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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by CherC68 on January 21, 2004, at 14:38:33
I recently had carpal tunnel surgery on both hands in the summer and now I have Reflex Sympathetic Dystrophy of both hands. previous to surgery I was on meds and posted in the psycho babble section. I was on Effexor and was part of the imfamous Effexor Club (almost all of us quit the Effexor. Now because of pain, I take Neurontin 900 mg a day and 50 mg CR of Paxil and Bextra, but there is so much pain sometimes, and emotional problems dealing with the stress of RSD.
I've been through numerous doctors and know that finding a real RSD Doctor is a lot of work.
I was just wondering if anyone on here has been also diagnosed with the very real painful disorder of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy.
thanks and gentle hugs
Posted by gardenergirl on January 21, 2004, at 20:54:17
In reply to Reflex Sympathetic Dystrophy, posted by CherC68 on January 21, 2004, at 14:38:33
CherC68,
I have not been diagnosed with RSD, but I am so sorry that you have to go through this. In another life/career, I used to occasionally work with people with this dx, and I remember how frustrating and painful it was for them. I also remember how so many people did not seem to understand their pain as it did not fit the "norm". I sincerely hope you are able to find a good doc or rehab program to work with you on this. One who will truly understand and offer positive hope and solutions.Take care and gentle hug,
gg
Posted by CherC68 on January 22, 2004, at 8:20:20
In reply to Re: Reflex Sympathetic Dystrophy, posted by gardenergirl on January 21, 2004, at 20:54:17
Dear GG,
Thank you very much for your reply to my post. Unfortunately, I did not read what "Health" Babble was about until after I posted and realized that of course, this is not the right "spot" for my posting and that "Health" has to do with Health Tips, etc. instead of Health Issues.
I do appreciate your reply though and am seeing several doc's regarding RSD now.
God Bless You,
Cher
Posted by Dr. Bob on January 22, 2004, at 21:28:43
In reply to Re: Reflex Sympathetic Dystrophy » gardenergirl, posted by CherC68 on January 22, 2004, at 8:20:20
> Thank you very much for your reply to my post. Unfortunately, I did not read what "Health" Babble was about until after I posted and realized that of course, this is not the right "spot" for my posting and that "Health" has to do with Health Tips, etc. instead of Health Issues.
This is a new board still in its formative stages, so I think it's fine to post about Health Issues, thanks...
Bob
Posted by CherC68 on January 23, 2004, at 7:57:36
In reply to Re: Health Issues, posted by Dr. Bob on January 22, 2004, at 21:28:43
Thanks Dr. Bob. Who would have thought that after being an "X Effexor Club" Member that was just starting meds and having surgery that I would be on 50 mg Paxil 1200 now of Neurontin 20 mg of Bextra and end up with RSD from Carpal Tunnel Surgery.
I was wondering how many people with emotional/mental/stress and or too much anxiety end with RSD AFTER carpal tunnel surgery. Reflex Sympathetic Dystrophy is such an "unknown" disease that affects millions of men, women and children, yet until I got it, I never heard of it. The pain is horrendous and would love to hear if anyone else has this horrible disease and how many doctors it took to finally say RSD. Most doctors do not know much about it. I had a neurologist that seriously was wrong about it and he had symptoms as being opposite of what they really were. It took me 2 hand therapists, a social worker/therapist, psychologist, psychiatrist, 1 surgeon, 1 internist, 2 neurologists before I found a doctor that was knowledgeable in Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy. Thanks for listening.
I was also wondering how many people with RSD/CRPS end up with extreme memory problems. I put my phone in freezer, stopped at a green light and decided to go through the yellow (people were very mad) and not remembering if I took my pills to who I talked to on the phone.
