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Fed up with back pain & nothing helps
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sbncmo posted:
I've posted before & am starting a new post. Here is my history. 25 years ago, I was carrying my 1 yr old son, going down smooth concrete step, wearing flat sandals & my feet slipped off the steps & I landed on my tailbone. Two days later, a chiro said I'd compressed my lower spine. He did some treatments & after a few weeks, released me. About a year later, I was pushing a grocery cart & my back & hip locked up, very painful & I couldn't move for a couple minutes. This happened a couple of times over the next few years, one time while swimming, so I wouldn't swim in water over my head. Time passed, muscle problems developed, diagnosed with FMS, CFS, CFIDS. The back pain wasn't severe until maybe 12 years ago. I requested x-rays of my spine, the orthopedist said I had arthritis, nothing serious. A few years pass, pain increases, hips locking up & family doc sends me to PT. Initially feel better, but within a month, pain is worse & I had to quit PT. They did show me how to put my hip in place myself, no problem with it since then. A year or so passes, pain becomes unbearable - back to PT along with steroid shots at pain clinic. I had shots first, then PT. When I'd get to PT, I had huge lumps all over my back & PT's couldn't get work them out. I started becoming ill, pain continued to increase, so I had to quit both. Turns out the shots had lidocaine, to which I'm very allergic, thus the large lumps. A couple years ago, went back to doc, a student was with her, he asked if he could feel my back & said something was really wrong with my spine, said to go to chiro. Chiro took 2 x-rays while I was standing, showed them to me next to normal spine. He said the curve in my lower spine was curved in at a 53 degree angle, that normal is 25 degrees. He asked if I'd ever had a back injury & I told him about my fall years ago.He started various treatments & for 6 weeks I felt a little better, but after that I became much worse, barely able to walk out of the exam room. This past year, I was in tears most of the time from pain & asked to be sent to spine specialist. Insurance said I had to have recent x-rays, PT & pain clinic. The x-ray tech had me twisted like a pretzel, very painful. PT decided aquatherapy since previous treatments left me worse. At 1 month eval, I was worse. Then went to pain clinic, doc decided on epidural w/o consulting me. 1st epidural, I had mild seizure immediately after shot (I have epilepsy) & then a severe headache (he said I couldn't have a headache even though the release paper said to report headaches - 3rd item in the list). In the middle of 2nd epidural, had significant seizure, which doc denied & said it was only nerves. After each epidural, pain increased even more, limiting my activities more, more tears from the pain.

Saw family doc this morn. She said no more epidurals, yet nothing more to do. I am allergic to all Rx pain meds, except morphine, but can't get that from pharmacy & to all NSAID's. Well today she told me the x-rays were normal, except some mild DDD some edema on my spine. What's that supposed to mean, other than fluid on my spine? Is it part of what is causing the pain? And what about the chiro's x-rays? Wouldn't standing up for an x-ray be more accurate than laying flat or being twisted around?

I'm in constant severe pain & it appears that nothing can be done. I can't see the spine specialist because they say the spine is normal - they won't even look at earlier x-rays & tests. I wake up in the middle of the night in tears, crying before I even wake up because of the pain. Just what am I to do? I can't live like this! Please help! Give me some suggestions, please!

Shelia
Keep up the fight!
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bj1208 responded:
Hi Shelia -

I remember your post from the past -

What I would suggest is that you call around and find either an Orthopedic Spine Specialist or a Neurologist Spine Specialist and make an appointment - from reading your post it does not show that you've had an MRI/CT Scan done - And if I remember correctly you are on Medicaid - and understand that they will not allow this to be done without the previous tests done - But this is different and you need to have it done -

CALL your case worker - each Medicaid recipient has a case worker and plead your case - they can always make exceptions -

Why can't you get the morphine from the pharmacy??? I get mine from the pharmacy - actually I've gone to 3 different pharmacies looking for the cheapest prices - all you have to do is call around - especially the bigger chains or smaller ones - there shouldn't be a problem getting it -

you can also call around and find a PHYSIATRIST Pain Management clinic - here's the link again describing what they do -

http://www.spineuniverse.com/treatments/what-physiatrist

they really go deeper into pain management and would benefit you greatly - more so than seeing your regular primary care physician -

