No faith in doctors -- pain getting worse

Hi, I'm new here and need some encouragement.

I'm 42, female, and self-employed. I finally have health insurance after two years and my family keeps urging me to seek medical help for my chronic pain. But I'm dragging my feet, because I don't want to hear yet again that they can't find the cause of the pain and can't help me. I've been through it all before.

When I was a young teen, I started having hip/buttock/leg pain on the right side when sitting. The longer I sat, the worse the pain got. And when it was aggravated, it tended to take a long time to go away. My parents aggressively sought a diagnosis. I had x rays, CT scans, a bone scan, MRI, thermogram, ECG, blood tests, and physical therapy. All those doctors said they couldn't find the cause, and the last one suggested it might be some undetectable neurological disorder.

So we gave up and I took NSAIDS. I struggled through school and college. By the end of college, I was standing in class. We were not well off, so I worked since I was 15. Sitting jobs were out of the question. I've always worked on my feet.

Over the years I had some car accidents (none my fault), and now have some related muscle pain in my back, a bulging disk at L5S1 (which they assure me is natural degeneration and not serious), and have four screws and a titanium plate between C5/6 from an anterior cervical diskectomy in 2001.

I stopped asking the doctors about the leg pain about ten years ago, when I had another MRI and they assured me that my spine was normal.

One year ago my father passed away from lung cancer. He too had disk problems -- a laminectomy at L5 and Diskectomy at C5/6. He developed spinal stenosis and was in constant pain. He eventually went on disability and spent his days trying to get through the pain with Vicodin and weed. When he developed pneumonia he did not seek treatment. He was suicidal and didn't want to be in pain anymore.

I don't want to be disabled. I don't like taking opiod painkillers. And like my dad, working and being independent is a huge component of self worth.

But things aren't going well. I have chronic pain at rest and my sleep is suffering. I sometimes lie in bed all day Saturday and Sunday so that I can return to work on Monday. The pain in my ankles is the worst, my heels, right hip and knee. Heating pad or a hot bath helps. I take Meloxicam once daily and, especially recently, one Vicodin if I can't sleep. I'm in too much pain to do anything enjoyable on my days off.

My new doctor is a D.O. specializing in functional medicine. I saw him once for routine colon cancer screening. I didn't tell him about the chronic pain.

Part of the problem with seeing doctors is that I take Fluoxetine for major depressive disorder. I have been in remission for two years and doing great. But as you probably know, doctors often dismiss pain if you have mental illness. I also have an autoimmune disease called premature ovarian failure. My ovaries failed suddenly at 38, and I take a synthetic estrogen to help prevent osteoporosis.

I guess my question is, have things changed so much in the past thirty years that it's even worth it for me to pursue a diagnosis? It seems to me they covered everything before, test-wise. I've had a lot of x rays and have a high risk of breast cancer (familial history). I eat right, don't use any drugs including alcohol, exercise and am not overweight. I really, really don't want to get a bunch of radiation, co-pays, and freak out my insurer only to be told yet again, "we don't know what's wrong with you." If that happens again, I'm afraid for my mental health.

Yes, I did research all of my symptoms online and suspect it's possibly Ankylosing Spondylitis or something in that neighborhood. Knowing that for sure isn't going to make my life better.

Anyways, sorry so long. I hope someone takes the time to read it. If not, I got my thoughts out. Maybe I need to accept that disability will be the eventual outcome.

Thanks for listening.

Post Edited (dreamsong_29) : 5/10/2014 7:11:15 AM (GMT-6)

hi.

i'm sorry to hear you are dealing with so much. very frustrating.

i've had chronic back pain for about 16 years (i'm 35). it started following spinal cord surgery, but the neurosurgeon said over and over it wasn't from the surgeries. he then refused to see me. been to lots of doctors, tons of different treatments and meds. no one really seems to know exactly what's going on, they all have their own opinions, but nothing significant shows on MRIs. it seems they all just take a guess with me. a year or two ago, i started w/ a new PM doc. this guy decided injections, and then RFA was the way to go. My pain is not horrible, so between the RFA and Tramadol and just needing help and knowing limitations, i'm ok i guess. to be totally honest, i like the doc, but the clinic and PA, i could do without. But, i only have to see them every few months, so for now, i'll go with it.

I also have severe depression. i've seen some docs who want to blame every single thing on depression. i think w/ some of them i could've walked in there with an arm falling off, and they would've said, "oh, your depression must be worse." with all of my docs now (I have somewhere around 10 specialists for various problems) they occasionally ask how the depression is and about stress, but they do not blame my illnesses or pain on it. i got rid of those docs.

guess i just wanted to say two things: i understand some of what you have been through, and don't give up. i agree that finding a teaching hospital is a good idea. also, if it has been a long time since you had tests done, like MRIs or whatever, it may be worth repeating, as things change a lot over time.

i hope you are able to find some help for your pain and don't give up!

I love that stretch! Had no idea what it was called or that there was such a syndrome. I do need to stretch more. Since I walk 5-8 miles per day, when I rest, everything probably contracts and becomes stiff.

