Miss Metta
Peer Supporter
Hi all
Although I do suspect my problem is TMS, and I understand that one of the first tenets is to come to terms with the diagnosis, the way a neurologist treated me has left a stone that I still feel might be unturned and I think this may be hampering my recovery.
My problem area has been my lower leg, mostly my left side, although at its worst my right side was also affected though not as bad, which started to have symptoms of pain, swelling, tingling, numbness and electrical shock sensations through my feet which were particularly bad at night.
This problem commenced when I started trying to use flippers whilst swimming.
What's the problem with flippers?
Well, I have always had hypermobility of the joints which caused a lot of pain when exercising (I did not find this out until after I was getting alot of back, leg, shoulder, neck issues when I tried to lift weights or do aerobics...whether there was something else going on is now up for serious consideration, but I digress).
The flippers, according to a physiotherapist, had caused strain on my tendons (hypermobile people have laxity of the joints, therefore the muscles immediately surrounding a joint have to work harder to keep it stable during motion. This causes quicker fatigue, and, I am told, pain).
It was possible that the flippers were causing some kind of injury.
I stopped the flippers, but the pain persisted, until one day I went for a walk up a hill I had walked many times before and my leg practically stopped working. I might add this was a few weeks before I was due to get married...so from a TMS point of view, the two are not mutually exclusive. I had also in the last 18 months: lost my job and did not find another one; started a new relationship, went broke and had to declare bankruptcy due to my unemployment but not before being hounded to tears by debt collectors whilst trying to make good on the money, had to move house as I was unable to pay the rent, moved to a regional area where there was no work for my skillset, ( I had nowhere else to go) and then would spend the entire week on my own as my partner was working in the city. Lots and lots of big stressors and changes and lots of isolation and loneliness. Other health problems also cropped up.
Back to the leg. Several physios proclaimed different diagnoses, including peroneal tendonitis but I did not respond to rehab and did not get better, so it wasn't that. Eventually I had an MRI, (normal) a CT scan (of my spine, to ensure no trapped nerve, normal), and went to see this neurologist. However of all the professionals I saw (and I do not think I was exhaustive in this like some people have gone through), this neurologist seemed completely disinterested.
A crusty old Frenchman who looked like he'd been dusted off and brought out of retirement, he received a phone call just as I walked in and asked me to wait while he took it. I was privy to the call. He seemed quite excited by this call and the 'find' of a 'case' of something particular, as he conversed with another in his field.
So when it was my turn, he seemed like he was already distracted, because he was excited by this other patient's diagnosis. He barely examined me, cut me off mid-story and told me I had "compartment syndrome", which is something that all the doctors and physios said was either not the diagnosis, or if it was, was extremely weird presentation. He told me to rest six months and sent me on my way . I believe that compartment syndrome generally requires surgery, and when I asked about that, he said that it didn't. He based his diagnosis on the fact that he says that he once had compartment syndrome and it just required rest. Again, all the research I had done indicated compartment syndrome requires surgery. So I paid a lot of money for what I felt was the brush-off. And I felt like he didn't really know about compartment syndrome if was simply cured by 'rest'.
When I later saw a sports med doctor who could find nothing organically wrong with me: he went by my range of motion, the MRI and CT scan and the fact that I had seen the neurologist, not anything that the neurologist had done or said...he agreed with two GPs and two physios and felt that it was not compartment syndrome, and this was when the idea of chronic pain related to stress and 'overactive pain receptors' was suggested to me. This was before I learned of the word TMS. He told me to stop all further investigations, don't do any surgeries (not that any had been suggested at that point), prescribed Lyrica and told me to wait until my life improved. This I did.
That was a year ago. I am now married, life circumstances improved somewhat, the pain nowhere near what it had been, but it is still there, lingering, and yes, sometimes it will travel to my foot and some days worse than others and sometimes I can just twist or turn a certain way and it can trigger it. I took myself off Lyrica about a month ago with no real change, though it definitely helped at the beginning, when the pain was worst.
A few weeks ago a masseuse unexpectedly sent me through the roof by yanking my leg by the foot, which caused my ankle to immediately react with searing pain, replicating the pain easily. When I screamed, he said that ankle tendons were in the foot, pressed into my foot, and again I reacted; he was able to reproduce the pain by doing that. This then has made me start to doubt that it is mind/body(I had only just started to read Sarno that very week), and that maybe there was a tendon/nerve problem that no one had looked at.
Even though my sports specialist was suggesting it was a mind/body thing, because the masseuse was able to trigger the pain, and because that nuerologist treated me so flippantly, despite what the sports doctor said, I now doubt sometimes whether it is TMS. I feel that had he been doing his job properly, the nuerologist might have sent me for nerve conduction tests or something. But he didn't, and so I worry that the sports med doctor came to his conclusion based on not enough info. And I still have a problem. It's only not severe because I don't do any swimming or fitness walking any more; or, not often.
I am aware that part of TMS is the chasing down of diagnosis and treatments. No one has told me I have TMS...the sports med doctor did not use that term, but he did describe patients who experienced chronic pain due to over-reactive nerve centres and who made looking for a solution their entire life's work. He did not want me to go down that track.
I would appreciate thoughts on going to my doctor (a new one, as I am now living elsewhere from where all this started), and going through the history, and see if it can be looked at again.I wonder about nerve tests, or whether the sports physio was thorough enough when he pushed me, pulled me, and got me to move this way and that was enough, because theNuero did ziltch , gave a wrong diagnosis that also showed ignorance, and had an attitude to boot.
