Some info only generates more fear.. And more pain...

[plum]

Hi lunarlass,

I just read this thread and felt compelled to respond. I wanted to tell you you're not alone and no, you're not psychotic or a freak. I think I'm in a similar place to where you are. I had surgery on my thoracic outlet 6 years ago and the pain caused me to lose everything. My life has been severely limited for years. Lost my job, house, savings, most friends and I have very little family left. One of them took me in after my surgery and lost my house thankfully, otherwise I would have been homeless. I have no other half either and have been very lonely through all of this. My dream was always to settle down and here I've been still alone through it all. I gave up a few years ago on everything but learning about TMS has given me some hope back. Though lately I'm feeling stuck too and confused about other issues with my health that may not be TMS. I'm trying to get to the bottom of it now though but it's been hard and very confusing.

I've been very isolated and mostly homebound for a long time as well and want more then anything to be able to get everything back. I know you do too. I dream about the day I can get another job and support myself again. The other issues that may or may not be TMS related have also severely limited my life and is making it so hard for me to try to move on.

Some days, like today, I feel like I'm going crazy. I'm sure some must read my threads here and might think so too; I know I'm really not though. I don't even sound, think or write like how I used to. It's hard to even see through this constant fog I'm in to try to figure out what else I should be doing besides waiting to see doctors that I no longer wish to deal with for these other issues that may or may not be TMS. I've been so scared and confused too even though I recognize the fear just makes things worse.

I'm not exactly sure where I'm going with all of this to be honest. I just wanted to tell you that there are others who feel the way you do and are where you are. Sometimes I read threads looking for someone else who is in a similar position as I am; has lost everything, feeling stuck, etc. Sometimes it just helps to know that you're not alone I guess. Each person's story is unique but sometimes it's hard to find that story to relate to. I feel like that's where I've been lately. I look at success stories like Plum's when I need a booster of hope. It always helps.

I haven't read Dr Hanscom's blog post that you mentioned. Maybe I will but no matter what it says, I do believe there is hope for all of us no matter where we are or where we've been or what we might be currently going through. There's amazing stories of people who have overcome all kinds of adversity and changed their lives for the better. Sometimes through seemingly impossible situations. When I get down about any of this lately and I really do, I remind myself that if they could do it, than so can I. So can you. It may just take a little more time then what we would like but I still believe that.

Sending you healing thoughts and prayers. ( hope that's OK, you mentioned prayer in your post)

JulietBlue,

I send you my love and assurances that you can heal and go on to create the life you desire. Many of us spend a lot of time spinning our wheels and going nowhere. I certainly did this for years. If I can pull back, I am confident anyone can. I wish I could scatter magic dust along your path that would take you all the way there. What I can do is drop words like breadcrumbs in the hope that they bring you to a clearer path, one that you recognise as healing and from there...godspeed. And don't worry, no one ever thinks these kind of posts are crazy. You may be surprised how many people feel like this below the surface of the well-crafted persona. It's kinda the reason we're all here, at least at the beginning.

Plum x

 

[plum]

Just want to say a huge, gigantic thank you to you Plum.. For the wisdom, gobs of compassion and love you selflessly give to all of us every chance you get...you have fast become my hero..
Thank you, thank you, thank you!! ( this emoticon looks so much like a happy little plum...xx)
With love, Nancy

You are ever welcome my love, and thank you for your generous response and sweet sensitivity.

from a happy little Plum xxx

 

[JulietBlue]

Thank you so much for your kind response Juliet Blue.. ( pretty username)
I too often feel like I am going crazy, the pain overwhelms me and all I can do is sob and sob and ask God, no BEG God to help somehow. I keep asking why He has chosen this path for me and the purpose in all I have had to give up because of the chronicity of my condition.
I miss life... My old life. My boyfriend often engages in fun activities without me (band practice, baseball games, picnics, concerts)... I was active and able just two yrs ago. I can't understand what happened. I'm 51, yes, but aging is SUPPOSED to occur gradually, not instantaneously...
I HATE knowing so many kind, loving people HURT... And I wish YOU health and healing as well and please feel free to message me any time at all, we can all support each other's journey... With love, Nancy

Thank you so much, Nancy. I feel the same way. It seems to me that the people who suffer from TMS are among the very best people you would ever hope to meet in this life. We are so good, loving, kind and compassionate to everyone else I guess but to ourselves and there's where we run into trouble. This is something I need to work on myself. It can be a hard concept to learn when you've never done it before and I'm finding it does take time.

I've been doing a lot of praying and begging to God myself. I feel the same as you, I want my life back too. A better life actually because from what I remember of it, it wasn't so great. I look back now and I realize I was doing a lot of running from my pain, anxiety and depression. Which ended up making it all worse of course along with all the doctors and different medications.

I also have suffered from a lot of the same conditions as you and Plum. Just a few are TMJ, Migraines, Insomnia ( severe now for a good year at least), anxiety, knee pain and surgeries, blurred vision (have this as I type), face swelling, sore throats, Shoulder and neck pain, well the list goes on and on. The scariest one for me the last 7 or 8 months has been brain fog and cognitive dysfunction. This one scares me more then all of the pain.

