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 Post subject: Treating chronic pain
PostPosted: Tue Nov 22, 2011 3:57 pm 
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Love, hugs and good thoughts to everyone here who's dealing with chronic pain - physical or emotional - short or long-term. You are all heroes.

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 Post subject: Treating chronic pain
PostPosted: Thu Dec 01, 2011 5:44 am 
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I've been reading a book about the history of the fight against poliomyelitis in the US, and, of course, much of it talks about FDR and how he led the crusade because of his own personal experience with the disease. I found out something rather interesting, though, while reading some reference material (to help understand more of what the book was saying.) In 2003, researchers did a retrospective analysis of FDR's symptoms determined that it was more likely he actually suffered from Guillain-Barré Syndrome. Given our Fearless Leader's recent experience with the syndrome, I thought some might find it interesting. From (I know, but it's a decent summary of information I've actually read in reliable resources) Wikipedia:

Quote:
The unquestioned diagnosis at the time and thereafter in countless references was paralytic poliomyelitis, which was understandable because polio was epidemic in the adjoining northeastern United States during the late nineteenth and early twentieth centuries, and because one of the foremost polio experts in the world, Dr. Lovett, made the diagnosis based on personal observations of the patient. Also, the disease struck in mid-summer, when poliomyelitis was more common. Furthermore, it has been reported that motor neurons innervating muscles vigorously exercised at the start of polio are those more likely to be paralyzed. Finally, fever usually occurs in polio.

However, Roosevelt's age (39 years) and many features of the illness are more consistent with a diagnosis of Guillain-Barré syndrome (an autoimmune peripheral neuropathy). During the early twentieth century, almost all cases of paralytic polio were in children, and few adults over 30 years contracted the disease, having acquired immunity during childhood. Paralytic polio is rarely symmetric or ascending. The paralysis in polio usually progresses for only three to five days. In paralytic polio, the fever usually precedes the paralysis. Meningismus is common in paralytic polio. The studies suggesting a link between exercise and paralytic polio are subject to recall bias. In contrast, every neurological feature of Roosevelt's illness was consistent with Guillain-Barré syndrome. Fever is found in some cases, and about 15% of severe cases have permanent neurological sequelae.

Roosevelt's principal physicians during his illness, Robert Lovett and George Draper, were experts in polio. It is possible that the diagnosis of Guillain-Barré syndrome was not on their minds, since the disease was not as well known at the time. In 1916, Georges Guillain and Jean Alexandre Barré described the cerebrospinal fluid finding in two soldiers with ascending paralysis, loss of deep tendon reflexes, paraesthesia, and pain on deep palpation of large muscles.

A peer-reviewed study published in 2003, using Bayesian analysis, found that six of eight posterior probabilities favored a diagnosis of Guillain-Barré syndrome over poliomyelitis. For the purposes of the Bayesian analysis in the 2003 study, a best estimate of the annual incidence of Guillain-Barré syndrome was 1.3 per 100,000. For paralytic poliomyelitis in Roosevelt's age group, the best estimate of the annual incidence was 2.3 per 100,000.

Based on the incidence rates for Guillain-Barré syndrome and paralytic polio, and the symptom probabilities for eight key symptoms in Roosevelt's paralytic illness, six of the eight key symptoms favored Guillain-Barré syndrome:

    Ascending paralysis for 10–13 days
    Facial paralysis
    Bladder / bowel dysfunction for 14 days
    Numbness / dysesthesia
    Lack of meningismus
    Descending recovery from paralysis
Two of the eight key symptoms favored polio:

