I have very long pain Story. It has started with 16 years in Secondary School.
I have got double Sinusitis inflammation.
All kinds of therapies didn't help me.
Until my 25th year. I was then working in Germany. One day after many visiting ORL doctors, I went to Neurologist. I didn't expect much, as so many times before. He looked at me. We were talking maybe 15 minutes. After that he gave me injection between neck and scapula, right. After 5-10 minutes all my pains (eyes, cheekbone and jawbone pains, pressure in the face) were over. I didn't believe, what is going on. How come, I had no more pains? As I remember, diagnosis was Trigeminal Neuralgia.
It was good for five years. I have to tell here, that those pains change my look 100%. My face became nice, no more swollen and pale. People around me called me a model. At once I became popular between men and had the best chances. After 3 months was engaged to one American student.
Because I had no private life before and didn't get Visit Visa for USA, after my fiance left, I made more and more mistakes in my private life. Maybe to get back all my lost years with pains? All those mistakes, I am paying now.
With 30 years I came back to my Country. In Juni I came back and was few months at home. Then went to my friend in the big city to look after her children. At the same time was looking for a job. I have got them next year in March, when I have started to work in tourism.
My pains came slowly back. I have forgot Neurologist and went again to the doctors for Ear, Nose and Throat. It was no help from them. 1989 I wrote letter to Zurich, Switzerland and have sent 5 diagnosis from ORL hospital in my Country. They wrote me back, I have to find a cause.
In next years, I have visited all possible specialists. As first to see my Thyroid. I was right, I have Hypotireosis. Next was Neurologist, I told her about Trigeminal Neuralgia. She didn't believe to me, because was not typical. She gave me drugs Tegretol, which made me totally finished, very sleepy. That was not the right thing. All was for nothing. Because in abroad, I have got therapy with Fango (hot, black mud) and was pretty good, I have continued with them. Here we have it only in the Spa, what is to pay. 1992, I was in the Spa on the coast and doctor there told me, after Acupuncture points, that the cause for my pains is in the neck. 1994, first time I went private to my doctor for Sinusitis and he wrote, I have Trigeminal Neuralgia 1. and 2. 1996, again in the Spa, I had massage, the woman there told me, there is something wrong with my right shoulder. She may not make massage, I have to go to the Orthopaedist. 1997, X-rays have shown, that I have some swollen muscle on the right shoulder joint. Next year, I have got diagnosis: Enthesopatia levator scapula. Doctor has asked me, if I had some injury. I didn't. Finally I came to the cause for my Sinusitis and Neuralgia pains. He gave me Sirdalud, drugs for muscle spasm. I took it together with Tramadol (both have Hydrocloride) and was much better for 2 years. But, that was not the end. From December 2000, I had no more painkillers: no drugs, no therapy. Nothing.
I must also mention, that from 1996 I was visiting Russian specialists, Chiropractics. They told me, that my muscles are making compression to the nerve (from C5) in the bottom of the neck. The very sharp pain is going over my backhead direct to the right eye and sinusitis. At the same time my face is swollen, even muscles bellow my chin on the both sides are swollen. I get sleepy, can't open my eyes. Most of doctors told me, all is from neck muscles.
As I had nothing against the pains, I have left my job, May 2001.
Since then, all went to the ground. I had additional examinations. They have seen all. But help is nowhere. In last 10 days I have got Acupuncture, didn't help.
My pains start on the scapula muscle (always swollen), that belongs to the lower part of Levator scapula; go over the head into right eye. Much worse is if I press on the muscle with my finger. I feel how pain is going all over head into face. There beside right eye is very painful, as I have there top of the knife. My sinusitis membrane is always swollen and dry, nothing flows away. There is air, or as doctor told me, vacuum in the middle nose shell.
One Russian doctor, 1996 has looked in IRIS (eyes) and told me, my liver (where I have few small cysts) is also cause for muscle spasm, trigger points or muscle tension (I don't know,what is right from all that).
After four suicide tries (in neighbur country), after loss of all (I had Bank Loan, had to pay 150,00 euros per month, have borrowed money until 2006), I get per month 200,00 euros since May 2002. So, I have debts, about 9.400 euros (together with apartment, which is now by Insurance company, they gave it to the Court). As I have no money to pay 6.600,00 euros, I have to leave very soon. My pains are every day worse. I want to work, but Neuralgias are very painful. I can do nothing, although I speak fluent German, French and a bit Spanish.
NOW, I DON'T KNOW WHAT TO DO WITH MY PAINS, WHERE TO GO, WHO IS GOING TO HELP ME?
I have done and tried all possible. I can only die, if I want to be without pains.
My sister is in my ex-Country, living in neighbur's house, lives from Social Help as I do. We have lost our house, 1995 (because of the war in Croatia).
