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Polymyositis
by plaxie Dermatomyositis is a rare autoimmune disease whereby the body attacks itself, in this case mainly large muscles and the skin, though it can also attack the lung and throat muscles. While the cause is unknown it is felt that it can be triggered by a viral infection. On my 50th birthday I developed gastroenteritis (norovirus) it ... only lasted 1 day but I never really recovered from it, I had no energy and no appetite. About 2 weeks later I developed a rash, intensely itchy on my left knee which, being me, I decided was a post viral rash and could wait. As it was coming up to Christmas I ignored it until the 28th. Meanwhile the itch had spread to my chest, back and legs and it was purple in colour! My GP asked questions about muscle strength which at the time was ok, I was told it was Urticaria which I knew it wasn't (I was a nurse). A few days later I found I was struggling to wash my hair, I couldn't keep my arms up for the length of time required, I was struggling to get out of my chair, I had pains in my thighs but these were spasmodic and changed places, making me feel it was all in my head. Within a week I could not 'remember' how to kneel down instead I had to pull myself down using whatever furniture was available, then I couldn't manage to get downstairs but could climb stairs, at this point I really thought I was going mad. I visited a friend in the dermatology clinic who took one look and advised me to get my GP to refer me to a dermatologist. I got an appointment about a week later, usually gauntlet of blood tests, a skin biopsy and a muscle electro conductive test (not nice!) The skin directly below my nails was very red and this alongside the other tests lead to a diagnosis of Dermatomyositis. I was started on medium dose Steroids (30mgs) and these improved the muscles but not the skin or the itch. The Dermatologist wanted to start Azioprine or Metheltrexate (both oral chemotherapy drugs) but as there is a link between Dermatomyositis and cancer he felt a CT scan was needed. Surprisingly this showed an Ovarian cancer of which I had no symptoms! I will try and stick to the Dermatomyositis in an attempt not to make it too complex. My Steroids have been up and down ever since; the lowest I have managed is 4mgs. I have a great variety of anti histamines which provide psychological help if nothing else. They gave me an anti malarial drug which is supposed to work well for the skin but I was allergic to it, yes you guessed right, total body rash with itch! I had a course of Immunoglobulin therapy (given intravenously over 5 days) this worked brilliantly but unfortunately only lasted 6 weeks and really wasn't worth it, because it showed me how restricted my life had become and I really struggled as the effect wore of within a week. My oncologist has discussed Azathioprine/Methotrexate with the dermatologist as it would appear I can take these, at least while I'm not on chemotherapy. So hopefully these will start within the next few weeks, if these give less than satisfactory results the next suggestion is the Immunoglobulin therapy but with monthly top ups. At present my skin has improved (40mgs steroids now cutting down) I have had 'ulcers' body wide, my scalp flakes like there is no tomorrow and my hair is thinning, my thighs, knees, elbows and arms are now permanently purple which indicates a chronic disease process. Muscle wise I can still walk admittedly slowly and not far, I have trouble getting out of bed and find it very hard to roll over in bed. I cannot kneel, well I can, but I can't get up again so I don't try anymore. I find it difficult to get in/out of a car due to the height of the sill. I try and do as much as I can as I feel the muscles will only deteriorate if not used, my recover time is also extended. The itch is horrendous and has been so since 2009. Despite my complex history and that fact that the cancer will kill me (eventually) all my symptoms come from the Dermatomyositis despite this I remain upbeat, my attitude is that they are others much worse off than me Read the complete review |
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Hyperemesis Gravidarum
by Mama-Q ****************** WARNING: I just want to put a little warning here that this is a review about Hyperemesis Gravidarum. This is a highly complex and rare condition that effects pregnant women. Although I will try not to be too graphic in my review I would avoid it if you're squeamish reading about throwing up or ... sickness. Anyone who has been through pregnancy and suffered with sickness will tell you it's no walk in the park. 'Morning' sickness is a misleading term as I found the nausea and sickness lasted all day long and all night long in my first pregnancy with my son, it was dreadful but it wasn't something I felt I couldn't deal with and near the end of the sickness I could throw up and then get on with my day, feeling quite normal and not at all nauseous. I hadn't expected to be completely knocked over with my second (current) pregnancy and was seriously ill before I even took a test - I actually believed I'd caught the Norovirus and with my husband having it this seemed a likely outcome. After weeks of non-stop throwing up 24/7, night sweats, weight loss, eating two meals within two weeks and not touching any of my Christmas chocolate I knew something else might be the matter. On the 2nd of January I got my answer: I was pregnant. 