I am So Confused

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riverlily
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 2/26/2007 6:36 PM (GMT -7)   

Hello
I Am a new Member
I was hoping for some help,i am 20 years old and i have been to conventional doctors,neuopaths,herbalists,i have had accupuncture,tried 50 dirfrent diests and tried so many things  i feel like this is ruining my life and i still have no clear diagnoses.

I was hoping that someone could help me?

it all started when i was 13 years old i was constantly tired and always sick as if i had a cold,the doctors said i had a sleep disorder and i had treatment which included long stays a the sleep disorder clinic and what felt like a hundred diffrent drugs which would make me more drowsy but i still could not get a refreshing sleep,after three years of this i was told it was a mental illness and all in my head, i became depresed as all my friends could play soprts and i could hardly pull my self out of bed my mother was desperate to to help me and spent her days talking to doctors neuropaths,herbalists,and child physcoligists,they put me on diets ,vitamins,and accupuncture once a month but nothing helped.

I had to be home schooled as my grades were suffering as i would have "micro sleeps" when it was so bad that i was hardly sleeping at all and if i did get a "good"sleep which could last 30-40 hours i would still wake up as if i had done a ten km run, I am now 20 and my loving fiance is so supportive but i am so sick of this and as i now live in a tiny country town with one doctor that says it is just stress i dont know what to do,a family friend suggested that i could have chronic fatigue syndrom i was hoping that someone could suggest a solution.

Thankyou for taking the time to read this and i really hope you can help me return to a normal life.

PS sorry about the bad spelling.


arwin_undomiel
New Member


Date Joined Feb 2007
Total Posts : 15
   Posted 2/26/2007 9:25 PM (GMT -7)   
Hello Riverlily, Sorry things have been going down hill. Keep looking for a physician that is going to listen to what you are saying and look at the past medical history. Talk to nurses!!! I know they don't have that MD after their name but they may be able to suggest physicians that they see working in the hospital and perhaps have worked on similar cases.

I know how fustrating it is to be told it is in your head, you are exagerating, it can't be that bad... I also know that it makes you want to scream when you feel like no one is REALLY listening and that you have to go find someone that will. Shouldn't they all listen? I know that others on here will have wonderful advice for your as well. They have decades of combined experience. Best of luck.

Angie

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/27/2007 8:00 AM (GMT -7)   
Hi Riverlily and welcome. I am so sorry you have been going through this for so long and I can understand how frustrating and discouraging it is. First of all, let me tell you that it is NOT in your head and what you are going through is very real and has some sort of physical cause. It is so frustrating that just because something does not show up in labs that doctors dismiss you and say that nothing is wrong. When nothing shows up in labs, most docs seem to want to dismiss it as emotional or stress related. What you are going through is very real and your symptoms need to be adressed. Somewhere oout there is a doctor who will listen and will help, it just sometimes takes a long time to find one.

you will find a lot of people here who can relate to you and you will find a lot of support. Read some of Orion's posts about what he has been through - I think you will be able to relate. Also, you might want to consider the doctor he has been consulting with. It's long distance and done by phone, but she has been helping him when no other doc has been able to. It's something to think about.

Please ask any questions you have - we'll try to help in anyway we can. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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Co-Moderator: Lupus and CFS Forums



pasara
Regular Member


Date Joined Apr 2006
Total Posts : 206
   Posted 2/27/2007 11:50 AM (GMT -7)   
Hi Riverlily. I don't have much more to offer that has not already been said, but I did want to welcome you to HealingWell Chronic Fatigue forum, and say that I hope you continue to post, ask questions and share your experiences. There is a great network of people out there all dealing with a lot of the same issues. I know just having a place where people listen and understand has made a big difference for me.

Don't give up. Keep looking for a doctor who understands. This will probably mean looking in a large metropolitan area. Small town family doctors are great when it comes to day to day illnesses and forming relationships with families, but CFS or any severely acute or chronic illness, requires care that is specialized and up to date. By going to a large city you are more likely to find someone who has encountered similar problems in others.

Questions: What ever happened to the sleep disorder theory as the source of your problems? Also, have you tried any alternative or complementary treatments?

I'm really sorry you have had to deal with all this crud, especially at such a young age. ((( Big Hugs!)))
pasara
co-moderator CFS forum

"We don't see things as they are, we see them as we are."


- Anais Nin


sparker
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 2/27/2007 1:15 PM (GMT -7)   
Sorry you're not feeling well too.

Do you have any pain associated with your tiredness at all, like painful neck or joints, etc? Are you cold at all, as in cold fingers or feet? Any other symptoms that have come up other than the general tiredness?

riverlily
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 2/28/2007 2:20 AM (GMT -7)   
Thank you all for your support and comments,
I reply to your questions,The sleepdisorder clinic could find no clear reason,which was frustrating as at least if you know what your problem is it is easier to cope with and treat,

Ialso get aching joints espisically neck pain,i have tried support pillows and maagnetic therapy, nothing seems to help a my symptoms come and go as if there in a cycle the worst is when i get a sore throat and such bad headaches right behind my eyes which is made worse by being so tired,i find that over the counter pain killers such as panadol and neurophen dont work any more,

If any one has any alternative treatments which help them it would be wonderful to ry some thing which will hopefully help me.
I have found great comfort in hearing from and reading about people with simaler issues,i now feel as if i am not alone,Thankyou all.

Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 2/28/2007 6:19 AM (GMT -7)   
Riverlily,

It is very possible that this is stress. Stress did this to me (Fatigue, neck pain). Granted, I don't have sore throats or headaches, however stress could effect people, in different ways. Not to mention, stress can have effects on various different pituitary glands that can cause immune problems, hence getting more colds (sore throats). Your headaches behind the eyes, I sometimes get too.... however I believe they're sinus issues.

Couple questions.

Have you gone through a long period of stress? (Car accident, change in jobs, moving, death, financial burden)

Have you felt better at all when this started happening, by taking a vacation, relaxing a bit more?

Since you only have one doctor, who sounds like he's not willing to help any more, you need to take this into your own hands. I would like for you to have a saliva test done. It's $150 out of your pocket. It would be a 24 hour test, so you would have to be somewhere comfortable to spit in a tube 4 times a day. Just the standard test will show Cortisol and DHEA-S. Cortisol is the essential hormone for daily life. Cortisol is the hormone that reacts when your body is under stress, working out, and even waking up.

Ever hear of Adrenaline rush, or fight or flight mode? This is a cortisol raise in the body to give you a boost when needed. Too much of this, like in stress, will cause the adrenal glands to become exhausted.

Here is a little more info on it

http://www.doctorbuxton.com/svc_adrenal.php4

Here is the link to ZRT labs website for the saliva test. They have nothing to gain from your results (pushing supplements, remedies) All they do is testing. I've recommened this test to Two other users on this forum, and it's made a world of difference. I've also finally started getting help, and within another week of being on my meds, should feel better.

http://www.zrtlab.com/Page.aspx?nid=12&action=view&category=2

You want to purchase the "Adrenal Function test"

Here is another link to Dr. Wilsons site. This will give you some more info on Adrenal Fatigue.

http://www.adrenalfatigue.org/


Come back and post your results when you have them. In the mean time, request copies of all your lab work that you've had done in the past 3 years. By HIPPA law, they're required to give them to you.

Once you have your results, post them on here. If they show low levels throughout the day, I can recommend a doctor to you that can help. She does phone consultations and is wonderful. She is a board certified MD and PhD from Stanford University. She isn't expensive and is the most caring doctor I've meet. She listens to you and wants your ideas as well.

Good luck, and keep me informed on how things go!

 

Post Edited (Orion82698) : 2/28/2007 6:25:12 AM (GMT-7)


pasara
Regular Member


Date Joined Apr 2006
Total Posts : 206
   Posted 3/1/2007 2:05 PM (GMT -7)   
Riverlily,
I have worked with a lot of different alternative therapies over the years, and have found them to be more helpful than anything mainstream AMA type medicine has had to offer. I do a lot of body work to help with pain and energy: massage therapy, osteopathy (inc cranial sacral therapy,) and chiropractic treatment. My problems have their source in the injuries I sustained when I was hit by a car, so they aren't the basic aches and pains from CFS, but very specific to my injuries. I think a really good massage therapist would be woth seeking out. Try to find someone who is trained in many different methods, who has a lot of expereince, and who also has a good understanding of energetic work. Not too floo-floo, but not a straight PT or mechanistic type person, I've never seen them do much good. The other therapy that has been really helpful to me as far improving my sleep, emotional life and overall energy is homeopathy. Again, you want to find a really good one. There are a lot of people out there who claim to know something about homeopathy, but really are not trained and experienced professionals with full training. The North American Society of Homeopaths (NASH) has a website, which might be a good place to start. The last thing that I have tried is acupuncture. I had never done it before, but it was recommended by my pain management doctor. I have so far gone for 4 treatments, and I have found it effective in the area of pain.
pasara
co-moderator CFS forum

"We don't see things as they are, we see them as we are."


- Anais Nin

Post Edited (pasara) : 3/3/2007 7:37:53 AM (GMT-7)


riverlily
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 3/3/2007 1:52 AM (GMT -7)   
thankyou for the information
i should have been more specfic of where i live i live in nyngan australia i am thinking of traverling to america as there a more doctors that know and treat cfs, i will look into all the things that you have ecomended
and once again thankyou all for your help during this time
riverlily

pasara
Regular Member


Date Joined Apr 2006
Total Posts : 206
   Posted 3/3/2007 7:44 AM (GMT -7)   
Riverlily,
I don't knwo where your specific town is in Australia, but I am sure all these treatments that I mentioned would be found in the larger cities. If you are interested in finding some altrenative practitioners there, I thought perhaps you could contact one or more of the Waldorf schools. There are several in Australia, NZ and Tasmania, and they usually have connections to all sorts of different kinds of healers through professional and philosophical connections and through their parent body. I don't know much about each individual school, but you could do a littel research and find one that is not too far away that is larger and more established. Here is a link to the Steiner Schools of Australia website. They might be a resource for you.

http://www.steiner-australia.org/school%20lists.html

Hopefully they can be of some help if you decide to pursue any of this. Good luck!
pasara
co-moderator CFS forum

"We don't see things as they are, we see them as we are."


- Anais Nin

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