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    Old 08-12-2005, 01:20 PM   #16
    sjhw1119's Avatar
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    Relief Found For My Severe Daily Headaches/Migranes with Medtronic

    I just wanted to share my story with whoever has severe daily headaches and or migraines. For 13 years I had a headache every single miserable day of my life. It controlled everything in my life. I sought help over the years thinking "Oh, this will work, let's try". I got poked and prodded, test after test, medicine after medicine, ER treated me like a drug addict, missing out on my family, and the list goes on. I always thought something will come about, just keep my ears open. Well, one day in January I was watching GMA and they had a headache section. It was about a doctor in Dallas (I live in Houston) who was treating headache patients with a device that is implanted inside the body called a neuro-stimulator (made my Medtronic, originally they treated back pain patients with this device and they found out in worked with headaches). I said what the heck, it won't hurt to call this doctor and try to see him. Long story short, this doctor's office gave me the name of one of his associates in Houston. So, I made my appointment and went to see what he had to say. Come to find out, Dr. Alo, whom is a pain management doctor, said he is the one that researched this for headache patients. How lucky was I to find a doctor near me, but I was still guarding myself, never wanted to get my hopes up to much, because in the end it was always the same thing, nothing worked. So, after several visits to find the source of my pain we went for a trial stimulator. AND OH MY GOSH, IT WORKED!!!! For the first time in 13 years, I woke up and had a day without a headache!! So a few weeks ago, I had the permanent one put in. I still have headaches, but I turn this stimulator on and it is peaceful, comforting (this is how I best describe it), not throbbing pain. It takes my headaches away and has stopped two migraines from coming on in a matter of two weeks. So, no more medicine and no more pain.

    I want to get this information out there. That is my greatest wish, to help someone who is suffering from severe headaches/migraines. If you would like to email me, ask me any questions, please do. I want to help. I want to thank my doctor, Dr. Alo, who has answered all my and my families prayers for me. Thank you

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    Old 11-05-2005, 04:28 PM   #17
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    re: Some Pain Management Stories

    hi everyone, i just signed up today and thought that i would share my story: i am 40 years young or old depending on the day and i have been dealing with pain mgmnt issues for many years but only 2 officially. i have a bulging lower disc in my back, i am missing a vertibrae in my neck and i have carpal tunnel laced with arthritis. i have a 6 y/o son who just started kindergarten and really loves having me help at his school. i hate having my life changed by my pain and i have to admit that i am not very good at dealing with the changes! i volunteer at school once a week and by the end of the 3.5 hours of standing on the hard floor i am one hurting lady. i am on disability and unable to work, which is a first for me, i have always worked. fortunately for me my husband is very supportive and tries his best to help, he just doesn't understand what chronic pain is like and how limited it can make you feel i don't know about anyone else, but i get really mad when i can't do something with my son or some kind of outing with my husband because of how it is going to make me hurt. i can't even ride a bike because it renders my hands useless for the rest of the day. the cold weather here in alaska makes life less than pleasant on some days, but then i look outside and see the most breath taking sun rise or set and momentarily forget about the pain. i have decided to join this group not to compalin but to share information and hopefully find alternate solutions to the different yet same challenges that we all face in our little pain management world.

    Old 12-12-2005, 08:48 AM   #18
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    re: Some Pain Management Stories

    I posted this in another thread, but figured I should here too. This is the 'long' version - the 'condensed' one is in the "100% Compliance. PERIOD" thread".

    I'm 27. I was born with a bone and joint disease that was always labeled either Arthrogryposis Multriplex Congenita (AMC) or Multiple Epiphyseal Displasia (MED), causing joint contractures, weak and thin bones, vertical talipes, Pectus Carinatum, and several other assorted problems, mostly affecting my skeleton and joints. I'm affected in every bone and joint too - knees (don't bend or straighten all the way), hips (limited movement), ankles (limited movement), wrists (curve inward), neck (abnormal structure), my entire back (abnormal structure), my teeth (short roots), shoulders (they radiate inwards), elbows (don't bend or straighten all the way), fingers (contractures) and, toes (contractures - hammer toes). My doctors and I still don't know the specific names or causes of many of the problems. Other problems are very severe asthma due to my relatively small lungs and an enlarged heart - continuously shows up on my yearly echocardiograms. I have scoliosis with a compensatory curve above the worst area in my low back. Recently I was diagnosed with osteoperosis and some non joint related problems such as Irritable Bowel Syndrome and lactose intolerance. I have a lot of sinus and allergy issues too. My orthopaedic doctor thinks that "the strain of walking" is making my feet worse. I've already developed a piece of necrotic bone in my left ankle and he fears it will only get worse. He's pushing for an ankle fusion, but I'm sure that will screw the rest of me up more than I am now. Lastly, in 1995 I had a rather severe Asthma attack and I contracted RSV (right?) This left me on Dexthamesasone (Decadron), a corticosteroid, for over 1 year, leaving me with GERD and helping to weaken my bones. Lastly I have sleeping problems. I've had them since birth too and I tend to toss and turn thru most of the night.

