Discussions By Condition: I cannot get a diagnosis.

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Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • April 12, 2007
  • 06:50 PM

Most of my life from teenage years onwards ive struggled with waking up in the morning and always feeling tired thats got worst little by little over time. im 29 now and have a 9 year old daughter after having my daughter i was pretty normal (my normal) for a year or two, i was able to work fulltime as well as being a single parent. due to my daughter having problems which turned out to be autism (diagnosed at 5 years old) i stopped working when she was about 3 as she wouldnt let me sleep at night and i was getting up to late and was having to do 6 day weeks to keep up with my hours and was to tired while driving and one day i was driving down the street and a group of baby ducks and a mother was walking over the road and everyone else on the other side of the road saw them and stopped but i didnt (well i must have because i knew what i had done and stopped, maybe it just register in my brain they was there) and ran over them killing one of the baby ducks because i was so tired, i was so devastated by this i quit my job and stopped working. life went on reasonable normal then she started school and getting up early in the morning was so hard and majority of the time we was late getting to school. my house has been a tip for a long time because i dont have the energy to clean it and get up in the morning, at the weekends i could easily sleep for 12 hours+ and if i go to the gym i cant get up or do anything around the house for about 3 days (my friend thinks im to lazy to go to the gym) after years and years of complaining to the doctor about my tirdness and struggle to get up and being told of course your tired your depressed and have a dificult child have some more anti depressants. last summer i was finally referred to a sleep clinic thinking i had a sleep problem but didnt hear anything. last year in october i got a bad case of flu and it seems all normality (my normality) has vanished. i havent managed to go to college much (about 6 times since october) as walking is about 10 minute walk each way between the bus stop and college (im not allowed to park there so park at the bus stop). on the way to college im fine, but after a few hours the walk back to the bustop my legs are hurting and aching so much sometimes i think they are just going to give way. im then exhausted for about 3 or 4 days, cant get out of bed till about lunchtime for school and then when i get back i have no energy to do anything. in december the doctor suggested i may have ME, although i told her i didnt think i had that as i assumed it was a mental disorder as alot of people said it was and there was actually nothing wrong, anyway made a referal to immunology. also in december i had my sleep assesment. then just before christmas my daughter went on a school trip for 5 days and respite care was starting the day she got back, so i was going to have 6 days to myself. i had so many plans, was gonna go out, go cinema, visit friends etc etc and promised the social worker i would tidy the house. in the 6 days she was away i spent most of it in bed i didnt do anything i wanted to do i just spent 16 hours plus in bed sleeping the whole week. people couldnt understand how i could stay in bed that long and not go toilet, but i was hardly eating or drinking so didnt really need to go wee, and i went poo about once a week. i have an intollerance to wheat for a few years and had started eating wheat last may again and i think it must of turned into an allergy because my liver started having problems functioning and my liver results went really high, my doctor thought i was drinking to much alcohol but came home and had a look as to other reason my liver was bad the same why an alcholic was and i saw that food allergy was a cause so stopped eating wheat and my liver results have been coming down since. i mentioned it to the doctor and she said it cannot be that as i would be blotchy. so sorry back to december when she daughter was away. when she got back i was full of energy had two week christmas break where i didnt have to get up for school. did some tidying around the house and felt better than ive felt since years and years ago. i did some reading up on ME and found alot of the symptoms i had. the muscle aches in my legs and arms, the not pooing, my temperature low on average 36 degrees c, which the doctor laughed at saying its normal, if my body temp is low that it cuts down on concentration (i forget everything, to the degree that i have to have appointments ring me because i forget to look at the calender if i even remember to write them down) and metabolic rate and maybe why i cant lose weight (this was in november time) and she laughed at me sying it was normal. ive always been a cold person even when i was obese i have to wear socks to bed else i cannot sleep and i have my hands either under me or between my legs. i started taking my body temp regularly as when i had the flu in october i thought i was having a high fever and i was sweating but my body temp was around 35.5 and found this strange. i regularly took my temp and for about a month, it was never above 36.4 as i said it fluctuated around 36. so thats when i mentioned it in november. so again to christmas holidays, she went back to school and i was fine felt amazing after 3 weeks of rest, and thought well it cannot be ME as i feel better. after a few days of getting up for school and trying to go back to college i got really bad again and couldnt do a thing, couldnt tidy, couldnt get up till middayish for school i had chronic belly pains and my belly had blown up big and i looked like was about to have a baby etc etc. i went to a nutritionist in january and she told me she thinks i have a yeast infection in my belly. so told me lower my GI intake and have some live bacteria tablets and magnesium. my belly has now gone down i dont have the pains in my belly. but everything else has stayed the same. i struggle so much now with house work and getting up social services have sent someone out to wake me up in the mornings for school and people to show me how to tidy my house. they was here 3 hours and i had to help after an hour i couldnt move, i was in pain everywhere. i havent been to