Thank you so much for all of the replies. So it is as I suspected -- doctors are still clueless on many pain syndromes. I do not think my health insurance will cover a pain management clinic or specialist. The drill would probably be the same...a battery of tests that I have to fight for and indifferent doctors treating you like a drug seeker. No thanks.

By the way, when I ruptured the disk in my neck they tried to send me to six weeks of physical therapy before any tests. When I threw a fit and insisted on an MRI, they found the severe spinal impingement and I had surgery ten days later. I would be paralyzed now if not.

Think I will just try to adhere more to the diet/rest/stretching paradigm. And when I can't work anymore, they will have to deal with me.

Thanks.

If it has been 30 years since you have had any tests for your condition it might be worth your time to give it a go again. CT scans and MRI's have gotten a lot better since then, not to mention that maybe your condition might have gotten worse to the point that they can now find something.

What I also like now is that the neurosurgeon will ask for the actual disk themselves to review, and not just read a report,...and when you're in the office, they go over the disk with you right there.

Things were not like this when I had my first MRI decades ago.

They've come a long way, and it's worth the time to check out.





M.

Thank you all very much for the replies. I went to the SAA website mentioned by Ides and it does seem like a likely cause for the pain.

I did not mention (because I didn't want to whine) that I have psoriasis and IBD-C. Both of these and the pain all flare up (literally like a fire in my joints) if I eat food containing gluten. So it all is probably part of some autoimmune disease which I'm working on with nutrition and supplements. Still leaning towards not going back to the primary care doctor for tests.

I do have a couple questions:

1) My PCP has a Naturopath in his office specializing in women's medicine. He urged me to see her about getting on a more natural alternative to the estrogen. Would that type of doctor be helpful for the chronic pain?

2) In my state, medical marijuana is legal and there are many clinics in my area. I was wondering about a more natural substitute for the Vicodin at night. Has anyone tried it for pain flares and did it help?

Thanks for any replies. I'm making some action plans :)

Try it all. The path is long. Lumiere

Have you ever considered sacroiliac joint issues. They cause buttock, hip, leg pain etc. also sitting is very uncomfortable. SI problems often don't show up on MRI scans or X-rays. Usually diagnosed by hands on testing. Maybe another thing for you to consider. This type of pain can often be helped by injections. Seeing a doctor at. A. Pain clinic would be a start, or a spinal surgeon.

Jane

Updating since a flare is keeping me awake. And I do have something to share.

I told my psychiatrist about the chronic pain and he suggested switching from Prozac to Cymbalta. So I started on 20mg (in addition to the Prozac) about three weeks ago.

After about 7 days, I started noticing that my lower back and hip were not hurting as much and wasn't getting the burning ankle pain at night. I went for about 10 days without taking any Vicodin.

That's really remarkable because I worked 80 hours last week and 60 the week before. I should have been in excruciating pain at night.

Now tonight is not so good. I only took a half day off in the past 14 days. So it has caught up with me and made me wonder if it's time to ask the Pdoc to raise the Cymbalta dose. But here's my 'burning' question:

Does anyone worry that pain medication such as Cymbalta might interfere with important symptoms? Because a narcotic or NSAID wears off but those SNRIs are designed differently. What if that bulging disk at L5 begins to impinge my spinal cord, and I don't notice? I could become paralyzed. So maybe a med like Cymbalta is not the way to go if you have degenerating disks?

And yes, I'm still trying to avoid going to my GP.

Have you thought about progressive chiropractor. The have therapies like lasers to treat pain naturally. They can also do extensive tests like docs such as MRIs and such and may have a slightly different interpretation than your GP.

Good luck.

I am going to my new PCP in about an hour to ask if he is willing to help me figure out what is causing all this pain. Even though he is a DO, I expect to be dismissed. But maybe I can get a referral.

Great thread. Dreamsong sounds like a hardworking self-employed gal that deserves her own massage parlor at the end of the day.
I am self-employed in the woodworking field.
I have never read or heard about Cymbalta for nerve pain, and have accepted the mild-opioid way of life. It is actually cheaper, but CVS is warring against it, and the rest will follow suit due to low profits from old meds that actually work just fine.
Likewise, I don't smoke and wouldn't smoke pot even if a doctor recommended it.

Tramadol and Librium are affordable, and since my injuries, I cannot afford insurance anyway, therefore Cymbalta is completely out of the question for me.
I don't buy into the DEA interference with doctor's since state's are legalizing medical marijuana use against federal law,without recourse, (habitual marijuana users even develope bulmous lung disease appr.20 years before cigarette smokers) rather it is corporate profits with big pharma calling the shots for profit margins as the driving force. I hope this country does not go the way of Kansas where pharma' is lobbying for doctor diagnosis-only...then pharmacy prescription determination. That gives Big Pharma corporate control against patient-rights and the Hippocratic oath.
I find it despicable that people have to check to see if their health insurance will pay for a drug that works for them. After paying all that money for insurance, it is none of their business what your doctor has prescribed.
I hope that whatever you find that works for you is also paid for.

Post Edited (JackLegofAllTrades) : 7/28/2014 10:03:31 AM (GMT-6)