Room for a multiple issue woman with lots of pain?

[Fluffysmom]

Hi, everyone,

I thought I should introduce myself if I'm going to be looking around and commenting on people's posts.  

I've been through pain specailists, sports and spine medicine doctors, orthopedic surgeons, and am currently on my third neurologist.  I have an appointment next month with a rheumatologist (my second, the first ruled out ankylosing spondylitis and sent me on my way).

At first I was told that I had fibromyalgia, or myofacial pain syndrome, as no one could figure out what was going on.  Through persistance, I discovered that I have an old compression fracture of my 7th thoracic vertebra, as well as disc protrusions and schmorl's nodes throughout my entire spine, basically.  

A wonderful pain specailist that really listened to me discovered that I have SI joint hypermobility, which causes my pelvic girdle to rotate and pull muscles into nasty spasms.  I have a hip labral tear in my right hip, and when I saw a surgeon about getting it repaired, was told that my arthritis was so bad that I needed to wait until I had my hip replaced.  Her X-ray showed that I have some pretty bad arthritis in both SI joints now.  Most recently, I found out through a discograpy with CT with contrast that I have multiple annular tears throughout my lumbar spine.

I've tried trigger point injections, nerve blocks, epidurals, knee injections (yeah, I left my knees out, another story), SI joint and facet joint injections, Prolotherapy, and so on.

Last February I woke up with tremors, dizziness, and fatigue.  A brain MRI showed lesions, which led to the neurologists.  It's confirmed that I have neuropathic pain, as they're convinced that evidence doesn't support the degree of pain that I say I'm experiencing, though no one has an answer as to what's causing it; damage from old injuries, or messed up signals from lesions on my nerves.

I recently added Trigeminal Neuralgia to my list of pain syndromes; I've had issues on and off for years, even had a crown put on by a less than honest dentist.  Lately the pain is so intense that it is hardly bearable, and I made it to my dentist, who said that the pain was not dental in origin.  I increased my Lyrica, which helped calm it down.  I don't chew on the left side much anymore, and have to avoid cold things, like my beloved frozen yogurt; it really irritates that nerve!

I have a Timeline of Symptoms that I put together for my neurologist in my journal, if anyone is interested in learning more about what kind of stuff I've been going through.  I think my profile lists my knee and shoulder surgeries.

I hope I can fit in here, learn from all of you and maybe have some input that might be helpful.  I've learned a lot about listening, offering caring support, helping people research for answers to questions, and just being there when people need to vent from my past year on the Multiple Sclerosis forum (I'm not diagnosed).  Best of all, being there to help people celebrate when something good happens, like finding relief or a good doctor or even getting a new dog or cat.

Nice to meet you all,

Kathy

[Fluffysmom]

Thanks for the official Welcome to the Pain Management Forum!  :o)  

I noticed from your profile that you have severe chronic SI Joint dysfunction, and immediately felt at home.  You would be surprised at how many people don't really know what a SI Joint is!  Or, maybe you wouldn't, since you've probably experienced it first hand.

I feel the same way about the Multiple Sclerosis Community members (a.k.a my forum family), and am sure I'll come to care about the people here just as much; they're in my thoughts when I'm away.  I actually have internet access on my phone, but MedHelp is too complicated to access on my little phone.  I can see if I have messages, though, and if neccessary I can find a library or internet cafe.  OK, I'm not THAT addicted to keeping in touch, but just about.

I travel with my roommate when she goes on business trips, and I'm very glad when she takes her laptop so I can keep in touch when she's in meetings

Some days I don't have the energy to read and post; that's the worst.  I have tried the medication Provigil for my fatigue, but it is very expensive.  I just called the company that makes it to see about their Patient Assistance Program, but since I have insurance, even though it won't pay for it, they won't help me.  Oh well.  

It's over $10 a day; I can cut them in half, but it doesn't work as well.  My other option is to try Ritalin, but I'm afraid that it will raise my heart rate.  A had a cardiac ablation in 2003 to take care of some tachycardia (PSVT), and I don't want it back.  I took a med similar to Ritalin years ago, and it gave me a resting heart rate of 150.

I find that when I have the energy and clarity that Provigil gives me, I'm more able to do physical therapy exercises that will eventually help reduce some of my pain, as well as go shopping for healthy groceries, run other errands, etc.  I have my ice packs ready for when I get home.

I see my physical therapist tomorrow; we've been working on my neck, but will be working on my knee/lower back.  My quads are atrophied after my revision reconstruction on my left ACL in 2006.  I worked really hard before surgery to have great muscles, but the surgeon removed so many loose bodies and trimmed the damaged cartilage that I have advanced chondromalacia, with a large chondral defect, and lots of pain when I try simple strengthening exercises.

I've probably chatted enough for now.  Thanks again for the kind welcome to my new forum!

Kathy

[Tuckamore]

Hi Kathy,

I am glad that you joined us. Welcome to our Pain Management Forum. We all suffer from Chronic Pain (CP). I am sorry to hear about all your painful conditions.

Our members are warm, supportive and informational. We share happy and sad events through this sometimes confusing, often frustrating CP journey. We always welcome one of us.

Like ProdigalGirl we have some members that simply read most of the posts and rarely post or post now and again, they are very much a part of our community. We come from all walks of life but share the same calamity. When I am away from the community for any length of time I worry about our members and miss them all. I hear the same from many others in our community.

I am confident you will be an asset to our Pain Management Forum. Again, Welcome.
Tuck
  

[Fluffysmom]

Thank you for the welcome, for taking the time to post.  I appreciate it.  It's nice to know that you'll be around, even if you don't post.

Wishing you well,

Kathy

[ProdigalGirl]

Hi Kathy,
Sounds like you have been through a lot of trials and tribulations in your life. Thank you for introducing yourself to our forum. You will fit in nicely here as it seems you are a caring and compassionate person. We all need and offer support here and it has helped me through tough times, not posting as much as I read mostly on this forum. Again, welcome to the pain forum and I wish you all the best. I can tell you will be as asset here.


ProdigalGirl