Newbie to the site, but not to pain

Jeanette - posted on 08/10/2009 ( 2 moms have responded )

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Hello all....I thought I would introduce myself and give a little background information.



I'm a 38 year old mom of 3....two teenage girls ages 18 and 16, and a son who is 8 months. I just got remarried last month to a really great guy who not only understands the pain I go through, but does everything he can to help and support me, and even get me through the day if need be. I'm very lucky to have found him because my first husband....let's just say he had a lot of resentment over my illnesses and even accused me of using them to get out of doing things, or even making them seem worse for sympathy.



My first illness/chronic pain condition to develop was Fibromyalgia, back in late 2000. It stemmed from a nightmarish adverse reaction to an antibiotic. I didn't believe an antibiotic could actually trigger Fibro until it was confirmed to me by a professor in Indiana who has studied the effects of these drugs. Scary! Not too long later, I fell on a concrete floor and landed on my shoulder. Because of a multitude of factors, it just got worse and worse. It went from a dx of a sprain to a separated shoulder, to nerve impingement, and when I had surgery, they had to file off part of my shoulder bone, and remove a ligament that had fused to a spur that grew in record time. I now have about 75% use of my shoulder left.



Also, because of the antibiotic, and steroids that I wasn't supposed to have because of it, I ended up with nerve damage, mostly in my lower back. I also had SI joint problems from a car accident, and it just zeroed in on that area. I've had to have RF nerve ablations to "burn out" the nerves from L4-S1 (if not more, can't remember) area of my back, but those only lasted about 6 months and I can't afford more. With my back, as a whole, I have facet joint syndrome, undifferentiated spondylitis, and radiculopathy.



I also have a condition called PLMD, or Periodic Limb Movement Disorder. Mostly it causes random electric impulses in my body, which makes my legs, arms, or other parts of my body jerk at random. It happens mostly at night, but sometimes also happens during the day if I'm tired or very stressed. It's kind of embarrassing if someone I don't know sees it happen!



I tend to not share my conditions with co-workers or casual friends/acquaintances. I had some bad experiences with being vocal about them, so now I'm more cautious. I also don't want to be judged or pitied because of my disabilities, but rather have people focus on my abilities. I'm fortunate that with good medical treatment, I'm able to work, and I have the attitude that I may have these illnesses, but they will NEVER have me!

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Jeanette - posted on 08/12/2009

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Tracy, I forgot to add that I deal with SI joint dysfunction problems stemming from a car accident, and I will tell you that it's a horrible pain, one you're reminded of every time you try to to anything involving your back or legs....including just walking, and nerve pain, that's just the worst! You're right, it's very hard for people to understand "invisible" illness.



I really hope you finally get disability. I heard it's one of the hardest things to fight and win, but please keep persisting, because there will be a lifeline at the end of that rope. The things that helped me most with nerve and SI pain was having the nerves burnt out, and also a newer, non invasive treatment called Ortho-Bionomy. I call it a cross between massage and physical therapy, but with absolutely NO pain. After one session, my SI pain was almost gone, and stayed that way for almost 3 weeks before slowly returning....needless to say, just one treatment won't cut it! You can find out more info and look for someone in your area at www.ortho-bionomy.org. And to be perfectly honest, I don't think I would be able to function without medication, and since I'm not working either, luckily all of them come in generics. If you have good insurance, ask your doc about Lidoderm patches (you'll NEED insurance for them, if not, to fill out a form for need through Endo.....your doc would have that info). They are GREAT with neuropathic pain. They stay on for 12 hours and numb not only the skin, but the nerves right below it.



Please let me know if I can help in any way, even if it's just to lend a listening ear or a shoulder to lean on. After almost 8 years of living with chronic pain, I'm hoping I have some help to offer!!!

Tracy - posted on 08/11/2009

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I AM VERY SORRY FOR EVERYTHING U ARE GOING THROUGH AND I HONESTLY THINK I CAN RELATE TO YOU. 2YRS AGO I GAVE BIRTH TO A VERY LARGE BABY VAGINALLY AND I HAVE BEEN DEALING WITH CHRONIC PAIN SINCE. I WAS RESENTLY TOLD I HAVE NERVE DAMAGE AND SI JOINT DISFUNCTION, IT TOOK THIS LONG TO GET TOLD THAT. I AM UNABLE TO WORK B/C I CANT STAND OR SIT OR ANYTHING FOR LONG B/C OF PAIN, I CANT EVEN TAKE CARE OF MY HOUSE OR KIDS VERY WELL WHICH HAS LED TO SEVERE DEPRESSION. I AM FIGHTING DISABILITY B/C OF MY AGE BUT THE INCOME IS VERY NEEDED B/C WE ARE A FAMILY OF SIX. I HAVE LEARNED THAT PEOPLE DONT UNDERSTAND UNLESS THEY HAVE BEEN THROUGH IT. I AM VERY FRUSTRATED AND AT THE END OF MY ROPE. SORRY TO BE SO DOWN, YOU ARE THE FIRST PERSON I HAVE READ SIMILAR SYMPTOMS. ANY ADVICE OR ANYTHING WOULD BE VERY APPRECIATED. THANKS FOR READING MY BABBLE. HAVE A GREAT DAY AND IT HAS TO GET BETTER RIGHT?

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