Problems After TBI: Fibromyalgia or Something Else

Posted by 144000 @144000, Jan 29 7:10pm

In 2016 after a traumatic brain injury I started having pains throughout my body. I never got checked up on except the three staples in my head. Sept. of 2017 I started having seizures and they found a pituitary cyst in my brain and said it wasnt the cause of my seizures but because it was pushing on my eye it needed to be removed. I did that but continued to have seizures but not as many. Than put me on desmopressin for diabetes insipidus because they disturbed my pituitary (which means my body doesn’t hold water) and topomax for seizures. In 2019 I continued to experience pain numbness tingling stabbing headaches at the surgery site so the neurologist put me on a special diet. Didnt work. There were so many symptoms too many to list but they included extreme fatigue gut pain constipation and diarrhea body aches numbness and tingling stabbing pains through my body weight loss acne hair loss nausea extreme contraction like cramps in my girly parts sore painful limbs pain in my fingers and toes psoriatic like rash in hair nearly orange urine skin dry mouth. Hopefully you get the picture. They than said I may have fibromyalgia but didnt want to classify that yet but diagnosed IBS. Every symptom is getting worse and today it felt like someone stabbed me near the surgery site. It hurt so bad my eyes started hurting and watering. I’m barely 30. I have a son and a loving husband I can manage stress well but my health is going down the drain.

Hi why so many young people suffering from disease and illnesses now a days?! So feel for you and your precious family, my heart goes out to you guys, your really going through ruff time, especially after traumatic brain injury, my son went through this, he changed lifestyle and know it's difficult especially as your so young, with young child and family , he is sports naturist now he finds saunas help him and plenty of good healthy foods especially ginger root and turmeric fish oil, maybe star fish oil could help and garlic oil, also known lavender and other aromatherapy oils help heal , dandelion it's great to support health issues especially for helping water works , being sugar free too can help, ( free from as in refined sugars helps .) Please let me know how you get on….( what was your traumatic brain injury -head ?!) Kind regards swift ,
hug from England

Liked by Leonard, meme2eight

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@144000 Welcome to Mayo Connect. We are a diverse group of people who offer support and share our experiences with others. We are not medical doctors, but patients/family members/caregivers who want to share and help. You certainly have had quite the time of it! Have you been able to keep notes that you can show a medical professional? Such a list might include the symptoms, time of day, how long they last, etc. Do you have access to a teaching hospital or to a Mayo Clinic campus [Jacksonville, FL/Phoenix, AZ/Rochester, MN] that you can be referred to for a workup? It seems that all of these things going on with you need the care of some specialists! I hope that you can get some rest and will be able to come back here and let us know what is happening.
Ginger

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Hi, @144000 – I'd like to add my welcome to Mayo Clinic Connect and also invite into this discussion @lakelifelady @dawnpereda @gardeningjunkie @jakedduck1 @mamacita for their input into your situation with the TBI, potential fibromyalgia, rash and seizures.

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@lisalucier

Hi, @144000 – I'd like to add my welcome to Mayo Clinic Connect and also invite into this discussion @lakelifelady @dawnpereda @gardeningjunkie @jakedduck1 @mamacita for their input into your situation with the TBI, potential fibromyalgia, rash and seizures.

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I was in a catastrophic car accident in 2015 and among many other injuries, I suffered a TBI and have not been the same since. Every day is a new struggle with persistent dizziness, fatigue, a lurch to the left sometimes whenI walk and it feels like I have Bobblehead. Bright lights, noise and crowds having divergent conversations give my brain an overload and it feels like my head swells to two times it's size, tinnitus starts and I have trouble focusing my eyes. Sometimes I see a jagged halo where I must rest and drink caffeine. A silent migraine it is called. Recently I began to feel drenched in sweat but my skin is dry. There are other symptoms but too many to go into here. I attempt to maintain as normal a life as possible but mental and physical fatigue always is a consideration.

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@144000 welcome to Mayo Clinic Connect. We all have experiences with various diseases and conditions to varying degrees although we are not medical practioners . We have been where you are in many ways and because we got some answers we want you to as well

I was young when I began to show signs of Fibromyalgia. I have IBS .as well. They frequently occur together.

I also had a severe head injury in the early 2000's. My right side was numb for three days. I don't think I have been the same since.

I would encourage you to go to Mayo Clinic with your multiple symptoms.

If you cannot make it to one of our centers I hope that you will pursue this with a University Medical Center. They typically have the expertise to deal with multiple diagnoses.

Please let us know how you are getting along. Until you get some answers be encouraged. With many minds working together you never know when just one word connects with someone who finds a link and that link resonates and you share with your doctor and voila!

We recently had a situation where this kind of thing actually helped save someone's life. Our own @sirgalahad was extremely important when a local man ( our personal family friend) had complications and conditions that made doctors throw their hands up in despair.

They had gone everywhere to doctors. Test after test and still no answers. He ended up in ICU. After many discussions on here and private messages our friends were closing in on some answers.

Today he is getting the necessary treatment for a very rare condition. The doctors here in our town simply do not see enough of unusual or rare conditions to have that thought process of "Well could it posdibly be one of those things we studied about in medical college for all of about fifteen minutes?"

