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Old 11-07-2011, 12:19 PM #11
melon melon is offline
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melon melon is offline
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Join Date: Oct 2008
Posts: 177
15 yr Member
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Quote:
Originally Posted by mrsD View Post
From what I gathered about the poster that echoes is recalling, his was a chronic pain condition he had all over. He finally tried
rose's B12 therapy, and went on to use huge doses of B12 and now I have seen him with methylfolate... on the net. One person answered him with the suggestion of the MTHFR mutation, which might have been his problem all along. It is difficult to really tell much on the net however, exactly what is going on with him.

If you PM me I'll send you links to him, and you can try to contact him yourself.
Thanks, MrsD I will do that .


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Old 11-07-2011, 02:37 PM #12
melon melon is offline
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melon melon is offline
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Originally Posted by Dr. Smith View Post
I guess I'm not understanding what specifically is keeping you from relaxing/meditating - pain? shocks/jabs? anxiety? Some folks who are taking gabapentin or other meds for PN have the opposite problem - they can't stay awake.

I have some insomnia issues myself. I usually like to resolve them on my own like you (just not fight it until I fall asleep) but there are times when medical assistance is necessary/prudent.

Have you discussed this with your docs, and are they doing anything for you?

Doc
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Originally Posted by Dr. Smith View Post
I guess I'm not understanding what specifically is keeping you from relaxing/meditating - pain? shocks/jabs?
No, but then when you have so many things going on its hard to know how you define pain or separate it , or at least it is in my case.

Part of the reason for this is I believe due to years of having used exercise techniques based on proprioception ( esp haptic ) to " rewire myself " so I could isolate and deal with problems that had been causing me bad scapular winging in the past , but had since progressed to other things. ( no thanks to the nhs )

By trying to the strengthen this connection between touch , sensations lost though injury I started creating this loop which was causing a reflex reaction in response to my injury - and in turn made me more aware of the joints and their surrounding space.

This was a problem in the sense the more this happened the more powerful it became , because it was being fueled not just by my desire to fix my joints but also a very powerful emotional desire to return to sport again.

It may sound trivial but without that and the memories it evoked to use as sensory trigger, i do not believe I would of been able to recreate the same sensations or had the feedback response I required to start building my own self momentum ( almost like my body was becoming sentient to itself )so I did not have to even think , it just felt instinctive and resolved itself.

I did not think about much because - i was too to excited - about what i had been able to achieve myself , but unfortunately my learned ability only allowed me to hold my shoulders in place when they were not moving , and not when exercises or attempting repetitive motions instead.

With surgery not an option and ,in my mind coming so close to a solution, I decided to try something Id read about called Prolotherapy instead which hindsight seemed good idea - but turned out to be disastrous .

3 months into this treatment of injections using dextrose / lidocaine / sarapin I started noticing i could no longer breathe properly , which in turn became chronic belching and finally gerd itself .

Apparently this never happened before to any one ( lucky me ) so as usual I found myself with another set of problems that could easily be explained by themselves to go with my preexisting ones with my joints ( which by this poit already had sizable history - no thanks to incompetence of nhs )

Two years after unsuccessfully dealing with that ( because the nhs refused me an endoscopy ) I went to Bulgaria to get Endoscopy instead and in doing so was given antibiotics and metoclopramide which started me down this now familiar road of neuropathy instead.

It took this forum and people like Mrs Ds wisdom to eventually stop the anxiety and all other classic symptoms associated with pn , and when they eventually calmed down ,and I managed to control my other reflux issues ( round 2002 ) I
something else even worse which trumped both the pn , and everything else Id had had instead.

It was something thats really prevented me talking about my history here for lots of reasons , and perhaps could be the biggest factor of all because ( without sounding like fruitcake ) there is no symptoms or history of anything else like it ,so its why ive chosen to just try
to focus on the more , " common " issues instead.

The doctors /system here is broke, and I am crippled now as result of that something that is impossible to prove through current means ( even if the nhs did pay for it ) so I jut trY to focus on improving what i can instead - but could just easily me misinterpreted by the same sort of
bigot ism / skepticism that was responsible for me getting this bad the first place.

Without a way to prove this then, there is simply no way I can talk to any doctor and realistically expect them to believe - much less help me.

I either pretend i just have this or that , and left out the rest - as Ive done here or risked getting locked away / lectured by some biggot instead.

I tried going privately 3 years ago instead of being helping got charged almost £600 for mistake they made themselves ( or rather the private gp ) and then insisted i pay for , because the GP hadnt bothered to send my information to someone else..

No offense, but I lost faith in western medicine long ago.

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