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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How to respond to my doctor...

Messages
17
Hey...

I'm currently in dialogue with my GP through the patient portal. I've given her the IOM Clinician's Guide, links to info pages of Phoenix Rising, and I've referenced the Canadian Consensus. She thinks that ME/CFS fits, but won't diagnose me herself and insists that the best specialty to send me to is Rheumatology. I saw one Rheumatologist a few weeks ago who simply said, "have you tried coffee in the afternoon?" She also admitted she knew nothing about ME or CFS.

So now my GP wants to send me to another Rheum for second opinion. I wrote, "If you call ahead and discover that a rheumatologist here...treats ME/CFS, that would be great. However, I'm doubtful. Even (name of our local teaching/research hospital) has not updated their health library's info on CFS since the IOM report a year ago. If you do find someone, who says they know about it, I'm willing to see them. But if they are stuck in the old assumptions that antidepressants and (GET) are the way to treat this, then I'm afraid I won't be a very compliment patient. If, however, there is someone, even you, who can help me manage symptoms, I will be so grateful."

This morning she replied that she found another Rheum who is "very compassionate and would be a good choice. I am not sure where you are reading, but as far as I know and in my recent reading of up to date material, the mainstay of treatment for this condition is graded exercise therapy and antidepressants. There are a lot of other controversial treatments that are not widely accepted. So I cannot guarantee that he will have other options."

Would you please give me advice on how to respond to her?
 

Old Bones

Senior Member
Messages
808
She thinks that ME/CFS fits, but won't diagnose me herself and insists that the best specialty to send me to is Rheumatology . . . So now my GP wants to send me to another Rheum for second opinion . . . This morning she replied that she found another Rheum who is "very compassionate and would be a good choice.

@guvaika Have you asked your GP why she thinks rheumatology is the best specialty for suspected ME/CFS? If so, has she provided an answer that makes sense to you?

In my years with ME, I can't recall many, or actually any, rheumatologists who are considered knowledgeable about this illness. They do, however, often diagnose and treat (or attempt to treat) purely fibromyalgia patients -- not very successfully, I suspect. Perhaps this is why your GP thinks rheumatology is a good fit for you.

When I was diagnosed with rheumatoid arthritis several years ago, I became aware (through on-line forums such as this one) that rheumatologists are considered by patients to be among the least helpful specialties. My first rheumatologist was a disaster -- I left in tears after every appointment. My current rheumatologist is "very compassionate", like the one your GP has recommended you see for a second opinion. But, her focus is very narrow, as is the case for most specialists. She can't afford not to be, with too many patients for too few specialists in the field. She is helpful for managing symptoms of rheumatic diseases. But, I soon realized she is clueless about ME. As a result, I don't even raise this complication in my appointments. And when she provides advice that doesn't suit my broader condition (eg. that I have to start exercising), I merely smile and nod.

Unless you can obtain some assurance that the second rheumatologist has an accurate understanding of ME and has other ME patients who are being treated appropriately, this proposed appointment is likely to be worthless at best, dangerous at worst.
 
Messages
17
@Old Bones I did ask her why she insists on sending me to a rheumatologist. Her reply was not satisfactory. She said that she had polled all the doctors in her clinic and the consensus is to send a patient with ME/CFS to a Rheumatologist. I completely agree with your assessment of Rheumatologists (both based on my experience and things I've heard doctors say - back when I was able to work and did a lot of work in the medical field). But I haven't been able to give my GP anything to convince her otherwise.

@ScottTriGuy I certainly get your emotional reaction. She has been my GP for almost 4 years and has been better than most. There are many things I appreciate about her. However, maybe I need to just step back and realize she can't/won't do anything for chronic illness and look elsewhere. In the past 2 years she has watched my symptoms worsen and my health deteriorate, and to date she's done nothing to even help me manage symptoms. The problem is I have so little energy to spend on trying to find a doctor/treatment/etc. that I kept hoping she would take responsibility for this.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
However, maybe I need to just step back and realize she can't/won't do anything for chronic illness and look elsewhere. In the past 2 years she has watched my symptoms worsen and my health deteriorate, and to date she's done nothing to even help me manage symptoms.

I think maybe you answered your own question, guvaika. If the GP is watching you go downhill and doing nothing, you need someone else.

It is really hard work changing doctors, but maybe it's time to start look around again. Good luck.

p.s. not sure what county you're in, but there must be some good specialists on ME there. Can you maybe search online for the best ones, see what specialty they are in and ask for the same specialty from your GP? Maybe worth one more go.
 

CantThink

Senior Member
Messages
800
Location
England, UK
I am not sure where you are reading, but as far as I know and in my recent reading of up to date material, the mainstay of treatment for this condition is graded exercise therapy and antidepressants. There are a lot of other controversial treatments that are not widely accepted. So I cannot guarantee that he will have other options."

:bang-head::bang-head::bang-head:

I just can't...!!!

