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***25 Years Chronic pain, anxiety, fusion, TMS. Low back pain again after 20 years pain-free!

Discussion in 'Support Subforum' started by Kerrj74, May 13, 2017.

  1. Kerrj74

    Kerrj74 Well known member

    Just joined forum tonight after visiting for months. So here is my story. It is VERY long, but nobody is making you read it! I believe the details are all very relevant to my complete chronic pain story.

    I am a 43 year old male with a long history of continuous health issues for the better part of the past 25 years of “adulthood”. Only recently have I realized that these might all be related and the result of a deeper stress/tension induced psychosomatic issue. I have read 100’s of similar stories of people with “TMS” or other stress induced disorders over the years, and I believe my symptoms and traits perfectly match the typical profile.

    Summary of my personality traits: perfectionist, overachiever, people pleaser, want to be liked, want recognition/approval/validation, chronic worrier, anxious.

    Probable sources of unconscious anger & fear: years of constant, relentless worrying about career and job security, afraid of failing in my education or in my jobs, fear that work is too hard and I won't be able to handle it, fear of losing my loved ones, guilt/shame, messes/disorder (neat freak), and frustration over my chronic health issues.

    At the end of this, I will talk about my latest issues and current battles with all of this, but first, here is a summary of my history that may put things in better context:

    1974-1992: Childhood through end of high school. Perfect childhood, parents, family, and middle class life. No traumas- physically or emotionally. Driven, perfectionist, afraid to fail. Graduated 2nd in my class of 300 students in school. Put a lot of pressure on myself to be “the best” and make everyone happy and get praise and admiration from people.

    1990’s: Developed allergies. Controlled by shots & medications. (mold, pollen, dust)

    1992: 18 years old and started college. Chemical Engineering student and member of rowing team. Difficult courses and studies, and very busy schedule with sports. Started to develop constant sore throats and “sinus infections”. Many months of every kind of antibiotic. Always sick.

    1993: Had tonsils removed. Sore throats were better, but still always getting sick.

    1993: For 6-9 months had what was diagnosed as carpal tunnel syndrome from one really long day scooping Italian ice non-stop for 10 hours in my summer job.

    1993/1994: A few months of hemorrhoids.

    1994: Sinus surgery. Stopped getting sick as much.

    1994: After feeling a “pop” and a jamming feeling in my lower back while on a rowing machine one day, I had an “injury” and back pain for the first time in my life. Until then, I was in great physical condition with strength training, running, and rowing almost daily. From that day, I developed chronic low back pain which lasted 2 miserable years.

    -Pain was in lower back. Mostly on left and right sides of spine in the small of the back in the boney parts around the hip/SI joint areas. Sometimes pain would be bad in the center and hurt to touch the spine, but also moved side to side throughout the day. Pain never went into legs or any numbness/tingling/burning. It was a constant, dull, but torturous aching. The pain was the worst when sitting. I couldn’t sit for a minute. I spent two years of college with an ice pack on my back to get through class to numb the pain. It also hurt to stand for too long. The only relief was walking or lying on my back, but even that hurt to some extent.

    -The only thing that helped with the pain was ice (which just numbed it temporarily) and Ultram (tramadol) which I lived on like candy for 2 years.

    -I had X-Rays, MRIs, CT Scans, Nuclear Bones Scans, and went to probably 8 different co-called “best doctors” in FL and NJ. Nobody could find anything wrong on the images or exams. Best they could say was “soft tissue” inflammation or strain.

    -I did months of Physical Therapy with stretching, core strengthening, walking, stairs, massage, heat/ice, and TENS unit.

    -I tried acupuncture (at two different places) and 3 or 4 different chiropractors in NJ and FL.

    -Nothing ever helped and the pain was 24/7 causing so much rage and frustration, depression, and hopelessness. I wanted to die every day. It was so hard to go to class all day, study Chemical Engineering, and my life (which was supposed to be full of possibilities) was upside down and miserable.

    -Cortisone injections didn’t help, nor did any other OTC NSAID or Rx medicine.

    -I did meditation and self-hypnosis.

    -Found out about Dr. Sarno and TMS, and read all of his books at the time, and was 100% convinced I had TMS! As an Engineer with a logical, rational mind, it made perfect sense to me. Unfortunately, I was just unable to undo the pain even the slightest bit.

