Why Does Everything Hurt So Much After Brain Injury?

Question: 

No one talks about how people who have a brain injury also have pain everywhere. I mean, after a TBI, everything hurts. And when you ask doctors about it, they say it’s psychological. But it sure doesn’t feel that way. Why is this happening, and what can I do?

Answer: 

Studies show that more than 50 percent of people suffer from chronic pain disorders in the years following a brain injury. Headaches and neuropathic (nerve-related) pain is most commonly from injury to the head and neck. Other common sources of pain include spasticity (increased muscle tension from brain injury), heterotopic ossification (bone forming outside the skeleton), deep venous thrombosis, genitourinary and gastrointestinal disorders, and orthopedic trauma (ie, fractures and other muscle and bone injuries). The head is the most common location of pain. Interestingly, people with milder brain injury have higher rates of complaints of headaches when compared to those with moderate and severe brain injury. The reason for the higher rates of headaches with milder severity brain injury is not well understood.

Doctors can effectively treat pain by identifying it, quantifying it, reviewing the history of the person’s pain, and understanding how it limits function. Memory and language problems may limit effective communication for some people with TBI, increasing the complexity of evaluation of where the pain is coming from. A careful evaluation including discussion with other treating clinicians and family members may be required is some cases for effective evaluation.

Treatment of pain is a balancing act when considering medications since many medications to treat pain can worsen memory and cause sleepiness, especially in the opioid and antidepressant classes. Patients with TBI may be even more vulnerable than other patients to the cognitive side effects of certain pain medications. Because of this, the use of non-sedating analgesics (eg, acetaminophen, non-steroidal anti-inflammatory drugs, and transdermal lidocaine patches) should be a first line in treating pain in patients with TBI. Mood disturbance can be caused by chronic pain or worsen chronic pain and needs to be addressed as part of treatment.

Please refer to this comprehensive article regarding the treatment of headaches.

More on TBI-related headaches.

Spasticity is another cause of pain more commonly seen after moderate to severe brain injury.

Watch this video with Dr. Greenwald about TBI-related spasticity.

Posted on BrainLine April 16, 2014. Reviewed July 26, 2018.

Comments (42)

Hi, in February of 2007 I suffered a TBI with brain stem involvement at 21 years old and spent 2 weeks in a coma. Several years of Congnitive, Physical, Vestibular, etc therapies and I was doing much better.
Over the last few years I've been having pain in limbs and loss of strength and my PT believes it is due to nerve damage.
After some research I'm showing that symptoms of MS are pretty much line for line with TBI symptoms.
My question is will nerve damage begin to show 10 years after the TBI or is this likely due to some other underlying illness?

Any help would be appreciated.

Thanks

I am sorry for all the pain I read about. I hope that one day we will be all pain free.
Doctors who care will do their best to try to help but their hands are tied.
I have tried everything .
The brain doctor notice when they put a tens unit on me it made it worse.
She said we really don't know much about the brain.
And brain and pain we don't know anything .
She said for years doctors would not treat chronic pain because it was easy to blame the patient and tell them it was a mental problem so the patient left them killed themselves. Now they are doing it again. i can't take this anymore i am tired

I feel your pain brother...literally. I dislike going to the doctor because of its frustrating nature. There are so many underlying problems that they always
Fall back on the Brain surgery I had. Pains that don’t feel neuropic that I want answers for, blood flow problems to extremities, I’m finding out if you had a TBI it is even more difficult to get diagnosed with anything else. I have a friend who has been diagnosed with MS and we literally go through the same misery, although she has a few more distinctive things then I have. I think it takes a little luck to get the care we need. Good luck to you...your not alone.

I’ve only had one honest doctor. Right before my brain aneurysm blew, I asked my primary care doctor why am I having all this pain in my head. He said I’ve done everything your disability healthcare will let me. Then it blew. I’m still here!!!

I fell 700 feet with my chute in a spiral twist 27 years ago. I woke up 12 hrs later in the Army hospital. I told doc my right was moving side to side, back hurt, legs, ankles, feet. My head was killing me. He said that would go away. The pain got worse. It felt like I got kicked in the nuts. This was at ft. Bragg (I am airborne). The docs gave me valium for my back and 800mg motrin 2 tabs 4 x day. It did not work.
 
They sent me to Berlin. While there I was taken to hospital because I could not stand. The surgeon said he found a large growth in my left groin area he took it out now I am in worste pain. They medevac me to Walter Reed for 3 months. Docs said 2 options: put you on pain meds (oxycodone) the rest of my life or cut nerves out of the back to lower extremities (no nerves no pain). This was during 1985 to 1989. Army put me out. Went to the VA and they kept cutting nerves and the pain got worse.
 
Then I met a Doctor yes a real Doctor. He said it's in my head. He said I will send you to a doctor who teaches about TBI. She said the reason for pain is your brain is caught in a loop from your jump injury. Now when you have surgery or get hurt your brain goes into loop. So after 16 surgeries and hundreds of spinal injections, I have an answer.
 
My Doctor prescribed oxycodone 10 mg 4 a day and time relief morphine 15 mg. For years I have been ok, then I told Doc let's refuse the morphine from 3 to 2 if ok 1 then to none. I was doing ok but the pain never stops but I don't fall down from the 10 plus pain.
 
Now I've moved to AZ so my wife could help her mother. I was scared. My Doctor told me not to worry that everything is in my records and he gave me 3 months of meds until I find a doctor. My psychiatrist and pain doctor told me to try cannabis while there in AZ.
 
I told my doc at VA what they said he said he was ok with it . Then VA brought me in for drug testing, then doc told me he couldn't give me any more pain meds because I have cannabis in my system. This was before Christmas. Well, I called him I told him you said it was ok to try cannabis I told him if you said no I would not have tried it so he said wait 7 days and test again if neg I will get meds for you. I did not eat anymore. I was neg. But now he said I can't do 4 a day only 3.
 