So yeah, I can definitely relate to the feeling like you're going crazy and trying to figure out symptoms. I think Plum is right when she says it may not be our privilege to know exactly how the mind and body interconnect and we need to try to stop tying ourselves in knots over it. I unfortunately have been doing just that too. Fear can be such a powerful thing.

I pray all of us our healed. We all deserve it and please feel free to message me anytime as well. We could all use more support and outside of this forum, it's almost impossible to find anyone else who understands or is even interested to know what we are currently going through.

Thanks for the complement about my username. In my former life I was a stage actor and I took the name of a character from one of my fave Shakespeare plays and my fave color. I dream of getting back to all of that some day.

Sending you healing prayers and hugs for now.


JulietBlue

 

[JulietBlue]

JulietBlue,

I send you my love and assurances that you can heal and go on to create the life you desire. Many of us spend a lot of time spinning our wheels and going nowhere. I certainly did this for years. If I can pull back, I am confident anyone can. I wish I could scatter magic dust along your path that would take you all the way there. What I can do is drop words like breadcrumbs in the hope that they bring you to a clearer path, one that you recognise as healing and from there...godspeed. And don't worry, no one ever thinks these kind of posts are crazy. You may be surprised how many people feel like this below the surface of the well-crafted persona. It's kinda the reason we're all here, at least at the beginning.

Plum x

Plum,

I can't thank you enough for your kind and loving response. Your words and assurances provide me much comfort and this sure isn't the first time. I pray that you are right and I can find my way out of all of this. I also wish magic dust was a real thing. I'd be throwing that stuff everywhere!

 

[plum]

I also have suffered from a lot of the same conditions as you and Plum. Just a few are TMJ, Migraines, Insomnia ( severe now for a good year at least)

A quickie for now but do take a look at this success story written by @Ellen on overcoming chronic insomnia. Actually that's one I missed off my list. I've had insomnia too. Dreadful experience.

http://www.tmswiki.org/forum/threads/recovery-from-chronic-insomnia.16653/#post-87666 (Recovery from Chronic Insomnia)

 

[JulietBlue]

Thanks Plum,

I did read Ellen's post but I think it wouldn't hurt to read again. The insomnia is actually one of the causes of my confusion lately. I've always had some form or another but it usually came and went in spurts and I'd have some nights in between where my sleep was pretty normal. But in the last year since a lot of other of these really strange symptoms have popped up, that's been one of the worst. I've tried everything including some of Ellen's tips lately. I have so many symptoms of a thyroid or hormone issue as well although I'm getting tested to find out, I'm trying not to think that that's what it is but the symptom match up is undeniable. Even the endo thought so upon examination. My glands are pretty swollen and I have a sore throat more often then not. All that and more seemed to come on last year after I got off a medication that's been known to cause these types of problems. Since learning about TMS, I've been trying to treat all of it as if it were but these other symptoms are hard to ignore. This is why I've been so confused I guess lately. I can't really talk to the endocrinologist about TMS either. I get the sense that she's never heard of this kind of thing. I just told her I've suffered from chronic pain for a long time and it's recently gotten better after I stopped some of my medications. So I'm not sure anymore. I know the insomnia I've always suffered from is TMS but this feels like a whole different animal. I honestly don't know anymore what's what. The pain is the only thing I've seen some improvements in since I started this.

Has anyone else dealt with any thyroid or hormone issues by chance? I have so many of the symptoms it's hard to ignore. I'm trying my best to be patient until I can see the endo again and get my results but it's hard.

Thanks again for the link to Ellen's post, Plum. You really are an Angel.

 

[Ellen]

Has anyone else dealt with any thyroid or hormone issues by chance?

Hi Juliet,

I was treated for thyroid and hormone issues along the way. The symptoms can be very similar to TMS, so it is natural to want to check it out. The treatments didn't help my symptoms at all. The only thing that has helped me is treating everything as TMS. Not an easy path, but the only one that worked for me.

But it is good to rule it out for yourself. Doing so can help solidify your belief and commitment to a TMS approach.

 

[JulietBlue]

Thanks Ellen, I really appreciate your response. Can I ask you if you had the swelling in the front of the neck, or I guess what they call a goiter? Sounds weird but I never had this swelling around chin and glands until this new batch of symptoms started last summer. Even with all the pain I still felt like me and had interests and all of that somehow before. I still felt and looked somewhat like me. Most of the time anyway. Of course the endo is taking her time while I wonder every day if I'm losing my mind and trying to stay calm, tell myself it's TMS etc. I still have another 2 weeks to wait.

Thank you again, Ellen. My apologies to Nancy, I didn't mean to hijack your thread.


