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sbncmo

Joined: 09/20/2010

My Story:

I am 46 yrs old, married 27 yrs, one son who is 25, a very supportive family. We live in Missouri.

I have Epilepsy, Bipolar II, PTSD, Anxiety disorder, Asthma, Arthritis, Bone Spurs, Degenerative disc, FMS, MPS, CFIDS, Hypoclycemia, Heart murmur, & a few other issues.

I developed epilepsy when I was a yr old - grand mal & absence seizures. The grand mals lasted until I was 6, the absence seizures lasted a little longer. When I was 18, I started having a different type of seizure. I now have 5 types of seizures & am not allowed to drive. One type of seizure has left me wih few memories of the last 28 years. Some meds are used for epilepsy, bipolar & FMS, but I can't tolerate any of them.

In my mid-20's I had a nervous breakdown, was hospitalized & diagnosed with Bipolar II. I have been on every psych med there is, but none helped & some greatly harmed. One caused a weight gain of 65 lbs in 3 weeks. After 5 years I still can't lose it (strange thing - I've never worn a coat since then either. My chemistry was totally changed.) Another med caused tremors. I had to be treated w/Trileptal for 2 yrs before they stopped.

I was also dignosed with PTSD & anxiety disorder from being sexually abused for 7 yrs and sexually assaulted by some fellow school students, a bus driver & an employer. At one point I attempted suicide, climbing up on a bridge to jump off, but something stopped me & I didn't go thru with it. But all of it has left bad scars on me.

As a teenager, I started having pain & my doc thought I might have JRA, but it was dismissed. At 22, I was carrying my son down some concrete steps & my feet slipped out from under me. I saw a chiro immediately. He said I compressed my lower back, did some adjustments & released me. Within a year, I would be walking or swimming & my back & hip would lock up, I couldn't move at all. By my age 26, my pain increased. My doc had just returned from a seminar on FMS & other muscular diseases. He diagnosed me with fibro (confirmed by 3 rheumy's I had to see for SSI). He soon added the diagnoses of MPS & CFS (now known as CFIDS). I am a textbook case of CFIDS - every symptom but 2 or 3. It is what makes it impossible for me to tolerate meds.

He moved & I started seeing my current doc. She sent me to PT. When it didn't help, she ordered an MRI on my hips. I was diagnosed with "sloppy hips", where my hips easily became disjointed. The PT's taught me how to put my hips back in place myself. It helped, but didn't address my back. I insisted on a back x-ray. The ortho told me I had arthritis & bone spurs, but didn't give any treatment. I went back to my doc. She sent me to a pain clinic along with PT again. The pain clinic gave me cortizone shots & I went from there to PT. Everywhere I'd had shots, I had huge knots that the PT's couldn't work with. I started becoming ill from the shots & quit going for them. I later found out they had lidocaine in them, to which I am allergic. The PT still didn't help, so I quit again. Then I tried chiro - moist heat, TENS, muscle stretching. The first 2 months I felt better, then got progressively worse to where I could barely walk out of the office after a treatment, so I quit.

Now, the pain is excruciating - a 9-10 most of the time. I can't take Rx pain meds, OTC don't work. I can't stand in one place for more than a couple minutes. Walking hurts very quickly. Grocery shopping causes so much pain I feel like I will vomit when I'm done. I can't remain standing to fix meals - I start it, sit, check it, sit, finish it. By the time I'm ready for bed, having to sit to brush my teeth, I lay down gasping from the pain.

I insisted again on more tests. Xrays show degenerative disc. Partly inherited, partly from injury, I'm sure. I wonder if there is more, but have to wait to see.

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Severe left rib cage pain

I know this community deals with back pain as I have other discussions here, but I couldn't...

Keep up the fight!

Posted by sbncmo

8 Replies | Reply | Watch This DiscussionReport This| Share this:Severe left rib cage pain I know this community deals with back pain as I have other discussions here, but I couldn't...

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Fed up with back pain & nothing helps

I've posted before & am starting a new post. Here is my history. 25 years ago, I was...

Keep up the fight!

Posted by sbncmo

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!

SheliaView Thread

Keep up the fight!

Posted bysbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps I've posted before & am starting a new post. Here is my history. 25 years ago, I was...

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Reply: Fed up with back pain & nothing helps

Hi Joy, The Truman Lake flood overflow is behind my house. (Sorry, don't want to give...

Keep up the fight!

