Having Difficulty Getting Diagnosis

Posted by austin132 @austin132, Sep 10, 2021

Hello everyone, I am a 22 year old male that has been dealing with various different types of chronic pain throughout my body. I have seen my primary care physician 6 times and all times he has said that nothing looks to be wrong with me. He has run all the standard blood tests and all have come back perfectly normal.

The pain started 3 days after receiving vaccination but to this day I am still unsure if it is because of that. Only reason I bring it up in this thread is because I was a perfectly healthy athlete before hand. My heart is palpitating constantly, my head feels foggy and constantly hurts, my body feels fatigued even after getting 7-8 hours of sleep at night, and my upper and lower left parts of my abdomen constantly are in pain. My anxiety is spiking but I can’t take medicine for it due to bad reactions to SSRI’s. I have also had trouble holding in urine for long periods of time. If I drink any liquids, about 15-20 minutes later I have to use the restroom. The pain gets worse and worse each day but nothing has come up as the culprit. I don’t really know where to go from here as I was denied from being seen at the Rochester Mayo Clinic. I just need an answer as to how I can manage the fatigue and pain I am feeling. I slowly feel as if I am slipping away and I won’t know what is wrong with me until it’s to late. Anyone know of a direction I can take to get this sorted out?

Thank you!!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

When anxiety about my health issues was getting to be too much, I followed a therapist on YT who was excellent. Anxiety meds had the opposite effect on me.

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I have had 2 knee replacements on same knee within the last seven years. Pain on lateral side ever since. Pain with every step. Can't find a Dr. who can find the cause. CT scan, normai, many xrays, normal. I had a rhizotomy 6 weeks ago and that did nothing. I cannot find a Dr. to help me find out what is causing all this pain. The more I walk the more pain I have. My life has gone done hill because I used to be so active with so many physical activities which I can't do anymore. I live in Palm Springs, any ideas anyone?

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@judyangel

I have had 2 knee replacements on same knee within the last seven years. Pain on lateral side ever since. Pain with every step. Can't find a Dr. who can find the cause. CT scan, normai, many xrays, normal. I had a rhizotomy 6 weeks ago and that did nothing. I cannot find a Dr. to help me find out what is causing all this pain. The more I walk the more pain I have. My life has gone done hill because I used to be so active with so many physical activities which I can't do anymore. I live in Palm Springs, any ideas anyone?

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Sometimes a doctor is not the answer.
When the surgical site has healed, and imaging confirms that the parts are in the right place, it is time to evaluate body mechanics, muscle conditioning and gait.

That is the realm of a rehabilitation program with a skilled physical therapy team. I am talking about a complete assessment, by a PT or team who typically deal with difficult cases - much different that the folks who get you walking in the hall after surgery, and give you standard exercises to do at home.

When you have been disabled or in pain for a long time, your body tries to compensate, often making things worse. The goal is to analyze the problems, work on correcting each one. It may involve land and water exercise, machines, stretches...

It is neither quick nor easy, but worthwhile in the long run.
Sue

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Wow, that sounds just like what I'm going through! I had surgery for a tumor on my esophagus and healed quite quickly, then I got the COVID shot, and I have not been the same. I am always tired, I have chronic pain throughout my body, stomach problems, brain fog, and headaches constantly. I have been to my PCP, my Thoracic surgeon, Neurologist, Gastroenterologist.......ETC. AND NO ONE HAS ANY ANSWERS FOR ME!!!!! AND, now they want me to get a 'booster' shot...HAH NO WAY!!!! I'm sorry for you and what you are going through, if you find any answers, PLEASE post them, cuz I'm at my wits end! God bless you!

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@judyangel and @loribroda On the heals of what @sueinmn recommended, this may help to explain unexplainable pain:

https://youtu.be/8defN4iIbho
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@judyangel

I have had 2 knee replacements on same knee within the last seven years. Pain on lateral side ever since. Pain with every step. Can't find a Dr. who can find the cause. CT scan, normai, many xrays, normal. I had a rhizotomy 6 weeks ago and that did nothing. I cannot find a Dr. to help me find out what is causing all this pain. The more I walk the more pain I have. My life has gone done hill because I used to be so active with so many physical activities which I can't do anymore. I live in Palm Springs, any ideas anyone?

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Good evening @judyangel. I lived in Idyllwild above you for 23 years. There is one Orthopedic Surgeon that I would recommend to my very best friend and that is Dr. Rufus Gore at Eisenhower. Here is his statement that from my experience, he personifies. "“I’m a doctor first,” comments Dr. Gore. “I want patients to see that I genuinely care about them. I take the time to help them understand their injury and the treatment necessary to get them back to their normal activities as soon as possible.”

He handled my TKR and Reverse Shoulder and anything else that needed attention. The evening after my Reverse Shoulder Replacement, he came back to the hospital and sat for a couple of hours to make sure I was going to make it through the night without suffering. When my thumb was screaming at me, he grabbed my other hand and took me down a few floors for a personal introduction to a hand surgeon. He called the insurance company himself to fight for coverage for my Reverse Shoulder. To speed up the process, he personally escorted me for X-rays of my neck when it appeared that the pain wasn't another shoulder issue.

