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Posted 7/15/2010 6:45 AM (GMT 0)
 

What is your Chronic Pain Story?

    As we all know, when we first join, we start our own "introduction". We do this so we can welcome each person and get to know them on a more personal level. But, what about those of you who joined a month ago? 6months or even years ago? How do we bring our past and our present together?

 

    This thread is for just that. Bringing us all closer together. If you have just joined, or maybe joined a few months or years ago.. please, share your story with us. How you come to be a chronic pain patient. Your struggles along the way. What you are doing to combat the pain. Share with us, if you can, how it all began.

 

     Lets re-introduce ourselves, so that we can bring our past and present members of the Chronic Pain Support Group closer together.

 
Posted 7/15/2010 2:23 PM (GMT 0)
Getting to know me? Well I am married (twice now) and the father of 2 boys ages 20 and 4 1/2 with only the preschooler still at home. I have a 12 year old mutt, a 1 1/2 year old pure black lab, and a 1 1/2 year old orange tabby cat. We call our house/property "Critter Corner". We all love to camp and go as often as we can and likewise we named our camper the "Critter Cabin". My wife works full time and also is going to school full time trying to get her nursing degree. If all goes right she will have her BSN in 2 years. Me, I am a full time stay at home Dad and have been since my 4 year old was 6 weeks old. Before that I drove semi trucks cross country for 8 or 9 years. I have also worked as an assistant manager at Wal Mart and spent several years working as a living skill and behavior modification specialist working with the developmentally disabled (old term mentally retarded), which was by far my most personally rewarding job I ever had, but sadly thanks to getting involved with an agency who did not care about its employees I suffered a major burnout.

My journey into the "wonderful word of CP" (note major sarcasm) began about 4 years ago. It started with complications from diabetes (peripheral nueropathy) and a short time later I started having major pains in my back and was dx'd with 2 herniated discs (L5/S1), severe spinal stenosis, and severe spinal arthritis. For the past couple of years I have had nothing but problems with doctors. The PCP I had been going to for over 10 years stopped seeing me because I missed too many appointments. I had simply forgotten about them. I was having memory problems due to one of my medications at that time but he refused to listen to it. My current PCP has a major listening problem and apparently does not keep good notes because she changes "the plan" every time I turn around. I am currently doing my best to make it until the 20th of this month so I can get some more pain meds. I had slept through my last appointment and as soon as I realized it started trying to reschedule only to get the run around which I told my PCP about but she didn't seem to care and/or believe me.

And that is where I am at today.
Posted 7/15/2010 5:00 PM (GMT 0)

All about me....Well, I'm 46 years age.  Married three times (eeeeek!!!) and as the saying goes..."third times a charm." well, it was.  My husband and I have been blissfully married for almost 14 years (this next Sept).  We live in south central KS and have been here about 3 years now.  Moved from WY where I was born and raised.  Hubby on the other hand is a KS grown boy!  We moved her to care for his mom and dad who are very sick.  His mom has been diaganoised with Alzhiemers desease and is slowly losing her mind.  Sad, very sad!  His dad has COPD and they are both in their mid 70s.

We have three labrador retrievers, one of each color; Jazzmine is the oldest (12) and is a chocolate color, Shadow is a black lab and the middle child (11) and Remington (10) is the baby and he is a goofball!  They have filled our lives with so much happiness that I cannot see myself without them, but since they are getting up there in age, I am actually looking at the reality of their mortality.

How I got to the CP part of my life....I was a Certified Nurse Aide at a local nursing home in WY for almost one year when one morning I went to get my residents up for breakfast.  I was on my last resident when the woman slipped from my arms and instead of her falling to the floor I twisted (apprently just right) my back and caused 3 levels (L3-S1) to herinate.  Went through tons of tests, shots, injections and medication in the first two months and since none worked I was forced to look at the real picture that I was about to meet a situation that I was not prepared for....unemployment!

In Dec. of 2000 I underwent a two level fusion and it seemed to do well for the first two years.  Minimal pain and felt pretty good.  Went to replant my strawberry patch and suddenly had seering pain down the left and right legs.  Went back in and discovered that L-3 L-4 was now herniated.  Underwent another fusion in 2002.  But within 6 months I was reliving the exact same pain that I had before the surgery and the doctor discovered that the fusion did not take so they went in frontal and replaced the hardware and placed a plate at the front of my spine to help hold it.

So....ten years later....here I am!

Hugs

Scarred

Posted 7/16/2010 4:10 AM (GMT 0)
 Well... I am currently 30 years old. I am married and have two beautiful little bumblebees. I live in the high altitude deserts of NM. In case you are wondering the sunsets out here in desert are unlike any I have ever seen. Purple, red, dark orange, just georgous. Western living has its own pace and is a world all its own.

    My pain began a little over two years ago....

    A few years ago I kept getting a persistent "burning / itching" sensation at the bottom of my back. It would get very inflamed and swollen and make me sick to my stomach from the pain. I went to my family doctor. He ordered an X ray and gave me some medicine and said he would call with results. He did call later in the week, but said everything looked fine, but to try to take it easy and let the muscle spasm pass.

     The "Burning / itching" never did pass. It slowly got worse and worse, but I didn't bother anyone because if everything was fine... then I was just being a big baby. Besides, I am not a chicken and I should be able to handle a little back pain. ...So the inflammation, burning, itching got worse and worse through the summer until one day it became so intense I passed out while clearing weeds in the back yard. I woke up with ants on me and rosie crying. When I looked at my watch it wasn't more than 3-4 mins or so. But, I decided maybe I would see my family doctor again because it was getting really bad. I was getting very sick to my stomach from the pain.

