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Includes Expert Content

Reply: Dr. Maine - Occult Tethered Cord Syndrome (TCS) Is...

Thanks for the repy. It felst wierd to read it 3 years later. So much has...

Posted by findingpeacewithpain

Thanks for the repy. It felst wierd to read it 3 years later. So much has hpapened.....Re reading felt somewhat depressing as no much has changed sicnce that post. I am still in pain 24/7 my back and legs, hips and migraines. I have had a few things done.
2 buinion surgeries (aug) and (sept2012 ) as the 5 pins didn't heal the break - there was a bone cysts that had formed. So they re did the whole thing and it meant 6 weeks off my foot again. With boys ages 7 and 4 and a husband I needed a wife to look after everything! I got a nannie and it all went well enough I guess. 4 months later I needed another one that didn't go so well but we all managed. I had to re take surgery and get rid of the bone cyst... That sucked. It was also the first sign that something was going - not everyone forms large cysts like that. My ortho lady it was from taking too much advil. Whatever!
In the meantime, I developed a hernia. the docs gave me a cat scan to see my hernia had blood passing in it to get it removed.
They saw my lymph nodes around my lungs and ribs were enlarged. in a biopsy they found out I have Sarcpdosis - it is an autoimmue disease that makes the lymph nodes around your organs enlarge and calcify into stones. It can be painful and cause feeling of unwell, tiredness aching, etc.
Anyways, they did a bone scan last week to see if it is in my bones. I still struggle everyday but I am teaching 2 hours a day and sort of keeping up with my responsibilities. The meds make me function but I don't want to cope anymore I want to live.
Going to the pain clinic never would have investigated to find anything that could be causing all this pain. They just list me as depressed, anxious and that I have a chronic pain symdrome with somatic ongoing symptoms. Thaks that helpful! Not
I am glad I am still searching for answers and hopefully something they can fix or at least manage better. Otherwise Ifeel hopeless and we all know what that makes you feel like.

I hope you are doing well. Thanks for reminding me that people care and some people even know what it is like to live with pain. It helps me not feel so isolated and alone. Please keep in touch and I will keep you posted.
My family doesn't talk about my issues much. My dad is the only one who is actively involved with me. He is also the one I feel most ashamed around because he is so interested in fixing the problem I feel guilty that I am forever wasting his time and nothing gets better but they keep finding new things wrong. Arghh. It is so frustrating. I love all my family they have stood by me. I just feel judged and talked about by them (probably my porblem). Their heart is in the right place, they just don't know what to do and it is all a bit unbeleivable. They think I would be better if I was off medication and if I didn't swell on things. Easy for them to say. All we can do is keep on smiling and trying to do our best.
Thanks again, LisaView Thread

Posted byfindingpeacewithpain

17 Replies | Reply | Watch This DiscussionReport This| Share this:Dr. Maine - Occult Tethered Cord Syndrome (TCS) Is it true? What is it? Thanks for the repy. It felst wierd to read it 3 years later. So much has...

Reply: Strong non-narcotic pain killers?

Thank you CTbeth you are right. It is none of their business. No one can...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Thank you CTbeth you are right. It is none of their business. No one can...

Reply: Strong non-narcotic pain killers?

Thank you for this wonderful responce. I too am in unrelenting pain all the...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Thank you for this wonderful responce. I too am in unrelenting pain all the...

Reply: Thoughts on Pain Management Clinic?

That sounds like it must have been awful. I have been there. I have never been...

Posted by findingpeacewithpain

201 Replies | Reply | Watch This DiscussionReport This| Share this:Thoughts on Pain Management Clinic? That sounds like it must have been awful. I have been there. I have never been...

Reply: Strong non-narcotic pain killers?

Hi Susan, Thanks for your reply. I am about the same 5 hard days and 2 not so...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Hi Susan, Thanks for your reply. I am about the same 5 hard days and 2 not so...

Reply: Strong non-narcotic pain killers?

unfortunately I live in constant pain too. I am being looked at for...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? unfortunately I live in constant pain too. I am being looked at for...

Reply: Strong non-narcotic pain killers?

Thanks so much for your reply. You do get it then if you have had the same...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Thanks so much for your reply. You do get it then if you have had the same...

Reply: Strong non-narcotic pain killers?

Hi Becky Thanks for your reply - it feels good when someone can relate to you...

Posted by findingpeacewithpain

Hi Becky Thanks for your reply - it feels good when someone can relate to you on things like this. I am sorry to hear about your abdomen I bet that complicates things because weight is just hard on the body in so many ways. The drugs are always a catch 22 for me. I take them but I still suffer daily. I hate the stigma attached and I hate the way they make me feel. I too am unsturdy and spaced out and my memory problems drive my husband crazy. The whole thing is embaracing and I am very ashamed that I let it get this far. I take 60mg of oxycontin 4 times a day and 10mg oxycodone 3 or 4 times a day. I am also on cymbalta and zoplicone to help sleep. I have been up night with pain last night and that is what drives me crazy.......i take all this and the pain is not taken care of. I guess it makes me function and I can't imagine what it would be like without it but why do I still feel so bad?

Alas, there are yet still more complication with meds. I recently had a biopsy of my lymph nodes in my sterum and found that I have sarcoidosis. It is an auto-immune disease that has my body in a constant state of inflmation. It gives you swollen lymph nodes all around your tissues and organs that eventually granulate into hard pebbles. It explains a lot but so do lots of other diagnosises but the docs just keep giving me pills and never fix the problem. My MRI of my lungs show nodules in my lungs that looked like a "snow sotrm or blizzard" but the nodules were too small to biopsy. This was before Xmas and I still haven't seen a doc. I see her on April 15 thank goodness. The complication is that I have COPD and the narcotics are not good for lung function. I have a hard time coughing. I don't know what she will say or what she will give me instead but I am scared. I know prednezone will need to happen.

Anyway, I could go on and on. Thanks for listening. the replies I got were very reassuring and surprizing as I am so used to my relationships giving me no dialogue about any of this and then you guys / girls just know just what to say. Thanks....sorry it took so long to reply I have been in Disney land and palm springs for spring break.View Thread

Posted byfindingpeacewithpain

(FromChronic Pain Management: Member Discussion)

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Hi Becky Thanks for your reply - it feels good when someone can relate to you...

Reply: Strong non-narcotic pain killers?

Hi I have had pain for 25 years since a fall off a horse and degenerative disc...

Posted by findingpeacewithpain

164 Replies | Reply | Watch This DiscussionReport This| Share this:Strong non-narcotic pain killers? Hi I have had pain for 25 years since a fall off a horse and degenerative disc...

Reply: I'm tired of my pain n cant take it any moor!!

I feel your pain and I am sorry that you feel trapped and controlled by the...

Posted by findingpeacewithpain

28 Replies | Reply | Watch This DiscussionReport This| Share this:I'm tired of my pain n cant take it any moor!! I feel your pain and I am sorry that you feel trapped and controlled by the...

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