I’m terrified! After horrible meeting with Doctor.

Mel17

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Hi so I’m so stressed as I spoke with my doctor after being fobbed off on a number of occasions. I demanded with the support of a friend to be referred to a top neurologist. I was rejected so said to the doctor that I wanted to see what he had written . Although it was written professionally he had not written it in my favour and I believe it was coded. I strongly believe this . Anyway I have recently switched practices and now I am waiting to make an appointment but I am worried that on top of everything I will have to convince doctors that I have the symptoms and deal with a range of scepticism. Additionally , I have completed the test on here and there is a high probability that I have fibromyalgia. I have nearly all the symptoms but what do I say when I meet the new doctor? Hello I think I have fibromyalgia or do you keep quiet and give them a list of symptoms in the hope that they will join the dots . I’m in constant pain and their questions when I see them are difficult given the brain fog and memory issues that I have . I’m so depressed lack confidence in my ability to communicate with sceptical doctors yet I’m sitting here with depression, urinary incontinence, back ache, stiffness in my joints , constipation etc and brain scans which come back positive and pain being put down to wear and tear . All I want is someone to see my symptoms as a whole rather than individual things happening to my Body . I’m so down right now but aim to see the new doctor next week . On a B positive note I have been given a date for 6 weeks of physio to deal with pain . But again have no diagnosis for what is happening to me !!! Thank you for reading this ❤️
 

cookiebaker

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Hi @Mel17 and welcome.
Sorry you are feeling so down and frustrated with all of what is going on. It is not surprising really that you dont have a definite diagnoses yet, as that can often take a while.
Most have found it better to go in to an appointment with a new doc with the top 3-4 major symptoms (not all of them as that is just too overwhelming) Based on what you have stated above, i would suggest the following..

Wide spread pain and stiffness
Urinary incontinence​
Constipation
*a maybe* Depression due to the above.​

Or whatever your top concerns are - the things that bother you the most.

Having someone go with you to your appointment could also be helpful - a partner, family member or close friend - someone you trust and knows what you are going through that can act as an advocate for you.

and brain scans which come back positive
Not really sure what you mean by this, however... positive for what? or do you mean they are clear of any problems?

It is good that you have physio appts set up, use those to their fullest advantage.

Another resource for helpful suggestions on managing fibro can be found here - lots of things to try and see if they can help you.
Sadly there are no "quick fix" things, but dietary changes can have a big impact on how we feel - we just need to give them enough time to prove them.

Know that you are not alone and there are plenty here that can certainly empathize with what you are going through.
Hope your new doctor is more compassionate and helpful in sorting things out.
 

Mel17

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@cookiebaker thank you so much for your reply! I meant to say scans with no concerns found although I’m never given any information or feedback on results. I just have to be content with nothing to worry about. Thanks for the advice that’s really helpful and reassuring. 😘
 

sunkacola

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hello Mel, and welcome to the forum.

It is inadvisable to mention depression or anxiety or any mental issue to the doctor, as it often serves as fuel for them to classify you as being hypochondriac. I suggest you only list physical symptoms. Go in calmly, and no matter what do not get emotional in your telling of your symptoms or in response to what the doctor says, no matter how hard that is. Doctors won't respond well to emotion and you will make it, again, less likely that they will take you seriously.

What do you mean about the brain scans coming back positive? Was this an MRI? what did the doctors say?

Now, when someone says the pain is due to "wear and tear" or to age or something like that, it is a cop out because while age and usage does bring "wear and tear" on the body, that is not a diagnosis, nor is it at all helpful. It's like saying someone is "sick" without bothering to find out if it is the flu or pneumonia or covid or cancer. You need to know, if they say that, what the "wear and tear" has caused. Ie: is it a lack of alignment in the back, or compression in the spine or lack of cartilage, or arthritis, or ligament tear, or what. This is what you need to focus on if someone gives you a bs answer like that.

I just saw your last post, which came in as I was writing this.
You need to be given specifics. If you are in the US you have the legal right to demand to see your test results from any test they run, including copies of blood work, x-rays and so on. Don't know about other countries, but I would suggest you look thoroughly into that if you are not in the USA and find out what your rights are. You do not have to be content with not getting information.
 