    1996: A “so-called” top in the nation spine surgeon in North Jersey (Dr. Casey Lee) said my L3/4 disc was destroyed. He said I probably broke the vertebrae above (or below?) the disc when I “injured” it that day, and the broken bone probably destroyed the disc. Nothing bulging or herniated, but rather he said the disc has small nerves in the annulus and that was causing the pain which was “referred” to the area a few inches below it in my back. He performed a discography(discogram) the confirmed his diagnosis. For the first time I had hope that someone figured it out, and I was confident this was the answer. He proceeded to perform a discectomy and interbody spinal fusion (no metal, just hip bone graft). I had to take off a semester from college and took about 4 months to recover before I went back to finished my final semester before graduation. The surgery was a success by every measure. In fact, recent MRIs this year (2017) were reviewed by a chiropractor, and he said that he and his partner have reviewed 1000’s of MRIs over the decades, and this was by far the most impressive fusion they had ever seen!

    1997: I went back to college after the recovery, and slowly rebuilt my strength and was in great shape again. For the next 20 years, I was pain free (for the most part). I definitely thank Dr Lee for the surgery. It was a success both medically and for getting rid of my pain. I was pretty much able to do anything, but I was always cautious not to lift anything too heavy. I did however lift weights regularly for years with no problems.

    A few times over the years, I would have the occasional back spasm or muscle strain that would go away in a few days. No big deal.

    A couple times over the years I had pain very similar to the pain that I had prior to my fusion surgery, which made me wonder- how could that be possible? How could I have the SAME EXACT pain in the SAME EXACT location if the problem (the disc) was removed? After a week or two, I got worried, and I immediately read Dr Sarno’s books and people’s reviews on amazon all day for weeks, and I was convinced it was TMS. Eventually the pain went away. That had me 100% a believer in the TMS diagnosis now. This made me think I probably never even needed surgery. Was it just a placebo? I couldn’t change the past, so I didn’t dwell on that thought to much.

    2001- 2008 – I had a lot of career changes and stressful jobs during this time. Always still trying to be perfect and successful (like I was “supposed” to be). Always fearing losing my job as the main income provider in my family (with a wife and 2 small boys). I was in the computer/tech industry which was constantly downsizing and laying off people every few months. Lot of worrying and stress daily from that.

    2006/2007: After 15 years of contact lenses, I developed Dry Eye Syndrome and have never been able to wear contacts since.

    2008: Fell into a severe depression with anxiety. Spent 4 months on long term disability. Tried every antidepressant, anti-psychotic, anti-anxiety medicine in every class of meds. Eventually got better and returned to work. Been on antidepressants ever since then.

    2010-2012: For about two years, I had a constant strange stomach “tension” or nervous/butterflies feeling. Nothing would relieve it. No medication or therapy. It was not painful at all. Just a strange feeling of nervousness in my stomach which was distracting and uncomfortable. It felt like nerves. Doctors said it was not a digestive issue.

    2012-2014: For no reason, out of nowhere one day, I got terrible elbow tendonitis pain, and the stomach issue went away! I never did anything to injure the elbow. Pain was awful. Couldn’t even lift a gallon of milk. Did a few months of PT everyday with no improvement. Spent two years getting many cortisone shots in my elbows. Elbow(s)? Oh, did I forget to mention that the pain would go away after a cortisone shot and then my other elbow would hurt just as bad a couple of months later!!! So I would need a shot in that elbow! This went back and forth from elbow to elbow, shot after shot for almost two years. Sometimes they would work, and sometimes not. Then one day the pain just stopped and never again!

    2015: Lots of uncertainty about my job (my company was closing locations and might be forced to move away from our families). I developed bad anxiety with shaking arms and legs when I would lay in bed in the morning. Never had a panic attack, but just chronic general anxiety. Wound up out of work again for 4 months in a treatment program on long term disability again.

    Dec 2015: Bad hemorrhoids again.

    2015-2016: Developed IBS (Irritable Bowel System) with diarrhea. Many docs, colonoscopy showed a perfect colon, yet now all of a sudden I had constant diarrhea for a year! Put me on medicine (Viberzi) which helped a little.