     When I see him, he is concerned. He thinks that if it is enough to truly "hurt" me, then he needs many tests run. That very day I am given full x rays and blood work up. During my X rays something weird happens. The techs are fighting. I have to sit there longer while they make phone calls. It was a long time because it was freezing in there. By the time they come back, they say they need more X rays. At some point someone goes to get the kidds crayons and coloring books and juice to keep them occupied. Then they do all the x rays they needed.

     I go home and there are messages on my voice mail service. Asking if I could please make it in to town that night. That the wing of the hospital would "look" closed but to go behind the desks and take a left. So... I take the hour long trip to town. When I get there a nurse is sitting in the waiting room and he takes me back.

     I am greeted by a lot of nurses and a couple of doctors that I will come to know as "spine specialists". (They have extra training in spinal deformities). They are all looking at an x rays on a lighted wall. They ask me to walk, to bend over, to stand on one foot, and I stumble and fall... Then they bring over a plastic spine and some charts. I was given an explination of what scoliosis is. They say that it is "mild" but that it is unusual because I had x rays done earlier that year and those xrays are normal. They tell me that they do not understand how I developed a full "levoscoliosis" in 3 months. That they are sorry but they want to make me as comfortable as possible while they begin a battery of testing. That I need to begin cortisteroid treatments. If I could please sign a paper giving them the ability to share my medical information so they can consult other doctors.

      So, I .. umm... well, I threw a temper tantum. Told them to ** ******* themselves and they were the doctors. They needed to fix it. Fix it now *********. Screamed at the top of my lungs till I was out of breath. It felt like they had stolen my heart somehow and I stormed off....Not the most mature response in the world........

     ....so through that summer, fall, winter of 2008 I was tested and x rayed countless time. They are frustraited and running out of tests. They are concerned because apparently the majority of scoliosis degree progresses at less than 1% per year. Yet here I am progressing a couple of degrees every few months.

     That christmas I begin to not feel very good. Hips hurt a lot. I tell myself it is no big deal, I will see my doctor after the holiday is over. I have guests from out of town, so the house is packed. Every christmas I have house guests from florida for a full month and half. They like the snow. But, something strange happens .....I begin to get tired. Very fatigued. I began little vomiting sessions every time I have to do non stop physical work. The pain becomes very intense and at some point I began to run a fever. So a month later when everyone has gone home and school starts again.... little rosie and I head down to the doctor and I tell him what is going on. He orders blood, X rays and MRIs the same day. My husband takes off from work to help with the girls.

     I got calls the next morning to please come in. I go in they tell me I have progressed and they would like to do a much larger area of steroids. Increase and add in more pain medicine. At that point, they are just saying the same thing over and over as far as I am concerned. Might as well be in a Peanuts cartoon with the doctor saying "wha wha wha wo waa haa ha". In the back ground like the Peanuts school teacher did.

    The next month is my vacation to Jamez Springs and I hope that will take my mind off things. So in March 2009 I go on vacation. While I am there I bite into some sausage and 2 teeth crumble out of my mouth. I didn't know it then, but over the next two months all but 6 of my teeth will eventually crumble out of my mouth. Until I have nothing left.

     I am beginning to loose my vision as well. I already had a congenetial cataract removed a long time ago when I was twenty, so I went back to my eye surgeon for help and tells me I have rare build up on my synthetic lense and he needs to do surgery...

     In June of 2009 I am in the last stages of therapy and my psychologist suggests I join a support group. I joined scoliosis association first, but soon find out that it was mostly children and their parents.... who had a lot to say. They were constantly fighting over there.  Not exactly the place for me. So I searched for a different support group.

      When I first joined healing well I saw so many people with "scoliosis" in their signatures and I stayed on as a member. It is a good thing I did because I meet many people and made a lot of friends. It changes my life for the better.

    

     Also in June 2009 I begin to limp, my hip starts to tilt high and higher. I also begin to get shorter. At some point, something to do with my endocrine system comes back abnormal and I have to see a endocrinologist. He has me do a lot of tests and finds that though my parathyroid does "work".. it is just absorbing at a low rate 0.0025. Also, I apparently have Hypoparathyroidism. He thinks that problem is inherited thou. Especially since I was born with a cataract. 

      He begins to treat me. The boneloss stops (the parathyoird absorption under control). We being to treat the hypoparathyroidism (cataracts, tetany, parathesis et al)and all of the problems from that stop as well. Then, finally, I am cleared to have oral reconstruction surgery in fall 2009. So I have eye surgeries, oral reconstruction surgery and cortisteroid series all in the same 2 weeks...well I tried to, one got pushed back because of "risk of infection". Also, I think they thought I was crazy for wanting to do them all in same two weeks?.. So, had to wait extra week for the cortisteroids that time.

     At some point I began to get "spots" like pepper throughout my vision in BOTH eyes. Eye surgeon is confused and says that the tissue of my eyes is softening and the cells on the lenses is stripping. There is no fix for this. Only temporary. Hes sorry he doesn't know why.   

    By christmas 2009 I want them all to leave me the heck alone and tell them as much. They all understand. I enjoy my holiday without doctors. During my "holiday" I get a big jump in pain, but am determined to "tuff it out".

     By the end of feburary of 2010 the doctors resume. Only when we resume I find out all of my doctors have changed and the transitions are all already done. All I have to do is "meet" the new ones. No choice in the matter, nothing. It is what it is. There isnt any laspses in my care atall, it was all done very smoothly.

     At some point hearing loss began. Something called "tinnitus" begins aswell. But it is a fancy word for "ringing in the ears". No known cause of that either.

      I get bone scanns in March 2010 that show the treatment of the parathyroid absorption is working and I have good bone density but that I am measured at 5ft 5in (was 5ft 8.5in). The tetany, parathesis, et al is under control from the hypoparathyroidism treatment aswell. They are small but hopefull victories.