    I've had almost two dozen surgeries to correct problems. These range from having the contractures in almost every one of my fingers and toes surgically straightened, except for one toe on each foot and one finger on my left hand. I have had my septum straightened to stop my sinus drainage from blocking behind it and causing severe headaches. The surgery was succesful, but as a result, I have excessive drainage from my nose and down the back of my throat. I had my wisdom teeth out at 17, but it took very long to heal and my back teeth shifted further back. When I was 13, I had the upper canines in my mouth removed because they were impacted. This caused a lot of my teeth to migrate, but braces were out of the question due to my short roots - my dentist was afraid that they might get pulled out by the braces. When I was somewhere between birth and a year old, I had some sort of a hernia (I can't remember the name) because I don't think my testicles had decended. In 2003, I had a Cervical Fusion to break and re-fuse C5 and C6 in a more natural position. Unfortunately, my vertebrae are somewhat already fused and my back has a reverse curve up until my C-Spine. At my neck, the curve disapears and it is straight. My head also sits on my neck the wrong way, so it appears I have a short neck.

    I take a lot of medication; some for pain and most for other problems. This includes 90mg of Morphine (Avinza) daily with Percocet for Breakthrough pain. Asthma meds are Serevent (I'm planning to get off this), Asthmacourt (I think I don't need this anymore) and Advair (this works!), plus Singular but I don't think it works as well as Accolate did and my insurance Co won't cover Accolate. For GERD I take Nexium and I take an occasional Lunesta for sleeping problems. Colchicine is for possible Gout (If I'm having a flare-up in my feet or elbows), Rhinocort for allergies/sinus troubles, and Antivert for the nasuea my neck pain causes. I was on Bextra and there's a few anti-inflammatories we're (my doctors and I) looking into, but I'm not one one currently. I also Fosomax, but the side effects absolutely screw me up, so I've been deviating from 1 a week to 1 a month almost. I was on Actonel and it caused more problems than it was worth, so we're being very cautious with osteoperosis meds.

    That's most of it. I've left out hospital visits for Asthma attacks, but that's usually one lengthly visit (2 weeks) every 9 years so far.

    My pain is under control for the most part. I still have to be very careful because almost anything can make me hurt and even though it is under control, I can still move in a way that can cuase instant and long lasting pain I wasn't expecting.

    Last edited by Fibbles; 12-12-2005 at 08:51 AM.

    Old 05-07-2006, 10:13 AM   #19
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    My Story

    Hi! I guess you could say my problems started back in March 2000 with a fall down some stairs-landed on my tailbone. My PC ordered xrays of my back which came back negative. Told me to go back to work and I would heal w/o any intervention. (Little did I know that fall would change my life-it was the first of a multitude of problems that would ensue) but I'm getting ahead of my story.

    I had a mva-Nov 2000-hit from behind-increasing neck pain. Jan 01 referred by PCP to neurosurgeon and pain mgmt (PM) doc. Neuro had mri of neck done-said C2 causing nausea and confusion and not to worry, the pain should resolve w/o further intervention; however, after mri, C3 thru C6 injuries incl 2 herniated discs and facet joint injuries. Neurosurgeon wanted to do surgeries on herniated discs, I refused surgery at this early stage. PM doc put me on (Elavail to help sleep, paxil for anxiety & Vicodin for pain. He did multiple cervical injections then eventually diagnostic nerve blocks which led to me having radiofrequency ablations (RF's) on Level c4-5 and c5-6. First RF's gave complete pain relief 1 year and 2nd gave me 2 years relief. Except for the headaches, I'm now thinking things are looking good.

    Then, in March 2001-as fate would have it, I had another mva. This mva was very bad, hit from behind by SUV doing 50 mph in school zone while I was stopped at stop light. It curled the back of my car into the front seat, trapping myself and my then 15 yr old daughter (FYI-she also has problems to this day but that's another story). I was on my way taking my 15 year old daughter to school Thank god my 11 yr old son was sick that morning bcz he would have been in the back seat and most likely would not have survived. This mva also caused severe low back pain and I still couldn't sit for more than 10 min w/o pain. Referred to land/water therapy PT.

    Dec 2002 diagnosed w/occipital neuralgia. Also, non-related to spine, Hand Surgeon diagnosed me w/bilateral CTS (carpal tunnel syndrome). Also, mri of spine showed 3 bulging or herniated discs at L4-5,L5-6, S1. Sent back to neurosurgeon for consult who wanted to do Fusion on neck, I again refused. 3 yrs later I couldn't bear the back pain any longer so had Fusionlaminectomy on L4-5,L5-6, referred to Johns Hopkins for discogram to determine which level(s) were causing my pain (anyone who's had that procedure done knows how painful it is). Then had 2 level fusion and laminectomy Sept 2005. After a few days in the hospital I noticed my legs were hurting, like a burning pain from thighs to my calves-doctors contributed that pain to being in bed for a week(that pain is still with me today). I also continued to have low back pain below where the fusion was done and still couldn't sit for over 10 min max without pain radiating in my whole buttock thigh area. My hips starting bothering me and I'm still having this "wierd" pain in my legs.