college since january and im just so exhausted all the time. with being woken up at 7.30 am every morning for school and struggling to sleep at night not matter how tired i am, and i dont sleep well either. ive never felt this bad, my eyes are sore all the time, my body just aches and feels bad all the time. my sleep assessment follow up appointment is in may and i managed to get the secretary to tell me what conclusion they had come to, and they said one side of my brain is not doing something the same as the other side of my brain is doing and thus causing hypersomnia and they are going to diagnose me with essential hypersomulance. but ill have to wait till may to discuss it with the neurologist. now the fact ive always been tired i can understand that diagnoses although im going to insist they find out why my brains doing that. but the thing thats troubling me the most is to why i have got alot worst since the flu in october and the changes in my body and evergy levels and ive always suffered from headaches but was told its stress. immunology wrote to me in the end of march saying they wont see me and my referral doesnt fit their requirements, the chronic fatigue place wont see me because i dont fit their criteria, now looking at the websites the only thing i dont suffer from is the sore throats. so i wonder what the doctor has told them, as they think im a hypercondriac and depressed and now referring me for a psychiactric assessment. im not depressed the only thing depressing me if anything is how tired i am all the time. yes my life is tough with my child, but i have goals, and my mood is fine when im not to tired to function. ive always struggled losing weight even when i was on a calorie diet and went down to about 800 calories a day and still not losing weight. since october because i havent got the energy to make food, ive lost about 25+ pounds and havent even tried to lose weight as thats the last thing on my mind at the moment. only reason i havent lost more is because i have been eating alot of take outs. i cannot carry on like this for much longer.

im sorry this is all muddly and i hope its readable.

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9 Replies:

  • Try seeing a chinese doctor as their tonics are amazing. I can recommend taking siberian ginseng along with licorice. Another effective chinese tonic is called Rehmannia Six. (Get only quality products though, the best being dry powders which can be emptied into half a cup of boiled water and drunk 20 minuted after a main meal). Don't take over the stated dose and check blood pressure as herbs can effect this.
    kentishman 19 Replies Flag this Response
  • Try seeing a chinese doctor as their tonics are amazing. I can recommend taking siberian ginseng along with licorice. Another effective chinese tonic is called Rehmannia Six. (Get only quality products though, the best being dry powders (you can even empty capsules) which can be emptied into half a cup of boiled water and drunk 20 minuted after a main meal). Don't take over the stated dose and check blood pressure as herbs can effect this.
    kentishman 19 Replies Flag this Response
  • Most of my life from teenage years onwards I've struggled with waking up in the morning and always feeling tired that’s got worst little by little over time. I'm 29 now and have a 9 year old daughter after having my daughter I was pretty normal (my normal) for a year or two, I was able to work fulltime as well as being a single parent. due to my daughter having problems which turned out to be autism (diagnosed at 5 years old) I stopped working when she was about 3 as she wouldn’t let me sleep at night and I was getting up to late and was having to do 6 day weeks to keep up with my hours and was to tired while driving and one day I was driving down the street and a group of baby ducks and a mother was walking over the road and everyone else on the other side of the road saw them and stopped but I didn’t (well I must have because I knew what I had done and stopped, maybe it just register in my brain they was there) and ran over them killing one of the baby ducks because I was so tired, I was so devastated by this I quit my job and stopped working. Life went on reasonable normal then she started school and getting up early in the morning was so hard and majority of the time we was late getting to school. my house has been a tip for a long time because I don’t have the energy to clean it and get up in the morning, at the weekends I could easily sleep for 12 hours+ and if I go to the gym I can’t get up or do anything around the house for about 3 days (my friend thinks I’m to lazy to go to the gym) after years and years of complaining to the doctor about my tiredness and struggle to get up and being told of course your tired your depressed and have a difficult child have some more anti depressants. Last summer I was finally referred to a sleep clinic thinking I had a sleep problem but didn’t hear anything. Last year in October I got a bad case of flu and it seems all normality (my normality) has vanished. I haven’t managed to go to college much (about 6 times since October) as walking is about 10 minute walk each way between the bus stop and college (I’m not allowed to park there so park at the bus stop). On the way to college I’m fine, but after a few hours the walk back to the bus top my legs are hurting and aching so much sometimes I think they are just going to give way. I’m then exhausted for about 3 or 4 days, can’t get out of bed till about lunchtime for school and then when I get back I have no energy to do anything. in December the doctor suggested I may have ME, although I told her I didn’t think I had that as I assumed it was a mental disorder as a lot of people said it was and there was actually nothing wrong, anyway made a referral to immunology. Also in December I had my sleep assessment. Then just before Christmas my daughter went on a school trip for 5 days and respite care was starting the day she got back, so I was going to have 6 days to myself. I had so many plans, was gonna go out, go cinema, visit friends etc etc and promised the social worker I would tidy the house. In the 6 days she was away I spent most of it in bed I didn’t do anything I wanted to do I just spent 16 hours plus in bed sleeping the whole week. People couldn’t understand how I could stay in bed that