Discussion in 'Fibromyalgia Main Forum' started by quanked, Sep 12, 2008.

  1. quanked

    quanked Member

    My dr. diagnosed me with FM Wednesday and I was diagnosed with CFIDS several yrs. ago. She told me she has not had success finding medical treatment for her CFS/FM patients in Klamath Falls, Oregon.

    I do not want to travel but it looks like I have no choice. I have read this message board for awhile now. I think it might be possible to find some relief. How much I do not know but I need to try. The quality of my life is not good. There are so many things I still want to do I just lack the energy and focus and so much more to follow through with any of my ideas or work. I have not worked (for pay) since 2001.

    Please, any help will be appreciated.
  2. annie4life

    annie4life New Member

    I just happen to have a dr's card right here on my desk...a Dear woman friend lives in Medford and wanted me to come see him...of course it was not practical as I live in California and I've already tried the phone treatment with the fibro and fatigue clinics...His name is David Dryland, M.D. Rheumatology 1365 Poplar Dr. Medford, OR 97504 541-773-2233...Best of luck to you Debi
  3. Missizzy

    Missizzy New Member

    Quanked--I live in Ashland and Dr. Dryland lives near me. He comes with very good recommendations. However, he's not for everyone. Check the archives and read the posts about him. He's a very strong supporter of exercise. For this very reason, my GP decided that I shouldn't see him. Instead, I was ordered to as much bed rest as necessary until I could be fully diagnosed.

    Dr. Dryland also has a website and a book, I believe.

    Best of luck,

  4. quanked

    quanked Member

  5. SGR

    SGR New Member

    Hi, I live in Eugene and I have to go to Portland to get help. Although Dr. Gambee in Junction City might be of some help. He does work with chronically ill people.
  6. SGR

    SGR New Member

    I hope I got your "name" close to right. I saw Dr. Goel once up at Providence. She was the meanest doctor I have ever met. She told me to stop seeing doctors and go home and exercise, that I would never get disability because no one believed in the disease. This after I collapsed in her waiting room from extreme low blood sugar. I was suicidal for two days after seeing her - not something normal for me. Fortunately I ignored everything she said. I got help from an endocrinologist at Providence and have gotten the most help from the FFC in Beaverton. I know the chain is controversial, but I would not be feeling as well as I am without them. They are very sweet people and they do not force you to buy anything you decide not to buy. I have found that most of the supplements I buy from them are cheaper than other sources due to their potency. Although, there are some of the supps that I have found for less money other places so I get them elsewhere. Good luck to you - SGR
    [This Message was Edited on 09/16/2008]
  7. NWStar

    NWStar New Member

    Thanks for your response about Dr. Goel. I thought it was just me she didn't like. NW Rheumatology Assoc. is on our health plan and I was given her by luck of the draw. Will not be going back. I found her to be abrupt and rather rude. But....she did diagnose me with fibromyalgia very quickly...something the rest of the medical profession was unable to do for 20 years. I guess my symptoms were too vague for a long time. One pain management doctor was on the right track, but did test after test and never quite figured it out. At least now I have a diagnosis. I got all my lab work done. All was normal except a little vitamin D deficient. She recommended I take 1000 IU Vitamin D suppliments forever.

    I moved to Oregon from Las Vegas about 3 years ago. Vitamin D was something we never worried about down there.

    Still looking for a fibro doctor in Portland area. Till then, I'm still going to my doctor in Vegas a couple times a year for chronic panic and anxiety and hip and leg pain.

  8. SGR

    SGR New Member

    FFC really helped with the anxiety thing by supporting my adrenal glands. They have me on cortisol, among other things. I was really out of wack that way, now I can tolerate more stress than I could certainly back when I first went there and even compared to last year.

  9. lucymay

    lucymay New Member

    Hi quanked,

    I haven't been to this site for a long time, but I came here tonight to see if anyone else has had luck finding a doctor in Klamath Falls. I've had cfs since 1980 (lived in KFalls the entire time) but have yet to find a satisfactory physician - and I've test-driven quite a few of them. I'm like you in that my quality of life is not good. I also experience dizziness, vertigo and migraines, and last year I developed tachycardia which is now under control. I have an appointment with a new doctor next month (in KFalls) and I'm crossing my fingers. I inquired first and was told this doctor sees a number of cfs patients, so maybe this is the one, I don't know. I hope we can keep in touch in case one of us 'strikes gold' and finds someone who can help with this illness

  10. quanked

    quanked Member

    Sorry you have the disease. Have you found a support group here? Who is the new dr.? Have you heard of Dr. Robin Rose in Ashland?

