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simplyfree
20 Posts |
 Posted - 06/24/2008 : 22:52:15
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I've been reading some of the posts on here and know that alot of what gets posted is repetitive, especially for those who have been posting for quite a while. I've done a few searches but would appreciate input from those who have 'been there and done that.'
My symptoms started over two years ago with what I thought were two 'incidents' which precipitated increasingly excruciating and endless back and pelvice pain. I have been to more drs, chiros, massage, etc. than I care to recount. I would improve but the pain was always ever present. I am sensitive to medication so Rx drugs unfortunately, or fortunately, were not an option for me. Ice, heat, hot oil, acupuncture, chiro, Ativan, Tylenol or Ibuprophen along with a growing list of don't do's became my life.
I should mention a few things: (1) History - I was diagnosed with CFS and fibromyalgia 15 years ago. Debilitating enough that I applied for SSD and haven't been able to work since. I have also experienced severe depression and anxiety which has been related to thyroid issues. Seemingly unrelated sypmptoms can be associated with hypothyroid and adrenal fatigue. (2) Seven months after my husband and I were married, and about a month after the two initial pain incidents, my husband was diagnosed with Hodgkin's. I have known that stress (fear) was definitely a factor in all of this, it still is. But the experts kept & keep telling me, first, I had a pelvic muscle tear (which I now doubt) and second, I have multiple muscular injuries, overused and tight, though no spinal injury showed on any diagnostic test. It's almost perfect. However, my body was telling me I needed to be moving and finding another answer. But when I did move, I paid dearly. And the fear of doing was worse. Facing the dr afterwards was even worse. I'm sick of feeling guilty for attempting to live a somewhat normal life.
The worst pain is after sitting for any length of time. My pelvic, hip (especially left), groin area, down my left leg all throb, with radiating pain up into my lumbar and thoracic area. My chiro & other drs have told me basically to walk, no sitting, no lifting, no arms over the head, no driving, no shopping, very little cleaning & cooking, no bare feet, then perhaps I could have a few pain free days in a row. I had no life but I did seem to see limited improvement. What I didn't see was a light at the end of the tunnel.
After my husband's recurrent and aggressive cancer diagnosis 2 months after chemo, the pain worsened. (There are other high stress factors involved too.) Anyway, I continued to do less and less and have more pain. Dr's orders. But I have always felt that something more had to be involved, especially stress. I went to a pain specialist who put me on Neurontin. Needless to say, it knocked me out! But it may have blocked the pain cycle. Right before seeing him, while reading a book on cancer, at the back of the book was a page about chronic pain and an endorsement for the work of John Sarno. I googled Sarno, ordered Healing Back Pain and immedidately began going what I call 'AMA' - against medical advice. I saw the light. I was so excited, I told everyone I knew about it. THIS is the answer. I was also scared, had anxiety, doubts, etc. but Sarno had described my life almost to a tee and I knew I was dealing with TMS. That was almost 4 weeks ago.
Since then I've started moving, doing, shopping, cleaning, even driving short distances and telling my brain to just knock it off! It has worked to a major degree except that when I sit and bend the old familar pain rears its ugly head. Again, nothing on MRI's, CT scans, bone scan, X-rays.
I shared some of my newly-found info with pain dr and he was thrilled at my progress and change of attitude toward pain. I stopped taking Neurontin and have no follow-up appt to see him.
I believe this is TMS. I believe the pain is real. But I guess my question is to what extent? It seems that a good deal of the pain and tension has resolved but sitting brings the old pain in the touche & hip & pelvic right back - not as severe but it's still there. The fear is that it will get severe again. This is a cutting pain in the pelvic area and deep bone pain in the hip & left side of tail bone - pain of which Dr. Sarno mentions in his book, I know. I also have nerve sensations, not painful, just present. The thoracic pain waxes and wanes but is pretty constant. Cysts in my kidneys may account for some of that. With the pain come doubt, fear, anxiety, and thoughts that perhaps there is something else to this? I try to take walks at least twice a day and carry on with my life as much as possible and try not to obsess about the pain. My energy level is very low right now and I'm working on that too. But I see the more I do associated with lifting, bending or sitting, the more pain I have. Sitting is very uncomfortable.
I know it takes time and may even require phychotherapy (which I'm not in position to do right now) but is there something else I should be doing that I'm not, something I'm missing? More exercise to loosen muscles which basically haven't been used in almost two years? How long and to what extent should you ignore the pain or pursue things to enhance the TMS philosophy? By enhance I mean learning to deal with stress, anxiety, tension, emotions, etc. I know Sarno says dealing with stress isn't a prerequisite to resolving TMS. I understand that. But then again there is the almost overwhelming stress issues and repressed emotions that I don't feel can or should be ignored. I'm journaling and at least getting some of it outside of my head.