Xx

 

[Ellen]

Thanks Ellen, I really appreciate your response. Can I ask you if you had the swelling in the front of the neck, or I guess what they call a goiter? Sounds weird but I never had this swelling around chin and glands until this new batch of symptoms started last summer. Even with all the pain I still felt like me and had interests and all of that somehow before. I still felt and looked somewhat like me. Most of the time anyway. Of course the endo is taking her time while I wonder every day if I'm losing my mind and trying to stay calm, tell myself it's TMS etc. I still have another 2 weeks to wait.

Thank you again, Ellen. My apologies to Nancy, I didn't mean to hijack your thread.


Xx

Yes, swollen lymph nodes in my neck are something that come and go for me. I don't think that was a factor, though, when I was evaluated for thyroid problems. It was based on a blood test (low normal) and my other symptoms. Never had a goiter. If you have a goiter then it's good you are getting it checked out. Always good to rule out medical issues first. I think this condition is very treatable medically.

 

[JulietBlue]

Thanks for answering that for me. I'm not exactly sure it's a goiter per say. I see pictures of others where it's much worse but my glands are certainly big or swollen and are like that pretty consistently now. Hurts when I swallow or when I don't even. I just got lab results back yesterday but not sure what they mean. Everything looks on the lower end of normal except cholesterol levels are very high but I've been eating super healthy for a while now and exercising at least more then I was. So yeah, guess I won't know till I know and just have to be patient but it's definitely no fun waiting and feeling like this. I also hope I'm seeing the right doc. I have so little faith in them these days.

Thanks again for your support. It really means a lot right now.

 

[Lunarlass66]

Thanks Ellen, I really appreciate your response. Can I ask you if you had the swelling in the front of the neck, or I guess what they call a goiter? Sounds weird but I never had this swelling around chin and glands until this new batch of symptoms started last summer. Even with all the pain I still felt like me and had interests and all of that somehow before. I still felt and looked somewhat like me. Most of the time anyway. Of course the endo is taking her time while I wonder every day if I'm losing my mind and trying to stay calm, tell myself it's TMS etc. I still have another 2 weeks to wait.

Thank you again, Ellen. My apologies to Nancy, I didn't mean to hijack your thread.


Xx

That's quite all right... Everyone's insights and issues deserve to be heard... Hope you feel better soon... Nancy

 

[plum]

That's quite all right... Everyone's insights and issues deserve to be heard... Hope you feel better soon... Nancy

And this too, sometimes it's especially helpful and healing to become involved in "someone else's" thread if their concerns are germane to us. In joining in and offering a different perspective and experience it can help shift and unspool big fears and niggling concerns vicariously. We don't have to face everything head-on, sometimes a sideswipe is more effective. This is certainly beneficial if we have layered and complicated problems. There is nothing new under the sun and I do like to see old threads resurrected by new people grappling with similar issues. I think this better than endless new threads because it enables us to deepen and enrich our knowledge while simultaneously realising we're in good company.

 

[Balsa11]

Dear, dear Plum,
As I read your loving reply, I felt overwhelmed by the warm kindness and compassion in your words. I have to be honest. I'm not at all used to it. I know I beat the shit out of myself everyday.. And I have all my life, always trying desperately to get people to see any good in me.
With the chronic pain these past few years, it's gotten all that much easier to self loathe. I'm sad, mad, scared, hopeless.. Every negative feeling possible all at once.
I've grown to like the analogy of "the rabbit hole".. It's become my new residence. I feel like I've been trying with every thing I have to recover from it all. I've never had so much physical pain in my life. It almost seems more painful than any PHYSICAL issue COULD be. I've given up on conventional doctors, that was a merry-go-round from hell and only perpetuated more symptoms..
I DID embrace Dr. Hanscom's protocol initially, but his explicit descriptions of the damage chronic pain can do leave me nearly hysterical in tears and literally lock up my already bad back....
Truth is, I'm terrified. My surgery of 22 yrs ago left me with permanent MENTAL scars.. The last spine guy I saw, after reading my reports, said "normal wear and tear"... But the images of all the abnormalities STUCK... PTSD, i believe... And also physical, BOTH overlapping. Further surgery would weaken my spinal structures even more, a risk I am not willing to take... And though conventional MDs would argue to the contrary, I believe menopause and the loss of estrogen have reduced my body's natural defenses against pain and inflammation...
Oh God, I'm just so hopeless and overwhelmed... My poor boyfriend(though he has addiction issues and can be abusive at times) .. I don't have relatives, so he takes the brunt of my hell.. I didn't know a person could cry or hurt this much and still be alive.
I'm sorry Plum... I don't mean to unleash all my misery on you. Your posts are always so profoundly warm, understanding and kind.. They open my flood gates.. It's impossible not to love you, even from across the pond. I often think of the loving way you care for your guy, and the miracle the two of you have made, despite those damn doctor's grim prognosis... You're a living angel.

In terms of environment to do TMS work, you're simultaneously dealing with your own struggles and trying to be with someone who has his own issues. You need a better home environment and better company in some way.

If something does show up, TMS work will help you heal too. It's ok to let your doctor know if they're open to mind body or stress issues. You can also work with a TMS doctor or therapist as well if that's affordable.