Young CFS Patient, PLZ HELP URGNT!!

[Capricorn]

Hey, iam 18 and have been diagnosed as a chronic fatigue patient since 7 months (August being the 8the month in running). Ive been to millions of doctors from psychiatrist to general to physician to neurosurgeon to every other body or mentally related doctors but to no avail. They all are either boggled or seem to be confident that I would get back to normal very soon, that its nothing serious nor severe. Some either could'nt provide harm nor health, still others helped worsened my condition. Admitting defeat, I am currently seeing no doctor at all.

When it started 7 months ago, the fatigue was occasional or controllable, came with a little over work and such. Then it got worse as i caught depression for no reason and suffered till my head cracked cause no one would understand me. The last stages of my depression severely worsened my condition and even though now I am now mentally refreshed and completely cured of my depression since about a month by a psychiatrist, I am still encountering chronic fatigue in its worse. I seem to have some other conditions/symptoms as well in addition to chronic fatigue which may or may not relate to CFS. These include:

1 Extreme frequency in urination (few months)
2 Swollen Lymph Nodes on the neck (back, front) behind ears, slightly on the chest, abdomen and I feel like on or around the pelvis too. (almost 2 months now)
3 Severe loss of appetite.
4 Unability to walk properly (legs feel like lead, sometimes gets better on its own, other times gets worse)
5 Whole Body feels like lead, specially head is heaviest.
6 Hair loss (since 7 months) I couldn't relate it to any stress, fatigue or anything at all!
7 Vaginal odor (a month)

I don't feel like improving at all, no medication has yet to affect either of the above mentioned conditions or CFS itself. Iv had several general blood tests and body health examinations, all coming back clear. We are not financially stable enough to afford any more tests.

Because iv had depression usually doctors still believe that I am a psycho patient, me being too young to have CFS as well, and treat me like a mentally disturbed child. They carefully brain wash my parents as well. I have no one to talk to about this condition, since either people are too concerned about my mental condition or else are too stressed themselves. I feel lost, especially as the society I live in fails to accept or realize such a condition in a previously healthy and over active person. Its like a shameful disease. No doctor believes me or either isnt qualified enough to treat or diagnose my condition. Parents think I am not cooperating with the doctors which is the reason I am not recovering. They are tired to the point to conclude that I have no doctor to cure my condition in this country.

I get from bad to worse and then back again. Also my sleeping is so disordered, I can barely handle it. I am extremely sleepy (lethargic) all the time yet it takes 3 sleeping tablets to put me to sleep and as CFS is also there, I wake up restless and my back, especially, killing me. I am not even in a condition to sit on my PC yet I am so desperate I have to convey my problem to others and ask for help! Please help and provide any information or experience you can. No one dare say I am still depressed or mentally disoriented! If you can't say anything nice please don't comment and keep your suspicions to yourself, I am sick of psychos suggesting I am a psycho. Thanx, awaiting response soon.

[myhighfly]

Capricorn,

With your additional symptoms I really wonder whether you have been diagnosed properly. Lymph node and hair loss may be thyroid...vaginal odor may be something completely different. Frequent urination can be caused by many different things..large cysts in the abdomen, stones in the bladder, etc. Also, there is a type of thyroid issue that can cause problems with your kidney so maybe that can result in frequent urination. Typical CFS, you normally end up with 24 hour fatigue regardless of how much sleep you get, and it does not normally fluctuate. As for depression...I think any type of illness where you are fatigued can result in depression. If you are dragging every day its easy to fall into a slump.

Keep on your doctor or find another one. Tell them about your other symptoms. Be optimistic that a cure is out there. Remember that many people in this forum have suffered severe CFS symptoms for 20+ years.

[niaholt]

Hi Capricorn,
No one on this forum will be judging you as we are all trying to find cures ourselves. Frequent urination many cases in CFS can be diabetes insipidus, not a deadly form so relax about that. My CFS friend can urinate 80 times a day and her Dr told her to try to hold onto to it...stop yourself from going as it exhausts the kidneys. Maybe the vaginal odour is yeast infection. 7 of us did a USA urine test and all of us had yeast infections. Maybe you could try Nizoral or Nilstat or the more expensive Diflucan from your Dr....avoid sweet foods. I would suggest you try the Gupta programme.....www.cfsrecovery.com to learn to calm the body. This programme has helped a lot of us tremendously When the body gets into this stressed state the sympathetic nervous system takes over and sends the body into a crisis state with mixed messages. The body then gets into a panic state. Try meditation CDS.

