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First post for a long time...thoughts and opinions please guys.

Discussion in 'Support Subforum' started by Huckleberry, Nov 21, 2015.

  1. Huckleberry

    Huckleberry Well known member

    Hi...its has been well over a year since I last posted and wanted to update on my situation and also get some advice and opinions regarding my situation.

    As you may be aware my issue was SI Joint / lower back leg pain that I had been suffering from for about 4 years. I finally got round to having an MRI a year ago in October and was expecting to be told all was clear but a small 'abnormality' was discovered and this turned out to be a neuroma which is basically a small benign tumour on a nerve in my lower back.

    I was sent off to see a neurosurgeon who examined me and my MRI and indicated that it would be possible to operate to remove the neuroma but that this surgery would not be risk free and it would mean sacrificing a nerve and that it could actually just change the nature of my pain so I needed to weigh up all the pros and cons...what we agreed is that he would order me another MRI for October this year to monitor any growth act and we would reassess the situation then.

    So, I had the follow up MRI this October and basically the neuroma was exactly the same size and had not grown at all in the space of a year. I was a bit confused by this as I can't really understand how if something isn't growing (he thinks I probably had this all my life) how it can then be causing the pain...if the thing has always been there and probably had been there all my life what is the logical explanation of the thing starting to cause pain about 5 years ago when I was 43.

    I have questioned the neurosurgeon on this point but he is vague which I do understand. He agrees that my pain pathway does fit the general one he would expect of some form of nerve compression in the location of the neuroma BUT equally he has stressed that the finding could be purely coincidental and that is could be a total red herring...he has stated he has seen people with far far worse spinal nerve compression with zero pain and that it often makes no sense.

    My pain is very much that of a flare up and settle down nature and I do struggle to see how this fits with a nerve compression type issue...I don't see how this is an 'on or off' thing, the surgeon can't really comment on this either and just suggests everybody is different how they feel pain.

    It is all very confusing. I've had this issue for about 5 years and the pain has increased somewhat on the flares but it appears this is in the absence of an impingement that is getting worse. There just seems no rhyme or reason to the flares either...I could go for 10 mile hikes every day for a week with little to no problems then one day I wake up and its randomly on a flare. I have also noted that sometimes the flares do seem a little related to external things going on for example I had a huge flare up last christmas and boxing day which is the probably the worse I've ever had...I've had other flares this year but nothing as bad as that, now that is basically a year ago so what is the logic there? It makes little sense.

    Since all this started, well really over the last 8 years I have had an incredibly stressful time and have had severe health anxiety (now under some control) and free floating anxiety. I lost both my parents about 3 years to cancer in a short space of time and I gave up work to try and get myself 'sorted'. I haven't worked since then and am currently feeling alot of guilt for not having worked for such a long period (and having eaten into our saving) and also a huge amount of worry over the fact that I now need to get another job and this worries me because of my age and back issue. I am also finding a huge number of other health issues popping up. I suffered from daily tension headaches, shoulder pain and feeling spaced out for the best part of a year, this all stopped (still have the shoulder issue) about 2 months ago and then I started getting some weird neurological type symptoms similar to the ones I had about 6 years ago that I managed to convince myself was MS. This all stopped after about 3 weeks only to be replaced by both frequent urination and IBS which are still ongoing but quite mild.

    As you can see I am a poster child for TMS. I did see a TMS therapist in the UK who was sure I had TMS. This was before I had the MRI but when I told him the MRI result he still quite sure that my pain was likely to be more psychological generated than from the structural issue.

    So, I suppose I'm just a tad confused and bewildered. I'm still not fully committed to surgery and I'm due to see the neurosurgeon next April to reevaluate then. He sees me as in pretty good nick as I have full mobility and no issues with loss of sensation or feeling etc...my only symptom is pain (go figure) and he agrees my pain is really pretty atypical of nerve pain...I do take Neurotin but feel this doesn't really help that much.

    I really feel I am in that horrible grey area of not being able to buy into the TMS theory as I do possibly have a structural issue. What I do believe though is that my mindset MUST be if not causing my pain in some way feeding into is as I'm finding myself getting increasingly angry with life and my family and just feeling incredibly despondent and depressed about everything...I'm very entrenched in the 'my life is over' mindset and have totally become a victim to my body and I'm finding it incredibly hard to get out of this funk.

    I realise that if I could 'buy into' the TMS side of it then I have nothing to lose as nothing is going to happen till April/May next year at the earliest and even if my pain is structurally caused to some degree I'm sure that reframing my thoughts on it and calming down my nervous system must be beneficial to some degree. I just can't see how there can't be a psychological element to this as it just doesn't make sense with a totally structural framework.

