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Ashofoz 11-30-2012 08:44 AM

Hi, i'm another newbie
Hi all,
My name is Ashley and I suffer from CP all over, but mostly thru my back and legs. I had a failed Lumbar Fusion in 2004, and have been struggling to "be tough" ever since. lol
I recently had to come off my pain meds and am Med free for the first time in over 10yrs. And I'm really really struggling with "feeling my pain" naturally for the first time in a VERY long time. Part of the issue is that I no longer have health insurance...which stinks, but my wonderful pain management dr was basically driven out of practice by the insurance companies.
It's just super challenging for me right now. I have 2 young kids, 5 and almost 4, no family within 10 hrs drive of where we live, and very limited income since my husband started a new company. Im lucky he's very understanding, but I feel like lately all I do is complain to him, and if I were him i'd be soooooo sick of it.
I don't know anyone personally who is going through what I am going through. that makes me feel like no one really understands what its like. just getting out of bed is a fight most days! I need to hear that other people know what its like to feel guilty almost every day because I can't get down on the ground and play with my kids. I usually don't want to even move, to be honest. I thought that me coming off my meds would be a good thing, but i'm finding it so so so much harder than I thought. I have ALWAYS tried to "push through" my pain, work hard enough and I can just pretend its not there...and with Pain meds that worked! (most days atleast) But I think in all reality I ended up damaging my spine even more, and now I am paying the price.
Sorry this is so long, I have had this pent up for a to hear from u guys soon. thanks for reading :)

Ilovemycutedog 11-30-2012 10:28 AM

Re: Hi, i'm another newbie
Hi there...Welcome to the boards...

Sorry to hear of your pain issues...

So are you saying your PM is not practicing anymore? Not sure what you mean by the insurance companies driving him away.....I know that my PM has been a huge blessing as he is taking less money for his services by many of his patients but will never leave as it's more important to him that people get care no matter their financial situation...

I haven't had health insurance in almost 6 years after my divorce! So my PM has worked it out where he only needs to see me every 3 months and then I only pay $75 for our appt. We have also worked out all my medication to be generics and whatever is the least expensive. He also does free acupuncture for me anytime I want!

Are there any other PMs in your area? Even if you have to drive to another city like Harrisburg, Reading, or even Philadelphia if needed.

So....if they choose to put you back on any could get a generic muscle relaxer like Flexeril for $8 a month (60 pills) or even something like OxyIR that is around $15-$20....

Believe me...I can empathize with the pain of spine issues...I've had 3 fusion surgeries (two levels) as well as 3 active herniations in the lumbar and upper thoracic region as well as bone spurs, stenosis, Spondy, etc......

My Dr.s and I agree that we will stay away from more surgery unless there is threat of paralyzation...So we manage with some medications but many other modalities like daily exercise, yoga/stretching, physical therapy (I do at home), massage, acupuncture, ice, heat, injections when needed, steroids when needed, biofeedback, eating well and maintaining a healthy weight, etc....

The daily exercise....a 1.4 mile walk each night and daily core stretching has been crucial to keeping my back/neck from getting worse..I feel terrible on any day that it's pouring rain and I can't get out...

So...hopefully you can find a Dr. willing to take less money and work with you on finding a good comprehensive plan that doesn't cost much to help with your pain levels...

Ashofoz 11-30-2012 11:43 AM

Re: Hi, i'm another newbie
thanks ilovemycutedog...I appreciate the advice. There are a few other PMs I could go see, the problem is the out of pocket expense. My hope was that I would be able to handle not being on meds. But the more days that pass, the more that doesn't seem like a possibility... My PM was awesome! He gave me great meds that actually worked! I personally don't understand the whole reasoning for him shutting down, but either way he is only doing non-narc and injection treatments. Which don't work for me unfortunately.
My hubby and I are trying to figure out a way to get me back on some Ins. that will cover my needs, hopefully by the new's just tough. I can usually handle about 3.5 hrs of being on my feet a day before my joints in my legs scream at me.
Also, lately I've been getting stabbing pains on the right side between my shoulder blades...The Dr. said I'd start to degenerate higher up, does that sound like what it is?

