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chronic pain with no hope

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Old 07-22-2012, 05:19 AM   #31
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Re: chronic pain with no hope

This is going to sound silly but do you have a really good family doctor? If you can find someone who really cares about you and wants to see you to a solution, you won't find yourself feeling AS emotionally invested in each specialist appointment- they will be there for gathering info for you and your family doctor to make a solid diagnosis and treatment plan.
Of course you would have to find someone who has experience with pain management and maybe rheumatology or orthopedics, etc.
I have noticed that with us chronic pain people, we DO get bounced from specialist to specialist and each one becomes our new hope and our next fear all wrapped up in one. A specialist plans on spending a few minutes with you after their resident gets most of the pertinent info...and they are usually evaluating you to see if you are a candidate for a treatment they can offer, whether they know what you have (beyond symptoms) or not. A good family doc is supposed to look at the problem and come up with a combination of specialists, pharmacological solutions, and alternative ideas- all with a good idea of who you are and what you want out of life/what you have been going through.
I went years focusing my hope on specialists: neurologists, rheumatologists(sp?), PMs, PTs, neurosurgeons, orthos, etc...
but all of these people- whilst having good ideas and each offering a varying perspective- were specialists, not individualists. They were not there to solve all of my problems, they were there to see if I were THEIR problem. Podiatrists looked at my ankles, neuros at my spine/nerve/head, orthos at MRIS...but no one besides one out of four of my PTs & one out of 7 GPs looked at ME and saw the whole picture.
It took 7 years and TONS of doctors before I was diagnosed, another 2 before I found an amazing doc who would do anything for me (including give me her cell phone number for when I have severe flares & meet my husband with necessary medication at midnight), and a team of docs to work with her on getting to the bottom of the management of my disease.
I don't think it has to be a GP/family doc- just someone who really gets to know the whole picture and recognizes how it impacts every aspect of your life and health without signing you off as crazy.
Also, on the emotional/stress aspect of things: chronic pain is one of the most stressful things a person can endure because it is exhausting and relentless. It can be debilitating, depressing, even humiliating or completely crippling (as you all know). For THIS reason, I have found that Cognitive Behavioral Therapy/Dialectical Behavior Therapy for pain management has improved my life in major ways. Now, when I am severe pains in the middle of a conversation with someone, I can shut away that part of my body while still acknowledging my physical needs. I can regulate breathing while in pain to help control physical and emotional stress- and I have a professional therapist I can call to help me come up with coping measures for something that is otherwise not treatable. If I am going through serious physical hell, my husband can talk to her about how to deal (himself or how to help me). I'm not "depressed" but I have had to deal with many very depressing losses over the years. I'm not constantly anxious but when I'm in pain all of the time, I sometimes feel like an animal that's being hunted and has been shot once, ya know? For these types of things, it has been helpful to have someone who is a professional even just to concur with me that I'm NOT crazy. This doesn't mean take antidepressants...I know you do not want that...just sharing that CBT/DBT was a really helpful pain management skill set for me. It's the same reason that I sometimes forget my pain for a minute or two when I'm with my horses...we can fill our mind with something else and as long as we know how to not get hurt when we do that, we can have moments where our lives are as pain free as anyone else's...
I am sorry this is so long-winded. My 7 year diagnosis made it so that my disease is irreversible and I know the agony you are going through not knowing exactly what is going on with you and how to take care of it. I really hope that you can find someone else who can help you manage it and who understands the time sensitivity, etc. I know I mentioned this in an earlier post but I have been at two different top research hospitals for the span of several years and while I found interesting and somewhat helpful professionals at one and a diagnosis (after 3 years and 12 docs) at the second, I didn't find personal management and treatment until I found my family doc- a surgeon of 19 years, gyn, PM, writer, all around amazing woman. You deserve someone who cares about what happens in your life (I mean other than all of us, wink). I know the search is a huge hassle but ask friends you trust and ask other docs for referrals and eventually a fit will be found (eh, Cinderella?).
All happy thoughts beaming your way...

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Old 07-22-2012, 08:31 AM   #32
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Re: chronic pain with no hope

Excellent point. My GP took over my pain management after I had a consult with a PM doc, and it has worked out very well. As you said - one doctor and not bouncing around. We've developed a mutual trust, and that goes a long way toward a great communication and not hassles. I've never cared for the assembly-line style of medicine that goes on in big medical centers, and Rochester MN is home to a world-famous clinic. My GP is at a smaller group, and it's far more personal that being just a number. Not all GP/Family doctors are comfortable with managing chronic pain, but mine does a great job. Have a great day everyone.

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Old 09-26-2012, 10:21 PM   #33
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Re: chronic pain with no hope

Well I did see my primary care doctor, which is a family practice doctor and she is the one who referred me to a specialist in the first place. But I am now seeing a Chiropractor and he has diagnosed me with Sciatica. That is treatable! But I knew I had sciatica from the beginning I'm glad to have finally gotten somewhere. It's just going to be awhile before he can help unpinch my nerve! Thank you all for your advice I really appreciate it.