    Sorry for the long read. Any thoughts and opinions greatly received. thanks.
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi Huckleberry, and welcome back. I'm sorry to hear of your struggles, but I have to say that as I read your post, I couldn't help but think that you have mostly answered your own questions. The only dot that you haven't yet connected to everything else is this one fact: Our brains are in charge of the pain process. Our brains also know what's going on in our bodies - they pretty much have to, right?

    So my brain gave me chronic neck pain for 20 years, which started about 5 years after a skiing accident in which I whiplashed myself - but there had been no pain at all for a number of years once the initial injury healed. I know that the 20 years of chronic pain was TMS, because after discovering Dr. Sarno (by reading The Divided Mind) that neck pain literally disappeared and has never come back except in a minor way, a few times under stress. That was four years ago. Which isn't to say I don't have any symptoms, because I have one in particular which is much harder to banish, but that's another story.

    So where the heck did my chronic neck pain come from? Answer: memorized pain pathways. Just like phantom limb pain. Or, in your case, your brain knowing that there's a little anomaly on your spine, that, with a little bit of swelling or inflammation during times of stress, is a perfect place to create some lovely distracting pain.

    So to me, your story is classic TMS. And I'm also one of those people who think that with an even higher level of knowledge and belief in self-healing, that you could shrink that neuroma on your own. There are many documented cases of spontaneous healing from serious conditions which the medical profession doesn't discuss, because they have no idea how they come about. I knew someone a number of years ago who accomplished a feat of self-healing from an inoperable ovarian tumor, and while it didn't sound easy - it took her a huge amount of will power and belief - I absolutely believe that it CAN be done.

    Good luck, Huckleberry, stick around and let us know how it's going!

    TG957, Mr Hip Guy and Lavender like this.
  3. Huckleberry

    Huckleberry Well known member

    Thanks very much for the speedy reply Jan. :)

    Before I had the MRI I was actually attempting to 'treat' it as TMS for about 3 years but this was admittedly in quite a haphazard and no committal way. What I always look back at now as quite ironic is that when my health anxiety started when I turned 40 which was 8 years ago I found Healing Back Pain about a year into it and was trying to treat all my weird and wonderful neurological symptoms and chest pain as TMS...I always recall reading it and finding it hard to accept it as TMS as Sarno didn't really touch on those symptoms as TMS in that book and almost wishing that I had back pain as this would be so much easier to accept as TMS...couple of years later and BAM! Be careful what you with for eh.

    I don't think my pain flares have got a huge deal worse since knowing about the neuroma after having the MRI but it is very true that at times when I'm hiking or whatever and I feel it tightening I play a mental scenario in my head that almost pictures in my mind the physical neuroma and it impinging etc, I do default to a very physical/structural mindset. I do then try and calm myself with positive self talk and affirmations or whatever but that doesn't seem to work....its almost like that initial thought process has done the damage.

    Like I say I've had a plethora of physical symptoms over the last 8 years and am seen as borderline somatisation disorder by my GP and also have a diagnosis of GAD and health anxiety. It is annoying how all the other symptoms seem to go and morph into other concerns but my back/leg pain just keeps on blatting away. Sad to say I can't actually think of a day that I've been totally symptom free for the last 8 years...its almost like I have to have a symptom to fixate upon which is actually the norm for a health anxiety sufferer anyway.

    There is little doubt that I do suffer from somatic amplification and catastrophise all body noise. I do therefore wonder if after having this back and leg pain for such a long period then basically my pain pathway has just maladapted itself to feel the pain that much better...maybe if I put this level of pain on somebody else it wouldn't be as bad to them as they are not so fixated on it.

    I was speaking to my wife earlier after another family day out today was pretty much ruined because of my pain (and my attitude to it) and saying it wouldn't bother me so much if i was working in a desk job earning 50K a year and that my hobby was just sat at home video gaming but the reality is I need to go out and find a job even though I'm in pain a lot of the time and that my enjoyment always came through running and hiking which is becoming increasingly compromised.

    I think the fact that my running and hiking is now becoming far more problematic is a big issue here. The surgeon stated I could not damage my back by running or whatever as my back is basically stable and secure but running in particular does cause me pain and this pain does scare me when running as I always feel it will bring on a flare....its like oh if I go for a run I will pay for it for the next week etc etc. Its getting to the point now whenever I see people out running and stuff I just get so incredibly angry and frustrated...I'm really turning into a person I don't like...full of hate, bitterness, anger and loathing.

