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Questions about Meds and Mind-Body treatment

Discussion in 'Support Subforum' started by mouser, Oct 19, 2017.

  1. mouser

    mouser Peer Supporter

    I started treatment at a pain clinic that is supposed to treat pain as a mind-body issue rather than a damaged body issue. I was actually sort of excited to start after 3 years of failed spine clinics. Since last March after 2 falls, I now walk with a rollator, before that, a walking stick. I have deep hip pain and low back pain in both sides and sciatica/piriformis syndrome on the right. The right leg buckles a few times a day while taking the Norco. It is way worse after it wears off.

    My question is in the last paragraph if you want to skip the story...

    When I called at first to inquire about their treatment, the gal who answered assured me enthusiastically they could get me off the opiate. I thought it was odd that this was her first thought. I asked if they could help my pain and she said, yes, that too. I asked how long it usually took (knowing that we are all different) and she said about 6 months is average.

    So I started in. The Nurse practitioner I saw first said that opioids were very bad and that there were so many better alternatives. She named a bunch that I had tried and they had failed. She went on about long term opioid use and all the long term effects. To be honest, I didn't care about that. I don't need to be scared straight, I wanted to address my pain so that the opiate issue becomes irrelevant.
    She prescribes lidocaine gel. I fill it on the way home and look it up on the internet when I get home. It is topical and treats skin issues. My pain is deeper in muscle and bone. Next time I see her she asks how the gel is working and I say it is a topical and can't help. She says it takes about 6 weeks to work. (at this point I don't know if she is pushing the placebo effect or what) I use it for a burn I get, and the bruises I get from nearly falling all the time.

    So I also begin 'restorative' PT and seeing their psychologist. The restorative PT assumes I do not have a damaged body and that movement, stretching and strengthening are good and I agree. I visit the therapist and talk about my fears and how they feed the pain. We do some EMDR which has worked for me in the past. She gives me some meditations. All good.

    Now three months later, for them, it is time to start reducing my pain med. I take 3 Norco 7.5. I had taken 3x5.0 for a couple of years til I fell in March. I have never had anything to help me sleep nor any Norco for pain at night, which I have. My pain is the same as the day I arrived except with some deep breaths and relaxing my anxious thoughts, I can can bring down the worst of the pain. The baseline remains the same. They reduce my script from 3 to 2 per day. I cut them in half and take a half every 4 hours. Still nothing at night to sleep.

    I visited the therapist and discussed my concerns with lowering the pain med when I wasn't any better. I asked how to get past the fear of falling when I HAVE fallen and my leg gives out daily. I know fear feeds pain, but my fear of falling is real. But I am very careful after my 2 falls in March. I tell her I want to find exercise like swimming, something where I can't fall and she likes that idea. She suggest I see her more but when we are done, the next appt with her that is available is over 3 weeks away.

    The next PT appt, he asks how it's going and I say ok, but more pain and the weak right leg is worse and gives out more. (My leg went weak as I came in and I gasped a bit as I caught my balance) It is harder to move. He says I need to keep moving (yeah) and to stop scaring myself when my leg gives out. (???) We do some some stretches and walk. He always says I am walking better than ever, which I know is meant to be encouraging, but I know this time I was limping and relying in the walker more. As I leave he is telling me they are not meaning to be mean by taking away the pain med and I tell him if all I wanted was to be off the med I could stop myself, but I would also stop moving. I am here to fix my pain.

    So, with all that info, (or not) what is the usual protocol for getting rid of TMS pain? Does cutting pain meds make the body lower pain in response to lack of medication? I feel like I am not just whiney because it hurts, but that I am a fall risk. My fear has increased and this is not helpful in reducing pain. I do think their intentions are good, but wonder if they think getting off the Norco is the highest goal no matter how I feel?

    So for anyone who has gotten better, how did the reduction and elimination of the pain medication correlate with the reduction and elimination of pain?

    Thanks
     
    Last edited by a moderator: Oct 21, 2017
  2. mouser

    mouser Peer Supporter

    So is this a stumper?
     
  3. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hey there mouser - this may be a stumper for many people. I'm afraid that I can't answer it myself, because I wasn't on any meds. However, it's a really important topic, and many of our members DO have experience with meds, and I would like to see some of them try to take this question for you.