'Okay,' I thought to myself, 'but surely it shouldn't be *this* bad?' I shrugged my shoulders, decided it was both a mix of Norovirus and morning/all day sickness and didn't think too much about it. My husband's holiday period ran out and I suddenly found myself going from barely able to cope to being completely unable to function. I would fall asleep without remembering I'd fallen asleep, while my son (2 years old at the time) would raid the fridge and cupboards for food. I'd be in bed, in a bad way, trying to hold back the screams of pain while my son ran from room to room to find 'help' for me. Whenever I was throwing up he'd rub my back, hold back my hair and ask if I wanted something to drink. A few times he'd say, "Spit it out, mummy!" very encouragingly ;). We used the iPad for watching Netflix while I slept and all in all, while it was at it's worst, I tried to do my very best. Well sometimes when you're so ill your 'best' isn't that great. There was one week where I literally could not stop throwing up. I couldn't eat or drink because everything I put past my lips made me throw up. I was constantly sleeping, or feeling on the point of passing out. After day two of not eating I was still throwing up my digestive juices, retching even when nothing was coming up. My ribs were constantly in agony, as well as my stomach feeling like it was being twisted from inside. I didn't care about food and in fact the smell or sight of some foods would have me running to the loo to throw up. After the first few days of this misery I began to become so weak that I had to have a bucket to throw up into because going backwards and forwards to the toilet 20+ times to be sick was getting tiring. My husband tried his best to get me to eat; buying foods that were easy to eat, things I usually enjoyed eating, buying me 'nice' drinks but nothing appealed to me. My stomach was empty, but I didn't care. I was in agony day and night and because I had to look after our toddler, who stopped napping and sleeping regularly at night, I couldn't properly rest. Now there were times when I thought I was 'getting better', usually a few days or a day of respite between throwing up and being in 24/7 agony, and I'd manage a meal or two and be able to have a few sips of liquid but mostly I'd feel completely nauseous and weak. Once I began to break the news of my pregnancy to various people they were able to help here and there but the day to day running of things was, and still is, in my hands completely. Now normally this shouldn't phase people - not that it would drive you to tears, anyway - but throw a complex and rare pregnancy related condition into the mix and it will completely swamp you emotionally and physically. It doesn't help that my parents live over 6 hours away and that my in-laws are only available on the weekends and evenings (and in the evenings it's strictly emergencies only, like going to the hospital) so that support network for me doesn't really exist. I also find it extremely difficult to ask for help in the first place unless I am in need of a hospital admission - even with a hospital visit I will take my son along and if the hospital would allow it I'd take him in with me. Every day I would cry and beg my husband not to go out, to take a sick day himself so he could take care of us. On the main every day was terrible. I didn't feel depressed or emotionally sapped but physically I just felt so unable to do anything without falling asleep or throwing up. One day things took a turn for the worst when I couldn't hold down a sip of water. I hadn't managed to eat in days and I quite honestly didn't care. My husband kept insisting we go to the hospital if I threw up once more and when I began to retch he immediately phoned his parents to come and take us to the hospital - they drive and we don't own a car/drive. My MIL suggested we call the hospital/NHS24 first so that we didn't have to wait around for hours to be seen. NHS24 were brilliant and made an out of hours appointment at our local hospital for me. I waited twenty minutes past my appointment time and was seen by a lovely, fairly young looking, doctor who was concerned about everything she tested; my pulse was unusually high, my urine was full of ketones and she didn't 'like the look of me.' I was severely dehydrated and although I was feeling better she wanted to admit me to hospital. We chatted about my general health up to becoming and during my short pregnancy to that point. I hadn't had any diarrhoea, my abdomen wasn't hard, I wasn't taking any medication to explain the sickness and my body weight had dropped considerably. I'd also been sick very, very early on in this pregnancy and didn't develop sickness in my first pregnancy until 9-10 weeks. Basically it felt like 'something more than' just morning sickness. I really, really didn't want to be admitted to hospital because I wanted to be at home with my son. I was also starting to perk up and feel a lot better - I even managed to slurp down some water and to keep it down in the presence of the doctor. She prescribed some pregnancy safe anti-sickness tablets and rehydration sachets but insisted I come straight in if I kept being sick. With the promise I would do that we went home where I threw up several hours later. I threw up once more that next morning but I knew all I needed was to sleep and I'd be feeling much better. When I didn't improve that next day my husband proposed we head back to hospital but after I was able to keep down a bowl of cereal I convinced him that I was getting better. Now I HATE hospitals with a passion, they put the fear into me and my blood pressure rises the minute I step into those places. They make me nervous and anxious at the best of times so I really, really wanted to avoid going there again...however if I hadn't got better after eating then I wouldn't have thought twice about heading back. I may hate the places but they're the best place to be when you're so ill - rather that than dead, right? The anti-sickness tablets started to kick in for me but they weren't a miracle cure. I was still throwing