    In the meantime, I was still having neck/headache pain-it would start at base of skull and radiate up my head into forehead and lasted 1-3 days depending on severity-at times felt like a migraine-lights,noise, movement bothered me and I had nausea, dizziness. Neurosurgeon said it was my C2 & occipital neuralgia-which is caused by the occipital nerve. I told neurosurgeon I was v ery depressed and was having panic attacks 2-3 x day-he sent me to a neurologist for neuro workup and EMG/NCS on legs (OUCH) which came up negative. He prescribed Cymbalta for depression and continued Paxil for panic attacks, and referred me to rheumy for suspected rheumatoid arthritis.

    Jan 06-Rheumatologist and after blood tests come in he tells me I have OA in all my major joints which will eventually spread to the hands and other small joints. I told him I was relieved it wasn't RA. He looked at me surprised and told me that even tho RA is a very bad disease, RA sufferers can take a variety of medicines. They normally start off with oral med that provide relief for early RA and when the disease worsens, they have injectable meds which not only provide pain relief but also slow s down the degeneration of the disease. So, I asked him what he could give me to do the same. He told me that sad as it is, there is no drug you can take that stops the degenerative changes in your joints. There are pain meds and he offered to change my Vicodin to Oxycontin, which I politely refused. Even tho my Vicodin is not providing complete relief of my pain, it helps on low pain days (I'm now on higest dosage possible (10/650's).

    I asked him why there were no drugs to help OA but there were all these new drugs coming out for RA. He said there are more funds alotted for finding a cure for RA than OA. This didn't sound right. I was angry. I had a very dismal diagnosis of a disease that eventually will cripple me and there are little to no funds for research that could possibly stablize this disease. I wrote letters to congressmen, senators, and anyone who will listen.

    UPDATE: (and I promise this will be short-if you get this far thanks for your patience and interest in my story). The RF's in my neck have worn off and neuro wants to do fusions on neck & back. I still go to PT off/on for pain & stiffness in joints(OA has moved to my feet & toes-very painful to walk). Recently dx w/Peripheral Neuropathy in my legs-it's nerve pain, not joint pain. Also after 6 years I'm finally finally scheduled for MRI of my sacruum & coccyx. I still suffer w/pain sitting.

    Meds: Vicodin, Paxil, Cymbalta, Lyrica, Elavil (amiltrityline)

    CONCLUSION: I applied for SSDI and was denied but thats to be expected on 1st appl from what I'm told. But, for reconsideration I will have an attorney w/me to fight them. I have DDD and/or OA in neck, back, si joints, hips, knees, feet and toes and have difficulty walking (use a cane) but I'm hanging in there and still very proactive in helping people who have OA. If anyone has any questions, you can post on the forum under Arthritis.

    God Bless

    QUOTE:: If you are at the end of your rope, tie a knot and hang in there.

    Old 05-08-2006, 06:25 PM   #20
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    re: Some Pain Management Stories

    I have been reading the posts for a few weeks now and have learned so much and thank those of you who participate and support. I decided it was time to write my story of lower back pain times almost 3 years and have no real diagnosis:

    I woke up one morning almost 3 years ago on vacation in a hotel room and had this pain in my lower back, in a place I never felt pain before and I figured it was from sleeping in the strange bed - that I must have slept in the wrong position or overdone it the day before playing in the waves at the beach. Here is the course of actions (and non-actions) I have taken and so far:

    Fall 2003
    GP 1 - took x-rays and said nothing was wrong, suggested I loose weight and would refer me to physical therapy 'if I really thought that was necessary'. Pain would mostly come when I stood and I could relieve it easily by sitting down for a few minutes.

    Fall 2003 - Summer 2004
    I lost 30 pounds through exercise and changing my diet (Dr. Phil 7 keys). Pain increasing and starting quicker upon standing. Also noticed that I could not sleep (lay) on my right side or back or I would get the same pain. My back pain was not on my list of priorities at this time and I felt sure if I went back to my doctor that I would be dismissed. I am so upset at myself for not standing up for myself Ė either going back to my doc and saying hey my back really hurts and itís worse or getting another doctor Ė but I didnít Ė this was part of my inaction.

    Jan 2005
    Pain is interfering with everything. I am sure that something is seriously wrong with me. I used a chiropractor years before for a problem with my upper back that was quite painful and was fixed in 3 months. Finally broke down and spent the time and money and went to chiropractor 2-3 times week for 5 months, but it did not help the pain at all - but I did get 'straightened out' again. I continued to exercise during this time despite intense pain while doing so and managed to maintain my weight loss.

    May 2005
    Went to Orthopedic surgeon, as I was sure I had a disc problem. He looked at x-rays from chiropractor and told me I had mild arthritis and DDD but nothing to account for the pain I was reporting. He did a MRI that came back 'clean'. I hate that word. Because I had a small amount of pain when bending a certain way I was referred to a colleague who did a facet joint injection that didn't help. I was then told there was some note in my MRI about a renal (kidney) something or other and although they thought it was nothing that I should get a GP and have a full work up and make sure nothing else was causing the pain and that they could do nothing more for me. (That was after giving me hydro for 2 weeks which was the first time that I got relief from this darn thing Ė I wondered why it took so long for me to get this little pill Ė why didnít I ask for this before, why wasnít it offered Ė again my own inaction.)