    And let me say - this clinic experience sounds very frustrating. I have to agree with what I think you're sensing, which is that they don't really seem to know anything about TMS conditions. I also don't think I know, or remember, whether you've had a specific diagnosis? Your symptoms sound kind of like fibromyalgia - a combination of pain and neuro? I might be wrong about that - I was never diagnosed, although back in 2011 I had some of the general tenderness (such as in the collarbone area) that is associated with fibro. Along with lower back pain, frequent sciatica, shoulder pain, neck pain, dizziness, digestive issues, extra heart beats, headaches, shaky legs, and vague neuro stuff. Let's see, did I miss anything? :eek: I kind of go back and forth with shoulder pain, and the dizziness comes back with stress, but in general, I feel like I'm 90% healthy most of the time, with a few regressions now and then.

    ~Jan
     
  4. mouser

    mouser Peer Supporter

    Thanks Jan, I see so many good outcomes, sometimes after months or years, but still, 90% relief give or take would be great!

    Well, I do have MS, but mildly. I was in a clinical trial for about 10 years that just ended but had very little progression or activity in all those years. Back pain started over 3 years ago with a strain. The first spine doctor did an MRI that showed bulging discs but no pinched nerves and started shots that didn't work, got frustrated, blamed the MS and sent me to another clinic. The second clinic just kept pushing any billable procedures. They screwed up a lot too. When I started refusing shots, the woman I saw started talking about a spinal stimulator implant. I was not keen on it as it has a 50% chance of reducing my pain only 50%. Norco was doing that. She would not hear of it and insisted this was the route to go, so I moved to a third clinic. I could still walk with a cane at this point. They suggested an RFA. The first clinic had done a test and it failed, but she thought we should try again. There are two tests first and I expected it to fail. This was a year ago and I was shocked that it actually helped. The second did as well but less. But only for the sciatica, but that's my most disabling pain. (Started at that clinic in Sept. Also heard about TMS at the same time. The lady at the new clinic had heard about mind-body issues and was intrigued. Fell twice in March and started with a rollator. Got a new lady about the same time, no mind-body knowledge, she increased my Norco from 5 to 7.5)

    I got the RFA on the right in May of this year. Woke up nearly pain free for the first time in 3 years. I know much of that was anesthetic, but was hopeful. In exactly 1 week all the pain was back plus spasms. Was not upset with the spine clinic, they tried, but I was done and moved to the pain clinic by July. They said they had a mind-body approach (but not TMS) which made me very hopeful. But it seems they have one regimen to treat everyone, and what seems to me to be the attitude that opioids are the greatest enemy. I want to calm my brain, reduce my pain and stop the painkillers. But my walking is very bad. They don't seem to be concerned with how unstable I am and that is concerning to me. It seems their conclusion is to remove the drug rapidly and make my brain adjust. (Most places I look say to reduce the pain med by 5-10% per week depending on the patient. They reduced by 1/3 this month and will reduce to 1/2 next month. My pain has gone up as has my fear of falling. My ability to move is reduced. I am exhausted. Of course believing they are doing the right thing is important to my recovery, but I am annoyed that they are treating me with a one size fits all approach. Winter is coming to Minnesota and falling on the ice and snow isn't a welcome proposition. I don't want to have a bad fall in order to get their attention.
     
    Last edited: Oct 21, 2017
  5. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Thanks for that recap, mouser - we've talked many times on the Chat, but that's a difficult venue in which to absorb someone's full story. I remember now that you've told us about the MS.

    So let me ask you what I think is the key question: Do you know, or do you believe (having had a proper assessment from a medical expert) that except for the pain, there is nothing wrong with your right leg and that without the pain, you should be able to walk on it without falling?

    And am I right that this is your goal, or focus at this point? Because honestly, it's a little hard to tell what your focus is. You want to use a mindbody approach, but your actual focus still seems to be on various physical treatments that have or have not worked, and you are definitely attached to the certainty that you will fall if you have pain. In other words, you are holding on to a connection between pain and disability.

    That being said, I'm not able to say whether or not your pain is in fact associated with a physical problem that would in fact cause you to fall, because I'm a tax accountant, not a medical professional!

    And THAT being said, I don't want to downplay the seriousness of your situation. You have a lot to deal with when starting with MS, after all. But my perception is that you are a long way from a core belief that your pain is a manifestation of your brain and that there is nothing wrong with your right leg. Without that core belief, I'm sorry to say that any recovery from what might be TMS is going to be minimal, if not impossible.