I love that your doc has the audacity to say: 'I am not sure where you are reading', and then says: 'in my recent reading of up to date material'

Perhaps something like this would work:

I am not sure what & where you have been reading doctor, but your answer indicates to me that you have not read the information I provided you with. Information which shows that CBT, GET and antidepressants are considered a wholly inppropriate and outdated treatment plan for CFS/ME.

I am potentially willing to see a rheumatologist if the aim is to exclude other causes of my symptoms; however, I would also like a referral to an M.E. specialist.

I am not sure where you are or your circumstances, but if you are in the US, then there should be options for consulting with an M.E. specialist (unless you are totally bed bound and can't ever leave the house).
 
Messages
17
@sarah darwins I'm in the U.S. I am considering looking at doctors in NYC. It would be a 7 hour train ride each way for me to go to the City. I'm in Upstate NY and on another thread members here have mentioned doctors in Albany or south of Ithaca, but both are over 2 hours of driving for me - which at this point I can't do.

@ScottTriGuy I'm glad you had good experiences with naturopath doctors. For me there are two barriers. (1.) I simply don't have the financial resources. I'm down to working 2-5 hours/week which doesn't even pay my bills. (2.) My best understanding of how I got to this point of illness is that wrongly prescribed meds caused iatrogenic damage. As a result my body is hypersensitive to so many things that it's like trying to walk across a minefield. I've had three experiences (so far) of recommended holistic treatments/supplements making things far worse for me.
 

Old Bones

Senior Member
Messages
808
She has been my GP for almost 4 years and has been better than most. There are many things I appreciate about her. However, maybe I need to just step back and realize she can't/won't do anything for chronic illness and look elsewhere. In the past 2 years she has watched my symptoms worsen and my health deteriorate, and to date she's done nothing to even help me manage symptoms. The problem is I have so little energy to spend on trying to find a doctor/treatment/etc. that I kept hoping she would take responsibility for this.

I think you are on the right track -- looking for help elsewhere for this aspect of your health care. But, since your GP "has been better than most", I'd recommended trying to maintain a good relationship with her. Because, having ME doesn't preclude us from getting other medical problems in the future -- the type your existing GP may handle very competently. I understand your frustration in getting no help to manage symptoms while your health deteriorates. However, many patients being treated by " ME experts" are similarly disappointed in their lack of improvement.

It's natural to wish for someone else to "take responsibility" for this illness. Many of us have been waiting years/decades for this to happen. Until it does, we need to do the work ourselves, and be our own advocate. I suspect if you polled the members of this forum, many would say that the best "treatments" they've tried were ones they discovered either themselves, or by considering advice from others travelling the same path. There is a wealth of information on PR.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
I had missed the bit about your GP mentioning "graded exercise therapy and antidepressants" as the latest thing (I assumed it was the same rheumo who suggested coffeee!). I don't know what your GP has been reading — plainly not the IOM Guide. If an American doctor won't even read what the IOM has to say in a comprehensive survey of the best available evidence, there's no hope for that doc. Move on.
 
Messages
17
To kind of respond to both @CantThink and @Old Bones... Thank you for the support and validating my own reactions to this GP. It makes sense to maintain a good relationship with this GP for general stuff.

I know you're right... That no one else is going to "take responsibility" for this. It is my body after all, and I've read enough here and elsewhere to realize that's the harsh reality of it.

It's just many days it feels as if all my reading and searching and trial and error is for nothing and my energy envelope is getting less and less and I get overwhelmed and wish for help.
 

CantThink

Senior Member
Messages
800
Location
England, UK
To kind of respond to both @CantThink and @Old Bones... Thank you for the support and validating my own reactions to this GP. It makes sense to maintain a good relationship with this GP for general stuff.

I know you're right... That no one else is going to "take responsibility" for this. It is my body after all, and I've read enough here and elsewhere to realize that's the harsh reality of it.

It's just many days it feels as if all my reading and searching and trial and error is for nothing and my energy envelope is getting less and less and I get overwhelmed and wish for help.

Oh no, I completely understand why you want definitive diagnosis!!! I would too and in fact have pursued it for other diseases I've gained on top of having M.E.. I've only had one so far where I have had to admit defeat, as the doctors were driving me crazy and I just gave up. :alien:

I think if you get a diagnosis, then you know you are on the right track... Otherwise you might always wonder if it was something missed that is more easily treatable.
 

Old Bones

Senior Member
Messages
808
It's just many days it feels as if all my reading and searching and trial and error is for nothing and my energy envelope is getting less and less and I get overwhelmed and wish for help.

@guvaika Sometimes the best, and kindest approach (towards oneself) is to get off the "treatment treadmill", if only for a few weeks, and give yourself an opportunity to rest. This might reduce your sense of being overwhelmed, at least temporarily. For me, every task and decision is always more difficult while in a state of exhaustion.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@sarah darwins I'm in the U.S. I am considering looking at doctors in NYC. It would be a 7 hour train ride each way for me to go to the City. I'm in Upstate NY and on another thread members here have mentioned doctors in Albany or south of Ithaca, but both are over 2 hours of driving for me - which at this point I can't do.

