it and refills it. They are doing that to car batteries. No more refilling the water in batteries. Husband swears they do it to sell more batteries. Bev > >> >My bathmat's shedding...the rubber underneath. > >> [quoted text clipped - 17 lines] > grease, so it lasts until it breaks, then you bring it back to us and we > fit a new one!". > Hot water and dryers take a toll on rubberized mats. So maybe the cure is > not to clean them. LOL yep, that's probably the solution LOL J > ** do you find that most gadgets last until the day after their > guarantee runs out? guaranteed to, although I have items here that have lasted <knock wood> 20 or more years. Some almost 30 years. I'm "nursing" them along. J Hello! I have "diagnosed" SLE for over 8 years. Last year, I suddenly starting dropping weight, totaling about 40 pounds. I went from US size 6/8 to a 0. Yes - I got all kinds of comments. My personal favorite is "Eat a cheeseburger!" Co-workers did accuse me of being anorexic as well. It is amazing to me how people can be so hateful to your face when it is about being THIN. Years ago, I was heavy, and I never heard the comments spoken directly to me as I have now! Interesting! The doctors could not determine WHY I was losing weight. I must admit, I am glad I was losing, rather than gaining as gaining would put more strain on the body, joints muscles, etc. Anyways, you did not mention what medications you are taking. I have developed an ulcer as a result of being all the medications for the past years. Sometimes I do not feel like eating anything more than dry cheerios! As far as being tired all the time - my doctor put me on PROVIGIL. It is a Anti-narcolepsy medication that has worked miracles for me. I have to take it early in the day. It has really changed my energy levels! I highly recommend! Good Luck! Lisa > As far as being tired all the time - my doctor put me on PROVIGIL. It is a > Anti-narcolepsy medication that has worked miracles for me. I have to take > it early in the day. It has really changed my energy levels! I highly > recommend! Hi Lisa, she did not mention fatigue, although she may be experiencing that as well. The problem as I understand it, she lies awake at night, unable to get to sleep. So either her thyroids zoomed up, she's depressed or she's drinking too much caffeine J You are right! Maybe the fogginess is in part due to fatigue.... who knows> I do know that if she is NOT sleeping at night, then she MUST be experiencing some side effects from that during the day - probably napping, fatigue???? I know when I am tired, then the "foggy head syndrome " is worse! Then it all feeds into a vicious circle. I used to nap during the day, etc. I still stand by the Provigil drug. I am not sure if it will help in her situation though. >> As far as being tired all the time - my doctor put me on PROVIGIL. It is >> a [quoted text clipped - 12 lines] > caffeine > J > Since I posted here last summer, I have finally gotten myself an > appointment with a specialist in London and Guys And St Thomas's (the [quoted text clipped - 35 lines] > rest in peace J-Dilla who may have lost the battle with Lupus, but his > music will live on to help others fight.... Hi Magnolia It took 3 years of testing before I got the diagnoses of lupus and had a miserable time. With the help of plaquinel and prozac and prednisone it is manageable. Prednisone does make you hungry and you gain a lot of weight. You get a moon face that makes everyone tell you how well you look. It also gives more energy and also feel sharper mentally. It is only used when you are having a flare but it gets you through the really bad times. Good luck with your visit with the doctor. Be sure to write down all of your symtoms and hand it the doctor so each symptom will be discussed...........ruth Prednisone does make you hungry and you gain > a lot of weight. You get a moon face that makes everyone tell you > how well you look. It also gives more energy and also feel sharper > mentally. It is only used when you are having a flare but it gets > you through the really bad times. I have been on prednisone CONSTANTLY for 8 year. I wish that wasn't the case as I cannot get below 8 milligrams. Avoid it at all costs! > the last thing is insomnia. I cannot sleep for anything. And I am so > tired all the time. But get me in the bed and I'm staring at the > ceiling for hours on end. Hello Mahogany, Are you giving yourself some "wind-down" time? (relaxing bath, reviewing the day, making mental notes of things you accomplished, and making real notes of things still to be done or things bothering me). Sometimes taking it off one's mind and putting on paper helps with sleep. You can look at the paper in the morning to refresh your memory and do what you can, then repeat at night, review what was done and what's still to do, put on fresh paper, and so on, and so on. I also keep a running list of groceries, so if I notice something getting low, I note it ASAP and add to it, as each day goes along. The other thing is going past one's sleep point. If I stay awake beyond 11 pm, I have an awful time getting to sleep. I must be in bed by 10 and relaxed or I have difficulty getting to sleep. Just wondering if you have a "sleep routine" that you're following? J > Hello Mahogany, > Are you giving yourself some "wind-down" time? ..... > Just wondering if you have a "sleep routine" that you're following? > J it's really weird because regardless of how tired I am, I just can't fall asleep as soon as my head hits the pillow. It's like my body knows I'm putting it to rest now and it rebels! All this nervous energy bursts out from nowhere. I now have a VAST DVD collection as I sit up and watch those or do research on the net to pass the time... I've decorated my house all night (stripped the walls, painted, the works), networked my whole house, built furniture, even started making music... anything to use up this energy...! I know this doesn't make sense to you guys reading, but I am so so tired but find it easier to just DO something rather than lay there and do nothing, getting agitated because I'm not using all this nervous energy and I don't know where it comes from because it's not there during the day, when I'm more likely to be sluggish. The allnighters can go on for about 5 days before I actually get some sleep which lasts longer than a couple of hours. As for winding down time, I fall asleep on the train on the way home from work