    However, I'm hoping that others who have dealt with the medication issue will join this conversation. Getting realistic guidance on that issue alone is a starting point.

    ~Jan
     
  6. Ellen

    Ellen Beloved Grand Eagle

    Mouser,

    Here is my experience with medication and TMS recovery. I was taking the maximum dose daily of tramadol for fibromyalgia and a long acting beta blocker daily for migraine prevention when I first learned about TMS. Neither medication helped my symptoms but I had been taking them for a very long time. When I read about TMS, all my symptoms disappeared--the book cure. However, I knew that I needed to stop the medication at that point since I no longer had symptoms. I started by gradually reducing my dose of tramadol. Immediately my TMS symptoms returned and I experienced withdrawal symptoms. It was a very difficult period. When I got through the withdrawal, I started to gradually reduce the beta blocker. Again, an increase in TMS symptoms and withdrawal symptoms. I finally got through that, but my TMS symptoms stayed at about 80% for another year before I finally became symptom free.

    It's hard to give advice on this topic, because everyone is different. I guess I would just say that if you decide to stop taking medication, to do it very slowly and gradually. Even then, you may experience an increase in TMS symptoms plus withdrawal. But if you have TMS, it is still possible to achieve full recovery with or without medication.

    Best wishes to you....
     
    Lily Rose likes this.
  7. mouser

    mouser Peer Supporter

    Thanks for your replies. Good to know what others experience.

    Here is what I believe: My body is not damaged, but my brain is trying to protect me by squeezing muscles tight, cutting circulation, causing pain and pinching the sciatic nerve. This makes my leg lose strength sometimes and when that happens, I get startled, and annoyed. This pinch has also been interfering with my sleep, for which I only recently got some CBD oil. It seems to help but time will tell.

    When I started at the clinic, the NP was writing short prescriptions and telling me horror stories about how bad opioids are. Well, my insurance only fills once a month no matter what so I went days with no med. All that happened was it hurt more and my leg was VERY unstable. The Norco kills some pain, and if I don't take it I feel all my 'normal' pain. I am most likely building tolerance to the Norco, but don't feel addicted. In those days I had none, there were no withdrawal symptoms. It just got very difficult to walk.

    I have heard Tramadol is actually harder to get off of. I couldn't take it as it made me sick to my stomach as ibuprofen eventually did in the large doses I was taking in the beginning.

    We ARE all different. Their one size fits all approach really bothers me. There seems to be little concern for my ability to move and not fall. I went from 3 pills a day to 2 all at once and next month they will reduce to 1.5 per day. That's not slow.

    Therein lies my question, does the body only start to let go of the pain when the med is reduced? Did anyone ever get pain reduced first and then wean off the med?
     
  8. Ellen

    Ellen Beloved Grand Eagle

    As written in my post above, I first lost all pain, then reduced my medications.
     
  9. plum

    plum Beloved Grand Eagle

    No. The body starts to let go of the pain when you reduce tension, be that psychological or physical. I had to let go of loads of tension before my pain levels started to break up and then ease off. Once the physical load was reduced it was much easier to approach the emotional issues. A work in progress :)

    Yes. Me, myself and I.
    I'm taking the weaning super slow (amitriptyline) and only take paracetamol (nothing stronger) as and when needed.

    Slowly, slowly is best.

    We've also weaned my husband off virtually all his Parkinson's meds. We hope he will be free of them one day.

    Edit: I only mention my hubby to demonstrate that anyone can reduce or come off even big gun medication. You simply need to be very mindful and very patient. It's vitally important to nurture your health holistically and place your focus on becoming stronger, fitter and in possession of greater general well-being. It's much easier and way less stressful that way.
     
    Last edited: Oct 22, 2017
    Lily Rose likes this.
  10. mouser

    mouser Peer Supporter

    Thanks for your responses. I am seeing in your answers that YOU controlled your recovery. You made your own choices. I am not feeling in control and it is making me angry. They are moving quickly to reduce the norco because it seems to me they believe my biggest problem is being on the med. That is not what I want. That is not mind-body work, it is drug rehab. Right now, All the med does for me is to reduce the pain just enough for me to be minimally functional. If I lose function, I am not being helped.

    I really wanted to believe in this clinic but my gut is feeling annoyed at their method and focus. My stress and fear have increased.

    If I leave, I have to figure out 'what next?'
     
