Diagnosis but feeling like a fraud

[Jemima]

There's a user-generated directory of doctors here in the forum too - it actually has a lot of listings for Birmingham, Alabama. No idea how up to date the listings might be!

 

[sunkacola]

Jemima, sorry. I edited out the link you posted before I realized that it was an internal rather than external link.

 

[Jemima]

Jemima, sorry. I edited out the link you posted before I realized that it was an internal rather than external link.

No worries at all! Thanks for being so on it

For anyone hoping to look at the doctors directory, just delete everything after ".org" in your browser's address bar. From there it's easy to access all the resources on this site that are outside of the forum - of which there are quite as few!

 

[JayCS]

I believe that finding the right doctor is key

After 46 that all helped a tiny bit, some a little more, but a lot harmed, I'd say this is true if you're only looking for meds.
As meds didn't help me, "the keys" for me are a) the right physio, b) the forums, c) symptom tracking, trigger hunting, being pro-active, researching, alleviating & preventing pains with exercises & supps.

I am getting conflicting information between a Spine DR, Rheumatologist, Neurologist, and Endocrinologist. Two say its Long Covid, two say its Fibro. The Neuro and Rheumatologist apparently do not treat Fibro (the two who think its Fibro) and released me from care with NO information...so here I am, educating myself.

Agreeing with the above, I'd add that in my experience it'd be typical for spine & hormone docs not to acknowledge fibro much. Maybe the way they allow themselves to think (measurable, visible). They are the wrong docs to ask about or listen to re. FM, but good to make sure it's nothing else.
Same experience to yours with my rheum. & neuro docs too. Asking to be put in a rheum/fibro clinic with 4 rheums there, mainly went to show that I was already on a better way, so the 2 weeks did set me back (most physio there hurt me, snorers, mattress & food too, & missing out on acupressurist), but interesting experience & good to know.

 

[Auriel]

Aw you included the forum jaycs that’s so sweet (it nearly made me teary)

 

[HALF FULL]

I read your post with tears running down my face - I have been dealing with this, I feel the magic number was 40 - and will be 56 this year. I have pushed myself through for the most part - isolated and alone - and have heard from at least 20 doctors that it is me - nothing is wrong - I thought cancer, only because both parents died from cancer. I was fine with cancer, I could with early detection, get better. Crazy? Lyme disease? Crazy? Lupus? Crazy? RA? Crazy? and was finally told today, fibromyalgia. I was a nurse for 15 years, until my body could only get through a 12 hour shift with pain medication and lots of foooze - caffeinated mints. I honestly never judged anyone I ever cared for, everyone has a story, who am I to judge? But today, when the doctor said fibromyalgia, I burst into tears and said, "so its all in my head?" Shame on me!!!! Shame on much of the medical community!! Not all, but many. Especially now with COVID everyone is so taxed. My primary stopped returning my calls. I am one of 12 - at 8, I woke up in an ambulance and asked to be let out, as my parents didn't do doctors, unless death was on our door step. So I don't call a doctor just to say hello.

I look forward to reading, reading and reading to find a better way. Thanks to each of you for your courage - for the first time in 2 years, I wont ask for death to take me in my sleep. HALF FULL

 

[sunkacola]

@HALF FULL , I am very glad you found this forum and hope that it proves to be helpful to you. since you read my advice post, you know that there are many things you can try that may ease your pain and will almost certainly overall make you feel better. fibromyalgia is not all in your head, of course. It's a real thing. What I think, not that I am any kind of medical professional, is that it is actually an umbrella diagnosis and yeas from now it will be better understood and probably broken down into different syndromes. For now, getting a diagnosis is not a bad thing because you now know how to find help for what is going on with you, and you have found a caring bunch here on this forum who understand and will never laugh at you or think you are exaggerating or lying.

It is not right that your doctor is refusing to return your calls, but many doctors are over taxed as you say. And truthfully, there is nothing a doctor can do for you with fibromyalgia except prescribe pain medication. Medication may be needed at times or at first, but is not a long term solution for fibro. In fact, the less you can manage to take, the better. Feeling all alone is common at first, especially if people do not believe you. But you have found a place here where people will support and encourage you, and read and respond if you just need to rant one day.

If you have any questions about my advice post or anything else at all, feel free to ask and someone here will be able to reply and help.

 

[emmett518]

I've been suffering from night sweats, and the perspiration has a strange odor to it.

 

[sunkacola]

I've been suffering from night sweats, and the perspiration has a strange odor to it.

There's no question in your post, so I assume you just wanted to tell someone.

I think we have established that you don't have fibromyalgia by the content of your other post. You are welcome to post here if you want to, but since your issues are not fibro we may not be as much help to you as some other forum or your doctor.

 

[fimi]

I've been suffering from night sweats

Yes, I get the sweats day and night @emmett518. Temperature control is another problem for me. The cardie is on and off all day long

I do hope you'll keep chatting emmett518, as it will help your anxiety and overall health, as well as others too. Plus it would be good to know if the improvement in your health (from your other post) keeps up. I do Hope so.

 

[JayCS]

The cardie is on and off all day long

Had to look that one up!
I need hoodies - for my head incl. forehead too, they also help reduce light and sound when I'm sensitive, tired...
And I have lots of hoodies in 3 thicknesses (is that a word?) which I combine as needed, inside or outside, winter or summer....
That doesn't work at night, so I'm thankful for snappy cold showers when I overheat, which resets all of my system, not just temperature.

 

[fimi]

Had to look that one up!

hehe...you learn something everyday JayCS
And I love my hoodies too, in all thicknesses

 

[Auriel]

See your dr emmet get some blood tests or see what they say

 

[Auriel]

I like hoodies too, I got two
one baby pink one and one grey, I wanna get another one maybe black or navy?

 

[Auriel]

I think you’ve made up a new word @JayCS