Feeling not listened to

[Deleted member 41929]

Hello All

I recently changed doctors because I wasn't feeling listened to. The best diagnosis I have gotten so far is to be sent to a neurologist who told me I had tennis elbow and golfers elbow and my left arm was weaker than my right-prescribe me some medication for my migraines (which I never took) and sent me on my way. I then asked for a referral to a rheumatologist and never heard about an appointment or even given the name of the Dr. I was referred to and I don't think I didn't ask. Anyway hence...the new Doctor who is starting from scratch with blood tests. So it is what it is at this point, however....Here are my symptoms, please tell me if I'm crazy......widespread burning sensation(like when you have goosebumps and you rub your arm to warm up, kind of feels like it burns a bit), brain fog, and attention issues, vertigo when I stepped off the treadmill last summer and now random dizziness (new symptom), always had migraines, have to wear soft clothes (tougher clothes feel like they hurt my skin), fatigue, fatigue, fatigue...wow....when did shoveling a little bit of snow make me feel like I've just climbed Mount Everest? Yikes...that's a big one for me. My muscles feel weaker and they definitely tire out more easily. Lifting weights and trying to work out went from 1 hour to 15-20 minutes with several breaks. I feel like I'm imagining things but I can't help but pay attention to my body because it's not acting like it used to and I'm only 42 years old so I know it's more than just my age.

Does anyone else remember what it was like at the very beginning stages and what you had to do to get doctors to listen to you?

Please help....

 

[sunkacola]

greetings, @falon13 and welcome to the forum.
You do not say that you have received a diagnosis of fibromyalgia. From what you say, your symptoms don't really add up to sounding like fibromyalgia to me, but take note that I am not a medical professional. I suggest that unless you have actually been tested for all of the many things which could be causing your symptoms, you don't go the route of assuming you have fibromyalgia. It may turn out you have something else entirely - something far easier to treat or even cure. Get tested for everything and wait to see.

Now, I don't know why doctors are making you feel that they are not listening to you. Some are just like that, unfortunately. But if, by any chance, you have told a doctor that you think you have fibromyalgia that might be a problem. I know from being on this forum for years that many doctors will take exception to it if a patient suggests to them what they think they have, and mentioning fibromyalgia is especially likely to cause a doctor to stop listening, if it is one of those backwards doctors who still don't believe that fibro even exists. This may not be what happened, I am only mentioning it.

My recommendations to people when they are going to see a doctor are the following:
1) Make sure you have your symptoms written down and then tell them to the doctor in a matter-of-fact way without emotion.
Emotion will only make you less believable, unfortunately.

2) Tell them how these symptoms affect your life....again without emotion...and keep it short and concise. Do not go into details or give a life history. Just say something short, like: these symptoms make it very difficult for me to work, and almost impossible for me to do X and Y which are activities that I enjoy, and on some days I am unable to do anything but stay in bed" ....or whatever. But keep it to two or three sentences.

3) Answer questions honestly and concisely...again, don't go into a lot of detail.

4) Stay calm and dignified at all times. If you feel the doctor is not listening to you or you don't like something they say, just tolerate it until you get out of the office, and then talk to a friend about it or come to the forum and vent. Do not get angry or demanding or argue with the doctor. If you do, the doctor may write unflattering things about you in your record and unfortunately they have the "last laugh" because that record is permanent and could affect how you are treated by the next doctor. This isn't fair, but it's the way things are.

Best of luck to you and let us know if we can help in any way.

 

[JamieMarc]

@falon13 please go to the library or buy the book The Fibro Manual by Ginevra Liptan MD. In your case in order to help answer your question, once you get it go immediately to the chapter called Helping Your Doctor Help You.

It will help you to look at your doctor as a partner willing to help you, give you some language to use with your doctor and other keys to help you have a discourse with a doctor willing to partner with you on this.

 

[Deleted member 41929]

Thank you so much. I really appreciate it.

 

[JamieMarc]

@falon13 My pleasure.

 

[Ian waxman]

Hello All

I recently changed doctors because I wasn't feeling listened to. The best diagnosis I have gotten so far is to be sent to a neurologist who told me I had tennis elbow and golfers elbow and my left arm was weaker than my right-prescribe me some medication for my migraines (which I never took) and sent me on my way. I then asked for a referral to a rheumatologist and never heard about an appointment or even given the name of the Dr. I was referred to and I don't think I didn't ask. Anyway hence...the new Doctor who is starting from scratch with blood tests. So it is what it is at this point, however....Here are my symptoms, please tell me if I'm crazy......widespread burning sensation(like when you have goosebumps and you rub your arm to warm up, kind of feels like it burns a bit), brain fog, and attention issues, vertigo when I stepped off the treadmill last summer and now random dizziness (new symptom), always had migraines, have to wear soft clothes (tougher clothes feel like they hurt my skin), fatigue, fatigue, fatigue...wow....when did shoveling a little bit of snow make me feel like I've just climbed Mount Everest? Yikes...that's a big one for me. My muscles feel weaker and they definitely tire out more easily. Lifting weights and trying to work out went from 1 hour to 15-20 minutes with several breaks. I feel like I'm imagining things but I can't help but pay attention to my body because it's not acting like it used to and I'm only 42 years old so I know it's more than just my age.

Does anyone else remember what it was like at the very beginning stages and what you had to do to get doctors to listen to you?

Please help....

I think you certainly need tests for m.e,fybro,just be honest with the doctor.tell him all your symptoms and if he or she’s a understanding doc they will send you for tests.tbh I kept going back to the docs with the same symptoms and he said you’ve got fybro but that’s not always the case.if the dr takes no notice try another dr.i hope you find the answer

 

[Radmun]

Hello, I’m a 55 yr old woman who has been working out 5 days a week in my late teens. Five years ago started feeling strange symptoms such as my normal clothes were hurting me. Cause nerve pain in my head, too much pressure on stomach cause bloating, stomach pain, and tons of burping. I no longer can wear a bra, only loose waist band pants (no more jeans), and loose shirts and everything must be cotton because of sensitivity to other fabrics. I, too, had issues with vertigo but it has subsided since I was prescribed Amitriptyline, Tizanidine, and trigger point injections in my trapezoid muscles. Unfortunately, I cannot workout like I used to. A 20 minute workout every other day is what my body can tolerate and I cannot do repetition movements because muscle fatigue will happen and my legs or shoulders start hurting too much. I was first diagnosed with Myofascial Syndrome and eventually Fibromyalgia. The two go hand in hand, apparently. My best advice would be to find a University Pain Clinic.