Dr thinks I have Chronic Fatigue.

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Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/17/2007 10:02 PM (GMT -7)   
Hi all.  I'm new here, as you may have guessed.
 
I have been suffering greatly for about a year now, with constant, crippling muscle pain and ache, and major blinding headaches with photophobia. But thats not all. I have some bowel issues as well which the Dr thinks is related.  (sorry, TMI I know!)
I sleep ALL the time, because it seems no matter how much sleep I get, its not enough.  The first Dr thought I was depressed, so started me on Anti Depressants, which didn't help at all. I also suffer from SAD - Seasonal Affective Disorder, but don't know if these are related?
 
When going to bed at night, I toss and turn for goodness knows how long, and then when I finally fall asleep, I wake up not long after and the cycle repeats itself.
I have found myself not wanting to go anywhere, because all I want to do is sit down or curl up in a corner and sleep.
During these school holidays my 10yr old son has fended for himself because I am always lying down, or sleeping or feeling so lethargic.
 
The Dr suggested I might have Chronic Fatigue, so I did some 'googling' but every site I go to has such varied ideas/thoughts on the matter, so I thought I would go to some ppl who actually knew what it was all about.  Ppl that actually have been through this.
 
So, what do you think?  Am I just stressed, exhausted and depressed? Or do I really have a problem here?
 
I don't care if I do, I just want to know so I can start to rectify the situation.  It's getting ridiculous.
 
Thanks
 
Kell

Post Edited (Kell Bell) : 1/17/2007 10:15:27 PM (GMT-7)


Loopy Pig
New Member


Date Joined Aug 2003
Total Posts : 17
   Posted 1/18/2007 8:48 AM (GMT -7)   
It sounds like text-book chronic fatigue immune dysfunction syndrome to me. I'd buy the book "From Fatigued to Fantastic" by Dr. Teitelbaum in order to get educated about the condition and cross-check your symptoms. But I know that the 2 major symptoms are not sleeping and muscle aches, without trigger points like in fibromyalgia. Then there are like 15 other symtpoms that some folks also have. I'm sorry that you may have this. It sucks. But there are some things you can do to improve how you feel. --ash

hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/18/2007 6:23 PM (GMT -7)   
Hi Kell and welcome. You very well could have cfs, but it can be hard to diagnose because these symptoms are present in a lot of illnesses. A lot of times it is a matter of ruling out other illnesses. There are a lot of doctors who like to attribute symptoms to depression if they can't figure out what is wrong - it seems to be the thing to do. I always tell docs that the only reason I feel down at all is because I don't have the energy to do the things I love to do.

My only other thought is the possibility of lymes disease. You can have lymes without knowing you got bit by a tick or having a bullseye rash. Also a lot of times lymes won't show up on blood tests - it's worth asking your doctor about it.

I'm sorry you are going through all of this - I know how frustrating and discouraging it can be, especially when you have children. I always have so much guilt when I tell my children that I'm too tired to do anything. I hope your doctor gets things figured out and can find something to help you.

Know that we are here for you if you have any questions or if you are having a bad day and need to vent.

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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/18/2007 7:01 PM (GMT -7)   
Thanks guys for your input.

I have had numerous blood tests, I feel like a pincushion, and seeing as nothing out of the ordinary came up, I think that is why the Dr suggested depression, because there was no other answer for him.

Thanks hippimom for your suggestions about lyme disease. Where I live, we don't have tics and i haven't been anywhere to pick one up. As for a bullseye rash...I'm not sure what that is! I will suggest it next time I'm at the Dr though. I seem to be going there a lot.

Thanks guys.

ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 1/22/2007 3:09 PM (GMT -7)   
Yeah you might do. What anti deps are you taking. My doctor put me on paroxetine which helped a lot, it mostly got rid of the muscle problems and improved my sleep cycles so i wasnt waking up every 10 minutes. It is actually used for cfs in a number of cases. In any case as your symptoms are so bad I would immediately go on an anti candida diet, that means cutting out all refined sugar, caffeine, anything fermented, alcohol, caffeine, no yeast! And see if it helps.