[kenvj]

Someone has suggested you may have thyroid problems in which case make sure you are getting enough iodine in your diet. Lack of iodine can cause all kinds of problems especially fatigue. Google for Iodine Deficiency and if you think it might be that then start taking an iodine supplement, Hope you improve, keep in mind that most people do improve over time.

[neil25]

Im also quite young myself and have had cfs for over a year. Let me promise you it does get better but its extremely difficult. I don't know what got me through the days when i first got ill. I was in complete agony all day and sleeping for at least 18 hours a day. It was only after taking a lot of vitamins daily I started to get better. I now take around 15 daily. Trust me they really do work, I recently went off them for 2 weeks and I was like a vegetable stuck in bed. I now know that they are so important to me. There so vital like insulin to a diabetic. If you would like a list of them please reply back to me and I would be more than happy to tell you the doseage ect.

[Capricorn]

Capricorn,

With your additional symptoms I really wonder whether you have been diagnosed properly. Lymph node and hair loss may be thyroid...vaginal odor may be something completely different. Frequent urination can be caused by many different things..large cysts in the abdomen, stones in the bladder, etc. Also, there is a type of thyroid issue that can cause problems with your kidney so maybe that can result in frequent urination. Typical CFS, you normally end up with 24 hour fatigue regardless of how much sleep you get, and it does not normally fluctuate. As for depression...I think any type of illness where you are fatigued can result in depression. If you are dragging every day its easy to fall into a slump.

Keep on your doctor or find another one. Tell them about your other symptoms. Be optimistic that a cure is out there. Remember that many people in this forum have suffered severe CFS symptoms for 20+ years.

I just remembered, Iv had ultra sounds of stomach and pelvis too, which suggest that I am perfectly normal, kidneys and all. The docs unsure herself but thats what the rezults show. Also Iv had 2 urine tests and even a culture which suggest I got nothing!! The urine's drivin me crazy and the reports say nothing! Its like theyr all nuts %P

[Capricorn]

Im also quite young myself and have had cfs for over a year. Let me promise you it does get better but its extremely difficult. I don't know what got me through the days when i first got ill. I was in complete agony all day and sleeping for at least 18 hours a day. It was only after taking a lot of vitamins daily I started to get better. I now take around 15 daily. Trust me they really do work, I recently went off them for 2 weeks and I was like a vegetable stuck in bed. I now know that they are so important to me. There so vital like insulin to a diabetic. If you would like a list of them please reply back to me and I would be more than happy to tell you the doseage ect.

Dear first it would be really helpful if u actually told me how old u are, if u dont mind. It would help sooth my parents mind as well that iam not a wierdo plus as I mentioned before, we are not financially able to afford as many vitamins and stuff. I am gettin vitamin D & calcium tablets, glucose and some fruits for health but not sufficient enough. Maybe thats why we are all worried why these things arnt working. I was recently getting so much sleep as well and still waking up wanting nothing more than to get lost in my dreams again, its so agonising. Parents of course get impatient out of concern tell me to get out of bed, do somthing for peat's sake!! But alas the condition remains and just gets bad or worse or........well... bad.. :1

[Capricorn]

Someone has suggested you may have thyroid problems in which case make sure you are getting enough iodine in your diet. Lack of iodine can cause all kinds of problems especially fatigue. Google for Iodine Deficiency and if you think it might be that then start taking an iodine supplement, Hope you improve, keep in mind that most people do improve over time.

My thyroid is swollen, but the docs are sure there aint nothin wrong.. thev got test results to prove it. But my iodine intake was absolutely normal and no docs suggested other wise.... But i will surely google for it, thnx. Actually the bigger problem is that my family is not very fond of me searching my own ailments over the internet. They think this is the real problem, that I am able to diagnose myself better that a doctor, thats why I dont listen to them and I am not treated. They take my intelligence and awareness (Alhumdullillah) for granted.

[CS1]

Call the optimum health clinic and see if they can help.

They use STOP, EFT and other tools to help.

Thanks
CS

[Capricorn]

A few weeks back I used to sleep at least 10 to 12 hours and that too under the influence of 3 sleeping medicines suggested by doctor, without them I could sleep little more than 4 hours. Now since a few days my sleep is reduced again, today I slept 3 hours under 2 medications at night. No medication effects me, confused as hell and parents are no help either with there nagging (worried). Cant sleep during day times either!! >:( Already the 12 hour sleeps were restless, and now this?! Cant walk either, can please someone point out this walking problem?? Thnx for all ur comments ppl!

