Diagnosis but feeling like a fraud

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Angharad_Efua

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Sep 17, 2021
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DX FIBRO
Diagnosis
09/2021
Hello lovely people!

I was diagnosed this week with Fibro and osteoarthritis, I'm 32 years old and struggled with different problems over the years, including depression/anxiety, IBS, bladder pain, headaches, sensory overload and different aches and pains over my body - mostly stiff joints, especially in my hands.

Since the diagnosis I've been doing a lot of research and there seems to be so much contradictory information out there. One website said that excess sweating was a symptoms of fibro and another said that people with fibro struggle with the heat because they can't sweat. FYI I definitely suffer with the first problem!

I'm feeling very confused and also from I've seen a lot of people speaking out whose fibro affects their lives to the point they are in a wheelchair or can not work. I'm feeling slightly like a fraud and that maybe I don't deserve this diagnosis because I am able to work and I'm now second guessing how authentic my pain is compared to other people who are living with fibro.

Has anyone else felt like this since getting a diagnosis?

Thanks everyone, is so great to know there are these platforms out there for discussion.

Best wishes,

Angharad
 
Hi there, and welcome to the forum.

First, you are not in any way a fraud.
Fibromyalgia is a syndrome that has many, many symptoms. Some are polar opposites of each other, like tolerance to heat or cold, and some people with fibro have one, some have the other, and some have both and they come at different times.

If you are on any website that claims that ALL fibro people have X symptom, or that says NO fibro people ever have Y symptom, just close the page and move on because they do not know what they are talking about.

If you list your symptoms here many people here will be able to identify with some or all of them and others will say they've had the opposite problem. that's fibromyalgia for you.

I also want to suggest that you not try to compare your pain to someone else's.....If it is going to make you feel lack of confidence or like a fraud then just don't compare. The fact is, we all have the pain we have. some people have higher pain thresholds than others do. There is no way to compare one person's pain to another's anyway. What might be a 9 on the scale of 1 to 10 for one person, might only be a 6 or a 4 to another person. but that doesn't mean that the one who feels it is a 9 is not in a lot of pain.

We each have to honor and validate our own experience.
Your true and honest experience is always authentic.
 
Hello and welcome! I also suffer from the sweating monster! It comes on at the least bit of physical activity whether it’s the dead of winter or middle of summer! It’s like once I start sweating, I cannot stop! My hair looks like I just stepped out of the shower. It is so socially embarrassing. My orthopedist “suggested“ that I may have fibro, but I’ve never been officially diagnosed. My other symptoms are neuropathy in my feet, extreme fatigue that comes and goes, muscle weakness, but like you I don’t have the extreme all over pain that others describe. I agree with Sunkacola that everyone’s pain tolerance is different. All I can suggest is educate yourself on fibro as much as possible. I believe that finding the right doctor is key (which I have yet to accomplish), and ask questions on this forum! It has really helped me immensely!
 
Fibro is such a strange disease and nobody has exactly the same symptoms at the same time. I have pain that moves from one part of my body to another from moment to moment. I used to love the heat, but now I sweat and feel like I'm dying if it's over 75. I have more pain, however, if it's under 60. And I'm frequently tired, but sometimes I have insomnia.
We all have different symptoms, but the one thing we all share on here is support. Welcome!
 
Fibromyalgia is a complex syndrome with constellations of symptoms that vary from person to person and within each individual. Symptoms vary even week to week and often seasonally if you live in the 4 seasons part of the country like I do in Wisconsin where November to March is often worse. A few of my patients struggle more in the hot summers. Those that do struggle more in summer generally have a higher BMI than those who struggle in winter.
Unfortunately fibromyalgia is one of the 2 most stigmatized and misunderstood conditions I care for. Stigma risk is both outward and inward. Outward with subtle, if not overt sentiment from physicians who don’t have a good grasp of the condition due to lack of training. This leads to lack of any substantial help for those struggling. Most doctors would put their fibromyalgia patients at the top of their list of least favorite patients to see on their schedule unfortunately.
There also is a marked underdiagnosis of it as well. Those who are diagnosed typically are one the moderate to high and extreme levels when measured by the fiqr. Those at highest level find it very hard to get through day to day activities let alone work.
There are many in the mild to moderate level that plug along annoyed and frustrated by lack of diagnosis for their symptoms when they did go to their doctors. Perhaps they were diagnosed with depression or anxiety which from my experience is less often the issue. This issue is more often frustration with fibromyalgia syndrome symptoms of pain, fatigue, brain fog, unrefreshing sleep among others.
I hope this helps even though it is hard to encapsulate it all in a few short paragraphs
I will end with this, fibromyalgia patients are in the top of my list of my favorite patients to see.
I love when they are the last patient of the day so I can go over the allotted patient time to get a good history, careful exam, and start the process of education and treatment plans.
It is not uncommon for me to spend nearly 2 hours with a patient who has fibromyalgia if they are at the end of the day.
If you wanted to see me try to get the last appointment of the day or before lunch where I commonly see patients through lunch and eat when I can in the afternoon.
When seeing a doctor for fibromyalgia related issues be bold and ask these 3 questions at your first visit with him or her or when the initial diagnosis is made.
How comfortable are you in making the diagnosis of fibromyalgia from 0-10?
How confident are you that you can help people who have fibromyalgia from 0-10?
How many patients have you diagnosed with fibromyalgia yourself or do you have other doctors make the diagnosis?
 
Recently diagnosed as well and I am feeling much like you. I work 2 jobs, not in excruciating pain but noticeable pain that comes and goes. 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.
 
