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New here and looking for advice

Discussion in 'Support Subforum' started by as100uk, Apr 20, 2017.

  1. as100uk

    as100uk New Member

    Hi from what I have seen so far this seems like a really great place for help and support.

    With this in mind I have signed up. However, I really need some advice before I go any further and hope you can help.

    In summary I am a 52 year old female. I have had back problems for most of my life. I have been diagnosed with osteoarthritis and mild inflammatory arthritis. In 2000 I had an episode of acute lower back pain that started when I was on the loo as a "cattle prod" (CP) sensation of pain in my lower back. I managed to get on the floor and I was taken by ambulance to hospital. Xrays did not show much and I was sent home with painkillers. I had physiotherapy, they got me doing McKenzie exercises. It took around 8 weeks for the pain to settle to a manageable level and I had continued to put up with it. I have also had chronic pain in my hands, feet, and legs, that again I managed with medication and just getting on with it!

    I had an MRI in 2011 after continuing back pain and was told I had a broad based disc bulge at L5/S1.

    Since around late December 2015 I noticed that my back was getting increasingly stiff and I had been having severe pain in my legs at night, not sciatic pain (which I had once in 2000) but pain that if I touched my outside thigh (for example) it was really tender. This has carried on on a nightly basis until the present day, I have not had a full night's sleep in over a year.

    By the summer of 2016 my back was so stiff I literally could not bend at all. Then, in July 2016 we moved house and I had an episode of lower back pain which has not gone away...

    July 2016, I was getting into my car to drive home from shopping and bam I got an almighty CP sensation, the same as in 2000. My husband was with me so he drove and I managed to get into the car and we went home. I tried to get on the floor to do McKenzie exercises but could not even get down on the floor. I went to see my GP (who was a new GP) and was told to exercise (she did not know my history). I booked some private physiotherapy which I did for around 6 sessions and tried to do the exercises at home but it made the pain worse. I insisted my new GP refer me to the rheumatolgist (as I had previously been seeing one for OA etc), he reluctantly referred me. This was in September.

    By end of October I had heard nothing so rang the hospital appointments department - they said it was at least a four month wait to be seen. I booked to see the rheumatolgist privately (using my very small amount of savings). I saw him in November. He said he thought I had ankylosing spondylosis - I had no movement in my spine and reduced chest expansion. He said to confirm the diagnosis I needed an MRI. I said I was not able to fund this privately so I had to wait for my appointment with him to come through on the NHS so that he could send me for one. I saw him at the end of January 2017. I had the MRI in February 2017. The MRI showed severe degeneration at L5/S1 (practically bone on bone at this level), canal narrowing, and Modic type 1 changes. The rheumatolgist said it was not AS and that he could not do anything but refer me to the orthopaedic consultant for his opinion/maybe surgery and pain management clinic.

    I have been trying to find ways of helping myself for months. I have tried exercising but any movement seems to bring on the CP. Turning over in bed at night also does this. I still have leg pain - severe at night, milder during the day.

    I am a medical/legal secretary so sit most of the day.

    I cannot stand for long and when I walk my back/buttocks/thigh area feels "weak". I am having a course of dental treatment - I cannot lie down in the dentist chair when they do it automatically from a sitting position. She has to put the chair in the reclined position and I have to log roll on to it. I have had to cancel appointments several times as I did not think I could even make it to the dental surgery.

    It is affecting my whole life.

    So, could my diagnosis be causing my pain, could it be TMS? There is obvious structural damage on MRI and I wonder if TMS is only when there is no structural damage but pain despite this.

    I am willing to give anything a try but before spending money that I do not have, even on a book, I would like to know whether it is likely to help in my situation.

    If it was felt it would help, if there was just one book out of the many to buy (as I can only afford one) which one would it be? Sadly, I have no more money to see anyone privately the fees are just so high :-(

    Thank you so much.