I haven't been in that neck of the woods for several years so he hasn't seen me in quite a while.
Have you been up to Idyllwild lately? I loved living there and had many customers from Palm Springs in my gallery.
May you be free of suffering and the causes of suffering.
Chris

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@rwinney

@judyangel and @loribroda On the heals of what @sueinmn recommended, this may help to explain unexplainable pain:

https://youtu.be/8defN4iIbho

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Thank you very much for posting that! And it does make a lot of sense, I need to get into one of them programs I guess.

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@loribroda

Thank you very much for posting that! And it does make a lot of sense, I need to get into one of them programs I guess.

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You're very welcome. It could be a fresh start for you.

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@cbsolomon

Did you take cupro, levaquin, or avelox sometime around when your symptoms began. These are fluoroquinolone antibiotics and can result in a condition called fluoroquinolone associated disability or fluoroquinolone toxicity. Many people afflicted with this condition and many doctors blow them off.

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I took levaquin 7 years ago and have been doing pretty well, but then had a terrible flare-up last June, with shoulder, arm, and leg pain. I'm still in pain but getting better, thanks to a wonderful functional medicine doctor and physical therapy. My recent problems started after taking amoxicillin, which I've taken many times before with no issues. But last fall I had a sinus infection that required amoxicillin (no reaction), a Covid booster (no reaction), a flu shot (got very painful bursitis in that arm, then had to have a steroid shot after putting up with the pain for 3 months), another Covid booster last spring, and then another course of amoxicillin because I got a terrible cough after the booster that lasted for 4 months. I think all these meds and vaccines were just too much for my poor floxed body to take. I'm not on several supplements and an anti-inflammatory diet, prescribed by the functional medicine doctor, and just finished PT for arm pain that was almost a frozen shoulder. Now I find I'm sensitive to several foods -- sugar, gluten, diary (except Greek yoghurt), wine, coffee. It's been really hard to follow this diet, and I assumed I could slowly reintroduce the foods listed above, but apparently not. I ate a hamburger bun last week and my arm and shoulder pain got worse and is still worse. This basically sucks, but I'm grateful I'm not in as much pain as I was last summer. I'll never get another flu shot, am probably done with Covid vaccines (I wear a mask everywhere), and will never take a steroid again. I hope I never need another antibiotic, but that would be asking too much.

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I relate! I too, am thinking that my chronic pain plus other symptoms are a result of the Cipro and Falgyl received following a GI bleed that was on the heels of a routine colonoscopy.

I am new to the forums and not sure of protocols. Maybe this copy/paste from a previous post is redundant but I offer to you in reply.
--
Hello ! I am Mary and am 76 years old. This is the part of my story that focuses on the possibility of fluoroquinolone-associated disability (FQAD) and my chronic pain.

Prior to a medical event in August of 2019, I lived an active life that included traveling, hiking, gardening, attending outdoor music festivals, hosting events, and extensively interacting with my husband, children & grandchildren.

Today, I am lucky to walk 50 yards to the mailbox and back. I suffer from body wide pain in muscles & tendons & trigger points. The debilitating pain moves around depending on what simple activity I might have engaged in but there is a general focus in my intercostal nerve network, neck, lower back, legs and feet. I have gastrointestinal discomfort. I have swollen and aching sinuses. I am dizzy. I am profoundly fatigued.

I no longer shop, drive, or participate in any trips and planned activities. I mostly turn out the lights and sit on the sofa.

I have spent 4 years on the “medical merry-go-round” visiting specialist after specialist with no clear-cut diagnosis much less a successful treatment plan. I could list the medical focus areas if that helps the dialog.

This is the short version of an extensive medical history and treatments as I want to start a dialog about the possibility that all my un-diagnosed medical issues over the last 4 years are associated with fluoroquinolone-associated disability (FQAD)

In August of 2019, I was hospitalized with a gastrointestinal bleed following a routine colonoscopy.
During the hospital stay I received :

• ciprofloxacin (generic for CIPRO) IVPB 400 mg [36899745]
o from 7/31/2019 – 8/3/2019
o 400 mg delivered every 12 hours for 60 minutes

• metroNIDAZOLE in NaCl (generic for FLAGYL) premix IVPB 500 mg [36899746]
o from 7/31/2019 – 8/3/2019
o 500 mg delivered every 6 hours for 60 minutes.

After discharge I received:

• ciprofloxacin 500mg tablet
o Commonly known as: generic for CIPRO
o 1 tablet (500 mg total) by mouth 2 (two) times a day for 7 days.

• metroNIDAZOLE 250mg tablet Commonly known as: generic for FLAGYL
o 1 tablet (250 mg total) by mouth 3 (three) times a day for 7 days.

I never really recovered from that trip to the hospital. The symptoms just get more varied and more intense. There are no flares & remissions just ongoing chronic distress. I stumbled upon the findings of FQAD and am interested in what others have to say,

Could FQAD be the “behind the curtain” root-cause of my torment and just have not surfaced in my search for help?

Thanks for reading my story and I look forward to your responses.

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