long and not go toilet, but I was hardly eating or drinking so didn’t really need to go wee, and I went poo about once a week. I have an intolerance to wheat for a few years and had started eating wheat last may again and I think it must of turned into an allergy because my liver started having problems functioning and my liver results went really high, my doctor thought I was drinking to much alcohol but came home and had a look as to other reason my liver was bad the same why an alcoholic was and I saw that food allergy was a cause so stopped eating wheat and my liver results have been coming down since. I mentioned it to the doctor and she said it cannot be that as I would be blotchy. so again to Christmas holidays, she went back to school and I was fine felt amazing after 3 weeks of rest, and thought well it cannot be ME as I feel better. after a few days of getting up for school and trying to go back to college I got really bad again and couldn’t do a thing, couldn’t tidy, couldn’t get up till middayish for school I had chronic belly pains and my belly had blown up big and I looked like was about to have a baby etc etc. I went to a nutritionist in January and she told me she thinks I have a yeast infection in my belly. So told me lower my GI intake and have some live bacteria tablets and magnesium. My belly has now gone down I don’t have the pains in my belly. But everything else has stayed the same. I struggle so much now with house work and getting up social services have sent someone out to wake me up in the mornings for school and people to show me how to tidy my house. They were here 3 hours and I had to help after an hour I couldn’t move, I was in pain everywhere. I haven’t been to college since January and I’m just so exhausted all the time. with being woken up at 7.30 am every morning for school and struggling to sleep at night not matter how tired I am, and I don’t sleep well either. I've never felt this bad; my eyes are sore all the time, my body just aches and feels bad all the time. my sleep assessment follow up appointment is in may and I managed to get the secretary to tell me what conclusion they had come to, and they said one side of my brain is not doing something the same as the other side of my brain is doing and thus causing hypersomnia and they are going to diagnose me with essential hypersomulance. But ill have to wait till May to discuss it with the neurologist. Now the fact I’ve always been tired I can understand that diagnoses although I’m going to insist they find out why my brains doing that. But the thing that’s troubling me the most is to why I have got a lot worst since the flu in October and the changes in my body and energy levels and I’ve always suffered from headaches but was told its stress. Immunology wrote to me in the end of March saying they won’t see me and my referral doesn’t fit their requirements, the chronic fatigue place won’t see me because I don’t fit their criteria, now looking at the websites the only thing I don’t suffer from is the sore throats. So I wonder what the doctor has told them, as they think I’m a hypochondriac and depressed and now referring me for a psychiatric assessment. I’m not depressed the only thing depressing me if anything is how tired I am all the time. yes my life is tough with my child, but I have goals, and my mood is fine when I’m not to tired to function. I've always struggled losing weight even when I was on a calorie diet and went down to about 800 calories a day and still not losing weight. since October because I haven’t got the energy to make food, I’ve lost about 25+ pounds and haven’t even tried to lose weight as that’s the last thing on my mind at the moment. Only reason I haven’t lost more is because I have been eating a lot of take outs. I cannot carry on like this for much longer. I’m sorry this is all muddled and I hope it’s readable. Apologies for editing...just needed some spelling fixes, capitalization, and paragraphs. I'm dyslexic, and can't read a big hunk of writing the way it was posted originally. (I also deleted one paragraph of yours, just because the program wouldn't let me post due to too long.)So here is what I think:Stop all wheat, alcohol, and sugar, and I'll bet you feel better in a week. Honestly, your symptoms are just so clearly related to what you are eating/drinking. I'm not saying you consume "too much" of any of these things, but that your body can't handle even one ounce of them. We are born who we are, and we can't change the fact that some of us are very sensitive. But we can change how we treat our body. Yours is clearly telling you to change what you eat, what you drink, and how much sleep you get.When you have removed all wheat, alcohol, and sugar from your diet for a whole week, then you will see if there are any other symptoms left to worry about. Bet there are few, if any. And if you stay on these restrictions for a full month, I'll bet you get back to "normal for you" as you say. I'll bet that without making your body work so hard to deal with these things it really cannot handle, you will be in less pain, and you will be able to get more rest from your sleep, at the same time you won't be so tired because you won't be making your body work so hard all the time.Yah, it isn't fair that your body cannot handle wheat, alcohol, or sugar. But if you want to feel well, you need to listen to your body. When you feel better, you may be able to get back to work and college, and then you'll be able to make some money. Being able to take care of yourself and your daughter will also help you feel a lot better.Chances are, you came from a family that didn't take good care of you. (For some reason, that is the case for a lot of medically sensitive people). But you are now the adult in the beautiful family you made, that consists simply of you and your daughter. You will feel happier when you can take care of yourself, your life, and your daughter as a fully functional adult. You can do it. Clear your body of those things that are toxic to it (the wheat, alcohol, and sugar) and get back control of yourself. Write back when you read this, and let me know you got it.Very best,Shula
    Anonymous 42789 Replies Flag this Response
  • This started during your teenage years? That's a key age for mono infection. Did you ever have an antibody check for EBV? It's linked to Chronic Fatigue Syndrome.