Without good or optimal health, there is little, we can do in life and career!
Oh yes! I can relate. I would love to talk to you...I just signed up today on this site and cannot figure out how to post my own story!?!?!? Can you instruct me? I have read and read and clicked on everything! No luck!!!
I would love to talk to you. Have you been to pain management Dr's? I am on 200 mcg of Duragesic patches every 2 days---since 2003! I am facing a surgery---again---and really scared that no one will be able to treat or believe the amount of pain I will be in---bcuz of the large amount of Duragesic I have been on! My Dr knows, and tells me not to worry---they will take care of me. I went thru opiate detox a few yrs back, it was hell. I will NOT go thru it like that again. There has to be a new and improved way!?! I have 3 weeks, and then I am going thru another total knee replacement. If I give you my email address, can we chat that way? I am not even sure I will know HOW to check this site to see if you reply to this message! It's confusing for me! I am 45---and feel 95 sometimes! LOL
My mane is Joey.
I am 30 years old.
I work full time as an I.T. Manager here in Southern Cali.
This all started about 6 years ago when I broke my back in a skate boarding wipeout.
It wasnít a major break. It was just a compression fracture of the T-7.
That healed in about 6 months and I was still in pain but it was tolerable.
About a year later I started to feel a shooting pain on the back of my leg that went from my hip down to my toes.
I just dealt with the pain.
After two years of just dealing with the pain I started to get Dr. Visits and all the Dr's would do is take an X-Ray and say there was nothing wrong and that I was fine and to take some Tylenol.
I went to probably 10 different Dr's and then one day when the pain in my hip and leg was so bad that i was walking down the stairs of my apartment and my leg just gave out.
Luckily my laptop was in my backpack and it shielded my back from the stairs but I felt like that was the last straw so I went to the ER that treated me for the compression fracture.
The ER Doc was the first one to listen and really believe that my pain was real and I wasnít some pill popper looking to get Vicodin.
He scheduled me an MRI and a referral to physical medicine.
I got real lucky and got a Physical medicine Doc that was great and he did the MRI and I finally got diagnosed.
The diagnosis is Degenerative disk disease, bulging of some of the disks, degeneration of some of the disks, Mild Stenosis, Arthritis of the facet joints, sciatica, and now the latest rheumatoid Arthritis, and Ankylosis Spondylosis.
I was just released from Pain Management back to the care of my Primary Care Doctor.
He will be filling my prescriptions from now on and I am not a candidate for surgery.
I was told by the Physical Medicine Doc that I have the back of a 70 year old at 26. I am now 30.
It totally bummed me out.
I am currently on 80mg of Oxycontin 3x daily, 15mg of Morphine 6x daily, and a arthritis medication that I forget the name of but I take two 75mg a day of that.
Itís been a long hard road.
So thatís my story.
First of all I have Neurofibromatosis Type 1, this has impacted all aspects of my life. I have been seeing doctors since I was two in Salt Lake City. It used to be that the only pain I experienced occured when the plexiform neurofibroma that I have in my back was hit. This still occurs although not as frequently.
When I was 12 I developed a neurofibroma on my left shoulder, this cause a lot of pain, so I had the tumor removed. I have a large scar there now, but that is ok in my book. The next few years went by easily until I was entering my sophmore year of high school.
I was on the swim team and the first day of practice I discovered that I could not kick with my right leg it the water. It drug behind me like a dead weight. I brushed it off, my sister however FORCED me to call my mother and go have and MRI, the IMMEDIATELY sent me back to Salt Lake to see the neurosurgeon. There I got the worst news of my life, if i didn't have the surgury within two months, it was unlikely that I would walk again. I had a lamonectomy at my L2 and they striped tumors off my spinal cord and removed a chuck of spine. I was in the hospital for a week barely able to breathe due to pain. I went through 2 years of physical therepy.
After the surgury, everything seemed fine From about 2 months post op to about 7 months post op.
Then I started getting pain again... excruciating pain that inhibited me from sleeping and from my favorite activities like skiing and swimming. I went back to see the neurosurgeon and was told that they couldn't do anything for me. They sent me to pain management, I was in pain management for the next few years. They experimented with drugs... one made half my hair fall out and it has never returned. They settled on 'Neurontin' and I was taking 800 mg three times a day my senior year on high school. I went off to college still in pain. Wheile in school, I was barely ever able to attend class due to pain. The Dr.s upped the Neurontin to 1200 mg three times a day, also experimenting with oxycontin, oxycodone, methadone and morphine. The methadone nearly killed me. I was getting addicted to the pain meds. So I flushed them down a toilet.
