Question for Janis

[dreamchaser728]

I have a question for Janis, when you have a moment. I posted this elsewhere, but I think it got buried. So here goes...I do have a question for Janis.

Do you belong to NSAI (Nashville Songwriters Association International)? I know it's more geared towards the country side of songwriting, but I was just wondering. (Actually I found my old card, it expired 1/2001. I never renewed though.)

I actually have another question too. Do you have any recommendations on how to talk to my doctor about CFS? After I read your book, I realized a lot of the same symptoms (notably the high fluctuations in my temperature and not remembering common words.) She doesn't believe it exists. So I'm not sure what to do. Changing doctors is not an option at this time since I don't have any health insurance presently. This has been going on a couple of years and every test they have run has gone no where. Any thoughts?

Thanks!

[DaveM]

Dreamchaser--I too have CFS, and I believe there may be others on the board, though I am not sure and it is up to them whether they wish to discuss the subject or not. My own case started with what appeared to be "the flu" in December of 1980....the trouble being that it never really went away. My sister became ill at the same time and she too has ongoing health problems. She spent more than a year going through various doctors including repeated visits to the Mayo Clinic (she and her husband have money and very good insurance) and wound up with a diagnosis of "pseudotumor cerebri" which appears to be CFS for people who can afford expensive physicians and put up with a lot of tests including some that are really nasty. "Pseudotumor cerebri" is no more curable than is CFS, but it does at least allow you to impress your friends with the name.

Essentially, diagnosis of CFS is made by ruling everything else out, though there is as you will know all too well a fairly specific set of symptoms. In my case, after three GPs and an internist got the same result, I was referred to a psychiatrist, who confirmed their suspicions essentially by determining that I had no psychiatric problems (I do meet all the criteria for clinical depression and have a diagnosis of that as well--pretty much anyone with a chronic illness will at some point). The number of doctors who will formally diagnose someone with CFS and put that diagnosis on paper is, as you are discovering, limited. The progression, if one is patient enough, seems to be (in the words of an acquaintance): "you're lazy, you're crazy, ok, you're sick".

There appear to be almost as many "treatments" as there are CFS patients. I have gotten some minor relief from two antidepressants and several antihistamines. Meditation and "creative visualization" also seem to be of some help. Exercise has been recommended to me several times and has proven to be an absolute bust each time. I have also had acupuncture and a series of chiropractic treatments with no real results (though the latter fixed a long-time lower back problem). I have learned through experience that my blood sugar can "crash" unexpectedly if I go for more than a few hours without eating--it leads to me getting shaky and stupid, basically. A good dose of something with a fair amount of protein generally sorts that out in short order.

I do know that I am stronger than I was when this began. Through the mid 80s I had to rest for an hour after walking to my rural mailbox and back (about 500 feet) and at times could not lift a pillow off my chest. I now maintain a "slow but sure" schedule, doing the best I can within my physical limitations and allowing for being seriously scatterbrained at times. I have found it incredibly helpful to have a few understanding friends around who are willing to be patient with me and to push me just the right amount when I get into a rut. It is, after all, far easier to keep moving than to get moving.

While I cannot speak for Janis, I know she has worked with a chiropractor and takes homeopathic remedies, which I know little or nothing about. She may wish to share with you--obviously that is up to her. Meanwhile, I will be happy to answer any questions you may have from my own experience--just do know that it is far from definitive! Do feel free to contact me privately if you prefer.

[dreamchaser728]

Thanks Dave!

I directed it towards her, only because I know she has it, but I welcome any help I can get! I have been on anti-depressants for almost 5 years and they haven't done much. My muscles itch and ache and I am tired, plus the other stuff. Seems never ending.

[janisian]

Dreamchaser, yes I belong to NSAI, though not terribly actively I'm afraid.
As to the CFS, any doctor who doesn't believe it exists is a doctor I personally wouldn't trust. Even the CDC agrees that it exists. Have you really discussed it with your doctor, though? And does the doctor not believe it exists, or just not believe you have it?
Have they tested for all the other stuff to rule it out - parasites, Epstein Barr etc?
When I was diagnosed, I fit all but one of the CDC criteria. Your description could be loads and loads of other things. I'd try to get the doctor to figure out what's wrong, instead of self-diagnosing, myself.
Sorry I can't be of more help...

[dreamchaser728]

Thanks Janis!

I did discuss it with my doctor, she said, point blank, "Chronic Fatigue Syndrome and Fibromyalgia do not exist" she went on to say that the only way they are treated is to use anti-depressants, (which I have since found out, are not the only treatments out there) and I have been on them for about 5 years anyway. To make matters worse, my best friend says she is not sure if it exists either because another friend of hers (who is an EMT) says it doesn't that it is just "stress" (Sure it is... If that's the case, everyone has it..) Yeah I've been checked for everything under the sun in the last two years when I had some insurance, not much (and I have the lab bills to prove it! LOL!)