    Fever
    Permanent paralysis
Exact disease incidences and symptom probabilities are not known. When disease incidences were artificially changed in favor of polio to values that were still somewhat realistic, six of eight key symptoms still favored Guillain-Barré syndrome. The only symptom that was somewhat sensitive to changes in symptom probabilities was fever. However, the reasonable change in the symptom probabilities caused the presence of fever to favor Guillain-Barré syndrome. Indeed, two thirds of GBS cases are triggered by an infection. Therefore it is not unresonable to expect that a fever would be present with the onset of GBS. With respect to permanent paralysis, most GBS patients, up to 75%, reach a full recovery. But as many as 15% incur long term disability, such as permanent paralysis. Thus both fever and permanent paralysis do not rule out GBS as FDR's diagnosis. Indeed they are compatible with a disgnosis of GBS. Furthermore, in polio, the virus attacks only motor nerves but sensory nerves are not injured. In contrast, pain and other sensory changes (dysesthesias) are common in GBS, reflecting sensory nerve damage. Given that FDR experienced pain and other sensation issues, such as numbness, those symptoms are not compatible with polio. They do support a diagnosis of GBS.


(I hope the inclusion of 2 extra paragraphs isn't a problem since WIkipedia doesn't claim a copyright...)

Anyway, just thought I'd mention it. And Foggy - given the sound of your recovery, you may just have one up on the Pres! :D

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 4:38 pm 
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I run into this problem every January health plan -- the first few procedures or scrips are tremendously expensive. This year, we're in a new high-deductible plan that combines the pharmacy with other health services. ($2500 family deductible). No problem, I budgeted for that. No matter what the service or drug, $2500 goes away in the first couple of months. Drugs, echo-cardiograph, whatever. We're used to it.

The routine renewal of 2 drugs that normally cost $100-200 is $1500 (combined) for a 90-day supply. The online pharmacy balked at that and called for authorization. I gave that in January. They only applied it to one of the drugs. The other slipped under the cracks. So now I'm out. I can live without it, but it's a critical part of my pain management.

The drug is Cymbalta -- VERY heavily advertised. Very expensive. Very effective. For me, the drug shifts my pain threshold up. Without it, I noticed this morning that shower pressure HURTS. Wearing my heavy coat hurts (thank doG its 50 degrees out). My dry eyes hurt. Crossing my legs hurts. Gravity is not my friend. It also means that sleep is hard.

On the other hand, the new drug they've added to help me sleep is very effective! Took it for the second time last night, and slept 12 hours. Still a bit woozy though.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 4:49 pm 
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Whatever4 wrote:
I run into this problem every January health plan -- the first few procedures or scrips are tremendously expensive. This year, we're in a new high-deductible plan that combines the pharmacy with other health services. ($2500 family deductible). No problem, I budgeted for that. No matter what the service or drug, $2500 goes away in the first couple of months. Drugs, echo-cardiograph, whatever. We're used to it.

The routine renewal of 2 drugs that normally cost $100-200 is $1500 (combined) for a 90-day supply. The online pharmacy balked at that and called for authorization. I gave that in January. They only applied it to one of the drugs. The other slipped under the cracks. So now I'm out. I can live without it, but it's a critical part of my pain management.

The drug is Cymbalta -- VERY heavily advertised. Very expensive. Very effective. For me, the drug shifts my pain threshold up. Without it, I noticed this morning that shower pressure HURTS. Wearing my heavy coat hurts (thank doG its 50 degrees out). My dry eyes hurt. Crossing my legs hurts. Gravity is not my friend. It also means that sleep is hard.

On the other hand, the new drug they've added to help me sleep is very effective! Took it for the second time last night, and slept 12 hours. Still a bit woozy though.


W4 I live with chronic pain too and it seems I never sleep anymore. I don't have a job and don't have insurance. And I've watched my quality of life slowly slip away. Lately, the pain seems to have abated some. I bought a sleep number bed. Although I was skeptical of claims, my doctor said he owned one. So I bought one. What a difference. I can sleep an average of 3 nights /wk now. That's a major improvement for me.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 5:16 pm 
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borealis wrote:
W4 I live with chronic pain too and it seems I never sleep anymore. I don't have a job and don't have insurance. And I've watched my quality of life slowly slip away. Lately, the pain seems to have abated some. I bought a sleep number bed. Although I was skeptical of claims, my doctor said he owned one. So I bought one. What a difference. I can sleep an average of 3 nights /wk now. That's a major improvement for me.


