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How do you deal with your incredulous GP in CFS-related issues?

V

Valentijn

Senior Member
Messages
15,786
Unfortunately, I started having the circulatory problems (extreme, almost constant light-headedness) a few weeks ago. And my current GP believes CFS is best treated with CBT.

I've signed up with a real ME/CFS clinic, but it will probably be at least a couple months before I have an intake appointment. And that will mostly just get me a diagnosis ... I don't think I can schedule appointments a week in advance, etc, if a new symptom flares up or anything.

So how do I go to my GP to get help with the light-headedness, since she doesn't believe CFS is a physical condition? And how do I explain that the problem is probably circulatory, since it's the same problem nearly everyone else with CFS has? I was hoping this was a temporary thing and I could wait it out, eat salt, and drink water, but it's getting worse if anything.
 
Nielk

Nielk

Senior Member
Messages
6,970
Valentijn said:
Unfortunately, I started having the circulatory problems (extreme, almost constant light-headedness) a few weeks ago. And my current GP believes CFS is best treated with CBT.

I've signed up with a real ME/CFS clinic, but it will probably be at least a couple months before I have an intake appointment. And that will mostly just get me a diagnosis ... I don't think I can schedule appointments a week in advance, etc, if a new symptom flares up or anything.

So how do I go to my GP to get help with the light-headedness, since she doesn't believe CFS is a physical condition? And how do I explain that the problem is probably circulatory, since it's the same problem nearly everyone else with CFS has? I was hoping this was a temporary thing and I could wait it out, eat salt, and drink water, but it's getting worse if anything.
Click to expand...

The way i see it you have two choices:

#1- return to your GP and DO NOT mention CFS at all, just explain your new symptoms which are not exclusive to CFS. Other people also suffer from circulatory problems.

#2 go to a different GP if you can.

good luck,

Nielk
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
Can you get any evidence behind you?

(like a heart rate monitor that shows problems with your BP). Or get someone to take your pulse rate in your wrist before and after lying down for 10/15 minutes?

I wonder if this is worth pursuing? i.e. what exactly do you expect your GP to do for you. It may pay to read some threads on the topic and see if it is worth asking for GP help or you can wait to be seen at the clinic.

A few UK patients I know have had tilt table tests and been referred to POTs consultants but I don't know what concrete help they are given in the end (that they couldn't learn here).
 
MEG

MEG

Senior Member
Messages
242
Location
Asheville, NC
Oh the GP's that think we all have depression or PTSD, or some other psych disorder.....GGRRRRRR

Sometimes no matter how much information you give them...they hopelessly continue with their beliefs...

I agree with ukxmrv....and nielk....go see the doctor to treat the light-headedness and don't mention CFS (this visit at least) ot try to find a doctor that believes in CFS.
My heart goes out to you.
 
V

Valentijn

Senior Member
Messages
15,786
Looks like I lucked out and can avoid the entire issue for now :p Called to make an appointment today after urging by my fiance and integration coordinator (we went in for a meeting with her to discuss options for learning Dutch while chronically ill). And my doctor is fortuitously on vacation next week, so I've got an appointment with one of the others. Yay! Sure it's still a coin-flip on whether or not he or she believe ME/CFS exists, but it's better than nothing :p

Also, it was great that my integration coordinator already knew exactly what ME/CFS was took it seriously. The coordinator for the volunteer work I do and everyone I work with has been the same. Why is it everyone (including the internist that diagnosed me) seems to know about ME/CFS and take it seriously EXCEPT my GP? :p It shouldn't matter, but getting that affirmation from people really does help with my self-confidence and determination.
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Valentijn said:
Why is it everyone (including the internist that diagnosed me) seems to know about ME/CFS and take it seriously EXCEPT my GP? :p It shouldn't matter, but getting that affirmation from people really does help with my self-confidence and determination.
Click to expand...

Maybe they dont like to think of it as like a "real' thing rather then something we are imagining as then they have to admit they were wrong. Also then it is a lot more work for them as they would actually have to learn about it and actually have to try to help you. :p

I agree what the others said.. maybe not mention about the CFS and just say you are very dizzy. At least then you are more likely to be sent to tests to make sure it isnt something else.

In the meantime (as the doctor thing may not work out) take your health into your own hands and research POTS. You can do your orthostatic heart rates to see if its that or not. IF it is POTS.. there are other things for POTS you can do too.

I do get POTS but when I had "constant" dizziness.. it turned out I had an issue with my neck which I hadnt realised. A chiropractor stopped my constant severe dizziness (with one treatment.. thou it did come back and hence i had to go a few more times). You may want to consider seeing one just once to make sure its not a neck issue causing it or making your symptoms worst.
 
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