  2. Kylin Foster

    Kylin Foster Peer Supporter

    Sarno! The mind-body prescription is great but he has a book on just back pain called Healing Back Pain. I haven't read that one but Sarno has helped so many people heal and I realized so much about my self reading his book.
    I wish you happiness in life and on your healing journey. Hope this helps
  3. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Welcome A,

    It is important that you spend a few bucks and read Dr. Sarno's work. Or perhaps use a library. When you have been in pain and worry about the pain for so long it is understandable to be cautious, and want to be certain about where and how to dig into this idea of TMS.

    At the same time, I urge you to simply dig in and educate yourself. MRI anomalies, for instance have been shown in most cases to mean nothing in terms of causing pain. You need to explore the Wiki at the upper left top of the page here, linked, for many free resources too! Observe your hesitancy, fear of not being on the right path, and take some steps. It will become more and more clear to you. I was scheduled for nerve surgery, and I took the Sarno route instead, never believing it could work in the beginning ----and have had fantastic results.

    Andy B
    Back-To-Golf likes this.
  4. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    That's GOOD, no proof for anything structural.

    Dr. Sarno provides evidence showing people's imaging, with identical disc bulges, some having pain and others with none.

    Dr. Sarno says evidence of "damage" on imaging, being blamed for the pain, can be normal structural anomalies--"gray hair of the spine"--harmless--benign.

    If your funds are low you can read at this site and it is a wealth of info. You can read the "SUCCESS STORIES" of others for inspiration. The most popular book for back-pain is "HEALING BACK PAIN", in the states you can get used copies for a penny and $3.99 shipping.

    What is shocking is under your NHS system how long it takes to get an appointment for imaging or to see a specialist. In the US, you can get an immediate MRI in a doctor's office and a referral to a specialist the next day. It is unconscionable that a government allows its citizens to experience excruciating pain for so long! It is totally unnecessary, even chiroquackters offices in the US have immediate imaging--whether the dx's are accurate is another thing.
    Last edited: Apr 21, 2017
  5. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Last edited: Apr 21, 2017
  6. as100uk

    as100uk New Member

    Thank you Kylin, Andy, and Tom for taking the time to reply, much appreciated.

    Tennis Tom - Xray was in 2000 (yes it did not show much at the time and I was only in severe trouble for 8 weeks, and continued on). 1st MRI 2011 (by this time back was stiff and pain was becoming chronic). Next MRI 2017 (after being in severe agony/stiffness most of the time since July 2016) . So, there was not much going on in 2000 and what I did have I could cope with. Disc was "bulging" in 2011, again carried on as normal, in fact was travelling around the world teaching. Now, 2017 - no disc left, bone on bone, am in almost constant agony. This was my reason for asking whether this could actually be the cause of my pain or TMS. I looked at the stress list and my score was "risk of illness is moderate".

    Anyway, I am open minded and willing to give anything ago before surgery, which seems to be the way the doctors have me heading. I have ordered the kindle version of Healing Back Pain and will start reading this evening. I will also research online as much as I can about this.

    Our NHS is in a state - my current agonising episode started in July 2016, I saw my doc straightaway and he referred me to be seen, it took until January 2017 to be seen and then Feb 2017 to get an MRI. The decision to refer to orthopaedic surgeon came just now in April 2017. The wait will now be another few months to be seen.

    Thank you all again x
  7. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    Thanks for the reply, what's telling is that when you were in agony, the imaging did not show much going on. It seems it should have shown something structural if it were that. The good news about the length of time it will take to see an ortho is that you will have time to learn about TMS. Dr. Sarno says, "Surgery is our best PLACEBO."
  8. Huckleberry

    Huckleberry Well known member

    I feel your pain regarding the NHS. I have to see a consultant a couple of times s year and get scheduled for a yearly MRI but the whole thing is such an ordeal. I think the NHS is great for accidents and the like but for chronic illness and conditions then it becomes a real battle...it actually seems to conspire to make your situation worse.

    From my experience what I would say is that it is highly beneficial to become responsible for your own care...yep, trust doctors and specialists to a point but also be aware that they work/think/diagnose within pretty tight and confining frameworks.

    Good luck.

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