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intercostal Neuralgia? Peripheral Neuropathy? severe burning anyone else?

W

winterhaven123

Peer Supporter
Hi I am in need of support it's been constant severe wide spread burning started upper abdominal spread through My rib cage chest wall right now its in my legs & thighs low back everywhere? Its been constant non stop for over 4 years Thank you Ellen & Walt for your support. it's so widespread unsure what's going on only stop if i lye down Anyone know or had this please respond thank you Judy
 
winterhaven123 said:
Hi I am in need of support it's been constant severe wide spread burning started upper abdominal spread through My rib cage chest wall right now its in my legs & thighs low back everywhere? Its been constant non stop for over 4 years Thank you Ellen & Walt for your support. it's so widespread unsure what's going on only stop if i lye down Anyone know or had this please respond thank you Judy
Click to expand...
Mala said:
@winterhaven123 what have the doctors said?

Mala[/QUOT
Mala said:
@winterhaven123 what have the doctors said?

Mala
Click to expand...
Hi Marla Which Doctor I have seen so many . In the beginning when it first stated i had so much testing from a good clinic all they could say is neropathic pain. & discontinued seeing me. No meds at all the pain was a 10 nothing could be found.I have gone to the Emergency room so often they also ran so much testing I heard many times from them it' Costrocontritis or it's Pschosomatic, I got another MD & she said there is no more I can do you had to much testing. I told every Md i seen i need nerve conduction study no MD would give Me a Referral. Finally the 2nd Md sent Me to orthropedic surgeon I went crawling on my back because i could not stand thinking He would find the problem with My ribcage Had more Mri cervical & back before i left he said I need surgery on my neck ASAP Cord compression & C-5-6 large herniated disks he said 2 days & I freaked out & said its not My neck it's My ribcage & back. nothing was found I put surgery off for 10 days on my neck. began to think maybe my neck was causing my upper back pain. had cervical neck surgery & was pumping the pain pump for my back. it never touched the pain in my upper back ribs & abdominal. I had several Epidural Neck that dident bother me much, low back & midback the 3rd injection in My mid back stopped most of my abdominal pain. had several in my ribs they never helped. The surgeon talked fast give Me 2 minutes of his time & said He don't know whats causing it. There's 5 things that could be & all i could remember him saying is complex pain syndrome & emotional I missed the other 3. I seen another general surgeon & he said it;s not adhesions it could be intercostal Neuralgia. been seen by 2 neurologist all they did was check My reflexes & pin prick & smell test & off I went The 2nd one give Me a referral to nerophysotheripist & I had 5 hours of question & computer testing & they said I had clinical depression & somatoform disorder. I have been seeing her for almost 1 year with no improvement. the only thing that helps me some is Gapapentin. Every time i see my primary Md He says it could be Peripheral Neuropathy. & there is no treatment for it so here I am stuck & yes I am in severe emotional disdress have you ever heard of this? thanks for asking Judy
Click to expand...
 
Judy,

My recommendations:
  • Are you able to afford working with a TMS therapist via Skype? I think you are best off at this point treating your pain as TMS, but you need the support of a good TMS therapist.
  • You would also benefit from treatment for trauma. Is the therapist you have been seeing trained in treating PTSD with EMDR or somatic based treatments?
  • Also, seems like some kind of medication to better manage your pain is needed till you can get results with TMS therapy. I know doctors are reluctant to prescribe pain meds these days. Have you gone to a pain clinic?
So sorry to read about all you have been through. Hoping you find some relief and hope soon....
 
Hi Ellen, I don't know where to begin with a tms therapist i know there is a listing of them & I am unsure about there fee's i wonder if any accept any insurance? The Thearpist i see. i think may be trained in ptsd She is the one that diagnosed me with it. She said she did study mind body but i dont know to what extent. & most & i know she is familiar with somatic pain. but did mention she is unsure og as how to treat it. there is No one in my area that does. I am in Central Fl between Tampa & Orlando. The only one i could find is Md S Brady who is not accepting new patience. I myself thinks Trauma & depression plays a big role but it's rare to hear of anyone with Similar pain as it is constant & deep burning.
 