  

      Also in March 2010, I get more xrays that show my levoscoliosis is larger and increased in the degrees, it now reaches from T10- SI. There is a secondary dextroscoliosis aswell (I had felt the "deep itching" between my shoulders for a long time at that point) from T4- T9 . There are degenerative changes in my cervicle area and it is "possible" that a "tilt" will progress there. They begin to seek genetic panels at that point. Other smaller concernes such as sclerosis, disc space, bone on bone, arthritic areas, facet arthropy (allows for the rotation on the vericle axis)in the x ray too but minor in comparision to my overall progressive deformity. But, I am not told about any of it, until I am given a report later in the month.

     At the end of the month I am given a full report of true severity of ALL my conditions. It is much worse than I was led to believe. I cry and am very angry for about a week. I know my doctors and my husband were trying to protect me. I know I had A LOT of surgeries during that time.. I understand that, I really do. But, I feel betrayed. That was a very hard week for the "inside me". I felt very lost.

      Now we come to July 2010. My endocrine problems are still under control thankfully.  My vision is troubling. I need to get my eye lenses "asperated". The ENT wants to do surgery on my nose. My hearing loss and tinnitus is increasing. I have lost another inch off my height (5ft 4in)and my right hip is rotating towards the rear about 2inches.  Walking is very hard right now. The pain has me on the verge of vomiting for the better part of my days. The pain is out of control and I know I should get more X rays, I am just not in a hurry. I want enjoy my time with my bumblebees during summer break. I am also scared of what will happen.

     

     ......so, that is my pain story. I was just telling a friend of mine the other day that a few years ago my biggest medical problems consisted of yearly vaccinations and acne treatments.....

      .. Common you guys, dont make us feel silly standing out here all by ourselves. Come share your story too!

Posted 7/16/2010 7:42 PM (GMT 0)
I'm 40 years old and have been married for almost 21 years to a wonderful and patient man. I have two children - my son is 18 and just recently graduated high school and my daughter is 14.

My journey started about 18 years ago. At the age of 22 I was diagnosed with Ulcerative Colitis which is an auto-immune disease - my immune system is attacking my large intestine. Along with Uc comes other chronic health issues including arthritis and/or eye and skin complications.

I also got into several accidents - all of which I was rear ended and I was at a standstill (red light, stop sign etc). In one of the accidents, I got severe whiplash and the ball got rolling from there. I have bulging discs in my neck but I didn't know that until I started getting nerve pain issues in my hands. The bulging discs, I believe is from the accidents. After getting several epidural injections, my neck is now back to somewhat normal. I still have bad days but for the most part it feels much better.

I also just found out recently that my back pain was due to sacroiilitis and scoliosis. I had no clue my spine was twisted out of whack until a chiro took xrays. It explains so much of my issues and since seeing the chiro, I can now function like a normal person again (also in conjuction with Celebrex and Tylonel Arthritis that is!).

My hands are another story, my pain started in my teens. No doc could find anything wrong with them but they just hurt. I've had numerous tests but nothing ever showed up. Now that I'm older and things have been going like this for years, my hand pain issues have started to show up in testing. I have arthritis in my hands and fingers, tendonitis in my thumbs, trigger finger in several of my fingers. I also have Raynaud's that affect primarily my hands. I can't go in temperatures below 60 degrees or I lose feeling in my fingers. And when they warm up from being numb it feels like I dipped my hands in a vat of boiling oil, so I try not to let them get cold! lol

So in a nutshell, I have arthritis in my right hip, both knees, upper back, fingers, hands, left shoulder and the beginning of it in my neck - these are my main issues at the moment along with my Uc but I think that is enough!
Posted 7/17/2010 3:07 AM (GMT 0)
 

After reading the few that are posted here...I find my self teary eyed. This really puts a face on the people we meet here and their journeys. Thanks Dani for mentioning to do this.  Here goes!

My name is Heather June and I'm 42 years old. My husband calls me Juney. Kinda funny that he picked up on that. Occasionally he'll sing through the house..., "Juney May, Juney May" he's weird like that:) We've been married 23 years and have 2 adult daughters. I'm a Florist by trade but have also dabbled in non-profits (Habitat for Humanity) and have taught pre-school off and on. Now I'm NOT working out of the house. Was working full-time plus 4 years ago, then part-time, then to part-time occasionally, now NOT working out of the house. I do make Banners for my Church. It helps me stay busy with my hands and mind. Some days my hands hurt though.

All thoughtout my life I had IBS problems. I thought that it was normal because so did my Mom. I always figured it was normal to have "bouts" of D for a couple weeks and then go back to constipation.

At age 17 I hurt my back just moving things in my bedroom. I remember being so sore that I couldn't walk or go to school. Stayed off my feet for awhile and was good to go.

Got married at 19 and was pregnant shortly after....very shortly! The first 5 months of pregnancy I lost 25 pounds. I got a staff infection and lost so much weight that they put me on high risk. Then after my fifth month of pregnancy Dr.'s said I had developed toxemia and had to stay off my feet completley until full term.  Had to quit my job and rely on husband's income. In a matter of 4 months I gained 75 pounds and ended up having a C-section to a baby girl who weighed 10 pounds!!! After my C-section it took months to heal. When she was 5 months old I lifted her wrong and pulled my back out and had to go in an ambulance to the hospital where they said I pulled my hip muscle. So they shot me up with demrol and off I went. I was amazed at how fast I was able to move after that shot!

Had my second daughter 3 years later. Dr. said she weighed 11pounds...but only weighed 9.3 but was 22 3/4 inches long! This pregnancy was a dream compared to my first. I was older and tried to stay more fit and walk more. Didn't listen to the Dr.'s quite as much. Gained 45 pounds and was much stronger. Ended up having another C-section but healed up much better.