You did help me, I think I will ask my aunt (she used to be a registered nurse who now works in the research field. I didn't think of that until just now.) :( I know self diagnosis is not the way to go. I need some insurance, which would mean I could go to the doctor when I want and all that jazz.

Thanks again!

[dragonlady]

dreamchaser,

I can tell you that fibromyalgia exists. When I first got my diagnosis in the late 80s, it was a diagnosis of exclusion. I didn't have everything else that they tested for so fibromyalgia was the only diagnosis left that fit. Nowadays there are more firm criteria to diagnose fibromyalgia as a syndrome and I match on nearly all of them so the diagnosis from that long ago holds up now.

I manage it with regular visits to a D.O. for manual manipulations of my spine, neck, feet, diaphragm, ribs and whatever else is out of alignment and impinging on my central nervous system. I also see a massage therapist at least every other week, every week as I can afford it. I take very little pain medication but when I do it is some form of anti-inflammitory like Tramadol. I'm in a certain level of pain everyday, I just have to manage it so it doesn't get higher than my threshold to actually work and live during the day. I don't put up with doctors who don't believe that my diagnosis exists since I've had to live with it for so long and it isn't up to me to teach my medical caregivers how to do their job. I find the ones that understand the condition and see them.

I was lucky to be indigent at a university teaching hospital where I found a primary care physician that works well with me. Now I have insurance and I can still see her as my PCP when she transitioned to private practice.

Good luck stephanie,

-di

[dreamchaser728]

My gynocologist seems to think I have all the symptoms of fibromyalgia. (We never discussed CFS, but at least she believes it exists...:)) She has been pretty helpful. Unfortunately the doctors that she recommended were full and not accepting patients or were so full that it would be 6 months or more before I got in. So I went to a doctor my best friend recommended. I have muscle itching, pain, etc. Janis is right though, I shouldn't self diagnose. When I see my gyno again I may talk to her about it. Maybe she has other ideas. Thanks Dragonlady!

[hoops]

Stephanie, I would call your Gyno and ask if she has a dr she would suggest you see for CFS. Since she believes in it, she probably knows some good Drs who make it almost a specialty to treat. I too have fibromyalgia, these illnesses are very tough since they mimic so many otheres but they have certain qualities that are unique to the disease. there are many treatments out there, pain management will become one of them. I'm the kind who says less meds more therapy, but then i also have an inordinately high threshold for pain. I just don't like, and can no longer take all that junk in my body.
Call your gyno right away, she will be glad to help if she can. don't put off your pain.
peace
hoops

[dreamchaser728]

It's been a year or so since we talked about it so maybe she has some other names or specialists. Thanks!

[dragonlady]

If you have to, take the apointment 6 months down the road and get on their cancellation list. If another patient cancels and you have an existing appointment the office can call you and give you the canceled appointment...you've been fighting this on your own for what 2 years...at least you'll have that appointment to look forward to in 6 months. What do you have to lose? Two more years on your own?

My two cents...

-di

[Roady]

Dreamchaser,
Check out this link Pain Consortium - Helpful Hints on the Road to Pain Relief (http://www.ncfsfa.org/Patients/pain%20consortium%202009.htm)


Join us on the National Day of Action, Saturday, September 26, 2009 for a hands-on workshop designed for persons with pain and caregivers. Pain experts will share and demonstrate pain management tips and techniques, ways to more effectively communicate with your doctor, and how to be an advocate for change in pain management practices for yourself and others. You can also pick up free pain resource materials.

The event is free, but we do ask you to register so we can plan for lunch and refreshments

There's bound to be resources here that can lead you in the right direction. Kansas City, MO. doesn't look too far from KC, Kansas.

[DaveM]

Some doctors use "CFS" and "fibromyalgia" almost interchangeably and there is a certain amount of belief that they are related conditions or possibly different manifestations of the same condition. There is also the fact that "fibromyalgia" is accepted as a legitimate diagnosis by more people at present than is "CFS" (very helpful if one is applying for disability or the like). Fibromyalgia, after all, has a medication officially promoted for it (though I have no idea whether it works or not).

There are of course two different sets of symptoms involved here and two different treatments though also some common ground. But having someone who is willing to listen is a great help, and if they insist on using their own preferred name....so be it.

One of my neighbors of the moment has had CFS for a long time and has never found any real relief for it. I believe she is presently seeing a doctor who moved from Minneapolis/St. Paul to North Dakota, of all places. Minnesota was for a time something of a center of CFS research after a former governor's son had it and was very public about it. It's a long way from Kansas City (well, 45 minutes by air as I recall), but I can certainly look for some contacts for you if you like.