I found Post Viral Fatigue by Leon Chaitow to be very useful for diets.

Post Edited (ruggedtoast) : 1/22/2007 3:13:18 PM (GMT-7)


Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/24/2007 7:52 PM (GMT -7)   
Thanks Rugged. I actually don't take the a/d atm. They weren't helping at all. But when I was, I was taking Cipramil.
My diet has always been quite good anyway. I don't drink, smoke or take drugs. I actually cannot have caffiene as I have a heart condition. I don't mix certain foods like proteins and carbs, and sweets and acidics etc. I don't know if I actually have Post Viral Fatigue, as I haven't been sick in over a year, so I don't know exactly what is causing my fatigue. I have had some stress the past 8 months but that is all behind me now. I thought once all that was resolved I would start to feel better, but I just feel worse.

Its becoming a major problem. I've come interstate this week to visit a friend so she can look after my son and I can just relax, but that doesn't seem to be making much of a difference either.

I'm at my wits end here. I wake up in the morning, have a drink, then want to go straight back to sleep. Things don't get done, and then I get frustrated because they aren't. Its a horrid never ending cycle.

I will have a look at that book you suggested though. I'm willing to try anything if it helps.

Thankyou

graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/24/2007 9:01 PM (GMT -7)   
Hallo Kell Bell,

Sorry to hear that you are going through so much.

Many of us on the Lyme Disease forum have had the exact experience you described. Many of us (including myself) had completely normal blood tests and were prescribed antidepressants before we were properly diagnosed.

Many of us were told that we did not live in 'lyme endemic' areas so we could not have lyme. Actually, ticks and the illnesses they carry exist in every single state. It is the second-fastest growng infectious disease in the US after HIV-AIDS.

Because there are so many different strains of the bacteria that cause this illness, normal blood tests are not specific enough and not reliable. Most regular MD's are not knowledgeable about tick-borne illnesses.

People can be infected for many years - some even from childhood. Symptoms can lie dormant and be triggered by a stressful life event.

The 'good' thing about having Lyme Disease is that most people do recover from their symptoms with proper treatment.

I'm not saying you definitely have Lyme or anything, I'm just hoping that you will research this topic further and rule it out as a possibility. Please feel free to visit the Lyme forum in your search for answers. People there are friendly and knowledgeable and they like helping others.

Best wishes!

graceann
 


Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/26/2007 6:31 PM (GMT -7)   
Thanks Graceann,

I have done a little bit of research on Lyme disease, as someone mentioned it previously.

I live in Australia, and the majority of cases of Lyme disease have not been diagnosed in my state.

Apparently, LD in Australia, shares few of the epidemiological or clinical characteristics of US or European patterns of LD. Of course the information I am getting is only from the internet, because I haven't been to the Dr yet to suggest it, but I will. If not to find an answer, but to rule out a possibility.

Thanks again


Kell

graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/28/2007 8:03 PM (GMT -7)   
Cheers Kell,

Didn't realize you live in Australia

I hope you had a pretty good time with your friend and that you could relax a little bit. I know how crummy it is to be tired all the time and need to go back to sleep almost immediately after waking up. Horrible!

I hope you find answers really soon :)

(((hugs)))


 


Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/28/2007 10:07 PM (GMT -7)   
The trip interstate was nice, although I didn't find it nearly as relaxing as I had hoped. sad
Even though the plane trip is only 1 hr, and the time difference is only 30mins, between the two states, I found myself suffering severely from Jet Lag. Sounds silly but thats all I can do to explain it. I have another week off work before my annual leave finishes and I know how its going to be when I go back.

What have the rest of you done in relation to working while you are suffering? Have you been able to afford/have time off work? If I was to not work, we would not be able to afford to live, so it's not really an option for me.

graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/30/2007 6:46 AM (GMT -7)   
Hi Kell Bell,

It's hard to find relief, even when we are supposed to be 'relaxing' sometimes, isn't it? It doesn't surprise me at all that you had a 'jet-lag' feeling after flying. It does take quite a bit of energy to prepare for and take a plane flight.