....I've had three experiences (so far) of recommended holistic treatments/supplements making things far worse for me.

New York is considered by some to be the US Capital of CFS. There are quite a few practitioners in the city, but even a few very close to you, if I recall. Consult @Hip 's ME/CFS Roadmap for more (docs are towards the end).

I, too, have tried some more alternative treatments. You have to take them on individually, and you cannot behave as though they are inherently safer than trying a new prescription -- they are not. That said, without OTC meds and dietary changes, I would be up the creek without a paddle. Sort through it all, and remember to start low, and go slow. And by low we mean "1/8 or 1/16 of the recommended dosage"!

Good luck. :)

-J
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I certainly get your emotional reaction. She has been my GP for almost 4 years and has been better than most. There are many things I appreciate about her. However, maybe I need to just step back and realize she can't/won't do anything for chronic illness and look elsewhere. In the past 2 years she has watched my symptoms worsen and my health deteriorate, and to date she's done nothing to even help me manage symptoms. The problem is I have so little energy to spend on trying to find a doctor/treatment/etc. that I kept hoping she would take responsibility for this.

As difficult as it is to hear doctors who are openly vocal about their belief in ME/CFS as a psychological condition or one that requires psychological treatments, at least you know where you stand with them and if they won't be educated you walk away. They cannot help you.

It is far worse to be with a doctor who is compassionate to your face but holds those same beliefs without telling you. You keep hoping they will help you because you don't realise what their outlook is. Sometimes you get to the point with them that you are at now. You push to educate and to get treatment and then they reveal what they really believe. Sadly I think you're probably wasting your time with her.
 
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GreyOwl

Dx: strong belief system, avoidance, hypervigilant
Messages
266
OP, if you were injured by meds it might be helpful to see a clinical pharmacologist? They might be able to help with identifying common metabolic pathways in your triggers.
 

Gingergrrl

Senior Member
Messages
16,171
Oh no, I completely understand why you want definitive diagnosis!!! I would too and in fact have pursued it for other diseases I've gained on top of having M.E.. I've only had one so far where I have had to admit defeat, as the doctors were driving me crazy and I just gave up. :alien:

I think if you get a diagnosis, then you know you are on the right track... Otherwise you might always wonder if it was something missed that is more easily treatable.

@CantThink This is exactly the point that I am at b/c even from specialists, they are not certain if I have ME/CFS vs. another illness. If I could know for sure what I have, it would help me to know where to focus my energy and I completely understand where the OP is coming from.

Once I got an absolutely iron-clad diagnosis of MCAS, it has made a difference and I am hoping to some day do the same for my severe dysautonomia and breathing issues. I do still wonder if there is something treatable that has been missed b/c I have chosen the wrong doctors so many times (and have not had PCP/GP since early 2013.) My PCP at that time said, "I do not treat CFS and cannot help you" (even though I was still working full-time back then and no where near as ill as now.) She missed that I even had Hashimoto's Disease and most PCP's here suck IMO. Sorry if I sound bitter.

If a doctor told me that I needed GET or anti-depressants (regardless of whatever label my illness ultimately gets), that would be the end of me seeing that doctor b/c I would know where they stand. I tend to focus my energy on finding a doctor who can actually help me vs. trying to pursuade one who I know cannot. This takes endless work as well, but it works better for me.
 
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Mel9

Senior Member
Messages
995
Location
NSW Australia
I think maybe you answered your own question, guvaika. If the GP is watching you go downhill and doing nothing, you need someone else.

It is really hard work changing doctors, but maybe it's time to start look around again. Good luck.

p.s. not sure what county you're in, but there must be some good specialists on ME there. Can you maybe search online for the best ones, see what specialty they are in and ask for the same specialty from your GP? Maybe worth one more go.


When I moved from one GP to another, the first one charged me $50 to transfer my medical records
 

CantThink

Senior Member
Messages
800
Location
England, UK
I do still wonder if there is something treatable that has been missed b/c I have chosen the wrong doctors so many times

@Gingergrrl I am the same.

I believe in my case - due to specific onset - that I have M.E. underlying (as my long term PITA), but there are things/symptoms that have been happening to me in the past 10 years that make me wonder: what are the missing puzzle pieces?

I see other PWME who have similar or the same going on, and it makes me wonder if it's some form of subset (and thus the same progression/new symptoms or additional conditions). Yet at the same time, I have seen many people without the M.E. diagnosis who have all the other things I seem to be developing. It's so confusing.

She missed that I even had Hashimoto's Disease and most PCP's here suck IMO

This happened to me too. I had to sort my thyroid out myself privately despite seeing my GP, another GP, and being referred to 2 endocrinology clinics (seeing 3 doctors - 2 of whom were juniors - who were all useless!).

Sorry if I sound bitter.

You dont sound bitter, you sound frustrated and peed off ... Rightly so! We're are scrabbling around in the dark! :(

I am bitter (& twisted) hahahaha :lol::p