Old 09-26-2012, 11:37 PM   #34
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Re: chronic pain with no hope

Please ask your doctor about RSD/CRPS. Look up the symptoms online and see if they match your symptoms. Many doctors are unfamiliar with diagnosing this disease, and it is important to catch it early.

I know how you feel. Pain is a terrible thing. I hope you find a doctor that can help you.

Old 10-08-2012, 09:13 AM   #35
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Re: chronic pain with no hope

Maybe you have seen too many specialists that dont know you personally. When you were younger what dr (like a family dr or gp) did your parents take you to? Possibly he/she could hear the trouble you are having and order tests or make a new referral. Even your old pediatrician may still see you. I think you can become lost in the sea of specialists that may not have any familiarity with you. Take any reports with you and start over with a dr that will believe how much pain and disability you are having. God bless your endeavors. What do your parents say?

Old 10-08-2012, 10:28 AM   #36
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Re: chronic pain with no hope

hi well I just read all the other posts, hoping I've retained all of what they've said. Some say go to a PM some say don't. I have a great PM doc. You've got sciatica? I don't know which dr. you're seeing for that. My PM treats mine (which is doing great now btw) he did give me an injection for it and I've learned to do some gentle stretches for it every morning. Plus I have Performis Syndrome where the sciatic nerve goes thru the performis muscle, 1 in 4 usually have that.

I was thinking too if you have to have more PT I would suggest water PT, it helped me a lot, I have fibro and back problems. Its a lot easier on ya.

Good luck w/ the sciatica. you can definitely work thru that. Cathy

Old 10-19-2012, 05:41 PM   #37
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Re: chronic pain with no hope

Hi Jackie,

Wow...we could be twins, our stories are so similar. I also have sciatica, but am writing more about the leg/foot thing:

When I was born, that there was a problem with my hips popping out of socket and my pelvis being too narrow, so I was double diapered to make my hips spread as my bones grew. Not really an important fact, but it may have played a part in mechanical issues, later.

As an adult, I had many many many MANY ankle twists and foot sprains, and eventually, my knee started having problems, too. I walked with a limp, which was bad for my goes on from there. Bad ankle leads to bad knee leads to bad hip leads to problem in the sacroiliac joint, leads to bad back.

Anyway, after 4 years, exhaustive tests, wearing casts just to try to heal what wasn't even broken, nothing and I mean nothing worked. Even tried trigger point injections.

Was finally referred to a pain management specialist. I was able to tell them where there was this one specific area of pain (even though it really did hurt everywhere)...but it was super concentrated in this one place. They took me in for an outpatient procedure to try something kind of experimentally. They suspected that my problem was nerve damage, to a nerve that runs from the ankle area up into the leg. From sports, I had been kicked in the ankle/low shin area so many times on the field, they said the nerve felt like overcooked spaghetti when it should be more like a guitar string, it was so damaged from being crushed over and over. They performed a radiofrequency nerve ablation on that nerve, which basically means that they cauterized it and separated its pathway from my central nervous system.

It was my miracle. I walked normally on that foot that very day, and haven't felt it since...five years later.

I hope you can find relief soon. I know all too well the frustration of never getting a diagnosis. You will have your problem addressed in time. Do not lose faith. Continue to be an educated patient, continue to be your own advocate. Hang in there, and let me know how I can be there for you.

Last edited by findingmeg; 10-19-2012 at 05:52 PM. Reason: Grammar & clarifying points

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Old 10-20-2012, 04:43 PM   #38
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Re: chronic pain with no hope

Wow that is very intense! Well I am seeing a chiropractor and he said I have some trauma to my back but not anything significant for surgery to happen and to keep stretching. I am finally feeling better now but I still have pain from working. I'm glad that your feeling better now and congratulations for walking normally again!

Old 11-15-2012, 08:30 AM   #39
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Re: chronic pain with no hope

First post. For me, pain management doctors have been nothing but a scam where they give you lots of injections and thats it. My family doc sent me to pain management. I thought well, your not supposed to get drugs from two doctors when in pain management, so I didn't. Once I had my facet joint injections (with nothing...stone cold clean) I was in a lot of pain. Sweating actually from the injections. When I callled to say hey...I need some help here. Guess what I got? A machine. You can leave a message for a nurse. My nurse never called me back. No matter how often I called they ignored me. They just want to keep the injection cash register machine filling up. Now I have to go back there. They have a counselor who claims she can teach me to deal with pain in other ways so I dont' need narcotics. Lady is getting ONE shot to convince me she is not full of it. And then I am getting off all these stupid *** pain killers. They ruin your life. You want if you feel good or feel bad to be controlled by someobody else? Thats nuts. I'd rather suck on a shotgun. I hate doctors. I'll do whatever I have to now to get rid of them all. I suggest you all give up on this. As far as antidepressants, already been there. All the smiles and hugs are cute and I salute those of you who support people but the truth is this is hopeless. Hopeless and we have numerous elements working against us including in particular the DEA. I have even thought of blowing my head off in my doctors office with a note "DO YOU GET IT NOW????"

First and last post. Good luck.

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