    2016: Spent about a year of intense job searching because the end was near at my job. No luck. Very discouraging. A few months later in mid-2016, the anxiety got really debilitating, and once again, I was out for 4 months in a program on disability. I should mention that for the past 8 years since 2008, I saw a great psychiatrist and therapist for the depression/anxiety. Did a lot of CBT/DPT therapies. Meditation, deep breathing, mindfulness, etc. My doctor and therapist and I believed that the job environment was toxic (60+ hour weeks, high stress because it was in nuclear power, and the impending thought of having no job in a couple of years). The belief was that if I got a new job, the anxiety would go away.

    November 2016: Finally got a new job!!! Was SOOOO happy for once! I felt hope and relief. I felt like my problem was solved and I could finally relax and be happy for the first time in a long time!

    December 2016: Started the new job. It was great. Great people, boss, the type of work, hours, etc. Couldn’t ask for anything more. Only downside was an increase from 20 mins to 60 mins each way in commute, but I was willing to live with that for all of the positives that came with it. Not a problem. I was a few weeks into my new job and all was wonderful for once! My job is not strenuous. I just sit at a computer all day in a nice ergonomic chair.

    A few weeks into the job, before I could barely enjoy the relief of years of anxiety, and my low back started hurting. I didn’t think anything of it. Started a little achy. Felt like I might have just strained something from bad posture as I was leaning forward and twisting to the side a lot reading and typing a bunch of reports for a few weeks. A few weeks later and it was very sharp and “spasming” on the lower right side. I could barely bend down to tie my shoes. It hurt to even breathe. I thought I must have done something serious, but how? I did nothing to injure it!! I was able to do so many physical things prior to this with no pain. What caused this?

    Oh, by the way, I forgot to mention that the IBS that I had every day for the past year miraculously stopped ever since the back pain started! Another ailment/pain replaced by another once again!

    So I started the doctor/treatment/medication routine. A few weeks later, it developed into more of a dull, nagging ache. Moved from left to right sides throughout the day. I would describe it as having two dull knives stuck into my low back all day. Pain never goes into buttocks or leg. No numbness/tingling. Unbearable pain to sit for any period of time. Relieved only when walking and lying on back. In the beginning, heat helped. Then it no longer helped. Then ice helped numb the pain for a few months. Now neither really help.

    I spent the next 2 months reading every TMS, mind body syndrome book, audiobook, website, testimonials etc. I was convinced this was TMS and nothing really wrong. Unfortunately nothing changed. I believed 100% in it but just like back in 1994, no luck. I immerse myself in the TMS readings all day and night, buy into fully, but never helps. I want it to help so bad, but I never feel any sign of relief to give me hope.

    Went to 4 MD’s and chiropractor in the 6 months since Dec 2016. An MRI showed L2/3 disc degeneration and a couple of “mild” disc bulges. Initially tried OTC NSAIDs, Flexeril, methylprednisolone, ice, heat, bed rest, pain ointments/creams, etc. Tried yoga/stretching. That didn’t help, and one day I bent and twisted the wrong way at Yoga, and got a really sharp jolting pain, and never went back. I have tried about 5 different lumbar support pillows/devices at work, in my car, and at home. They don’t help at all.

    The first Spinal Orthopedic Surgeon at a reputable, established Ortho/Pain center basically said it is probably soft tissue strain or an annual disc tear (but never even said which disc). She sent me for PT. I tried physical therapy – core strengthening, stretching, TENS, etc. No improvement.

    I then tried a supposedly reputable Chiropractor with decades of experience and he said I had two bulging discs that were pressing into nerves and causing the pain. He was 100% sure. So he started me on a fancy “VAX-D” Spinal Decompression table. I went every day for 30 mins each for about 4 weeks (~17 treatments) along with some PT there afterwards (core strength, massage, TENS). No relief at all, so I stopped going.

    This was really affecting my ability to work or be useful at home to my family or around the house. I have spent every waking moment at home on the couch or bed or floor.