Then at 26 years old my back just progressivley got worse. The pain was so bad my leg started dragging and I was in so much pain I just got mean!!! It hurt so bad that I couldn't hold my kids or participate in life with them. I was working full time and trying to lift my bad leg on a shelf as I worked. As long as my hands kept going I was good...Finally ended up having an MRI and they said I had herniated L-4, L-5. Same place my mother had problems so I asked the Dr. who worked on her to do my surgery. They made me do 5 months of physical therapy first (which i think made it worse) and wait 6 months until surgery.

Had the surgery in Jan 97 and I'll never forget what the Dr. said when I went into the surgery room. He asked if I was scared. I said "YES!!!" He said , "Good you should be, this is serious" He also told me this WOULDN'T be my last back surgery. What a thing to say. Not much bed side manner but a great surgeon! I knew as soon as I woke up that it helped. Dr.also found S-1 was herniated but said he wouldn't do anything with that because it had to hold everything else up. It took a good year for me to really be able to walk again. Now, 12 years later my kids still laugh at me on the trampoline because of my nerve damage. I can't jump very well. My back still bothers me if I'm not careful. I feel like arthritus has crept it's ugly head in. My back is still very touchy....I will probably end up having fusion...but I'm putting it off as long as possible!!!

Then, at 30 had emergency gull bladder sugery. Long story...it hurt and it's out! 

At 33 had a nervous breakdown. I had been caring for my parents (both ill) and ended up loosing both of them within 2 year period. On top of this I was caring for a brother who has MS. Also, caring for my girls with a husband who traveled 4 days out of 6 . It was just tooo much and I had to see a therapist for a year who dx me with PTSD. I was raped as a teen and well....there was alot I needed to get out.  I learned more about myself in that year than any other. Out of all my surgery's Mental pain is still the worse! I would never wish PTSD on anybody ever!!

Then when I turned 35 I started really having issued with my period. Living in Michigan at the time most Dr.'s there never listened when I told them I was just having an awful time and wanted a hysterectomy. Moved to Minnesota in 2003 due to husband job transfer.  I saw a Gyno right away and they agreed I wasn't living. I bleed all but 1 week out of the month. So, eneded up having a hysterectomy at 35.  I was really scared that it would screw up my back but did it anyway for some relief. After that surgery Dr. said I had endo really bad! Anyway, I kept my ovaries so I'm still a girl....lol and we'll see if that's a mistake I didn't heal well after surgery though. Got really really sick 8 weeks out and ran a fever.  Went to ER. Dr said, I needed my appendix out. 15 minutes later was wheeled in to get my appendix out. I'm thinking....can I just have a zipper please!!! After "that" surgery woke up and the Dr. said my appendix was fine...but he thought I had Crohns. WHAT????

My husband and I had NO idea what Crohns was. They set me up for a colonosopy with a GI and home I went. Following week met with the GI for colonoscopy test and it went fine! Got a clean bill of health. yea!  I never looked up Crohns on the internet because my RN sister said don't. She said it would scare me. SO, I didn't!

Then for the next 6-8 months had so much nausea and stomach pain. Upper stomach pain. Went to my regular MD and she said possibly an ulcer. She gave me pills to sooth my stomach. I couldn't eat...started loosing weight. The next few months I just got weaker and weaker. Bouts of constipation and D. Lost close to 40 pounds when I got a complete blockage. I was at church with my daughter and I knew something was really really wrong!  My stomach became super extended and I was super nauseated. My daughter was 16 and I looked at her and said she was gonna have to find a ride home and I drove to the E.R.

Dr. found the bloackage! I was put on megga steroid iv. I cried on the end of the bed so hard when he told me.One more thing..why didn't my body like me???? Dr. said that I had actually blown a hole in my small intestines and it had tried to attach itself to another part of my intestine. GI. Dr. never found it during the colonoscopy because insurance only covers LARGE INTESTINES!!! during a colonsocopy test!!!!!! UGGGHHH!!!!

So at 37 I had my first re-section. They removed 12 inches of the small intestines. 7 hours after my surgery my re-section CAME APART! I had passed out on the floor due to bleeding.  This little nurse found me and picked me up and I'm not lite! I couldn't see anything or move from being weak. I could hear everything though. People were screaming in a whisper code red, or blue or some color????

My hemoglobin went from 13 to 4 in a matter of a few hours. Went back for surgery that night and they took 5 more inches off my small intestines. Spent a few days in ICU with and NG tube in...and was quarantined  to my bed for 72 hours without moving.

Sad thing is my Surgeon knew I was bleeding more than usual and came to my room concered. He wouldn't listen to how I was feeling when I said I felt like something was wrong. Lessoned learned....I moved here and didn't ask about General Surgeons. I should have ask more questions about who was good and not good. Word of mouth is all we have! He was also about 28ish. inexperienced!

According to my GI I'm in remission. Honestly, there are days when I feel horrible! and days that I can actually eat. I'm missing valuves that I should have which makes me have much much urgency!!! My joints ache and I'm very fatigued daily.

I have had 2 hernia surgery's since this re-section ordeal!  Just this May I had a pig mesh replaced that had failed in 2 places. I've had 13 surgery's all together. Just another day in the park..right? I'm o.k. with just about any test/surgery now... as long as I'm out!

Thanks for letting me tell my story!

I guess the moral of my story is....I'm a lemon of a car!!!! haha

Just hoping to make everyday memberable! Life is short and my quality is so much more important than my quantity:)

 

Posted 7/17/2010 9:04 AM (GMT 0)
My name is Carmen, I'm 27 years old. Never married, have 2 kids, an 8 year old daughter and a 10 year old son. I have many animals, 5 guinea pigs named Rosey, Snowball, and Snowball's 3 babies, Boggart, Taco, and Princess who will be a year old on July 20th (when we bought her, we had no idea she was pregnant, and we couldn't part with the babies), then I have a pure black male cat, have no idea how old he is, but I'm guessing around 2 years old, his name is Blacky. Then my favorite pet is my ShihTzu mixed named Brownie, he's 8 months old, and some people think we're connected at the hip, because wherever I go, he goes too!! He's acually NEVER been left alone at home by himself, I either take him with me or find a petsitter for him.