Anyway, in regards to your question about work, I am working part-time now in the local library. I gave up my full time job when I first got sick.

Is there any possibility at all that you could take a short leave of absence as you try to find out what is wrong with you and create a proper treatment plan? You sound like me - I was physically distressed by my illness but the emotional stress caused by doctors and family not believing how sick I was made it almost impossible for me to concentrate and be productive at work.

I am not 100% by any means. I still struggle with fatigue and other symptoms. But i have a certain peace of mind in knowing what is wrong with me and being in treatment that allows me to muddle through the day somehow.

I am considering asking my full-time job to take me back now. I need the health insurance :P

Does your work know that you are not well?
 


Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 1/31/2007 4:12 PM (GMT -7)   
I have thought about taking leave, but with a 10yr to raise and support by myself, along with a host of debts, it is not financially feasible. I know I should be thinking of myself, for a change, but I just can't do it. If I quit work, it is to the detrement of my child, and I would rather be so exhausted I can't sleep, than put my childs future at risk.
Just to add to the stress of all this, Im having relationship troubles too, not related to feeling ill, but relating to my mistrust of my boyfriend.

Does everything always pile on top of the people who aren't equipped to deal with it? confused

Sorry, everyone, my rant is over.

eyes

graceannrose
Veteran Member


Date Joined Jun 2006
Total Posts : 561
   Posted 1/31/2007 6:21 PM (GMT -7)   
Kell Bell,

Do you have any family who could help you out at this time? Kell Bell ... it is not your fault you are sick.

I know that you worry about your child but nothing will be more detrimental to him/her than compromising your future health ... right?

I don't know anything about Australia but there must be government assistance programs that can help you. It is no shame to ask for help now that you need it. Perhaps you could get into a debt management program (that's what I did so I could go part time.)

Just anything to ease the burdern during the time you are not well. As for things or people who are hindering your recovery by causing you more stress ... well, Ms. Kell I think you know what's best in your heart.

I tend to feel horribly overwhelmed like you do, but each time I something came up I couldn't handle, the solution was just around the corner.

P.S.: You are free to rant all you like on the forum :)

Cheers,

graceann
 


Kell Bell
New Member


Date Joined Jan 2007
Total Posts : 7
   Posted 2/21/2007 4:00 PM (GMT -7)   
Well. I know its been a while since I last posted. Thought I might give you an update. I have been to numerous Dr's, therapists and goodness knows who else.

I have come across someone who deals with Patients with CFS on a DAILY basis! He knows the signs and symptoms, and all the different methods to help relieve the symptoms.
He also knows alot about depression and other psychological disorders.

After lengthy conversation, reviewing my test results, and conducting more of his own, he has come to the conclusion that I AM suffering from a mild case of CFS, but secondary to Post Traumatic Stress Disorder. It sounds odd I know, but after discussing everything with him, it already feels as if a weight has been lifted from my shoulders.
I am not sleeping still, but I am sure we will get to that.

The root of my PTSD stems from a serious (almost fatal) car accident in 2002. I recovered, after lots of rehabilitation and learning to walk again, enough to enjoy a successful career. Then last year in November, I was involved in another car accident in which we hit a Light Pole. This accident also involved being cut out of the car and transported off to hospital.

My Dr feels that this latest accident has just amplified all my emotions, stress, distress, from the previous accident. This is why he feels that if we treat the underlying cause - my CFS should ease somewhat dramatically.

I dont' know if this is going to work, but I am just so grateful to find someone who is willing to TRY and help me, and believes me that this is a real health problem and not just something in my mind - if you know what I mean.

I know this was long winded. Sorry. I just wanted to say thankyou to those of you who offered kind words and who understood exactly where I was coming from.

Thanks.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/21/2007 5:06 PM (GMT -7)   
Kell, that is such great news about your doctor. Finding the right doctor can make all the difference in the world and when they listen and give you some hope, it can really lift a dark cloud. I hope this doctor's approach works for you, he sounds like he knows what he's doing.

When you have time, we'd love to hear some updates from you. Take care and thanks for sharing the good news.
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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