    Like I mentioned earlier, regardless of what is causing my pain I do know I have to get a handle on it and my response to it as well as it really is no way to live. :(
  4. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, Huck. I had severe back pain two years ago, discovered it was from TMS, learned that I was repressing anger and feelings of insecurity from my parents divorcing when I was seven. I took walks despite the pain and told myself it was from TMS emotions, and healed in about two weeks. Try telling yourself your pains are from your emotions and they are not structurally-caused. Repeat that to yourself over and over as a mantra.

    Try not to envy people you see who are running. They may have TMS too and are running despite pain. Just picture yourself running with them soon, and maybe even being out in front of them!
  5. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Huckleberry,

    Reading your post, so much points to you having TMS, including, and especially the grey areas mentioned by your surgeon. You are lucky to have such in-depth discussions, and his pointed responses. My situation, before using TMS approach, with surgeons was not as good. 7 out of 8 wanted to "cut" with no real response to my questions.

    I have foot neuromas which don't cause me any pain any more. For a while they did, before I discovered TMS. Dr. Sarno describes neuromas as "not causing pain," just as your surgeon suggests/hints at in your particular case.

    If I were in your shoes, I would take what your surgeon says, combine with what Dr. Sarno says, combine with what you know about your life history, and the pain patterns, and throw myself into TMS work whole-heartedly.

    I was told my "nerve would die" because of restrictions. So I needed surgery. Not true!!!

    Andy B.
  6. David88

    David88 Well known member

    Hi Huckleberry,

    What you are describing is TMS at work. You're focused on the pain, your fear of the pain, and the restrictions it is causing you. These are all distractions.

    Ask yourself, what is going on in your life that might necessitate this distraction? If you've done the SEP or the other programs here, and it hasn't helped, it may be time to see a TMS-trained therapist. Sometimes we need help getting through our defenses. You'll know you're making progress when you are thinking less about the pain, and more about putting your life in a happy balance.

  7. tgirl

    tgirl Well known member

    Before I had the MRI I was actually attempting to 'treat' it as TMS for about 3 years but this was admittedly in quite a haphazard and no committal way. What I always look back at now as quite ironic is that when my health anxiety started when I turned 40 which was 8 years ago I found Healing Back Pain about a year into it and was trying to treat all my weird and wonderful neurological symptoms and chest pain as TMS...I always recall reading it and finding it hard to accept it as TMS as Sarno didn't really touch on those symptoms as TMS in that book and almost wishing that I had back pain as this would be so much easier to accept as TMS...couple of years later and BAM! Be careful what you with for eh.

    When I read this paragraph I just had to reply. I had the same reaction after reading Dr. Sarno's books. He seemed to keep referring to back pain being TMS and this is not what I have. Since back pain isn't my issue I find it difficult to whole heartedly accept TMS - he never mentions my type of pain. I have had a prickly sensation on both legs (moves around, but always on my legs) three separate times over the past 10 years. When it goes I away it totally goes away but when I have the sensations they are almost constant with varying degrees of intensity. I can't even wear jeans the symptoms bother me so much. Grrr... I must admit the symptoms really diminish when I am in bed, taking a bath or exercising. I have been tested extensively by the medical community and everything comes back normal.

    I can also relate to you being angry when you see people out hiking etc. I feel the same. I feel everyone is having a merry life while I am in pain.

    I hope we both get a grip soon.
  8. Huckleberry

    Huckleberry Well known member

    Thanks very much for the replies guys.

    I actually emailed my TMS therapist yesterday and he kindly called me today to discuss my situation in some detail.

    Today was the first time I had spoke with him in well over a year and he was unsurprised that the discrepancies in my pain patterns etc still remained. I explained that the MRI I had a few weeks back had shown that the neuroma had not grown at all over the space of the last year and he still remains pretty convinced the neuroma is an incidental finding on the MRI rather than something that is causing my pain. Of course, I do have a touch of the 'well he would say that wouldn't he' just because he is coming from this from a TMS agenda but it is quite telling that a year down the line I am still drawn to the TMS explanation. The therapist also suggested sending my MRI and report off to get a second opinion for me as he thinks that this may help me better accept that my pain does not relate to the neuroma. I'm hoping to hear back from him in the next week or so.
  9. sweetandsourkiwi

    sweetandsourkiwi New Member

    Huckleberry, my heart goes out to you. What a sad time you've been through.

    I've struggled with much of the same doubt (and much of the same grumbly feeling towards anyone jogging joyfully away in Spandex...don't they know how lucky they are!?) A few thoughts:

    1) Your doctor says removing the neuroma might not remove the pain. If removing the neuroma doesn't fix it, then is it possible the neuroma isn't the root cause of the pain anyway? One other hint...the pain changes, but this neuroma doesn't. If it's always sitting on the nerve, and it's the cause of the pain...shouldn't the nerve always hurt? Nerves don't just fire with movement...also, there's the statement from the doctor that this isn't the right kind of pain for a neuroma.

