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Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 3:24 AM (GMT -6)   
Hi all, 21 years ago I had a double Laminectomy at L5 S1. For many years I was pain free. Not any more. For the past few years the pain has been getting steadily worse and is unrelenting. An MRI was done and I was told I had 'severe degenerative damage at L5 S1 and a ruptured disk at L4'. I have severe pain that radiates down my right buttock, right leg, into my foot. I have lost the feeling on the bottom right side of my right foot, and a couple toes. I haven't been able to work for over 2 years now. I have a hearing scheduled for disability but of course in the meantime I have no health coverage. So I see a pcp at a clinic that has pay by your income. (I had to move to this area once my savings was gone so am stuck with this doctor) My doctor has put me on 5/325 Vicodin 3x a day for pain and THAT IS IT! Needless to say, I am in agony 90% of the time. Without health insurance I cannot go to a pain clinic as they don't take uninsured patients here. My doctor UTTERLY refuses to give me anything more for pain. Not even a muscle relaxer. We did try Lyrica but I simply can't afford it. It didn't seem to do much the week I took it anyway. So I suck it up and deal with the pain as best I can.
Ok, sorry for being a whiner there. I just wanted to lay everything out up front. What I am hoping to get out of this, is to hopefully have people who understand what I'm going through.
Thanks :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 5/24/2012 6:54 AM (GMT -6)   
Hi Kaely and welcome to the chronic pain forum. I can tell from reading your post that the pain is really horrible. I am sorry that you are having to endure so much. But, I can tell you this much about your dr and him not rxing anything to you any stronger than vicodin. You may not be aware of all the mess involved now with drs that script narcotics. With all the hoopla involved on the war on drugs and drug abuse the DEA is now involved and they have set out new rules and guidelines for all drs that rx narcotics. Now most primary care drs will not give pain meds to a patient long term they will send you packing to a PM dr. The primary care drs do not want the DEA breathing down their necks and showing up in their office to do an audit. They are absolutely terrified of the DEA and want no part of them. So, you are really lucky your dr is hanging in there with you and giving you the vicodin. There is no reason though for him not to give you a muscle relaxer though.

From what you have described from your symptoms it sounds very much like you have a pinched nerve and having a bad time with radiculopathy which is the pain in your right buttock going all of the way to your foot. Has the dr mentioned surgery to you?

I do hope that you get your benefits awarded at your hearing. When is your hearing scheduled? I am on SSD due to crohns disease and was awarded benefits within 6 months. I had to wait 18 months for Medicare to kick in. Hopefully since you have had to wait you will not have to wait the 18 months like I did. I know there is a waiting period before Medicare kicks in. Hopefully once you get it, you can get referred out to a good neurosurgeon for a consult to see what really needs to be done to get you better.

Anyway, I wanted to pop on and tell you hello and welcome aboard. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

grandmaroses
Veteran Member


Date Joined Jan 2011
Total Posts : 1355
   Posted 5/24/2012 7:55 AM (GMT -6)   
Hi Kaely, your post sounds familiar, like mine used to. I know you are in pain and you just want it to give you a break. I hate reading how people without insurance are treated pain is there whether you are rich or poor. I hope your disability kicks in soon.
Take care
Rose



Insulin Dependant Diabetic, Fibromyalgia, Gerd, IBS, Sleep Apnea, COPD, Spondylolistesis, Diabetic Neuropathy, Fatty Liver, High Cholesterol

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 5/24/2012 8:24 AM (GMT -6)   
Hi Kaely
Welcome to our cp forum. Glad you found us but sorry you are suffering so much at such a young age. Did you have an injury that caused to have to the surgery to begin with. So sorry about the health insurance. What an awful position to be in. I just don't get that in the states. I am in ontario and it doesn't work like that. I sure hope you get on disability soon. Take care and keep coming back to post and let us know how you are doing.
 