I know I'm repeating myself from the previous posts but I truly believe this is the route that you need to go -

Dealing with Medicaid can be testy but you have to stand your grounds - and sometimes you have to go outside those boundaries to get things rolling -

Please keep us posted as to what happens - I hope and pray you can get this resolved and get the treatments you need -

take care - ^Joy^
 
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Ari Ben-Yishay, MD responded:
It is unfortunate that you have never seen an Orthopaedic Spinal specialist with fellowship training. My sense is that you have never been given a clear diagnosis. An MRI would be helpful. Your story is all over the place and very hard to conclude anything from it, other than the fact that you have been in pain for a long time. Get an MRI and get a consult with a qualified,reputable spine surgeon for an honest opinion.Good luck.
Dr. Ben-Yishay
 
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sbncmo replied to Ari Ben-Yishay, MD's response:
Hi Dr. Ben-Yishay,

I had made a reply to Joy's reply, but for some reason, it didn't post. I have been in a rather confused state since I had a major seizure Sunday morning & in my original post I put in a confusing statement. I wrote that my PCP told me "the x-rays were normal, except some mild DDD some edema on my spine." This was slightly incorrect & I apologize. It's just the confused state I go thru after a major seizure.

I have had an MRI - my doctor wouldn't allow me to start the epidurals without an MRI & was even upset that they wanted to do the epidural without having looked at an MRI. About 5 months ago the spine specialist I was referred to, ordered the x-rays, then said he would not even see me because I "only had mild DDD." This January, my doctor ordered the MRI. Honestly, I don't even remember if I've had an appointment with her since then. But the radiology department gave me a disk to take to the pain clinic & told me everything was normal. Then the pain clinic doctor said everything was normal. Yet when I talked to my primary doctor today, she told me of the edema. It is my understanding the soft tissue does not show up on x-rays, which means the edema was on the MRI. I feel like I was lied to by the radiology department & the pain clinic doctor.

I want very much to see a spine specialist, but what can I do when they refuse to see me? I did call a spine clinic in another city 2 1/2 hours away & they said they would be glad to see me despite what the other spine doctor said, to just have my doctor send a referral. I just didn't think about it this morning when I saw my doctor. I think my family doctor is just as frustrated as I am & doesn't know what else to do herself. Oh, I hate this confusion - if I'd been clear-headed this morning, I just might have been on the way to getting needed help. I will get the name of the spine clinic & request my doctor to send a referral to them, letting her know that they will see me even though the first specialist refused me.

I apologize for my posts leaving unclear information. Chalk it up to epilepsy, bipolar, meds & any number of things I have & just being plain frustrated over this whole eternal torture. And you are correct, I've never been any clear diagnosis, just treatments that cause more harm than good. Sure, I've been diagnosed with muscular disorders & given a diagnosis that the back pain is from a back injury, but nothing has helped with them.

I'll see if my doctor will refer me to the other pain clinic & I'll let you know what happens.

Thanks, Dr.

Shelia
Keep up the fight!
 
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sbncmo replied to bj1208's response:
Hi Joy,

I had replied to your post, but for some reason, it didn't post. Anyway, I covered most of it in my reply to the Dr.

But I started thinking about another statement I had originally made - that I was allergic to all Rx pain meds except morphine. I'm in one of my brief clear moments for the day, so I'll clear it up. Actually I'm not allergic to all Rx pain meds. I am allergic to several of them, but the others just don't work. Some should not even be given to me. One is the morphine. Morphine is not to be given to anyone with asthma, epilepsy or mental illness, and some other conditions. I have asthma, epilepsy, bipolar, anxiety disorder & PTSD. Last month I was in the hospital with severe pain from pulled muscles & was given 2 shots of morphine. Thankfully there were no negative effects, but it did nothing for the pain either. Upon check-in, I informed the staff 2-3 times that I have epilepsy. That was an awful risk to give me 2 shots of it. So I guess that's another one to add to my list of "do not take".

Anyway, as I wrote the the Dr., I am going to have my family doctor send a referal to the spine clinic that said they would see me even though the other one refused me. Hopefully we will start getting some answers. Sorry to let it all out on all of you. I was just disappointed, confused, angry, & depressed.

