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I need support :(

Discussion in 'Support Subforum' started by jsabina, Apr 24, 2018.

  1. jsabina

    jsabina New Member

    Hi everyone,
    I am new on this forum and to the TMS idea.

    I will try to give you an idea of where I am coming from, this will be long but will try my best to keep it short.

    I am 36 and since many years suffer from anxiety, health-anxiety plus some related problems (mainly lump in throat, reflux). This all started after my mother was diagnosed and died 4 years later of ALS. I was 22 and her main carer.

    In December 2016 I started experiencing twitching in my right arm after some new arm exercises at the gym, the same where my mother started to have problems to before being diagnosed. I went straight away in super panic mode (not the first time I panicked about having als though), and after 10 days of hopeless crying I went to see an expert neurologist.
    The visit was clean but I insisted for an EMG. The EMG was clean... everybody said twitch will go away.
    The twitch didn't go away.
    I kept obsessing, but trying to live my life, with some relapse of high anxiety and crying mode hopeless.
    I started to feel some pains here and there but nothing major.

    Fast forward.
    January 2018. For some psycological reason I went again in panic mode about ALS, the twitches had never stopped anyway. I went to a physio which did some test and tried to convince me I was fine.
    But I kept being in a very bad psychological state.
    After 20 days of this, crying, anxiety, insomnia, couldn't eat properly etc, I started having pain in my left bicep.
    Weekly physio visits didn't help. Kept worrying A LOT.
    Started to have pain going around. Plantar fasciitis, right elbow, wrists, right ankle.
    RM to the neck showed a mild protusion C5-C6 but no nerve involvement.
    Things would come and go but persist quite long.
    Went to doctors nothing done really.

    At the beginning of March, after sitting for days at home, started having a crazy pain in my right buttock.
    A terrible pain. And to the ankle.
    Went to two different GP, ER, physio.
    They said muscle spasm, contracture.
    I was desperate, no tablet could help. Physio massage.
    After a couple of weeks the terrible pain lessened, but I Was still in pain.
    Went to a neurologist, still worried about ALS, he said all was ok and just anxiety to not do any further exam. Went to a phisiatrist, said I have tilted pelvis/lordosis and prescribed physio.
    Nobody worrying.

    Anyway, now it is two months and I still have pain in my buttock.
    It's not terrible as the first 10 days, but it is still there and very annoying.
    The worse when sitting. And I always had a terrible posture and work at computers.

    I started swimming (I was running before, but stopped when all the pain started).
    Swimming actually makes the pain worse the day after :(
    But I want to continue and physio said it's ok.

    A friend of mine told me about Sarno and I started reading the book, forums, success stories etc.
    It does make a lot of sense to me, but I can't say I am 100% there yet.

    I am quite sure I have nothing structural bad with my back, or even if there is a protusion I don't think this is the main cause of my pain. I did a lot of reading on this.
    My main anxiety is around neurological stuff, but I read TMS also affects nerves, and this gives me hope.
    Every doctor I see and the neurologist (expert in ALS) tell me I have nothing to worry about neurological stuff.

    I have been crying and crying and trying to do my best every day to overcome this.
    After the neuro exam I started feeling much better psychologically, but pain persisted.

    They want to change my antidepressant (yeah I take one for many years but it's doing nothing) and I am afraid to change and I don't think it makes sense to mask the pain.

    I am so scared that this pain will never go away.
    I was so scared of the dreaded illness and terminal stuff and thinking nothing else could scare me more.
    But now I am crying because despite my efforts pain is there and I am unable to accept it.

    I know it all started with the anxiety and fear of the illness.
    And maybe this is still the cause.
    I have done psychotherapy but stopped at the moment.

    Will keep reading about TMS, want to start journaling, but I need some help and support and hope.
    Now the pain is stable in two places. Is it still compatible with TMS?
    Left bicep (not too crazy bad) and the right buttock-thight harmstring - especially bad sitting and driving.