Gentle Hugs to those with RSD/CRPS and if its okay to talk about RSD here, I would love to talk to others. Thanks again Dr. Bob
Cher
Posted by john constantine on February 17, 2004, at 15:34:57
In reply to Reflex Sympathetic Dystrophy, posted by CherC68 on January 21, 2004, at 14:38:33
I have a quite similar disorder for which I actually have received the diagnosis RSD several times. The qualitative component of my pain is what RSD sufferers describe, only I have it in the face.I have been on all the meds you mentioned plus nearly every other relevant drug in the PDR -- dealt with this crap for 16 years.
Bottom line: The myths about narcotics are NOT true. There is an excellent medication out there for our type of pain. Its a long-acting narcotic called Methadone. Unlike oxycontin or Duragesic patches, etc. Methadone is not a controlled release formulation of a normally fast-acting drug. A single dose of methadone, according to the PDR, has a pain-killing lifetime of I think 6hrs or so. In my experience the benefits last all day and well into the night. The half-life is something like 24-36hrs.
This drug is a godsend for me! I would have blown my head off 9 years ago without it. It seems to target just the right receptors for this kind of pain. I take 2 10mg. pills every morning and the pain is over 80% cut.
Drs. will tell all sorts of lies about narcotics and Methadone. The worst is, "Narcotics don't work for that sort of pain." Not true of Methadone. Not really even true of the other narcs (they just require proper dosing. this means high dosages. most drs. are far too cowardly to provide this therapy.)
The next is the tolerance myth. You'll build tolerance quickly and wel'll have to keep jacking up the dose. After four years on Methadone I am still at the same dose. My experience with other narcotics is that while dosages need adjustment now and then, its nowhere near so drastic.
Then theres the addiction line. Reality is if you take only enough to kill your pain and don't allow yourself to use it for highs, anxiety, or sleep you don't get addicted. You become physically dependent. All this means is that the drug needs to be slowly tapered off when you discontinue. For people like me -- probably you too -- this doesn't matter. I'm on it for the duration. It's just like taking beta blockers for high blood pressure.
I know how painful RSD can be and thats why I'm ranting like this -- I hate to see drs. fob off patients with stuff like neurontin and the antidepressants.
Take your life back -- find the right doc and get some Methadone. Stick with it for at least a few months because if youre a narcotic virgin you may be pretty sedated at first but tolerance builds to the sedative effect and within 6-12 weeks its not all that bad. A good pain doc. will also give you ritalin or dexedrine (provigil is big now but didn't work for me) t o combat this. Nausea was a big problem for me but there are lots of anti-nausea meds out there like Zofran, Reglan, Tigan,compazine, etc (and I heard the best is domperidone -off label -- which has to be ordered from canada).
A good place to inquire as to how you can find the right Dr. is goedhart.com Subscribe to his chronic pain digest -- a wealth of info. Saved my life.
You gotta really advocate for yourself too. Your doctor sure as hell won't! I look at it this way: It is my responsibility to learn everything I can about my disease and its treatment and how the side effects of such treatment are to be countered. Drs. are just annoying know-it-all types I must manipulate successfully in order to receive prescriptions for the treatment of MY choice.
This is frowned on by the high priests. They call it self-medication.
All medication is self-medication. Different docs write different RXs for the same conditions. Sometimes the difference is based on nothing more significant than what pharmaceutical reps work his territory and whos lately been by. We choose our drs. In choosing our docs we choose our meds. And no one can force us to swallow anything.
Chronic pain patients really have very little choice in these days of narcophobia than to take total control of their care.
Posted by CherC68 on February 17, 2004, at 15:52:32
In reply to Re: Reflex Sympathetic Dystrophy, posted by john constantine on February 17, 2004, at 15:34:57
Thank you very much for the information John. You are so very right. I have noticed that if I don't complain loud enough, nobody listens. I have had two cervical blocks and a lumbar block. THey did not work. I had perhaps 1/2 hour relief at one time and then periods of relief lasting minutes a day for the next two weeks. Yesterday I went again for the blocks. I just found out that only so much of the medicine is allowed at a time. They split the meds into 3 dosages 2 in the neck and one in the back. Yesterday they gave me one dosage in my lumbar area and in a few weeks I will get 2 dosages in my neck with the meds split 2 ways.