up and still not getting any relief after throwing up. However the tablets meant that I was only throwing up 4-5 times a day rather than 20+ times a day. The rehydration sachets tasted like crap but they built me up again after a particularly bad spell where I lost a stone in three days. However the tale doesn't end there, oh no. While my sickness lessened and the pain subsided somewhat there are still days where my stomach feels like it's going to erupt due to the agony of the stomach cramps I'm feeling. Quite honestly I'd rather be in labour - the pain was/is definitely comparable if not worse. After my trip to the hospital it was arranged that my mum would come down for a few weeks to look after the toddler and well to look after me, I suppose. I'm not a very good patient, though, and I tend to do everything for myself anyway but it did mean that if I should fall asleep randomly that someone could be here to oversee my son not electrocuting himself or juggling knives. Well when my mum got here I seemed to improve - and this is the trick of HG just when you think you're getting better or you're improving it will throw you a curve ball; a sickly, crampy, unrelenting curve ball at that. On one of these sick days I threw up in the morning, didn't eat much all day and foolishly decided it would be a good idea to get 'fresh air' and head out to our local Morrisons for a shop. Well I began to feel very, very, very crampy and then very sick indeed the whole time we were out. When we got to the check outs I scanned the seating area, which was occupied by a bunch of children, and decided I just needed a drink of water and I'd be fine. I asked my husband to get me some water quickly and told him I felt like I was 'going to pass out.' Suddenly I began to feel very disorientated; everything around me became a big blur and all I could feel was the blood draining from my body. Now I have felt this way before, many years ago in my first pregnancy, and I decided I just needed to ride out this feeling, throw up and I'd be fine. Apparently while I was thinking all of this I was also stumbling all over the shop, trying to clutch any surface to steady myself meanwhile my lips matched the colour of my face; a deathly white. Right after my husband made a joke about me being drunk I felt my whole body flop and suddenly I was surrounded by people, staring down at me. I'd lost consciousness and fainted, right in the middle of the shop. There was a lot of drama going on while I passed out that I hadn't been really aware of and to be honest I wasn't really sure what had happened; I believed I'd tripped over something or I'd lost my balance. I wasn't really embarrassed as it's not something you can control but it was a horrible feeling and I felt pretty dreadful for the rest of the day. This is all the 'fun' that comes along with Hyperemesis. Along with throwing up, fevers, fainting, starvation, very painful stomach cramps, weight loss and unable to live a normal life there are other symptoms I've been accustomed to such as crumbling teeth. On the left side of my mouth one side of my molar is non-existent as it crumbled to pieces one day without me even noticing. I'm just praying and hoping that no more teeth decide to crumble in this way as post pregnancy I'll have to live with this consequence - the cramps and sickness I can just about handle but I do like my teeth *in* my mouth. So, onto the stats of this condition. It's reported (though I don't know where it's reported as I've just picked these stats up from Wikipedia) that 80% of pregnant women suffer with vomiting, it's a very common occurrence in pregnancy, but HG, or Hyepremesis as I call it (because I can't pronounce 'gravidarum' haha) is rare. So rare in fact that only a tiny 0.3-1.5% of pregnant women will suffer from the condition. To break that down it's about 1 in 100 pregnant people that will suffer from Hyperemesis, at the higher end of the statistical scale. It shows you that HG is indeed a very rare condition and isn't something that is worth worrying about if you're thinking about children. By all means factor it into the equation, after all it *could* happen, but it's worth remembering it's a very rare condition and effects a small percentage of women. I feel that awareness of the condition is lacking. In America home care nurses can be provided for HG sufferers so that they can be given IV fluids at home yet in the UK a hospital admission has to be made for an HG sufferer to receive IV fluids. I'd imagine that a home care nurse is a saving to the NHS as hospital admissions run into the hundreds per day, especially with IV fluids and anti-emetic medication being administered. It would also mean that the extra pressure of worrying about childcare or being anxious about leaving younger children at home while you go into hospital (which was my fear) would be alleviated, though it would add the pressure of caring for children at home when you feel like death warmed up. There is also the fact that any time I've shared the fact I'm suffering from HG with anyone that they recount their own morning sickness stories. A few times I've actually said, 'Oh that does sound horrible but HG is actually more severe than morning sickness and being sick doesn't make you feel any better, in fact it makes you feel worse.' This isn't about competing with people but it's about making people aware that HG isn't 'just bad morning sickness.' Morning sickness is horrible, like I said, after all I suffered with it previously but HG is a whole other ball game. With HG you have the threat of going into hospital, of fainting at most opportunities, your teeth crumbling from their gums and then the worry that you may go into renal failure if things get really, really bad. Also if people don't seek medical