Problems After TBI: Fibromyalgia or Something Else

Posted by 144000 @144000, Jan 29, 2020

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 @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

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@mamacita Companies are greedy they don't think of peoples health . Flavored water is good cucumber water Iove .

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My heart goes out to you! I can only imagine what it must be like to have a young child and spouse and try to keep going as much as you can! I had an chronic 'back ache' and often was unable to attend extended family gatherings which made me feel totally 'out of it'. My spouse passed away unexpectedly, and after a few 'falls' with several of my kiddos trying to help me get help, I actually walked out of a couple of hospitals, had MRI's on my cervical area, and lumbar area. I really felt like life was leaving me as it was getting 'dangerous' to even walk with a walker. FINALLY, the neurologist I was seeing sent me to Neuro surgeon who had looked at the MRI's for the current Dr. I was seeing..and saw something suspicious as the report showed the Cervical MRI grazed the Thoracic area. I was sent to the Neruo Surgeon, who sent me for an MRI immediately on my Thoracic region. BINGO! I had a calcified tumor wrapped around my spinal cord. in the Thoracic area! After two twelve hrs surgeries and a few vertebra removed and rods and screws in their place. I am living on my own, which DID require selling my home in another city and moving close to two of my children and living in a senior apt.complex. As an eighty some thing widow, I am enjoying life as much as possible. I do use my walker after a few falls…..have neuropathy in my left leg that still doesn't always get the 'message from the brain. I do have some nerve damage still, (taking 600 gabpentin sp?…never can spell that correctly) lol and also some Tramadol as needed for the nerve pain since there were lots of moving around of muscle and nerves tissue trying to access as much of the tumor as possible w/o disturbing the spinal cord as the tumor had been there so long that it was calcified. Bottom line is: please hesitate to classify someone with chronic pain as being a 'whinner' if Dr.'s can't diagnose the source of their pain……had many different suggestions as to 'what I would do if I were you" to 'forget about hurting. My heart goes out to 44000. I certainly will be praying for you. Wish I had something tangible to offer as I feel your pain.

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@meme2eight

My heart goes out to you! I can only imagine what it must be like to have a young child and spouse and try to keep going as much as you can! I had an chronic 'back ache' and often was unable to attend extended family gatherings which made me feel totally 'out of it'. My spouse passed away unexpectedly, and after a few 'falls' with several of my kiddos trying to help me get help, I actually walked out of a couple of hospitals, had MRI's on my cervical area, and lumbar area. I really felt like life was leaving me as it was getting 'dangerous' to even walk with a walker. FINALLY, the neurologist I was seeing sent me to Neuro surgeon who had looked at the MRI's for the current Dr. I was seeing..and saw something suspicious as the report showed the Cervical MRI grazed the Thoracic area. I was sent to the Neruo Surgeon, who sent me for an MRI immediately on my Thoracic region. BINGO! I had a calcified tumor wrapped around my spinal cord. in the Thoracic area! After two twelve hrs surgeries and a few vertebra removed and rods and screws in their place. I am living on my own, which DID require selling my home in another city and moving close to two of my children and living in a senior apt.complex. As an eighty some thing widow, I am enjoying life as much as possible. I do use my walker after a few falls…..have neuropathy in my left leg that still doesn't always get the 'message from the brain. I do have some nerve damage still, (taking 600 gabpentin sp?…never can spell that correctly) lol and also some Tramadol as needed for the nerve pain since there were lots of moving around of muscle and nerves tissue trying to access as much of the tumor as possible w/o disturbing the spinal cord as the tumor had been there so long that it was calcified. Bottom line is: please hesitate to classify someone with chronic pain as being a 'whinner' if Dr.'s can't diagnose the source of their pain……had many different suggestions as to 'what I would do if I were you" to 'forget about hurting. My heart goes out to 44000. I certainly will be praying for you. Wish I had something tangible to offer as I feel your pain.

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Thank you I almost cried reading this because the other day it was me and my 5 year old alone at home and I could barely walk and he let me put my hands on his shoulder to walk around just so sweet lol and I started thinking to myself am I going to need a Walker. Like some days are good and others just kill me and I cant move I dont want to get up. I'm not depressed and I dont feel sorry for myself I try to stay active. But man. Than this morning I coughed up blood and I've been pooping blood for the last two weeks I'm tired of being poked and analyzed and studied. Just tired. Hopeful. But tired.

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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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How do I join mic group

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@cathy514

How do I join mic group

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Hi, @cathy514 – I'm wondering if this is the discussion you are referencing on mild cognitive impairment https://connect.mayoclinic.org/discussion/mild-neurocognitive-disorder-due-to-multiple-etiologies/?

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