I'm interested in Skype TMS therapists too. I can't find any specific info on who does this and what they're rates are. There are a couple of TMS therapists in my area (SF Bay Area), but they're rarely accepting new patience and their rates are geared toward the affluent.
 
bagofwater said:
I'm interested in Skype TMS therapists too. I can't find any specific info on who does this and what they're rates are. There are a couple of TMS therapists in my area (SF Bay Area), but they're rarely accepting new patience and their rates are geared toward the affluent.
Click to expand...
Hi what type of pain do you have? Ellen just sent Me the list of practitioners .
 
@winterhaven123

I'm very sorry to hear about what u have been & r going thru- the pain, the unnecessary surgery, the unsympathetic doctors & the whole uncertainty of what is going on.

The diagnosis of somatoform disorder simply means pain that cannot be diagnosed so when doctors say this they generally do not know what is going on. This however does not mean that your pain is not real, it just means the source is unknown which also means there is a likelyhood that it could be TMS.

The diagnosis of depression doesn't come as a surprise. After all who would not be depressed after they have been thru so much!

So u think u may have TMS which is why u r here & that is good because this a great starting point for many & also a place where u will get a lot of support.

Having said that my advice to u would be to see a TMS doctor first & foremost, as soon as u can if possible- not just a therapist. You need to see someone who is a qualified doctor & a TMS expert. This is very important if u r going to start off on the right foot & it will give u the motivation u will need to get better. U have been thru so much uncertainty that you must get assurance & a correct diagnosis from someone who is qualified to give u that. U need to hear it straight from the horse's mouth that what u have is indeed TMS otherwise any doubt will just interfere with your recovery.

A strong doctor patient relationship is also key in boosting your confidence & belief since u have been bounced around by so may unsympathetic practitioners.

U say u r in Florida & that Scott Brady is not taking any more patients. Would it be possible for u to travel to see someone else like maybe Dr Schubiner with all yr medical records? Although I have never met him personally others here on this forum have & may be able to tell u more about him, but the couple of times that I emailed him he has very kindly & promptly replied in a very reassuring manner. Apparently he spends 2 to 3 hours with each patient & is quite thorough.

I know the logistics of seeing him may be difficult but perhaps u could email him & if u feel that this may be an option then u could see him intially & always follow up with a therapist thru skype.

In the meantime do take whatever medication u feel u need that will help .

I wish u all the best. :)

Mala
 
Hi again, Winterhaven. If seeing a TMS doctor is not possible, have you done the
Structural Education Program? I think you need convincing that your pain is from TMS
and that will help you to believe in TMS. It takes total, 100 percent belief.

The SEP encourages us to journal about repressed emotions that often go back to our
childhood. That was the case with me. I never realized how insecure I felt when
my parents divorced when I was 7 years old. But I had repressing that, and believe my
back pain came when very close friends divorced. I had felt part of their family,
so the feelings of insecurity came back and my subconscious gave me the back pain
which led me to learning about Dr. Sarno and TMS.

Mala is right that many or most doctors don't know why we are in pain because
they don't accept TMS as the cause.

Practice deep breathing and meditation, and yes, also take medication if it will lesson the pain.
 
Mala said:
@winterhaven123

I'm very sorry to hear about what u have been & r going thru- the pain, the unnecessary surgery, the unsympathetic doctors & the whole uncertainty of what is going on.

The diagnosis of somatoform disorder simply means pain that cannot be diagnosed so when doctors say this they generally do not know what is going on. This however does not mean that your pain is not real, it just means the source is unknown which also means there is a likelyhood that it could be TMS.