    I went to a Physiatrist (gave me Ultram, Flexiril, Valium) and said probably soft tissue strain. After more weeks, no improvement. He sent me to a “top” Spine Pain Specialist MD. He scanned the MRIs and a quick evaluation and said it is most likely your facet joints (arthritic). Sounded 100% sure that was it. No question. He said we need to inject anesthetic into the medial branch nerves of the vertebrae (a medial branch block). If the pain was reduced significantly enough for a few solid hours, then it would confirm that the pain is indeed from the facet joints and the next step would be radiofrequency ablation (RFA) where they would burn those medial branch nerves to provide 3-18 months of relief until they grown back. He did the lower 3 lumbar/sacral vertebrae one week and then the upper 3 lumbar vertebrae another week. The first procedure seemed to provide some relief for a few hours, but second procedure didn’t help at all.

    That brings me to this past week at my follow-up again. He said they need to repeat the first procedure again!!! This was needed to confirm it works (that the relief I experienced wasn’t a fluke) before proceeding with the nerve ablation. This seemed to be his practice of ensuring success but also apparently required by my insurance (BCBS) before they will cover the ablation procedure. He said if it is confirmed, then an ablation would be recommended. If not, however, then he said it is probably the L2/3 degenerative disc causing a “referred” pain to the area a few inches down lower in the back where I feel it. That would require more consults with a separate surgeon, a discography (discogram) diagnosis procedure, and then potentially a surgery (fusion or artificial disc replacement). I do NOT want any of that!

    So here I am today in May 2017. 6 months of the SAME EXACT pain as 23 years ago! Just like back then, only ice, laying down, and Ultram provide any relief. Lately the Ultram (50 or 100 mg, 1-3 times per day), or the ice, or lying down don’t really help anymore. I try not to take the Ultram because I don’t want to go down the opioid addiction/narcotic path. I may be take 1 to 4, 50mg pills a week.

    I am 3 weeks away from that 3rd nerve block procedure. I am frustrated on how this has dragged on for 6 months now with NO IMPROVEMENT. I can’t believe I am still in pain. How could this be? The pain consumes me every waking moment (and even disturbs my sleep at times lately). Every once in while I have a better hour or day, and think I am turning the table, but then the next hour or day, I am back in the normal state of pain and misery. I really think if I didn’t have a family, I would not be alive at this point because it seems so hopeless and the thought of living the rest of my life with this constant pain is unthinkable. Because I love my family, I decided to be positive and beat this. I have to. I started a strict self-PT program this week. Every day walking 20-30 mins, and 10 mins of core strength and stretching.

    I go back and forth lately between thinking something must be really physically wrong to cause this kind of 24/7 horrible pain vs. the TMS psychosomatic pain theory. I don’t know what to believe. I am currently re-reading everything by Dr. John Sarno, “The Great Pain Deception” by Steve Ozanich, and now “Crooked” by Cathryn Jakobson Ramin, Dr. David Schechter’s work, etc. They are all AWESOME books and I believe they describe me on every page. I just don’t know how to undo this? Are my neural pathways so strong now that I cannot reverse this after 6 months?

    So here’s why I think I have TMS… 25 years of constant pains or sicknesses. Always something getting my constant attention on my body- instead of letting my unconscious fear and anger surface which would be emotionally painful to face. There has never NOT been something wrong with me since I became an “adult”. It all started in college when life got stressful. One ailment moves to the next, and the next.... Pains move from arm to arm, side to side in lower back. How can a real physically induced problem do that? Either something is hurt or it isn’t.

    It is frustrating seeing 5 different medical professionals/doctors and getting 5 different diagnoses! It seems like they just guess and try things until something works. I feel like a guinea pig while they just try to make money and push meds and procedures on me. I am sure they are well-intended, but it doesn’t feel right. Each time I had confidence in their diagnoses, but each time they failed to result in any improvement.

    I find it hard to believe that my discs are the problem. I have seen WAY WORSE spines on MRIs! The two discs are barely bulging (probably how everyone’s discs look over 20 years old), and one degenerative disc which wasn’t even that bad from what I have also seen. Even the first two docs or radiology report said NOTHING about the discs!