    June 2005 - November 2005
    I got a new GP because I didn't want to hear that I needed to loose more weight or needed to go to Physical therapy 'if I really though it was necessary.' New GP was great - even though I had no diagnosis he listened, typed everything into his laptop and prescribed me hydro and did the full work up including cat scan which showed ovarian cysts on same side as back problem, again which didn't account for the pain and after many ultrasounds the little critters went away by themselves anyway. Also did Accupuncture during this time- no help.

    Nov/Dec 2005
    Pain increasing and generally out of control. I didn't understand about tolerance so at first I thought the pain was just getting worse, then when I learned about tolerance I thought it was just the tolerance and not the problem getting worse, but later I came to understand it was a little of both, I had built up tolerance so the hydro wasn't working as well, but the pain had changed and was getting worse, to the point where I could hardly stand anymore and would often ache for hours even when sitting or laying down. Now if I stand for a few minutes it comes on quickly, I limp when I walk, and it radiates very badly into my hip, groin and thigh. (I finally quit exercising in November, after getting off the bike or elliptical for even 20 minutes, I was finding I couldn't walk - I mean I could if there was a fire or something, but mostly I just collapsed in the nearest chair in the most awful pain for about an hour.)

    Feb/Mar 2006
    Started physical therapy, many weeks later determinded it was no help either. Went on Topamax for migraines via GP who was not that aware of its nerve pain use and neither was I until I researched. (I now know the topamax helps my back pain.) I wanted to increase opiate pain meds after I understood the tolerance issue and wanted to do more exploration as to what is wrong so it can be fixed if possible because it is destroying my life. I had a 2-week period where I wanted to die - well kind of. I am a little embarrassed cause I know lots of people have it worse than me and donít want to say that I wanted to throw what I have away - but I contemplated it. For many months before this I had been praying that I could have cancer in my back - figuring then that they could either treat it and I would go in remission or that I would die and my suffering would be over (my family would have to accept that whereas killing myself was not an option). I understand and now accept that my problem it is not cancer - if it was I would know by now. Then one day a couple months ago I was on a ladder outside my house, about 12 feet up in the air washing windows (I don't like to accept that this pain has claimed me), and I thought just how easy it would be to have a little fall and I was thinking (obviously not so clearly), anyway I was thinking that maybe if I fell carefully and didn't really hurt myself that I could just say I hurt my back in the same place it already hurts so much and then maybe someone will really take me seriously - do more tests, give me more meds (my GP does take me seriously, he just seems limited in what he can do, and I am not comfortable asking for more drugs, I did once and he upped them a little but it an uncomfortable situation and it didnít really help Ė I still donít quite know what I need but I am no longer contemplating ending it all), Anyway, then I thought maybe if I fell I would really hurt myself, maybe permanently and I would have a good diagnosis and be able to get pain meds for that and at the same time it would be enough to take care of the pain in my back. I started to cry and I climbed down the ladder. It was then that I knew this was the #1 problem in my life and that I needed to take action, that this was my problem and that waiting for someone to fix me or give me pain meds wasnít going to happen by itself. I was scared but I made the decision to try to go to a pain management clinic (which I really knew little to nothing about) and if I wasn't able to get relief of the pain or go to such a clinic that I had to keep insisting on treatment until the underlying problem is resolved.

    Back To GP, told him I was going back to Ortho to give update of symptoms and ask if he wanted to do any more tests and if not, then I was going to ask for referral to Pain Management. GP supported this idea and said to mention the pain in hip in groin as that seemed to be what had changed. Went to Ortho, who told me all the same things as previous, I had mild arthritis and ddd nothing to account for the pain I was reporting. I felt that discounted feeling again although this doc never said he didnít believe me, he just restated the facts, you have nothing wrong with you to account for the pain you are reporting. I then took a deep breath and with voice cracking asked him to refer me to pain management and he did although he did it reluctantly and in a hasty manner, he quickly wrote PAIN MANAGEMENT on this paper in big letters, ripped it off his pad, handed it to me, told me to take it to the front desk and walked out the door - it was weird - I really didn't care though, I got what I came for. Like I said it was weird, but maybe it was how I perceived it Ė someone told me that some doctors donít like when they canít fix something so maybe that was it, or maybe it was what I perceived Ė that he didnít really think there was anything wrong with me. So, a couple weeks later I got into PM which is another part of the same clinic and my PM doc is the same doc who did the facet injection about a year ago. He had me sign contract and do a drug test, changed my meds (different drug and lower total amount) which was very bad for a couple weeks and he did another facet injection which was really bad this time - it aggravated my pain very badly Ė I thought I was loosing my mind and still donít understand why 10 days after the injection I was still in worse pain than when I had started. I was ready to dump him and go back to my GP, (I was also considering the ladder again) but I waited to the next appointment with the PM and the end result was much better. He increased and changed the meds and I have better pain control than before I started PM but I think I have a way to go - it looks like the PM needed to wait for that drug screen to come back - just because I told him my GP had me on such and such didnít mean he was going to start me or give me more than that - I understand it now - just wish I could have prepared mentally for it, to know that for 2 weeks I was going to be in more pain than I had ever been in. I could have taken vacation from work instead of calling in day after day that I canít come in cause I am sick and too afraid to call the new PM cause he will think I just want drugs. Next step is a diagnostic epidural, which I have no hope of doing anything for me. The PM says there is a chance that spinal fluid is leaking into somewhere.

