1. < Chronic Pain

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!!

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lakeside1999 | @lakeside1999 | Nov 10, 2022
In reply to @mlm666 "I relate! I too, am thinking that my chronic pain plus other symptoms are a result..." + (show)
@mlm666

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.

Jump to this post

I'm so sorry, Mary. My advice is to find a functional medicine doctor. The Mayo Clinic has a list of them state by state. Get some blood work done and get on some supplements to detox. You can also get IV infusions, which I understand work faster because they bypass the GI system and get right into your bloodstream. Unfortunately, I'd have to travel 3 hours one way to have these treatments, so I'm waiting until the spring to see how I'm doing, then I'll decide about IV treatments. A traditional doctor won't help you with this problem.

REPLY
2 replies
lidiana | @lidiana | Nov 10, 2022

I understand this… follow up this post. Hope you get the proper care you need soon 🙏🏻 blessings of healing for everyone ❤️‍🩹
REPLY
mlm666 | @mlm666 | Nov 10, 2022
In reply to @lakeside1999 "I'm so sorry, Mary. My advice is to find a functional medicine doctor. The Mayo Clinic..." + (show)
@lakeside1999

I'm so sorry, Mary. My advice is to find a functional medicine doctor. The Mayo Clinic has a list of them state by state. Get some blood work done and get on some supplements to detox. You can also get IV infusions, which I understand work faster because they bypass the GI system and get right into your bloodstream. Unfortunately, I'd have to travel 3 hours one way to have these treatments, so I'm waiting until the spring to see how I'm doing, then I'll decide about IV treatments. A traditional doctor won't help you with this problem.

Jump to this post

Thank you! Please share what type of blood work should be tested and what supplements are you recommending?

I will look into Functional Medicine list.

REPLY
mlm666 | @mlm666 | Nov 10, 2022
In reply to @lakeside1999 "I'm so sorry, Mary. My advice is to find a functional medicine doctor. The Mayo Clinic..." + (show)
@lakeside1999

I'm so sorry, Mary. My advice is to find a functional medicine doctor. The Mayo Clinic has a list of them state by state. Get some blood work done and get on some supplements to detox. You can also get IV infusions, which I understand work faster because they bypass the GI system and get right into your bloodstream. Unfortunately, I'd have to travel 3 hours one way to have these treatments, so I'm waiting until the spring to see how I'm doing, then I'll decide about IV treatments. A traditional doctor won't help you with this problem.

Jump to this post

I could not find the specific link to the Mayo list of functional medicine doctors by state. Please share a link and thank you.

REPLY
deborahfischer | @deborahfischer | Nov 22, 2022

First, I am so sorry to hear of the symptoms you have been having and I am experiencing some of the same things and had a Tetanus vaccine nearly 3 years ago I believe also caused some of what I have going on today: I live in 24/7 paraspinal spasm (contraction) of neck and face and allodynia (hypersensitivity) on forehead and abnormal sensations on right side of head. My abdomen was contracted for 4 months and I STILL deal with urgency and frequency (although x-ray just revealed significant bone spurs L4 and L5 potentially affecting the nerves there. I cramp frequently throughout my body, have unstable neck (according to digital motion xray stating that all of the ligaments connecting skull to cervical neck are lax or torn and although doctors say traditional MRI reveals a TON cannot attribute this to the contraction of neck and face). I developed an arrythmia (premature atrial contraction) and have palpitations every day/all day impeding my ability to get to sleep and awaken me every day. Dr. tell me PAC are benign (although articles say increased risk of developing AFib). Therefore, I stopped working out as walking up my stairs triggers them. I used to lift weights 3 days per week and cardio the other 3. I have been denied by Mayo in Arizona TWICE.

As nobody has been able to help me, I paid for my own labs...routine blood tests find only Vitamin D deficiency and high cholesterol. Dr. said buy any over the counter without dosaging advice to correct. I've started taking a quality multi as well as Vitamin D and calcium (I'm post menopausal). You can test for some additional things on your own such as micronutrient test, hormone etc through companies like "anylabtestnow" at personal expense then bring results to your doctor. Do not start supplements until speaking with them. I have also suffered from gastroesophageal reflux disease fairly consistently for 10 years...google Dr. Sanjay Gupta...I just found his video on YouTube suggesting a correlation between acid reflux and heart palpitations. Since I started taking acid reducers again as well as multivitamins, my heart palpitations are not gone but "quieter." Good luck.

REPLY
1 reply
windyshores | @windyshores | Nov 23, 2022
In reply to @deborahfischer "First, I am so sorry to hear of the symptoms you have been having and I..." + (show)
@deborahfischer

First, I am so sorry to hear of the symptoms you have been having and I am experiencing some of the same things and had a Tetanus vaccine nearly 3 years ago I believe also caused some of what I have going on today: I live in 24/7 paraspinal spasm (contraction) of neck and face and allodynia (hypersensitivity) on forehead and abnormal sensations on right side of head. My abdomen was contracted for 4 months and I STILL deal with urgency and frequency (although x-ray just revealed significant bone spurs L4 and L5 potentially affecting the nerves there. I cramp frequently throughout my body, have unstable neck (according to digital motion xray stating that all of the ligaments connecting skull to cervical neck are lax or torn and although doctors say traditional MRI reveals a TON cannot attribute this to the contraction of neck and face). I developed an arrythmia (premature atrial contraction) and have palpitations every day/all day impeding my ability to get to sleep and awaken me every day. Dr. tell me PAC are benign (although articles say increased risk of developing AFib). Therefore, I stopped working out as walking up my stairs triggers them. I used to lift weights 3 days per week and cardio the other 3. I have been denied by Mayo in Arizona TWICE.

As nobody has been able to help me, I paid for my own labs...routine blood tests find only Vitamin D deficiency and high cholesterol. Dr. said buy any over the counter without dosaging advice to correct. I've started taking a quality multi as well as Vitamin D and calcium (I'm post menopausal). You can test for some additional things on your own such as micronutrient test, hormone etc through companies like "anylabtestnow" at personal expense then bring results to your doctor. Do not start supplements until speaking with them. I have also suffered from gastroesophageal reflux disease fairly consistently for 10 years...google Dr. Sanjay Gupta...I just found his video on YouTube suggesting a correlation between acid reflux and heart palpitations. Since I started taking acid reducers again as well as multivitamins, my heart palpitations are not gone but "quieter." Good luck.

Jump to this post

@deborahfischer I also have muscle contractions in neck, shoulder, arm, hip, leg- all on left side. And "paresthesias" including intense numb sensations on left side of face (CT didn't show tumor).

I don't have the energy to pursue diagnosis and treatment honestly. Currently dealing with PT who doesn't get it. I do have a lupus diagnosis and two docs have suggested MS (other symptoms such as dizziness and nystagmus). But I doubt the MS. I have baclofen on hand but cannot tolerate more than 5mg once in awhile.

I have afib once a year and it is dramatic, so I end up in ER with high heart rate of 180 and shortness of breath. But it is not the end of the world. I started taking potassium in the form of low sodium V-8 (high level in that) and take magnesium at night. Knock on wood, no afib for 18 months. I also never eat after 5 or 6 because late eating is a trigger.

Be careful with acid blockers. I use Zantac or Pepcid but only as needed. Early dinner, Tums and sleeping angled up all help. Good luck! And let me know of any suggestions for me!

REPLY
geraldmosier | @geraldmosier | Feb 3, 2023

Resurch, do the work on your own. I'm not doing a diagnosis but I had a simular problem with the same reaction from the mayo clinic. After painstaking efforts I demanded to be seen at wich time my findings were confirmed don't take no for an answer.

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