    I have not sought tx for these diseases specifically as all that I have read led me to the conclusion that there is no proven tx or cure. It seems like one can spend lots of dough on meds and supplements and dr.s and tests and so forth without much in return. Not to mention all the time and energy one has to spend in these pursuits. The thought of going to see an MD is very tiring. I found a great dr. at Open Door but she moved on (Raphael Alred--she moved to Bend) . Then Dr. Nehren moved on and now I am with Lamanuzzi. I like her--she is respectful, listens and seems to care-- but she is not a fm/cfs doc. I might ask her to consider the path.

    For several yrs. I kept waiting to bounce back, LOL. At some point I realized that I was NOT going to bounce back. Now, I am looking for some relief of some kind. The brain fog is debilitating and the horrible exhaustion is overwhelming. I have pain but somehow it is overshadowed by tiredness. If there is some relief to be had I want some.

    I just do not know where to find some relief. Glad to meet you Lucy May.
  11. lucymay

    lucymay New Member

    I just recently learned that there used to be a support group here which surprised me as I didn't know there were so many cfs patients in KFalls.

    I am not knowledgeable about any doctors outside of KFalls, so I'm sorry to say I don't know about Dr. Rose in Ashland.

    The doctor I'm seeing next month is at Klamath Pain Clinic. I actually called Open Door first as I heard good things about the doctors there, but they told me they weren't accepting new patients.

    I understand your reluctance to go through the whole merry-go-round of seeing doctor after doctor and spending a fortune on medications and supplements that might not offer much in return. At one point I stopped seeing doctors for a while. I guess I'm going through another phase of needing to find some help.

    My cfs was a sudden onset (mononucleosis). Was yours? I also experienced a sudden onset of vertigo in 1995, and those syptoms are still a problem for me.

    I'll let you know what I learn from the new doctor at the end of October.

    I'm still learning to use this new forum. Is there a way to send PM's? If so I will send you my phone number and email if you want to keep in touch that way.

  12. quanked

    quanked Member

    I do not know how people on the board exchange phone numbers or email addresses. It would be a comfort to have contact with another CFS sufferer. No one in my life really gets it. When my brain fog clears I will search the board for that info. I have been having a harder time than usual with my brain working properly. Not sure why.

    I know there are support groups outside of K. Falls but I do not think I am up to traveling on a regular basis. But, I suppose, for CFS sufferers a support group would be difficult. Many of us would be too tired to attend group : )

    My doctor is suppose to be finding me a referral to a doc that can help me with CFS and fibro. I think that I will ask to be referred to Dr. Rose in Ashland as I am almost sure that she will not find someone here locally. Rose is on the good doc list on this site. It is not the pain that wears me down (not usually) it is the exhaustion and brain fog that does me in.

    When I returned to school in 88' somehow I picked up mono during spring quarter. When Alred did some tests in 2002 or 2003 she asked me when I had mono. I said never. She said that the blood work said I did. She described the symptoms and I knew immediately when I picked it up. I was carrying a full load, working half time at the student paper and taking care of my 13 year old son. I became ill spring quarter (1989) and took a lot of incompletes. That period is a vague memory. I just remember how sick I was. I felt like my cells were melting into the floor--that I did not have the strength to keep all the parts of my body together. I had never experienced such profound exhaustion in my life nor since. I thought it was never going to end. I coughed all night, every night and I could not rest. If there were other symptoms I cannot recall them. I was in and out of student health services that entire quarter. I do not know why they did not pick up on the mono. Eventually I recovered. Then years later this doc tells me that because of this I now have a disease called CFS. I had had big plans for my life. CFS put an end to them.

    I do not understand how years later I can be infected with a virus but I am. In the beginning I ordered books, searched online and tried to find a way to get over this but the only thing I found was info telling me that there is no cure. The only thing I could hope for was a remission. In all my reading and research I learned that some people were spending a lot of time and money and energy but got very little in return. I marveled at the energy these people were able to put out to pursue better health.

    How long have you had CFS? Do you have support in your life from others? Do you take any supplements? Have you tried any alternative forms of treatment?

    If nothing else, for now, we can write back and forth here.

    Thanks for responding Lucymay!

  13. lucymay

    lucymay New Member

    Hi quanked,

    I didn't see anything on here about sending PM's, so I contacted the moderator. They said they will contact you via email, and if you are interested, they will send you my email address.