Ashley A
Peer Supporter
Hi Ashley. You may not remember me, but we had a few exchanges a while back now. I am glad you have posted your issues again on this forum, which like you I have been absent from for a while. It gives me the opportunity to make contact again. Our experieces are so alike. I fact identical! I did message you recently, to see how you were, but had no response.
I assumed you did not want to go over old and difficult experiences. I think it would be helpful for both of us to compare notes. It is always comforting to discuss this subject with s fellow struggling TMSers. Just to recap, I have also had this pain issue for three and s half years and mine is also in my upper back around my right scapula. Therefore I totally relate to you. If it helps, I can detail more by elaborating. It is pretty much constant with a few exceptional periods. It principally takes form of s deep dull ache on and around the inner edge of my right scapula, but more recently had spread on occasions to the left side and a bit lower on both sides. It can also feel very tight, tingly, sore after activity and sometimes a kind of stinging or may itch so it does change in its sensation. Maybe you can relate to this yourself?
Also I remember you had tried duloxetine and it helped a bit with the pain. I did too but weaned off, but now giving it another try at s higher dose , 60mg. It has not worked much so far though! Have you kept off the duloxetine? It is not a nice medication, but I had to try something! Also, I believe that TMS is really anxiety presenting with physical symptoms. Anxiety/ fear of the way you constantly feel and think about your symptoms is the driver of those symptoms. However, then the doubt kicks in again and again and the never ending cycle goes on and on. I know fore if I could accept the pain and other sensations and be indifferent, I would be cured, but in three and s half years I have not been able to achieve this? My anxiety physical symptoms are always highest when I first wake in the morning and I believe this is due to a normal peak in cortisol in the system. It would be good to pm with you to see how you are doing.
I have posted this hoping it gives you a bit of comfort knowing others have exactly the same symptoms as you, even though I have not yet found my way out of this complex problem. I hope you can resonate with my tale?
Best wishes Fred
Hi Fred!
I’m so sorry that you too are still struggling. It can be quite a long road. I did really experience quite a lot of relief in 2019. Unfortunately 2020 brought a lot of trauma back into my life. Obviously the pandemic, which greatly effected my husband’s job but also in many areas of our lives with several medical emergencies and losing our home, just to name a few. I mention that not for pity but because I 100% believe that’s what pushed my progress back, otherwise I don’t believe that I’d be experiencing this flare-up right now. So I want you to still have hope - I made great strides in my healing journey and I believe that I still will, there’s just been a lot of set backs and stressful situations. That means that there is plenty of hope for you as well! It’s a tough journey but one that’s worth it.
I did end up tapering off of the Duloxetine and was off from it for 10 months. In that time I experienced some of my first pain free days ever! So that was a HUGE win for me. Due to the stressful events of 2020 I ended up going back on it in October of last year, however I am currently tapering off of it again (another contributing factor to this flare-up I believe.) It’s not a fun medication but one that I feel has been necessary as part of my journey.
I too believe that anxiety and fear and focus are what’s really behind all of this. I struggle with that a lot. It’s hands down the most difficult aspect of TMS for me.
Something I feel worth mentioning - I completely accept TMS as my diagnosis and I know that I have absolutely NO tissue damage. Have you been able to get there yet? If you can and can lose the fear and focus I think that’s the ticket! I’m half way there because I believe, but I struggle a TON with fear and focus and I think that’s what’s keeping me stuck.
I’d be happy to PM with you more whenever you’d like. Happy we’ve been able to reconnect, but wish it was under better circumstances for both of us.
Best wishes to you!
Ashley