Posted by sbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps Hi Joy, The Truman Lake flood overflow is behind my house. (Sorry, don't want to give...

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Reply: Fed up with back pain & nothing helps

Thanks Joy, I've had the "10 Things" list for a while. I think it is very good, especially...

Keep up the fight!

Posted by sbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps Thanks Joy, I've had the "10 Things" list for a while. I think it is very good, especially...

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Reply: Fed up with back pain & nothing helps

I feel like I have to vent a little. Is that okay? I called my PCP to refer me to the...

Keep up the fight!

Posted by sbncmo

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.

SheliaView Thread

Keep up the fight!

Posted bysbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps I feel like I have to vent a little. Is that okay? I called my PCP to refer me to the...

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Reply: Fed up with back pain & nothing helps

Hi Joy, I had replied to your post, but for some reason, it didn't post. Anyway, I covered...

Keep up the fight!

Posted by sbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps Hi Joy, I had replied to your post, but for some reason, it didn't post. Anyway, I covered...

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Reply: Fed up with back pain & nothing helps

Hi Dr. Ben-Yishay, I had made a reply to Joy's reply, but for some reason, it didn't post....

Keep up the fight!

Posted by sbncmo

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.

SheliaView Thread

Keep up the fight!

Posted bysbncmo

10 Replies | Reply | Watch This DiscussionReport This| Share this:Fed up with back pain & nothing helps Hi Dr. Ben-Yishay, I had made a reply to Joy's reply, but for some reason, it didn't post....

Reply: Severe left rib cage pain

Hi Joy I absolutely agree with you. They shouldn't be allowed to practice. By law, we...

Keep up the fight!

Posted by sbncmo

8 Replies | Reply | Watch This DiscussionReport This| Share this:Severe left rib cage pain Hi Joy I absolutely agree with you. They shouldn't be allowed to practice. By law, we...

Reply: Severe left rib cage pain

Hi Joy, Some docs shouldn't be allowed to practice. I did a doctor rating search on the ER...

Keep up the fight!

Posted by sbncmo

Hi Joy,

Some docs shouldn't be allowed to practice. I did a doctor rating search on the ER doc I saw Sun morning & found he was rated the worst in every category. I don't know why he is allowed to be practicing.

I hadn't mentioned how angry my husband looked after he talked to the doctor. When he came back in the room, I asked what the doc said & that was when he told me the doc said it was psychosomatic. When I asked what else, he wouldn't tell me. Last night I asked him again what the doc said & he said he didn't want to tell me because it made him mad & it would upset me. I told him from what he just said that I could guess what the doc said - that I was faking the pain & was trying to get some drugs. My husband said I was right. When I asked what else was said, he wouldn't tell me. So something even worse must have been said to make my husband mad, because it takes a LOT to make him angry.

I figure that stupid doc just looked at the treatment given Friday, saw I have bi-polar & decided I was a psychotic junkie. If he had really looked at my records, he would have seen a confirmed diagnosis of pulled muscles, he would have seen that I've been in the ER less than half a dozen times & received medication only once - last Friday, and he would have seen that I am allergic to narcotic/opiod pain drugs.

Anyway, my husband said if either of us have to go to the ER again & see that doc is on call, we will walk out & go to the next closest hospital 30 miles away. The bad thing is, they will not tell you who is on call before you go in because they've had too many patients refuse to come in because a certain doctor is on call. It seems to me that the obvious thing to do is get rid of the bad doctor instead of risking people's lives.

I also learned a little more about the med I was given on Friday. It wasn't a pain med, it was an NSAID & could only be taken for 5 days. So the 2nd doc telling me to stop taking it was no big deal, except it hadn't been 5 days yet.

I understand how you feel about what happened to your mom. We had a similar experience with my husband. He'd had a cold for a couple of weeks & I came home early Friday evening & found him on the bed, unable to talk clearly, numb down his entire right side - TIA (I'd seen several with my gma & knew what it was). I got him to the hospital & the doc said he had bronchitis. When we saw our family doc on Mon, he was really sick, sweating, pale, hard to breathe. The doc said something was seriously wrong & it wasn't bronchitis. She scheduled a CT scan for the next morning because one of the hospital tests came back with a high positive for blood clots. He had the scan done the next morning & we were told our doc would call the next day with the results. We didn't even get 3 miles away & the our doc called us back & put him in the hospital - he had multiple pulmonary embolisms! He died twice during the night & was resucitated, thank God. But he lost 1/3 of his lungs. They died from no oxygen. Our doctor was furious that a blood test proved positive for blood clots & the ER doc ignored it.