[myhighfly]

Someone has suggested you may have thyroid problems in which case make sure you are getting enough iodine in your diet. Lack of iodine can cause all kinds of problems especially fatigue. Google for Iodine Deficiency and if you think it might be that then start taking an iodine supplement, Hope you improve, keep in mind that most people do improve over time.

My thyroid is swollen, but the docs are sure there aint nothin wrong.. thev got test results to prove it. But my iodine intake was absolutely normal and no docs suggested other wise.... But i will surely google for it, thnx. Actually the bigger problem is that my family is not very fond of me searching my own ailments over the internet. They think this is the real problem, that I am able to diagnose myself better that a doctor, thats why I dont listen to them and I am not treated. They take my intelligence and awareness (Alhumdullillah) for granted.

Yes, you have to be cautious of what you read on the internet...there is a lot of false information. Dont give up on the doctors. I was not diagnosed with a thyroid issues and all of the tests they did showed no issue, however, once I started thyroid supplements I am doing much better. Its not that the doctors are idiots...they are going off of what the normal ranges are typically (probably for 95% of people) but some of us dont fall within those ranges. Dont give up..keep researching yourself. You know your body better than a doctor and sometimes you might have a symptom that you thought was normal that comes up during your research!

[Capricorn]

Are swollen lymph nodes satisfactorily diagnosed by blood tests?? What possible relation could they have to CFS? Isnt a biopsy and stuff necessary to make completly sure its nothin bad?

[bm303]

Hey, iam 18 and have been diagnosed as a chronic fatigue patient since 7 months (August being the 8the month in running). Ive been to millions of doctors from psychiatrist to general to physician to neurosurgeon to every other body or mentally related doctors but to no avail. They all are either boggled or seem to be confident that I would get back to normal very soon, that its nothing serious nor severe. Some either could'nt provide harm nor health, still others helped worsened my condition. Admitting defeat, I am currently seeing no doctor at all.

When it started 7 months ago, the fatigue was occasional or controllable, came with a little over work and such. Then it got worse as i caught depression for no reason and suffered till my head cracked cause no one would understand me. The last stages of my depression severely worsened my condition and even though now I am now mentally refreshed and completely cured of my depression since about a month by a psychiatrist, I am still encountering chronic fatigue in its worse. I seem to have some other conditions/symptoms as well in addition to chronic fatigue which may or may not relate to CFS. These include:

1 Extreme frequency in urination (few months)
2 Swollen Lymph Nodes on the neck (back, front) behind ears, slightly on the chest, abdomen and I feel like on or around the pelvis too. (almost 2 months now)
3 Severe loss of appetite.
4 Unability to walk properly (legs feel like lead, sometimes gets better on its own, other times gets worse)
5 Whole Body feels like lead, specially head is heaviest.
6 Hair loss (since 7 months) I couldn't relate it to any stress, fatigue or anything at all!
7 Vaginal odor (a month)

I don't feel like improving at all, no medication has yet to affect either of the above mentioned conditions or CFS itself. Iv had several general blood tests and body health examinations, all coming back clear. We are not financially stable enough to afford any more tests.

Because iv had depression usually doctors still believe that I am a psycho patient, me being too young to have CFS as well, and treat me like a mentally disturbed child. They carefully brain wash my parents as well. I have no one to talk to about this condition, since either people are too concerned about my mental condition or else are too stressed themselves. I feel lost, especially as the society I live in fails to accept or realize such a condition in a previously healthy and over active person. Its like a shameful disease. No doctor believes me or either isnt qualified enough to treat or diagnose my condition. Parents think I am not cooperating with the doctors which is the reason I am not recovering. They are tired to the point to conclude that I have no doctor to cure my condition in this country.

I get from bad to worse and then back again. Also my sleeping is so disordered, I can barely handle it. I am extremely sleepy (lethargic) all the time yet it takes 3 sleeping tablets to put me to sleep and as CFS is also there, I wake up restless and my back, especially, killing me. I am not even in a condition to sit on my PC yet I am so desperate I have to convey my problem to others and ask for help! Please help and provide any information or experience you can. No one dare say I am still depressed or mentally disoriented! If you can't say anything nice please don't comment and keep your suspicions to yourself, I am sick of psychos suggesting I am a psycho. Thanx, awaiting response soon.

Your not crazy, and your not "depressed". Look into heavy metals and other toxins. Lead, mercury, copper, etc. Get a hair test through DDI and see how it looks. Read about Andrew Cutler... a chemist who wrote two books extensively on mercury and other heavy metals and related illnesses. It saved my life. I am young too... just 17.