    So I’m really wondering now where to go from here. I am reading all these books and believe so much in TMS and feel like that has to be it. However, I just don’t know how to change it? I would love a TMS expert or Mind-Body Doc to read my story and let me know what they think. How do you ignore the pain and tell yourself nothing is wrong when it hurts you 24/7? How do you unlearn that and reverse that? Would love to hear from you all. Thanks for your time. james.e.kerr (at) comcast.net
     
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  2. Jules

    Jules Well known member

    This could have been my story, except for I'm a female and have myofascial pain crap instead of back pain. This is classic case TMS and I know the experts here would agree. Have you ever seen a psychotherapist or TMS therapist? It wasn't until I got really uncomfortable with emtoional and physically past traumas that I really caught on, and even now with a separated shoulder of four months duration with loss of range of motion and thoracic outlet syndrome on the other shoulder of six months, I still get niggles about whether its strictly TMS. I do believe your central nervous system, i.e., parasympathetic, autonomic systems can become sensitized. Basically, you expect pain so you get it (Pavlov conditioning)

    Pain is weird. I tend to have less pain when I'm challenging it - exercising, cleaning, distracting myself away from negative thoughts. In fact, with the TOS on my right shoulder, I was in p.t. for 3 months, but it was repainting and redecorating my home that eliminated the pain, mostly. When I'm doing absolutely nothing, such as when me and hubbs went to the movie on Friday, the achingm pins & needles sensation reared its ugly head. Ugh!!

    I find if I tell my brain repeatedly, sometimes numerous times a day, there's no reason for the overprotection and to calm the nervous system, it helps. Basically, our brain has gotten into a pain habit we need to break. Believe me, I have been doing TMS work for 5 years and I'm still in pain. At this point, its time to Break the Habit of Being Yourself (good book btw) with negative and worthless thoughts and beliefs, such as "I'm never going to get better," "Why isn't this working?" et al, which I have done plenty of on here. My therapist gave me two thoughts to focus on that may help you:

    • Is it true?
    • Is it helpful?

    Get off the merry go round of doubt and what ifs and change the way you think about and perceive pain. Pain really is only an alarm system. Once we calm that down, the pain will lessen and even go away; but we have to have something to replace it with, because pain will always be felt - somewhere.
     
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  3. Kerrj74

    Kerrj74 Well known member

    Thanks so much. I have the same experience with the pain. Seems like the busier and more focused I am, the less it hurts. I have a hard to seeing past the pain, so I stay stuck giving it my full attention and importance instead of somehow ignoring it until it fades away. I hope you get better. Thanks.
     
  4. HattieNC

    HattieNC Well known member

    I think I have a unique perspective on your situation since last June I had RFA performed on my left SI joint. Prior to ablation, I had the required diagnostic block too. The diagnostic block was sort of a joke because after the procedure I was told to take 10 steps to see if I had a reduction in pain. The placebo effect kicked in and I told them "yes, I'm pretty sure my pain is reduced." I was under a lot of pressure to go ahead and schedule the RFA because my insurance was changing to a different company, plus I had already met my high deductable and copay for the year. I'll be happy to private message you with the details of the procedure, but the condensed version is: it was very, very, painful since I was given no pain medication during or after the procedure (only a numbing agent) and most importantly....it didn't work. I didn't know about TMS last summer or I would not have subjected myself to this procedure (or to the 7 epidurals I endured prior to RFA). This is my personal experience. I know there are lots of folks on various message boards that claim fabulous healing after RFA. Ultimately, the decision is yours. Best of luck to you whatever decision you make.
     
    Last edited: May 16, 2017
  5. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I did skim your post and noticed that at your job you sit all day in front of computer. Have you tried one of those desk things as seen on TV that allows you to stand at your desk? I think the worst thing we do is be still in the same position for hours on end, magnifying discomfort that morphs into TMS chronic but benign pain. We have not evolved since the invention of the computer a few decades ago to stare at them hours on end without some occasional movement without stiffening up-- and then that stiffening up being dx'ed by the medical/industrial complex as a "condition" that needs treating by throwing $$$'s at it.
     
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  6. Kerrj74

    Kerrj74 Well known member

    Thanks so much HattieNC! I appreciate you sharing that with me.
     
  7. Kerrj74

    Kerrj74 Well known member

    Well said Tennis Tom! I completely agree. Actually, standing hurts too. I try to walk around though as much as possible. Thank you!
     
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  8. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Try learning headstands, the practice of a senior yoga practitioner should be 70% inversions.;)
     
    Last edited: May 16, 2017
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  9. lexylucy

    lexylucy Well known member

    Thank you for your post. I really relate to those years of chasing the dragon. It was nice to remember. I feel so much better now.