assistance for HG then other conditions can arise; hypoglycaemia, anaemia, jaundice, malnutrition, B12 deficiency and the list goes on. Depression can also occur and it's no wonder, this condition is very depressing indeed and can lead you to thinking it will never end so while I haven't developed depression over having HG I can understand why others would. It's worth pointing out that depression is a symptom of the condition but that the condition itself isn't a mental one and it is indeed physical but depression is the effect of the cause, rather than being the effect of cause. As for the cause itself...well there aren't really any clear conclusions drawn on that one. Some theories suggest that HG is caused by genetics, body chemistry and overall health. I've even read theories on body weight; if the woman is over weight before her pregnancy she is more prone to HG and then on the flip side the same is theorised about under weight women. One theory I'm happy to go with - as it makes the most sense - is that the hormone produced during pregnancy (human chorionic gonadotropin, or hGC for short) produces an adverse reaction in the body when elevated levels are produced in the body. Increased levels of Estrogen are also assumed to be one of the causes of HG. To understand the cause would lead to understanding a cure or at least lead to preventative methods for pregnant mothers or those trying to get pregnant who have suffered with HG in the past. Little research has been done on HG but it is the second most common reason for hospital admission, with pre-term labour being top of the list, during the first half of pregnancy. I'd imagine this costs thousands on the NHS per year that they could potentially save if they were to carry out some research on the condition. Not to mention that it would improve the lives of the women suffering from this condition. Now I'm very glad that I didn't have HG in my first pregnancy because I am done with pregnancy and babies after I have this baby - I was done at two children anyway but HG has really hit the nail in the coffin for me. I couldn't bear to go through this again and put two children through it, too. I honestly do not know how some women have the strength to suffer through HG pregnancy after pregnancy. Once you've suffered with HG there is an 80% chance you will suffer with it again in subsequent pregnancies and so far every woman I've spoken to who has went on to have subsequent pregnancies has suffered with HG for each of those pregnancies. That isn't a chance I want to take to be honest because it is quite honestly a living hell and like I said if I become pregnant again (assuming I'm not a multiple pregnancy, I won't know until 18 weeks as the NHS is 'too busy' to scan me before that) I'd have two children to look after and a complex, rare, painful and debilitating illness to deal with. No thanks. As we plan on home schooling this isn't a viable option for me and it just doesn't seem fair to myself or my family so I am done with this pregnancy and HG has really hammered it home for me. However if treated early enough and managed correctly I'd imagine that although it would be terrible to go through HG again that it *would* be manageable. However I'm not one of these women that is happy with 'manageable' because there is the risk it could be more severe and that I wouldn't be able to cope and it's a risk I'm not willing to take or think about right now in the throws of HG ;). It *does* get better, believe it or not, but there is a lot that comes before that for any HG sufferer - as I've outlined here - and I suppose the reward of all this suffering is that you get a baby out of the deal and that's worth it in the end but while going through HG it's hard to see beyond the day to day management of the illness and all you really want is understanding and support. Read the complete review |
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Treatment options for psychological disorders
by cirsty For a lady who has a lot to say, I feel like I'm lost for words. I'm a mental health nurse (a newly qualified one, I received my BA in Nursing in November) and I've faced the difficult conquest of working towards 'fixing' someone. With physical illnesses, doctors will often research the illness, give them a tablet, review them and send ... them home. Obviously this isn't always an easy process but physical illnesses are much easier for the patient, the practitioner and society to deal with because the symptoms are mostly what we can see for ourselves like if you've got a rash, you can see it and identify it easily. If you've got a wound on your leg, you can see it and identify it easily. But what about mental health problems? You can't always see them and you can't always match the symptoms with a particular label. Is someone acting a bit weird or do they have schizophrenia? Are they crying because they have depression or are just feeling a bit sad? Identifying the illness is sometimes the biggest challenge, because people believe it will never happen to them or any of their loved ones and if it did, who can they tell? Will they be treated differently? How can they overcome the shame of being crazy, insane, mental? I've got 3 years of experience under my belt, granted it's student nurse experience but I've been incredibly lucky to be in the position where I can observe and communicate with people to get a holistic understanding of mental illness and how it impacts a person's life. I've researched and researched until all these fancy words were coming out of my ears and I finally found that balance between practice and theory. So I came up with this; a nurse's role in treatment and recovery is to acknowledge, listen, empathise and realise. Opening my eyes and realising just how horrible