I have been on Neurontin (only a small dosage)900 mg a day and have already gained about 25 pounds. It isn't working either and I'm nauseous all day long.
I now belong to a RSD Group and I have gotten lots of information from them, but its nice to hear your take on it.
How are you doing now? Where was the RSD? I have it in both hands arms and my right leg and foot. Luckily it doesn't look too bad. Sometimes my foot is ghost white and my hands are pure red but all my fingernails are pure white and underneath the nail is white/grey. Yuck.
Thanks for writing John. I really appreciate the information.
Hugs,
Cher
Posted by john constantine on February 17, 2004, at 17:02:03
In reply to Re: Reflex Sympathetic Dystrophy » john constantine, posted by CherC68 on February 17, 2004, at 15:52:32
Hello,
Wow... I'm really sorry to hear you've had it so rough.
About six months after a bike accident when I was 16, I began developing a sensation on both sides of the face of an intense "liquid" burning. It can get fierce. Its kind of (but not really -- actually its really really tough to describe..) like the flush you get after a high dose of niacin, only more painful. Or, I might liken it to a combination of a blush and the feeling you get when you eat something real tart and tangy, that kind of facial heat, only much more intense and painful.
My first diagnosis was RSD and for about two or three years that stuck. Then lower-half migraine. Then Atypical trigeminal neuralgia. Then atypical facial pain.
The meds for all these conditions are (supposedly) real similar in their effectiveness. Thats why I mentioned Methadone to you -- it sounds to me like your meds aren't working and not only that, they're making you sick. The anticovulsants like neurontin -- my drs. have said they're supposed to be great for burning pain like RSD and atyp. fac. pain, but they did nothing for me. On eight grams of neurontin per day, I experienced a (blessedly) brief psychotic episode. So many drs. will keep people on crap that doesn't work it is amazing. I have had experiences like this, "Tricyclics have never worked for me. I took xyz grams of pamelor for xyt time and nothing." "Well, lets start you off with a low dose of Pamelor and see what happens..." Like talking to the goddamn wall, these guys. If you got a guy like this, fuck em and find another. When I stayed in relationships like that I always got hurt, nearly killed sometimes.
I've had some horrendous times with this condition over the past 16 years. I've found that these Drs. will throw most any poison whatsoever at you so long as its not a narcotic. Before I got on Methadone, this was my cocktail:
Zyprexa (antipsychotic) -- 25mg.
Sinequan (Tricyclic Antidep) -- 50mg.
Inderal (Beta Blocker) -- 120mg.
Prozac -- 80mg
Baclofen -- 80-120mg.
Trileptal -- 900mg.
Trilafon -- 4-10mg. as needed up to 3 days week
Benadryl -- as needed three days per weekEight drugs! My pharmacist had multiple orgasms when she saw me coming! I was like a walking dead man, a real zombie. No personality, no passion, no sex drive, no creativity -- it cost me my academic career teaching philosophy because on this witches brew I truly seemed like a dumbshit.
It wasn't a whole in the wall doc either. The Michigan Head Pain and Neurological Institute in Ann Arbor put me on this trash and they are somewhat prestigious.
These drugs are insidious. The obvious question is why the hell did you take them for so long? Like alcohol or cocaine or heroin, these meds take away ones capacity for insight into the depth of ones situation. When I woke up and demanded a switch to Methadone, the Dr. (little better than a technician) said I was too young. "Do I really want to commit you to 40 or 50 years of taking a daily opioid?.... blah blah blah The first rule of medicine is 'Do no harm'"
What a sick fuck. What about 50 years on your cocktail, Dr.? I doubt I'd have made it more than two or three more on that stuff. All these guys talk about doing no harm, but doctors just seem blind to the immense amount of harm they do each and every time they write an Rx. (I know the drugs are often necessary and the pros might sometimes outweight the cons)
They're so blind because they never really SEE the harm their doing. This guy didn't have to live with me or take my class or do my research under the influence of a cocktail on which I tested a substantial 38 IQ points lower than on a drug free test taken several years prior.