My pain started when I Was VERY young, actually as long as I can remember....I would always be having severe stomach pain, it really made school life hard. When I was 14 years old, I started getting these severe chest-type pains that would last anywhere from 15 minutes to 6 hours..my parents took me to many doctors, including my GP, ERs, urgent cares, and nobody beleive that my pain was THAT bad, they where convinced that I was making it up because my parents had just gotten seperated around the same time these chest-type pains had started. Or they thought I had food allergies, so I was basically eating what I called hamster food.

Well one day, a year later after these pains had started, I went into my GP with my mom, and the doctor was out on medical leave so I saw the doctor that was covering for him, and she order an ultrasound (why no other doctor did this earlier is beyond me) and they found gallstones. So a week later I had my gallbladder removed at the age of 15. Then a week after surgery the pain came back, so we went back to the surgeon and he was convinced once again...it was in my head....Also all these pains have caused my body to get fibromyalgia.

Then when I was 17, one night I got very very ill and went to the ER, and they found out I was having pancreatitas. I went in the see a GI doctor who did a ERCP  right away, who found out that I have a genetic disorder called pancreatic divisum (where the pancreas doesnt form all the way before I was born), so I always get pancreatitas, which I hear is one of the most painful things to have...(but of course compared to other pains I've had, this is severe, but it's "diffrent" from other pains I've had, so I really can't compare)

Then one day when I lived in my father's basement, my son, who was a baby at the time was crying and I slipped down the stairs, which is carpet covered, but is cement underneigth, I ended up doing something bad to my back, and I remember laying their at the bottom of the stairs trying to catch my breath (the pain litterally took my breath away), but for some reason I decided not to see a doctor. I suffered for a good year with that pain, without a diagnosis or any treatment, I just dealt with it.

Then about 5 years ago, I had a car rear end me on the freeway, there was traffic and they where doing road work on the freeway that was taking years to do, and the lanes where down to 2 instead of 4 and I guess people where in a hurry to get home because people where driving like crazy nuts, and all of a sudden, for probably no good reason, the cars in front of me came to a sudden stop, and I barely missed rearending the car in front of me, but I looked up in the rearview mirror to see a lady not paying attention and hit me going 50mph.

Then 2 months later I accidentally fell asleep while driving and rolled my car down a hill on the same freeway, so I've really ruined my back even more BIG time, but the pain is all in my lower back and down my legs.

Then I also started suffering from severe migraines after I had my daughter when I was 18, and the GI doctor did all he could for my pancreas, so I was sent to a pain doctor and started on pain medication when I was 19 years old for the chronic pancreatitas, the migraines, and the back bain, and have been taking some kind of pain medication since then. So yes, there is doctors out there willing to treat "young" people with chronic pain, they're hard to find, but they are out there...

The welfare office had me sign up for SSI when I was 19 years old, and I got approved when I was 22 years old for the chronic pancreatitas and migraines.

And now a few weeks ago, my new GP told me she thinks I may have RA, so she's trying to find me a Rheumy, which is almost impossible when your on state insurance. Which is a whole other issue, the state doesnt like to pay for ANYTHING, I had to fight with them just to get a GP and to pay for 2 medications, then I pay $170 out of pocket for the rest of my meds, it just makes it so hard to have so many medical issues and the state thinks their's nothing that ibprofen can't take care of.

So the moral of my story is......DONT drink the water if you live next to a place that use to make nuclear bombs and is full of nuclear waste like I do, drink bottled water!!!!! Or your body will start getting ill at a very young age!!! My daughter is getting those stomach pains like I did when I was her age, it scares me. I don't want her to suffer like I did....

-kitty

Posted 7/17/2010 12:16 PM (GMT 0)
I can really emphasize with everyone here who is suffering. It's an awful thing to go thru constant pain, as well as having to try to describe it to people who just don't "get it". Many of you are probably like me, in that to look at you, there is nothing obvious that jumps out and says you're in pain - no physical deformity, no cast, no stitches.

My pain story goes back many years. I remember suffering widespread body pain from the age of 15 on - I'm 48 now. Mostly it was mild for many years, but enough that I knew it wasn't normal. I ached all the time, but at the time, I was living a pretty rough lifestyle (drinking, drugs, hitchhiking around the country, doing crazy things...but that's another post!) and it just wasn't at the forefront of my mind. I finally settled down, had kids, entered and left a couple of relationships, and then met my (now) wonderful husband.

I've had my share of surgeries over my life, including appendix, uterus, then stomach surgery in 2004 for severe gastric reflux disease. In 2007, my body went into overtime with issues, and I had one surgery after another, to remove my L. ovary, gallbladder and R. ovary - those three all happening within a 6 month time frame. Talk about body trauma! My surgeon also discovered that I had scar tissue covering everything each time he operated. That would explain the pelvic pain I'd been experiencing for years too.

Well, I thought that would be end of all the issues, but no...the ongoing pelvic pain persisted, got worse and became the primary source of pain in my body. I still deal with Fibromyalgia and Myofascial pain, I have IBS and Painful Bladder Syndrome, along with Reynauds, but the pelvic pain has become unbearable. My family doctor is wonderful and has tried many things, but like most of you, it seemed that narcotics were going to be the answer for the longterm fix. I was referred and accepted into outpatient treatment at the Chronic Pain Centre in my city (I live in Calgary, AB Canada) and there, I work with a team including doctors, physiotherapists, a psychologist, and others. What they determined is that I've suffered muscle damage that's caused massive trigger points in the pelvic area, so the muscles are in constant spasm. My pelvic physiotherapist hasn't been able to release them, so we've tried twice now to inject botox into the psoas muscle to see if it will calm things down, to allow therapy to work. So far, it's only helped a tiny bit, but through some other tests, we also discovered that the top of my femur doesn't fit into the hip socket properly and there are tears in the labrum as well. I'm waiting for an appointment with the Orthopedic Surgeon to see what my options are. I'll probably need hip surgery and I wouldn't be surprised if the left hip needed help as well (and possibly the right knee and shoulder).

