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intercostal Neuralgia? Peripheral Neuropathy? severe burning anyone else?

Discussion in 'Support Subforum' started by winterhaven123, Mar 23, 2015.

  1. winterhaven123

    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
  2. Mala

    Mala Well known member

  3. winterhaven123

    winterhaven123 Peer Supporter

  4. Ellen

    Ellen Beloved Grand Eagle


    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....
    Lizzy likes this.
  5. winterhaven123

    winterhaven123 Peer Supporter

    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.
  6. bagofwater

    bagofwater Peer Supporter

    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.
  7. Ellen

    Ellen Beloved Grand Eagle

  8. winterhaven123

    winterhaven123 Peer Supporter

    Hi what type of pain do you have? Ellen just sent Me the list of practitioners .
  9. winterhaven123

    winterhaven123 Peer Supporter

  10. Mala

    Mala Well known member


    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. :)

  11. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    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.
  12. winterhaven123

    winterhaven123 Peer Supporter

    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
  13. winterhaven123

    winterhaven123 Peer Supporter

    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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