We sprung for the Dr. Breus bed as it solved 2 of my big issues: heat sensitivity and distributed pressure. I tried a Tempur-Pedic but it was too insulating (kept all that excess body heat trapped) and I couldn't move in it. The durned thing was too conturing to roll over. We had tried the Sleep Number a few years ago and for some reason rejected it.

I had to replace the mattress suddenly (when W2 had his heart attack, so he wasn't available for consultation). A friend took me to a Sleepy's and I tried a few mattress sets. As soon as I tried the Dr. Breus, I was sold. On the conventional mattresses I felt every spring and tuft. On the Dr. Breus bed, I immediately felt cool and floaty. I could turn over easily. At that point in my life, I didn't care what it cost -- it was one more decision made and crossed off the list. (Fortunately it worked out.)

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 5:26 pm 
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W4 - sorry you are having such an issue with your meds. I also take Cymbalta, but for the anti-depressant effects. In combination with Welbutrin, it keeps me from driving off overpasses during rush hour.

If I could help, I would.

:hug:

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 5:29 pm 
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Jez wrote:
W4 - sorry you are having such an issue with your meds. I also take Cymbalta, but for the anti-depressant effects. In combination with Welbutrin, it keeps me from driving off overpasses during rush hour.

If I could help, I would.

:hug:

Thanks! :hug: :hug:

I'm actually pretty upbeat about the whole thing, hence the occasional post about dealing with chronic pain. I know there are more people out there than let on.

Our motto: Pain is inevitable. Suffering is not.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 5:36 pm 
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borealis wrote:
...Lately, the pain seems to have abated some. I bought a sleep number bed.

I bought a Sleep Number bed some years ago and still love it. One of the benefits is that I do not toss and turn. That is because of the absence of pressure points. Basically, I wake up in the same position in which I went to sleep, with the same cat in the same position on my shoulder. A CPAP machine had already cut down on tossing and turning, and the air mattress finished the job. That all led to much better sleep.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 5:58 pm 
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Whatever4 wrote:
Jez wrote:
W4 - sorry you are having such an issue with your meds. I also take Cymbalta, but for the anti-depressant effects. In combination with Welbutrin, it keeps me from driving off overpasses during rush hour.

If I could help, I would.

:hug:

Thanks! :hug: :hug:

I'm actually pretty upbeat about the whole thing, hence the occasional post about dealing with chronic pain. I know there are more people out there than let on.

Our motto: Pain is inevitable. Suffering is not.


I for one am glad that you post on the topic of pain. I find it so helpful. :-bd :hug: :-* =D> =D>

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 6:07 pm 
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I am living with chronic pain (rheumatoid arthritis which means I'm a wheelchair user, Crohn's disease, fibromyalgia) and I feel so lucky to have the NHS when I read posts like the ones from W4 and borealis, above. Nobody should have to suffer pain because the drugs are too expensive. Here, all tests, visits, consultations are free at the point of use. Prescriptions cost most people nothing; some people have to pay but it's a flat fee notional amount.

May you all find effective ways to relieve your pain.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 11:30 pm 
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rosy wrote:
I am living with chronic pain (rheumatoid arthritis which means I'm a wheelchair user, Crohn's disease, fibromyalgia) and I feel so lucky to have the NHS when I read posts like the ones from W4 and borealis, above. Nobody should have to suffer pain because the drugs are too expensive. Here, all tests, visits, consultations are free at the point of use. Prescriptions cost most people nothing; some people have to pay but it's a flat fee notional amount.

May you all find effective ways to relieve your pain.


Rosy, I too have Crohns and ra. We are disease twins! :). Except I dont have NHS and one year had close to $30000 in uncovered expenses (remicade mainly).