I'm getting my life back together now, although I'll never have the means to get back into my career of choice. Methadone is working for me. Like any of these drugs, it does slow me down somewhat. But -- nowhere nearly as bad as most every other drug used for this condition. Plus, I take dextrostat with a supplement cocktail to compensate for this and it helps alot.
The worst thing for me is that this pain is triggered by certain odors. Citrus, cleaning fluid, ammonia, perfume and cologne. It's truly horrible being a normal heterosexual male, approaching a beautiful woman, and then finding yourself unable to endure more than a few minutes of contact with her (otherwise attractive) perfume scent. I've tried vocks and peppermint oil, etc. but can't figure out a wqay to block my olfactory system.
I feel like the guy in Clockwork Orange. He loved music and they conditioned him to feel pain when he heard it by associating with pain.
Where in the country are you located? If you're midwest I can point out a few places where I've been helped at times.
Posted by CherC68 on February 17, 2004, at 18:15:28
In reply to Re: Reflex Sympathetic Dystrophy » CherC68, posted by john constantine on February 17, 2004, at 17:02:03
Dear John,
I'm in Lansing, Illinois. I just had cp tunnel surgery and am new at RSD. I have not really been put on meds except the 50 mg paxil, 900 mg neurontin and 20 bextra. I am 40 years old and my doctor said i'm too young to start on opioids myself. We are working on the blocks first.
With RSD there is a Treatment Protocol that has to be followed. I try not to blame the doctors because of their lack of giving out narcs that help with chronic pain. The government does breath down the neck of Pain Management Docs for it. They get thrown in jail, etc. Any doc who gives out a narc or Opioid actually leaves a paper trail to be followed by the Government. If that doc gives out too much to too many clients they get whammed then slammed. I'm following a few cases regarding this.
Wow, Trigeminal Neuralgia aka TIC DELA RU (or something like that!) I had Trigemnial Neuralgia when I was only 20 years old. It lasted six months and I contiplated suicide daily. Went to dentist and got a cavity filled on my upper left back side and ended up with Trigeminal Neuralgia on my lower right side of my mouth. I wanted to kill myself daily. I went to the ER once or twice a week, had acupuncture, accupressure, got shots, it was the worst thing in the world. The thing is if someone gets a toothache, everyone feels sorry for them. Many to most of the people in the World have never heard of let alone know what Trigeminal Neuralgia, Reflex Sympathetic Dystrophy or Complex Regional Syndrome is.
When my doc found out I did not have MS he was disappointed! CAn you believe that. MS has meds out there that work and usually ms does not involve the pain that RSD sufferers have. RSD sufferers are 900% more likely to commit suicide than any other disease out there including Aids!
I think it quite weird that you have both too. I wonder if people with emotional stress are more apt to get these neuralgias or if the Neuralgias, RSD, etc. causes the emotional distrubances?
I have always been of average intelligence with a greater strength of mine being common sense and being street savvy, etc. Now, I feel like a complete idiot most of the time. I forget if I have eaten, appointments, did I brush my teeth. I froze my phone recently, once caught myself before I microwaved it. Washed the same load of clothes twice, I stop at green lights until someone honks at me. I forget how to spell words, I forget how to say words or more importantly forget words I use on a daily basis. When asked my name I look at them like they spoke a foreign language. Now that they stopped upping my meds i'm doing better, but the weight gain is hard because my swelling in my hands are horrible.
Thank you very much for taking the time to talk to me. I appreciate hearing your story and don't mind talking to you if you get the time to post on here. I also belong to an MSN Group Aware-RSD which is a group for RSD but you have to sign up for it.
I'm glad you posted on here. I seen the "health" discussion and didn't read much about the it and quickly posted and then realized dang, this is about other types of health issues.
Thanks Again,
Hugs,
Cher
Posted by Dr. Bob on February 18, 2004, at 22:56:29
In reply to Re: Reflex Sympathetic Dystrophy » CherC68, posted by john constantine on February 17, 2004, at 17:02:03
> If you got a guy like this, f[*]ck em and find another.