    Old 05-10-2006, 01:09 AM   #21
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    re: Some Pain Management Stories

    Hello! I'm new here so I thought I would tell you a little bit about me. My husband and I have been retired for about 2 years,I am 56 years old and have been diagnosed with a B12 deficiency,and get the monthly b12 shot.I have had the nerve reaction tests,once with the zapping of the nerves on the skin,and the one where they stick little needles in the skin and zap them with electricity. Both results were that I had lost some feeling in my feet and lower legs. My Neurologist says that I have Peripheral Neuropathy. I started complaining about my feet burning, like I was walking on hot asphalt,or hot sand, about 6to7 years ago, but all of the Drs. would say was "sorry I can't help you''.Finally,last sept.I got a referral to a Neurologist who asked me alot of questions, and he ordered some blood tests.They came back that I am a borderline diabetic,no pills or shots ,just lose some weight and watch what I eat.Also my b12 level was 170, so now I have Pernicious Anemia also. I am in pain pretty much all the time,I have heard that most PN people only hurt at night,well sometimes the pain gets a little worse at night ,but usually it's all the same.I was put on the gradualley increasing doses of Nortriptyline, and as I got used to the meds,they stopped working.I slowly increased it until I was up to 200mgs. I was hardly sleeping, and the pain was so bad,I finally called my dr. and he put me on Hydrocodone/Acetaminophen 5/500.One in the morning and two at night,and this worked for about a week,but the pain came back,so another call to get the mgs. increased.He did'nt increase it but he said to take two pills every six hours.I am trying it that way,I've done it for 3 days, and have'nt been happy yet.Oh! I started taking 600mgs. of a vitamin suppliment with Thiacin in it that is supposedd to help with the PN. My body, mostly my legs, has started to jerk a little,like when you get an itch,it does'nt last for more than a few seconds,and no one has noticed it but me.Weird huh! I also lose my balance alot. Well that's my tale of woe. Bye booemmy

    Old 05-10-2006, 07:25 AM   #22
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    re: Some Pain Management Stories

    I have fibromyalgia and drs say no cure. I went to a pain clinic that helped me learn to focus, breath, calm down, get pain under control. It was hard to learn all of this expecially when the pain kicks up and there is no control.

    When I begin to feel pain coming on and severe I talk to my self, telling myself to breath slowly. Focus on relaxing my body because really you don't even realize you are tensing up and that just makes it worst. Practicing relaxing your body or body parts helps so that when the pain is severe you can do a good job. Like I said it is not easy.

    On Sunday when I get ready to go to my congregation meetings, I already know what to expect. Totally exhausted by the time I'm ready to leave home. I don't take meds but found that Motrin is a help in relieving the pain. I usually take 4 in the morning, 4 at noon, 4 in the evening and 4 at night. That is alot but then at times there might be a day or maybe two that I don't need it at all. When I get to my congregation I usually cry for the first half hour and breath, focus and pray. Then the pain subsides until I have to get up. Then I feel stiff but I manage. Sometimes the pain is so severe that you feel like your body is going to go into convulsions because there is no control left in you. Thats when I have to do nothing but lay down, cry and work on focusing and breathing. I have never had to take more than 12 motrin in one day but at these times I do want to take more but I don't. I have lived with my pain for 20 years now, first it was pain from a car accident and after a few years the doctors told me that sometimes stress brings on fibro. I actually think that all the doctors attended a seminar and learned about Fibro and came home and told their patients they had this. The year I was diagnosed, there were at least 5 other people I know that were told the same things. Well we just have to keep trying.

    Old 07-03-2006, 11:51 AM   #23
    Join Date: May 2006
    Location: Phoenix, AZ
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    jujuz HB User
    re: Some Pain Management Stories

    Hi I'm Julie!

    Nice to meet all of you!

    I'm a chronic pain patient and first and foremost (knock on wood) VERY grateful for the excellent pain management care I have right now. It hasn't always been this way so I certainly sympathize with anyone having problems or in pain! It sucks! I actually had one pain mgmt doc years ago tell me he wouldn't prescribe me anything that was going to make me feel good! OMG!

    My current meds are 30 mg long acting morphine twice a day and 4 15mg morphine SUL for bt. This is new to me....I was struggling with 8 norco's (10/325 hydrocodone) for a few years. I've been treated by pain mgmt for almost 10 years now.

    I am presently being tested for bone disease, and/or some kind of bone or muscle disorder. I have vitamin D issues and am presenting with symptoms of malabsorption, weight GAIN (YUK I'm so ******), low hormones, hypertension, dizziness, fatigue, and INTENSE leg and arm pain. Celiac Disease? Osteoporosis issues? Maybe. I have a bone scan next week.

    Also presently have fibroid tumor 4.9 cm (in uterus) and some cysts on my right ovary. Pretty bad endometriosis with it. Had an endometrial ablasion last September for anemia during periods. Worked somewhat.