I have been pretty lucky. I rarely miss work and have managed to stay fairly active - meaning I still hit the malls often. My Drs tell me I am an underreporter of pain and seem to expect me to be in more pain than I am, but I actually think I'm doing kind of ok.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 11:44 pm 
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Maru wrote:
rosy wrote:
I am living with chronic pain (rheumatoid arthritis which means I'm a wheelchair user, Crohn's disease, fibromyalgia) and I feel so lucky to have the NHS when I read posts like the ones from W4 and borealis, above. Nobody should have to suffer pain because the drugs are too expensive. Here, all tests, visits, consultations are free at the point of use. Prescriptions cost most people nothing; some people have to pay but it's a flat fee notional amount.

May you all find effective ways to relieve your pain.


Rosy, I too have Crohns and ra. We are disease twins! :). Except I dont have NHS and one year had close to $30000 in uncovered expenses (remicade mainly).

I have been pretty lucky. I rarely miss work and have managed to stay fairly active - meaning I still hit the malls often. My Drs tell me I am an underreporter of pain and seem to expect me to be in more pain than I am, but I actually think I'm doing kind of ok.


Got the Crohn's and had to retire (social security) as I couldn't work - I worked on computer systems. The medication I take to keep the Crohn's at bay messes me up. I am a system engineer (computer slot system) and no one wants me to work on their computers. One of the meds (prednisone) blew out my sugar processes, so now I have diabetes on top. My treatment is through the VA (doc is double board certified in GI and Internal Med - been through a couple of GI guys losing some of my intestines in the process. The Doc at the VA is really excellent. Got no complaints about VA except the Pugs in Congress are busy taking all the money away from the VA. I guess you can afford 2 wars but can't put up the bucks to fix the broken soldiers.
The kittehs make me feel so much better. Purring helps when things are kinda rough.

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 Post subject: Treating chronic pain
PostPosted: Wed Feb 22, 2012 11:47 pm 
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majorbabs wrote:

I for one am glad that you post on the topic of pain. I find it so helpful. :-bd :hug: :-* =D> =D>


Good to know it helps! Unlike most chronic painees, I'm not depressed (although I have been in the far distant past, so we watch for that). I feel that's why I can be pretty objective about it. I read stuff on the web and it's all complaints by painees** or "snap out of it" by non-painees.


** We made up the term "painee" in my Functional Restoration Program (AKA Pain Class). We decided we weren't sufferers, patients, clients, or any of those single word designations, and we certainly couldn't keep saying "people living with chronic pain" every 5 minutes. Painees is our word. We're in control of our language, if not our pain.

Painiacs was rejected right away as a cross between Panic and Maniac.

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 1:01 pm 
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I experienced one of the odder complications of pain this week. My "good" knee has been buckling more and more every day, producing a fair amount of intense pain followed by increasingly achy pain. Went to the Orthopedic guy, who prescribed physical therapy to see if we can reduce the buckling. My favorite PT did her usual evaluation. One of the tests is to lie on your back on the table, do a leg lift, and the PT tries to push down your leg to gauge leg strength.

My "bad" knee did fine. That's the one due for a knee replacement. The "good" knee, however... nothing. Couldn't do a leg lift at all no matter how much I tried, but it didn't hurt. I was flabbergasted. My glutes on that side didn't work.

In the pain class I took a couple of years ago, we learned about this in an injury. When you pull a muscle, your body prevents you from doing further damage by refusing to work at all. (It shuts the whole thing down. :lol: ) The joint can't bear weight. That's what's happening to me. Within an hour or so of a "buckle", I can't do a leg lift. In the mornings, no problem.

Off to the Ortho folks to get an MRI. Sumpin' ain't right. :roll: Wonder if they do multiple joints at a group rate?