I'll be in touch.

Shelia
Keep up the fight!
 
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sbncmo replied to sbncmo's response:
I feel like I have to vent a little. Is that okay?

I called my PCP to refer me to the Nuerological & Spine Institute, the ones that said the would see me after the first spine specialist refused to see me last fall. I'm still waiting to hear if she will refer me. This clinic has neurosurgeons, physiatrists, and interventional neuroradiologists; perform interventional neuroradiology, skull base surgery, and endovascular neurosurgery. They are highly skilled & I feel they could help.

When I told my husband about it, he was a little irritated, saying everything can be done has been done, that I just need to accept things as they are & live with the pain. I don't agree. It isn't that he is unconcerned. He does what he can to make things easier for me around the house. But I find myself turning down all invitations to go do things with family & friends because I'm in too much pain. One of the few times when I do get angry with my husband is when we go grocery shopping - he refuses (most times) to park in the handicap spaces, saying we need to walk for exercise, and he refuses to let me use a wheelchair or scooter, just lean on the shopping cart, even though he knows I will be in tears, gasping for breath within a few minutes of walking in the store.

In any serious health condition, we are told repeatedly to get a second or third or even a fourth opinion. I don't feel that I've had that done. Sure, my doctor has sent me for treatments - but they were the same treatments every time, so that isn't a second opinion. Yes, she contacted a spine specialist, but he refused to see me. Where are my other opinions? I did see the chiro who gave a plausable diagnosis, but his treatment didn't work & NOBODY wants to accept what he said or look at his x-rays. What am I supposed to do? I'm sorry, but I can't just accept things as they are & deal with the pain. And NO specialist will see me without my doctor referring me.

Joy mentioned getting my caseworker to help me, to get around the "requirements", but I'm still waiting for her to call back. It's time for my eligibility review for medicaid & I'm waiting for her to call back about some questions I asked & wanted to talk to her then about getting treatment without my doctor's referral.

It just seems like nothing is being done to help me & I'm very depressed about it. Well, that's the end of my venting. I hope I here something soon.

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
hi Shelia - don't worry about venting - that's what a great support group is about - and i mean it - this is by far the best support group I've found -

So - I had applied for Medicaid -was approved and had a "Spend Down" limit each month - they coincided Medicaid to be effective with my Medicare which meant last June - so you could imagine how much documentation I had to gather to get the information they needed - One problem I have is I live in MO - right on the boarderline - all my physicians are in KS - so.......... you can imagine my horror when I submitted over $2,000 each month of doctor bills, paid and unpaid and pharmacy charges and hoping this would have taken care of my $641 dollar a month "Spend Down" - only to find out that for the first month of June they still wanted me to pay $250 BEFORE Medicaid would kick in - I contacted my case worker and left a message - 2 weeks went by and I did not hear from him (oh case worker changed 3 times) so I drafted a letter explaining my dissatisfaction with them and asked for them to return all documents I had submitted and I had returned the MO Medicaid card to them -

Now I am covered under my hubby's policy as primary (since his birthday is before mine) and Medicare as secondary - these 2 pay very well and I really don't need the Medicaid -

I would say if it's been more than 4-5 days since u called - call again and stress the urgency of this - true care starts with going to the right physicians and it does sound as though you are trying - they just aren't listening -

I understand what you mean by grocery shopping - I too lean over the shopping cart as my back is so bad plus my legs - there are sometimes that I do use the scooter's they have at the stores - especially if I go to Home Depot with hubby - that concrete floor kills me! I make sure if we use my car that hubby parks in handi-cap - and he knows I can't walk that far so he his understanding.