I am now going thru pain that puts me on the ground. I can't go thru this again. Doctors back home went through years to get me on the lowest to have some sort of life.
 
And when I tried cannabis my nightmares were gone and I slept the whole night.
 
I am a soldier I have been thru combat where I had 17 comrades die all around me. I had to kill to survive. Now with PTSD, TBI, chronic pain I have come to the end. I love my Country. I would do it again. I am a special operations soldier.
 

While my fellow Americans slept I was out there protecting you.

I am now asking one last time
 

Help me .

I can't imagine the pain you have endured all these years. I've suffered with headaches from an accident the past 4 years. I finally got them under control with acutherapy about 6 months ago. Now another accident has me with a concussion and back in pain. My new doctor, for the past year, is sending me for neurofeedback, it's supposed to retrain the brain. I don't have my first session until July 8 so can not tell you more. My acutherapist recommended it too. It may be something to look into. Good luck with your pain management.

Thank you for your service and the sacrifice you have made.
I have had 4 TBI in the course of 5 years. I was in insane levels of pain. I took no narcotics because I am a single mom to an amazing child. I was considered non compliant because I refused meds. I knew the risks associated with them. Two things that literally saved me from constant torture...
Eliminating all nightshade veggies (tomatoes, potatoes, all peppers, paprika, eggplant). It was a hard thing to do, but my head and body hurt so much after my TBIs that I was willing to try anything. (Nightshade plants are the most inflammatory foods)
Within a week my pain levels went down so much I actually felt somewhat normal. It's been a year since I cut them out and I haven't even had a single headache. Who would think something as simple as that (non lethal and totally legal) could be such a benefit. I also started doing EMDR for ptsd. Because of the multiple head injuries, I started with 30 seconds and worked up to 30 minutes. People with ptsd but without TBI usually do it for 60-90 a session. I will not try that long. I don't need to. Doing it in shorter increments have been beneficial so there's no point...

Even if you don't try these suggestions, I wish you the best in your recovery.
~Iris

First off ... thank you for your service!!! It doesn’t get said enough, but thank you!

I was a driver in a absolute HORRIFIC car wreck. I hit a tree head-on at over 60mph. I flatlined several times, fractured my skull, busted my spine up, fractured several vertebrae’s, and tons more broken and fractured bones. I don’t remember a lot about it. I am in constant pain. I have practically begged docs in my area to do more tests. Things aren’t right ... I was released way to soon from the hospital, I wasn’t even able to walk on my own when I was released. I was using a walker, barely even able to get around even with that. I’ve been told I have a severe brain injury. Docs say it’s just the “aftermath” of the concussion. Balance issues and memory issues are common. Docs gave me fentanyl, OxyContin and some other pain meds while I was in the NICU unit.

When I was released, they prescribed Ibprofin which has cause bleeding in my stomach and intestines so I don’t take that any longer. They say things will get better in time. They won’t give me anything for the pain ... which is hard. I’m expected to do things I honestly can’t do. People don’t understand the pain is soo bad.

I finally broke down and went to the eye doc cause I’m actually losing sight I. One of my eyes. The eye doc immediately sent me to another one, who in turn said I needed to have an MRI done ASAP. Said that whatever’s going on with the vision is behind my eyes. It’s definitely scary.

She actually gave me a “recipe” with essential oils for the pain. Weird ... but it helps some. Some relief is way better than none.

I was wondering if you or anybody else might have any suggestions or anything for I guess more relief of some sort. Anything ... hope to hear from someone soon.

This is one of the most heartbreaking situations. I am so sorry your going through this. The fact that they are refusing your pain meds due to cannabis is absolutely ridiculous. Cannabis is safe and can be used with opiods in severe cases.

I hope this information helps you: first make sure to have vitamin c, b12, zinc and magnesium on hand (i know this sounds strange, but stay with me). know that the PTSD and TBI are connected to depression, which also makes your symptoms worse - so make sure your working with a therapist. Get 3 months worth of pain killers. Dont worry, i am not going to recommend you stay on pain killers, they will cause addiction and you may never find real relief, and they are toxic. OK (here is the kicker, but it is worth a try, so dont reject this right away) - try full spectrum CBD oil. It HAS to have a low level of THC .3% in it which will make you test dirty (go off of the CBD during testing time, its so minimal it comes out of your system right away).

I know MJ works for the nightmares and sleep, but CBD is what gets rid of the pain and inflammation. There is a TON of information regarding the safety and research of CBD. Full spectrum CBD extract is a non-psychoactive blend healing compounds, like cannabinoids, omega oils, and essential fatty acids, lipids, and terpenes. CBD extract with super low THC will not get you high. ... It should have no more than.3% THC. I have used a brand called "deep relief 1500 MG " (and no i dont work for them) but I gave it to my son who also has TBI and Fibromyalgia and it helps significantly. He still has to take the other vitamins listed above and we are trying him on saw palmetto (reduces inflammation which causes pain) and French grape seed extract. Not sure if those will also help. I know its a hard transition, but i with all my heart recommend using the deep relief or an equivalent CBD oil. I am not a Dr. I am a mother, a friend and a sister who has sent this to my loved ones and everyone came back with less pain. I hope this helps. Thank you, by the way, for serving our country. I am really sorry that your going through this, its not fair, but your not alone. :-) Prayers of a pain free life coming your way sir.

Hello ... I just read your comment. Where can I get this? I am in soo much pain and docs in my area won’t prescribe pain meds. I hit a tree head on at over 60mph ... I have a TBI ... I struggle everyday. Fractured my skull, spine, broke my elbow, wrist, hand, arm, leg and ankle. As well as I had a broken eye socket and broke my nose. I’m in constant pain, I can’t sleep (get approx 2hrs a night) j have nightmares of things that happened before I wrecked.

I know opioids are addictive. I honestly just really want natural relief so to speak. Hope to hear from you soon ...:

Try EMDR therapy. Worth a shot. Good luck.

