Need New Doctor NC

JayCS

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Hi there and welcome! Usually we can't. Closest we get is the fibromyalgia doctor lists on our main page. Guessing you are in the US, and NC might then be North Carolina, this is our page that might help: Fibromyalgia Doctors in North Carolina.

But interesting what you call it, new to me. I'd be interested who it is that calls it that.
ME and CFS as very related names we/I know, but even trying to find CFIDS on pubmed only brings me to a Japanese study from 1992, so I'm guessing this is a very idiosyncratic alternative term (listed on wikipedia under CFS) which is trying to stress an opinion that its cause may an immune dysfunction or that the specific form concerned has a distinct immune system component.
Interesting since I have MCAS on top of fibro, and if it were more mixed and I needed a combined name, maybe I could call it Fibromyalgia Immune Dysfunction... 🧐 However I can distinguish the symptoms pretty well, except the fatigue..... makes you think 🧐
 

mozaicbeading

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I origianally was diagnosed by Dr Charles Lapp, expert of the Hunter Hopkins Center in Charlotte NC. He called it that because CFS was too vague. I've used the term since 2009 when I was first diagnosed. Acquired it in 2003. Thank you for the info. I appreciate any recommendations or direction I can receive. Btw, Hunter Hopkins Ctr doesn't take insurance, that's the reason I'm not going there.
 

JayCS

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He called it that because CFS was too vague.
Ah, that's what I thought.
And what do you think, does the immune focus fit and help you?
Difficult this trying to label something that isn't yet understood.
An alternate name for fibromyalgia is "fibromyalgia syndrome". Syndrome makes it sound as if it isn't a real illness, 'just something vague'. While fibromyalgia alone means muscle fibre pain, which is only a small part of what we suffer. I prefer the latter name, but...
Also reminds me of the rheum that diagnosed my fibromyalgia using that argument to put forth the beautiful word "polyinsertionstendomyopathy". Meaning the tendons around my joints hurt. Which is true. So first I thought: great, she knows what she's doing. And it did me the service of helping me find that what I thought was joint pain isn't, it's tendon pain. ("we" if we haven't also got a joint condition.) Meaning if I treat the tendons with acupressure, massage gun etc. that pain gets better. So very helpful. But what about my other local pains, my Ache, my fatigue, my insomnia, my fog, my IBS. A more precise name for a vague condition is misleading as it ignores the rest.
 

mozaicbeading

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Agree with you totally! When a test can't confirm a problem, they dismiss it. Only those who have it truly understand. But I've found a few doctors along the way who believe us. It's just now they've all retired, and I can't find a new one who has a clue, is willing to treat, without prescribing so much medication, and who is willing to complete my disability insurance forms, even though I make it so easy on them.
 

Cbreeef66

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Very interesting! My rheu said similar thing but not suggestions about what to do! Have you found a good NC dr?

Ah, that's what I thought.
And what do you think, does the immune focus fit and help you?
Difficult this trying to label something that isn't yet understood.
An alternate name for fibromyalgia is "fibromyalgia syndrome". Syndrome makes it sound as if it isn't a real illness, 'just something vague'. While fibromyalgia alone means muscle fibre pain, which is only a small part of what we suffer. I prefer the latter name, but...
Also reminds me of the rheum that diagnosed my fibromyalgia using that argument to put forth the beautiful word "polyinsertionstendomyopathy". Meaning the tendons around my joints hurt. Which is true. So first I thought: great, she knows what she's doing. And it did me the service of helping me find that what I thought was joint pain isn't, it's tendon pain. ("we" if we haven't also got a joint condition.) Meaning if I treat the tendons with acupressure, massage gun etc. that pain gets better. So very helpful. But what about my other local pains, my Ache, my fatigue, my insomnia, my fog, my IBS. A more precise name for a vague condition is misleading as it ignores the rest.
 

JayCS

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In case someone's confused, like I was first, @Cbreef66 was the one who wrote

"Very interesting! My rheu said similar thing but not suggestions about what to do! Have you found a good NC dr?"
I'm not sure however if "similar thing" refers to
CFS/CFIDS/ME - Chronic Fatigue Immune Dysfunction
or (since my quote is in there) to
polyinsertionstendomyopathy

whilst "good NC dr" will refer to mozaicbeading's thread title/post...