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 1:23 pm 
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Whatever4 wrote:
My "bad" knee did fine. That's the one due for a knee replacement. The "good" knee, however... nothing. Couldn't do a leg lift at all no matter how much I tried, but it didn't hurt. I was flabbergasted. My glutes on that side didn't work.

I never thought of you as being half-assed before, W4. (Sorry...I just couldn't resist.)

Seriously though, what a weird experience. Hope those Ortho folks can pinpoint the problem and make it better. :hug:

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 1:57 pm 
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Piffle wrote:
Hope those Ortho folks can pinpoint the problem and make it better. :hug:

:yeah: from here in Hawaii - I'll bet we can span the globe with FBers feeling the same way! :hug:

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 3:45 pm 
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Whatever4 wrote:
Quote:
My glutes on that side didn't work.



:shock: A hidden danger of going gluten-free? :-*

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 7:07 pm 
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:hug: to all of you who deal with this stuff. I am a wimp compared to most of you who post here, with all you have to deal with, but I do live with OA & chose to sacrifice my pride & walk with a cane years ago to save my still-healthy joints. I was told I needed a hip replacement 7 yrs ago by an orthopedist who was a total asshole. She was ready to put me on her OR schedule in 2 days & I said, whoa, whoa, whoa. I brought up PT "That won't help & you'll be sorry." I told her that, since I was morbidly obese & was also a nurse, I knew that I'd have a high chance of complications, early joint failure, etc, so I wanted to try weight loss first. Her reply? "Oh, you won't be able to lose weight." :shock: :sick: Needless to say, I never saw her again. And F her, because I eventually went to another orthopedist who convinced me to have gastric bypass surgery & then replace my hip. I plan to do the hip next year because of a variety of reasons.

I've lost 120#. It is a miracle. I work with so many Hawaiian, Polynesian, Micronesian patients who, like me, don't have those "small-people-genes" like our Filipino friends, neighbors & colleagues have. I am so glad that they knew me when I was huge & they know me now as a smaller person, because they know I understand what it's like to be born with a huge appetite. Now, I never feel hungry & forget to eat sometimes, am easily satisfied at a meal, take home left-overs that I often throw out. Look up the hormone ghrelin, which I hardly make now because of the surgery. For you folks who are smart about investments, if some pharma company says they are working on a ghrelin-antagonist, buy their stock.

Patients are delighted by my success but most of them are poor & can't do what I did. They ask if I found a miracle drug & can I order it for them. My medical bills last year were 9K but it was worth every penny. I also get really sick sometimes with something called dumping-syndrome, the last time because I drank too much MILK! Go figure. The last episode happened at work & my colleagues were so worried about me. It's a miserable experience that's like a combination of an insulin reaction & chemotherapy, but passes after about 3 hours for me usually.

One of the reasons I did gastric-bypass was something my grandson said. They have annual passes to the dinky little Honolulu zoo & love it. I'd never been with them because I couldn't handle all the walking. "Tutu" is Hawaiian slang for grandma [you'l recall that Obama used Toot for his grandma]. My grandson said to me, "Tutu, please fix your leg so you can come to the zoo with us." From the mouths of babes, etc.

We recently went to Sea Life Park, a tiny little Junior Sea World. I had to walk a bunch of stairs. As I stood at the bottom of one, I recalled that, in the past, I would be hauling 6 twenty pound bags of rice as I did this. No wonder I was in pain.

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 7:22 pm 
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No Pilikia wrote:
:hug:

I've lost 120#. It is a miracle.
Holy Sheetttttt..... That is a big chunk... Congratulations & welcome to the tinier people" crowd !!!!! =D> =D> =D> =D> =D> =D> =D> =D>
Quote:
I would be hauling 6 twenty pound bags of rice as I did this. No wonder I was in pain.