    I admit I am still doing some physical therapy, activation points now for hip flexors and glutes..
    all I have done until now didn't solve it.

    Any words are appreciated and sorry for the lenght of the post!
  2. Ellen

    Ellen Beloved Grand Eagle

    It sounds to me that fear of having ALS like your mother is driving your TMS. Completely understandable given your history. Have you tried Alan Gordon's Pain Recovery Program? Free on this site at the link at the top of the page. His TMS program is focused on fear and ways to reduce it, so I feel it could be very beneficial to you. Also, doing a structured program where you work a little on your TMS everyday in a methodical manner is what helped me. Either the Structured Education Program (free on this site) or Dr. Schubiner's Unlearn Your Pain are excellent.

    Hang in there. Recovery is possible. It takes patience and persistence for most of us. There are many tools to help you through it.
    plum, Ewok2, jsabina and 1 other person like this.
  3. Gigalos

    Gigalos Beloved Grand Eagle

    I agree with Ellen, you are in a vicious cycle of fear that is driving your fear inducing symptoms. You might also still need to process some strong and unexpected emotions of anger, guilt and sadness about all the things that happened to you and your mom, but you don't allow yourself to have them as they might appear selfish or wrong to you. For example, you might repress being mad at your mother for leaving you, which might sound awfully selfish to you but which is a very normal emotion to experience as a human being. Anyway, you can go many ways with this, just have a look at the programs/books that Ellen refers to.
    Btw, twitches are pretty common and they will disappear when your tension level goes down.
    Take care
    plum, jsabina and Mary80 like this.
  4. Mary80

    Mary80 Peer Supporter

    I agree ... Dr. Shubiner's program is fantastic. Along with the book "unlearn your pain" you will also find the meditations with the doctor's voice ... on several occasions listening to his voice made me pass the pain! I was speechless ... and then it is natural sedative :) .. He was the only one that could calm my nervous system. I read Dr. Sarno and now I'm here and I'm doing Alan's program...
    I've done many medical care and they have not worked..for 2 years I'm studying programs and techniques about TMS and now I feel better, some symptoms are leaving some don't.. It takes time and patient like Ellen says.
    It's a battle and there are many ups and downs, but you're in the right place now..so don't beat yourself up
    a big hug :)
    Last edited: Apr 24, 2018
    plum and jsabina like this.
  5. jsabina

    jsabina New Member

    Thanks both for your quick reply and the patience to read the long thread!

    I am aware since many years that the cause of my psychological distress is what has happened and I am quite sure that most of my symptoms are driven by rhat.
    I can't say 100% because yeah, still quite anxious.

    I tried psychotherapy for quite long but haven't found yet a solution.

    I quite agree that I need to process strong emotions.. rage guilt or sadness.. I haven't been done to do it while all has happened because of my personality..

    BTW the neurologist sent me to a psychiatrist which diagnosis has been "post traumatic stress desease chronic".
    It is strange but they all kind of agree that this is the main trigger of my problems!
    Even the mainstream doctors!
    But the psych told me to not do psychotherapy, just take medications until I feel better, they will mask the pain and after that I can work on the psychological side.

    I don't quite agree with it.. so I am willing to explore the links and books you have suggested!

    I am just back from the swimming lesson.. even though before going I was, ashamed to admit, crying because of the fear tomorrow I will feel worse.

    But I still went.. I can't let this lead my life.. it's five months I am obsessing on pain and I already stopped running for it..

    I am so glad to have found this forum and you people.
    I might post a bit because I am sure I will struggle and just writing helps me to take out some of the thoughts..