Hi all, my first TBI I suffered around 17 yrs. Ago after being run over while skiing "the wall" in California by another skier. Prior to that, I was very athletic as well as active.
Along with it came grand mal seizures, and a laundry list of other ailments.
I am having a big problem that began a few years ago when I had almost a year where my seizures were out of control causing, you guessed it, more brain injures and more injures in general. Included was a broken neck to 3rd and 4th degree burns over a good part of my body and around 8 month's in the hospital and rehab hospital.
My foot, legs, back, head and neck are fairly messed up and the pain is unbearable much of the time rendering me an in pain - unable to function - couch potato with a lot of clothes that need washing in addition to other thing's.
My main problem here and trying to find an answer to is why, after being taken to the local (and really bad) ER room due to my seizures, was I diagnosed with overdosing? This has happened 3 time's. 2 times, in the last month and a half and once 2 yrs. Ago. The crazy thing about this is that the first time it happened, I was being given a particular medication by an RN every day. I didn't even own any or have any in my possession. During that time too, my seizures were out of control and I couldn't hold anything for long without it flying out of my hands up to 20 ft. Away. What I'm trying to say is for a good week before this happened to me 2 yrs. Ago, I never even got all the medication in my mouth the RN handed me to take this not getting the full doses! Yet during this time I experienced my usual grand mal seizures, was taken to the local (very bad) hospital and diagnosed as having overdosed on the medication I was being given by the nurse - as she had for the 2 previous year's. My caregiver, friend's, the nurse and myself haven't been able to figure this out. Which brings me to the past 2 month's in which it happened twice only I was diagnosed with over dosing on different, but prescribed medications. One of the two times happened 2 day's before my refills were due and didn't have enough medication to overdose on! I should add too that When I broke my neck, I also ended up with a pace maker because my heart would stop every so often and I haven't had it checked since it was put in. (Yes, I do have an appt. Coming up hahaha) I got so tired of doctor's, I kind of took a little vacation from them. I can't remember if I had it when the first overdose was diagnosed. I may have. I didn't have anything in my system I wasn't supposed to have at any time and these happened after I had a grand mal seizure every time. My problem now Is that these overdosing diagnosis are in my records in the national records databases. No doctor can treat me for my pain management. My recent doctor told me he'd be happy to see me again AFTER I fix my record's. So, that is a huge problem for many reasons in addition to it'd probably behoove me to find out why this is happening to me. I'm not nor have entertained the idea of overdosing and dying but have come real close because of whatever it is that's causing my respiratory system to shut down. I don't know why the hospital diagnosed me as an overdose just because their tox screen showed certain medications or, IF (and, I don't know this to be true or not) the screening showed the levels of the medications, how come they would have read higher than they were? I took these medications with the same doses and exactly the prescribed way for year's. How do I find out what's causing this, what kind of doctor can help me or, will know why this happens, how do I prevent it from happening again, how do I "FIX" my medical record's, how can I get a doctor to treat me now for my pain management.... I'm lost, I'm in pain and don't know what to do. I'd even be willing to take a polygraph test to prove I didn't cause my "overdosing" 3 time's. Does anyone have any idea's at all ?? I will be eternally grateful for any advice or help!! God Bless and try to enjoy every minute of every day!! Thank you! Shari G.

I had a TBI from a snowboarding accident back in 2015. Originally thought to be deceased but now doin pretty good. One issue is the constant pain/numbness/tingling/weakness along my whole right side. Knock wood,I don’t get headaches or seizures and I sleep good. Tried cannabis oil which didn’t work so good for me. Take NSAIDs (aleve, ibuprofen) but don’t like to take too much. Tried acupuncture with minimal result.

please try neurofeedback / biofeedback therapy for help- it works with no drugs

I have chronic pain after TBI and was wondering is it the same as Fybromyalga?

I am experiencing the same thing after a concussion I experienced in January. i was also thinking Fibromyalgia. Everything hurts and discomforts I experience from working out are so much more painful and uncomfortable. It is as if my pain is magnified.

I had my concussion a week ago and now my whole body aches. I can't even sleep because I can't get comfortable from the pain. I have to keep changing sides and not much longer after I have to adjust my body or my legs. It's awful.

I had chronic pain from both fibromyalgia and small fiber neuropathy before my fall and concussion but at 3 weeks out my pain has also been greatly amplified. Tramadol dose that used to work is not touching the pain anymore. Seems like exacerbation of pain is seldom mentioned as a concussion after effect.

