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Old 10-18-2018, 08:19 PM
 
Location: Jacksonville, FL
11,034 posts, read 13,371,681 times
Reputation: 6744

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For five years now, I have been suffering from chronic pain syndrome, which basically means that doctors have no idea what's causing the pain, but the pain is there. It all started off as coccyx pain (sore to the touch). Then over the years, I developed issues with my hips, then chronic lower back pain (muscles and spinal). And even my right ankle and now both ball joints of my big toes are sometimes sore to walk on. I have seen dozens of doctors over the years, spent thousands of dollars and everything. I've seen four chiropractors, four physical therapists, pain managers, osteopaths, orthopedic surgeons, taken anti-depression medications, and all kinds of pain meds. I've been tested repeatedly for any systemic diseases, including Lyme disease, arthritis and everything. The results always show that everything is fine. I can't sit on a couch or car seat like a normal person, because my coccyx will start aching badly as well as my lumbar spine. At work, I have to use a sit/stand desk. In my car, for five years now, I have to use a special cushion with a coccyx cutout. I'm only 34 and this all started when I was 28. It's depressing and has without a doubt, changed my life for the worse. What's even more mind boggling is that I don't recall any specific injury or event that led to these problems. It's a mystery.

I've had numerous MRI's of the lumbar spine, pelvis and x-rays of the spine, pelvis, hips and feet. According to the doctors, they say everything looks great and they wish they had an anatomy and cartilage as good as mine. But then WHAT is the problem???

I have been working with the Mayo Clinic all year long. We've done MRI's, X-rays, PT, etc. and nothing helps. So now they are recommending me their last resort service, which is Pain Rehabilitation. It's a 3-week program, full-time. My job would allow me to use STD and still get paid 100%. The total cost of the program is $35,000, but only $2,000 out of my pocket. But that's still a lot for something so uncertain. I just can't see how a 3-week program will resolve 5 years of pain and suffering. They said it's mostly educational classes to learn how to cope with the pain and how to get back to functioning and living like a normal person. There are also some psychologists, physical therapists and other doctors involved. But for some reason I'm just not sold.

Has anyone done pain rehab with positive results? I really don't want to spend $2,000 out of pocket for something that doesn't seem to truly solve the problem permanently. Is it WORTH IT?? I feel like I lost faith in doctors over the years and now they just want to make more money off of my health. Smh.
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Old 10-18-2018, 08:39 PM
 
18,824 posts, read 6,149,026 times
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OP: Sounds all very unknown and you've done so much as you've posted. I've never done a pain rehab but I know what my body is going thru advancing arthritis and I'm 80 and all the OA started when I was 18 and advanced with years. I live in chronic pain and I won't go into all my body has been thru.

I've posted a lot over the last years about PRP and Stem Cells and that's something you could look into for at least a consultation. I would do that before committing to a pain rehab. You are so young.

There are PRP/Stem Cell providers throughout the U.S. and parts of the world. Find Regenerative Medicine Doctors - GetProlo.com

I take a ton of supplements for joint issues and ibuprofen for pain every 6 hours. I've had some original Prolotherapy work but not recently. It can work for many, no guarantees as the MD on the radio says every week when I listen to him.
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Old 10-19-2018, 08:29 AM
 
Location: Nantahala National Forest, NC
17,420 posts, read 3,547,315 times
Reputation: 22633
Pain rehab programs have been in use for many, many years. Usually they are reserved for those with catastrophic injuries and chronic pain that need all sorts of intensive rehab, including pain management.

You have reached a point where everything else has been offered to you. This is a referral of last resort. Situations such as yours have a psychological component and treatment like this can be beneficial. There are no guarantees.

You must totally commit yourself and work the program with a positive attitude.
This will teach you coping skills for living with a painful situation. That's the goal.

You get out what you put in....if you have a negative attitude don't spend the money. If you can go in with positivity, give it all you have and good luck.
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Old 10-19-2018, 08:44 AM
 
Location: Central IL
13,370 posts, read 7,128,759 times
Reputation: 31084
Mostly "educational classes to learn how to cope with the pain"? For $35,000? If this doesn't involve intensive physical therapy then that sounds like a total ripoff that is not even individualized to YOU. There must be other sources of "education" and why does that take 3 weeks and be semi-residential?

