Time to vent......Again

How many of you have heard this question? How are you?? This question is beginning to annoy me. I appreciate the love and concern that it signifies. Yet, I am trying to explain aches, pains, and emotions to people who that have no earthly idea what it's like to have this cluster disorder that is making me a prisoner in my own body. I think the reason that it annoys me is because my answer never changes.

I wake up in the mornings and it takes at least 20 minutes for my vision to get into focus. I am sooooo tired that I usually don't move until two hours later after I have woke up. The first stop is to the bathroom because I will have held it in for so long that if I sneeze, I would turn my bed into a waterbed. I nibble on something just to say I ate something, take my meds andd my vitamins and lay back down.

My brain forgets the state of the body it is attached to. In my head, I am cooking, cleaning the house, and running errands. But then every inch of my body aches in throbbing radiating pain. My fingers and toes have tingling, numbness, and pain. There is so much pressure in my head that I feel like it will explode. I'll make myself do a load of laundry and collapse on the bed as if I just ran a marathon. Everyday, I get throbbing pain in my shoulders that radiate to my arms. I try to massage it and the sheer touch makes me want to cry. I take a prilosec and a BC Headache Powder. It doesn't do anything but I guess it is my way of trying to control the situation. I wish I could get everybody to understand that NOTHING STOPS MY PAIN. So, if I was feeling crappy yesterday in pain, nothing has changed. I have just learned how to put on a magnificent poker face.

I got my referral to the Mayfield Clinic in Cincinnati OH. My surgeron is Dr, Charles Kuntz IV and I am enjoyed over the moon. He has been rated the number one neurosurgeon for the last couple of years. On the downside of that, he is extrememly popular so, my appointment is not until August 28th. Oh well, another crappy summer. My PCP wouldn't give me any meds except Ambien and that doesn't work (go figure). Because I know what meds I want because I know what works for my body, I am automatically labeled as an addict who wants to abuse prescription drugs.

Hydrocodone, Toradol, Tramadol, Tylenol w/codeine, Flexeril, Fioricet do not relieve any pain for me, nor do they make me sleepy. Morphine works as an injection but it burns like heck going through the body. Oxycontin is the only prescription that eliminates my pain and lets me sleep. It's not my fault that I can't find pain relief. It has nothing to do with wanting to get a "buzz" Heck, if I want to get high, I can go to any hood in America, buy some weed and call it a day. Lord knows it is a lot less harmful on my body.

Thanks for putting up with my rant today. You guys...(and gals) rock!!!!!!!!!!!!!!!!!!!!!!!!!

I know how you feel, Nykki. My Neurology PA (yeah, not even a Neurologist... a Neurology Physician Assistant!!) wants me to cut down on my Tramadol intake in order to start me on an antidepressant for pain management, yet she hasn't even thought to give me something else to help with pain, especially at night. The Flexeril I do have only helps so much and doesn't really make me sleepy at all. To top things off, last night was a nightmare! Intermittent pain and numbness in my neck, shoulder and arm, some intermittent numbness in my mouth... UGH!! Got home, took some Tramadol and Flexeril, then passed the **** out (missed the new episode of Orphan Black, but I got to watch it today (thank goodness for DVR)). Sometimes I really hate health care providers.

Hi Nykki! Oh how I feel you… I’m sorry your in so much pain. You know what irritates me the most is when my own family tells be to take some Tylenol or rub some icey hot on the areas that hurt. They just don’t understand the pain. I continuously have to say that doesn’t work if it did I would have done it already. I know oh to well about putting on the poker face. It’s a lot of work but sometimes it just gets us through whatever we’re doing without having to explain how we feel it becomes repetitive. There’s nothing like a good rant especially with people who can relate. Best of wishes at your appt in August take care!

I wish I knew, Nykki. My next app't with my PA isn't until June 12th, but I want to try to get a sooner app't with her to go over my MRI results, and to inform her of my new symptoms I've been having. If they don't do anything, I'm probably going to self-refer to Dr. Oro up in Aurora and see what he says. I've been told that if I can get a referral in to see him, I'd be doing myself a favor.

Right now it just feels like we're watching and waiting.

Hi Nykki.

So sorry you are going through so much pain.If you are like me ,and many others,you have probably become tolerant of many medications,or possibly intolerant to others.I hate having to take slow acting morphine but it is the only thing that will relieve the pain in my legs and feet,but it does not touch the pain throughout the rest of my body.I too get that look of judgement from medical people when they see what I am taking,but without it I would not get any sleep at all.I have no option of surgery ,as my NS say`s it`s not only the Chiari,but EDS and cranial instability as well ,and it could make things worse.My adult son and daughter as well as my 14 year old grand daughter all have to take similar meds .I feel awful that I have passed these genes on to them.I recently had a Pain Management Specialist take me off morphine because he thought that Chiari and Connective Tissue Disorders could not cause that much pain.He gave me a drug called Palexia which turned my life into a living hell because of my reaction to it.I also am not looking for a"buzz"just a reasonable amount of pain relief so that I can have a life of some sort.I am loosing my trust in the medical field to some degree,but I know there are good doctors out there.I just can`t find them here in Australia.I feel as if my family and I are doomed to this medical treadmill and there is no getting off.I hope you have luck with the Mayfield Clinic.I wish we had something like that here in Australia.Rant all you wan`t ,sometimes it`s all we have left.Good luck Nykki and I think the people on this support line can be better than many doctors.

Hi Nykki! Hahaha I like how you worded that the household medical staff brilliant lol! It is so frustrating. I take ambien too I take 12.5 CR. I’m not sure if you’ve tried the CR but it is a slow release that continuously releases it in your body to help you stay asleep. It’s the only thing that works for me I’ve been through tons of different meds and doses and this helps me the most. I still have issues sleeping but they’re better if I can initially fall asleep at a descent time. I’m hoping after surgery next week this nasty insomnia goes away or at least lets up a little. Take care!