Since I was 8 years old I played football, baseball, plus rode bulls and bareback broncs though High School. I turned Pro on some of the minor league Rodeo Circuits while still in High School, upon graduation I was drafted to play MLB baseball but chose scholarship to play baseball and rodeo in college and also earned my membership card and right to ride in the PRCA (the main Pro Rodeo Association) and had a 9+ year full time professional rodeo career with 4 years part time while managing Metallurgical Engineering and Inspection Companies. Over that period I received a total of 17 documented Concussions, Traumatic Brain Injuries, Closed Brain Injuries, this doesn't include the many head injuries of the same types that wasn't documented because I refused to go to doctor. I'm not sure what the difference is between those three types of head injuries or if they're basically the same and it just depends on what doctor writes it down. I also had many broken bones including neck, my back numerous times, femur, shoulders, ribs, punctured lung and many more. I have less bones that haven't been broken than have. I thought I was the luckiest person in the world because I didn't think I had any long term adverse effects. I was President of Worldwide Company, elected President of Union Contractors Association for United States, owned highly diversified 1000 acre Ranch with programs to assure students, and single parents a successful future, plus started several other companies to help people in need, Church with community outreach programs to feed the hungry, taught weekly class to help people with addictions, life problems, trade certification, anything to help change lives of people in need. Other than headaches, body aches, and pains that was tolerable I thought I was fine. Then in 2003 I was in an accident where truck flipped numerous times. Besides my head banging against the glass each time truck flipped before shattering it, the truck came to rest on passenger side with my head underneath of it. I was actually pronounced DOS before a miracle from God brought me back to life, but my life has never been the same. I guess it was like the straw that broke the camel's back, the one head injury too many, or just time for all of the head injuries from the past to catch up with me. After wreck I started having constant headaches, with many deabilitating headaches each week. I started having all types of seizures even while asleep which is scariest thing anyone can endure, different types of blackouts from actually hitting floor out to going into blank stare totally unaware of everything around me, delayed thought process, speech problems from delayed speech, stuttering, could no longer taste, severe memory issues, cognitive issues, motion/movement disorders, mood disorders, shaking, twitching and jerking all of the time even when trying to sleep which brought on sleep issues since wreck I only sleep in cat naps from 5-25 minutes at a time, hearing issues from constant loud roaring in my ears, plus much more but the pain that started after that head injury has been totally unbearable. I could no longer work and had to go on disability, I couldn't drive, I lost everything I had, I lost my family the thing I loved most in this world, and had to move in with my father because I had to have a live in caregiver. All of the pain from all of my broken bones and Injuries from the past that I'd always been able to live with was suddenly so excruciating that I couldn't function, I couldn't do anything. Doctors gave me medications for everything including pain but nothing would help. I was having seizures everyday, blackouts, and pain was so bad it would actually bring tears. It took over 5 years before they found combination of different medications to work on my seizures, concentration, pain, etc. Because of the pain I was in bed all of the time alternating heat, ice, and tenz unit in addition to everything else. For many years I had no quality of life, I had no life. I had three minor strokes, went through daily rehab, speech therapy, and physical therapy for almost 10 years along with working with the best doctors just so I could have a life and be a father since I'm a single, and to have some kind of life. My doctors, the combination of medications they gave me I was finally able to actually start living and be a father again. I went from being in bed 80%-90% of the time to being in bed 35%-50% of the time. I could do things with my sons, we even went on vacation several times but that's all changed recently. As everyone is aware of the CDC has changed dose limits for pain medication, restricted other medications from being written with them and continue to do other things that I'm sure is has taken away the quality of life from many other patients that have always done everything by the book and followed all laws, and regulations. I believe if people will go back and review the CDC study that was performed before they lowered dose limits they'll see an extremely flawed study filled with inaccuracies, untruths, and misleading information. I know that we have a major issue with opiate abuse in America and things have to be done to change the problems. But why take from patients who have a documented medical history that follow all guidelines like they're supposed to whose medical issues will never get better and will probably get worse. I'd like to have some type of life again. I'd love to be a father again. No one understands how painful this is physically and mentally. I wish they'd take into consideration people like myself who were finally doing well, finally had a life then the snatched it away. I never really was aware that my brain injuries had anything to do with all of my pain issues. If anyone else has these problems please comment.

heya, i have a similar story in that i had multiple concussions that i was able to cope with fairly well, and then one final concussion that caused massive cognitive problems, working memory issues, muscle spasticity, dystonia, and serious emotional issues. i do not ask for pain medicine, because it just isn't happening, but also because opiates are not helpful for me. but i have terrible muscle spasms and i cannot even get valium for the spasticity after twice breaking my neck. so - you are not alone. subjecting people to this kind of suffering is twisted, i agree. but our whole culture is twisted, so it makes sense that vulnerable people are experiencing that in the extreme. pray for a miracle. cause we're not getting out of this any other way.