The diagnosis of depression doesn't come as a surprise. After all who would not be depressed after they have been thru so much!

So u think u may have TMS which is why u r here & that is good because this a great starting point for many & also a place where u will get a lot of support.

Having said that my advice to u would be to see a TMS doctor first & foremost, as soon as u can if possible- not just a therapist. You need to see someone who is a qualified doctor & a TMS expert. This is very important if u r going to start off on the right foot & it will give u the motivation u will need to get better. U have been thru so much uncertainty that you must get assurance & a correct diagnosis from someone who is qualified to give u that. U need to hear it straight from the horse's mouth that what u have is indeed TMS otherwise any doubt will just interfere with your recovery.

A strong doctor patient relationship is also key in boosting your confidence & belief since u have been bounced around by so may unsympathetic practitioners.

U say u r in Florida & that Scott Brady is not taking any more patients. Would it be possible for u to travel to see someone else like maybe Dr Schubiner with all yr medical records? Although I have never met him personally others here on this forum have & may be able to tell u more about him, but the couple of times that I emailed him he has very kindly & promptly replied in a very reassuring manner. Apparently he spends 2 to 3 hours with each patient & is quite thorough.

I know the logistics of seeing him may be difficult but perhaps u could email him & if u feel that this may be an option then u could see him intially & always follow up with a therapist thru skype.

In the meantime do take whatever medication u feel u need that will help .

I wish u all the best. :)

Mala
Click to expand...
Hi Marla I appreciate your response. No i would not be able to travel to See Dr Schubiner. I wish I could It would be difficult to See Dr Brady even if he was accepting new patience & He is only approx no more than 45 minutes away. I have read & listened to alot of DR Sarno's books & audio where He states TMS pain is the most painful pain in medical. My pain is totally disabling severe & constant The only relief is lying down. I did some research on Peripheral Neuropathy & Neuropathic pain & it happens often where Drs give you the boot because they don't know enough about it or what to do until it causes too much nerve damage they say really there is no correct testing for it. I have read somewhere in one of Steve Ozanich post that peripherial neuropathy is TMS. I have even been to 2 pain management Dr who would not help or do anything for Me because nothing shows they feel what is there to treat if there is no evidence of pain. This is over 4 years now I am unable to go NY i spent every Summer there. I can't travel at all Central Fl here is the Pill mill capital of the US & every Dr thinks your out for Meds. hate Meds & never had to take anything in My life. Prior to this on going _ _ _ _ other than clinical Depression I also have Ptsd I am getting treatment for. I also do accept this as Tms but sometimes you feel how could anything be this bad I know others also have it hard & some are mild Prior to this onset from the mid 1990's to 2002 I had intense itching & severe, severe swelling in my hands & feet i coulent even stand on my feet or walk they were so swelled up after about less than a year after my divorce that stopped. So I know that was TMS My nerves. Now this that is so much more painful & intense & years the last 15 years More & more Trauma Thanks for your support Judy
 
Walt Oleksy said:
Hi again, Winterhaven. If seeing a TMS doctor is not possible, have you done the
Structural Education Program? I think you need convincing that your pain is from TMS
and that will help you to believe in TMS. It takes total, 100 percent belief.

The SEP encourages us to journal about repressed emotions that often go back to our
childhood. That was the case with me. I never realized how insecure I felt when
my parents divorced when I was 7 years old. But I had repressing that, and believe my
back pain came when very close friends divorced. I had felt part of their family,
so the feelings of insecurity came back and my subconscious gave me the back pain
which led me to learning about Dr. Sarno and TMS.

Mala is right that many or most doctors don't know why we are in pain because
they don't accept TMS as the cause.

Practice deep breathing and meditation, and yes, also take medication if it will lesson the pain.
Click to expand...
Hi Walt Yes I have complete the SEP program once before but started again digging deeper & accepting this for what it is TMS . I also have been doing meditation a couple times a day! Thanks Judy
 
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