some days (how unsightly!) and say to myself I'm going straight to bed when I get home. I get home, my eyes are blood red from being so tired, I start to run a bath, but then I'm wide awake. so sometimes I leave out the bath thing and slowly and quietly get myself ready but as soon as I lie down, wide awake. Tried hot milk, tried herbal sleeping pills (that just made me twitch and itch alot), all types of foods and supplements but nothing works, it's like my brain just starts going and I can't stop. Everyday i fill out a whole notepad with stuff I have to do throughout the day but it really is getting worse as I'm now forgetting what it is I wanted to write down in the time it takes for me to get the notepad, which usually isn't more than a short step away! (I have 3 scattered around the house and I've just bought one to throw in to my handbag) I'm only 30 but I feel like I'm on my way out! Like Mary said, it's just like that movie Momentum - I stop short of tattooing everything on me but if my memory keeps going like this I'm going to have to start soon. As a good example it has taken me 3 days to reply to this post. I start, then I remember something I should have done, say, 2 days ago, start to do that, then forget what I was doing when I remembered to do this other thing!!!! I had a performance review at work, had everything written down that I was going to confront my manager with, then couldn't find the notes I had written and as a result, didn't manage to air any of my views as I forgot everything - it all came back later that night which isn't helpful. I could give you a million examples It's all driving me crazy but it's giving everyone else a good laugh as they know exactly what I'm like about other people forgetting things or not paying attention. It's one of my pet hates! Now they can get their own back on me (just that it's actually quite serious underneath it all - but you gotta keep laughing right?) > it's really weird because regardless of how tired I am, I just can't > fall asleep as soon as my head hits the pillow. It's like my body [quoted text clipped - 7 lines] > just DO something rather than lay there and do nothing,[...] (just that > it's actually quite serious underneath it all Well, you wore me out, just reading about it and it is quite serious for a person with Lupus. Sounds like you're "dancing as fast as you can to prevent a disaster, but spinning your wheels at the same time" - going nowhere (good for you). BTDT - burned myself out, several times, over the past 35 yeas. Is it time to ask for leave of absence (due to medical or personal reasons) from work? Or apply for disability (with help from a doctor) ? And only work part-time, as allowed by disability rules. A lot of people with Lupus need naps during the day and full sleep at night. I just don't know how you do it and worry that you'll end up crashing in hospital if you don't make changes. I'll leave this with you to think about .. Hugs J J has a good point. I too have been on steroids constantly for 8 years. I take them early in the morning. at the very first they did keep me awake but soon after I had opposite reaction as I do to most drugs. They do control my Lupus but I do not grow hair or have over amount of energy. I have had some severe problems so had to stop work about 3 years into my dx of Lupus and it did actually help because if I can nap in the day time I will be more apt to sleep at night. So J has a good point on that one. I have to eat small meals since last May I have lost 33 pounds. But you described it perfect I think I am starving and then after a couple bits that's it then 30 mins. later I am hungry. So I gave up and i cook for my Hubby eat what I can of that then I have a bowl of good cereal or a small salad if I think my tummy can handle ot or a tuna salad maybe some fruit. Just whatever sounds good. The fog is defiantly Lupus one of my first symptoms I would be out driving some where like my own neighborhood and for just like 30 seconds not know where I was nothing look familiar bad bad feeling. I forgot to pick my son up from school one day he was in 7th grade and called and said did you forget something mom? I hate foggy makes you feel stupid. I hope you find some answers. This is such a frustrating disease. Cindy W. onward through the fog..... > > [quoted text clipped - 30 lines] > > well folks, after my first visit to St Thomas', the doctor (who might I add I found to be the coldest, most sarcastic, mean doctor I've ever encountered - think 'strict headmistress') who i won't name as we may have just gotten off on the wrong foot, suspects Hughes Syndrome may be to blame for some of the things wrong with me... fingers crossed - on the one hand, I want it to be so I can start treating these symptoms instead of keep getting tested and tested (like I have been since the age of 6 - it took 5 years to get an arthritis diagnosis and a further 10 more years to get a lupus diagnosis!), on the other, I don't want anything else to be wrong! So, more tests, mri scans, keeping diaries - it gets so boring even if it is necessary! I'll tell u something, I can't even book a decent holiday due to doctors appointments for this or that or the other... I'm sure most of you understand what I mean! I have to plan my life around this illness and it's driving me insane! After my rant, have a good Saturday all! > well folks, after my first visit to St Thomas', the doctor (who might I > add I found to be the coldest, most sarcastic, mean doctor I've ever [quoted text clipped - 13 lines] > and it's driving me insane! > After my rant, have a good Saturday all! Hello Mahogony, It's okay to rant here. That's what we're here for; reading, understanding and caring. I sure hope that was a glitchey day for the doctor. I know what you mean, some can be very "biting" with their unbedside manner. It surely doesn't take them a lot to put a light hand on the arm or the shoulder and say "I'm sorry you're going through this; I'll try to help you out", but no, not many do it. I'm from Canada and we don't always have the choices of "choosing" our own doctors, so I have to bite my tongue a lot - keep from talking back at them. Here's hoping he gets to the bottom of things and helps you sort some things out or at least, follow you carefully and help, where he can. I don't post much these days (lurk=read more), but I'll be here for you. Hugs J |
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