Hey JH, Man alive your contributions list makes my Career of being an at home Mom seem tiny in comparison. And, my pain issues stem from a much unheard of by highly dangerous mile long list of adverse reactions to Antibiotics in the FQ Class, Cipro, Levaquin, Avelox. These are such powerful antibiotics it’s like sending an Abrams Tank to kill a Misquito when used for minor infections, like reoccurring sinus or bladder infections. Bottom line there are 3 black box warning on them, the most ever listed on ANY med, that hasn’t been just removed from the market. Some people will say, Oh I took that & I was fine. The research is showing that it is a kind of Russian Roulette. The body might not reach it’s copasity to cope w/how like Chemo, It was originally developed for, wipes out the immune system and injures many or all other symptoms of the body. Bottom line? Unless you have Pneumonia or something you will likely DIE if you don’t allow them to give it to you, the Risks do NOT outweigh the Benefits. There should be signed consent from anyone in need of taking it. One lady said. I am grateful it kept the pneumonia from killing me, but it doesn’t make me any LESS disabled/riddled w/from 1,2-40,50 adverse (reactions). The (reactions) finally got their OWN black box warning in 2013, year after my Uninformed Dr gave it to me. And, the latest Black Box warns, on page 7 of the package insert had the words, “May cause severe, or permanent disabiling side effects”. I trusted my Dr wouldn’t give me a toxic, dangerous med, & the info wasn’t being made readily available to ALL physicians. In fact I would STILL not know, nor understand why my body started falling apart, had my Thyroid Dr not been extremely well read, and when I wrote on the new patient paper work that I was taking Levaquin. He asked me, “Are you aware that the Antibiotics you are taking are likely the reason your Achilles Tendon is torn in 1 leg, strained badly in the other, Orthopedic boots on BOTH legs, and your Thyroid going crazy?” To which I went Deer in headlights! He told me don’t take not another single capsule & tell your GP you are having Adverse Reactions to the FQ Antibodies. Then he said, know what I will call her when you leave. I started understanding just how bad it might be when my GP was calling me before I could back out of my parking space! To add insult to (injuries), before I truly understood how bad it was, I let a Neurosurgeon who should have known more than me about FQ’s do a Cervical Neck Fusion Surgery on me. To describe trying to “recover” from a surgery that determined whether or not your neck would ever hold your head again w/o a collar because my Neurosurgeon didn’t want my muscles to weaken. Turns out, he DIDN’T know or admit to knowing that the effects of the FQ severely slowed down the healing process, & in fact made the nerve damage pain in my neck actually worse NOT better. Then, because my Med Ins forced us to use the generic form of the Toxic Antibiotic, because I live in this State, I am not allowed to take part in a Class Action Suit, nor win a personal case, UNTIL they allow victims to sue for damages from the Generics. A Loophole the pharmaceutical companies gladly jumped thru. I know there will be people who will potentially read this and say, oh that will never happen to me. It is & is becoming more widespread everyday! Even though, many Drs are still unwilling to accept or admit the severity of the damages. The Neurological, Psychological, Anxiety for many, is so bad, many of us have been accused of the pain, many symptoms are all in our head! I won’t preach much longer. But know this, it absolutely breeches the blood brain barrier, it literally CHANGES your DNA, & it can do it in as little as 1,2,3 doses! I took a14 run Jan 2012, my Tendon issues, Thyroid & Neck were all roaring by March, my Neck hurt so bad I naively agreed to Fusion in May. The Foot Specialist saved me from another surgery I wouldn’t have healed from when I told him I was scheduled for the Neck Surgery. I am a blessed victim, because like many, I am not in a wheelchair, or on Oxygen, etc. 2 more important points, the 1st 3 adverse effects most people experience ARE Achilles Tendon Issues, & acute, body wide pain! I know you understand what I am talking about. But for those who don’t. Imagine the worse Flu body aches, stomach, leg, body head aches. And then, a constant near feeling of such anxiety you feel completely panicked ALL the time! Now keep in mind there are as many as 40+ other things it can do to you including killing you outright. That is especially true for elderly, immune compromised people, children, even your pets aren’t safe taking it in ANY form. If the letters “FLOX” are in the name & you won’t die w/o it, tell them, NO thank you! They CAN give you a Antibiotic that isn’t synthetic like this poison. For the Non-believers, & the concerned, PLEASE don’t just take my word for it. Go online, google, look up, Adverse side effects of Cipro, or Levaquin, etc, it has many names, the chemical name is, “Fluoroquinolone”, that’s why many just call them FQ’s. But, I promise you on the love of my children, the Benefit does ((NOT)) outweigh the risks! And, please tell everyone you love. As you know better than MANY, there are some things you wouldn’t wish on ANYONE, especially if you just warning a few of them to look it up! But, lastly, on the new Guidelines Release from the CDC. I pissed off this rotating PA at my Pain Man Office by reminding her it states they are Guidelines not Law! I almost couldn’t keep going there, she wrote down false things I didn’t say in my file, purposely trying to make me look bad. Thankfully my managing Physician, has more experience & isn’t as afraid of anyone coming for his license. Even so, he has decreased me slightly, & I agreed to try it for fear of losing more for being uncooperative. And, it HAS absolutely reduced the quality of my entire family’s lives. We are a 1 income household, & in my State At Home Mom’s aren’t even considered for Disability. So my husband ends up working 60+ hrs a week for the best Salary he can find thus far. Ins doesn’t pay for some of my Med due to a high deductible. So, I feel extreme guilt going thru so much of the money my family needs. So, I could NOT agree w/you more about the Abuser’s of Opioids causing TRUE Chronic Pain Patients to suffer, have poor to no quality of life, when they have NEVER abused their meds, altered their dosage, etc. It’s the Drs, Patients abusing the Meds that should be (policed), NOT genuine Chronic Pain Patients! The Conscientious Drs should NOT be so afraid that they deny the patients in genuine need for better quality of life because it isn’t getting better w/o the Meds! I wish SOMEONE w/a loud voice on Capital Hill would advocate for us. My Husband is so frustrated he has made calls, meetings. But, I fear we are going to end up as collateral damage in the NEW War on Drugs! For Drugs that should NOT be AS available for those who are NOT IN chronic pain & IN Pain Management! God Bless you Friend, & everyone else who is suffering unnecessarily! More people need to speak out, all journeys start w/1 step!

I'm really sorry to hear about your struggles. I hope and pray things have gotten better for you since writing this. You are a strong man for making it through all you have in life. I like you lived a hard life and am paying for it now. I continue to search for answers to the daily pain I go through with no end in sight. 20 concussions or so caught up and getting out of bed is a struggle. I recently lost all I had as well. I'm putting my faith in God and going to stay positive. I have to be here for my son's just like you do for your family. God bless

if you have access, get yourself indica-based edible marijuana--like a chocolate bar--and find the right dose (usually quite small) to quiet inflammation, which will reduce pain. look for someone to do cranial sacral work on your skull--if you have no resources, see if you can become a training subject for someone learning the modality--it can also loosen up skull plates and allow nervous system to operate robustly again. if not, practice gentle touch of your own skull and find the pulse of sacral fluid in the soft spot of your head. also acupuncture and chinese herbs address inflammation as little in western medicine does. also add fish oil to your regimen. there's hope. you have to keep moving in all ways.

good advice! i am starting cranio-sacral. and using indica and cbd heavy strains. thank you for saying something encouraging and helpful. xx

I fell and went unconscious for a minute maybe. I didn't have insurance (2012) and went to county ER by myself because I thought I had a stroke since I woke up stiff, hands curled, toes pointing twd my head. I had no idea it was from the fall. I didn't mention the fall to the ER Dr who did a brain scan to check for stroke. No sign of stroke. I told the Dr I was slobbering all over myself in my sleep (I know now I was seizing). The headaches have pretty much stopped, but my body has fallen apart with Fibromyalgia, chronic fatigue, memory issues, cognitive issues, etc. Totally disabled. I really didn't really it was due to that fall I experienced in 2012 until recently. I was mostly in bed until a couple yrs ago. My spine is giving out on me now. I take the 2nd to lowest dose of oxycodone every 4 to 6 hrs as needed. Always law abiding, never in trouble. I won't mention the head injury to my Dr though since all the opiate politics recently. I've already been harassed, humiliated by one doctor in urgent care (I went for treatment of the flu--not narcotics) because I take an opiate pain killer which I declined for 6 months because I was hoping MD could find alternative to more pills. After my most recent MRI, I took a family member w/me to my Dr appt. My doctor said I had legitimate reason to be on the pain killer. I wish the doctors and politicians would think of human beings before money and their standing in society. It's truly disgusting. Also, the drug addicts are self medicating because they are in pain physically, mentally, emotionally, or any combination of those since one effects the other. The root of the problem lies underneath the drug abuse. Taking away meds from law abiding pain sufferers, or even from addicts (who are pain sufferers as well) is not the answer.