  11. plum

    plum Beloved Grand Eagle

    Sometimes you have to leave. How else can you find those that will understand and help you?

    It took us years to find an incredibly supportive and compassionate group of nurses and therapists. We also had to find a pharmacist to help us find ever smaller doses of medication in order to seamlessly tail off. It has been a fight and a distressing one at times but it was worth it all to gain that precious control.

    In many ways this rests at the heart of TMS; becoming strong, assertive and possessing the courage of our convictions. It's a beautiful process where you not only heal, you become sovereign.
     
    Lily Rose, Lainey and mouser like this.
  12. mouser

    mouser Peer Supporter

    Thank you Plum, <3
     
    Tennis Tom and plum like this.
  13. Lainey

    Lainey Well known member

    Hello Mouser,

    Have read your posts and the good replies and thought I would add my 2 cents, for what it is worth.

    I was diagnosed with displaced discs (L4-L5) (if I recall correctly) and hip joint deterioration. This was about 7 years ago, although I knew the back issue was nagging at me from around 1995 or so. I began having severe pain around 7 years ago and went to several different docs, who defined what they believed I had/needed to do. I did take tramadol for a few months but it had some irritating side effects, so I decided to stop this drug. It was difficult, felt like I had a terrible case of the flu for a few days, missed work, miserable, but eventually the negative symptoms settled and I was free of this drug. I too had fallen and began using a stick. I was told to take 500 mg of naproxen every 12 hours. I did this for a number of years. Fortunately I had no side effects. It took the edge off the pain and eventually I began walking without the stick. I was reasonably mobile, but could not walk far without hip pain. Then last winter I developed a sciatica pain that was unbearable. It progressed, along with increasing pain in my hip again. I was afraid of falling and began using a stick once again.

    I had read Sarno some years back (Healing Back Pain) and decided to do another read. I began journaling, knowing full-well how many negative things had recently happened in my life (since 2014). The journaling was cathartic and dramatic in its results. After several months of intense emotions, being processed in the form of my journaling, I woke up one morning and the sciatica was gone!! I still had a wee bit of tenderness, but the severe, debilitating pain was not there. I could use that leg again.! I still have back pain and severe hip pain but it is better from time to time. I still use the stick. I still am processing my emotions, but realize I am much, much better than this past January. I know the fear of being 'minimally functional' and resonate with you on this. I am not as functional as I was, but I am pushing myself, to get through this. I have little patience with doctors and clinics. I am trying to find my own path. I am returning to a rehab pool, (open to all in the community) and beginning water exercises. It is inexpensive and the water feels great on my body.

    It seems you are at a junction. You may need to do what Plum, so kindly, suggests, that is move on, away from the myriad medical opinions that seem to be causing you more unhappiness. This may mean you need to get off the drugs, so I cannot resolve this for you, but you may want to consider how much you need them. Read Sarno's books, take a look at Steve Ovanich's The Great Pain Deception, peruse the information on this website to determine the healing process that can resonate with you. Go for it. You came to this site and it can help. Be patient with yourself too.
    Lainey
     
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  14. mouser

    mouser Peer Supporter

    Thanks Lainey, I read Sarno's and Steve O's books last year about this time after learning about TMS last July and did the SEP. I think I was being a bit of an over achiever with the rate I was diving into the new knowledge. Alan Gordon's 21 Day plan was also goot for getting a better mindset.

    I have both MS and chronic pain which are both valid diagnoses in MN to get medical marajuana. If I can get the sciatica massaged out, which is my most disabling pain, Maybe the MJ would be enough and I wouldn't need the Norco to function. I'm not functioning all that much anyway. It's hard to find anyone to prescribe it tho.
     
  15. Lainey

    Lainey Well known member

    Sounds like you are definitely doing what you need to do. Hope you can get some relief from the pain. Sciatica is very debilitating. I do not know the MJ laws in MN but hope you can get some relief. Maybe slowing down is what you need, I know the desire to get things done/accomplished NOW, so I can resonate with that thought. Rework the 21 day plan, but take it in a slower stride. I found the somatic breathing (lesson 9) and the cognitive soothing to be very helpful. I practiced the cog. soothing while on a long drive and my buttock was beginning to ache. Happily, the pain subsided, pretty quickly. Made me smile.
    Hope you can find some smiles soon.
    Lainey
     
  16. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    YUP!
     
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