    2) Is it possible they found something there because they were looking in that area, and if they looked at other pain-free parts of your body, they might find little glitches? For me, I look at my horribly rolled-in mega flat feet...and the godawful wear patterns on my shoes...they look like they should really hurt...you don't even need an x-ray to see a "structural" issue...and, well, nothin'. Not a single ankle pain, foot pain, heel pain, shin splint, nothin.

    3) For what it's worth, I haven't figured my TMS out completely, but I have gotten over severe, severe, SI/hip/leg/low back pain. I never got an MRI b/c I didn't have the insurance for it. But the pain was out of this world. There was no hope in running...just turning over in bed felt like my entire back was disconnecting and breaking. When walking I would literally feel my SI joint slip. It was awful. And now it's totally fine.

    4) I completely empathize with taking time off in the wake of your parents' tragedy. One thing that's hard on my pain, though, is not feeling useful. If I get busy and stressed, it can make my pain worse, but if I get too slow...I tend to fixate on it. Is there some way you can feel useful without going back to work if you aren't ready? Volunteer to help a friend clean, soup kitchen, a little freelance work?

    5) I hit rock bottom last year, too. The frustration and anger was too much to bear, and life did not seem living when EVERY thing I love to do caused crippling neck pain (my current struggle). EMDR/Somatic therapy helped me resolve some core issues in my life that I could see clearly but not solve, and I have to say, while I am often still in pain, I also feel genuine happiness and gratefulness. I'm annoyed, but I'm not suicidal anymore. One thing my therapist pointed out is as you feel better mentally, you do more to move your life forward...it's not necessarily about forcing yourself to do anything. It's about feeling better first. Feeling better helps me cope with my pain better. Distressing over it? Made it worse. You might consider dismissing your pain as much as possible for the time being and focusing only on feeling better mentally.

    6) I've had so many weird issues come and go over the years: chondromalacia (kneecap pain...so bad...now it's totally fine), carpal tunnel like symptoms, labrynthitis (omg), random rashes...it's all fine now. I struggle with the second most common form of TMS still...upper trap/neck pain on the right hand side. All your other stuff was assuredly TMS.

    7) Have you read David Hascomb's "Back in Control?" He's an ex-spine surgeon that basically says spine surgery is rarely warranted.

    8) What solved my horrible low back pain was a "do it anyway" mentality. Sometimes it hurt, but if I physically could move, I did. At first it was a walk around the block. Then 5 blocks to the store. Then some short hikes. I gradually was able to go more, at a glacial pace that didn't feel linear at all. But I figured it hurt to a degree whether I stayed stationary or got out, so I was going to live life as much as possible without worrying about the effect on my pain. SO hard to do in practice, but that's what got it in the end.

    In conclusion, I'm still here because I have a hangup over my neck pain...it's hard for me not to believe it's from micromovements of my mouse on inflamed tissue. And I really think that's what's keeping me here. Working hard to let that go. Good luck to you!
    JanAtheCPA, KevinB and Boston Redsox like this.
  10. Huckleberry

    Huckleberry Well known member

    Thanks for the reply sweetandsour, apologies for not replying before now but have tried to take a bit of an internet break.

    You make some valid points...yep, I did read Back in Control about a year ago and funnily enough I think my MRI report is going to David Hanscomb for his opinion so that will be interesting to get his insight.

    I totally agree with you about weird issues coming and going. Whilst my back/leg pain has been a constant over the last 5 years or so I have also had to contend with a myriad of other issues. Having got my health anxiety under a semblance of control I was doing OK up to about 14 months ago but then started experiencing chronic daily headaches with a pretty constant feeling of being spaced out, detached and dizzy...the longer this persisted the more concerning it was getting and this went on for about a year and only resolved itself a few months ago. Once this went it was pretty immediately replaced with the weird neurological stuff like my legs feeling ultra sensitive to cold draughts and waking up with pins and needles in my hands every morning. This didn't last for long but now I am dealing with IBS type symptoms of nausea, bloating and my stomach making the most dreadful gurgling and bubbling sounds...its like my body just have to be generating symptoms of some bloody sort.

    As you mentioned as well I do try to stay active but am aware that I do still guard my back and leg and ease off etc when I feel discomfort...I suppose I really need to resist doing that and to push through it. Its a work in progress I suppose.
  11. sweetandsourkiwi

    sweetandsourkiwi New Member

    "It is like my body just has to be generating symptoms of some bloody sort." Ohhhhh...feel you! Good luck to you Huckleberry!
  12. Tmswarrior32

    Tmswarrior32 New Member

    You’re cured of Morton neuroma pain??

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