I've tried Marijuana, only as edible, not smoking. Through some trial and error, I have found the best pain relief without any side effects. I know it's illegal in some states, and that some people think it is a terrible drug, but it relieves pain.

I was attacked in prison. I was beat into unconciousness and they continued to beat and kick my head even after I was out. Then they stabbed me. There was no guard on duty. I was taken to the hopsital to stitch me up and CT scan. I was not even held overnight. I was taken back to prison. I went through three weeks of vomitting , blury vision , memory loss , hearing loss. And I kept falling asleep. I had no depth perception. For three weeks I compained and it fell deaf ears. My head felt like a bucket of water. Later the VA did a mri found nothing once I was released. But I wanted to know if the webbing of my hands being shallow and the other not a sign of head trauma. I was told yes. I have memory loss and lots and lots of pain all over my body. I still vomit and have lots of naseau. I have pin's and needles alao.

My neurologist wanted to do Botulism injections for the head and neck pain, but my insurance would not approve it. I'm on Lyrica, which works better than Neutotin, tramadol, topiramate, and one that starts with a L. Acetaminophen IV's seemed to help me some. I get the burning Charlie Horses that feel like my veins are having the Charlie Horse, instead of my muscles. I get a lot of cramping, in my legs, toes, fingers. I've had a pacemaker put in. I'm now dealing with Narcolepsy, and excessive daytime sleepiness. I take meds to stay awake, they don't always work. I don't like the way my brain feels on Narcotics, so I won't take them. I've seen too many family members become addicted to pain medications, alcohol, and cigarettes. I know the pain I'm experiencing in my neck, shoulders, and back are from the accident and are definitely nerve related. I had some young Physical Therapist try and tell me it was muscle pain. Believe me, I know the difference. I'd rather have muscle pain over Nerve pain. Sometimes my migraines are so bad, all I can do is sleep. Other times, I'm in so much pain, I can't sleep. Because of my sleep disorders, I don't like taking anything that makes my brain fuzzier than it is, so I won't take narcotics. I had my Pacemaker replaced last May, and just had a local anesthetic. I was awake, talking to my Electrophysiologist, the Medtronic representative, the Nurse, and other two individuals during my procedure. I just have local anesthetic when I get RF in my lumbar and cervical spine. Sometimes the tingling nerve pain is so bad, I can't walk, or I don't want anything touching my skin. I use a lot of ice, to numb my skin. Tiger Balm helps with headaches, sometimes. I'm trying to use more numbing agents that are applied topically, like Deep Blue, Biofreeze, etc. Sometimes it will numb the pain long enough for me to fall asleep. I used to use Xyrem for my sleep issues. But because of my cognitive issues, I was afraid of accidentally taking a second dose in error, not always a big deal when you take the lowest dose of some medications. Problem with Xyrem - the first side affect listed is death. I could see where Xyrem would help you sleep through the pain, but I don't know if they have tested it to be used that way, or if the FDA would approve using it to help patients with severe pain, to be able to sleep through the pain for a while, because sometimes sleep is the only thing that will help get rid of a migraine. I should check with my sleep specialist, and see if they could check with the drug manufacturer and answer the questions concerning FDA approval for nerve pain patients. I'll ask my pain management MD, and Neurologist as well. I have realized that if focus on the pain, it tends to get worse. I've increased my tolerance for pain by ignoring it. Running around barefoot in the snow may have helped as well. I have started wearing coats during blizzards, but not always. Therapist tell you to hold a piece of ice, tightly in your hand, to try and shock your brain out of being stuck on the same thought, or issue. I can hold a piece of ice in my hand until it's completely gone and it doesn't bother me. I'd try numbing the nerve endings. Put water on some wash cloths. Fold so it will fit on your forehead, place it into a snack, or sandwich bag. If you feel a headache coming on, have nerve pain in your back, or legs, place the washcloth on, or towel, and let it numb the area. Watch out for frostbite. Repeat as many times as it takes for your brain to stop recognizing the pain sensors, and try to have some much needed sleep. You might need to have someone assist you, just in case you do fall asleep, so you don't get Frost bite. Try Tiger Balm and ice together. Or, Biofreeze and ice. Or, Deep Blue and ice. If you try it and it helps, I will be so happy to hear you've found some relief. I feel for you! Pain sucks!
I've just been diagnosed with post concussion syndrome and it sucks! I have little pains in my muscle every now again. I'm only 14 and it reallly really is the worst thing in my life so far !!

Hey I'm 19 and have had p.c.s for two an a half years man it really does suck, it makes everything in life ten times tougher for me its vision an horrible anxiety, I feel your pain man hang in there there will be a cure for all of us soon but all p.c.s victims gotta speak out an make it aware to people because most don't even know what post concussion syndrome is, stay strong dan,

Amen to you speaking out as well. I’m 20 months into PCS and as some symptoms were thought to have subsided, I was mistaken with one relapse after another. I’m not sure if it will be a life long battle, I surely hope not. But it’s a day to day struggle that has broken my suppossive iron clad spirit. The brain fog and confusion and anxiety and pain that comes with this injury is invisible to the naked eye. So it feels as if we are in this struggle alone and in the dark to its legitimacy when it comes to the medical world. Many drs will question the legitimacy of symptoms. And connected them to anxiety. This drives a steak through my chest. And angers me far more than my now constant emotional outbursts I have from no longer being able to control my emotional behavior.
We know our body’s. drs give us only moments of there time to explain ourselves then cast judgement, not a prognosis. It’s daunting to question people of there stature. But I know who I was prior to injury. And that person fails to exist currently. And when you feel as if your thoughts are slipping into quick sand faster than you can grab them. Or your head throbs to the beat of your pulse. Or you feel displaced in the world. And disoriented. Among a thousand other issues, I would say thats far greater then a psychological issue. In fact the anxiety which we are plagued by is real but it’s not the cause, it’s a side effect to our inability to function in everyday life.