Ilovemycutedog 11-30-2012 01:03 PM

Re: Hi, i'm another newbie
Thanks for sharing more....

But the way you write that your PM Dr. is still practicing but he is only doing non narcotics makes it seem like he had an issue with the state or DEA and lost his license to prescribe controlled substances. So that is not a good thing:(

As mentioned....if you can find a Dr. that you only have to go every few months and get on some generic can be manageable money wise...

So are you saying that only narcotics work for your pain and you won't use any muscle relaxers or nerve pain meds in addition to them?

The pain you could be experiencing could be a terrible muscle spasm as I get those a lot....

The thing about spines is that pretty much the majority of the population will have degenerative discs starting in their mid 20's....It's just part of aging and that 85% of the time it can be solved non surgically....

That is why with my present herniations and all the other things wrong with my spine...we are handling things with injections, steroids, medication and then all the things I mentioned from daily exercise to the acupuncture...It takes using every single thing and not just trying it once...No one thing is meant to take away all the pain or even get us to a 5....It's like pieces of a puzzle and the more things you use to help...the easier it is to manage.

So..that is why I was saying that finding a Dr. who wants to treat you as a "whole" and use as many modalities is your best shot....There won't be too many that you find to go in and say that only narcotics work...(I apologize if I misread what you were saying)....

Ashofoz 12-02-2012 08:02 AM

Re: Hi, i'm another newbie
Ur prob right about my PM, unfortunately I moved 5+ years ago and he was HIGHLY recommended by a few different PCP's. In the past I have tried injections (didn't work at all), fibromyalgia meds (helped a bit but made me have major muscle spasms that would cause me to drop things), muscle relaxers helped my tensing up from the pain, but didn't change my constant pain, can't do very much PT because i was born with a deformity in my spine that makes my bones brittle near my surgery site (apparently when I was operated on the ortho found that I had broken bones in my spine atleast twice since childhood that hadn't healed right as well as floating pieces of bones and an abnormal "fusion" between my l5-s1).
So I have tried many different treatments but unfortunately strong narcs were the only thing that truly helped. But ur def right, a new Dr that can try multiple ways to "attack" my pain is def a good idea.
I hope to be able to get in to see another dr in the new year. Until then I just have to hang in there I guess.
I really appreciate having someone to talk to who REALLY KNOWS what it's like, instead of just sympathizing. Thanks a lot, really.

Ashofoz 12-02-2012 08:03 AM

Re: Hi, i'm another newbie
Accidental double post

gmak 12-03-2012 01:35 PM

Re: Hi, i'm another newbie
Dear ashofoz, Welcome to the board. We have very similar stories. I probably could share alot of info re: 30yr history, finding new PM etc. But, the most immediate need that I hear you saying is that you need help with the pain right now. I had to change drs & meanwhile I had no meds. My husb found a TENS buy one get one free online, 2/$49, it saved my life! Others argue their effectiveness but, literally TENS on highest setting 24/7 saved me from #10 pain for 2 weeks 5 days! You will have to buy two rechargeable batteries & reusable electrodes unless you can find a TENS KIT that contains a Tens unit, battery charger, rechargable battery/ies & reusable gel electrodes. This should be availiable for < $80. Or maybe you can buy/rent one from medical supply store. Back braces, the kind that velcroes around low back & abd, with an extra elastic band second layer for extra cinching are really helpful as well. Regardless of how these worked in the past or in PT! please believe it saved me! I hope you can stay opioid free b/c I know that wasnt easy to accomplish. Other members have successfully done this also & you may find their threads/posts by putting in search @ top of every page keywords like stopped all narcotics or holistic medicine or similar phrases as you said in first post. Please ask or post here if you need anything as we are a large group that all have been through lots of CP issues & will be glad to help, listen @ any time. Thank you, gmak

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