I received my 2nd Sarno book, The Mindbody Prescription. Haven't started it yet but will this week.
I still see my chiro because I believe there are benefits apart from pain management. The same with acupuncture. My chiro has seen an improvement in how well I move but we havent discussed TMS in any detail. I'm still working on completely convincing myself and don't need negative input nor her approval. It is what it is and nothing can change that. But that doesn't stop me from hearing her voice in my head every time I do something I know she would advise against.
But is that all that it is? More has to change, doesn't it? There has to be more pain resolution than this. I've come this far and feel there's more work to do but I need assurance it's worth it and I'm on the right track. I've been dealing with health issues all my life and, frankly, I'm fed up, used up really. Pain takes a heavy toll not just physically, but mentally and emotionally.
I'm sure some (if not all) here know exactly what I mean.
simplyfree |
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drziggles
USA
292 Posts |
Posted - 06/25/2008 : 09:16:52
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Sounds like you already know what to do! However, to summarize, you need to:
1. More fully convince yourself that the problem you have TMS.
2. Start doing all of your usual daily activities. Sounds like you have some big-time conditioning that needs to be unlearned. As long as you are living like a cripple, you will remain crippled.
3. Keep journaling.
You now have a light at the end of the tunnel, so keep up the good work!
Of course, you should consult with your doctor before making any medical decisions. |
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hottm8oh
USA
141 Posts |
Posted - 06/25/2008 : 11:05:41
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I had a lot of negative conditioning when it came to sitting or doing any kind of movement with an impact. It has taken me about 6-8 weeks to get to a good point with sitting. I do still have pain, but I no longer have the anxiety and constant mindfulness of equating pain with sitting. I still have a lot of negative conditioning around high impact exercises, and it will probably take me more time to get over that. For me personally, it has been baby steps. I spent 7 years in pain. I won't be able to convince myself overnight that all of my old habits were total b.s. You just need to keep going in the right direction. Keep finding ways to convince yourself that sitting is not the cause of your pain.
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armchairlinguist
USA
1397 Posts |
Posted - 06/25/2008 : 11:11:55
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quote:
I believe this is TMS. I believe the pain is real. But I guess my question is to what extent? It seems that a good deal of the pain and tension has resolved but sitting brings the old pain in the touche & hip & pelvic right back - not as severe but it's still there. The fear is that it will get severe again. This is a cutting pain in the pelvic area and deep bone pain in the hip & left side of tail bone - pain of which Dr. Sarno mentions in his book, I know.
You are still experiencing conditioned pain, which is why your pain has not gone away, not because it is not TMS. You are also still reading the words of Sarno and thinking "But this can't really apply to MY pain, right?" Even when it clearly does. :) This isn't at all abnormal (actually it is completely normal and common), but it's something you need to get past. If Dr. Sarno says in the book that pain like yours can be TMS you should listen!
If you've been diagnosed with fibro/CFS that's pretty much the same as being diagnosed with TMS, per Sarno. It is possible to make a full recovery. Some people who have had TMS in the form of fibro recommend Nancy Selfridge's book Freedom From Fibromyalgia which works the Sarno approach in a fibro-oriented way.
You are doing great by yourself so far. Keep up with the program, and work toward dropping physical modalities and investigating emotional causes. It is likely you will have to stop seeing the chiro and acupuncturist at least for a while (and for the chiro I recommend stopping for good because they see things in structural terms -- acupuncturists vary a lot on that).
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It's not 100% belief that's required, but 100% commitment. |
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mizlorinj
USA
490 Posts |
Posted - 06/25/2008 : 11:23:22
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Since you have been to doctors already and nothing structurally wrong has been found, I'd keep expressing my feelings about everything going on in my life--write. Read Dr. Sarno's books, specifically the Treatment Plan that can be found in The Divided Mind. Read it daily.
You can search success stories here too--I had the butt and leg pain myself (MRI showed large herniated disc) and using Dr. Sarno's approach, I am pain-free. It did take time to do certain things though, things I was afraid to do like lean back on my tailbone while exercising. But I did conquer those fears too and can do things I feared. It required a lot of time and patience.
RE: Chiro--I tried one before I knew about Dr. Sarno and I felt better for 20 mins or so after being there, but since the pain came back, I knew the chiro was not the answer. They treat it as a physical ailment--which it isn't. And he was quite sarcastic with me when I told him about mind/body pain and Dr. Sarno, and that I wouldn't be getting any more treatments.
