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unaware
New Member


Date Joined Sep 2004
Total Posts : 7
   Posted 10/8/2004 2:37 AM (GMT -7)   
Hi there, im new to this site and i dont know what im doing. Ive suffered from chest pain since last december and it has slowly spread through my arms stomach legs etc. I have constant headaches, i dont sleep well at all if i sleep. I am always tired. I have been to see several different doctors at my practice and they all have said take paracetamol it will go away and it hasnt. Only one doctor decided it was viral fatigue, but i havent had any major viruses. Other than that ive had no help and i dont know what is happening to me. I am a single parent with two young children and i feel so helpless as im so tired all of the time and am missing out on doing things with them because of this which is just adding to guilt i already feel due to whatever is wrong with me. Is there anyone that could tell me they feel similar as at the moment i feel im on my own with all of this and when i try to explain how i feel to people they dont seem to believe me or take me seriously.

unaware
New Member


Date Joined Sep 2004
Total Posts : 7
   Posted 10/8/2004 3:23 AM (GMT -7)   
Hello again, i want to add to the above, because i got myself all upset and just babbled on. I have had blood tests to check that there was nothing wrong with my thoiroids, kidneys liver etc. and they all came back stating there is nothing wrong there. I dont normally suffer from stress but my symptoms and no diagnosis for them isnt helping keep stress at bay. The doctors i have seen do not actually seem to take me seriously and i cant see how taking parecetamol is supposed to help with tiredness and fatigue. I do not at present feel that i have been given a proper diagnosis and if i have i have been given no information on what viral fatigue actually is. What research i have done myself keeps throwing up glandular fever as the main cause and have not had this.

My symptoms are chest pains on the left side, under arm pain also on the left side. Heaviness in my arms and legs, stomach cramps and a cramp like pain you get from running even if im sitting down. Shakiness at times, and a feeling of shakiness with no obvious physical shaking (this last one usually occurs on a night when i try and settle down to sleep so it keeps me awake an awful lot). I have toilet problems sometimes im constipated other times i cant get there fast enough. I have terrible headaches which wont go usually starting with a sharp pain towards the rear of my head. I am tired through sleep deprivation. However, when i do manage to get a good sleep i still wake up feeling really tired. I dont feel as though i achieve nearly half so much throughout the day as i used to as i never seem to have the energy. This can last for weeks then all of a sudden i have a few good days where everything seems back to normal. Then it all starts again.

Maybe i sound foolish to you, but i really would appreciate any replies that may help me understand whether what i am feeling is some sort of fatigue syndrome. As I have yet another doctors appointment on monday with yet another doctor and i would like to be able to confirm or suggest something to the doctor so that i can at least make some headway in finding out what may be wrong with me.

Thank you for taking the time to look at this posting.

debsw
New Member


Date Joined Jul 2004
Total Posts : 7
   Posted 10/9/2004 2:04 PM (GMT -7)   
Oh honey, are you in the U.K? I'm an american living in England, and whenever I go see a doctor about any medical problems, I seem to just get prescribed medication, and scooched in and out of the room, and it seems most of the time I am diagnosing myself!! The doctors here aren't very helpful, I find, and it can get frustrating. Just keep banging away at them, I am sure you will get somewhere!! And why would you sound foolish!! You are suffering, and there's just no outlet, or help!! Feel free to email me and dump anytime, debbwalk@hotmail.com maybe we could exchange horror stories! Hope you get better, and just keep hugging those children.

unaware
New Member


Date Joined Sep 2004
Total Posts : 7
   Posted 10/10/2004 7:34 AM (GMT -7)   
Is it that obvious that i live in the UK, we really must have a failing GP service! Thanks very much for your reply, it was great to hear from someone and very kind. After writing how i feel down on this site, which is the first time i have probably wrote down and actually thought about all of my symptoms, i feel in a much more controlled mood, so hopefully on monday i will manage to get through to my doctor just how i am actually feeling. I dont think I have CFS, however, feeling so fatigued all of the time, i now know that this is not what alot of people think it is - an imaginary illness. I can't believe what people suffering CFS must go through on a daily basis, with so many people labelling it as a none existent illness and just an excuse not to do things. In future I will make sure i stand up for anyone that this happens to as i feel with whatever i have i have had a brief insight into the effects of fatigue on daily life. I will e mail you soon as it would be nice to talk with you and you take care. Hope the doc actually believes me tomorrow, but knowing there is someone i can talk to has made me feel more positive even if the doctor is not helpful. Thanks!!!    tongue

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/10/2004 5:45 PM (GMT -7)   
Hi unaware,
Welcome to HealingWell and the CFS message board!  I'm sorry to hear you are having so much trouble, both with your health, and with getting diagnosis and treatment.  Don't worry, you don't sound foolish AT ALL.  I've heard the same type of problem many, many times, so you are definitely not alone (although I know it seems like it sometimes).
 