Well, I've ranted a bit - sorry. I agree with your suggestion - I'll have my doc call ahead, if it's when she is available. And if we get the same ingoramous, we'll walk out. That's about all we can do.

For now, I'm keeping an ice bag on my pulled muscles, moving it around so it's not in one place too long. Hopefully It will mend soon. It's a very painful thing. One good thing, if you can call it good, is that when the pulled muscles hurt at their worst, it takes my mind off the pain in my back. But the back pain is definitely still there.

Well, talk again soon.

SheliaView Thread

Keep up the fight!

Posted bysbncmo

8 Replies | Reply | Watch This DiscussionReport This| Share this:Severe left rib cage pain Hi Joy, Some docs shouldn't be allowed to practice. I did a doctor rating search on the ER...

Reply: Severe left rib cage pain

Hi Joy, I posted a reply this morning, but for some reason, it didn't post, so here's my...

Keep up the fight!

Posted by sbncmo

Hi Joy,

I posted a reply this morning, but for some reason, it didn't post, so here's my second attempt.

I tried to see my doctor Friday morning, but she is out of the country on a mission tour, so her nurse had me see the nurse practioner. The nurse practioner wouldn't treat me, seeing how bad I was & sent me to the ER. I told the ER doctor that my family doctor had diagnosed me at the start of January with pulled rib muscles & bruises from a really, really bad cold the end of Dec/first of Jan, that she had treated me & that after a week I seemed to be okay, but a week after that, I was in severe pain again, that I can't even get out of bed by myself or out of a chair if I sit all the way back. I was in the ER for 8 hours. The first 4 hours, they were running all their tests, x-rays, lab, etc. The ER doctor was concerned because my oxygen levels kept dropping below 90% & said if we didn't get the muscles to relax, that my lower lung could collapse. So they gave me a morphine shot, hoping to stop the pain which would stop the muscle spasms & checked on me 45 minutes later & it hadn't helped at all, so they gave me another one. Another 45 minutes, no relief. So he gave me a drug cocktail - the strongest narcotic muscle relaxant, a booster to make the relaxant work better, and something to settle my stomach. Well, it relaxed me - too much. I kept starting to sleep & every time I did, my oxygen dropped below 80% because I wasn't breathing, so the nurse made me sit up. After 30 minutes, they released me with a warning not to sleep until the shot wore off. After I got home, I laid back in a recliner & still kept drifting off & I would either cough & wake up or my husband would call to me to wake me up. I finally went to bed at 2 a.m., but the shot hadn't worn off like I thought it had. For the next 2 hours, my husband had to shaking me awake because I stopped breathing. It finally wore off at 4 a.m. Sat morning.

Then around 4 a.m. this morning (Sun), I tried to roll out of bed to take a pain pill & couldn't get up, so my husband helped me up. When I got back & sat on the bed, I was crying from the pain & asked him to take me back to the ER. I told the ER doctor everything I had told them Friday, that I had pulled muscles, that the 1st ER doc was concerned about the lower lung collapsing if we didn't get the muscles to relax. But they ran all the same tests again. Then the stupid ER doc pulled my husband aside & told him they couldn't find anything wrong, so it was all psychosomatic. I was so mad! I had told him that my family doctor had already diagnosed pulled rib muscles & bruises inside my ribs - of course nothing would show up on their tests! And they wouldn't give me any more shots - probably because of what happened Friday.

Anyway, I'm home & I'm trying to keep going on as if nothing was wrong until the pain becames unbearable again, trying to deal with the pain & not baby my left side, using ice/heat & muscle relaxers. Even so, it is difficult to take a deep breathe, but what can I do? And for some reason, this mornings' ER doc told me to stop taking the Rx pain med that Friday's ER doc prescribed. It doesn't make sense to me.

I'm just so irritated with this mornings' ER doc. When you wake up, crying before you wake up, it is not psychosomatic - that pain is real!

Anyway, just wanted to update you.

SheliaView Thread

Keep up the fight!

Posted bysbncmo

8 Replies | Reply | Watch This DiscussionReport This| Share this:Severe left rib cage pain Hi Joy, I posted a reply this morning, but for some reason, it didn't post, so here's my...

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