This is not to say we wear superhero capes around here. We don't. Hey I'm doing good to plow through my email in a timely manner.

But I will say this. This is a good community to be part of. We help each other.

We are better together.
Mamacita Jane

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@mamacita

@144000 welcome to Mayo Clinic Connect. We all have experiences with various diseases and conditions to varying degrees although we are not medical practioners . We have been where you are in many ways and because we got some answers we want you to as well

I was young when I began to show signs of Fibromyalgia. I have IBS .as well. They frequently occur together.

I also had a severe head injury in the early 2000's. My right side was numb for three days. I don't think I have been the same since.

I would encourage you to go to Mayo Clinic with your multiple symptoms.

If you cannot make it to one of our centers I hope that you will pursue this with a University Medical Center. They typically have the expertise to deal with multiple diagnoses.

Please let us know how you are getting along. Until you get some answers be encouraged. With many minds working together you never know when just one word connects with someone who finds a link and that link resonates and you share with your doctor and voila!

We recently had a situation where this kind of thing actually helped save someone's life. Our own @sirgalahad was extremely important when a local man ( our personal family friend) had complications and conditions that made doctors throw their hands up in despair.

They had gone everywhere to doctors. Test after test and still no answers. He ended up in ICU. After many discussions on here and private messages our friends were closing in on some answers.

Today he is getting the necessary treatment for a very rare condition. The doctors here in our town simply do not see enough of unusual or rare conditions to have that thought process of "Well could it posdibly be one of those things we studied about in medical college for all of about fifteen minutes?"

This is not to say we wear superhero capes around here. We don't. Hey I'm doing good to plow through my email in a timely manner.

But I will say this. This is a good community to be part of. We help each other.

We are better together.
Mamacita Jane

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Thank you so much. I wasnt looking for a diagnosis.. I think I was just looking for answers wondering if my doctor diagnosed me properly and the many different doctors I went to I'm just frustrated because no ones knows lol

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@144000

Thank you so much. I wasnt looking for a diagnosis.. I think I was just looking for answers wondering if my doctor diagnosed me properly and the many different doctors I went to I'm just frustrated because no ones knows lol

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@144000 Wrong name last post Hi I,LL add my welcome so glad you posted there are lots of good information here. I'm not sure what Dr,s you saw but one would be a good rheumatologist who has a good reputation in the field. You do have a lot going on so hope you take some advice we have left you with

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@144000

Thank you so much. I wasnt looking for a diagnosis.. I think I was just looking for answers wondering if my doctor diagnosed me properly and the many different doctors I went to I'm just frustrated because no ones knows lol

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@144000 I'm very much into holistic naturel items for healing Our body can heal itself if given the right food A good healthy diet,no junk food ,no white stuff ,flour,potatoes,rice,sugar. Naturel water without chemicals in it Epsom salts for soaking in tub Hot showers for pain and brings blood to surface no fried foods there's other things people may contribute Praying for you 🙏

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Thank you everyone. I'm going to take this information and keep searching for answers. I stopped going to the doctors office cause I was tired of being poked and observed all the time
I will go back with a different mindset

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Totally understand how you feel , natural resources are created by our precious heavenly father, he knows best way . doctors can only advice you it's up to each precious person, to use what makes sense for you. After all he will heal the national s soon HUG from England kind regards swift . Isa 4:29,31 James 4:8 Hope and pray for you .

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Hey @144000
Just wanted to put another two cents worth in.

Just like the other friend who wrote earlier our bodies are indeed wonderful marvelous creations of intricate design.

The closer to natural we can get is usually beneficial to every system in our bodies.

With Fibromyalgia I have been advised to eat a non inflammatory diet as much as possible.

Having had a couple of head injuries I tend to shy away from artificial substances that might potentially aggravate my inability to focus at times.

Being Type Two Diabetic makes me " eat to the meter." I have learned that certain normal everyday foods will raise my blood sugar.

Allergies to certain foods and environmental factors can be controlled.

Not easy but I want to live out my "three score and ten" and even longer if possible.

May the heavenly Father grant you every good gift and blessing.
Love and light
Mamacita Jane

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Hi @144000
One thing I forgot to mention.
When I drink diet sodas I end up having extreme pain in my muscles all over my body.

If I do without them and only have one when I am eating out it does not bother me.

Some folks tell me that aspartame is known to cause this type of unrelenting pain.

I dont know if this helps you personally as you may not consume those things anyway.

I do take magnesium routinely as well as calcium and a multivitamin and mineral combination. Our family routinely takes probiotics and extra viramin c when viruses are going around

We try to make vegetables interesting for our kiddos. We try not to eat out too very often even though we enjoy it.

Sending you a big helping of encouragement this morning!
Love and light
Mamacita Jane

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@mamacita and others . I use to do private duty for undertakers and formaldehyde is what they use to embalm this is what aspartame turns into in the body I never use Equal or the blue packets .

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@lionesss…..
Formaldehyde…..ye gads and little fishes.

That is absolutely horrendous.
Thank you for sharing that much needed (if a bit gruesome)information.

What will they think of next?!!

Someone is making tons of money off of people who like sodas but cannot take the sugar.

Guess its back to plain old water for me.
I'll live.

Love and light,
Mamacita Jane

Liked by lioness

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