how to bring up Cfs to your doctor

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Regular Member

Date Joined Oct 2011
Total Posts : 120
   Posted 10/5/2016 8:18 PM (GMT -6)   
How you go about discussing possible Cfs with your doctor? I have several
things going on such as hypothyroidism, hashimoto's, raynaud's disease, fibromyalgia, and just recently lichen sclerosus. I am constantly tired and not just the tired that you feel like you cleaned out the garage, but worn out can take a nap at nearly the drop of a hat tired. I was in a high stress job thinking that might be seriously effecting me which it was, but I recently found a new job and less stress but still feel so yucky. I cling to coffee and soda throughout the day. The last few weeks I have been having sore throats in the morning. I keep telling myself its allergies. I want to discuss this with my doctor cause I find myself nodding off at work and even at stop lights.

The thing is I don't want the brush off so a lot of time I dont let on how bad I really still feel. We have finally leveled out my thyroid level am taking 200 mcg of levothyroxin so why the heck do I feel run down so much of the time? I feel like everyday is a battle fighting my way through with cement blocks on my feet walking through hello. I just want to wake up for once and say I feel great. I haven't had a morning like that in years. I need a nap just before heading to work, I am exhausted by the time I get home from having to be on all day. I know so many symptoms can over lap, but I know when my body says something still isn't right. When do you finally bring it up? I have a great endrocologist so I think he would listen. I just want my energy back. I want life back. When do say enough is enough and don't brush it under the fibromyalgia rug. I dont stay asleep at night and wake up so sore in the mornings just frustrated with all of this. I dont want to be the difficult patient.

Any suggestions would be welcomed...clam up or open up to the doctor?

Regular Member

Date Joined Oct 2011
Total Posts : 120
   Posted 10/7/2016 6:35 AM (GMT -6)   
Does anybody have suggestions as to how bring this up to your doctor without getting the brush off? I wouldn't have posted if wasn't looking for suggestions.

Veteran Member

Date Joined Jun 2008
Total Posts : 731
   Posted 10/10/2016 3:34 AM (GMT -6)   
When i was trying to figure out what was going on with me I did a lot of looking things up on the internet. I would then take printouts to my Dr. & she would tell me that it was a possibility or no we have already tested for that. You need to make sure your Dr. is knowledgeable about CFS, there are still a lot of physicians who don't think it is an actual illness. I ran into a few of them, we all have. I would print out a few things on CFS & take them to your Doctor & tell him/her that this is how you are feeling. Getting a diagnosis of ME/CFS takes a while & lots of tests but you probably have done a lot of them already. It is a process of elimination, testing for everything else it could possibly be & eliminating it. What you have left is ME/CFS. If your Dr. doesn't think it is an illness then move on to another, keep at it if you truly think you have CFS. Sorry it took so long to respond, this is not a very active site. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

Regular Member

Date Joined Oct 2011
Total Posts : 120
   Posted 10/12/2016 6:40 AM (GMT -6)   
Thank you for the words of encouragement. I intend to do just that. My appointment is next thursday so I want to make the most of my time with him. I also want to ask him about supplements for fibromyalgia. It's tough though cause so many of these symptoms can cross over to other things so sometimes I don't speak up as much as I probably should at appointments. Im not doing that any more. I do feel I have a good endocrinologist that will listen and maybe have some fresh ideas to help me feel my best.

New Member

Date Joined Oct 2016
Total Posts : 19
   Posted 10/16/2016 2:46 PM (GMT -6)   
sry for my POOR english: im doctor (immunologist,special for andrological EAU/ESAU Guidelines) from no USA//
im testing my patients CSF by Holmes methods:
I have 3 groups
1.main symptoms 2 items
2.shower symptoms 11 items
3.physical symptoms 3 items

for positive CSF is enough for me this steps.

1,group both 2 items+6 items/11 from 2nd group and 2 psysical/3 from 3rd group or 8/11 w/3rd group

if you wanna,i can write here all 2+11+3 items what i know for long time my prax/exp

Regular Member

Date Joined Nov 2014
Total Posts : 422
   Posted 11/28/2016 5:17 PM (GMT -6)   

I know this thread is a bit old, but I saw your post and wanted to respond in case you hadn't found your information. I put together a list of things to do a while ago and will post below. I am adding heart rate monitoring to this for my somewhat newer CFS symptoms, but have not updated it yet. I apologize for its length. I am not best known for my brevity :)

Checklist for doctor's visits
1. Write down everything you are experiencing in an easy outline format for yourself. It is easiest to keep this on a computer.  Remind yourself to update this regularly.  You will remember different things at different times.  Keep a notebook near and jot down anything that occurs to you.   This will help you when the doctor asks questions and you cannot remember the answers. You may not remember everything during the doctor visit.   I know this sounds like homework, but it is necessary.   We have so much else going on in our lives, that this is critical.

2. List length of time you have been experiencing each symptom. 
Many symptoms don't mean anything until you consider them in the context of how long you have been experiencing them.

3. Describe what the symptoms are doing to your quality of life
(i.e. I can no longer stand for more than 5 minutes, I am unable to do the dishes, I am unable to sleep more than three hours at a time, I can no longer write my name, etc.).  Be extremely specific and don't be embarrassed by anything you have to tell them.

4. Take a list of all your medications , vitamins and supplements with you. If it is a longer list, color code by what they are prescribed for.  Many times the doctor will forget what they have prescribed for you.  They will definitely forget what other doctors have prescribed.  Make sure it is in front of you and easily readable.  It helps limit the chance of getting to the pharmacy with an issue.

5. Don't ask to be put on medication.
Many people go to the doctor and ask for medication.   This leads doctors to believe you are not there for help with your issue, but simply to get drugs.   Ask what can be done to alleviate the issue(s) you are experiencing.   There are other options to be considered.  Be prepared for a good doc wanting to get tests run and/or have you see a specialist of some sort. A bad doctor generally won't bother. (I have a couple of these I am changing out).

6. Download a body outline from the internet for front and back
Mark all the areas you have problems/pain with. I recommend color coding as well. It is a memory aid for you as well as a good visual for the doc.  

7. Keep everything in a folder on the computer if possible. 
Update before and after each doctor visit with dated entries.    Add an entry every time any little thing occurs with your medical (new med, etc).  Make yourself an appointment to update conditions at least a couple of times a week and add things like how the weather is affecting you, how you dealt with a stressful situation, etc.

8. Keep everything in a simple cardboard folder you can carry with you.
Print new copies of any updated item.   Print a copy of your medical log with dates.  Print a current copy of your medication list to give the doctor at each visit.

Above all, stick to your guns!   This is NOT in your head.   You are there to communicate what you are feeling/experiencing.  You are the person who was there for every feeling and issue you are discussing with your health professional.   You may not know what all the pieces mean - but that is why you are at that visit to talk to the doctor.    If they are not doing their job, you are in the wrong place and it is time to find another doctor. My primary gave me a stern talking to when she began to help me with some of this - they may be medical specialists, but they work for you. You wouldn't keep a plummer if they were ignoring the leaks in your house but still charging for the house call. (it helps me laugh and relax to think of it this way).

Fibromyalgia, CRPS/RSD, IBS/D, Diabetes, Eczema, Arthritis, Sleep Apnea, Chronic Insomnia, CNS, CFS
Meds: Tramadol, Lyrica, Simvastatin, Lisinopril, Tizanidine, Nadolol, Hydrochlorothiazide, Rozerem, Lexapro,

Post Edited (Firefly18) : 11/28/2016 3:26:59 PM (GMT-7)

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