    Pain mgmt for last 10 years actually for peripheral neuropathy, the PAINFUL kind, not the numb kind. Burning, Freezing limbs, "electric shock-like" pains in feet and legs. The only complication I acquired from type 2 diabetes.

    Surgeries include: (most recent first)

    endometrial ablasion, gastric bypass surgery, caesarean section and tubal ligation, gall bladder surgery, tonsilectomy

    I'm 44, work and have 2 kids and a great spouse. Without the pain medication I'm down for the count. I ran out last month for 3 days, ended up in ER. When those pain meds ran out (all before my next apt at pain mgmt) I slept for minutes at a time in a burning hot bathtub soaking my legs in unbearable pain.

    The morphine makes me tired (or is fatique from bone problems?) but HEY, that's just fine as long as I can function and I'm not in pain.

    I'm no angel, when pain mgmt scripts weren't enough my pcp scribed me some too. My ob/gyn jumped in a few times too. I've had my docs a long time and i'm lucky to have them.

    Thanks for listening, hope to help out whomever I can whenever I can! Being in pain is hard enough for me to understand (denial is easy and powerful) let alone find ANYONE out there who also understands how we feel. So WE HAVE TO STICK TOGETHER!

    LOve ya All, Julie

    Old 09-17-2006, 11:34 AM   #24
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    hoosierken HB User
    re: Some Pain Management Stories

    Well this is my first post so I'll just introduce myself and say a bit about my condition. Initially I was going to type out the entire story but decided it was way too long. SO, hee is the condensed version.

    My name is Ken. I am 46 years old, married, father of two. Both my son and daughter are now married and live nearby. In fact my son and his wife just bought a house next door to ours.

    In March 2003 I was riding my bike (road bicycle, not motorcycle) in a club ride. 40 miles total. At the 38 miles mark I swerved to avoid getting hit by a person driving a truck. I was wearing clipless pedals(my shoes are locked into the pedals) I tumbles over and landed on the curb. I broke my right hip right below the head. At the time I was very sore but wasn't aware of the fracture. I even got back on my bike and rode the last two miles. Then when I got back off the bike I heard a terrible sound and felt the most terrible pain. I knew that the bone was broken at that time.

    1.) I have avascular necrosis in the hip
    2.) Doctoirs agree that it is too early to replace the hip. I also have damage in the pelvic area.
    3.) A hip replacement will only last 12-15 years. And a second replacemnt for me is doubtful.
    4.) Trying to wait a few more years if possible for the replacement.
    5.) Nerve damage to the sciatic and femoral nerves either from the crash or from the initial repair.

    Meds: 90 mg Avinza (slow release morphine) (daily)
    1200 mg neurontin (daily)
    30 mg lortab (daily)
    Pain patches as needed

    I will have a femoral nerve block this week.
    I am working. On a good day I can get by with one cane. On bad days...2 canes to just staying in bed.

    The doctors have told me that pain is most likely something I will have to live with even with the hip replacement. Not the best news.

    I'm here to learn, offer support...and at time maybe look for support. I have battled depression and PTSD before and do not want that to come back.


    Old 09-22-2006, 12:50 PM   #25
    knwlt28's Avatar
    Join Date: Sep 2006
    Location: phila,pa
    Posts: 5
    knwlt28 HB User
    re: Some Pain Management Stories

    hi this is my first post i suffer with severe pain from a broken neck in 5 places i have had cervical fussion,s from c2 to c5 an c6 to c7 had one collapse and was refussed in 95 since then i have another collapse oh well i am on oxycontin 40mg 2x and 2 percs every 4 to 6 hours for breakthrout i also use lidocain patches mostly on my hip where i gave up bone 2x even though i take my meds as directed it only helps me deal with it not toatly get rid of it i have no idea what 8 hours sleep is 2to 3 at most then the pain starts again well since 1986 when i broke my neck and 1995 when i had my anterial fussion both my docs have retired and now with the collapse i have no doctor will touch me so thay just say here are your meds go live a normal life lol now i wonder where do i go from here

    Old 09-25-2006, 04:34 PM   #26
    dallas3_71852's Avatar
    Join Date: Sep 2006
    Posts: 52
    dallas3_71852 HB User
    re: Some Pain Management Stories

    Hello all ,

    My name is Linda I am 41 yrs old, This is my story, in March of 2003 I woke up one morning and literally couldn't get out of bed, I had a friend drive me to my family doctor, ok he tells me I have pulled a muscle, he gave me pain meds and muscle relaxers, I went back to him in a day or so, I can't remember exactly, he sent me to a Orthapedic doctor and he gave me a shot,on 04-04-2003, I was still in constant pain, so I thought a chiropractor would help so I went to a older one my Dad used to use, he got me on the table and He started to move me and I went ouch out loud and guess what he stops and tells me to leave his office he wouldn't touch me, so I went to another chiro and he started treatments on me, it seemed to help some , by this time several weeks had gone by and I had seen my family doc no telling how many times, so I switched doctors,
    I started going to this doctor and went to hime several times and finally he decides I need a MRI, this is what the MRI showed,

    1. Slight levoscoliosis of the lumbar spinewhich may reflect muscle spasms
    2. Degenerative Spondylosis at L5-S1 with narrowing and loss of
    3. Moderate sized left paracentral and left foraminal protrusions of disc material at L5 - S1, I go back to my doc and he is like you really are in pain, I am like duh, He sends me to a Neuro doc, he sends me for a ct and it shows I have cysts on ovary and a mass on my kidney, so he sent me to get both ot those checked out before he does surgery, those both came out okay, he is then like I don't know what to do, so then he sends me to a pain doct, and I got a epidural, it helped for a while, then in feb of 2004 my back started back again, I had then done and changed back to my other family doctor because I didn't like the other, finally in 10 of 04 my doc decides I may need a MRI so I wentand this is what it said.