It's a heavy load. My knees, ankles, and hips tell me every day that this is the weight I need to be. 8-) 8-)


VERY KEWL No Pilikia. You're the woman!! :hug: :hug: :hug:

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 Post subject: Treating chronic pain
PostPosted: Tue Jul 02, 2013 7:41 pm 
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Awww, mahalo. Like I said, I think that the miracle drug to prevent weight gain will be something called a ghrelin-antagonist. BACON!!! I really used to love it. Nowadays, I can hardly handle a few sprinkles on a salad. "Ghrelin-antagonist" Remember those words & I hope you'll give me some little credit if that works out.

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Location: Territory of Hawaii, East Kenya
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I'm so glad to have found this topic. In '97 I was dx'd with fibromyalgia in Oz by a doctor declared it was a middle aged American female psychiatric disorder. He was very abusive, actually grabbed my arm and escorted me out of his office while ridiculing me in front of staff and patients in the waiting room. With that on my record, no doctor would talk to me except to say that I needed therapy to address my anger issues with my father. (not kidding) The laboratory doctor who ran the tests told me that I had a serious autoimmune disorder and did his best to find a doctor to help me despite the "expert's" report. Unfortunately, the only help offered was low dose antidepressants, which made me quite hyper, racing mind, and even worse sleep problems. (So Cymbalta is out of the question for me.) Once back in the US, I haven't found things to be much better. I've been fortunate to maintain employment and have insurance, for what it's worth. But it comes at a high cost, and basically I live with chronic pain and a sleep disorder, plus the brain fog. Thank FSM for sticky notes! Since returning to Hawaii, I'm friends with 5 others with the same dx since '99. Three are now on SSDI. One works part time. Only two of us are still able to hold down a professional job, but it's very difficult.

I really hate how chronic pain and lack of sleep have aged me and that I don't have options. And I really hate that there isn't an answer to the cause and there isn't a cure. I welcome all suggestions. I've got to survive 8 more years to reach a decent retirement.

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PostPosted: Mon Jul 22, 2013 6:59 pm 
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Joined: Sun Jun 09, 2013 7:32 pm
Posts: 249
you know,

I love this site more and more every day. I just found this thread and it makes me feel not so alone.

I take CR 12 MG Oxy X2 and Hydrocodone7.5 X 4 daily. I thought I was a horrible person but I feel relieved to see that other people do the same. NOT that I am relieved that others are in pain. I guess I am seeing that I am not alone.


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PostPosted: Wed Jul 24, 2013 6:36 am 
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Location: Territory of Hawaii, East Kenya
Occupation: Sorosbot intern
Well, love the support in general, but I'd loves me some Hawaii support for chronic pain. I just walk my way through each difficult day, hoping my legs don't give out... Gotta a referral - I'd love it!

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 Post subject: Treating chronic pain
PostPosted: Wed Jul 24, 2013 7:21 am 
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Location: FEMA Camp Pi PO Box 3.14159 Okanagan, WA 98840
Occupation: Drone Maintenance @ "Drones RUs" - FAA Licensed and Certified "Drone Service Center©" Call (206) 622-0460 to schedule routine maintenance, warranty, and repairs. Emergencies - If we tell you, we have to bill you.
I have had a "blessing". I have been having severe burning pain over an old break in my arm for years. It finally got too much and saw the doc.
They ended up doing a Ulnar nerve decompression on my elbow/arm. The burning severe pain is now gone. It is now replaced with little pains which I am hoping can be worked out at the gym (doc cleared me).

I am able to cut down on the pain killers. It's infusion day for the Remicade. I get to sit at the hospital for the 3 hours it takes to prep, drip, and go home. I guess it gives me something to do with my every 5th Wednesday.

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 Post subject: Treating chronic pain
PostPosted: Thu Oct 10, 2013 2:15 pm 
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Location: Belize City
Occupation: Visiting doctors.
#%€$&, possible deep vein thrombosis from the arthroscopy. Waiting to see doctor. Plus, I busted my beloved kindle. :(( :(( :((

Not having a stellar day.

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