    Anonymous 42789 Replies Flag this Response
  • Try seeing a chinese doctor as their tonics are amazing. I can recommend taking siberian ginseng along with licorice. Another effective chinese tonic is called Rehmannia Six. (Get only quality products though, the best being dry powders which can be emptied into half a cup of boiled water and drunk 20 minuted after a main meal). Don't take over the stated dose and check blood pressure as herbs can effect this. While I absolutely agree an Oriental Medical practitioner would be extremely helpful for you, I don't agree that you should self medicate with Chinese herbs in this case. Please try to find a qualified practitioner near you, who can better diagnose your condition and prescribe Chinese herbs. Visit www.acufinder.com to find an acupuncturist/herbalist near you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • firstly thanks all for all the replies, it is very much appreciated.I have been to see the chinese local shop a few times, i have had acupuncture when ive been in to much agony to move due to stomache pains, and i have ginseng when i remember to drink it. but it doesnt actually make much of a noticable difference. that is all the acupunturist recommended.i dont eat wheat and sugar, i know im intollerant to wheat and sugar, i never add sugar to anything and eat always buy sugar free food (jam, cerial, etc) when i can and dont buy processed food. i also eat a low glycemic diet. this does not make a huge difference, but makes a noticeable one (ie i can stay awake longer and the stomache are alot less and i poo more often. i drink alcohol but not much. i had a look at that EBV. not sure if it was the same thing, but from about 15 years old onwards i got toncilitis a number of times and had my toncils removed when i was 16/17 around that age i also got a bad case of flu that lasted normal time but took about 6 months and about 3 different sorts of antibiotics to get rid of my broncitis that i developed. i dont remember any fatigue lasting more than normal flu but it was a long time ago. my daughter is also prone to toncilitis aswell, do you think its connected? i have had an antibody test but i think it was a thyroid antibody test and it was fine apparently. i dont think i can bare to ask the doctor for more tests, its because of me going in saying i read such and such on the internet maybe its that as the symptoms are consistent, is why they say im self diagnosing and think im a hypercondriac.
    Anonymous 42789 Replies Flag this Response
  • www.ahummingbirdsguide.com ME you have all the sx...sorry I had some difficulty reading the post. I did se ME mentioned...did you have tests for it? sure sounds like it to me...mommy cat
    mommy cat 1654 Replies Flag this Response
  • O.K.,Please remember that I'm not an M.D., so here goes.I find it's best to try the simple solutions first before getting worked up over the "biggies".Extreme muscle fatigue, after exertion, indicates a lack of oxygen going to your muscles. Iron suppliments if well tolerated will do you a world of good.You admitedly don't eat much, but felt "better" around the holidays....when most of us eat much more than usual. Please please considerI've worked with autistic children in the past and it was the most emotionally draining experience of my life. That said, caring for your child presents challenges that even "healthy" people would find insurmountable. Counseling sessions and support groups will help you to deal with the stress - which weighs you down.Your doctor may prescribe an antidepressant to lift your mood...don't be so quick to refuse it. Your lethargy and lack of motivation (everyone hates housework) could be symptoms of depression. Please keep an open mind.God Bless YouMAGKYABYATDOYL
    Anonymous 42789 Replies Flag this Response
  • Your doctor may prescribe an antidepressant to lift your mood...don't be so quick to refuse it. Your lethargy and lack of motivation (everyone hates housework) could be symptoms of depression. Please keep an open mind. Okay, sure. Keep an open mind, and also understand that antidepressants can have horrible side effects, especially in teenagers and young adults! Before you take any antidepressant/ antianxiety meds, look them up on www.drugs.com. Be an educated consumer so you know what you are getting yourself into, and if it is worth it. I have seen too many wonderful people being nearly crippled by some of these meds. Yes they help some people (around 50%) but for others they cause much harm. Lastly, consider a form of treatment called NAET. You mentioned food intolerances and NAET is the only treatment which can actually reverse an allergy. Please look into this - it has changed my life and I cannot recommend it highly enough. Visit www.naet.com for more info. Best wishesDOM
    acuann 3080 Replies Flag this Response
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