I had brain surgery to place a VP shunt. Sometime during or in post op, I suffered a minor stroke. 3 years later, I have unexplained pain ranging from migraine headaches, to severe pain in muscles and joints. I have to wonder if the brain trauma caused this.

To Marc: I feel so bad for your pain. I recently have been learning about concussions due to my own injury in June 2016. Science & the medical world are learning more & more about the nature & the sometimes life altering symptoms of concussions. They are learning that they don't go away with time, in fact if you push it they can increasingly get worse later. I learned about vision therapy from a neuro optomotrist. & cranial sacral therapy helped mine. Also getting strong, non addicting sleep medicine & pain pills help to heal your brain. But I was told to use pain, eye sensitivity, & fatigue/stress as warning signs of overdoing it & when you don't rest from the brain completely it will only get worse. So I don't take pain med during the day, instead I rest with ice in a dark room. At night I take herbs for stress & adrenals & essential fatty acids ( the brain needs healthy fat). I also take non addicting sleeping pills (trezadone) & as heavy pain pill as is prescribed to sleep. They say minimum 10 to 12 hours a night of sleep in order to recover from a concussion. Even though rest is vital & necessary during the day or for days until the pain or fatigue or hearing or eye sensitivity eases, it should not take the place of sleep. Also drinking Atleast a gallon of water every day is essential for brain healing. If you could get disability temporarily & focus on healing the brain injuries you would have a better chance of actually healing. I was living in a dark room for 4 to 5 days only to have tolerable relief for half a day, until I started doing these things & changed chiropractor, and started cranial sacral for concussion and got sleep medicine. Up until the last few days, I have pretty much lived in a dark room with heat & ice & book on cd for the last 3 months due to debilitating migraines from an undiagnosed concussion & torn neck ligaments. I finally feel some hope. My good days last until about 2 then back to the dark. My email is ladymisslmp@gmail.com if you are interested in learning more of what I am. I don't normally respond to these chat things. Sincerely Jill

Hello,

 My name is Marc. I've never been diagnosed with anything other than 2 concussions within a close period of time, following an accident in which the crash was so quick and violent that my seatbelt buckle broke and I was tossed into the windshield, causing concussion. Shortly after this, within 1.5 years I experienced an accident where I was at work and my hard hat dropped off and my head got smashed by something from above me off of a staging, knocking myself unconscious, then I awoke in the hospital.. I was working again after this as a groundman for a lineman as he loaded a steel jug with a cleaning solvent into a canvas grunt sack, suspended from an aerial messenger line. I heard "Look out!" and bang, down I went. Knocked so hard in the top of the hard hat I thought my neck was broken. Since this time, my life has slowly changed and has become a complete nightmare, over the years, transforming me into a daily and nightly headache, neck ache and back ache filled miserable person that would see doctor after doctor for nearly 15 years before I finally explained my condition to the right doctor capable of making a real diagnosis for the first time. I have been plagued with more full body 5 hour long mri's, more ct scans, x rays,ultra sounds and such that I should hold a record for not dying from being overexposed to these fields. My suffering which included painful constant muscle spasms, massive head and neck pain, burning eyes, loss of memory, and awful episodes of random nerve pains, burning in the legs, I mean like they were on fire, constant bone breaks that happen so easily, and now 2 ruptures of the distal bicep tendons, one 4 years ago putting up a baby gate on my left arm, and one just weeks ago pulling a snow blower into my shed after rearranging my shed after the season's last mowing of the lawn.. These tears happened too easily, there is something plaguing me other than this pain disease... .. I'm suffering in agony, typing one finger with my non dominant hand, praying to God to get some sleep, teary eyed, depressed, wishing something would help.. pain killers only take the edge off, they only make me not care about the pain if I take double the dose, more than I should, but I'm limited to pain meds because my normal breakthru pain meds and long term meds stopped working to assist the pain and are mostly worthless since the recent injury. Advil helps to cure 10-15%  of the acute pain but gives me bleeding ulcers that make me vomit advil acids up looking like scabbed blood is in it. It seems nothing stops the suffering and agony. I sometimes I wish I would die , but I have a very loving  family to support and I could never do anything so unfair or cowardly as taking my life. I really don't know what to do, I have constant rf nerve blocks done on my neck, every 6-9 months...  my neck pain returned 2 weeks ago along with spasms after my bicep injury, and I just had the rf block done in July. I have no idea what to do.. I need help with the pain, it's driving me insane it hurts so bad and my mind seems to be playing tricks on me, I'm getting shooting burning pains everywhere as if people are dying cigarettes out on me periodically, this is no joke. I wake at night from this and have had nightmares of getting shot, then wake from one of these pains and cant go back to sleep.. nothing helps. I need pain meds, but I need something else with it to assist me. I've tried neurontin, it makes me feel nutso and doesn't kill the pain, I've tried lyrica without success. I've taken every oxy, roxy, morphine, dilaudid, opana, you name it, even have self medicated over the years with the wrong things and have never found anything that helped the pains go away. I've been on Medrol dosepacks and it'd help for 2 weeks but it'd return worse than it was. I just don't understand. How can one's heart problems and functions disappear like magic but be in so much pain and be so depressed for so long? Why doesn't this pain disease go away? What can help me? My only med that helps anything significantly is a neuropathic pain compound made of amitryptylene, neurontin, lidocain and another med plus an icy hot base or similar and an old non drowsy muscle relaxer / pain reliever called lorzone. If I don't take it daily,my pains become worse. It's awful.it seems as if it works, but causes more painful pains as a side effect if i forget to take it. aspirin won't help, tylenol does nothing and it feel;s as if maybe i only had a pool filled with liquid lidocaine would be my only option. please help.. i need somebody's assistance with names of meds to ask my doctor to try to give samples of, anything to reduce my agony without having to lose my current meds. At this point, it isn't an option for me to lose them, I'd never get to work. i'm lucky to be able to get up  and out of bed for 5am because I've been up most of the night in pain. I take my meds while in bed, enabling me to barely get out of my bed because the pains are so debilitating until the wake up pains are relieved somewhat so I could rise, have coffee and get to work by 7, that is if I am lucky enough for the meds to kick in. It's the only time I feel them anymore, empty stomach in the am. 