I know it is Mayo's but like you, I would need much more information on the daily format and EXACTLY what services I would be receiving, the level of doctors/assistants working with me and some statistics on how many have "recovered" specific to what conditions they had.
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Old 10-19-2018, 09:31 AM
 
Location: The Driftless Area, WI
1,655 posts, read 630,747 times
Reputation: 3310
Painful coccyx syndrome is a specific diagnosis, usually associated with definite trauma, but your situation qualifies as "fibromyalgia" from the way you've described it. I'm surprised they haven't called it that.


A quick outline of pain physiology: a painful stimulus is applied and a reflex response goes from the receptor to the spinal cord and a message is sent quickly to the muscles to pull away from the source of pain...at the same time, the pain message is also sent up to the brain where it starts things in motion to use your brains to save you from further damage.. but also to start the process of "suffering." ...Meanwhile, another message is sent back down to the original pain receptors to stop sending the message-- "we got the message. No need to worry us with further messages" so to speak.


THAT'S the part of the sequence that's defective in fibromyalgia-- the message isn't turned off. It keeps reverberating like feedback on a PA system.


While we know the basic problem, there's a lot of different chemical messengers involved- serotonin, dopamine, endorphins and probably others, and probably everyone is different. We aren't smart enough to have come up with a definitive medical treatment, so we are forced to mix & match various drugs by trial and error and many times we still aren't successful in coming up with an effective combo.


Anxiety, depression and sleep disorders are all more prevalent in those with fibromyalgia. Is that because those thing are also associated with abnormal serotonin, dopa & endorphin chemistry, or is the never-ending pain just making the patient goofy? .Probably a little of both.


A little psychotherapy is probably good for its value in dealing with the anxiety involved, but isn't that a little bit like seeing a psychiatrist to help deal with having diabetes? It may help you feel a little better about yourself but it won't lower your blood sugar (or correct your serotonin levels.)


BTW- painful coccyx syndrome can usually be treated by surgical removal of the coccyx. Nothing says you can't have painful coccyx syndrome AND fibromyalgia. Maybe surgery would at least help the one thing. Maybe.


Good luck. Hang in there.
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Old 10-19-2018, 11:03 AM
 
2,480 posts, read 1,297,013 times
Reputation: 2815
Have you exhausted all components of therapy yet? Including PT, psychiatry, visualization and anti-inflammatory dieting? I would ask why they think this will work when nothing else has. I would also ask if it could be fibromyalgia or CRPS as it sounds similar to both. If you haven’t tried it yet lyrica is proving to be extremely helpful for me when combined with Celebrex and hydrocodone. In fact I have hardly needed the hydrocodone since upping my lyrica dose. I also have less pain if I’m moderately active.

A spinal cord simulator could be an option too. I would ask about that while you’re at it.
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Old 10-19-2018, 11:17 AM
 
18,824 posts, read 6,149,026 times
Reputation: 12687
Pills are purely banaids. Work to get to the "root" of what is going on. Could even be a dsyfunctional thyroid. Stretching work sounds in order to me.

Last edited by in_newengland; 10-19-2018 at 06:52 PM..
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Old 10-19-2018, 01:03 PM
 
18,824 posts, read 6,149,026 times
Reputation: 12687
And as a poster said above, talking about fibromyalgia and that name has been given to a listing of issues that doctors can't pinpoint, so given that name...a basket of stuff gone haywire and there is a lot of info about the thyroid/fibro connection.
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Old 10-19-2018, 01:09 PM
 
Location: on the wind
4,159 posts, read 1,546,813 times
Reputation: 14781
Quote:
Originally Posted by jaminhealth View Post
Pills are purely banaids. Work to get to the "root" of what is going on. Could even be a dsyfunctional thyroid. Stretching work sounds in order to me.
The OP said nothing about relying on rafts of pills only. With all the testing, imaging, counseling, exams, therapy, etc. sounded exactly like they WERE trying to get to the "root" of the problem instead of masking it. I cannot believe recommendations to try stretching or getting basic bloodwork weren't given early on. These are no-brainers. At this point it sounds as if the OP has been through the wars and deserves a little more commiseration instead of a lecture BTW.

It sounds miserable OP. Hope you find something that helps!

Last edited by in_newengland; 10-19-2018 at 06:53 PM..
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Old 10-19-2018, 02:59 PM
 
Location: Copenhagen, Denmark
9,866 posts, read 8,007,103 times
Reputation: 11220
In my 75 years, I've been very fortunate. Hip and shoulder pain from playing football, ice-hockey and lacrosse (until I was 65) have taken their toll, but I have managed to carry on with only Ibuprofen on my worst days.

My heart really goes out to those of you in chronic, ceaseless pain. You are true heroes.
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