[neil25]

Hi can you talk about your story? What were you diagnosed with? what was your treatement?

[emmawati]

Dear Capricorn,

I have read some of the posts that people have written to you and I need to set straight some of the comments. Firstly, my story to let you know where I am coming from. I am writing short sentences as I get confused easily and my brain is foggy often. My name is Emma and I have suffered with post-viral Chronic fatigue since February this year. I am a 24year old girl who had glandular fever in my second last year of highschool. I have always been a very high achieving person who is constantly pushing myself. I used to be extremely healthy, danced everyday and was learning 3 languages, while working a stressful full-time job. In february I got the swine flu for about a month. It was so bad I thought I was going to die and I even kept my mobile beside me incase I had to call an ambulance...I should of gone to hospital. After the virus left me I was experiencing different symptoms and I was so fatigued. At first I thought that my body was just exhausted after being so sick. I was driven to the doctor and he told me that I will be fine!!!!!! I could hardly sit upright, I couldn't get dressed, I could hardly speak or understand him, I was sweating so much that my boyfriend had to change the sheets and my clothes 4 times a day. I couldnt even have a shower without falling over. That doctor made me have 4 blood tests, a chest xray, faeces culture tests, urine samples and an enema. All this exhausted me even more!! I was crying all the time because I was sooooo ill. All I could do was lie in my room, my joints were painful, shaky, very dizzy, sensitive to light and sound,nauseus, very short of breath, I had migraines, my lymph nodes were sore, sweating, I couldn't sit up at all, or even hold a cup. I felt dumb because I got extreme mood swings over nothing and got confused easily. I also had and still have at times extreme chest pain for no reason and it was difficult to breathe!

Anyway, I had a doctor (friend's dad) who finally diagnosed me from 7 hours away!! This was after 2 months of CFS. I was soo angry because this doctor made me take heaps of antibiotics, antivirals etc. So my parents looked CFS up online and read it to me over the phone. I had EVERY single symptom of CFS!! It was actually a relief to know that I was NOT crazy, that I was RIGHT and that doctor let me sit in front of him while I pleaded that I needed help!!!! Tell your parents that doctors do NOT know everything NOR do they know what CFS sufferers are REALLY going through!

It became too difficult to live with my boyfriend as he is studying and working so he couldn't look after me. I was driven to my parents and they are still looking after me. For months I would lie in bed hardly able to talk or move as it was soooo exhausting. My migraines are still bad...excruciating pain and many migraine tablets. When I could walk, I would wake up and sit in bed until I could force myself to stand due to dizzyness. I would always push myself and i am still learning! I have spoken to sufferes of CFS and they have ALL said NOT to push yourself and that time is the only healer. I have a different doctor as i am now at my parents and he has also made it difficult for me. Every time I would see him he would say that I should try a different type of medication and he still pushes. He would say that maybe I should take more antidepressants to see if it makes all these other symptoms go away. I felt hopeless and soo upset..it felt like they thought I was JUST depressed.

Let me tell you that he has now finally accepted that my symtoms ARE physical and that I am not just depressed. I AM depressed becuase of this illness and what I am going through....it is only natural!!!! What young person wouldn't be depressed if they had to spend most of their days in bed and feeling like an old women?? CFS affects the nervous system which is why we are so easily affected my emotional, mental, and physical stimulation. This is why some of us lose hair and have swollen lymph nodes....we are more succeptible to these things. Our bodies are undergoing alot! I break down about once every 2 weeks as I am sick of it, exhausted, and want to get on with my life. It is normal. If you take antidepressants it will not solve your CFS. I only take a small dose of antidepressants. By taking these it is only tricking your body into thinking you are happier. I believe it is better to deal with it and accept it. Now that I can write...I keep a notebook/diary of what I feel and my symptoms on that day. However, some days I have setbacks from doing to much. e.g. watching to many movies, making a drink etc (very small things) If i look back at how i used to be I can see that my setback are less severe.

I have done alot of research now, spoken to many people, seen specialists and I have found there is NO cure. All you can do is eat healthy, take vitamins, astra forte (great) and educate those around you on what you are going through. Print off information and give it to your parents and friends. Also don't be hard on yourself (I am usually) but im finding that the more I accept that i have CFS, the more I find out about myself. My parents are learning too and its hard for them as well. I have left out heaps but there is just too much. keep in touch. This is the first time ive written on a blog or talked to someone around my age group.

Take care
Emma



BTW i have been adding to this a little everyday as I am still pretty weak and sensitive to the pc light.