Mel17

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@sunkacola thank you for your reply. Amazing advice and I see now that my mental health has taken precedent over other issues and that is what I picked up perhaps in the Doctors referral letter in which he could have referred me if he had wanted to . Anyway I have now left him but hoping not to start off on the wrong footing with the new doctor . Since the old one put all my symptoms down to depression. Thanks for the support as I felt deflated after receiving the news that the referral had not been approved.
 

sunkacola

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Your feeling deflated is completely understandable and believe me, most of us have been there and have an idea how you feel.

Talk about your mental states with a psychologist or a therapist if you can get one, because those are very important as well.

Get all your records and results ahead of time so you know what they say.

Again, I don't know where you are but most places have a computerized record that doctors can access and so your new one may read the previous doctor's notes. If so, it is even more important for you to go in there being very calm, logical, and reasonable. If the new doctor asks about your mental state, reply with something along the lines of feeling so much pain wears you out. Being worn out all the time and in pain is causing you to feel less joy in life, as it would for anyone in this situation, but that you are doing your best to keep your head up and stay focused on trying to get answers to the physical symptoms. Say very little about your mental state and always calmly turn it back to your physical symptoms.

I have dealt extensively with depression and with fibromyalgia, and this is the approach that works. Doctors other than those who specifically work in the mental health field are not qualified to, or interested in, being helpful with mental health problems anyway.
 

Mel17

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Aww @sunkacola thank you 😊 what your saying makes so much sense. I live in the UK and I feel like I need to gear myself up to not be taken seriously. But feeling a little stronger and better prepared after this conversation 😘
 

NY Farmwife

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Mel. Your story is just what most of us here have experienced. That M.D. (which many of them think stands for Major Deity.) probably put into your permanent record that you are a hypochondriac. YOUR PAIN IS REAL. You are not a hypochondriac. You are not faking pain so you can get attention. Please fire that doctor. Fire as many as you need to. Some day you will find a physician you will work with.

Two weeks ago, I visited my fairly new nurse practitioner. On the previous visit she had prescribed a step-down course of cortisone for pain where my tailbone and hipbones meet. She started out by asking if there had been any improvement. There had. (Goody, goody!) She told me she was so glad things were better, then expressed how sorry she was that I had had to endure so much pain for so long. I teared up and told her that the worse part was when doctors acted as if I was imagining the pain. (You know, the pain that was taking over my life.) I think she was ready to cry when she heard that.

There ARE caring professionals out there. Keep trying. You'll find one.

(Are there Physicians Assistants and/or Nurse Practitioners in the U.K.? Here in the U.S.A., they can do almost everything a physician can. You usually see a supervising physician on an early visit, along with your NP or PA. Most of the NPs and PAs were RNs then went for 2 or 3 more years of training. Some are specialists. After joint replacements, we see a PA for follow up care. My husband's last cardiology visit was with a NP. These professionals fill a void where there are just not enough doctors. Many times a physician is expected to see a new patient every 7 minutes. NPs and PAs routinely spend 20 or more minutes with you. It's a good deal.)
 

Mel17

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Thanks @NY Farmwife well when I went to physiotherapy for an initial consultation the person there ( no idea if she was a doctor or not ) explained to me that the brain scan thingys lol cannot detect pain. But prior to that she tested nerves in my legs they were fine and did all of these small routine tests. She mentioned mental health ie depression towards the end and I thought oh I think I will be dismissed. But thankfully she has arranged for weekly sessions which I am grateful for . It feels like this is going to be an exercise in how well I can communicate or finding as you say a sensitive medical practitioner! Today while walking I took a tumble and the brain does not seem to be as clear as it once was . Which does not help with the lines of questions . Nice but sad also to hear that I’m not alone. Sad to hear that other people have had to fight for diagnosis and beyond !! Thanks again to everyone who has responded you are very generous ❤
 

sunkacola

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Learning how to communicate is one of the most important things. It's easy to say we shouldn't have to....and I wouldn't blame ayone for feeling that, as I have as well. But I also know that doctors deal all the time with malingerers, and indeed some of them have that Major Deity complex, which they are often taught to have while in medical school. Finding one who truly listens is sometimes a long road but if you do it makes all the difference. We are all here to support you.