"not suggestions about what to do":
My 1st rheum excluded anything rheumatological, but denied FM, my 2nd diagnosed FM, but only gave metamizole (banned in the US) and said: "keep on exercising", "don't worry about it". I only went to get a clinic referral after, got everything else excluded and ended up doing it all on my own.
Since FM/CFS aren't rheumatological, but mimic those conditions, we are sent to rheums for exclusion and some gain a lot of expertise on it (see Andrew Gross' brilliant youtube video on FM), others have enough other things to do rather than treat something that isn't particularly well treatable by docs...
If at all we'd need a network of specialists according to our type of condition and co-morbidities, as well as a GP/PCP who can holistically point us to all the many mental, physical, dietary, environmental, (med) & supp treatments available and people who support us trialling them und find and expand our collection of things that help a bit (in my case 100+/d all things considered). The best docs are ones that point us to this forum :cool:.
 
Last edited:

mozaicbeading

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In case someone's confused, like I was first, @Cbreef66 was the one who wrote

"Very interesting! My rheu said similar thing but not suggestions about what to do! Have you found a good NC dr?"
I'm not sure however if "similar thing" refers to

or (since my quote is in there) to


whilst "good NC dr" will refer to mozaicbeading's thread title/post...

"not suggestions about what to do":
My 1st rheum excluded anything rheumatological, but denied FM, my 2nd diagnosed FM, but only gave metamizole (banned in the US) and said: "keep on exercising", "don't worry about it". I only went to get a clinic referral after, got everything else excluded and ended up doing it all on my own.
Since FM/CFS aren't rheumatological, but mimic those conditions, we are sent to rheums for exclusion and some gain a lot of expertise on it (see Andrew Gross' brilliant youtube video on FM), others have enough other things to do rather than treat something that isn't particularly well treatable by docs...
If at all we'd need a network of specialists according to our type of condition and co-morbidities, as well as a GP/PCP who can holistically point us to all the many mental, physical, dietary, environmental, (med) & supp treatments available and people who support us trialling them und find and expand our collection of things that help a bit (in my case 100+/d all things considered). The best docs are ones that point us to this forum :cool:.
 

mozaicbeading

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Just an update for those interested: I have found one doctor in Charlotte NC, who originally diagnosed me in 2009 and then pointed me to Dr Lapp of Hunter-Hopkins Center (who doesn't take insurance, and requires a first time visit of 4 hours at $498.00 per hour). Dr Jimmie Adcock of First Charlotte Physicians in the EpiCenter (in downtown Charlotte) is my new doctor that I hope will be an answer to prayers. Dr Adcock understands the disease, prescribes medications as needed, and has offered to complete my disability insurance paperwork on a yearly or twice yearly basis. Other doctors don't seem to want to make the time to do this, even though I make it sooo very easy on them. I go back to see him in a couple months, so prayers needed for him to continue to be cooperative in this situation. It's so difficult to find a helpful, knowledgeable caring, and cooperative doctor. I miss Dr Jorge Flechas of Hendersonville, NC, who retired at the end of 2019.

I am still looking for an additional doctor (as a backup) who knows or is willing to learn about ME/CFS. I've met with one in Mooresville NC who should know about the disease (his previous partner was very familiar), but who wants me to take a WOWI Test for some reason. It's a snapshot in time kind of test for career selection. That won't show him my post-exertional malaise, post brain fog, and other post activity problems, so for now I've just consented to bloodwork only. He seems to want to push a vitamin drip/injection routine. I'll have to learn more about that before I go through the funds to pay for that. As I understand it, Medicare will not pay for it. I'm on disability income with Medicare, and can't afford extravagant procedures.
 

sunkacola

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@mozaicbeading , I support your not wanting to go through all kinds of procedures when there is, in fact, no empirical evidence that things like vitamin drips or injections will do you any good.

Fibro is not a syndrome caused by vitamin deficiency. Now, if you have been properly tested and found to be definitely deficient in a vitamin, then sure, taking some of that will help your overall health and that is good, although it is highly unlikely that you need injections when you can simply change your diet and maybe take a vitamin pill and cover that deficiency.

The thing that will help you the most is simply being as healthy physically and mentally as you can be, and there's nothing that a doctor can do to make that happen as it is up to you. If someone says otherwise, feel free not to listen to them, especially if they want to charge you money for something.
 
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