Suzane

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/24/2012 8:30 AM (GMT -6)   
I guess your best bet for now is to wait and see if you can get disability and then
you can be refered out to pain management...Hope you can get this done soon...
So very sorry about the pain levels your having, a few home remedies to try, ginger
can help with pain, tart cherry juice at night as it can make you sleepy and use only a 1/4
cup to start or you'll get diarrehea...a health food store can help, vitamin D can help with pain
along with vitamin B-12...just something to consider , it'll help but not take away all your pain...
melatonin can help with sleep...a moist heating pad can help along with maybe ice packs,
just choose which might help better, some here use ice and other like me prefer heat, whatever
can help...just some things to try, many prayers and well wishes to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 12:19 PM (GMT -6)   
@ Susie Thanks for the welcome :) and thanks for the explanation of why my doc won't help me. At least now I feel less like finding her house and burning it down for torturing me lol.
Yes my nerve is being crushed, believe me I can feel every inch of my sciatic nerve. (I call it my sadistic nerve) I keep hoping it will just die, I'd rather have no feeling than this pain. Perhaps the hope is working as almost half of my foot is numb now and the numbness has begun to crawl up my leg. No insurance means no surgery.
My hearing for disability is scheduled for august 15th. From what I have read, once I get disability (which my lawyer assures me I more than qualify for) it's a two year wait for medicare. So I'm still looking at a very long time before any hope of pain relief. Once I have the medicare I'll be able to go to a neurologist and a pain clinic. (Something to look forward to).
I'm really glad i finally found people who understand, that helps a lot. :)
Chronic pain, Depression, Fibromyalgia.

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 12:29 PM (GMT -6)   
@ Chartreaux How much ginger? I'm on vitamin D as my levels were extremely low. I used to get shots once a month for B-12 because I had a deficiency which led to pernicious anemia. My doctor had told me I was unable to absorb it so I needed the shots for the rest of my life. However when I moved here i mentioned this a few times to my doc here and just got blown off. Ice packs help for sure. I'm even willing to try the cherry juice though i loathe cherries. I'll give about anything a shot at this point. I took melatonin years ago with extremely bad results so I'm going to pass on that.
Thanks so much for the advice and support :)
Chronic pain, Depression, Fibromyalgia.

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 12:31 PM (GMT -6)   
@grandmaroses I'm very sorry you had to go through this too. And you're right, just a day or two off from this pain would be amazing.
Chronic pain, Depression, Fibromyalgia.

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 12:32 PM (GMT -6)   
@ Suzane I think you read this sentence wrong "21 years ago I had a double Laminectomy at L5 S1". I'm 45 now hahaha. You made my day calling me young though, Thank you ^^
Chronic pain, Depression, Fibromyalgia.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 5/24/2012 12:44 PM (GMT -6)   
Kaely not to burst your bubble but if the nerve damage becomes permanent no surgery in the world will take the pain away. I don't know about the nerve dying off either but you just never know. Its a shame how drs are almost as much of a target as we are because of our needs for pain mgt. The DEA has access to every drs office to know who writes narcotics and how much. I do sort of understand why drs are not wanting to get involved, my pain mgt dr gets her regular visits but she is not intimidated by them either where some drs are afraid of losing their license, thats how scared they are. Even pain mgt drs are a little more conservative than they normally were once the DEA got involved.

You might want to do a google search for ginger and chronic pain. I was reading the other day about how ginger is suppose to help with pain but it never said how much to take either. I have also heard of the tart cherry juice but would rather try ginger first and give it a good month to see if it helps.

Keep us posted on how you are doing....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 5/24/2012 1:53 PM (GMT -6)   
I like you have extremely low b-12 and I couldn't tolerate the injections, but I found
a very good B-12 from a health food store and it may also help you, it's worth a chance.
Look for "Wellgenix" Sublingual B-12" comes with 30 fast dissolve tablets, it's in a blue
and white box, I take one of these once a day, and it helps those that can't take the injections
and it's $19.95 USD (United States Dollar) it dissolves under the tongue. Most insurances even medicare
won't pay for the b-12 injections anymore, so try this new sublingual tablet, look for it in
health food stores it can help, I take one a day it's 2000 mcg of b-12, but you don't have to worry if
that is too much as it's not... So look for a health food store near you (not gnc)...they'll be able to help with your ginger questions
and you can also get the ginger ale soda that still has ginger in it at a health food store....as ginger does burn
on the tongue....many well wishes...I use altoid ginger kind in a mint shaped tin, but I break it in half,
ginger is potent....
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 2:48 PM (GMT -6)   
@ Susie well that is not a happy thought at all. I went through this pain 21 years ago before my first surgery. Walked on it for 6 months before surgery but got all the feeling back after surgery. Now it's the same spot again...so very not good but i see no way of getting the surgery I need at this point with no insurance. I have the feeling it may already be too late as the numbness is moving up my leg now. I guess if I'm stuck with it, I'll just have to deal. Good thing I found this forum with people who understand. That's been one of the hardest parts of all this. No one can really understand the pain unless they've felt it.
Chronic pain, Depression, Fibromyalgia.