society can be to the most vulnerable has been the most important turning point in my career. I've had people sneer at my job claiming that all I do is work with the 'dregs of society' and been to hospital visits with patients on placement to see a doctor about their physical ailments and been ushered to a quieter part of the hospital incase this patient in particular 'kicks off'. Society views people with mental health problems as the unpredictable, the dangerous and the avoidables which really can impact a person's self worth and self esteem (understandably). There are members of our society who fail to comprehend that having a mental illness doesn't devoid you of being a human being and I think that's what's important for us to remember. Stigma is a huge, huge barrier to the recovery of someone with a mental health problem and there are ways that we can push this out. For example, why do we call someone who has a diagnosis of schizophrenia, schizophrenic? The person should not be named and shamed, labelled or owned by their illness, and defining the person by whatever illness they have is very disheartening and damaging to the person lowing their self worth. We can also demolish stigma by the use of education. There are so many misconceptions of mental illness it's exhausting, especially when I see the impact these have on people who have mental health problems. For example: Schizophrenia is not multi-personality disorder, it in no way shape or form means that the person transforms randomly into other people and atleast one of these alter egos is a mass murderer. Schizophrenia is a psychotic illness that can be characterised with hallucinations and delusions, and quite often a psychotic episode can be quite frightening for the individual. An eating disorder is not about losing weight to fit into a smaller dress, it's a deadly mental health problem that torments the sufferer's every waking thought and can come hand in hand with depression and other mood disorders. Having basic understanding of mental illness and breaking down stigma can have a huge impact on us as a society and how we care for and support vulnerable individuals with mental health problems. Recovery is such an important aspect in treating people with mental health problems. Recovery doesn't necessarily mean that the person is 100% cured and free from mental illness but it means to live a fulfilling and happy life with or without the presence of symptoms and being able to come to terms with the illness. The days of the asylums are over, and there is more encouragement for care in the community which I think can be improved drastically if we pull together and really spread the word that it doesn't make you a freak if you have mental health problems. Statistics show that 1 in 4 of us will experience mental health problems at some point in our lives, which is a massive amount. There are a wide variety of treatments available for people with mental health problems, a lot of them are effective and really help people live long and healthy lifestyles but I think that if we really get down to the basics and support those with mental health problems, we can really make a positive impact on them. You can do this, and you don't need a degree in psychology, by learning about mental health problems and then you'd be able to identify symptoms and possibly help someone you love. I'm going to list a few of my favourite campaigns that might kick start your mind cogs :) http://www.time-to-change.org.uk/ http://www.rethink.org/ http://www.seemescotland.org.uk/ http://www.b-eat.co.uk/ http://www.mind.org.uk/ Read the complete review |
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35 reviews Health Problem / A general discussion on treatment options available for psychological disorders such as depression. If discussing medication, please only write here if you have had a direct experience of the medication and have useful information to share. |
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24 reviews Health Problem / Eating disorders - such as anorexia, bulimia, and binge eating - include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating Disorders are serious emotional and physical problems that can have life-threatening consequence |
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17 reviews Health Problem / Do you suffer from hayfever? We all know how annoying and even debilitating it can be. Share your tips and cures here. |
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21 reviews Health Problem / |
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15 reviews Health Problem / A disease which results in a constant use of alcohol despite the negative consequences. |
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17 reviews Health Problems Disease: Other Disorders - How to quit smoking Ready to quit smoking and end all nicotine use? |
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11 reviews Health Problem / Please contribute to this item only if you have had personal experience relating with this topic. |
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12 reviews Health Problem / |
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13 reviews Health Problem / Eating disorders - such as anorexia, bulimia, and binge eating - include extreme emotions, attitudes, and behaviors surrounding weight and food issues. Eating Disorders are serious emotional and physical problems that can have life-threatening consequence |
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13 reviews Health Problem / Insomnia is difficulty getting to sleep or staying asleep. Symptoms may include difficulty dropping off, and waking during the night and not being able to get back to sleep. |
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