    I hope also to give back to the community soon helping other people!!
  6. Mary80

    Mary80 Peer Supporter

    just something I want to tell you. . . my advice is to also read Peter Levine and what he says about post-traumatic stress disorder and somatic experience. . . You have to free all the emotions you've compressed to date. . and it's an important job.
    Start thinking clean. . . it's not swimming's fault it's not the fault of the race it's your emotions that are overflowing because they've been too long forced and locked up. You have to start changing the way you feel emotions. . today you're not feeling . .you're frozen. This is the problem.
    plum and Lainey like this.
  7. jsabina

    jsabina New Member

    Learning to feel emotions is not easy.
    I switch from trying to react and being strong which might mean being frozen, to be desperate hopeless scared and crying.
    It's quite long I have had this pattern (usually the desperate phase lasts few weeks and it came once or twice a year.. but since the twitching and especially in the last 4 months it's a bit of a constant).

    I am not sure yet where is the healthy way to feel emotions.. if I am desperate for long, as I have been in Jan, I start having phisical problems from not sleeping not eating and struggle to work to work etc.. so I try to react and think positive.. and maybe this freezes myself from feeling emotions?

    Hard to say and to learn.

    But I have seen there are some topics about it on the forum and all the readings you have suggested as well!

    I would have loved to see a TMS therapist in person.
    But I am based in Ireland and the only one here is not a doctor and for some reason I still prefer to see one that it is.
    I have seen there is one in the UK.
    I spent so much money these months for physio (and my dog has been diagnosed limphoma.. spending a crazy amount of money for his therapy)... But if I can I might try to go and see him!

    I know there are skype sessions, but you know, I d prefer someone who can do a phisical visit as well.

    (Sorry for my writing mistakes.. I am not English native speaker :) )
  8. Mary80

    Mary80 Peer Supporter

    Do not worry, I'm Italian and I try to do my best in writing.
    It is not difficult feel an emotion. We have forgotten how to do it. . . or we do not want to feel the sensation because it is painful as in the case of sadness or it is not something as good as in the case of anger.. mainly these are the ones we tend to repress. I try to explain...
    what do you feel physically when you embrace a person you love? what do you feel when your dog comes to cuddle you? Take a test and embrace a person you love and listen to what your body tells you. . . this is emotion!
    an emotion is primarily physical and has nothing to do with the conscious mind. if you feel sad you must not distract, if you feel angry, you must not repress anger. . . you have to sit down with what you feel and listen to it. I have been doing this work for myself for a while. Slowly, I'm moving forward.
    When you read all the books you will see that everything will be clearer. . . for anxiety here other members recommend Claire weekes. I bought 'hope and help for your nerves' and I found it very well even though I still have not overcome the problem. . The principle is the same ...going to meet anxiety and to meet the pain and listen to them.
  9. jsabina

    jsabina New Member

    Thanks a lot Mary!
    BTW I am Italian myself as well :D

    Yesterday I was listening to a song.. which triggered some emotions which were in theory positive and.. it made me cry!
    It was a while I wasn't crying and in this case it was not for desperation but for something the song had triggered.. even if it was a positive one!

    Ah, I have so much work to do!.
    Gonna start somewhere and I hope to have patience and persistence!
  10. Lainey

    Lainey Well known member

    Ah, I have so much work to do!.
    Gonna start somewhere and I hope to have patience and persistence![/QUOTE]

    Hi again Jsabina
    Just read you other posts. So sorry about your Mother and your sweet dog. Life is full of so many tragedies. It sometimes seems there is no way out of the mire. You are on the the right track with your search on these TMS posts.

    Your care of your mother was a wonderful thing for you to do but your body/mind suffered through her suffering. I am not surprised that you developed so many varied symptoms after you lost her. You need to explore the connection to your role as caregiver to the suffering you are now enduring. You can find a way out of this. You lost your mother when you were young, now your beloved dog is also sick. These events are not minor.

    In your exploration of the reasons contributing to your pain you may discover much anger. This too is okay. Write down thoughts and emotions if you wish, destroy them or not, but at least start to connect the dots of when/why these pains you have began.

    You can be patient and persistent. You can be okay.


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