>
> What a sick f[*]ck.I'm sorry it's been rough for you, and thanks for supporting Cher, and sorry to be such a prude, but please don't use language that could offend others.
If you have any questions about this or comments about posting policies in general, or are interested in alternative ways to express yourself, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
or redirect a follow-up to Psycho-Babble Administration. Thanks,
Bob
Posted by john constantine on February 19, 2004, at 17:29:47
In reply to Re: Reflex Sympathetic Dystrophy » john constantine, posted by CherC68 on February 17, 2004, at 18:15:28
Hello,
I guess I might be "lucky". My trigeminal neuralgia is an atypical case -- I don't get shooting pains. Rather, its a slow and steady burn.
I know exactly what you mean by feeling dumb. It's unfortunate that when we sit in from of an MD, this isn't directly observable.
There are no laws or mandatory guidelines regarding the treatment of RSD -- this protocol you speak of, it's just one of many schools of thought. Although most doctors are nothing but technicians with a cookbook mentality, they do at least possess the flexibility and right to treat patients as they see fit (within reason -- a dr. who hands out dilaudid for a mild case of diarhea crosses the line. But for an extremely painful, life-destroying ailment like RSD or T. Neuralgia, thats a different story.)
You could say the "protocol" is whatever process the Dr. feels comfortable or familiar with. Sounds to me this guy isn't very empathetic. I'd get a Personal copy of my records and split. (always have your own records to give Drs. That way YOU control the information flow. You'd be astounded at the quantity and severity of the errors I've found in records from EVERY dr. I've seen.
If you'd like, I'll e-mail you the names of a few people or places instate that have each helped me for some significant period of time -- until my problem became too complex for them to handle. Just give me your e-mail address at mdholman69@yahoo.com I'd rather send them privately.
I had two stellate-ganglion blocks (injection into neck -- real unpleasant) with no results. The Dr., I think rightly, said since I didn't respond to the first two it would be an unworthy risk to get more. I'd be careful. I had a lumbar (what they call those injections that paralyze lower body for birth?) and my back would still hurt from it every day if I weren'tr already on Methadone.
If I could go back in time and do it all over I'd start with the big guns like Methadone or other narcotics and, slowly over months or years, experiment with various other agents. That way, I wouldn't suffer during the trial and error medication process. These guys think of people as broken down cars. Just garage em till they're fixed. I'd still know if the other stuff worked, since narcotics don't 100% kill all the pain.This too young stuff is bullshit. The way I see it is that I'm too young at 31 to commit suicide or drink myself straight into the void too. Lesser of two evils (if you must call opioids evil): Methadone.
Another interesting point is that its really only opioids, nsaids, and a short short list of other drugs approved by the FDA for pain control. All this crap they shovel into people is off-label, not FDA approved for pain.
I came up with a theory as to the nature and origin of this strange mentality a few years ago after reading Beckers, "Denial of Death." If I can find it, I'll post it up.
Another thing I've heard often is, "It's just not done. No one takes opioids long-term anymore. .....
Stay Noble,
John Constantine
mdholman69@yahoo.comBTW: You should give capsaicin a shot. Buy the maximum strength zostrix I believe the brand is. Don't get generic. Its a cream that can possibly help.
Posted by Dr. Bob on February 21, 2004, at 16:53:26
In reply to Re: Reflex Sympathetic Dystrophy » CherC68, posted by john constantine on February 19, 2004, at 17:29:47
> This too young stuff is bullsh[*]t.
Please don't use language that could offend others. I've already asked you to be civil, so now I'm going to block you from posting for a week.
If you have any questions about this or comments about posting policies in general, or are interested in alternative ways to express yourself, please see the FAQ:
http://www.dr-bob.org/babble/faq.html#civil
or email me, or redirect a follow-up to Psycho-Babble Administration after your block is over. Thanks,
Bob
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