Hello. I suffered my TBI in 1993, when I was 22. I seem to remember a lot of "body" pain afterwards, but I think things got a little better, for a while. Of course, I was also on Amitriptylene for several years. I am on nothing as of now, except Ibuprofen and alcohol. I am a functional abuser of alcohol. I don't drink during the week, because of work, but I usually drink and sleep all weekend. I've been trying not to do that as much, and I hurt quite a bit. I've also noticed that the older I get, the more reclusive I get. I don't go out and/or socialize much. I don't go do things with people (unless drinking is involved). I seem to either go to work, or sit in my recliner or go to bed... I don't enjoy my life anymore.

My mom had a ruptured brain aneurysm and she is recovering. Next month it will have been a year since they saved her life by inserting a coil. She has improved tremendously but her biggest deficits are her short term memory and severe weakness in her left side arm and legs. She says her leg hurts and that's why she walks funny (sort of a skip/limp as she does not extend her leg in the normal stride manner. She says it feels like it's asleep but she can move it if directed. Is this nerve damage? What can I do to accelerate healing or help her in any way? I want her to be a able to walk unassisted but safely and I will do anything to help reach that goal.

Hello, I too have a tbi, My pain started around a year after the injury, ,which was to the thalamus area of My right side. I take Lyrica and opiods, both of which lose their effectiveness, over time. I have sharp, burning pain on My entire left side, including the left side of my face. I believe that most of the pain is from poor circulation due to incorrect signals from the brain. It would be nice to have a pain free day, or part of one, it just does not get better for more than a few hours every week. I have sounds in my ears, hissing, and like crickets, 24/7. Walking is a miserable situation as I am worn out by simply taking a shower. If active one day, i have to sleep the entire next day or more to get any strength back at all. My domain is My bed and  My bedroom, Where the difference is that I did run a .8 billion dollar restaurant chain, rarely felt tired, and was never in the bed or inside. My condition is gradually getting worse, I am in hope that there will be improvements in pain and movement. My body is very spastic as well. All of this does get to Me when challenges face Me in My family, as I feel unable to fight back, to work, to protect My 4 children. I thank My family for keeping Me out of an institution. I do seem to have My thoughts in place, close to normal, any slight distraction creates confusion, i have to take everything slowly. It, at first seemed that My mind was lilke scrambled eggs and the Lord has allowed this to improve. We all want to work, there is no way, Huge changes from day to day, and minute

I suffered a severe TBI with hemoraging of the brain which had to be cauterized, it happened in 1987 when I was 24. Now at 53 years old I am experiencing severe headaches and much nerve pain in my right hip. The doctor's say I need a new hip. I am very blatant about being a survivor of a severe TBI. I cannot find a Dr. whom will do the research, to understand that it is just Nerve pain that I suffer from? 

Hi, my name is Lori I am a TBI Survivor. My Head Trauma was just descovered, it is 34 years old. I've had 7 or more Concussions, Bruises on Brain and Contutions. I Fractured my Skull in half down the back, when it happened I was drunk. The injury was Intercranial, so I didn't go to the hospital, my friends were taking me, but we saw a bar. Anyhow it was about 10 days later when I couldn't close my mouth that I went. Also the popping sound in my head was like listening to a bowl of Rice Krisspies. Needless to say it was a big deal. I followed up for 4 to 5 years. My Doctor at the time said to me, it's a good thing I was drunk. So a stayed drunk for 7 more years. I entered A.A. in 1988. That is when I began to have problems. In 34 years I went to Doctor after Doctor, took pill after pill, Hospitals, Institutions etc.... we who have TBI know the route. Enough on the introduction. I would like to answer your question, because it is also my question. WHY in 34 years was I NEVER given a QEEG. This one simple test has put me as a TBI member and survivor. I am already detoxing off one of the we most addicting, Klonapin. I am so early in recovery and the damage so severe. I Breathe 20 minutes 4 Times a day, using the essential oil Frankencense, changed my diet to include Brain food and excersises. MY MISSION IS TO MAKE THIS ONE SIMPLE TEST known. And it be the test that Doctors use for anyone having past HEAD INJURIES. I also believe that this test should be given to the Prisoners that are filling are correctional System. I'll end with this, CAPITALISING on the health of Humanity has got to stop. DAMMIT man.

Hi - I have had the same experience, of having chronic body pain after weaning myself off the antidepressants.

You are so on point I feel like you know me personally. Especially about the lesser head injury more pain issue. My Husband has a Dirty Crack all the way acrossed his head from a non-helmet injury where he slammed his motorcycle into a metal light pole head first lauching him 60ft backwards. The only thing that bothers him is drastic air pressure. Me I get trip at work on some boards crossed a Safetyline, And I have all kinds of issues. From migraines,.. Inner ear concussion, breathing issues while sleeping, and so on and so on.

It will have been 17yrs since my severe TBI in August of 2014.  Now that I have finally been weaned off anti-depressants, I am beginning to experience more peripheral neuropathy.  Also, my head feels like it is in a vice.  Is it possible that all the years of being on anti-depressant medication masked the things I am experiencing now?  Thanks...Kerry Mischka