Happy to see your recognition of the mind/body connection.
Best wishes for healing,
Lori |
Edited by - mizlorinj on 06/25/2008 12:31:10 |
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simplyfree
20 Posts |
Posted - 06/25/2008 : 17:06:05
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I know I need to keep reading Sarno and others to be fully convinced. My mind is conditioned to believe I can and can't do certain things and this has been going on for years. Is that discussed in more depth in one of his books also?
I have thought about quitting my chiro and acu because of Sarno's suggestions. Time to quit thinking, huh?
I still have work to do I know. I just need to keep moving forward. Fear seems to have a way of maneuvering itself into the dynamics and I can feel myself slipping backwards. If not fear, then anger.
Thanks for the advice and info on Nancy Selfridge's book. I'll add it to my reading list. As for consulting with my dr, most of them see CFS or anxiety or stress and categorize any and every pain, sympton, or thought into that box. The box may have it's place in certain instances but I'm still looking for one who can see and treat outside the box.
Thanks again for your support! |
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Dave
USA
1864 Posts |
Posted - 06/25/2008 : 18:49:46
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quote:
Originally posted by simplyfree
I have thought about quitting my chiro...
If you have not already done this, then you have really not begun TMS treatment. You simply must stop all physical treatments, otherwise you are not truly convinced that the problem is not structural.
You may believe that seeing a chiropractor has benefits, but it is simply contradictory to TMS treatment, period. |
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armchairlinguist
USA
1397 Posts |
Posted - 06/25/2008 : 20:47:15
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BTW, simplyfree, the reason that tag about consulting your doctor was in Dr. Z's post is that he is an actual doctor, so it's important that he not be seen as giving actual medical advice on the board to people who are not his patients. It's not directed at you personally. Lots of people (most, in fact) have seen doctors out the wazoo before they get to the forum. (I had seen two MDs, two DCs, an osteopath, an LAc, and several massage therapists!)
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It's not 100% belief that's required, but 100% commitment. |
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Laura Weinberg
USA
3 Posts |
Posted - 06/26/2008 : 07:39:11
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After seeing orthopedists, physical therapists, physiatrists, having numerous trigger point injections and living by all the "dos and Don'ts" for my back, at first it was difficult to switch from structural to psychological. But as everyone else has just advised you, "let go" of everything that has structural underpinnings and Sarno's technique will kick in, leaving you liberated. This has worked for me since my appointment with Dr. Sarno, over 21 years ago.
Laura Weinberg |
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LuvtoSew
USA
327 Posts |
Posted - 06/26/2008 : 07:56:31
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You have been through a lot but it sounds like you are really improving and quickly.
I have also had many treatments and one chiro I seen told me I shouldn't vacumn or lift heavy things. Well I'm sorry but vacumning
is my favorite cleaning activity, I mean I like to vacummn, and I have a Dyson so I even enjoy it more now.
I am also having a problem getting away from the structural and what is helping me more than anything is (besides this message board) is reading stuff by authors other than DR. Sarno so in my mind its just not his opinion but many other DR.s opinions that the mind can cause pain. I put Nancy Selfridge's book on hold from the library, not that I have fibro, but pain is pain , so the more I can read opinions on how the mind affects the body the more I can believe it. Its like getting 2nd, 3rd and 4th opinions.
I also like the saying someone posted, drziggles "As long as you are living like a cripple, you will remain crippled".
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simplyfree
20 Posts |
Posted - 06/26/2008 : 16:05:36
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I'm not sure what was meant by the 'tag' for drZ but greatly appreciate his comments whether personal or professional.
Turning my attention from physical to psychological more each day is opening up new and old realizations of fear and repressed emotions. It's really amazing. It's also sobering to realize how much of life can be....I don't know what other word to use for it but...wasted on obsessing about health and pain issues that don't really exist. What does exist is emotional bondage to the errant belief your body is an enemy which you must fear.
I have feared it from childhood. I'm now asking myself why?? Why did my brain see a need to turn life experiences into harrowing nightmares? A coping mechanism? Sarno says a defense mechanism. One and the same I think. If so, one that's gone awry. I'm guessing that to a child some of life's experiences are perceived as nightmares. Once perceived, the subconscious continues it's repressive behavior with us none the wiser. Until...we see that light.
Laura W., you've dealt with this for 21 years - what an inspiration. How long did it take for the pain to resolve? Has it recurred or taken other forms throughout those years?
I haven't officially cancelled my chiro appt but rescheduled. I'm putting it off but I know I'll do what I have to do.
I drove longer today than I have in two years. It hurt but not for long.
simplyfree |
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New and wondering......