When seeing a doctor for fibromyalgia related issues be bold and ask these 3 questions at your first visit with him or her or when the initial diagnosis is made.
How comfortable are you in making the diagnosis of fibromyalgia from 0-10?
How confident are you that you can help people who have fibromyalgia from 0-10?
How many patients have you diagnosed with fibromyalgia yourself or do you have other doctors make the diagnosis?
This is a good idea, to some degree. There's no need to waste your time with a doctor who doesn't believe that fibro exists or has never treated a person with fibro. I always recommend calling around and asking the person who answers the phone (you probably won't get to speak to the doctor) if the doctor treats people with fibro.

I wouldn't recommend that anyone ask a 1-10 kind of question, though. That is likely to be seen as challenging (or possibly as a game) to the doctor (or whoever answers the phone) and no one, especially a doctor, likes that kind of thing. As an example, I help people to train dogs and if someone started asking me 1-10 questions about my skills with dogs I would not find that comfortable, although I am happy to discuss my experience with anyone. Plus, no one is going to want to say 1 or 2 even if that would be honest.

Far more polite and friendly just to ask if the doctor has fibromyalgia patients, and if they are comfortable with diagnosing and treating people with fibro.
 
Recently diagnosed as well and I am feeling much like you. I work 2 jobs, not in excruciating pain but noticeable pain that comes and goes. 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.
Yes, SH3, unfortunately many of us have found ourselves in that position. As I have often said, it ends up being up to the person suffering to do all the research that needs to be done and to become their own laboratory and experimenter. Even with good advice from a knowledgeable doctor (should you be so fortunate), you will still have to find out what works for YOU. This can be a lot to ask of someone who is suffering daily, believe me I know. But sometimes that is what you have to do and if in the process you find information that helps you it is worth the energy spent. This forum is, I truly hope, a source of good information for people who are struggling with the syndrome, the diagnosis, and the doctors.
 
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@Drtohelpfibro before having my fibro diagnosis confirmed tests I had which were some blood, rheumatology pressure points and reflex ones Ive felt I should have had more like I was never tested for ms nor had any mri’s or neurology referrals, Should people exhibiting both fibro + cfs ( in you medical opinion) have all the tests above done before the conditions decided/confirmed?
 
Hello angharad, welcome to the forum 🍷 you have fibro ? If you have fibro you have fibro ? That’s the way it is, some of us have both cfs and fibro and some have one or the other and varying degrees to which we can can do certain things, like I was nursing once but I’d have no way of doing that now it would be detrimental to me and patients so now I’m looking to get back into volunteering using the skills and qualifications from other courses I’ve done that’ll hopefully will get me into employment again I’ve just had to learn what I can and can’t do but your not a fraud we’re just all doing/managing how we can?also do you have welsh connections? just wondered cos of your name 😊
 
Hello Angharad, I have to agree with everyone that has responded fibromyalgia is such a crazy condition you definitely have to go by your own experience you cant compare with other people the symptoms are so vast that people may have a lot of the same symptoms but one unique symptom nobody else has experienced, your definitely not a fraud I'm glad you are not having severe symptoms and hope it stays that way for you . Just go with what your body is trying to tell you and you cant go wrong, good luck with everything and welcome.(y)
 
If you needed ACL surgery done by an orthopedic surgeon, for example, it would be highly appropriate and expected to ask how many surgeries he or she has done.
It could also start an honest conversation with the doctor. By asking, it is giving them permission to say they have little comfort or experience working with fibromyalgia and not have to pretend they know it all. You can ask who they would recommend. This is not a game, just a way to gauge their level of mastery . And this would not likely be done calling the front staff who schedules, but face to face with the doctor. The triage nurse and staff might know their level of experience but for most, fibromyalgia is an obscure disease that most don’t have a strong mastery of.
 
If you needed ACL surgery done by an orthopedic surgeon, for example, it would be highly appropriate and expected to ask how many surgeries he or she has done.
It could also start an honest conversation with the doctor. By asking, it is giving them permission to say they have little comfort or experience working with fibromyalgia and not have to pretend they know it all. You can ask who they would recommend. This is not a game, just a way to gauge their level of mastery . And this would not likely be done calling the front staff who schedules, but face to face with the doctor. The triage nurse and staff might know their level of experience but for most, fibromyalgia is an obscure disease that most don’t have a strong mastery of.
I did not say it was a game.
What I said is that it might be perceived as one if you start asking people 1 to 10 questions, and I also said there are more polite and successful ways to ask.

And in my experience there is no possibility of having a face to face conversation with a doctor unless you have an appointment with that doctor. The doctor won't just come out to talk to you between patients and answer your questions. And once you have made an appointment and are in there, you may be subject to the doctor's disbelief or dismissal, which is precisely what people here are trying to avoid.

The point is to do your best to find out before you make an appointment that you may have to pay for, or use part of your insurance to cover, whether or not this is an appropriate doctor for you. As I said, you can't talk to the doctor ahead of time to get those questions answered. The staff may be able to answer those questions, though, because they will know if there are fibromyalgia patients on the doctor's patient list.
 
Where are you located? Or do you know exceptional great docs like yourself around the Birmingham, Alabama area?
If you are directing this question to "Drtohelpofibro", that person is no longer posting on this forum.

You need to do your own research to find a good doctor.
If I were doing that, I would do the following:

Google my town and "fibromyalgia doctor".
I would read all the reviews of the doctors who came up on that search.
If there was one that had really good reviews by people who have fibromyalgia, I'd go there.
Lacking that, I would go to one that had very good reviews saying the doctor listens to patients, is patient with people, and so on. But before I made the appointment I would call that office and ask the person who answers the phone if the doctor has patients with fibromyalgia and other chronic pain issues.

You can also just take the recommendations of a friend.

You need someone who is very knowledgeable, and will test you for all of the things that might be causing your symptoms, and not someone who with either dismiss you or just pop off and say without tests that you have fibro.
 
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