Having Difficulty Getting Diagnosis

My Granddaughter was diagnosed with CRPS after 5 DRs. One Orthopedic group suggesting they break her legs because her Femurs were a little crooked. A Physical Therapist put cast like supports on her ankles starting this mad pain taking her down a rabbit hole that no one has an answer for the intense pain of Complex Regional Pain Syndrome. The parents might end up taking her to Italy for treatment to relieve her pain. No one will give her pain pills. This has been a night mare.

There has been cases of the Johnson and Johnson causing blood clots. Was the Cardiologist aware if the type of shot you had.

I would have your primary doctor refer you to a gastroenterologist. I have been diagnosed by a gastroenterologist with Achalasia type 111recently and will hopefully soon be getting surgery, but of course your problem could be something else. I'll be seeing the surgeon for the first time in three days. The way I feel now; I too wonder if I will make it until then. I feel your pain; too much suffering it's not good. I just m ight have to beg by tomorrow to

@austin132

In reply to this part of your post “ how I can manage the fatigue and pain I am feeling.”

It is perfectly normal to feel the anxiety you are feeling.

One of the most helpful things for the anxiety is to just breathe. Do breathing exercises… there are many videos on the internet to help you do them properly. Make sure you use your diaphragm to breathe.

Do things to distract you from all that is going on.. read a book, play games on whatever device you use.

Eat as healthy as you are able… it will give you physical strength. To keep your energy level during the day try eating nutritious food throughout the day instead of three meals eat 4-6 times a day and no junk food for snacks. .. I am guilty of junk food for snacks.

Use some of that strength to do gentle exercises.. walking or gentle forms of something like yoga or tai chi exercises. Exercise will give you energy too.. even if they are just stretches.

If possible pick a time in the afternoon that you can lie down for 20-30 minutes. You don't have to take a nap. Let your mind wander to a place of enjoyment. Sometimes I just pretend I am in a movie and am on an adventure. .. this old lady sometimes becomes a sidekick of Indiana Jones 😁 .. sometimes just a beautiful hike in the mountains when I was growing up or a hike with my children. Sometimes memories of my grandparents. Just have a time without tv or internet or phone.

If you have a best friend even if it it is a pet.. talk with them .. they understand you. My husband is my best friend… but Ziggy my mama's mini poodle that I inherited is a great listener too and sometimes he just knows I will feel better if I pet him until my hand feels like it might fall off.

Talk here as much as you want… we understand that this is difficult for you. Some things said here are not worth a penny, but some are worth so much you could not put a price on them.

My best wishes.
ZeeGee

Hi Ginger,

Sorry for the late response. I have had a lot of Dr’s appointments and haven’t had the chance to login to reply. I don’t think I had worded my phrase correctly in my initial post. I did not have any sort of chronic pain until I had received the Covid 19 vaccine. That being said I was on no medications prior to receiving the shot. As for getting an appointment with an internist, I am not sure at the moment. My Dr. has thrown that idea out there but has since thought we need to go the GI and Urology route since those are my main two issues. I might need to bring that idea up again though because I need someone to see the picture as a whole. I feel sometimes the Dr’s I’m seeing are only looking at single symptoms when I feel there is a root cause to why the symptoms are happening. I’m not a Dr. so I can’t make any judgement calls like that but I get frustrated because of it. Thank you for the reply to my post!

Hi @dianecostella, Thank you for replying to my post. I am sorry to hear that it took you two years to get diagnosed with what you are dealing with. I hope everything is well with that. I am definitely not giving up and will search to the end of the earth for an answer as to why my body is not acting as it used to. I had not heard about the smart pill test until reading your post and am definitely going to be looking into it. I had been wondering if my stomach was not emptying at a normal rate as it feels like at times it takes a lot longer for my stomach to clear and the indigestion to stop. I appreciate your reply. Thank you!

You’re very welcome

@austin132 Looking at the whole picture is often crucial to putting pieces together and figuring out the issues to address. We cannot expect our primary care dr to be able to see what a specialist might see, that's for sure. In my health journey, I have learned to work with specialist of different sorts [oncologist, nephrologist, dermatologist, urologist, in addition to my primary care], and one thing is they look at the different things, but study the trends in my labwork. Keeping detailed notes about my symptoms help both them and me, noting specific things, times of day, food eaten, triggers, etc. This has helped me eliminate detrimental factors, and I don't have to rely on my memory to relate things to my team.

I will be interested to hear what your team finds out, and how it is resolved. Please let me know, and let me know if you have any other questions?
Ginger

Hello @austin132, I'm Rachel. Welcome to Connect. I'm sorry to read about your health confusions. I feel for your situation and do understand.

I'm wondering your time line of events. As in whether your frustrations and uncertainty with one health problem got the best of you and are causing things like possible stress related tension or migraine headaches? Other examples are; depression can cause sleepiness, anxiety can cause palpitations. Unfortunately, all these things can affect and increase the bodies response to symptoms. Does any of this sound possible?

You mentioned having various different types of chronic pain throughout your body. Outside of slight inflammation in your stomach, as testing defined, and headaches, you also mention tests were done for your heart. I'm assuming due to palpitations. Palpitations and exhaustion can reflect low B12 levels. Did you have your B12 level tested with all blood work? How about Lyme testing?

I commend you for persevering and being your own advocate. Process of elimination will help you rule out possibilities. Good luck with your pending specialist appointments, and take care of yourself along the way. Find happy distractions and give yourself grace. Things have a way of working themselves. Stay positive!

It sounds like you’re suffering unfortunate side effects of the vaccine some of which are known and some maybe not. Remember this is a whole new ball game for everyone regarding Covid. I didn’t see whether or not you were tested for Covid? You can get the virus even if you’ve been vaccinated! If you subscribe to XM Radio I suggest you call into the Emergency Medicine, Internal Medicine, Grand Rounds programs throughout the week and present your case. These doctors are from NYU Langon Hospital and experts throughout the country if you don’t are not satisfied with your PCP response. Good luck