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Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 4/14/2006 2:37 PM (GMT -7)   
Well Everyone!!!
I've been moderating this forum for a while...never really understanding this disease,
but knowing that I do suffer from some amount of fatigue with the Fibromyalgia, that I would
help out here. Well I am now one of you...I was just diagnosed with CFS 2 days ago, so now I
get to learn even more about it.
If any of you have any advice for me I would be more then willing to hear it.

Thanking you all in advance!!!
Mel
Co-Moderator for Fibro
Moderator for CFS
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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/15/2006 6:50 PM (GMT -7)   
Hi Mel. I help moderate the lupus forum, but was diagnosed with CFS long before I had symptoms of lupus. It's sad to say that I know way more about lupus than CFS and I have had CFS much longer.

The only advice I have is probably the same advice you get for fibro, which is to pace yourself and listen to your body. The big difference I have read about between fibro and CFS is exercise. I think exercise is encouraged and is good for fibro. WIth CFS exercise is encouraged if your body can tollerate it, but a lot of people with CFS feel worse with exercise, so it's a difficult balance because you want to exercise so you don't have any muscle wasting.

I'm curious how your doctor diagnosed CFS for you. I don't know much about the diagnostic process. THe doctor who diagnosed me in 1991 didn't tell me what he thought I had and I left the appointment with him feeling very discouraged. I was seeing a counselor at the time because I was feeling so discouraged about feeling so tired and sick and having fevers. She got a copy of my medical records and told me that the doctor had diagnosed me with CFS. MY diagnosis came a few years after the medical community first started recognizing and diagnosing CFS. I never had a follow-up with that doctor and didn't think there was much anyone could do for my symptoms. After a few years I pretty much went into remission and had a fairly normal life aside from needing more rest than the average person. about 2 1/2 years ago I got really sick and have a lot of labs and symptoms that indicate lupus, but my rheumy also thinks my CFS is also back in full force.

I have done some reading and I think there are a lot of similarities between fibro & CFS, but there are also differences. I know that some people speculate they are the same illness, but my personal opinion is that there are very real differences between the two.

Anyway, that's my story. Is your doctor going to change anything or add any meds for your treatment?

Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 4/15/2006 10:52 PM (GMT -7)   
Thank you for the advice!!!!!!!!
I think she got her diagnosis from running blood work on me and pulling all my old files
from my previous doctor.
She had really seemed to have done her homework, she knew all the medications i've been on and tried.
We haven't talked anything meds wise except for sleep. She has me on gravol and benedryl for now
to see how that works.

I'll ask her next time I go in (because i'm getting more blood work) what we can do for this and how I can start
getting some help.

I'll keep you informed :)
Thanks again
Mel
Co-Moderator for Fibro
Moderator for CFS
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ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 4/17/2006 7:24 AM (GMT -7)   
I think they generally diagnose these things by eliminating everything else rather than finding a particular thing wrong. The holy grail of these types of illnesses would be some kind of unequivocal somatic indicator, some pathogen the presence of which would indicate that we are sick. I remembe hearing that testing the brain tissuen of ME sufferers post mortem shows specific abnormalities; but as you have to be dead thats not much help.

Unfortunately theres not much money in fatigue so few medical researchers are interested in it.

Tofiga7
Regular Member


Date Joined Feb 2003
Total Posts : 28
   Posted 4/22/2006 12:13 PM (GMT -7)   

Foreign,

If you don't mind me asking, how long did it take before you got the diagnosis of CFS?  Did you see a specialist?  My 20-year-old daughter will be seeing an infectious disease specialist next month to be evaluated for CFS.  She has fibromyalgia and has been having so many problems with fatigue, viral illnesses with fevers and enlarged glands with sore throats, etc.  Her sedimentation rate is elevated but she tested negative for rheumatoid arthritis.  She just had a lot of blood work done to prepare for her appointment.  All of this is so confusing to me!  I hope we can get some answers.  Apparently, this specialist that we are seeing has been doing research on his own.  He has a personal cause too, his son has CFS. 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/22/2006 12:41 PM (GMT -7)   
Tofiga, it sounds like your daughter has had a lot of bloodwork done, but do you know if anyone checked her ANA? A positive ANA can indicate possible autoimmune diseases like lupus. Something is definitely going on with her based on her symptoms. I hope this new doc can help.

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Relafen 1000mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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


Tofiga7
Regular Member


Date Joined Feb 2003
Total Posts : 28
   Posted 4/22/2006 12:56 PM (GMT -7)   

hippimom2,

Unfortunately, the lab (not the drawing station) messed up big time and all her original blood work that the specialist wanted wasn't done, including the ANA.  Our primary care doctor caught the error and we had enough time to have it all repeated before her May 17th appointment.  I'm just praying they don't repeat the error!  It took us three months to get this appointment with the specialist and it would almost be a waste of time to go to the appointment without all the requested blood work. 

Our whole family (on my side) has pretty significant health conditions.  I have Crohn's, fibromyalgia and a history of thyroid cancer, to name a few.  I feel bad because she has been dealing with very strange issues since she was little.  I went back and documented her illnesses as much as I could so when we go to the specialist I can show him everything.

Thanks for the input.  I need all the help I can get when dealing with this.

Foreign
Veteran Member


Date Joined Jul 2004
Total Posts : 674
   Posted 4/23/2006 8:16 AM (GMT -7)   
Hello Tofiga!!
I've been fighting for 6 years to get some sort of diagnosis from my doctor!!!
Now that I have a new one she's actually doing more work, I never thought I had CFS but
just the Fibro.
So I guess to answer the question...6 years.

I'm still goin for more blood work so i'll let you all know how that goes.

Later Days.
Mel
Co-Moderator for Fibro
Moderator for CFS
Please make HW donations @: http://www.healingwell.com/donate
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hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/23/2006 11:15 AM (GMT -7)   
Tofiga, my little 8 yr old son has been battling health problems for the past year and a half. It started out with a case of mono and the pain and fatigue never went away. He has a positive ANA, elevated sed rate and an elevated ASO. There aren't any pediatric rheumatologists around, so we had to take him to another state and the ped rheumy is working on a diagnosis. It turns out he has really limitted mobility in his joints from the hips down. It's frustrating to have to deal with these things for so long and not be able to get a diagnosis. At least the peds rheumy recognizes that something is definitely wrong.

I'd be really interested to hear how things go at your daughter's appointment.

Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Relafen 1000mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

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


Tofiga7
Regular Member


Date Joined Feb 2003
Total Posts : 28
   Posted 4/23/2006 7:19 PM (GMT -7)   

Hippimom,

I had a nice reply all typed up and (BAM!) my whole message deleted!  I don't know what I did.  Anyway....let's see if I can reconstruct what I said.  I am sorry that your son is going through all this and it is a shame that you had to go to another state to find a specialist.  It shouldn't be that way.  From what I understand though, the majority of the medical community doesn't acknowledge CFS.  Do you ever wish he could just be a child and not have to experience all this?  I know I feel that way about my daughter.  With her, I wonder where the starting point was.  She has had so many illnesses, symptoms and tests (both invasive and noninvasive) since she was young.  She has IBS, allergies and asthma, hiatal hernia, esophagitis, ovarian cysts, anemia, fibromyalgia, interstitial cystitis, and then for the last two years she has had intermittent fevers, body aches, chills, sore throat, swollen glands, fatigue.  She goes through these cycles where she gets a viral type illness with those symptoms for about five days and then she gets better except for the body aches and swollen glands.  She had what they thought was mono a couple of years ago but she tested negative. 

I have my long list of questions for the specialist.  I will sure let you know what I find out and you do the same, in regard to your son.

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