    1. mild desiccation of L3-L4 with degenerative narrowing, desiccation of L5-S1 with moderate degenerative narrowing.
    2. central subligamentus herniation of L5-S1,narrowing of left lateral recess
    3. generalized budgling of L3-L4.mild degree of overall narrowing with some degenerative changes.
    He was like you need surgery , he couldn't believe what I had already told him about the other doctors, I had back surgery on 12-07-04,

    I went back to work in like March of 05, my back hurt some but much better,In Feb of this year My back started back again, he finally sent me back to Neuro that done my surgery, he ordered a MRI and it showed I have 2 buldging disc, apparently not bad enough for surgery, They tell me my back will hurt me for the rest of my life, because of what I have wrong with it, I went last Monday and had a Epi injection done and it has helped some but I am constantly hurting, I have had a office job for 9 yrs and about a month ago they moved me and put me out on the floor driving a hyster, no way I can do that , MY doctor told me I could prob get on Disability, what do I do in the mean time, it takes forever, I suppose I am going to quit my Job been there for 23 yrs and this is the thanks I get from them, I have a constant pain just about all the time, I can't stand for 30 min without my back hurting bad, the doc has me on Hydro's and Muscle relaxers, they also tell me my sac joint stays inflamed. It hurts me to sweep or mop, anybody have any Ideas for me, I go back to my Pain doc on wed does anyone know what I can expect?

    I am glad I found this site,I look forward to talking to and about my probs, I think most of you guys can relate , I have thought about going back to school and getting a degree in something,


    Last edited by dallas3_71852; 09-25-2006 at 04:37 PM.

    Old 12-02-2006, 01:56 PM   #27
    wendyinpain's Avatar
    Join Date: Dec 2006
    Posts: 3
    wendyinpain HB User
    Re: My Story

    Hello i guess this is where i start? excuse the Ramble on but i suffer from so many different pains and conditions i never know where to begin
    i have suffed from pain since my first child i had emergency c section in 1993 yes that would of made me only 17, i am now the big 30 and all grown up i guess, yet i still love to play in the snow with the kids but it causes me PAIN. i used to live on the ease coast then moved to a island just off the coast of Seattle. where i guess the pian really first started , i had exteremly bad hot stadding pain in my uterus and girlie parts.i was put on 10mg. vics. every 4 hrs as needed but this never really worked and i ended up with surgery and still i suffer from period pain !!! then in 99 i had a lifting accident and ruined my lower back for ever i did injections, pain pills, blah blah blah, but for some reason i can't seem to find a dr. that wants to treat me and the pain i am willing to do anything i need for my life to be good again, i also just 9 weeks ago had a near fatal car accident , i fractured my pelvis, ribs, and dislocated my hip, now i have more pain but i feel i have no one to turn to no one to help this PAIN WHY??? are Dr.'s afarid to prescribe the pills i need to have the best quality of life?i haste all the pass around games that i get i feel that this is a very serious issue for me and i just want the time to be heard. i get passed from dr to dr so never do i find the one the fits me. this is a long battle that i have been fighting for a long time i just want some relife and some help in this struggle that i live every day and i hate this pain fight and i just want to die i wou;d rather be not here at all then living in all this pain. Very depressed and very scare lilmama

    Last edited by wendyinpain; 12-02-2006 at 02:17 PM.

    Old 02-02-2007, 03:53 AM   #28
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    Join Date: Oct 2006
    Posts: 59
    nikelboi HB User
    Chronic pain


    This is my story with chronic pain. Reading others' posts it struck me what a strong bunch we have here! It inspires me to continue on. I don't have much of a family, just great friends, to help me deal.

    I was diagnosed with cerebral palsy at 10, but didn't start having chronic pain from arthritis and spasticity until about a year ago (at 27 years old). This included lower back and hips. Arthritis, especially in the knees and ankles, became common.

    I was diagnosed with endometriosis at 25, and an ultrasound found ovarian cysts on both sides.

    I was also dx'd with chronic fatigue syndrome.

    Most days, my pain is moderate, except during periods, when it can get severe. Still, I take *no* pain meds, because of an (undiagnosed) chemical sensitivity where I cannot tolerate even OTCs without some reaction.

    Mostly, I am interested in this list to find out natural remedies.

    Thanks for sharing your posts and reading mine!