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/24/2012 2:53 PM (GMT -6)   
@ Chartreux Thanks again for the tips! I'll definitely get the ginger altoids and try that. Ginger ale is yummy but I'm also diabetic so that's a nono. I'll have to look online for the b-12. I live at the end of the earth. No health food stores here.
Chronic pain, Depression, Fibromyalgia.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 5/24/2012 3:19 PM (GMT -6)   
Kaely, many times they can go in and release the pressure off of the nerve in hopes of getting rid of some of the pain. They cannot surgically do anything to the nerve, but with what you have going on depending on you getting Medicare, I would find myself the best neurosurgeon that takes Medicare and be seen in consult for an opinion. Neurosurgeons have more training dealing with the nerves over an orthopedic. The orthopedic is specialized mainly with the bones and such.

I do injections of B12 and it costs me less than $24.00 for 3 months worth, its really cheap. I know you said you use to do the injections before. I have absorption problems as a result of small bowel resection and pills did nothing for me. I tried the ones Chart talked about that you put under your tongue but ended up on injections.

I firmly believe no one understands CP unless they live it too. Some days I don't understand it, so how can I expect someone else to you know, lol. I also think a lot of people are not comfortable around people that have health issues whether its saying or doing hr wrong thing, I just don't know.

I am sure that August cannot get here soon enough for you with the pending hearing. Have you been seen by any of the drs for SSD? The main thing for you is that your dr has sent a copy of all of your records to your atty so they can forward a copy before your hearing. Sometimes we hand delivered current records the morning of the hearing to be given to the judge. Many times we found the drs had not bothered to send in their medical records.

Hang in there things have got to get better......Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/25/2012 2:22 AM (GMT -6)   
@ Susie, yes, I saw the SSD doctor once. He acknowledged that I was in a lot of pain, said I have DDD (but doesn't everyone?) he said that my sciatica was debilitating. Of course this is Maine so I got rejected because they weren't sure I'd be disabled for at least a year?!?! That's when I got a lawyer. Thank goodness they do these cases on commission. My lawyer said I should win when we go for this hearing in August.
Yeah, I've had to get after my pcp's office a few times about sending records. I found that asking them for a copy of my records usually does the trick.
Chronic pain, Depression, Fibromyalgia.

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/25/2012 2:31 AM (GMT -6)   
@ Elise, thank you for the welcome :) You are so lucky you can still work. I was a level 2 Radiography tech (industrial) and I miss it. (especially the pay and benefits!) Now I barely leave the house.
I will talk to my doc about the neurontin, maybe it's more affordable. Lyrica is over 350 dollars a month and there is just no way. Since there is a generic for neurontin maybe it's a lot less. I know nothing about all this so you are all helping me so much with these tips :)
Chronic pain, Depression, Fibromyalgia.

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 5/25/2012 7:16 AM (GMT -6)   
Hi Kaely. Sorry to hear about your situation, as I went through something similiar a few years ago. I was covered under the VA for a bit after returning from a Kosovo deployment (national guard) and the job I had aquired at the time didn't pay enough to get insurance. They gave me Tylenol #3 and Baclofen. It did help a little, but I was getting sub-standard relief. In short, they stopped filling my T3 EVEN though the script lasted longer than the # of days in the fill. They drug tested me and red flagged me for coming up postive for codeine/morphine WHILE being prescribed the medication. I was tested a few days after the # of days the medication was allowed for so to my understanding, I was simply not supposed to continue taking it only 3 or 4 days AFTER the 30 day fill (since they refused to refill my script and then drug tested me). My epidural injection kept getting delayed or changed and it never happened. After I requested to see Pain Management, the VA's pain management chief (Baltimore location) placed into my file that I was a drug addict (I wish I was making this up). I was rejected from even given a first appointment to pain management. They refused to conduct an MRI. I was banned from receiving ANY opioids from any VA facilities, told in a phone call with the VA PM chief that I had serious mental issues, and that I should see a shrink for my addiction problems. She told me my condition was IMAGINARY and that I was a malingering.