And remember.....fibromyalgia (which we don't know for sure you have but it sounds like it) is a condition that is defined by the fact that there are all these symptoms without any direct cause being found by medical doctors. So you are in the company of many who know where you are.
 

cookiebaker

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There ARE caring professionals out there. Keep trying. You'll find one.
without a doubt, there are a few out there that actually care. I have found that DO's, Nurse Practitioners (NP) and Physician Assistants (PA) can be far more compassionate than the MD's when it comes to those of us with chronic pain, fatigue, etc, etc... So dont be afraid to take an appointment with one of those @Mel17 .
It is inadvisable to mention depression or anxiety or any mental issue to the doctor, as it often serves as fuel for them to classify you as being hypochondriac. I suggest you only list physical symptoms.
Yeah, i wasn't sure about listing that, which is why I said *maybe*... altho.. who wouldn't be at least a little depressed with all the pain and such we deal with and no answers as to why?
I’m never given any information or feedback on results. I just have to be content with nothing to worry about.
That just is not right.. it is your health, and images related to that, you deserve to see the images and have things explained to you.
The clinic i go to (huge place with over 80 specialty departments) has a patient portal where one can log in and see test results, read imaging reports, schedule appointments, or verify they were made.. I can see everything but the images themselves (x-rays, MRI or CT scans) If I want to see the actual images, all I have to do is ask while at an appointment, and they can be brought up on the computer and shown to me - and because of problems with my lower back and neck (arthritis related mostly) I have asked to see them and have them explained to me and have gotten that. What many people dont realize is that Patients do have rights, and we are well within our rights to see anything related to our health. and yes, @Mel17 - even in the UK, you have the right to see your records, and that includes images.
Today while walking I took a tumble and the brain does not seem to be as clear as it once was
This is why i suggested taking someone with you to act as an advocate for you - to help you remember questions to ask, things to discuss, and an extra set of ears to take in what the doctor says.
 

johnsalmon

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I have had pain for several months my doctor did some blood tests which showed nothing and he just gave up on me. I made an appointment with a new doctor in town and by the second visit had medication that decreased the pain by the third visit she changed the medication and I am almost free of pain - no longer 10+ now 4 to 5 - the lesson here is if the doctor you are visiting is not making any difference then change doctors. (It is probably easier down here to change doctors compared to the USA ) She has also improved my COPD and hopefully will improve the effects of Hashimoto diease
 

Mel17

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@johnsalmon thanks I think I need more confidence in talking to them. Because I am taking meds for depression that seems to be the focus . I’m taking quite a few different medication 💊 but all treated as separate issues or wear an tear. Blood tests come back nothing to worry about. MRI scans nothing to worry about. X-ray oh that wear and tear ! Low thyroid, gastroenteritis, l pain in back , pain in legs 🦵 tingling in fingers , headaches , constipation, overactive bladder, fatigue , HRT patches etc but it’s all in my head ??? And I’m dealt with like I’m crazy and wasting doctors time . He could have helped me if he wanted to . Anyway onwards and upwards hoping the next doctor will treat me with compassion and help me. Thanks for the support on here it means a lot 🥲
 

sunkacola

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He could have helped me if he wanted to .
The unfortunate thing is that doctors cannot actually help you with fibromyalgia. There is no treatment that works for everyone nor even for most people, and there is no cure.

All that a doctor can do is write down fibromyalgia on your charts which only helps in terms of the next doctor seeing that and mabe taking you seriously as a result, or for something to put into forms. They really can't do anything else, other than maybe refer you to PT if that helps you.

And they can prescribe pain medication but that is truly not the way to deal with fibromyalgia.

Sure, get some meds if you want to, but do not take them daily and instead spend time working out what other things you can do for yourself so you will not be dependent on medication for pain. Especially since you are already taking other medications. Taking a lot of chemical medications is a poor approach to fibromyalgia because that will often increase the frequency and severity of your symptoms.

The thing about fibro is that the only person who can genuinely help you with your symptoms is yourself. You have to do your own experimenting and find out what works for you. I highly recommend that you read my post (below) and start today doing some of the things there in order to begin the process. I wrote that post because I on my own brought myself from barely getting out of bed in the morning and taking opiate medication to living a good life now with no medication except of occasional use, 2 or 3 times a month, rarely more.

Start trying things and report to us so we can encourage y ou.
 
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