    Old 02-02-2007, 10:27 AM   #29
    Senior Member
    Join Date: Feb 2007
    Location: KY
    Posts: 182
    Lotty667 HB UserLotty667 HB UserLotty667 HB User
    re: Some Pain Management Stories

    Hi, I am 42 years old and have been living with chronic pain for about 5 years. I have 3 herniated discs, two pressing against the spinal cord and 1 pressing against the S1 nerve root.

    I also have severe arthritis in my spine and have been diagnosed with DDD and fibromyalgia.

    I have a really great doctor who has helped me to manage my pain, to the degree it can be managed for the last two years. I recently heard he is getting out of the pain management business. GREAT!! I am hoping to talk him into keeping me on until September when my insurance kicks in.

    As of now, I'm under the preexisting condition clause and no PM doctors here (KY) will take you on without insurance.

    Some days, I don't think I can take the pain. I cry all the time, can hardly take care of myself much less my kids and husband. I just want my normal life back. I don't know who this person is that I have become and I certainly don't like her.

    I am on 30mg of roxicodone 3 times per day and 4 loricet 10/650's and 4 soma's a day. Still I have days when I can't even get out of bed.

    Oh, well, guess life goes on. Thanks for listening (or reading) and I hope everyone here has a relatively pain free day.

    Old 03-12-2007, 12:17 AM   #30
    Join Date: Mar 2007
    Location: tampa, Florida USA
    Posts: 8
    kimmark1 HB User
    Unhappy re: Some Pain Management Stories

    My spinal tap nightmare

    I went to the ER on a Friday night years ago with the worst headache I had in my entire life.I had a sore throat earlier too and was getting the flu, I guess. The doctor asked me if it was the worse headache in my life and I said yes, so he gave me a spinal tap to test for meningitis. While I waited for the results, he gave me a shot of nubaine for the pain. That worked and the results were negative, so he sent me home with a vicodin script. while my husband was driving me home, I got so sick, I threw up out the window.
    The next day, the pain came back and I was sick to my stomach. By the end of the day, I could not put my head up without being in excruciating pain in my head and the back of my neck. I couldn't sit up and had to be in a lying down position only, so I would not feel the pain. The vicodin did not help,only lying down would ease the pain. I had to crawl to the bathroom because if I stood up, it would take about 2 minutes before I would feel the pain in my head and back of my neck. I told my friend what happened and she said she went through the same thing when she had an epidural with her 1st child. There was a lumbar puncture hole in my spine caused by the spinal tap which would cause all my fluid from my head to drain to that hole in my spine.My brain was literally rocking around in my head with no fluid!! My friend said she had to have a "blood patch' where they take blood from you and patch up the hole in your spine with it.
    So the next day, I was worse and I called the same ER that did this to me and asked if I could come in for a blood patch because of this ,and they said "We don't do these here"!. This was Sunday morning and, as the day progressed, I got worse and went back to the ER. They gave me a binder to wear that will help close the hole in my spine and another shot of Nubaine. Monday came and I was no better. I couldn't eat because I was too sick to. My mom took me to my family doctor and I had to lay on the floor while I was waiting to be seen. the doctor said that the hole would eventually close up on its own, and he gave me stadol nose spray for headache pain. That helped me sleep, hoping I would sleep this off until the hole closed. I couldn't do anything else. My head still hurt lying down but it was nothing compared to the pain if I put my head up. It was awful-first pain in forehead, then the back of my neck, then vomiting nothing left to vomit. I felt helpless and that I would never get better and felt like I was dying. I had 2 kids under 3 to care for, which my mom had to during this whole ordeal.
    Four days later, I wasn't any better. The hole did not close, so back to the doctor I went. He referred me to a neurologist. luckily, I was able to see her that day. When she saw me and heard my complaint, guess what she said I needed? A blood patch! She couldn't understand why nobody gave me one. she referred me to an anesthesiologist at the same hospital and I got right in. I FINALLY got the blood patch. He gave me an epidural and opened my spine and said that there was A LOT of fluid in my spine and no wonder I was in so much pain. He withdrew blood from my arm and inserted it into my spine to patch the hole.
    After a 2 hour recovery, I was back to normal. I was sitting, standing, and walking with no head pain. Unfortunately, it only lasted 48 hours and by that next Friday, I was back where I started, stuck in a painful position and back lying down in bed. He gave me an emergency number to call, not the ER, but for anesthesiology. I called and he said that it can sometimes take up to 4 blood patches to stick. The hole had reopened, so he had me come into the hospital the next morning. He did another blood patch and thank God, this one took and I didn't have to come back. The pain never came back, even though I was on pins and needles worrying when it would. Within a few days, I eventually made a full recovery.
    I never had to have a spinal tap again, but if I ever do, I'm going to stress and probably have them put it in writing that if this ever happens to me again, they would treat me with a blood patch within a reasonable time, not days!
    sorry so long, I just thought I needed to share this in case anyone ever went through something similar. The ER poked a hole in my spine on accident, of course, but I went through a week of hell getting help for it.
    This was in 1995. Now, I have medical problems of a different nature. I have fibromyalgia and digenerative joint disease. I do see a good PM doctor and I am happy with him.I wish everyone on here luck. I am a newbie on this board

    Last edited by kimmark1; 03-12-2007 at 12:25 AM.

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