Doctor near Sioux Falls, SD

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CraftieKittie
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Date Joined Jan 2013
Total Posts : 11
   Posted 3/18/2014 11:37 AM (GMT -7)   
Does anyone know of a doctor in the Sioux Falls, SD area who believes this condition is real?
 
I saw one doctor who told me to start exercising and see a shrink.  I felt like she was telling me I was either lazy or crazy.  Then I saw a specialist in Fibromyalgia and she did a bunch of blood tests.  When the tests all came out normal she told me not to come back.
 
I just need to see someone who believes what I am experiencing is real even if they can't do anything about it.
 
Thanks.

Minnesota
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Date Joined Jan 2012
Total Posts : 136
   Posted 3/19/2014 7:28 AM (GMT -7)   
What is the background of your symptoms? Viral onset? I live in Minneapolis and know of a decent doctor here, but is not covered by insurance. But, without knowing more about your symptoms and background, you may need to see someone like a rheumatologist, or internal medicine doctor. I think Sanford is the big health care provider in SF, right? Finding docs who really believe in CFS is tough, but maybe you have something else that needs to be investigated as well, many other conditions have the same basic symptoms......

CraftieKittie
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Date Joined Jan 2013
Total Posts : 11
   Posted 3/21/2014 9:18 AM (GMT -7)   
I was diagnosed with CFS about 25 years ago.  I got mono and then never got well again.  Over the years my symptoms slowly improved so I was able to work - without being able to do much more than that, like have a social life.  However, the last few years I have crashed again and am really struggling.
 
I am very tired all the time, have no stamina (if I try to do anything physical I get exhausted and feeling sick), I have various minor aches all the time.  I struggle with insomnia.  My stomach is very sensitive to certain foods now.  My toes tingle all the time and when I am more tired they also ache.  I struggle with anxiety, depression and complete hopelessness.  If it wasn't for my husband I would just give up.
 
The doctor I saw recently was a Rheumatologist who specializes in Fibromyalgia.  After taking a number of blood tests to rule out other causes, she told me that I did not need to return to her.
 
I know there is no cure for this disease, but I just need a doctor who will listen to me and at least try something to help with some of the symptoms.  I think the hardest part for me is not being believed.
 
Sorry for all the depressing stuff.  I hope someone can help me.

Minnesota
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Date Joined Jan 2012
Total Posts : 136
   Posted 3/21/2014 10:40 AM (GMT -7)   
Actually that is how I felt after my Mayo visit.....no one there really seemed to believe what I was saying or tried to think outside the box. Actually my psychologist recommended a doctor in the Twin Cities who deals with rare conditions, and he has been wonderful. First time I actually felt like someone listened to me with the intention to help me and not just see me as another patient. Obviously I don't know much about you, but if I were you, I would get the sleep issue under control first. I have learned that without decent sleep, all the supplements/meds really don't do much. Sleep is the foundation for anything else to work. Then the mental issues. For me, warding off fatigue with treatment has a direct impact on my mental health. Goes without saying that when you are very fatigued you can't be chipper about much. There are many doctors who say with cancer patients that alleviating their fatigue is the #1 thing to allow them to be less depressed. Curious as to who dx'd you with CFS and if you still see that doctor. I saw a holistic doctor who was also decent in this area, but not being covered by insurance it became just too expensive. Other tests...thyroid? sedimentation? oxygen levels in the blood cells? hormones?

CraftieKittie
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Date Joined Jan 2013
Total Posts : 11
   Posted 3/21/2014 2:27 PM (GMT -7)   
I'd be interested in knowing the name of the doctor that you saw who deals with rare conditions. We may move back to the Twin Cities later this year and if so I would want to find someone there.

The doctor that I saw for many years after my diagnosis moved away and is now retiring, so I am without anyone who has dealt with me about this.

I am on thyroid medication - have been ever since my diagnosis. But I don't know what those other tests are - sedimentation or oxygen levels in the blood. Is that something a regular doctor would do, or even think to do? I've had my estrogen and progesterone checked and am low on progesterone, but I didn't get any help from supplementation. Are there any other hormones that might be important?

Thanks so much for your answers to my questions.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 3/22/2014 6:09 AM (GMT -7)   
I would try to get a referral to either an immunologist or internal medicine doctor. Have them run a full hormone test for you. Sedimentation is to see if there are signs of an active infection in your body. I also had a spinal tap early on to see if anything showed up there. Get all these done if you can, you never know what may show up. A known condition can give you a specific treatment plan. Dr. Mike Dole is here in Minneapolis would be worth a try if you get back up here. I am surprised your doctor didn't offer to have these tests done. Mention these tests to your new doctor, after all you are paying for them via insurance. Keep me posted. Again, with Sanford in SF I would think you could get decent medical treatment there?

kimberlyelizabeth
New Member


Date Joined Oct 2014
Total Posts : 2
   Posted 10/7/2014 6:47 PM (GMT -7)   
CraftieKittie-
I came across your post and am wondering if you have had any luck finding a good physician/practitioner/naturopath (anyone!) knowledgeable on treating ME/CFS in the Sioux Falls or Minneapolis area? I have found a supportive integrative medicine physician in Sioux Falls-Dr. Dawn Flickema at Avera Integrative Medicine- she is an MD, certified in holistic medicine, and does acupuncture, but her knowledge in ME/CFS specifically is pretty limited. I have not had any luck in the Sioux Falls area finding anyone with extensive ME/CFS and any leads would be greatly appreciated!! I am working on healing the root causes of the illness, so am doing a lot to improve gut and immune health, mitochondrial function and improve sleep quality, but am looking for more actual medical guidance in the area.

and to Minnesota- just curious what year you went to Mayo- I went in 2008 and it was just an AWFUL experience, they seemed 'thorough' but really knew nothing about the disease and the internist I saw literally said cognitive impairment and related symptoms aren't symptoms of CFS!!!...I've thought about looking into if their protocols for ME/CFS has changed or if they have gotten any physicians there with more knowledge who are up to date on research findings.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 10/9/2014 11:25 AM (GMT -7)   
I went to Mayo the fall of 2011, almost one year after my onset.  I saw a number of different specialists there, and came away with no plan whatsoever in order to deal with my "mystery" condition.  I think the hardest part was trying to explain all of these abstract things like fatigue and inability to exercise or think clearly.  Since those can't really be measured, the Mayo docs never took me too seriously.  I mean to look at me you would never suspect anything.  I could only tell them that after having run marathons I know that something was really off when running 2 miles felt the same as a marathon, and needed the same recovery duration!  Or that sleeping 8 solid hours wasn't enough for me to not need a nap a mid day in order to get through.  I am coming up on my 4th anniversary of coming down with this, and overall I have improved with a combination of medications (Adderall is a savior, allows me to continue working and exercising a bit), supplements (tyrosine, vit B, NADH, and D Ribose), and management techniques.  These things combined allow me to have a functional quality of life at age 51. Having relapses and remissions is so hard, because you just can't know what the future holds.  I have learned that having a doctor who listens and relates to you is huge. 
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