Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
I need your help!
I plan to call my doctor's office and make an appointment for the first available time he has to discuss CFS. I do plan to take my husband along on this visit so he can back up everything I tell the doctor.
For over eight years I have suffered with extreme exhaustion, trouble sleeping at night, joint and muscle pain, depression from all of this, and guilt! ( I wasn't aware my sore throats and headaches were associated with all of this.) I have mentioned this numerous times to my doctor, as well as some specialists I have been referred to see. However - not a one of them has taken me seriously. They may have ordered a blood test, but when all comes back "normal" that is the end of that.
I work full time, but many a day I could curl up under my desk and fall fast asleep. I'm too tired to cook dinner and do very little after I come home from work at night. I do manage to keep up the house with my husband's help. This is not the "old" me at all. I have cried in frustration knowing something was wrong, but not knowing where to find the answer.
This week I received an e-mail from Health.com. The article was "How to Diagnose 13 Difficult Conditions" and it went on to "13 Conditions that Mimic Fibromyalgia". One of the conditions listed was CFS. It was like a good/bad thing!
After reading the article and all the information I could on CFS I was so excited to share it with my husband and tell him, "That's me!".
Now - I need to know how you handled this with your doctor. My doctor just told me on my last visit that he does not like to label things for people because he feels it causes them to live their life differently once they know. (We were discussing my essential tremors developing into Parkinson's Disease.) Besides nailing him for not listening to me the past few years what are the issues you have found helpful to discuss with your doctor? Should I request a referral to a specialist? Request a certain medication? Any advise you have would be so helpful to me.
I plan to call my doctor's office and make an appointment for the first available time he has to discuss CFS. I do plan to take my husband along on this visit so he can back up everything I tell the doctor.
For over eight years I have suffered with extreme exhaustion, trouble sleeping at night, joint and muscle pain, depression from all of this, and guilt! ( I wasn't aware my sore throats and headaches were associated with all of this.) I have mentioned this numerous times to my doctor, as well as some specialists I have been referred to see. However - not a one of them has taken me seriously. They may have ordered a blood test, but when all comes back "normal" that is the end of that.
I work full time, but many a day I could curl up under my desk and fall fast asleep. I'm too tired to cook dinner and do very little after I come home from work at night. I do manage to keep up the house with my husband's help. This is not the "old" me at all. I have cried in frustration knowing something was wrong, but not knowing where to find the answer.
This week I received an e-mail from Health.com. The article was "How to Diagnose 13 Difficult Conditions" and it went on to "13 Conditions that Mimic Fibromyalgia". One of the conditions listed was CFS. It was like a good/bad thing!
After reading the article and all the information I could on CFS I was so excited to share it with my husband and tell him, "That's me!".
Now - I need to know how you handled this with your doctor. My doctor just told me on my last visit that he does not like to label things for people because he feels it causes them to live their life differently once they know. (We were discussing my essential tremors developing into Parkinson's Disease.) Besides nailing him for not listening to me the past few years what are the issues you have found helpful to discuss with your doctor? Should I request a referral to a specialist? Request a certain medication? Any advise you have would be so helpful to me.
When I first started feeling poorly back in the early 90's CFS and Fibromyalgia were not as commonly known as they are today. I went to the doctors and the ER even and was told "You are just depressed". I actually told my one doctor "Well hell yes I am depressed! You would be depressed too if you were my age and felt like this!" ( I was in my late 20's then). I was tested for Lupus and Epstein Barr Virus and although had a positive ANA on the lupus testing, it was not truly conclusive to diagnose that. I did have the EBV virus though and was thrown on the CFS/Yuppie Flu band wagon of the 90's fame. I can not recall when I actually got diagnosed with the fibro..hmm I am sorry my memory is failing me.
Anyway, long story shorter....although I did spend many of the years in between then and now dealing with the fatigue and the fibro pain, I also had good years or at least months in there...looking back it seems I was actually "healthy" then compared to now. So maybe that means one can go into remission of CFS? I don;t know.
Now, however, I am not in a remission...but am not truly sure what is wrong exactly in my body. It has been virtual hell these last two years and it started up due to steroids I was put on that then made me adrenally insufficient.
AI also causes a lot of the same symptoms of CFS so I am not sure which to place "blame" on, if you will.
I MAY have been adrenally insufficient prior to the steroid treatment..I have read articles on CFS that talk about low cortisol levels...and some other cross over issues like low blood pressure etc which I have had in my youth.
You may want to ask your doctor to check your cortisol levels. You can do a few tests to check this, a few of which are relatively simple blood tests.
I PRAY that you are not adrenally insufficient because at least for me, it has been by far the worst illness that I have had to contend with.
Have you had your thyroid checked? You mentioned having normal labs and I am guessing you have had thyroid panels done as many doctors will actually check that without prompting. Low thyroid does cause a lot of fatigue and some other symptoms that can be similar to CFS.
I apologize for rambling on..I am very tired this morning but did want to let you know I know how you feel and how rough it can be to get the help you need.
I hope you have a good appointment with your doctor and that you get some answers!
Perhaps it's time to see a new doc.
You might ask your doc to refer you to a rheumatologist.
Hang out on the boards, ask questions and read the posts. There's a learning curve but you'll get there. CFS and fibromyalgia often go hand in hand so you might try the FM board, too.
Be aware that many of us have drug sensitivities/intolerance. I'm one. I mainly use supplements to deal with it - the drugs simply mess me up.
Research any drugs before you try them.
Coping is about all we really have. Meditation, yoga, tai chi, healthy diet, etc. De-stress your life and relax. Here's a pretty good website:
http://www.inspiredliving.com/relaxation-products/relaxation-tips.htm
And as for diagnosing CFS, it is I think still based on if you meet a certain number of the symptoms as criterion to base the diagnosis on...it used to be that way.
She finally did a blood panel and when a very low Vitamin D level showed up, she diagnosed CFS. Now I am on a regimen of Vitamin D, celluar response therapy and gradual exercise program.
While I don't feel back to "normal" yet, I feel like I am on the right path and its nice to know what's going on in my body!