So sick of it all

This condition has finally broke me down emotionally. I really don't know how much more I can take. First off I called my NL's office 3 days ago for an appointment because I'm running out of pain meds and I need new MRI's. Come to find out my Neurologist is no longer practicing. I never got a letter or call about this. So now I am on a search to find a new one. I have my first appt with my new doc on May 26th. There is no way I'm going to make it till then. I ran out of pills 2 days ago and I was rushed to the hospital yesterday for pain relief. The doc's in the ER gave me 10 percocet to get me through until I get to my neurologist.

On a good day I take about 2 pills a day. There is no way in hell they will last till may 26th. In the hospital they look at me like I am a drug addict. I am a 30yr old woman with chronic daily pain. I go to work everyday in pain because I am a nanny and I can't take pain meds while taking care of children. I must suffer through it for 10 hours a day until I get home. Today I broke down at work while the babies were napping. I had a full on panic attack. It was very scary I've never had one before. I had to call a friend to calm me down. I don't know how much longer I'm going to be able to work. I need to look into getting SSD at 30yrs old.

Some how I will get through this. I have always said " if God brings it to you, he will get you through it". I really needed to get that out it's good to vent sometimes.

Im sorry you are going through all that.I have been right where you are.I have ben blessed with someone to care for me.But My heart gose out to the people who are still being forced to work with this.I feel for you. I hope you get evrything setteld soon.It hard. I'm going to be 48 in uly.It has been a very painful life.I have been ill sence I was 12.Many blessings and may God bless you and show you the way. Take Care

Dont give up... just drink like i do. jk. don't do that. besides... drinking doesn't really help anyways. The pills don't really work, nothing does. Electricity flowing through ones body does not subside to vicodin, percoset, or anything else... at least as far as i've tried. God does bring you only things you can handle... even if it tests every limit you have, but you have the abitlity to be pissed off about it... why isn't anyone pissed off around here? im pissed off too. that was lame of your NS to bale, but i'm here if you wanna swear and be angry. message me anytime. :)

I am so sorry you’re going through all of that:( I’m 32 and I’m really close to filing for Disability too. Was there not another NL in the practice that could take over your case, even temporarily? I had to find a new doctor a couple years ago, because my insurance changed (with very little notice) and that was very stressful. I had to stretch out a limited amount of medication…It was like a sick form of torture. So, I sincerely feel your pain:( I found that a lot of doctors don’t want to accept new patients that are on pain contracts. I eventually found a new doctor, but it’s taken awhile to earn his trust. He knows I’m not a drug seeker, but I’m pretty sure he initially thought I was. While you’re waiting to get in with your new NL, can your primary care doctor prescribe your medication temporarily? My primary is the one that prescribes my medication. It might be worth looking into. I hope you get the care you need and some relief soon!

dear frances

my heart is aching for you /just read your post

i know exactly what you mean about how we are treated at the er/like drug seekers/my lord/10 percocets til you see the doctor in a mths/are they crazy

frogive the lack of punctuation on this reply/seems as though this new keyboard is a bristish one and believe it or not /it is very different from the one i am use to

anyway/ how is your primary doctor/would he/she see you b4 may 26th and help you with the pain management/i would call and see/would not hurt/tell your situation/this so gets me going/you have no idea

here you are in major pain to say the least/working through it all and you get disrespected at the damn er

there is no way that you should have to suffer in so much pain no way/pls call your primary and plead your case/you are in real pain/this is no joke and you are not a druggie by any means

as for ssdi/ my 3 cents is that you should get the ball rolling and apply now/ and once approved///it make take an appeal or even a lawyer to help you/but when i applied i got very depressed after doing the long application/ not one thing was exaggerated/when the app was finally done i broke down in tears/knowing what bad shape i was in at that time made me so down

you can apply online

i had my hubby read me the questions and i told him/he did all the reading and typing

i made sure i let all my doctors know i had applied so they could respond to ssdi as soon as they got something from them

the doctors are usually the hold up/sitting on the paperwork ya know

also/ keep in mind that just because you are on ssdi does not mean you have to be on it forever

hopefully you will feel well again and return to work/so please do not let that get you down or stop you from applying

your health and well being comes 1st

so sorry this is so long

i will end by letting you know that you are cared for/thought of/being prayed for



Hi Frances, I am so sorry to hear what you are going through. I'm in a similar situation right now, and everything seems to be happening so fast. I agree with both Crystal and Lori, could another NL in the same practice or your PCP assist before your May 26th appointment? I actually had almost the exact same situation happen, my NL stopped seeing patients because she was going into research or teaching or something like that. Before a new NL was assigned to me, I needed refills so one of her colleagues approved it without ever seeing me. I can't believe your NL's colleagues WOULDN'T approve a refill, due to withdrawal symptoms? I would press forward and make some phone calls. Don't give up! Best of luck to you, hope to hear some good news from you soon!


I really understand where you are at right now. We all vent at times. Please know we are here for you. I agree with trying your PCP. Mine will cover me if I need medication before it is time to see my Pain Specialist. Dr's don't understand Chiari Pain. It infuriates me when a Chiarian doesn't get proper care. My NL moved to Washington State. I didn't find out prior to him moving. My local NL says he doesn't know how to treat me. I guess that is a good thing. He was honest. I have to wait 4 months to get an appt with a new NL. Please keep in touch with us so we know how you are doing.

I will be praaying for you,

Tracy Z.

Hey guys, let me explain this a bit more. I was frazzled last night when i posted this. My old NL was on sick leave but now I found out he's not coming back at all. The Doctor replacing him doesn't take my insurance. I went to my GP and she recommended me to the neurologist in her office. The earliest appointment he has is May 26th. I asked my GP if she could write me a script for percocet but her office is not allowed to prescribe narcotic's of any kind. She told me to go to the ER if I was in too much pain.

I am so sorry Frances,

So you are either going to have to go back to the ER to get more medication or find another Dr. Have you called the new NL office and explained the situation and ask them to fit you in? It's worth a try. I would call them everyday to see if they had a cancellation. Just an idea....