Now, the VA has NEVER given me anything stronger than T3, or in a past instance Vicodin 5mgs. Never any schedule IIs. When I explained the T3 wasn't doing the trick THAT is when everything went downhill with the VA. For the next 2 years, I thought my problem was in my head.

It wasn't until I got my current career on track and got excellent health insurance that I got the MRI I needed and was finally able to see a real PM doctor. The MRI showed progressive damage to the L5 disc (ruptured and flattened) and that it was affecting the medial branch nerves. I was given Nucynta and Soma, which worked far better than past medications. I was also given 2 Nuero Freq procedures and epidurals to assist with the pain meds. My pain is still troublesome but much less so than it used to be.....its actually somewhat controllable now.

The reason I wanted to share my story is that you are not alone in receiving inadequate treatment. I too have L5 issues and sometimes it can be EXTREME, especially when it starts affecting the nearby sciatica region and the pain shoots down your legs and into your foot. You are receiving far from adequate treatment, and if there is anyway at all you can get under some type of insurance, it could mean a night and day difference to be able to see a real PM specialist.

In Baltimore, there is The American Pain Foundation. They are a really great resource and perhaps they might be able to offer some kind of assistance. You shouldn't have to live with this level of pain inadequately treated.

There is actually an OTC muscle relaxant that's about 20$ a bottle called "phenibut". Its a prescription in some european countries but its fairly new to the American market and hasn't been made into a prescription drug.....yet. Its worth looking into as it is directly related to Baclofen, the Rx only muscle relxant. I have tried it before and its moderately effective in helping with some of the nuero-muscle pain. It also helps with sleep.
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures helped for months, but pain is up and im having the procedure done again. Currently on 75 mgs of Nucynta (tapentadol - A MOR + NRI) 2 to 3 time per day and Soma 350 as needed.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3695
   Posted 5/25/2012 8:22 AM (GMT -6)   
Kaely hopefully if you get your SDD approved they will back date it, to when you first became disabled. If it is two years or more you will get Medicare right away along with your SSD. I know that is what happened with me, so when I started receiving SSD I also had Medicare part A and B. I am sorry for what you are going through, and I am sorry that we can not to more to help you! But do know we are all here for you to give you our support, and our ears to listen. I wish you well.
 
grainodsalt, what you wrote about the VA is so typical, it is just like the military! When I was stationed in Alaska, an Army Orthopedic surgeon, also told me it was all in my head, and I was malingering, and they sent me to a shrink! I went to their shrink and after lots of testing and interviews, they determined it was not in my head but in my back! After months of excruciating pain, and pounding my fist on the desk of a Neurologist ( who was a Air Force Major) they finally did a myelogram and MRI and found the problem and I had the surgery and got it fixed! I am retired now, I have VA disability but I still avoid using the VA as much as I can because of the experiences I have had with them.
 
White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Kaely
Veteran Member


Date Joined May 2012
Total Posts : 619
   Posted 5/25/2012 10:56 PM (GMT -6)   
@ grainofsalt first I'd like to say thank you for your service. I think the VA is terrible. The people who should get the best of care get the worst, it's awful.
Not sure I'd dare take the phenibut. I have one of those contracts with my doc that I will only take what she says I can. I regret signing it on the really bad days, believe me!

@ White Beard thank you for your service also.
My doctor already knows I need surgery. She's not a neurosurgeon though and obviously has never felt serious chronic pain.
Hearing that I may get my medical coverage when I get my SSD is a huge relief. Hopefully I'll be lucky with that also. I'm really glad to know there are people I can talk to now :)
Chronic pain, Depression, Fibromyalgia.
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