In the meantime, I am now off work as an Administrative Assistant and on long term disability , as I can't sit, stand, lift or carry for more than a few minutes at a time...I'm constantly having to move or shift position to prevent my muscles from stiffening or going into spasm. The doctor who diagnosed my Fibro and Myofascial pain said it's among the worst he's ever seen. I'm never pain free, I'm constantly exhausted because I can't get into the deep restorative sleep....I'm loopy and dizzy from drugs and as much as I keep a positive attitude, I'm frustrated beyond belief that this is what my life has become.

I attend group classes at the clinic for relaxation, diet, exercise, etc. and it does help to have other ways to focus and cope. It also helps to be with people who "get it". My husband is a saint, and treats me like a princess, but as wonderful as he is, he can't feel what I feel. Sometimes, the best thing I can do is soak in a hot bathtub (we've just bought a walk in tub, as I can barely manage getting in or out of the regular tub now...I can't wait to get that installed!) and try to focus on other things, but nothing ever makes the pain go away. I pray a lot - my faith in Christ is huge, and I allow myself to be taken care of so I can focus on healing. That was a hard step for me, but a necessary one. I've always been the doer, but now...I need to step back and take care of me.

I sincerely sympathize with each of you here...and since miracles still happen (I've seen them!), I hope that each of you finds your way to a pain free life!!

hugs,
Pam
Posted 7/18/2010 5:33 AM (GMT 0)
Hi everyone, it's great to meet everyone. Such moving stories. Well, here's me!

I'm 32 (about to be 33) and 10 years ago I had a moment that changed my life. I was crossing the street when a car ran the light and it hit me. It's one of those things you wonder what you'd do. I'll tell ya, you have great clarity. No life flashing--you just think, ok, this is going to happen, stay calm. And you try to run. And once you're laying there on the ground, you get up, even though your leg is broken, because more cars are coming.

Anyhow, thankfully my rather cushioned hips took a good brunt of the hit, but so did my knee. And I walked on a broken, uncast leg as no one could figure out the extent of the damage. Even now, no one is sure what exactly happened. The overall consensus is a broken femur, torn acl, mcl, and cartilage. The first doctor I saw didn't operate but the pain didn't go away. The second one cut me open straight away and I felt great for a few years. And then...Every couple years my knee gives and I can't walk. The pain is so intense I end up on a cane and vicodin. I've had 4 surgeries in total, and my next will be a replacement. I have taken my course of treatment into my own hands and now follow injections and pt and deal with the pain as it comes. Some days it's a 4 or 5 (good days!) some days it's an 8. But I recently managed to get off the cane which makes me happy and am working to ween off the vicodin and try arthritis meds. Alas, I'm not back in heels yet which really annoys me--I love heels!

Whenever I get down about it I remember that I was really lucky that day because I got up. And not everyone can say that. And I am very happy I found this forum because you have all been extremely helpful and supportive through some rough times. So thank you.

(I also have killer migraines but can't take imitrex or relpax (they make it hard to breathe) but I deal with those. Have had those forever.)
Posted 7/23/2010 12:50 PM (GMT 0)
Well my story.. Since i was born i have had a weak immune system but nothing too bad ever happened, and when i got sick, apparently i would just tell the doctors i would be better tomorrow and be playing even if i was told to rest for weeks, they said my attitude as a kid was what stopped me getting really sick! But when i was 8 i was diagnosed with an auto immune disease. i lived with that pretty well and got on with life even when i was sick, But then 3 years ago, i just started highschool and met so many new amazing people and i was LOVING IT! but one night i woke up sweating and crying and moaning without realising and had this incredibly sharp pain in my abdomen, i started vomiting. Mum thought it was appendicitis so took me to the hospital, they told me it was a twisted ovary so they operated but then it had untwisted itself when they went in to untwist it, this was good news until the day after when all the morphine had worn off and i was back with it again i realised the pain was still there and nothing had changed :( this continued for months slightly less pain then when i first went it but it was still there 24/7. i then got glandular fever at the end of 2008, tonsilitis at the same time and i was so worn down from the pain it just got worse and eventually i ended up in hospital because i could hardly swallow and was losing weight. after i was out of hospital i had lots of tests trying to work out what the pain was but nothing was found. every now and then the pain would get so bad and i would vomit and collapse and my oesophagus would swell up so i couldn't get food down. eventually it would all go down and i'd be back at school but sitll in pain, to this day i still have to pain but they don't know what the cause is yet, i also have supra ventricular tachycardia that is becoming worse with the pain. i am 15 years old and in year 10. i try so hard with school and do 3 hours study everynight so i don't get behind when i am sick and i spend alot of time catching up when i have been sick. the reason i try so hard at school to pretend everything is okay is because i want to do medicine when im older, but i want to be a doctor that explores everything and looks for things that are different, not just common text book cases. i have now been diagnosed with chronic fatigue but i tihnk i will be able to cope with all this and still become a doctor and hopefully solve my mystery and maybe alot of other peoples :) i hope one day i will find out what this is and have it stop, but for now just gotta keep smiling, stay positive and have fun and do as much as i can :)

thank you so much to everyone that is so supportivee.
Posted 7/24/2010 1:59 AM (GMT 0)
eyes  Ok, all about me. I joined a couple of weeks ago. I am 35 years young. I have been married to my junior high sweetheart for almost 11 years(been together off and on for 19). All together we have 6 children-4 of them belong to just us two. 3 boys and 3 girls. Ages 20 down to 7. I work as a foodservice manager for an inner city school district, here in Indiana. Very tough job. I have anywhere from 6-8 staff depending on projected inrollement for the year. During the summer I go with some of the other managers and we clean the schools(8 hour..hot days, and dirty) to supplement our income. We moved from California, here, 8 1/2 years ago partly due to my husbands job and partly due to lack of time we had to spend with the kids(due to have to working so much).

