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Reply: I need advice..I'm in pain.

I read all of these posts, and it is really kind of comforting to see that none of us...

Kathleen
52 year old mother and wife
Dx 2008 with severe fibromyalgia
MRI reveals spinal stenosis and hemangiomas in the Lumbar region
Dx 9/24/12 with Temporal Lobe Epilepsy

Posted by Twilight0925

I read all of these posts, and it is really kind of comforting to see that none of us are alone in our suffering and frustrations. I started having horrible back and body pain about 4 years ago. My PCP at the time, who I love dearly, sent me to a neurologist who tested me for fibro, of which I have the most severe form possible. I hit all 18 points on his test! She also had an MRI done on my back, and found that I have spinal stenosis and several rather large hemangiomas on my spine. I wish I could offer the specifics, but my new PCP has the records. I was intially Dx'ed while living in Maine (my sons were both going to the same college, and I provided a home for them so that the board fee was not factored into the already sky high costs of that school). I am now back in my home state of CT. And my pain management doctor is floored that no one, not even once, suggested sending me to a spinal surgeon. I have been on 100 mcg Fentanyl patches and a rotating variety of oral opiates for 4 years. I am definitely dependent on them for a half way decent quality of life, but now the back pain is getting worse, and I have to come off the vicoden and go onto something stronger. I will be seeing a spine guy for the stenosis and hemangiomas, but it's a waiting game. I was also diagnosed just this Monday with Temporal Lobe Epilepsy, both sides of the brain. That is another factor, and does explain a lot of things, like my behavioral issues that were classified as Major Depressive Disorder, Major Anxiety, Borderline personality disorder and PTSD. After 4 years of therapy, two self admissions to psych wards and tons of meds, I ended up having 16 sessions of ElectroConvulsive Therapy. I have lost all of my childhood memories and a big chunk of my adult ones.
So you see, we are all suffering, sometimes getting lost in the medical shuffle, and falling through the cracks. Do what you can, get treatment when you can, and listen to what your heart and gut tell you. They are rarely wrong.View Thread

Kathleen
52 year old mother and wife
Dx 2008 with severe fibromyalgia
MRI reveals spinal stenosis and hemangiomas in the Lumbar region
Dx 9/24/12 with Temporal Lobe Epilepsy

Posted byTwilight0925

53 Replies | Reply | Watch This DiscussionReport This| Share this:I need advice..I'm in pain. I read all of these posts, and it is really kind of comforting to see that none of us...

New to the forum, but not to pain

Hello, and thanks in advance for being here. Severe, chronic pain has a way of making...

Posted by Twilight0925

Hello, and thanks in advance for being here. Severe, chronic pain has a way of making one feel very alone. A bit of history about myself. I am a 52 year old wife and mother of two adult sons, who until 4 years ago never really dealt with chronic pain. Then I began to get backaches in the lumbar region. Took OTC meds...but they didn't work. I put up with the pain for a few months, and then finally went to my doctor. She did a work up and decided that I should see a neurologist (???). The neuro tested me and said that I have severe fibromyalgia..I hit all 18 points. My doctor then put me on a variety of opoids, none of which worked. She ended up putting me on Fentanyl patches, 100 mcg every 72 hours. This in tandem with a variety of oral pain meds that are rotated due to my getting tolerant to them very fast. She notes that I am one of the most opoid tolerant patients she has worked with! The whole body pain subsided, but my back got worse. I had an MRI done, and it revealed spinal stenosis and a number of spinal hemangiomas. I apologize that I cannot tell you more detail, my current PCP has all of my records. But oddly enough, I was never referred to a spinal surgeon.

Fast forward to now. My pain levels have been going through the roof! Until the first of September I had no insurance, so I got my fentanyl via patient assistance, and had to go down to Tramadol because it was the drug created by this company. Now I am insured, and I found via a new MRI (head only) and EEG that I have Temporal Lobe Epilepsy...got the diagnosis this past Monday. I have also managed to find a good Pain Management doctor, who has put me on 7.5/775 Vicoden. It is not working! My pain on good days is around a 5-6, but many times I will rate around a 9. I have to work as a client services representative for a large company, so I drag myself to work each day and try to smile so that the pain does not show in my voice. I wonder if the epilepsy (complex partial seizures) has a bearing on my pain. The pain managment doctor is floored that no one ever suggested me to a spinal doctor...and I am in the middle trying to keep my sanity.

I apologize for my rant, but it feels good to know that there are others out there who understand how pain, unrelenting pain, can degrade the quality of life. I am open to comments, suggestions and critique as well!View Thread

Posted byTwilight0925

3 Replies | Reply | Watch This DiscussionReport This| Share this:New to the forum, but not to pain Hello, and thanks in advance for being here. Severe, chronic pain has a way of making...

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