    My advise is this: do some writing about those college years. Remind yourself you don't have to be that perfect person anymore. You can be yourself. Anyone who falls out of your life as you embrace who you are is not needed.

    I know in the beginning it is like jumping off a cliff. Faith. Faith that you WILL fly.
     
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  10. Kerrj74

    Kerrj74 Well known member

    Thank you! Great advice.
     
  11. karinabrown

    karinabrown Well known member

    Hi Kerrj74,

    Yes can relate to your story a lot.
    Different pains (had the si joint problem too but that's gone : took 2,5 years ) but also series of issues. Psysical small issues who where al 'liveable' ( did suffer from time to time with anxiety and depression ) untill 4 ,5 years ago, than the psysical stuff became really a huge problem . Started with the si joint after that footpain till this day. Combined with other stuff that comes and goes.

    What strikes me in your story is your need to explain every detail. I have that urge too. Maybe our personality?
    But more important : you are certain tms is at play. That's the same for me : absolute confinced that stress is causing me psysical pain. And that this is the biggest problem. But : for me knowing this 'truth' have not been enough so far. Read many times that believing in tms should ' do it ' Well maybe for some not all.

    The fact that 'its only my brain' doing this, was not really a comforting thought to me strangly. Not a relief.
    Really changing scarry thoughts and tension while in pain is not that easy.
    Even if you do know that is a huge part of the problem. So knowing is one thing , being able to do something good' with it and change it is something else.
    Personality traits you have for years and years are not that easily to 'break' i guess..
    But many good examples here , working on it and reading here brings some hope and insights

    Karina
     
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  12. mouser

    mouser Peer Supporter

    I got an RFA last Monday. While I believe in the TMS diagnosis completely, I had hoped frying those nerves would at least give me some relief so I could get moving again. The two testing procedures killed the sciatica pain at least. I just wanted to block the brain's pain signals. Well, for me, it lasted a week. By the following Monday the knife was back in my right cheek. :(
     
  13. Kerrj74

    Kerrj74 Well known member

    That stinks. I'm so sorry. I know how frustrating it is. Hang in there.
     
  14. mouser

    mouser Peer Supporter

    Thanks. I intend to spend the summer working on my brain and getting help to do that. All the reading and journaling I have done has not helped yet. Time to
     
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  15. Kerrj74

    Kerrj74 Well known member

    Hi Karina. Yeah, the details is definitely a personality flaw with me! It is useful for some things in life, but probably a perfect example of the type of person who is prone to TMS! I Just wanted to get it all down on paper because 1) it helps me to step back and see my entire health history in the big picture in order to reinforce that this must be TMS, and also 2) to help others see something similar with their own experiences and relate. I know for me it helps to read about people just like me. I figured the more detail the better.

    I agree, the hardest part for me is changing. I'll go months 100% convinced it is TMS, but then when nothing gets better, I start to shift back to the structural belief. It is also so hard to mentally get past the pain. I feel like if I could just get some relief then I could build on that and get some momentum in the right direction, but it is difficult to get that ball rolling when it hurts 24/7.
     
  16. karinabrown

    karinabrown Well known member

    Hi Kerr,

    I did find some relieve for the footpain, but only untill i started doing other things. Started to study for a degree to get my mind of why , how and ifs ' and that did work!
    I think things only started to shift for me when i decided to make a change.
    Decided to keep working' on the pain (i mean : trying being more active , and explore feelings etc ) but more part time and put main focus on something else. Like how to be happier dispate te pain. And for a part it worked so far. Not enough but a lot better than before . Now still working on the rest.

    Greetings
    Karina
     
  17. Kerrj74

    Kerrj74 Well known member

    That is awesome!! :)
     
  18. karinabrown

    karinabrown Well known member

    What is your strategy so far ?
     
  19. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I had one too about a year ago, it sounded good on paper, but no results. But did buy some stock in the company and it's been doing OK.
     
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  20. Kerrj74

    Kerrj74 Well known member

    Just trying everything... exercise through the pain, tell myself constantly that this is TMS and nothing is really wrong with me, and try to distract myself from the pain. It hasn't worked yet after 6 months of constant pain. Supposed to get another medial branch nerve block in 3 weeks and then possibly nerve ablation. I am trying to find some bit of pain reduction so I can cancel all of that.
     
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