But I digress. My Chronic pain stems from FM, spinal bifida, herniated disc, and poss. RA.

Every day is a struggle. Work, my kids, their extra's in sports,music,art etc by the end of the day I can barely move my hands, feet, knees, kneck, sit, lay , stand. All the fun, unimportant things( smilewinkgrin ) I have a difficult time climbing stairs anymore, and i wake in the middle of the night feeling as though my head is going to explode. When I wake in the morning i can't move my hands and fingers, feet, and usually my knees or arms..for what seems like a lifetime. When i get the migraines that wake me I can't open my hand to open the bottles or get up to get water. My kids, or my huband if he is home by then, have to do it for me. It's so imbarrassing. I'm used to taking care of them, not the other way around. I have been to several Dr.'s and Rhuemy, and internal medicine Dr. No one is willing to do MRI's, x-rays or whatever to check for the RA..so meanwhile I get worse.They have all read the original Pr. doc report of FM and that's it. If it isn't one thing it's another. On top of all of that my husband went back to nite shift..due to his co. trying to save money, so I'm back to being "single" mom 6 days a week..which is so hard sometimes. blush Ok, sorry this was meant to be an introduction, not a whine fest. I am glad to have found this site, wish none of us needed it but since we do, i am happy to be here and look forward to chatting with everyone. I won't be so complainy next time, I hope tongue . Have a pain free day. Heather

Oh yes we have 5 dogs.Jilly-4, Jackie-2, Jackobe-2, Tiger-2, moo-cow-2 .They're Jack Russel's and Rat Terriers. Oh, and one cat Named Sassy we just rescued from a tree about 4 weeks ago. We think she is a Mancoon.She's about 8 weeks old and a pill butt..she thinks she's a dog. She wrestle's my two, and steals their bones. They are very patient with her nono , they know better.

Posted 7/25/2010 9:15 PM (GMT 0)
I am new here. Just signed on today. I am a mom of 3 boys. My husband's job has taken him away from home for the past year - so, I truely know what it's like to be a single parent. My pain doctor just confirmed I am a chronic pain patient at my last appointment.

here is how it happened...

I remember having sciatic pain while pregant with my 3rd son. Th doctor told me it was too early in the pregnancy to have such pain but still dismissed it as just part of the pregnancy. I eventually gave birth naturally to a 10lb 9oz baby. They were convinced he was only around 7 pounds until he made himself seen to the doctors. I remember hearing a pop during the delivery and asking what that sound was. Needless to say, it was a difficult delivery. No one addressed my back pain afterwards since they all thought it was delivering a large baby and it would subside on it's own.

When my boys were little and youngest still under a year, I had taken them to the pediatrician. I turned to pick him up off the table and my back completely went out. THe pediatrician had a nurse take me and the kids directly to see a neurosurgeon in the building next door. He gave me a shot and a scipt and sent me home. My back went out a few more times in the following months. Something as simple as bending to pick up tissue would lead to instant severe pain in my back and legs.

In 2001 I went back to see the neuro and after a MRI said I needed surgery for a herniation. The surgery was a success and I immediately had pain relief! My recover was only marred by the events of September 11th. My in-laws had flown in to help me with the kids and could not leave for months because our world had been shattered and there was no way to travel home.

I was completely pain free for 2 years when the pains started again. I lived with the pain for a few years until it got too bad. A MRI confirmed I had herniated the same disc again. Living in another state, I went to a different neurosurgeon who said I needed surgery again. I had surgery in 2008. The recovery was worse than the pain I had before. I never recovered and had pain close to 10 on a daily basis for 3 months. The pain slowly subsided to a level of 6 or 7 but never went away.

6 months after surgery, I was sent to an ortho for another opinion. He said I needed fusion. I chose not to have the fusion and my neuro then told me he was leaving the state to practice in another state. I was referred to a pain management doctor. I endured 11 injections in 11 months, and some new document based PT, I was also still taking pain meds. Things were still getting worse.

I was sent for a MRI a few months ago. I was diagnosd with Arachoid scarring (Nerves are clumped and matted within the spinal canal like spaghetti - ) at L4 and L5, severe granulation of the L5/S1, Epidural Fibrosis (S1 encased in scar tissue), herniations at the L3, L4, L5/S1 (Yes!! Herniated a THIRD time!). I also have 2 large herniations in my neck. My neck started to hurt this spring during PT.

I went to a neurosurgeon and ortho for their opinion. They both told me I need cervical and lumbar fusions. However, they tell me that the lumbar fusion will not help the pain but will only stabilize my back. I have been told to NEVER have anyone maniplate my back or neck - for fear it will get worse. So PT is out. My pain doc said he can not recommend a spinal pump because I have too much scar tissue and the pump would probably have to be removed in a year or so.

Adhesive Arachnoiditis has no cure. Surgeries and injections are NOT advised and would make it worse. I have read it is a debilitating condition that causes pain similar to cancer patients, it is progressive, and may even lead to the loss of us of one's limbs. I have also read that the pain associated with it is very hard to control with medication of any kind.

I have a cane but try not to use it. I am under medicated - my pain doctor understands this but considering I am mid forties, he wants me to hang on as long as I can with this med because options are limited and I will require them trest of my life. I have been taking Hydrocodone 7.5 for 5 years. You bet I have built up a tolerance and it often feels as though I am taking m&m's instead of pain medication. But I am trying to live with this.