Or is this TMS anxiety, and so I should suck it up, ignore the flaky neurologist and work on my 'stuff'?
thanks all
Metta
Although I do suspect my problem is TMS, and I understand that one of the first tenets is to come to terms with the diagnosis, the way a neurologist treated me has left a stone that I still feel might be unturned and I think this may be hampering my recovery.
My problem area has been my lower leg, mostly my left side, although at its worst my right side was also affected though not as bad, which started to have symptoms of pain, swelling, tingling, numbness and electrical shock sensations through my feet which were particularly bad at night.
This problem commenced when I started trying to use flippers whilst swimming.
What's the problem with flippers?
Well, I have always had hypermobility of the joints which caused a lot of pain when exercising (I did not find this out until after I was getting alot of back, leg, shoulder, neck issues when I tried to lift weights or do aerobics...whether there was something else going on is now up for serious consideration, but I digress).
The flippers, according to a physiotherapist, had caused strain on my tendons (hypermobile people have laxity of the joints, therefore the muscles immediately surrounding a joint have to work harder to keep it stable during motion. This causes quicker fatigue, and, I am told, pain).
It was possible that the flippers were causing some kind of injury.
I stopped the flippers, but the pain persisted, until one day I went for a walk up a hill I had walked many times before and my leg practically stopped working. I might add this was a few weeks before I was due to get married...so from a TMS point of view, the two are not mutually exclusive. I had also in the last 18 months: lost my job and did not find another one; started a new relationship, went broke and had to declare bankruptcy due to my unemployment but not before being hounded to tears by debt collectors whilst trying to make good on the money, had to move house as I was unable to pay the rent, moved to a regional area where there was no work for my skillset, ( I had nowhere else to go) and then would spend the entire week on my own as my partner was working in the city. Lots and lots of big stressors and changes and lots of isolation and loneliness. Other health problems also cropped up.
Back to the leg. Several physios proclaimed different diagnoses, including peroneal tendonitis but I did not respond to rehab and did not get better, so it wasn't that. Eventually I had an MRI, (normal) a CT scan (of my spine, to ensure no trapped nerve, normal), and went to see this neurologist. However of all the professionals I saw (and I do not think I was exhaustive in this like some people have gone through), this neurologist seemed completely disinterested.
A crusty old Frenchman who looked like he'd been dusted off and brought out of retirement, he received a phone call just as I walked in and asked me to wait while he took it. I was privy to the call. He seemed quite excited by this call and the 'find' of a 'case' of something particular, as he conversed with another in his field.
So when it was my turn, he seemed like he was already distracted, because he was excited by this other patient's diagnosis. He barely examined me, cut me off mid-story and told me I had "compartment syndrome", which is something that all the doctors and physios said was either not the diagnosis, or if it was, was extremely weird presentation. He told me to rest six months and sent me on my way . I believe that compartment syndrome generally requires surgery, and when I asked about that, he said that it didn't. He based his diagnosis on the fact that he says that he once had compartment syndrome and it just required rest. Again, all the research I had done indicated compartment syndrome requires surgery. So I paid a lot of money for what I felt was the brush-off. And I felt like he didn't really know about compartment syndrome if was simply cured by 'rest'.
When I later saw a sports med doctor who could find nothing organically wrong with me: he went by my range of motion, the MRI and CT scan and the fact that I had seen the neurologist, not anything that the neurologist had done or said...he agreed with two GPs and two physios and felt that it was not compartment syndrome, and this was when the idea of chronic pain related to stress and 'overactive pain receptors' was suggested to me. This was before I learned of the word TMS. He told me to stop all further investigations, don't do any surgeries (not that any had been suggested at that point), prescribed Lyrica and told me to wait until my life improved. This I did.
That was a year ago. I am now married, life circumstances improved somewhat, the pain nowhere near what it had been, but it is still there, lingering, and yes, sometimes it will travel to my foot and some days worse than others and sometimes I can just twist or turn a certain way and it can trigger it. I took myself off Lyrica about a month ago with no real change, though it definitely helped at the beginning, when the pain was worst.
A few weeks ago a masseuse unexpectedly sent me through the roof by yanking my leg by the foot, which caused my ankle to immediately react with searing pain, replicating the pain easily. When I screamed, he said that ankle tendons were in the foot, pressed into my foot, and again I reacted; he was able to reproduce the pain by doing that. This then has made me start to doubt that it is mind/body(I had only just started to read Sarno that very week), and that maybe there was a tendon/nerve problem that no one had looked at.
Even though my sports specialist was suggesting it was a mind/body thing, because the masseuse was able to trigger the pain, and because that nuerologist treated me so flippantly, despite what the sports doctor said, I now doubt sometimes whether it is TMS. I feel that had he been doing his job properly, the nuerologist might have sent me for nerve conduction tests or something. But he didn't, and so I worry that the sports med doctor came to his conclusion based on not enough info. And I still have a problem. It's only not severe because I don't do any swimming or fitness walking any more; or, not often.
I am aware that part of TMS is the chasing down of diagnosis and treatments. No one has told me I have TMS...the sports med doctor did not use that term, but he did describe patients who experienced chronic pain due to over-reactive nerve centres and who made looking for a solution their entire life's work. He did not want me to go down that track.
I would appreciate thoughts on going to my doctor (a new one, as I am now living elsewhere from where all this started), and going through the history, and see if it can be looked at again.I wonder about nerve tests, or whether the sports physio was thorough enough when he pushed me, pulled me, and got me to move this way and that was enough, because theNuero did ziltch , gave a wrong diagnosis that also showed ignorance, and had an attitude to boot.
Or is this TMS anxiety, and so I should suck it up, ignore the flaky neurologist and work on my 'stuff'?
thanks all
Metta
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