Those that don't have chronic pains do not understand what we go thru - trying to get out of bed each day is a choir in itself let alone trying to walk -

4 years ago I had a primary care physician that was managing my pain meds (hydrocodone) and I would go in every 2 weeks for refills - of course I was still working and being dressed up and make up on he would say to me "You don't look like you're in pain" he had the reports from the pain doc and even the MRI's CT Scans every test I had (MRI written report showed my L5 disc was pressing on the left and right nerve roots) - Needless to say I researched and found a new primary care physician and had him review my records - he sent me in the right path -

Sometimes we have to try and find that needle in the haystack when it comes to physicians -

Keep your chin up - print this out and put on your frig - let all see it;

http://www.howtocopewithpain.org/blog/47/are-you-pain-free-10-things-those-of-us-in-pain-would-like-you-to-know/

this is kinda a Bible to those of us suffering from chronic pains - take care hun - hugs - Joy
 
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sbncmo replied to bj1208's response:
Thanks Joy,

I've had the "10 Things" list for a while. I think it is very good, especially since no matter how bad we feel, we try to put on a happy face for everyone else. Once, a number of years ago, my family had gone camping. I was sick with some sinus thing & in horrible pain to boot. Yet we wanted to do a family picture, so I set the timer & got in the picture & forced a smile. When I saw my neuro/psych, he wanted to see the picture. I showed it to him & he said I didn't look like I felt bad. I asked him "Don't you always smile for a picture no matter how you feel?" He didn't reply.

My family doctor's nurse called me late yesterday. She had called the spine clinic in Springfield. They only accept medicaid for people in their area, so they wouldn't take me. When I told my husband, he said to just forget it, just live with it. I was so mad & I rarely get mad at him. I told him all I'm trying to do is get more opinions. He said I've had more than one opinion. I told him I haven't - the spine specialist in KC refused to see me & my family doctor has sent me for treatments, but treatments are NOT opinions.

Where do I go now? Would a rheumatologist be of help? I believe we have one at our clinic. Let me know what you think.

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
hi Shelia -where do u live at???? I forgot - i'm just south of KC, MO -

I think you may have to really hound your case worker and get something rolling -

is there a chance you can go to another doctor and pay out of pocket for it - get the info you need and give to ur case worker and have it approved? might be option -

let me know - take care - Joy
 
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sbncmo replied to bj1208's response:
Hi Joy,

The Truman Lake flood overflow is behind my house. (Sorry, don't want to give exact location, but you can probably find it on a map.)

I just called my case worker again. I told her This is the third day since I called. Her phone message says she will call within 2 days.

I wish I could go to another doctor & pay out of pocket, but it just isn't possible. I think a rheumy is just what I need. I'm not sure what treatment one would use on me. That's where it gets sticky. Many Rx pain meds I'm allergic to, some I can't take because of the epilepsy - so they are all wiped out. NSAID's interfere with other health issues I'm dealing with & I'm allergic to a number of them too. I can't use a TENS unit or any muscular stimulator because of the epilepsy. PT or muscle stretching ends up making me worse.

Maybe I should just give it up & live with it like my husband says. Maybe there really isn't anything that can be done with the 20 conditions I'm dealing with. I just don't know anymore. All I know is that I'm tired of all of it.

I used to do like you did, Joy, dressing up for my doctor's visits, puting on make-up. But it has been several years now since I did that. People can see me just the way I am. I have a sister selling Mary Kay & a neice selling Avon, both trying to get me to wear make-up again, but I'm not even interested. I tell people, if you see me in make-up, you will know I'm feeling better.

Well, I'm going to go for now. I know this sounds gloomy, but that's how I feel right now - like nothing is ever going to help.

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
hi Shelia - I know exactly where u are - been down in that area numerous times - beautiful country!

I don't give exactly location either -

Just wanted to touch base and see if anything happened since ur last post -

I had a hell of a day - started out last night - could not sleep - had restless leg syndrome so I tried to sleep in spare bedroom so I wouldn't wake hubby - was up til 1am then calmed down enough so I went back to bed - but was wide eyed by then so waited til 3 when coffee went off (yea early riser! LOL) - then had to go to my mom's bank at 6am (inside grocery store -ATM) and get her some money - then had to go back up there at 9am when they opened cause of the daily limit - then drive an hour away to my so called brother's place and take him to some stores and bank (he lost his license and crashed his car last year - didn't know pain pills and alcohol don't mix!!) - so didn't get back til 2:30pm - of course wiped out and in so much pain - was gonna sleep for while then thought not cause won't sleep tonight - ugh hate these kind of nights -

So my question to you would be CAN you call one of these specialist that do that your insurance and set up the appt yourself or do you absolutely have to have the referral?

let me know how u are doing - take care - Joy


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