I would love to know if anyone out here has Arachnoiditis... It's very, very rare. At least it is very, very, rarely diagnosed. LOL

Oh, and although this was long, and probably depressing.... I am actually a very upbeat and optimistic realist! I say realist because I accept I have this rare condition and there is no cure - Maybe I should have played the lottery!!!

:)
Posted 7/26/2010 7:08 PM (GMT 0)
I feel I should share my story because it just may help someone....but where to start....?

My story is sort of a mystery novel...tracking down the culprit, step by step, until finally you have him cornered!

Background: my family has a genetic predisposition to autoimmune diseases. I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. Wasn't dx with Hashi's until my thyroid was basically dead though, in my early thirties. Wasn't dx with celiac until much later in life...more on that further down.

In March 2004 I noticed that the whites of my eyes were yellow. It was a very serious case of hepatitis (AST/ALT > 3500!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. They were talking about a liver transplant at that point.....then I discontinued an over-the-counter herbal medication I was taking and things improved spontaneously. I was off work for weeks and had to endure months of my skin and eyes being the color of a yellow highlighter, but I thought it was just an isolated health incident. Eventually I was "well"....so I thought.

Then in the summer of 2007 I noticed severe back pain when my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like this before. We ended up cutting our visit short and going home because of my back pain.

I told my doctor about it and she xrayed my back but there was nothing on the xrays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, or any other tests at all, for that matter. Nor did she refer me to a specialist. I was basically dismissed as a hypochondriac.

The pain got worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job, I was a college instructor part-time in the evening, and that required me to stand. I ended up in a wheelchair and persuaded the administration to give me special tools to allow me to teach sitting down. In addition, I was developing MANY other bizarre symptoms that helped to keep me in the chair: muscle spasms in my feet, hands, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, lots of PAIN everywhere.

In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, RA, autoimmune hepatitis, lupus, and celiac disease. But the cause of my back pain and my neurological symptoms remained unexplained.

I joined several online health groups, including celiac.com, which has a board much like HealingWell except that it's exclusively for celiac disease or gluten intolerance. One of my friends there was shocked at the number of diagnoses that I had racked up in a mere 2 years and told me that I MUST be tested for Lyme disease. I insisted that it was impossible, but she kept pestering me until I decided to get tested just to shut her up! :)

Of course, I tested positive for Lyme, and have now been under treatment for 7 months with several different antibiotics. Unfortunately I have had Lyme for years now.....I believe I was bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that way, but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella) can definitely do damage! And I apparently have all three. Unfortunately my hepatologist did NOT think of testing me for Lyme or coinfections....most doctors don't, actually.

The tick-borne infections seemed to be dormant for a time, but the Lyme spirochetes were busily working on my spinal disks from 2004 to 2007....the bacteria LOVE collagen, so they frequently show up in the spine and accelerate degenerative disk disease to the point of causing radiculopathy. Spinal MRIs finally uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other neurological issues such as vertigo, double vision, etc., can be caused by either Lyme or Bartonella.

In addition to all of this damage, Lyme almost certainly triggered my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.

Mystery solved! :(

Please, any of you out there in diagnostic limbo....or even those who have suddenly had an EXPLOSION of diagnoses such as mine, especially those with autoimmune diseases, please get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).

Please visit the Lyme forum here at HealingWell plus the following helpful link for more info:

www.anapsid.org/lyme/index.html

I take Dilaudid for pain now, which works to some extent, but it doesn't help enough to let me walk very far.
Posted 7/27/2010 6:45 PM (GMT 0)
Well my story is pretty brief , it started about 2 years ago , I was at my sister's house and woke up and could hardly move , like I thru my back out but I had suffered no trauma , it went away after a few days . Then my hip started hurting , over the next 6 months it hurt more and more , I went to an orthopedic doctor who took x-rays and told me I needed a hip replacement . But being HIV+ my T-cells were 391 , they wanted it over 400 .which I later found out was a excuse the hospital I was using had a problem with infection and had been sued , I didn't know this so I kept trying to raise my T-cell count unsucessfully . Meantime the pain became horrible I went from no cane to one cane to two canes to a rolator to a wheelchair . I decided to change my eating habits to all healthy foods , no soda which was all I used to drink , no sugar . no red meat . Veggie drinks every day , vitiamins and anti-oxidents everyday , the pain lessened . I was on 6 oxycontin a day and 8 percocet , I was dopey all the time and hated it . After I started eating healthy , I went without any pain meds for 16 days straight and could walk with one cane .Howver I got cellulitus in the same leg I need the hip replacement in , the right leg . It went undiagnosed for 5 months and my knee and ankle and hip where now in horrible pain again , back on pain meds and depressed to boot . Finally found a surgeon who prescribed me the right meds for celulitus and its gone now , the pain I have now is where it should be in my hip . I saw the x-rays of my hip and the bones look like oatmeal , no definition and in really bad shape . I was suicidal and alone when I found HW , the family here had a lot to do with me getting thru this , I found a chronic pain partner who was also an insomniac and we'd be up all night keeping each other company on the phone . I wasn't alone anymore , I found people who really understand . I slowly started living life again , I started seeing a therapist and studying again . Got a giirlfriend and although it didn;t work out it help me see I can be happy again . The encouragement and caring support I recieved here had a lot to do with me seeing this thru . I'm at the point now where I'm soon to get my surgery maybe next month in August .Because I went to a different hospital and found out the T-cell count the first hospital was insisting on was bogus . But having great friends who truly understand from the inside what living with pain and depression is all about made all the difference .It still hurts a lot but your frame of mind has everything to do with how you deal with it . Much love to all Mikel
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