Finally I decided that something had to be done or I would no longer be able to go to school. I met a WONDERFUL doctor, he skipped his lunch hour just to meet with me. He suggested a neurostimulator opperation and I gladly accepted. One month later I had the Neurostimulator implanted and after dealing with the surgery pains, I was pain free! I have finally gotten off all pain meds, and have started to ski again.
For all of you out there, God bless! I know what you are going through.
And now after thinking about dropping out of school, I am applying to medical school with two Bachelor's degees. There IS alway hope, you just need to find a doctor who believes in something other than medicatios!
I hope I'm doing this right. I survived a trama car accident in 05. My feet/heels were broken, my right arm was so bad that they have a long metal plate in my arm and hand. My feet are the hardest thing to deal with. I also have an S1 injury in my back that is awful. I wasn't expected to live. After a month in ICU in shock trauma, they put in a trach tube and they transfered me to a nursing home. As i was unable to walk and breath on my own. The nursing home weaned my off the ventilator and slowly i began to heal. It's an ongong process still. Thus my intro to pain management. I was on methadone but it caused my bowels to lock. I had to go into the hospital again and after 3 days they gave me mag. citrate. I was taking laxative daily. My doc took me off meth and gave me oxycontin. I was using percocet too. The oxycontin doesn't seem to be working well. It's generic and I was wondering if anyone knew about it. Does anyone know or experience the severe constipation? This looks like a great board!
Thanks for listening
I am new here and would also like to tell my story. I am grandmother of 10 beautiful babies and in horrific pain and need to get relief and not sleepy all the time. It actually started when I was 4 and fell from a second-story balcony. I remember not being able to even feel my legs or stand up. I (and my younger twin sisters) were denied medical care by our mother, so I never saw a doctor. Just got punished because I could not stand up and walk. While in 5th grade, my back went "out" for the first time, not believed by my mother, of course. My teacher would meet me at the bottom of the stairs (grew up in L.A., CA) and help me up. Not long after one of my twin sisters and I were riding a horse on a blacktop road in rural N. CA. A dog came up and attacking the horse, we went down, head first onto the road. I was out all day, and when I started to regain consciousness, could hear my aunt beg my mom to take us to the hospital. Again, that did not happen. So, more injuries not treated. When I was 28 I found out my cartilage had died in my ankles, which explained why I had locking and pain there my entire life. I had many tail bone injuries leading to fracture at age 45 (helped by the family dog). I have osteoarthritis of the spine since a young age, fibromyalgia, tendonitis, brusitis, sciatica, spinal stenosis. My first husband broke the toilet tank with my back in 1979, and I landed in hospital for 10 days and lots of chiropractor visits after physical therapy. Then, June 3, 2000 I was run over by my own car by my 2 yr-old grandson. Well, that just did me in completely. My spine was moved to the side and now presses on that fractured tailbone. L3, L4, L5 were terrible. I am now waiting for decompression surgery for they finally just collapsed and have now put me in horrific pain. I have been on Oxycontin with Percocet for breakthrough, then a couple years ago I was switched to methadone (not enough and I did not like falling asleep all the time). Now I am on Opana ER, but only 10 mg twice a day. I use Opana IR 5mg for breakthrough pain. I am still in so much pain I feel like I'm going to go crazy. Opana does not make you tired at all, but it does make me feel a little strange. Could be the 175 mg Lyrica I take twice a day which is to help the nerve pain that has become so bad I feel like I could crawl out of my skin. I wonder if Opana at any strength is going to work. My PM told me it is new and twice as strong as Oxycontin. But not at this dose. He is seeing me 2x month (we just started 5 wks ago so I am sure he is just going slow to see how I react to Opana ER). But, at this very moment, I feel like I am going crazy, can't sleep and have 3 methadone left and have contemplated taking them too. That is my story and if anyone has any suggestions I would be happy to see them.
Last edited by victoria1951; 08-25-2007 at 11:47 PM.
Reason: WANT TO EDIT TITLE...I DID NOT GIVE IT ONE
I am 41 years old and have been suffering from chronic pain now for 3 years.I was diagnosed with fm/cfs 5 years ago but never had a major flare like I did 3 years ago.
I am currently suffering from bursitis in both hips,the fm pain,dysautonomia and raynaud's syndrome.
My reheumy. does not give out narcotic type pain meds. so I take over the counter pain meds. more often than I should.
Bursitis is my most recent problem.I did recieve a cortisone/pain numbing shot this week.The numbing medicine helped right away but the pain is back and really affecting my everyday life more than I can hardly bare.
I am a stay at home mom.I take care of my special needs daughter that is 16.She has been sick her whole life.Just recently had a pituitary tumor removed.Fortunately she is doing beetter and is on her way to be her old self.