While I'm not an expert or professional, your description of symptoms does sound like Chronic Fatigue Syndrome (CFS), which is also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) in the US and certain other countries.  Also in the UK and Australia, it's called Myalgic Encephalopathy (ME) although I might not have spelled that last one right.  Another less common name is Post Viral Syndrome, or Post Viral Fatigue Syndrome.  If you read enough research, you will notice certain combinations of symptoms associated with certain names.  But in general, it is all the same illness.
 
There's no known cause, cure, or even very effective treatment for CFS.  But research is ongoing which gives one hope....well, it gives me hope anyway.  The key to getting appropriate treatment, in my experience, is to forget about trying to get a name put on your illness by a Dr.  Most people drive themselves and their Drs nuts, trying to get a diagnosis, while Drs themselves have no intention of giving a diagnosis, once they realize "what they're dealing with".  On the other hand, if you just present one symptom at a time to your Dr, your Dr will be much more willing to treat each symptom, than to give you a diagnosis (in my experience).  CFS resembles a number of other illnesses, so it is important to have those illnesses ruled out (medical language which means make sure you don't have them).  But as you present your symptoms to your Dr, your Dr will do whatever testing is necessary to make sure you don't have something else.
 
I'll post some links to a few organizations and websites, including HealingWell's CFS Resource page, where you can learn much more about CFS.
Ok, that should be plenty enough to start with!
 
Well, hang in there, unaware, and good luck!  Hopefully you will soon turn that name around, as you become much more aware (regarding CFS)!  LOL!!  But seriously, educating oneself is the first step in getting the treatment that will help.  If you have any questions, or information which you can't find, or don't understand, please feel free to ask.  I'm not an expert or professional, but I've lived with CFS for almost 15 years.  Plus other members may have answers, suggestions or support to offer.
 
Take good care.
 
Also, welcome deb!  So kind of you to offer your support, and glad to meet you too  :-) .  All best.
 
 
 

Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 10/12/2004 12:58 AM (GMT -7)   
Thanks Donna!
So kind of you to take time to offer your support.
I'm sorry to hear about your son, but he is lucky to have a mom who will do whatever she can, to help him feel better. I hope you can find the info you need for your daughter. Take care, and best of luck.
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums


unaware
New Member


Date Joined Sep 2004
Total Posts : 7
   Posted 10/14/2004 3:18 AM (GMT -7)   
Thanks Brynn and Donna for replying to my messages, the sites you listed brynn were great help. And donna as a mother myself, i know how hard it is when you know your child is ill and no one listens. I think your a wonderful mother and doing a great job. For the past two days i have felt alot better myself, but as usual i don't expect this to last so i have been doing as much as i can so when the fatigue sets in again, i hopefully won't feel so overwhelmed by things that have to be done - fingers crossed i will have already done most of them! I saw the doc again on monday and she is refering me for some more tests. Thanks for your replies and deb i have not forgotten about you i will be in touch soon xxx

meganklauer
New Member


Date Joined Oct 2004
Total Posts : 1
   Posted 10/27/2004 9:17 PM (GMT -7)   
Hi. I am not sure how this all works, but my older sister has been suffering some unusual symptoms and is currently going through tons of different tests and have found nothing yet. She suffers from pain on the side of her head, headaches, she says that she is tired most of the time,has incredible pain in her knees, and says she just aches all over. She is only 28 years old and when I saw her tonight she couldn't hardly stand on her knees very long. My first thought of course was lymes disease especially because we live in the midwest. She has been tested twice and both came back negative. Last Saturday she was taken by ambulance to the hospital because she had shortness of breath and she said her heart was racing. Her blood pressure was low and when the nurse had her stand up her heart rate became faster. I had never heard of Cronic Fatique, but just reading a few things, it sounds so much like my sister. How did some of you find out that this is what you have? She is going through so many tests and with her husband being a farmer they don't have health insurance. Any help would be great! Please email personally if possible: meganklauer@yahoo.com
Thanks so much!

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 11/1/2004 4:31 PM (GMT -7)   
Hi Megan,
Welcome to HealingWell and the CFS message board! I'm sorry to hear about your sister, and hope she gets a diagnosis soon, along with a good treatment.

The symptoms you describe don't sound like a typical case of CFS, to me. Although, as I said, I'm not a professional. You will be able to find the diagnostic criteria for CFS (also known as CFIDS) at most of the websites to which I posted links, above, in my reply to "unaware". On those sites, look for a link to "diagnostic criteria". Those are the words they use to describe that information. You may see lists of many, many symptoms, but the worst symptom (or one of the worst) is overwhelming fatigue. Any primary care Dr can diagnose it, if they have or know those diagnostic criteria.

Good luck.
Brynn
 
Moderator for Chronic Pain forums and
Chronic Fatigue Syndrome forums

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