I have had very little support since I started having symptoms atleast 15 years ago.But just within the last 2 years my husband has been my biggest support and takes good care of me.We have been married 20 years.Been tough on us both but we love each other very much and through all that we have been through with my daughter's illnesses and mine we continue to be the best of friends.
My biggest concern that I have lupus.All tests come back negative but I have had some labs to whow low white count and I have many symptoms that point to lupus.I get checked for lupus and ra every 6 months.I am also very concerned about my recent diagnoses of dysautonomia.I will be seeing a specialist in the next 6 months.This has become a serious issue with me.It has affected my life greatly.I have days I can't drive,I feel lightheaded often and outside of myself and I fear that my condition is getting worse.
I am a pretty upbest person.I try to get a laugh out of anything.I do suffer from great depressiona and at times it is worse than the pain.I will take pain over depression anyday.But with chronic pain there is always a degree of depression.I mourn the life I use to have and the life that I will have to stuggle with from here on out.I fear the future and what pain lies ahead.I pray for a cure and I pray for answers.Both I except I may never get but I continue to look for help and support.Can never have too much support.
I look to be an example of strength and determination to my family.And most importantly Faith in God.
I will take it an hour at a time, but I will make it.
I feel sorry for you. But I am glad you are still able to tell others your pains and at least living life . That is the best thing you can do. To share what you've gone through so that others can see that they aren't the only ones suffering.
Our stories help others. I wanted to write to you about your feet problems. I have found it very helpful to take warm baths. I have scoliosis so bad I had to have surgry. I had the back brace and then the Herington Rod placed in my back because it was an S shapped back. From then Since then . I have found an amazing product. I used to suffer from Severe knee and back pains. I have gone to a rehab instructer and I now do 30 minute exercises ( Stationary bike, Tredmill, and weighlifting). I have to go 3 days a week at 1 hr a day. I watch t.v. while doing the exercises to make it fun.
I also found a prothesis that is the MOST amazing product. I am telling my friends about it because of the way it make me feel.
However. I wanted to let you know that with will power there are ways that you can get help for your pain. I just think you are amazing after all you've gone through and I'm sorry for your childhood.
Have a most wonderful day
Last edited by moderator2; 09-18-2007 at 06:52 AM.
Reason: read the rules instead of commenting about them
Hi im kind of new with this thing but i ran across it and i have a few questions. My case is quite odd at that matter. Ill try and sum it up
Im only 19 years old. Ive been having this on going sever stomach pain since i was 16. Ive had multiple surgeries , procedures, every test in the book and no final conclusion. Ive been on narcotics for quite some time now, everyday. I started at smaller things as Lortabs , Tylenol 3, things like that and ive escalated all the way up to 3x daily Dilaudid and Percocete 10s as needed. Im currently on a lot of nausea medicine obviously, and sleep medication.
I know theres a big worry with addiction and thats what im worried about as well. Its been almost 3 years and we still have no came to conclusion on my problem. Ive had pancreatitis 2 times but , when i was tested a couple times int he past few months for it, there was no signs of it.
I guess what im getting to is, i feel as if i might be coming down to an addiction problem more so than a medical problem. I know my pain was real and i ahve test to back it up, but now since all my test are coming back negative and my procedures as well im thinking im having trouble deciding wether my pain is addiction pain or just actual pain. Im not sure if that makes sense or not but, pretty much im confused as if all the pain killers imt aking is helping me or making me worse. Obviously pain pills are no good to you in any way but im not sure how to go about finding out if im still having problems or im just simply come down to addiction. =/
Anterior Cervical Fusion C2-5 (Recovery) Need Advice
Hi my names Aaron. I'm 21 years old and have been struggling with neck and back pain since around middle school. I recently discovered a year ago that I have a congenital fusion from C2-3. Gradually my neck had been getting more and more unstable and shifted forward causing great pain and strain of the muscles. Fed up with the pain I finally schedualed an MRI and they noticed Osteoarthritis and narrowing of the spinal canal. I was referred to Dr. Nguyen of the NH NeuroSpine Institute and they recommended a fusion that would connect with my congenital one. They said they would do an Anterior cervical fusion connecting my congenital fusion of C2-3 to C-5 correcting the curve of my neck and making it more stable. Well after alot of console from coworkers and family I decided to get the surgery. Since the 14th of this month I've been at home recovering, the operation was said to be very successful and after 1 night at the hospital I was released. The pain is very hard to deal with. I was given Vicodin and a Muscle Relaxer which I take every 6 hours. I am very stiff and still very uncomfortable finding it hard to sleep I am worried about the mobility I will have left in my neck when I have fully recovered. But I am trying to stay positive and get plenty of rest. IF ANYBODY can help me with some reassurance and some advice as to the aftermath of this type of fusion. Please Reply ASAP! thank you. I look forward to reading your replies. -Aaron Nelson